health academix ltd final report to touchstone 20121

Full Report: 12:10:2012

An interview-based study to assess patient experiences and

perceived benefits of the Positive Care Programme (PCP)

An independent report produced for Touchstone by:

Health Academix Ltd: Independent health researchers

Jane Wilkinson: Director

Hina Patel: Associate

Kate Thomas: Affiliate + Hon. Professor of Health Services Research, University of Sheffield

Acknowledgements

We would like to thank all patients whose participation made this study possible, and the staff at Touchstone who facilitated the research process. Thanks also to Dr Tamara Russell (Mindfulness Centre for Excellence and King’s College, London) for her input on the perceived psychotherapeutic benefits reported by participants. Thanks also to Pat Chetwyn, Marjorie Hall and Nicole Smith for their ‘lay’ feedback.

Health Academix Ltd: Final Report on the Positive Care Programme for Touchstone, Leeds: 12:10:2012

Contents

Context........................................................................................................................................2

Executive Summary....................................................................................................................2

1.Introduction...............................................................................................................................2

Background.....................................................................................................................2Study Aims......................................................................................................................2Study methods.................................................................................................................2

2.Profile of participants of the Positive Care Programme...........................................................2

Presenting health conditions...........................................................................................2Participants’ health status and impact on daily lives.......................................................2Reasons for participating in the Programme...................................................................2Carers..............................................................................................................................2Expectations of the Programme......................................................................................2

3.Perceived quality of the process of care as experienced by participants................................2

Accessibility: equity of access.........................................................................................2Personalised care and the exercise of choice.................................................................2Factors enabling choice and personalised care within the Programme..........................2Factors limiting choice.....................................................................................................2Dignity and Respect........................................................................................................2Organisation and infrastructure.......................................................................................2Other factors influencing experience of the Positive Care Programme...........................2

4.Exploring the perceived value and benefits of PCP participation.............................................2

Valuing the opportunity to join the PCP...........................................................................2Perceived impact on physical symptoms........................................................................2Perceived improvements in psychological and emotional functioning............................2Positive and active engagement in life: improvements in social functioning...................2

5.Exploring the mechanisms of effect.........................................................................................2

Entry to the Programme (invitational and exploratory)....................................................2Co-production: personalisation in ‘the here and now’ versus manualisation..................2Building the foundations for improved self-care..............................................................2

6.Sustainability............................................................................................................................2

Pacing activities...............................................................................................................2Health-directed behaviours.............................................................................................2Accepting and adapting lifestyles....................................................................................2Relaxation and stress reduction activity..........................................................................2Creative activities............................................................................................................2Regular exercise..............................................................................................................2Pain reduction exercises and techniques........................................................................2Health service navigation................................................................................................2Challenges to sustained self-management.....................................................................2

7.Postscript reflections................................................................................................................2

Strengths and limitations of the research........................................................................2Research potential...........................................................................................................2Service development potential........................................................................................2Widening access to the PCP...........................................................................................2

8. References..............................................................................................................................2

9. Appendices..............................................................................................................................2

Appendix 1: Data collected and analysed by Touchstone...............................................2Appendix 2: Topic guide for interviews for cohort 2 participants (PCP 3).......................2Appendix 3: Interview questions and prompts.................................................................2Appendix 4: Legacy explored in more detail for cohort 1 (PCP 2 & 3)............................2Appendix 6: Consent form...............................................................................................2Appendix 7: ‘Stages of change’.......................................................................................2

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Context

What is self-management support and why is it important?

‘Around 18 million people in the UK live with a long-term condition such as diabetes, depression, heart disease or arthritis, and this number is expected to double by 2030. Someone with a long-term condition spends on average 3 hours each year in contact with a healthcare professional and 8757 hours looking after themselves. People are already managing their conditions but much more could be done to support those with long-term conditions to do this more effectively.

As well as having a lasting impact on people’s quality of life and wider health outcomes, this support can lead to improved health outcomes and improved levels of patient activation. Patient activation refers to a person’s ability to manage their health and healthcare. As well as exhibiting general health-promoting behaviours, people with higher levels of activation are also more likely to adopt healthy behaviours specific to their particular long-term condition(s). For instance, more-activated people with diabetes are more likely to keep a glucose journal and more-activated people with arthritis are more likely to exercise.

Improved activation is therefore the first, pivotal step on the road to the optimal management of any long-term condition. However, supporting people to manage their healthcare requires changes in the way healthcare is delivered. There needs to be greater emphasis on understanding the motivations and challenges people face in adopting health-promoting behaviours. Health professionals need to recognise and support the autonomy people exercise in managing their own condition and consider how public services can support people to care for themselves effectively on a day-to-day basis.’ 1

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Executive Summary

This summary presents the findings of an independent qualitative study of the Positive Care Programme (PCP), which is a 20-24 week self-management intervention for people with Long Term Conditions. The Programme was developed in 2004 by Dr S Mason, a former nurse and joint Head of the Clinical Trials Unit at the University of Leeds. The PCP is now delivered by Touchstone, a Charitable Trust based in Leeds (Yorkshire, UK). This independent study involved participants who had attended three of five Big Lottery Funded Programmes between 2011/12.

Background and aims of the PCP

The PCP was designed in response to a perceived gap in National Health Service (NHS) provision for people with long-term health conditions. Whilst private fee-paying individuals have access to a wide range of options for preventive healthcare and management of long-term conditions in the complementary healthcare sectorthese services are not accessible to all due to limited capacity to pay and variable NHS provision.2 3 4The PCP aims to provide a holistic package of care within a community-based setting to bridge this gap, providing physical, psychological/emotional and spiritual support and ‘tools’ for improved wellbeing, resilience, and self-management for people living with long-term conditions. i.e. increasing self-efficacy and patient activation and engendering sustainable self-management practice.

What does the Programme involve?

Weekly sessions are divided into three hour-long activities: 1. personal therapeutic interventions (acupuncture, Emotional Freedom Technique, Healing, Indian head massage, massage, reflexology), 2. exercise classes exercise (Alexander Technique, Dru Yoga, meditation, Therapeutic singing and Art) and 3. group workshops (positive thinking, nutrition, mind/spirit/body health). Participants selected different activities over the 20/24 weeks.

Aim and methods of the study

The aim of the study was to gain an understanding of the perceived quality and benefits of the PCP and to examine some of the underlying facilitating factors that increased self-management, as perceived by the participants. Qualitative interviews were undertaken with 23 people who were purposively sampled to reflect the characteristics of the whole cohort of 300+ PCP participants (i.e. gender, age, ethnic background and carers).We interviewed two separate cohorts, those who had recently completed the Programme (recent completers) and those who had completed one year prior to interview (sustainability group). The sample included participants with an attendance record of at least 50% to ensure they had experienced substantial contact with the PCP to enable us to gain a rich understanding of the Programme. The character of our sample means that we cannot comment on the reasons why some people dropped out early in the Programme.

Characteristics of interviewed participants

Section 2 of the full report describes the characteristics of the participants who were interviewed, which included a mixture of people who had physical and mental health conditions and associated symptoms. Stress, anxiety and depression were common to most and for a significant proportion of interviewed participants some form of psychological distress was their primary health concern. For others, stress, anxiety and depression were a result of, and secondary to, the impact of living with long-term physical ill health. Notably, a good proportion of interviewed participants had auto-immune related conditions such as ME and/or Fibromyalgia.

All participants self-referred to the PCP which may be an important facilitator in engaging ‘hard to reach’ and ‘hard to treat’ groups.5 Participants had been recommended to the Programme by vicarious routes

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and mostly word-of-mouth i.e. others who had attended the PCP, Touchstone key-workers, IAPT counsellors1. Reasons for attending included the desire to try out different therapeutic interventions that might alleviate specific symptoms and unmet need via conventional NHS routes.

Those with very little experience or knowledge of the types of interventions that were provided on the PCP came with fewer expectations of the potential benefits. Some participants simply had an undefined sense that the Programme would help them, e.g. comments like “I just thought it would help’. Participants who had prior positive experiences of the types of interventions provided were reassured by the fact that it was delivered by Touchstone, a perceived trusted provider of local quality assured services.

Quality of care

Section 3 of the full report describes issues relating to the quality of care received on the PCP. The experiences of interviewed participants were overwhelmingly positive in terms of the process of care. Participants emphasised the friendly, welcoming atmosphere generated by the PCP team and described their sense of being genuinely respected and accepted as individuals, each coping with their particularhealth-related problems.

That’s it with the Positive Care Programme you’re not judged, everybody’s there for one specific reason and that is to get a better health or a better meaning of health, or to get something out of it that’s going to be different to them. Now to me my biggest problem was that I didn’t want to be judged. I wanted an environment where I wasn’t sitting in a corner. I did the Journey and thought oh God it’s a group … and I thought I’d just sit in a corner and listen but I didn’t, I really got into it.

[Female, 40, depression + anxiety, sleep problems, RTA]

What particularly distinguishes the PCP from most other mainstream programmes is the provision of a range of therapeutic one-to-one sessions and group. Participants appreciated the flexible structure of the Programme, in particular the chance to access and try out the range of therapies, workshops and exercise sessions, before making choices that formulated a care plan to suit their individual needs.Some of the difficulties encountered with full engagement with the Programme related to the limitations created by participants’ conditions. In terms of the structure and content of the Programme, feedback from our interviewees suggests that a shift in emphasis to more experiential sessions initially followed by more sessions of their preferred treatments would be welcomed.

Perceived benefits

Section 4 describes the benefits of the PCP as perceived by interviewees. Participants reported a wide range of perceived direct therapeutic benefits from their participation on the PCP. Many participants came to the Programme suffering from musculoskeletal pain and discomfort commonly associated with long-term stress and anxiety. For most participants, the physical benefits were experienced on the day of treatment and up to one or two days following and there was a sense that long–term cumulative benefits would have been achieved through on-going treatment, beyond the 5/6 week blocks available to them on the Programme.

Another theme was participants’ experiences of feeling ‘calm’ and ‘relaxed’ which was, for most, something not experienced for many years. Most of the longer-term benefits reported related to improvements in psychological, emotional and social functioning. A significant theme was increased levels of confidence and self-esteem and the capacity to engage more fully in life. For some, this had been only ‘small steps’ whilst others reported more substantial progress. Some participants with depression and anxiety had also engaged with psychological services (most commonly via IAPT), and reported that PCP worked well alongside those services.

How The Programme delivers benefits

1 Improving Access to Psychological Therapies (primary care mental health services)

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Section 5 of the report, examines some of the possible mechanisms and factors that participants discussed in terms of achieving the reported benefits. Many participants reported feeling ‘stuck’ and socially isolated as a result of their condition and held little prospect of any positive change to their health or life situation prior to the PCP. What the Programme offered some participants, at the very least, was an opportunity to experience things differently and open up the possibility that some change was possible, which in turn gave them increased optimism for the future

It helped me because … it prompted me again about what kind of life … what kind of lifestyle I want for myself. Being able to stand up and be counted. It doesn’t matter what kind of problems you’ve had, have some more confidence about who you are and what you’re about. I think that’s mostly what the Programme showed me that it takes all sorts to make up this world. I think that’s one thing that it kind of set me on that journey if you know what I mean. That journey of self-discovery, things that would work for me.

[Female, 46, carer, LBP, ruptured disc, sciatica]

From the point of entry into the Programme participants were encouraged to reflect on their own motivations and experiences and take charge of their health behaviours. What and who they engaged with also provided a different sort of experience, one grounded in choice, experimentation and exploration and self-reflection. This broke down into a number of aspects of the patient journey: from entry point to engagement to the intervention itself and future actions (i.e. sustained self-care and management). The ‘invitational and exploratory’ nature of how participants enter the Programme, provided opportunities to engage ‘hard to treat’ and ‘hard to reach’ groups, for example, BME groups and carers. The self-referral process means that participant’s sense of responsibility for their own health and wellbeing was engaged at the outset. Self-referral also enabled participants to engage at very different points in relation to a ‘stages of change model’, because there is no requirement for them to be in a state of ‘readiness to change’.6

The weekly ‘blocks’ of treatments, workshops and exercise activities continuously re-engage participants in exploring a range of options without any pre-set agenda to ‘move patients on’. Intrinsic to the therapies, workshops and exercise programmes was the fact that participants were consistently reminded to focus on the ‘here and now’ and had opportunities to reflect on and address their immediate needs at each weekly session. This cyclical process of re-engagement separates out the PCP from other interventions such as CBT, which does require a certain ‘readiness to change’ for participants to be able to benefit or other, more manualised, SMPs which use ‘stepping up’ approaches to skill acquisition. Meeting people ‘at the point they are at’ when they join the Programme was very important to those participants who had been socially isolated and lacking in self-worth. Participants could tailor their experiences on the Programme with the on-going support and help of those people delivering the Programme, providing a model of co-production with highly personalised care and support.

The infrastructure of the PCP and the flexibility of staff accommodated participants in ways that would be difficult, if not impossible, to do in other self-management programmes (SMPs) e.g. enabling participants with high levels of social anxiety to engage in only the one-to-one sessions. This flexibility enables continued engagement for participants who may ordinarily drop out of group-based SMPs.

In trying to draw out the perceived mechanisms of change and what was different in this service, a number of personal and interpersonal themes emerged. For many, their experience of themselves, their health and their role in their health care behaviour had changed since attending the Programme.

Participants reported a number of factors that they perceived to support them in developing the foundations for better self-care and management, these included: developing self-worth through feeling valued and accepted, feeling supported through social contact and having opportunities to model health-directed behaviours. Participants also reported perceived direct therapeutic benefits as a stimulus to change and how the PCP had enabled them to increase self-monitoring, insight and acceptance of their conditions, e.g. better pacing. Many had developed more constructive attitudes and approaches, which had given them confidence in their ability to cope (increased self-efficacy) and their capacity to engage in practical self-sustaining activities (patient activation).

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It’s opened doors and opened doors in my mind because it’s given me a little taster of doing something different and I liked it ... It’s opened doors in the view of me wanting to do different things and to live a normal life … I don’t want to spend the rest of my life isolated and not have any contact with people so it’s just taking baby steps towards that now. I miss not having that contact really and I miss not having a normal life ... It’s sort of unlocked something really ... I wasn’t seeing anyone before at all apart from my family. It has helped me… It’s opened up doors that I do want to get back into reality and start living a proper life.

[Female, 58, carer, depression, social isolation]

Sustainability of reported outcomes

The final section of the report (Section 6) concludes by examining the degree to which participants reported a capacity to sustain the outcomes in relation to the core aim of the Programme, i.e. increased self-care and self-management. This aspect is where the PCP group exercise and workshops seemed to have had a greater role to play than the immediate benefits of the hands-on one-to-one therapeutic interventions. Each participant had taken at least a couple of techniques away from the PCP that they could use in their daily lives. Visualisation, meditation and relaxation techniques were being used on a regular basis by a good proportion of participants, even one year later. These techniques were particularly useful for those people with anxiety and depression. Almost all interviewed participants were engaged in some form of regular daily exercise, even if this was just taking a walk.

Itreally put me back on track. What it did was refresh a lot of what I probably knew that I’d forgotten about and actually encouraged me to do more of it. So now I’m doing a regular yoga class each week, which I find very, very beneficial. I’m also now having regular massage once a month, which I find very beneficial for tension and muscular aches and pains. I’m also having acupuncture once a month as well, which I find is fantastic for my pain. Whereas before, especially my back pain, it hasn’t made my back pain go away, but I used to get lots of referred pain all up my back through my shoulders into my neck and was holding myself very tense and now I find the pain is just focused where the problem is, where the mechanical problem is, and I can cope with that so much better.

[Male, 46, fibromyalgia, depression, hypermobility, pain, fatigue]

Many participants had taken up new activities and several in particular were now engaged in regular artistic activities. For those participants who could afford to pay privately, they had gone on to continue treatments that they had found beneficial to them on the PCP e.g. massage and acupuncture. A number had taken up low-cost interventions such as healing or group exercise classes. Several participants had already begun or offered to be a volunteer on subsequent PCPs.

I mean I’m hoping to carry on the energy healing because it changed my life, it honestly, honestly changed my life. I learned how to calm myself down and try to go back to sleep … From the person who didn’t want to see anybody, who didn’t want to face the world, I’ve become a person who put their name down for voluntary work because I feel safe.

[Female, 45, stress + anxiety, sciatica, weak bladder]

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1. Introduction

Background

The Positive Care Programme (PCP) was founded in 2004 and established as a charitable organisation by Dr Su Mason, former joint Head of the Clinical Trials Unit, (University of Leeds). The Programme evolved through informal discussions between practitioners and colleagues about an identified need for more ‘holistic’ support for people with long term health conditions. They recognised a ‘gap’ in NHS service provision, which conventionally is either medicines management and other physical-based interventions or self-care support based on more cognitive-based approaches.

The aim was to develop a programme that could address the whole person, providing tools and experiences aimed at ‘nurturing’ and ‘supporting’ their physical, mental/ emotional and spiritual needs and ultimately to empower people living with long-term conditions (LTCs) to live more ‘positive and fulfilling’ lives.

Touchstone

In 2009, after successfully piloting the Programme and supported by an encouraging small-scale evaluation, the trustees decided to transfer the funding and delivery of PCP to a partner organisation to support its long-term sustainability. Touchstone, a local Leeds based charity, was the logical partner as it had already supported the infrastructure and delivery of the Programme. Touchstone was established in 1982 with a remit to deliver community mental health and wellbeing services and has since diversified to become one of the leading health

and wellbeing charitable providers in the region, with excellent linkage to health and community support organisations in the area. The main remit of Touchstone is to ‘empower excluded people with the vision of inspiring communities and transforming lives’. For the past two years Touchstone has been supported by the Big Lottery Fund (BLF) to roll out five separate Programmes for over 300 people across the Leeds area.

Participants

The Programmes were open to participants over 18, who were either:

living with complex and difficult conditions, or

unpaid carers.

A small number of patient groups are excluded from the PCP, people with: severe learning difficulties, severe memory problems (dementia) and uncontrolled epilepsy. Touchstone also indicates that the PCP may not be suitable for participants with diagnoses of psychosis or where their mental health issues may prevent them from being able to engage with and benefit from the Programme. In these cases, Touchstone will liaise with, or request a letter, froma relevant healthcare professional stating that the Programme is likely to be of benefit. Participants are only permitted to attend one Programme, however, some participate in subsequent groups as volunteer helpers.

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Self-referral and recommendation

Entry onto the Programme is entirely by self-referral. Awareness of the PCP has grown significantly over the last few years. In part this has been through word of mouth recommendations from people who have attended previous Programmes. However, recommendation by health or social care professionals has grown to 50% which is in part due to participant feedback to care providers and also due to the increased availability of promotional information (posters and brochures) in local third sector and NHS primary care settings. Online referral forms can be downloaded from the Touchstone website.

Registration

Potential participants are invited to an introductory day, one week prior to the start of the Programme. This involves a presentation on the PCP and a one hour pre-booked individual registration appointment. If participants wish to join the Programme, they complete a registration pack with contact and medical details, a service user monitoring form to capture participant demographics and a signed consent form indicating that they are aware that the PCP does not aim to ‘cure’ them of their health condition(s). Touchstone views this as a kind of informal contract with participants and a means to ensure their expectations of the PCP are not unrealistic. At the initial appointment, participants are given a brochure explaining the Programme and are given the opportunity to explore their interests and preferences.

The Programme

The first two BLF funded Programmes ran for 24 weeks divided into four blocks of six 3 hour weekly sessions. In subsequent cohorts the Programme was reduced by one week per ‘block’, creating a 20 week Programme, split into four blocks of 5 weeks. The rationale for this was in part cost related but also the team perception was that the benefits reported by participants were beginning to ‘level out’ after 20 weeks. The weekly sessions ran consecutively, other than breaks for major holiday periods such as Christmas. Each week is divided into three types of activities:

One-to-one complementary therapies including: acupuncture, Emotional Freedom Technique, healing, Indian head massage, Reflexology, Therapeutic massage, and Shiatsu.

Group activities and gentle exercise including: Alexander Technique, Art Therapy, Dru Yoga, 2 types of meditation, and Tai Chi.

Group workshopsconsisting of four themes: ‘Being Friends with your Body’, ‘Mind, Body and Spirit’, ‘Positive Steps: Tools and Skills for Living’. These are a combination of taught and experiential sessions e.g. nutritional advice, therapeutic singing as well as visualisation, and self-massage techniques.

Patient choice: the booking system

Over the course of the Programme participants have the opportunity to experience four different complementary therapies, four different group exercise sessions and most of the group workshops. At the initial appointment, participants are given a timetable for the first ‘block’ of 5/6 sessions. This process is repeated at the end of each block where participants select a new set of activities for the following weeks.

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The PCP aims to offer a high degree of flexibility and participants are able to take extra sessions of some activities subject to availability. At the beginning of each session participants are given a personal folder containing their timetable and medical notes to take along to their sessions. These are deposited at the end of each day and held confidentially with Touchstone.

Routine evaluation

At the point of registering on the Programme participants are asked to complete two questionnaires, one a PROM (Patient Recorded Outcome Measure) which is widely used in the complementary therapy sector (Measure Your Concerns and Wellbeing – MYCaW) and Quality of Life measure commonly used in mainstream healthcare research (EuroQual). At the end of each block participants are asked to complete a simple evaluation form on the workshops and therapies, what they had found to be of benefit and any general feedback. At the end of the Programme a questionnaire ‘you and your project’ is used to gather more general feedback and pick up whether participants visit their GP less often and record any changes to medication. At the end of the Programme participants complete both the MYCaW and EuroQual questionnaires. The results are analysed by the PCP team based at Touchstone and the results of these can be found in Appendix 1.

Health Academix were commissioned to undertake an interview-based qualitative study to explore participants’ experiences and perceptions of benefit relating to participation in the Positive Care Programme for Long Term Conditions (PCP). This report provides an independent assessment of PCP from the perspective of its users.

Study Aims

The aim of the study was to gain an understanding of the perceived quality and benefits of the Positive Care Programme. The specific objectives were:

(i) To assess the perceived quality of the process of care as experienced by participants.

(ii) To explore the manner in which any health and wellbeing benefits experienced are attributed to the Programme by the participants.

(iii) To gain an understanding, from the participants’ perspective, of the mechanisms by which this multi-faceted Programme might deliver these benefits.

Study methods

To meet the aims of the project the following methodology was employed.

Data collection

Face-to-face, semi-structured interviews were conducted with 23 participants who had attended one of the first three BLF funded Positive Care Programmes (PCP1, PCP2 and PCP3). PCP 1 was delivered in North Leeds in a community building called Burley Lodge and PCP2 and 3 were delivered in a social and community enterprise centre called Hillside. Interviews were conducted by JW and HP at either one of the Touchstone facilities or, in a few cases, at the participants’ home address. All potential interviewees received an information sheet and signed a consent form if they were willing to participate in an interview. All interviews were digitally recorded and fully transcribed.

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Data Analysis

Digital recordings of the interviews were fully transcribed and analysed thematically using a ‘framework’ approach which is frequently used in applied policy research.7This technique provides a flexible structure for incorporating both the ‘a priori’ issues covered in the topic guides, as well as allowing for new themes to emerge from the data.

Sample structure

Two separate cohorts of PCP participants were selected for the study.

Cohort 1 ‘Sustainability Group’: Consisting of people who had completed one of the 24-week Programmes which ran up to April 2011 (PCP 1 & 2).

Cohort 2 ‘Recent Completers’: The second cohort includes participants who had recently completed the 20-week PCP in February 2012 (PCP 3).

This sample structure was designed to enable an exploration of issues relating to the perceived benefits and mechanisms of PCP in all three groups, but also to explore long-term perceptions of benefit (‘sustainability’) in the first cohort (PCP 1 & 2), and more immediate perceptions of quality and mechanisms in the second cohort (PCP 3).

Topic guide development

Interview topic guides were prepared in consultation with Touchstone to reflect the two cohorts in the sample (Appendices 2 & 3). Both topic guides reflect the overall aims of the study. See Appendix 4 for examples of the questions that were asked during the interviews.

Identification of sample and recruitment of participants

A total of 187 participants were registered on three separate Positive Care Programmes (PCP 1 = 63 participants, PCP2 = 58 and PCP3 =66 ). Participants who were invited to be interviewed were identified from anonymised Touchstone records. The main inclusion criterion was a minimum attendance rate of 50% of each course i.e. at least 12 sessions of the 24 week Programmes (PCP 2 & 3) and at least 10 sessions of the 20 week Programme (PCP 3). The rationale for this was to ensure that interviewees had experienced substantial contact with the Programme. The sample does not include PCP registrants who decided not to attend after the first few sessions and therefore this report does not comment on reasons why participants did not continue participation in the Programme.

PCP 1 and 2 participants had attended an average of 9 of 24 sessions, with 36% attending 12 or more sessions (43/121). Participants on the 20 week Programme (PCP 3) attended an average of 11 of 20, with 61% attending at least 10 of the 20 sessions (40/66). The only exclusion criterion was participant vulnerability/unsuitability for interview as assessed by Touchstone. Potential participants were contacted directly by Touchstone on behalf of Health Academix inviting them to undertake a single research interview lasting approximately one hour at a Touchstone office or in their own home. The invitation letter gave information on the research project (Appendix 5), and included a consent form (Appendix 6) and a stamped, addressed envelope. Consent forms were returned to Touchstone and passed to Health Academics to contact participants directly by telephone to discuss the research further and, with the agreement of the participant, to arrange an appropriate time and venue for an interview.

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Response rates and sample characteristics

83 participants met the criteria for inclusion in the study. Of these, 34% consented to be interviewed (n = 28). Four people were unable to contribute within the time-frame that the interviews were being conducted and one person dropped out for unknown reasons. The remaining 23 participants who were interviewed met the purposive sampling criteria that had been drawn up to ensure the sample broadly reflected the demographics of all participants in terms of gender, age, carer status and ethnic backgrounds.

A total of 187 participants were registered on three separate Positive Care Programmes (PCP1 = 63 participants, PCP2 = 58 and PCP3 =66). Of these, 70% were female and 24% male (6% missing data). Our sample included a higher percentage of males 34%.

The average age of interviewees was 51 years and ranged between 32 and 68. This compares with an average age of 46 for all participants with ages ranging between 18 and 78 years. Chart 1 below indicates that the age distribution in the sample included a greater percentage of people aged between 39 and 65.

Chart 1: Percentage age distribution of the total sample and population

Chart 2 compares the number of carers interviewed with the total number of participants. Six of the interviewees had identified themselves as carers which constituted 26% of the sample which closely matches the 24% of the total number of participants (n = 44).

Chart 2: Percentages of carers in the sample compared with all participants

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Chart 3 indicates that a fairly representative sample was achieved in relation to ethnic background.

Chart 3: Distribution of ethnic backgrounds between the sample and all participants

These figures are also presented in Table 1 below.

Table 1: Ethnic background of all participants and the sample interviewed

Ethnicity Sample All participants

White British 13 121

White Irish 1 1

White Other 2 8

Total White British or other 16 (70%) 132 (71%)

African 1 8

Caribbean 1 4

Total Black or Black British 2 (9%) 12 (6%)

Bangladeshi 0 2

Indian 3 9

Pakistani 0 9

Other Asian background 0 4

Total Asian or Asian British 3 (13%) 15 (12%)

White and Black Caribbean 0 1

White and Black African 0 2

White and Asian 0 1

Other mixed background 1 3

Total Mixed ethnic background 1 (4%) 7 (2%)

Other Ethnic background 1 (4%) 1 (0%)

Not known 0 (0%) 11 (7%)

Total numbers 23 187

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2. Profile of participants of the Positive Care Programme

In this section we describe the range of health issues reported by PCP participants, their expressed reasons for attending the Programme, and their expectations of the Programme.

Presenting health conditions

Participants in our sample presented with a wide range of physical and mental health conditions and associated symptoms. Stress, anxiety and depression were aspects of most people’s lives. For a significant proportion it was their primary health concern but for others this was a secondary component resulting from the impact of living with long term physical ill health. A third had ‘hard to treat’ conditions such as Fibromyalgia and ME. Others suffered with chronic pain due to accidents, operations or degenerative conditions and many were dealing with a combination, as listed below.

Musculoskeletal Pain and stiffness

Low back pain Joint pain and swelling Headaches Neck and shoulder pain Trapped nerve Sciatica Spondylitis

Psychological problems

Depression Anxiety and stress Social phobia Schizophrenia Suicidal tendencies

Hard to treat/diagnose conditions

Fibromyalgia ME Sjogren’s Syndrome Sudden onset paralysis Polycystic ovaries Irritable Bowel Syndrome Celiac’s Disease

Other physical symptoms/conditions Incontinence Fatigue Gall stones Prolapsed bladder Lymphedema (resulting from radiotherapy) Gastric problems (resulting from chemotherapy)

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Participants’ health status and impact on daily lives

Interview participants were asked to describe their health status and the impact of their health condition on their daily life. The resulting data revealed four groups of participants: common to all these groups was that a significant proportion had lost their jobs due toillness.

1. Participants with mental health issues seeking relief from symptoms relating to anxiety and depression(lack of confidence and self-esteem, social isolation)

2. Participants with physical problems seeking relief from symptoms relating to conditions that are hard to treat(e.g. fibromyalgia, ME)

3. Participants with predominantly physical problems who acknowledged that stress and anxiety were elements they were seeking to address.

4. Participants with physically debilitating conditions and associated pain with limited acknowledgement/sense of psychological impact

The health status found in each of these groups and the impact on daily life will now be illustrated in turn.

1. Participants with mental health issues seeking relief from symptoms relating to anxiety and depression (confidence, self-esteem, social isolation).

A number of participants in our sample highlighted the wider social impacts of living with depression and anxiety, leading to social isolation as well as job loss:

I was going through sort of anxiety and depression ... I didn’t really look forward to much to be honest … I didn’t have much motivation, self-confidence, self-esteem, I’d lost my job, basically I’d lost my job due to my health condition … it ended very abruptly and that was quite a shock to me because I suffer from anxiety and depression … I sort of such shut myself off, because the way I lost my job I think it really, really knocked my confidence levels down, I sort of shut myself off from everything and I was feeling quite high anxiety … not seeing many friends, not socialising.

[Male, 43, anxiety and depression, RTA neck injury]

The following quotes reflect many participants’ reported experiences of how a combination of significant life events had negatively impacted on their health. Commonly these participants had prior experience of NHS psychotherapy and/or counselling via IAPT and were searching for continued support.

Well I took early retirement through stress after twenty five years teaching. I was trying to do a lot of self-help things myself and trying to do voluntary work, but then sadly my daughter died and after that everything went to pieces. It took five years to have the inquest into her death and after that I went really down. So I’d had counselling and psychotherapy and this Programme seemed to come just when I’d finished the psychotherapy and I was what I could do now.

[Female, 57, bereavement, stress]

I were made redundant …. I were on sick for a long time before … I did have bouts, before I used to go on anti-depressants, tried this and tried that and never tried Counselling so much until these last couple of years and everything sort of, summat inside me were just saying that sommat’s gone wrong like a mechanism that needs mending and I kept shouting at people. I did shout sometimes just to get help and I was just going round in circles ... Best thing I ever got were PCP.

[Male, 55, depression, back pain, high BP + cholesterol]

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2. Participants with physical problems seeking relief from symptoms relating to conditions that are hard to treat (e.g. fibromyalgia, ME).

Several participants had auto-immune related conditions which, for some, were quite complex and had many related symptoms cuch as ‘brain fog’, musculoskeletal pain and stiffness, fatigue and problems with digestion:

They were really being helpful because with celiac disease and the Sjögren, I don’t have a very good digestive system and stomach wise it is very difficult to tolerate any of the normal medicines despite … I mean, that is what the hospital people have to give you because they can’t give you anything else, but I am just not able to tolerate them. So, there isn’t any alternative, except alternative medicines.

[Female, 68, Sjögren’s syndrome, celiac disease, fatigue, LBP]

I’ve got fibromyalgia, ME, spondylitis, IBS, polycystic ovaries. Apparently I’ve got gall stones as well and a prolapsed bladder. So it’s, sort of, all falling apart at the minute. So it’s just, sort of, trying to keep on top of it, … I didn’t know from one day to the next if I was going to be all right or not … I could go to sleep absolutely fine and wake up and not be able to move and just getting out of bed to make a drink or to go the toilet, I just couldn’t do it and in the end my sons ended up having to try and lift me out of bed and sit me on a commode and it’s not a nice way to go, you know.

[Female, 50, fibromyalgia, ME, spondylitis, IBS, PCOs]

The following quote from a participant with ME reflects the comments of another participant with the same diagnosis. Her expectation of the Programme was that it would help her to develop new skills to improve self-management and prepare her to return to work:

I have ME I’ve had it for about eight years. For the last two years I’ve not worked because of it, I was on long term sick to begin with. Then they did the assessment to see whether I was capable of returning and I wasn’t fit for purpose. So I took early redundancy. It was while I was off on long-term sick that I remembered about this, [Positive Care Programme] rang one of my colleagues and asked them to get me the number. Then I did a self-referral … Just to try and help me get a handle on the ME and I think probably to help me get ready to get back to work, probably. But more about getting a handle on it, find ways to work with it and probably get me more settled so I could go back to work.

[Female, 58,ME, fatigue, musculoskeletal pain]

3. Participants with predominantly physical problems who acknowledged that stress and anxiety were elements they were seeking to address.

The statements below are typical of those participants who described the considerable psychological and emotional impacts the limitations that heir physical condition had imposed:

Basically I’ve got ... chronic sciatica … permanent low back pain and left leg pain. I had an accident in ’99 and they operated in June 2000 and it were great for three days and then it went, the disc split again. Well it totally wiped everything I did … [before] I was totally active, I was training five, six days a week, working as well, active job. I finished work [in] 2000 and I’ve never worked again ... All my sports gone. I don’t play any sports any more, I can’t do that. It’s just totally ripped my life apart. Seriously, I’ve been through depression, really to the bottom. I’ve been in the bath three times with a Stanley knife. Sat there, really, do I want to carry on?

[Male, 39, RTA, nerve compression, sciatica, depression]

I havechronic osteomyelitis in my femur so I’ve got chronic pain. I’ve suffered with chronic osteomyelitis since I was eight years old. I’m fifty one now. I’ve had about twenty-eight operations

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on my leg, twelve of them were major operations … I find it very hard to shut down. I think when you’re in pain and you’ve got all sorts going on in your head … I suffer from chronic pain twenty four hours a day, I cry and I’ve no outlet, I’ve no money, I’ve nowhere to go ... I haven’t got no life. I’m stuck in here because I can’t go far … Carpets been ripped from under my feet. I’ve come from a good job to living on benefit.

[Female, 50, low back pain, depression, social isolation]

4. Participants with physically debilitating conditions and associated pain with limited acknowledgement/sense of psychological impact.

Most participants discussed the psychological impact of living with physical conditions with the exception of one participant. His discussion primarily focused on his physical health and the problems it created with regards to pain medication management and mobility:

My knees are secondary, because, like the pain in them is … tolerable as long as I don’t dash about anywhere … or don’t do much walking and what not and because of my back I’m limited to how much walking about I do anyway so, you know it’s … because of me back, that’s taking precedence and the knees’ a secondary thing but like … But I’m [having] a good day then, but when I’m on a bad day, I can’t breathe, I can’t move, I can’t walk I can’t do nowt and people never see me in this position because I always make sure I’m fully medicated up before I go out.

[Male, 55, back pain - DDD, arthritis, antidepressants]

He made few references to the emotional/psychological impact that his chronic pain condition had on his life, despite acknowledging that his condition had negatively affected his relationships with friends and family. In addition he was taking anti-depressants prescribed by his GP for controlling his stress levels which had been exacerbated by difficulties experienced over a long period of time in being awarded appropriate state benefits.

Reasons for participating in the Programme

Interview participants had been introduced or recommended to the Programme through a range of different routes, including: previous PCP participant’s recommendations, Touchstone key-workers, and IAPT counsellors. One participant had prior personal knowledge of the PCP through contact with Touchstone in relation to their job.

The first theme identified in relation to reasons for going on the PCP Programmewas that it provided the chance for people to explore a range of different therapeutic interventions. This element is explored in more detail in relation to aspects of informed choice in section 3. A good proportion of interviewees had some prior experience of interventions that were similar to those provided on the PCP and had been particularly enthusiastic about having an opportunity to experience other forms of ‘complementary’ or ‘alternative’ therapeutic interventions.

I had some information on it initially just to say that there’s a number of therapies there, and … there’s a number of workshops and stuff and you can try them all, that’s all I knew and I had some sort of hand-outs … basically giving me some insight of what the Programme would involve and I was quite excited about it ‘cos it mentioned … massage therapy ... Acupuncture and Indian head massage and things, and I have used some of those therapies in the past … So I thought, oh that’s good, becausewith my sort of condition I need those kind of therapies, … I was experiencing quite high anxiety …. I feel those help a lot … I just wanted to find out what was out there, different therapies and what they would offer.


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I’m familiar with the yoga anyway … I’ve practised before yeah, but I’ve never heard of dru yoga, it is some specific form… I was determined to complete it and see what happens … I’d never even heard about reflexology and acupuncture etc … so I want to try them ... find out more.

[Male, 64, schizophrenia, sleep problems]

A second theme was unmet health and wellbeing needs. This was mostly discussed in retrospect in relation to participants having identified needs that were fulfilled by the Programme. These aspects are covered in more detail in section 4. For participants with hard to treat conditions and those who had exhausted ‘conventional’ NHS options, this was a significant driver to attend the Programme.

I have ME, it took a while to get a diagnosis, which is many years ago and it is very poorly understood by the medical profession and they don’t know what to do with people like me and they don’t seem to have … the impression I have repeatedly is they, not only do they not know what to do with me but they don’t seem to have any responsibility towards, well just carry on as you are sort of thing isn’t particularly moving you forward. So I wanted to change all that.

[Male, 50, ME, musculoskeletal pain + stiffness and fatigue]

Well the injections, “You can’t have them anymore because they’re too dangerous. All they’re going to do is stick with oral medication so you’ve got to have something else to have a go at. So give it a try, if it don’t work for you it don’t work, but if you don’t try it you never know.


The NHS is all by appointments system, you go, you come and you’ve done it and they expect you to move on. If you don’t move on there’s no alternative, there’s nothing else they can offer you as such that’s what I found.

[Female, 46, carer, sciatica, LBP, ruptured disc, nerve compression]

The following comments confirm that the process of completing the consent form at the first session had given participants realistic expectations in terms of understanding that the aim of the Programme was not about cure, rather improved self-management.

They made it quite clear that ... they didn’t guarantee that it would cure us of the depression or something like that…But it might [help] toward that…I’ve been taking this medicine for more than two years … I take for depression and schizophrenia … so I thought I might try this one as well ... I did not really expect to [stop taking medicines].


The third theme or driver for attending the Programme was to try out interventions that might alleviate specific symptoms especially relief from physical pain, stress and anxiety.

I suppose I don’t acknowledge my symptoms in some ways … it would be nice to have some pain relief, just I think [focus] more on sort of positive things generally. Just a boost to keep that going, doing other things … I think just the idea that there was a group of people trying to do something positive about long term situations. It wasn’t really much medical related, I’m not personally keen on medication and I’m quite interested in alternative health and that sort of thing.

[Female, 64, Raynaud’s syndrome, fibromyalgia]

It’s comforting and although I know it’s only a temporary measure I thought well it’ll do me, I’ll have a day out ... pleasurable day at least … and they might touch a nerve … it might do summat else as well and with regular treatment it might improve it [chronic back pain]…


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Many interviewees had symptoms of anxiety and depression, regardless of whether that was their main presenting ‘condition’ or a result of the impact of a long term physical condition.

I’ve been struggling with attacks of paralysis since I was 20 and they don’t know what it is. I’ve had some tests, I’ve had so many second opinions and everything and it’s not epilepsy but it’s still happening. So what I’ve been doing is trying to calm myself down ... So that’s why she [caseworker at Touchtone] suggested the PCP.

[Female, 41, carer, agoraphobia, stress and anxiety]

A significant proportion of interviewees discussed the negative impact of their health status on their levels of self-confidence and self-esteem Many of the participants who joined the PCP described how, prior to the PCP, they had experienced social isolation and lack of support in dealing with the issues they faced. In some cases this was quite marked,irrespective of whether this was due to physical or psychological reasons.For several participants this had been a key driver for attending the Programme.

I was going through a bad period and I’d had cancer … isolated at home and she’d [her daughter] learned … that there was this Programme going where it’s supposed to help you, bring you out into … society again … Up to then we’d felt as though we’re coping, but after that, I went into a place of my own and I don’t think the family could reach me. So I needed some outside help really.

[Female, 54, lymphedema, post-cancer, Fibromyalgia]

Mainly to build my confidence up that I’d lost … I was there to address anxiety and depression after what I’d gone through in 2010 … I was a wreck ... all they needed to know was that I’d got severe depression, anxiety and stress. I wanted the person that I used to be back.


Being able to socialise because I haven’t got no life. I’m stuck in here because I can’t go far, I can only walk about twenty yards…


I thought it’d be good for my confidence. Because I’m quite isolated and I don’t see people so I thought it’d be good to try and see if I could do it.


Several participants commented on the impact of having to give up work on grounds of ill-health. Some participants were already at the stage where they were seeking ways to better manage their condition to enable them to re-enter the job market, for others the priority was to take the first steps back into a ‘normal’ life.

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Carers

The interview sample also included carers of people with long-term conditions. Several participants had caring responsibilities for family members, commonly elderly parents but all came with long-term conditions for which they were seeking support. Only two participants could be described as full-time ‘carers’, both had attended with the person they care for, and they too came with health related problems of their own. For this reason we have incorporated the majority of the feedback from carers into the main findings of the report.

The following participant explains how caring for various members of her family had led to a loss of confidence and fatigue which resulted in her having to give up her job.

I’m a qualified social worker so I had quite a good job, you know, and I was under a tremendous amount of stress. I mean extreme stress with my caring responsibilities. My daughter had had a psychotic breakdown and she was very, very ill and hospitalised and I had to take eight months off work to care for her, after which I lost confidence and…this is ten years ago but then lots of other things happened. I went through a separation and all sorts has happened, you know. A lot of it is just life events, but I seem to have more than a fair share. My son had a breakdown and I just see that I don’t often get a patch of stress-free, you know. So to try and get some confidence back, eventually I got this voluntary job and it was only like a couple of times a week, but I ended up having to leave there because I was falling asleep, you know, all the time.

[Female, 58, ME, carer, stress and depression]

The other carer in our sample, who accompanied his wife on the Programme, exemplified ‘hard to reach’ clients in terms of upstream preventative Health and Social Care provision. He had supported his wife and their two children, in a tight knit, closed family environment, over many years. Firstly, his wife had lost her job due to Fibromyalgia which had been diagnosed over a decade previously. Further to that she had developed two types of breast cancer and her treatment had involved chemotherapy and radiotherapy which had created lymphedema and gastric problems for which she had to take regular medication. In the middle of this they had endured an extremely difficult family situation which had wrought significant emotional impact on them both.

They came to the PCP Programme at a point where the cracks were really beginning to show after their son, who was still living at home, lost his job after a nervous breakdown. Their daughter had found about the PCP through a work colleague. At the time of entering the Programme the carer suffered from a painful and swollen knee and a ‘bad elbow’. Both acknowledged in retrospect that they had been under a great deal of stress having tried to keep their anxieties pretty much to themselves.

Whilst participants with caring roles were able to identify the need for support for their own health and wellbeing, he discussed ‘feeling guilty’ about having the opportunity to go on the Programme as a ‘carer’, and compared himself to others on the Programme who had far greater health needs. He was persuaded by his wife to attend the Programme after learning that carers could attend. His wife very much valued the fact that he was receiving support as a carer and was very appreciative of the opportunity for him to take part. He had initially rationalised his engagement by the fact that he ‘might as well’ attend the Programme than sit outside in his car waiting for his wife.

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Expectations of the Programme

Participants with few prior experiences or knowledge of the types of interventions, exercises and workshops provided on the PCP reported fewer expectations of the potential benefits. For some it was just a sense that it would ‘help’.

I don’t know that I was entirely aware of what therapies they were going to offer, except I knew it was a positive Programme, obviously from its name, and it would be helpful. It [PCP] conjured the idea that it would be something that would help me and assist me.


I mean I didn’t know anything about it, it was just totally new, really, the extent of it.…when they explained it ... that it was, you could have therapeutic treatments, then there was group sessions, then you could have a bit of one to one talk, so there was things within that where I thought it would help me.


I didn’t really find out much until I actually went because I just didn’t know what to expect, but because I used to be a therapist myself, I thought well, you know, nothing’s going to be that bad really. So, I’ve got a vague idea I might not like it, but it doesn’t mean it’s not going to help, you know … I just got to a point where I thought I need to try something.


Participants with no previous experience of these types of interventions at all were more likely to report that they were quite sceptical of aspects of the Programme at the outset, whereas most others had tried to keep an open mind.

I didn’t know what to expect [regarding the range of therapies]… I didn’t really read all the … pamphlets and what not… I think it [the initial assessment] was about half an hour or so yes, but I still wa’nt sure what to expect, you know, especially after the first one I went to … they were all a bit brief …in how you went…you approached, you were a bit unsure what was going off…


My friendwas going … she told me that things that you did that you could benefit from. She told me there were classes you could go to, she warned me that there might be some I’d find naff but there’d be others I might quite like…Before I went they ... sent me this form asking me how I believed I’d benefit from the Programme. To be fair I didn’t know much about the Programme ... I didn’t look it up because ... I wanted to go in my eyes shut and see what I was going to gain from it. I didn’t want any expectations. I just wanted to go and look at it and see what I’d gain, beneficial to me.


The following participant expressed high expectations of the Programme, with respect to anticipated quality of care. One of the deciding factors to attend the Programme was his perception was that it offered more assurances and a greater level of professionalism than private sector providers.

It’s quite unregulated [the Complementary Therapy sector] ... So it’s knowing that they would be a bona fide person I suppose … the fact that it was under the umbrella of Positive Care, it felt to me like it would be … moreof a safer environment, more ethical from that point of view … because I mean I’m aware of quite a few people who have felt cheated or there has been some unhappy aspect to what they have received, not to do with Positive Care. But just stick a pin in it and hope and I didn’t want to do that.


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Summary

Participants in our sample presented with a wide range of physical and mental health conditions and associated symptoms. Stress, anxiety and depression were aspects of most people’s lives. For a significant proportion it was their primary health concern, but for others this was a secondary component and a result of the impact of living with long term physical ill health.

Participants were introduced or recommended to the Programme through a range of different routes, including: previous PCP participants, Touchstone key-workers, and IAPT therapists of counsellors. Reasons for attending included the opportunity to explore a range of different therapeutic interventions, unmet health and wellbeing needs and the desire to try out interventions that might alleviate specific symptoms. Participants with very little experience or knowledge of the types of interventions that were provided on the Programme reported fewer expectations of the potential benefits. For some it was just a vague sense that it would ‘help’.

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3. Perceived quality of the process of care as experienced by participants

This section of the report examines the themes that emerged in relation to the perceived quality of the process of care as experienced by interviewed participants. This included equity of access, the experience of personalised care and the exercise of choice. As the exercise of choice was the main mechanism by which the experience of personalised care was achieved, it is discussed in detail below. Other themes related to issues of dignity and respect, and perceptions of the organisation and infrastructure of the Programme.

Participants described how the staff and volunteers went out of their way to create a welcoming and supportive environment in which they felt respected and accepted.Those participants with very low levels of self-esteem in particular valued being in what they referred to as a ‘safe’ and ‘caring’ environment. Many contrasted their experiences of the PCP to NHS services, in relation to this and with respect to the quality and attention to detail to their health needs. Many comments reflected a sense of co-production between participants and PCP staff in working together to improve participants’ sense of wellbeing and capacity to self-manage.

Whilst acknowledging that the one-to-one complementary therapy sessions were ‘only supposed to be a taster’, many participants said that they would have liked to have had more sessions of these types of interventions, over a longer period of time. Some participants did manage to have extra sessions of their preferred intervention or activity. Others had slightly less choice, which was generally the case for participants who had joined the Programme a week or so after it had started, as many of the activities and therapies were fully booked. Some participants suggested having more ‘taster’ sessions during the first block so that they could hone down their preferences and have more sessions of the interventions that they felt were ‘working’ for them. They did appreciate the financial and logistical implications of being able to do this.

The Programme was generally perceived to be very well run and participants were struck by the friendly, welcoming, helpful nature of the staff, volunteers and, in particular, the Programme co-ordinator.

A central area was provided at each of the premises the PCP was being delivered from to provide a space for participants to relax, have refreshments, read various books and CDs on topics relating to the content of the course that were available to loan or buy. Many participants commented on the flexible nature of the PCP in terms of being able to go in and out of sessions and relax in the central area according to their needs. Most participants appreciated the fact that people may be late to a session because they had limited mobility and were dependent on public transport or needed to take a moment after a particularly emotional session.The following sections examine these issues in more depth.

Accessibility: equity of access

For many of the participants, there was an appreciation for having the possibility to gain access to interventions that they were previously unable to afford in the private sector and for which there was limited access via conventional NHS routes.

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... the chance to do all of the therapies, because I wouldn’t have been able to afford to just try them out normally … it’s money, money, money and I’ve got other things to, you know, got things on direct debits and just, yeah, life. So, yeah, adds up.


Any programme that supplies alternative medicines and alternative therapies is so invaluable and because of my experiences with hospitals and so on and generally with GPs, who can’t supply anything like that.


Many participants commented on how access to the PCP should be broadened and that a greater awareness among primary care professionals, especially GPs, was needed.

Personalised care and the exercise of choice

Gaining access to therapies which would not ordinarily be accessible to participants was clearly important to many. However, the opportunity to exercise choice in creating a personalised plan within the Programme was the dominant theme in relation to the experience of the process of care. One of the most interesting elements of the Programme relates to participants’ choices of the health and wellbeing interventions on offer. Participants reported that they were able to explore a wide range of therapies and tailor their choices with respect to their health and wellbeing needs and were given opportunities to find out experientially what ‘worked’ for them.

As described in the introduction to this report, at the outset of the Programme participants had an initial assessment interview as part of the registration process. This gave them an opportunity to discuss their health needs and the content of the Programme, and decide upon their choices for the first ‘block’ of 5/6 week sessions. As detailed in the introduction to this report, each 3 hour weekly session was divided equally between: one-to-one therapeutic interventions, group exercise/therapeutic sessions and group educational workshops. The Programme consisted of four ‘blocks’ of 5/6 week sessions and at the end of each block participants selected their options for the following 5/6 weeks. Their choices were based on a number of different factors which are described below. One of the most interesting elements of the PCP was the fact that participants were given the opportunity to explore their preferences for treatments via their experiences of those interventions provided on the Positive Care Programme i.e. what participants often referred to as the opportunity to have a ‘taster’ of what each entailed.

Factors enabling choice and personalised care within the Programme

Participants reported a range of factors that enabled them to make informed choices and personalise their care within the Programme.

Knowledge and prior experience in making choices Triage: choice based on participant’s needs Opportunities to establish preferences through experience Flexibility to accommodate participants’ needs Opportunities to focus on preferred interventions Tailoring services to meet need: weekly re-assessments of healthcare priorities

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The role of knowledge and prior experience in making choices

The range of participants’ prior experiences of alternative or complementary interventions, their perceptions and approach to the Programme fell into three broad types:

Prior experience and open to different interventions and perspectives Limited or no experience of complementary therapies, therapeutic exercise and open to new

interventions and perspective No/limited experience and sceptical of certain interventions/exercises

Some participants based their choices of interventions on prior experiences and what they felt had or had not ‘worked’ for them in the past.

Acupuncture I’ve had before ... and I thought well that’s definitely worked for me in the past … [massage]…I’ve had that before as well…Indian head massage ... and again that really has helped me a lot … I sort of knew what I was going to experience.


… did not do healing because I had a psychic healer friend … and he did a session for me and he put a hand on my back like some electrical type passed here, so it was quite good, but it did not have any permanent effect so I did not take to it.


The following participant was seeking treatment primarily to help with anxiety and stress reduction/relaxation and help in developing a new perspective on their illness, had undertaken online searches to prioritise what he thought he could benefit from the most, what each of the interventions involved and any potential adverse effects.

One of the reasons was that I just had to prioritise and I thought I might actually get more out of the massage … I’d got in my mind a sort of pecking order … I’ve got to maximize my opportunities and okay I’ve got four rotations, what are my most important things … I tried to read up on them a little bit.


Using prior experience to guide choices within the Programme was not an option for some participants, and some were initially quite sceptical about the potential benefits of the PCP:

I had no idea. At first I thought it was going to be absolute rubbish, just a waste of time I really wasn’t looking forward to it … because I haven’t been to anything like that. I’ve never thought about alternative therapies so it wasn’t something I was bothered with … but I really was surprised, especially after a couple of weeks.

[Female, 44, long-term depression, RTA, chronic leg pain]

Triage: choice based on participant’s needs

Participants were given an opportunity to discuss their condition and needs during the initial assessment and were sometimes facilitated in their choice if they had very little/no prior experience.They valued being asked at the outset about what they hoped to achieve from attending the Programme.

I think one of the things, we were asked to say ‘what are you here for?’ ‘What do you want to get out of that’, which was a nice thing to focus on. I can remember putting the ability to relax and

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something to sort of negate the effects of anxiety, would be a good thing, and probably still feel that, that was a big thing for me.


… they asked you what you wanted to get from the Programme, which I didn’t fully understand,but, I explained I were a bit anxious and a bit upset so they said well straight away we’ll get you into one of relaxation, so they took me down and they did a head massage on me…


Opportunities to establish preferences through experience: enabling choice

One of the most valuable experiences reported by participants was that of being able to actually have the experience of a range of interventions.

I thought it [the information] was very good, obviously it can’t prepare you until you experience it.

[Female, 64,Raynaud’s syndrome, fibromyalgia]

This enabled them to make better-informed choices about the types of therapies and self-care practices that they could potentially explore further on the PCP or once the Programme had ended. This resonates with one of the principal aims of the Programme which is to reach participants who ordinarily have no access to the types of services available on the PCP. Informed choice was very much enabled through their experiences as participants were able to gain a more in-depth understanding of what each intervention entailed and whether it ‘worked for them’ in some way. Many participants commented on this aspect of the Programme in particular.

I did [it] because I’ve never done it before. One good thing about the Positive Care Programme because there’s such a wide range of things to do and things to experience, if you’ve never done them before, it’s good because it just gives you a little taster and you can find out what works for you and what doesn’t work for you… I suppose I mainly went for what I found was beneficial for me. I think it’s been very good because it’s such a wide range of topics and activities, there’s something for everybody and you can have taster sessions and find out what’s helpful physically and mentally…I did things that I found helpful, like I was always at the art.

[Female, 49, carer, depression, knee operation for damaged cartilage]

Well, the strange thing was the one that. I definitely wasn’t having was acupuncture, nobody was going to stick needles in me, but I actually got more out of that than anything else, but that was partly because of the therapist because she was so… I don’t know, so warm and so… she seemed really experienced and she took all your nerves away, you know, by talking to you about it and she explained everything. So I learned a bit about acupuncture, which I had no idea, so I kind of understood a lot more about it and then little things like, you know, she was chatting to me one day and we were talking about books and things and she lent me a book, which I’ve got to get back to her, it’s still over there. She lent me a book on arthritis, you know, natural cures and things and, yeah, I just really enjoyed that time with her. There was a young lady there as well, another acupuncturist, she was qualified but quite young and she also was really lovely, you know. So, it was great.


Often participants had based their choices on a combination of factors, for example one participant selected options based on: a. What she had tried prior to the PCP (massage and acupuncture), b. what she was interested in (art), c. de-selection (shiatsu because it was on the floor and she had ‘bad’ knees) and d. trying things out on the PCP and then deciding it was

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either beneficial (Art – and thus took extra sessions) or not (Emotional Freedom Technique – tried it once and decided not to continue). Choice was a repeated process throughout the Programme. Participants not only made decisions about their treatment and group work activities at the entry point and at the end of each 5 or 6 week ‘block’ but also revisited and adjusted their decisions at other time-points, including weekly therapy sessions. The importance of these aspects as a mechanism for empowering participants and improving self-management skills is discussed in more detail in section 5.

Flexibility to accommodate participants’ needs/interests

Participants reported a high degree of satisfaction with the flexibility offered within the Programme described how the staff went out of their way to accommodate participants’ needs and any concerns regarding their medical conditions, preferences and potential medical contraindications.

In one case a participant who had lymphedema after radiotherapy for breast cancer and was unable to have any type of injection in her arms was encouraged to have acupuncture by her husband (her carer and also a participant in the PCP) who had discussed her medical issues and the possibility of acupuncture for his wife with the acupuncturist during one of his own treatment sessions.

I didn’t believe that I could have acupuncture because I can’t have any needles in my arms … because of the lymphatic system … So, this worried me and plus I didn’t know how it would affect the lymphatic drainage with this acupuncture, I were a bit confused but they said no, yes come down we can deal with it, because you don’t have to use your arms,…there’s other areas we can put the needles in.


For participants who had extremely low self-confidence and self-esteem and experienced social anxiety and difficulties with being in group situations, the flexibility offered within the Programme to focus on one-to-one sessions was very much appreciated and essential to their on-going participation. The following participant explains how she was able to participate in the healing session, which, although taking places in a group environment, as she didn’t have to interact with other people in the room.

Yes. I really liked that. You’re in a group of people in there but you’re not working as a group. You’re still working on a one to one even though it’s a small group of people in a circle. So you’re not actually interacting with people other than that one person, that’s doing the healing.


It was like well how on earth is this going to help but I’ll give it a go. But then when I started it was just like okay. I hated groups … and it was like oh God and it was like loads and loads of people. But then you don’t get forced into anything and you don’t get pushed into anything and everybody helps. The staff were fantastic, if you didn’t like something, she’d tweak it and then you could do something else so you weren’t stuck with that Programme for twelve weeks.

Female, 40, depression + anxiety, sleep problems, RTA]

…and the people there were really kind, very accommodating … they just talked me through what the Programme was ... and that it was flexible and if you were not happy with anything I could talk to one of the advisors about it, or I could take part and see what it’s about and if I’m not happy I can drop out of a particular class, if I wanted to … so it was very, very accommodating ... it’s very flexible… They weren’t trying to force you into it. They were enthusiastic about what they did but

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they didn’t force you. On the time when I stood back and said … ‘it’s not for me’, they were just ‘fair enough’… I think the Positive Care Programme is very much sort of the respect for people and the acceptance of people where they are and not ‘you will do’ and ‘this is good for you so’. They’re very much sort of ‘have you thought about this’ and ‘have you tried that’.


This latter comment resonates with those of others regarding their appreciation of the flexibility in the Programme in terms of ‘not having to do’ anything they did not want to do.

I went to one [singing class] and that was it, I changed to art.They were really okay that you didn’t do anything you didn’t want.


Opportunities to focus on preferred interventions

In a number of cases, participants had opportunities to have more than one block of their preferred intervention or group exercise. This was especially the case for Art Therapy. Several participants were very enthusiastic about Art and very much appreciated the chance to continue and take additional sessions. Therapeutic Art had a greater capacity for additional people due to the size of the room allocated for that activity. Participants also appreciated how they felt could drop in and out of these sessions at any point. These participants reported that the therapist had been particularly encouraging and flexible.

I did the Emotional Freedom Technique. I did it once … and then I went to art. You’re not supposed to I know. For me, I thought fine try everything but then do what you find helpful. I think because it’s such a wide range of topics it would be impossible for everybody to like everything and in a way I think it’s quite good if you just like a certain area because then other people that like the other area can have more of that.


Well, all the treatments were very, very good … I did Indian Head Massage twice because I found that so helpful.


The acupuncture were great because I even managed to wangle ‘em to get more out of them that suited me. Oh it was good for my back was acupuncture.

[Male, 55, depression, back pain, high blood pressure and cholesterol]

The shiatsu, I’d had shiatsu before and I hadn’t really found it that beneficial and I didn’t again, but I found it pleasurable; it was good.


I had it first time, that was good and then the second time I think there was a choice of art or Alexander Technique. I can’t remember, it was something I didn’t want to do so I was quite happy to do the Alexander again. I think I had two blocks of meditation as well.


Participants reported that the opportunities to take additional one-to-one sessions were understandably not always possible due to the resource implications but as the following participant perceived it, this seemed to balance out between participants. He also expressed a preference for a wider choice of ‘taster’ sessions to explore what would be beneficial and then to have had the opportunity to focus in on specific therapies that were working for them.

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I did most things … I wouldn’t have minded … just carrying on doing one of … the therapies that I liked to do it again, but they liked you to … do sommat else which is, which is alright … but, I’d have liked to have kept up with acupuncture … you just get into it and it finishes, you know, but that’s how it is … But there again, if I hadn’t have gone I wouldn’t have got any of it so … bit balanced. Perhaps if you had all the treatments … if you just had a taster of everything and then decide what you want to … ‘cause they say, they give you a list of things, first day you come, they say, what do you wanna do and I’m looking, what are they, you know, I didn’t know what they was.

[Male, 57, carer, knee pain + swelling, elbow pain, stress]

Several people did mention that they would like to have had the opportunity to focus in on preferred treatments and to have had more than one ‘block’ of an intervention that hey had found beneficial.

Tailoring services to meet need: weekly re-assessments of healthcare priorities

Participants not only appreciated being asked at the outset what their priorities for treatment were, but also valued their one-to-one sessions as an important aspect of choice and tailoring the service to meet their immediate needs on a weekly basis.

They [Indian Head Massage practitioners] did ask me okay, what do you bring this week and it [the treatment] was a response to that … They [acupuncturist] really wanted to know what is your focus for this week, what would you like us to do and they seemed to really adjust according to what I had said…it changed every week and that was the beauty of it you could be flexible … one week I was in quite a bit of pain with irritable bowel syndrome, so what we did that was totally geared towards that was very different from other weeks.


I just know that I wouldn’t want to have missed any of the therapies because even like acupuncture which I hadn’t had before was a wonderful experience. The therapists make it a nice experience for you and you feel as if they really care about you and they listen to whatever you’re presenting with … towards the end I had to have an operation for a prolapse on my bowel so it gave me some strategies of coping with that. And then this time when I had, when I was diagnosed with IBS I’ve been getting bloated stomachs, the acupuncturist was working with that and another time when I pulled a muscle she was working with that. So yes for physical symptoms it was helping.


The massage, again was very good … You could just say, “Oh, my back’s sore or I’ve been having cramps in my leg” and they would just focus on one area for you whatever you wanted, it wasn’t just “I’m going to give you a back massage” it was very collaborative, “Where would you like to be massaged today?”


Similar comments were made about other therapeutic interventions but most related to acupuncture. Many participants highly rated the thoroughness and attention to medical detail that the acupuncturists paid. Touchstone is now considering introducing this process more consistently across the different therapies. This aspect of tailoring treatments to meet participants’ needs in the ‘here and now’ is discussed further in Section 5 of the report.

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Factors limiting choice

Participants reported a range of factors that limited their choice of some interventions/exercises, these included:

late enrolment and booking for subsequent ‘blocks’ of treatments

participant’s condition and type of intervention/exercise

perceived/actual risks associated with treatment/condition

scepticism regarding mechanism of effect and efficacy

timing and availability of information about the Programme

Late enrolment and booking for subsequent ‘blocks’ of treatments

A number of participants were late in enrolling on the Programme and experienced a greater restriction in choice than people who had been able to attend the first assessment/introductory day because they had been fully booked out, often due to the popularity of certain therapies and group activities.

Actually I was late, and by the time I got there all the classes were gone so I got what was left, Indian Head Massage.


There was a lot of things that’d gone because I’d missed the first week so a lot of things had been taken up … I had a little bit of choice … but not a lot … I would’ve loved to have done that [Indian Head Massage] but it was booked out.


You did have a choice but she said ‘oh that’s full’, you know what I mean ... So I didn’t have a full choice, or, ‘would you mind picking something else ‘cause that’s full’.


I’ve gone in three or four weeks late and…I had to get what were there basically … ‘Oh that in’t available at the moment, next time’, because you got another chance ... So I’d just had to take what I had, what were on offer.


On the last day of each treatment ‘block’ participants had to decide on their preferences for the following 5/6 weeks. Some of those who booked their sessions later on in the day found that their choices were limited:

It depends on what’s available and what time of the day they get you for ... to choose the next block, you know, and what’s left over … I think the only thing I didn’t have was the shiatsu … because I think it was just the way the Programme ran and how they could fit people in … I would like to have tried that, but I’m happy with the ones that I got to try.


It was popular, every time I came to do the next block it was full.


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However, there were very few cases where overall people missed out on things that they really wanted to try. Most often participants had the opportunity to take up options at a later stage in the Programme.

And the choice, really, lots of choice. When you sit down with one of the people to choose what you’d like to do first off, you’re told that you can choose a type of exercise, a group activity and an individual therapy for your first block, which I think lasts about five weeks, I think, and then it will change. So if you don’t get to do what you want to do straightaway, when you come to your next block it’ll be okay. And as I was coming in partway through, a lot of things had been taken that I was keen to do, but I knew I would eventually get to do them because, you know, there was lots of time in which to do it. So, initially, I was very impressed really.


I was aware that we did 24 weeks and there were four blocks of six weeks so whatever I had chosen I could have only ever done four of the individual therapies anyway. So I think, some of these are obviously the individual ones. I would have liked to have tried the EFT, but there just wasn’t space in the Programme and you knew you’d have to miss some of the things.


The latter quotesexemplifythe overall sense from participants that they felt they did have a variety of choices and acknowledged and accepted that they were not able to try everything they might have liked to due to the nature of the PCP and funding restraints. There was an acute awareness of how the PCP ran on restricted and time-limited funding.

Limitations relating to health and type of intervention/exercise

Some participants were restricted in their choice of group exercise sessions due to physical restrictions relating to their medical condition which precluded their participation in certain treatments and group activities. Mostly these comments related to activities that involved people having to lie down on the floor e.g. Shiatsu and Alexander Technique.

I suppose it would’ve been nicer to have tried other things like shiatsu … but it’d have to be on a bed rather than on the floor. I think for maybe elderly people or people with walking sticks they wouldn’t be able to access it really … I damaged my cartilage I had to have an operation on my knee last … So, no. I didn’t try that because it was on the floor. If it had been higher up then I would’ve done.


I didn’t do the Dru [yoga], exercise for me … I know that it aggravates my back … so it’s completely out.


I prefer, I think the acupuncture because I was on a table, I was high up. [Female, 41, carer, agoraphobia, stress and anxiety]

I didn’t like the Alexander Technique no. Because you’d to lay on the floor and because I can’t kneel or crouch and you’d to lay down on the floor and you’d to get up and lay on all fours. It was totally impossible for me to kneel on all fours to get up.


However, participants reported a high degree offlexibility in most exercise classes to accommodate participants with limited mobility or capacity to stand for any length of time. It seems through the feedback gathered by Touchstone on the PCP informed changes to some

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of the exercise classes but traditionally Shiatsu does not involve chairs or treatment couches and requires participants to lay down on the floor.

I thought the tutor was very good. There were a lot of people there with different needs. People with walking sticks, there might’ve been someone in a wheelchair, young people, old people. You could sit down and do it if you wanted, you could stand up and do it if you wanted. So it was everybody. So you just did what you could.


My experience was all of the exercisey type classes, tai chi, yoga, was excellent. It was planned so that people of all abilities could take part whether you were in a wheelchair, whether you were sitting in a chair, whether you wanted to stand up or had to lie on the floor because you were in such… you know, you were in discomfort. You could take something from most of the activities and adapt it to how you wanted to do it. So it was, I thought, very good.


The following participant found difficulty with some of the hands-on therapies. Due to her background she had felt uncomfortable with having hands-on treatment by a male practitioner even though she qualified her treatment as being gentle and provided in a safe (screened off) environment. As an alternative she had selected healing and in the following appreciated the tact shown describing how it enabled her to engage and benefit from the treatment.

Yeah, they don’t... either they can put hands-on or not, they ask you … I don’t like it if they touch … especially not the back and I told them that so they worked well… I’d feel light and energetic afterwards. Yeah, just light and my personal ... like all my troubles kind of like, you know, dissolved ... I think it lasted about half a week or something. It just kept ... yeah, it just kept me going I think … It was different but the effects were more or less the same. You know, it made me calm. Yeah, it made me calm in myself and not as anxious. I don’t know really though, it just made me feel better, positive.


Like many participants with issues relating to self-confidence, self-esteem and problems with engaging in social activities her choices were limited by their capacity to engage in group sessions.

I’d definitely have gone to that. If my anxiety hadn’t been to that level then there’s loads of things I’d have done. But I wasn’t in a good place. Looking back I don’t know if I shouldn’t really have cancelled it and gone on it in the future ... but on the other hand it’s still moved me on in doing that.

For this participant, and others facing similar difficulties with group situations, the staff were very flexible in tailoring the Programme to include only one-to-one therapies.

Perceived risks associated with treatment

Some participants reported that they had medical conditions which precluded them from receiving more invasive, physical techniques. In some cases this was due to prior experience of interventions that had exacerbated symptoms. The following participant with fibromyalgia decided not to choose acupuncture because she associated a previous treatment with nerve damage in one of her lower limbs.

I was actually paying for acupuncture a couple of years ago and it was working in the sense that I got to know my body and I could tell that the needle going in there was actually working on my

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sciatic nerve and going down. And it’s probably totally unrelated but I actually started with nerve damage in my feet rather than my hands … I’m not sure whether acupuncture had anything to do with nerve damage. Not in the sense of causing it but kicking of a weakness, but I did feel superstitious enough to say no.


I don’t like massage. My body doesn’t like massage rather. I get more of the paralysis and the weak legs and stuff when I have a massage.


In some cases participants chose not to try acupuncture due to a perceived/or actual risk. These comments should be seen in light of the evidence base on acupuncture safety which includes a number of large-scale studies that indicate very low risk factors:

Acupuncture … affects my kidneys. I’m not allowed to do it because I had kidney failure, I’ve only got one and half kidneys so it’s not recommended that I do acupuncture by my GP and the specialist at the hospital. When I was eighteen I had a car accident which left me paralysed for two years and has left me with ankle and wrist problems. Then I had acupuncture and I ended up with kidney failure. Three sessions of acupuncture and they think that’s what’s caused my kidney failure.


Scepticism regarding mechanism of effect and efficacy

Two participants stated that they did not select acupuncture as they did not understand the mechanism of action or believe that it could possibly have any effect.

I don’t believe in acupuncture … because I’ve never had it so I can’t, I wouldn’t, I just don’t, you see thing with me I’ve had cellulitis in me knees and I don’t want cellulitis again, so where you could get that is through those them needles, you know what I mean, needles for me, there for injections… contaminating your blood system with anything is a no-no, you know, tattoos or, I know I’ve had that myself … but no … if you’ve had cellulitis like I’ve had it in my knees and what not I’m nearly near to death, I mean I were close as close to death as you could be with cellulitis in my knees so acupuncture’s not the thing for it.

I didn’t think sticking needles in wouldn’t do no help … I just didn’t fancy it … ‘cause I just think, I don’t know, I might have missed out on summat, on a miracle cure like, you know what I mean, but I doubt it, I think it’s all up here, a lot of it’s up here [i.e. in the mind].


I didn’t fancy acupuncture at all with it being needles … I just can’t see how, again this is just me personally, I can’t see how sticking needles in your feet can do something to your body up here.


The following participant selected more hands-on treatments as he found them beneficial in relation to alleviating muscle tension and pain relating to his anxiety and depression and the after effects of a Road Traffic Accident. He had prioritised these over other interventions but mentioned that at the time he felt in too much of a vulnerable state to feel comfortable to engage with healing as he did not understand how it worked.

I think that’s partly it, you can’t see it and is working inside your mind and I don’t really know if it’s my anxiety levels around that time and even now, I just thought well you know what I’m not too comfortable with that and I don’t know what, how and what the end result’s gonna be, but I just take the therapies that I feel comfortable with so, yes…as far as I know the other people fed back

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positivity ... they found healing really good, they thought it helped ‘em, but I just felt that it wasn’t something for me at that particular time.

[Male, 43, anxiety and depression, RTA neck injury]I didn’t like Alexander Technique … I never understood it, I just thought what is this? [However] ... It is good I must tell you because when I wake up and feel pain I do that honestly it is good. I mustn’t be unfair. I do them. I do the way that you lie down and relax before you sleep at night. That works as well honestly it works.


Timing, nature and availability of information about the Programme

There were variations in the timing of when participants got a booklet explaining the PCP and this seemed to be related to new materials being developed and made available over time. Most participants had started the PCP with limited prior knowledge of exactly what the Programme involved.

Some participants received an information booklet after the initial session and therefore it was too late to inform their choices. The following participant suggested that having the information booklet at least one week in advance, and/or being able to access information via the website would have given him more of an idea of what the therapies entailed and made it easier to understand how the Programme worked.

There was no way I could sit in that environment and read and plough through that. I think I needed time to actually consider those and if there was a booklet it could have been, it could have been with me at least a week before for me to take on board and try to prioritise.


He also thought that signposting to credible sources of information about each of the different therapies, their potential benefits and risks would have enabled him to make even more of an informed choice. These comments were also reflected by other participants.

Some of the literature that came with it, I didn’t understand it ... the language it was written in … it was written for people that had knowledge of that treatment. For somebody who has no idea about what it means, I think it needed writing in plainer English … when I looked at it I thought well, I don’t know what that’s going to give me.


The following participant felt he did not receive enough information to inform his expectations.He had thought he was attending a type of pain management Programme where the focus would be on symptomatic relief.

When we had the first little interview when they came and said what are you into and all the rest of it they ... I didn’t know anything that they were really throwing at me. i.e., what do you want to do first and then what do you want to do in the second bit and the third bit and the fourth bit because they didn’t give us really enough information about what they were offering … just like a three or four line explanation of each treatment. So what it didn’t do is say, right what can it offer

you. So I was really I was really blind… I thought if it had been me I’d have to have said, right, in the initial interview what... what do you want to come to us for? This is what we offer, what do you think we can offer you? … and then you can make an informed decision about right, this is what I want out of it. So if you’re going for a physical thing which I think mine originates from, then they can deal with that and then deal with the mental side. … I believed it was going to be … a pain control programme so when I ... my perception was right, they’re going to help me

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control my pain or show me techniques that can help me with the pain. I wasn’t expecting things about the mental side, about all that.

[Male, 39, RTA, nerve compression, sciatica, depression]However, Touchstone had developed the information given to participants in response to this feedback and has increased the amount of content available on the website, including pod-casts of previous attendees. The following quote, however, highlights how difficult it would be to fully prepare individuals for the Programme given the depth and breadth of content.

I think if they’ve never done anything like this before you wouldn’t know anything about it anyway. I think if you’re already into this types of thing then you’d already know but I think to sit and explain to someone who didn’t know anything about this it’d have taken all day.


Participants reported a degree of variability in the quality and amount of advice and information given by individual practitioners, in both the one-to-one and group therapeutic sessions. The following quotes exemplify how information (or lack of it) shapes opinions.

I did the Alexander Technique which was weird. It’s as if they’re trying to teach you that your posture’s not good enough and your breathing’s not good enough … [but] ... No questions a silly question. Like Dru yoga or tai chi if you didn’t understand it … some healers don’t tell you anything or give you advice but others are just full of it…


The importance of having explanations of the process of care with regard to perceived impact on outcomes and factors was clearly important in gaining trust in the practitioner’s capabilities. The following quote reinforces the value placed by the participant of being fully informed by the acupuncturist about their treatment and having opportunities to address any specific concerns or health issues. She contrasts this with her experiences of Shiatsu, where hardly any discussion took place, and which ultimately did not instil her with the same level of confidence as acupuncture.

You give them your medical knowledge first … and then they knew their subjects. …But the shiatsu, very relaxing but I was not too sure as to what that was doing really. I found it very enjoyable … and I think that was me questioning it again, yeah. I find it fairly hard … I found the acupuncture I was quite prepared to believe that they knew what they were doing with the needles and I felt that was positive, I think it would have been helpful,… with the shiatsu - you went in, you laid down, you got no talking, you’d just to give yourself up to it and as I say you got no feedback as to what you were supposed to feel really and you never knew what questions to ask about it.


Dignity and Respect

The staff and the volunteers provided what participants described as a welcoming and supportive environment where they felt respected for ‘who they were’ and ‘where they were at’. Participants’ accounts of the care process were scattered with many comments about feeling ‘accepted’on the PCP and how the staff provided a ‘safe’ environment for vulnerable participants’ who were experiencing high levels of anxiety and depression.

A welcoming, personable environment

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Participants were generally very positive about their interactions with the whole team and emphasised the friendly, personable approach from the outset.

Fantastic welcome. Very friendly and egalitarian really … I think it’s helped by [the co-ordinator] and the people who help you to begin with … I actually spoke to [the coordinator] quite a lot on email and when I turned up to the first one…I think [the coordinator] was the first person I met and she was like ‘oh, hello’ as if we knew each other … [she] … was lovely, she was really, really nice. She did my initial assessment and she popped her head round occasionally. She’d say hi, I find it amazing that they know who you are the second week that you’re there sort of thing. It’s always the case that we were on the same wave length.


They were really supportive and friendly. All the staff were. (the coordinator), she knew my circumstances so she was really, really supportive … All the staff that I did come across I couldn’t fault. They were very welcoming and kind, they made you feel welcome when you went.


I thought they were very, very helpful. I found the whole experience very cathartic. Just the atmosphere of the place, as soon as you turned up, the fact that the staff went to the effort of baking a cake each week gave it that very personal, caring touch. The fact that it didn’t matter where you sat people would either leave you in peace if you were reading something or come and sit with you. It didn’t feel cliquey in any way. The fact that you picked your own personal programme rather than “you’re in group A and for a week you’ll do this and then you’ll do that.” Because it was personal you swapped and changed so you got to know everybody which I think helped not create a cliquey atmosphere.


Feeling welcomed and respected from the outset was often mentioned by participants.

With the time limit, not rushed, but treating you with respect and courtesy, you know, seeing to your needs, like having all the teas and coffees, the different kinds there, having books for sale, having… Just from the very beginning of going into the first session, that people are there with a smile saying, “How do you do, how are you?” and welcoming you and so it was a treat really to go not like, you know, going to a hospital and, you know, getting in the line and waiting for your appointment and that each of the therapists were so positive in what they did and treated you with just respect, which I think is a big thing.


Respect and acceptance of participants as individuals

Participants also commented on how they had felt a genuine sense of respect and acceptance of who they were as individuals and where they were at in terms of their health status. This was particularly important for participants who were experiencing quite severe anxiety or depression when they joined the PCP, some of these more vulnerable participants lacked confidence in themselves as well as others. For some the sense of being in a ‘safe, non-judgemental, environment’ was an important component that facilitated their continued participation in the Programme.

I think the Positive Care Programme is very much sort of the respect for people and the acceptance of people where they are … I think it’s very respectful. I think that’s the ethos. Everybody involved, I can’t honestly say I got on with everybody’s personalities but … it was obvious they were there because they thought they had something to offer and they were offering it in a really genuine manner.

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That’s it with the Positive Care Programme you’re not judged, everybody’s there for one specific reason and that is to get a better health or a better meaning of health, or to get something out of it that’s going to be different to them. Now to me my biggest problem was that I didn’t want to be judged. I wanted an environment where I wasn’t sitting in a corner. I did the Journey and thought oh god it’s a group … and I thought I’d just sit in a corner and listen but I didn’t, I really got into it.


Well everybody’s so lovely. Every person I met there is so friendly and non-judgemental. They’re angels the people who are there, especially (the coordinator), the head of the group. It feels more secure. You know it feels like everybody is like you and everybody thinks the same and you share something together. So it is safe. It is you see different people you know it’s like you aren’t judging them or being judged. I never thought even for a minute they were judging me. I never thought that of any of them. They’re so lovely.


These elements are revisited later in the report with regards to enablers and mechanisms in Section 5.

Perceptions of Positive Care: Not a sickness service

Many participants commented on the sense of ‘positive care’ they had received on the Programme and often compared and contrasted it withNHS care.

I think the setting for a start off is different because you’re not in a hospital or you’re not … it doesn’t give you that feeling that there’s something wrong with you.


They’ve got a different ethos to the whole way of treating people and they would be trained to do that and to see that people’s needs are individual … they need uplifting, they don’t need this constant thing of being told, “You’ve got this illness, so there’s nothing we can do”.


These comparisons emphasised perceptions of ‘genuine’ care delivered by ‘dedicated’ therapists ‘who believe in what they do’.

I’d say I think you could go up and talk to them confidentially. I think they’re as good as your GP. There were things … they knew what I was talking about especially in acupuncture and reflexology. I found it wasn’t something that they just went out and learned, it’s something that they’ve dedicated themselves to and they know what they’re talking about. I think I felt more safe in their hands than I have just in St James’ Hospital where you’ve got nurses that want to be nurses that have no compassion or people skills whatsoever. So to me yes they’re fantastic.


But because I’ve been interested in complementary therapy since retirement, I’ve never come across someone working in complementary therapy who isn’t a kind, empathic, caring person. A lot of them are quite eccentric but I love that, they really believe in what they do.

[Female, 57, bereavement, stress, IBS]

From these and other participants comments, it was apparent that the ‘added factor’ was more than just extra time spent on them, but the care and compassion with which services were

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delivered as compared with usual care experiences, mostly GP appointments and hospital visits.

And there’sa lot of love on the Programme, you feel very loved and looked after and cared for. You feel wanted, you know, and I think for people who maybe spend a lot of time on their own during the week, like myself, who can maybe feel a bit socially isolated, it’s good to … And my experience of, say, NHS care is that yes you occasionally meet people who are very dedicated and caring and warm, but you kind of feel pushed through and on a railroad with it. Whereas with the Positive Care Programme it doesn’t feel that way, it feels very relaxed and it’s a very happy place to be.And H, who is coordinating it, is just so warm and bubbly and happy, you know, and just a joy to be around when I was on the course and to work alongside with now as a volunteer; it’s just great. And that’s how the PCP buildings feel. They feel well, you know, they are happy places, you know


It was a lot friendlier … more welcoming … it’s still professional, it was organized and done properly.


Many participants commented on the positivity on the Programme generated by all staff and in particular the co-ordinator.

.

Organisation and infrastructure

There was a general sense from participants that they were very satisfied with the way that the Programme managed and were particularly impressed by the staff responsible for running the Programme.

I think it was very good, very well run. I thought it was very professional. If I emailed [the co-ordinator] she emailed back, easy to get hold of her.


Initially, on first going, I found it really good. Everybody was very warm and friendly and put you at your ease. It was very well organised, the initial thing, there’s so many signs up so there was no way you could get lost within the building, which are all the things that, kind of, get you anxious when you are about to start something new. So all those fears were allayed quite quickly which makes you think, ‘Oh, it’s well organised’ which it is.


Some of the areas where participants experienced difficulties were related tothe initial enrolment process and understanding the structure of the way the Programme worked. Those people who managed to attend the initial session were better prepared than others who joined the Programme part-way in.

What I liked about it was that… when you came along before the Programme you were interviewed and a timetable with help. You were help to choose your options and helped to plan for the time you were going to be attending. All the paperwork was done before you were attending so you were clear about what you were going to be doing before you came here and what you were going to try anyway. And you chose that from the information given.


As described elsewhere in this report, participants could choose from a range of interventions from 3 distinct groups: Individual one-to-one therapeutic interventions, group therapeutic exercise classes and educational group workshops in blocks of 6 weeks. Quite a number of

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people, for various reasons, had joined the Programme one or two weeks after it had already started and as a result, the assessment had been quite brief and choices limited as some of the sessions were already fully booked.

At the first assessment and the start of every 5/6 week block, each person was given a copy of their timetable of chosen activities and this was incorporated into their folders.

It was just a record of your health condition briefly and … what therapies you were doing and where, what your timetable was, so you know, for your first workshop or therapy and then your second one and so on and when the breaks would be … at a glance you could see where about you are at a certain time, yeah and I think it was very helpful really.


A few participants had difficulties in working out where they should be at any one time but it seems that improvements were made in subsequent Programmes which had more volunteers to help out and additional information on timetables and room location in the central area.

… and I wasn’t sure where to go or whatever, it were a bit, the organisation it were all in place but instead of turning up and saying right Mr X go to physiotherapy there, or, you know your physio in that room and then you just sat about sort of looking at each other, it were a bit daunting really, especially with the amount of people that were there, you see.


There was a few volunteers there, people working there and if you’re stuck you just ask one of the volunteers and they actually take you to the room if you didn’t know where it was, you know, but it wasn’t very difficult to find the rooms they were all on one floor.


[The co-ordinator] was fantastic, managing everything, making sure everything ran smoothly, but under (the co-ordinator) there was other volunteers and they were helping as well … and making sure everything ran smoothly, so yeah, definitely, the management of it was fantastic, and like I said if somebody came late there was always somebody at the PCP reception and even the main reception to direct you, to give you your folder and to say well, look you know, you should be in that room.


One participant had been so overwhelmed by the first day that he had not been able to take everything in and as a result ended up missing a workshop that didn’t run throughout the whole Programme.

I was given a huge number of forms to fill in, GP, previous medical conditions, allergies, everything, it was so overwhelming. I didn’t understand the way the rotations worked because I was so overloaded that first week and clearly by the time my next rotation came I still hadn’t been fully appraised of how it worked. So, frustratingly actually missed one of those workshop things you could go to. I was intrigued by it, and they said oh no, that’s been and gone, we’ve done that twice and I actually wasn’t aware that that’s how the system worked … maybe having something that’s colour coded to help people understand could be useful … in the blue week, the blue block means you can only do the finding your own voice or whatever, now we’re on the green block, you know, just something as simple as that could be helpful … and for me it took me ages before I realised how the system worked and hopefully I’m a reasonably intelligent person, and I could not work out.


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This participant felt completely overwhelmed by the first registration day in part because of the amount of information and form filling but also because of the nature of the particular building that the Programme was being held at.

The actual first day which was just to go and register or enrolled, or whatever they called it, was a nightmare, because it was one big room with far too many people and it was horrific for me personally. They knew that and I told them that that was what I was like and they said they would change it and try to stagger people’s arrival time more and things like that.

One participant who, had great difficulties with being in large groups, struggled to spend any time in the central area and even found that having to go in the room to drop off her folder at the end of the day was a struggle. She would have preferred to have been able to return them in some other, more discrete way.

All the venues had a central reception area where participants could access various written materials and CDs, have refreshments and interact with staff, volunteers and other participants. This area was available to everyone in between sessions or for those who decided not to go to, or continue with any particular session. Most people were appreciative of having this space to relax and interact with other participants.

There was plenty of room for us to sit down and just chat to people when you came, but there was always refreshments available and you could bring your lunch if you got there early, or if you were waiting for the course then you could just sit down and there was literature available. So, yes, it was excellent.


Drinks and healthy snacks (and the odd home-baked cake) were provided free of charge and participants could donate if they wished. A few participants commented on the focus on ‘healthy’ options and whilst acknowledging that the idea of the Programme was to incorporate a healthy lifestyle, they would have liked a wider choice.

I know it’s all about wellbeing but I think I was doing enough about my wellbeing and I would’ve liked a de-caff tea or coffee. Even just a cup of tea or coffee, caffeine free, cause I drink that at home anyway.


Whilst one participant had commented on the benefits of the notes in saving time at the beginning of each session, another commented that she would have found it helpful if her social anxiety problems had been highlighted in the notes as this would have informed each practitioner or workshop leader of her difficulties without having to either explain herself or deal with perceived responses to her behaviour. This person did qualify this by saying how impressed overall she had been with the way that staff tried to accommodate her needs.

Participants appreciated the relaxed and informal nature of the Programme and in particular the fact that they were free to come and go from group sessions.

I was just thinking constantly should I sit here or should I excuse myself. You know ‘til eventually somebody else would get up and go and I’d follow them … there was a communal area to sit there. It was so nice and they didn’t mind… you could find somebody to talk to.


if you’re late … coming into a group very accommodating and you could just excuse, you know, whatever and I’m sorry, you can just join in a group, it wasn’t that it’s got to start at a certain time and yeah, ideally they wanted you to start at a certain time and for it to finish but some people

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sometimes came in a bit ... some people there with like crutches had to come in and obviously can appreciate they’d be slow at walking from their bus stops …and some people coming in from quite far away but yeah they were all very accommodating at the course and you could join in part way through as well.


The latter quote reflects the attitudes of other participants who appreciated that people sometimes arrived late as they took more than one bus or lived outside of the Leeds area and possibly needed additional time to get to the site due to mobility problems. One participant appreciated being able to turn up to a session late without criticism after needing to take a bit of time out following a therapeutic session where she had ended up in tears.

One participant, with a military background, commented that he would have preferred the Programme to be more strict about people turning up to group session on time, however he also acknowledged the importance of being able to take responsibility for themselves. This participant possibly missed the first introductory session but his comments reinforce the need to have this type of introduction to make people aware of the potential benefits of the PCP.

A different method might have been better for me… why didn’t they sit us all down in a classroom to start with ... instead of sitting you down in a classroom at the start of it, you’re sort of made to come in an taste the biscuits… and have a coffee and all that. Now, because I’m military trained I’d have done, ‘get in here’, that’s the type of attitude I’m used to … to have such a relaxed atmosphere was good for me probably, I don’t know … it were just nice to be not told to do summat and if you’re gonna do it you’re gonna do it, it’s for my benefit, nobody else’s, you know what I mean.


Participants had opportunities to feed back on the sessions they attended on a regular basis, however one person explained that, as his feedback was sought at the beginning of the next block sessions and there had been a long break (Christmas), he could not remember and thought that it would have been better to give feedback at the end of each block.

Design of the Programme (duration and timings)

Many participants appreciated the fact that the Programme ran for over 20 weeks as it allowed sufficient time to give them an introduction to different therapies, exercises and ideas. However, some people thought that they would not have benefited if it had been run over fewer weeks because they needed time to practise and embody the tools they were learning on the course.

I think it’s a Programme for life to be honest with you, because once you come off you forget so much that, and we have to repeat, it’s the repetition that works. That’s why when it was coming to an end I thought what’s going to happen I’m going to go back. I don’t know how they chose the length of time … but being there was the main thing so being there the more the better, the more repetition the better obviously.


I think for me personally because I find it hard to shut down to my pain … I ‘m not sick, but sometimes I find things quite hard to grasp as well… I think if things lasted more than eight week it’d give me more chance to focus on. ‘Cause like I say out of that eight week if I just miss two weeks, that two weeks is vital.


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The Alexander Technique, initially I did remember but it’s kind of forgotten a little bit, it’s quite precise it’s very conscious of what you’ve got to do, your posture and all that. I can see the benefits of it but I found it hard to discipline myself.


As already mentioned in the section on ‘choice’ quite a number of participants said they would have preferred to have more ‘taster’ sessions to enable them to then focus in and spend more time on their preferred activities. This was most often commented on with regard to the one-on-one therapeutic sessions and in relation to their sustained impact and benefits.

Have a little taster of each and then say oh yeah I like that, but they you’ve got to, it’ll be difficult to work in, say I wanted to do acupuncture there might be 20 people want to do acupuncture so it might be awkward to do but, you don’t really know what you’re signing up for, if you know what I mean, like the reflexology, I didn’t know what it was, but, I liked it, you know, when I did it, I liked it.


They introduce all the complementary therapies, if they can allow people consultations something like for a longer period that might be better…I would have preferred to concentrate on fewer, but for longer period … five weeks are not are enough for … for each thing. [in such a] short time I did not believe it did anything… that’s the thing.


Some of the participant comments support recent Touchstone proposals to re-design the PCP Programme to include a longer-term follow up. Future Programmes are expected to run for fewer weeks (10) with monthly ‘masterclass’ follow-up sessions which aim to ‘embed the learning and continue empowering people to be able to live positively with their condition’. In part this is in response to participant feedback over the five PCPs funded by the Big Lottery Fund balanced against funding considerations and parity with other self-management programmes.

I wished it would have gone on and I could have done some more, but you can’t cover all the things in the one year. I think some of us felt we would have… Yes, I would like to meet up maybe at certain times.


I think in terms of probably most health provisions, it’s more normal to have something that’s quite short and intense and then perhaps some follow-up afterwards and I think that would probably work well for a lot of people. But I think there are people who would probably need the longer block who are probably not functioning as well, who need that extra inertia for a longer period to get them to a higher functioning, if you like, so that they then can move on. So for probably people who are already at a high level of functioning and who just maybe need a bit of intense help and then follow-up, that would probably work quite well. So almost you need two courses running, you know, for the different client groups. So you are catering more to different needs because obviously one shoe doesn’t fit all and I think the shorter course is a good idea maybe for people like myself, but for people who may be less able then they need probably a bit longer.


The end... the end thing is you’re released ... you’re left on your own. What there doesn’t seem to be at the end is, right, come back, come back, come back. And I think that … there should be some way of, right, where are you now? Because... but you’re not... Unless you’re going to get more treatment from them there’s no point having the follow up because they’ve already give you all the information they can and then like I said it’s up to you to use that information and take it whichever direction you want to … They gave you that in the last session, like a closure session … information about where you can go to for this, to that, whatever … but, there wasn’t like say

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six months down the line how do you feel now? ... have you gone out and sourced what you needed? If you can are they at a reasonable price, if not right, do we now have to find somebody who we can get a grant for to subsidise them for you to come to them. You pay half, the grant pays half, and you’re still getting treatment. And that’s your next stage of development for those that could ... So in doing things like in three or four years’ time you might have an initial interview which might take two sessions, i.e. come and sign up, what do you want to do? Here’s all the information ... I’ll go away, come back next week. Right, we’ll now design your programme. Week three you actually start it. You get to the end, you have your end session about where you can go locally. Come back in six months’ time and then give your feedback that way. So you’ve

got ... a beginning, a treatment, and an end and what you can offer.


His comments about contributing towards future PCP follow up sessions reflect those of several participants. Many lamented the end of the Programme and, for some, the routine of attending regular weekly sessions had been an important factor after years of being socially isolated. The following participant did not manage to attend the final session, her comments reinforce the importance of the final session in terms of having an opportunity to reflect and discuss future self-sustaining activities:

I was really sad. I was really sad, even though I knew that I was going away, sort of, me leaving the group rather than… You know, but I had intended to come back and it just didn’t happen like that … I missed that bit. I got the details sent, but then it didn’t really mean anything because I couldn’t, I’d not talked it through with someone, you know, and said… like I’m doing with you now, ‘This bit helped me, but that didn’t’. So I need to be looking at that bit.


Some participants also wanted to continue for a longer period so as to fully take on board all the learning that would facilitate them to embed the skills they needed to better self-manage.

Yes probably that’s what is needed. Follow ups. Like a choice, if you wanted a follow up. Even just a day where you go back and… like when we had the last day, the whole of the groups were in room and we just went over certain bits and… all the I can’t remember what you’d call it. All the people on the Programmes and the teachers were all in one room and they just had like little bits, like maybe a minute where someone would show you a little bit about meditation and then someone would speak about positive thinking for a minute. It was just… that’s all I did that day. Maybe something like that … Cause it’s only once a week and there’s so many therapies, you know to get through them. I think you could go for ages and they’d keep teaching you more and more. They weren’t running out of things to teach you, there was still loads more to learn.


The following participant had suffered with severe bouts of depression over many years and had exhausted NHS options for psychological support. His sense was that he would have been able to make more progression if he had been able to take the course again.

The idea was to help you to help yourself, I think that were the thing behind it to help you move on and to try and help yourself to give your more independence, more self-confidence but I don’t think it really worked because I’ve never had that and going to one of them for 6 months wasn’t ever going to give that back to me… I needed to keep doing it … ‘cos you can talk to them as well and I really can’t put my finger on what snapped when. Gone missing, I know I’m not right, some days I’m still in a daze and just don’t want to be here and don’t want to come out of house sometimes and if I do usually just to go to pub which is round the corner. And I’ve started drinking more to sort of like compensate for. … and I think if I would have gone on it again if there were a second term … I think it’s probably what I needed and maybe then I would have come out myself more, it would have helped me more cos it was just part one if you like, like it was just an

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instalment. Yeah I looked forward to going, it was the only thing I looked forward to in week. I probably would have done [some volunteering] … and I think I would have done if it had gone on longer, it were too short for me … pretty gutted When I got back home week after and I want going anywhere and it was just back to where I were, well it wasn’t far off. Back in my own shell

again.[Male, 55, depression, back pain, high blood pressure + cholesterol]

This participant’s comments are reflected in the quote below regarding the need for longer-term input for those with many years of dealing with chronic conditions to enable them to achieve change.

So for probably people who are already at a high level of functioning and who just maybe need a bit of intense help and then follow-up, that would probably work quite well. So almost you need two courses running, you know, for the different client groups. So you are catering more to different needs because obviously one shoe doesn’t fit all and I think the shorter course is a good idea maybe for people like myself, but for people who may be less able then they need probably a bit longer … I don’t think they’ll get the full benefit of it. Some of it like Positive Thinking they’re just getting started telling you what it’s about, and it’s finished anyway. Like Alexander Technique, it takes like four weeks you do just to learn how to lay in a correct position. I know she did a little bit of walking but she never even covered really. But also it’s a long time especially if people work or whatever. It’s a long time.

[Male, 46, fibromdfyalgia, depression, hypermobility, pain, fatigue]

Times of day the Programme ran

Few participants had difficulties with the time of day that the Programme ran. One person with high anxiety levels found it hard to focus on the last session of the day, which ended at 3pm. She was worried that she would be late home to meet her children after school and thought that a slightly earlier start would have been more ideal for her. Another had turned down the offer of switching to another Programme being held at an alternative (more conducive) venue but had to turn this down as it clashed with their childcare responsibilities. It was apparent through many participants comments that if they were struggling to engage for whatever reason, there was sufficient flexibility within the Programme to accommodate this by adjusting the length of sessions or having the opportunity to ‘take time out’ in the central meeting area.

I think I did, but that has to be balanced against the fact that to do a 3 hour morning, and travel was a major, major thing anyway to do, and just that length of time being out and being involved and having to think and do and follow something is actually a huge depletion of energy anyway but very much worth it … I think it’s a good block of time and had I really struggled they could have reduced the sessions for me, I know they would have been flexible to do that.


Most people managed to participate fully within the three hours sessions, although some thought less content in that time would be of benefit. The participant in the following quote felt that they would have enjoyed the Programme more had the number of sessions had been reduced to 2 as they felt there were too many activities packed into a 3 hour block.

I just think put less into the day, I think that’s what I would have said. I said we seemed to be going from one group session to a relaxation and then to another group and it seemed to be a lot in the day for me, maybe ‘cause I tire more easily, I think if you just maybe had it broken down into every two sessions and a break in middle I think I would have enjoyed the day a bit better …

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I think if you’d have just been able to just do two I think it would have been better, like a healing one and then a group one and maybe just had a bit longer on them two things instead of it being condensed shorter and then going onto something else.


The latter comment was linked to a discussion about the desire for longer ‘hands-on’ therapeutic sessions.

Duration of the therapeutic workshops and sessions

Quite a number of participants said that they would have preferred longer sessions for the therapeutic sessions such as acupuncture, massage and healing and some group sessions which lasted only half an hour.

First one [group session] usually was about ¾ of an hour and I thought that was just about right and then the…if you went for acupuncture or reflexology or something … it were half an hour and I think that could’ve been a bit longer, perhaps ¾ of an hour ... would have been ideal … the therapy sessions were perhaps rushed but there again it were only a taster so I’m not complaining.


Two people commented on the shorter 30 minute Alexander Technique classes in particular, however it seems these were lengthened to 45 minutes in the subsequent Programme.

Half an hour didn’t seem enough. So I put down on my feedback form that the Alexander Technique should be 45 minutes to an hour. And now she’s got 45 minutes and she’s loving it. When we had it was like half an hour.


I think I did 3 of that, it was quite complex were that one, so I felt that was quite a bigger subject, it wasn’t easy to take all in, in such a short sessions you were doing really.


Generally the sense from participants was that they preferred the therapeutic sessions to last between three quarters of an hour to an hour in duration.

Access and appropriateness of the premises used to run the Programme

Participants’ comments on the Beeston site were overall very positive apart from finding it a bit of a challenge to find their way around initially. The Programme ran from several different rooms all on the ground floor with good access for participants with mobility problems. Participants found the reception staff helpful, and that the facilities were very good.

I think they have chosen very carefully where they have the PCP and they are lovely buildings. They feel nice to be in, they’re light, airy, modern, smart, they’re not run down, they’re not dowdy, they are just a nice place to be, they’re places to go to each week. They are not grim and I think that helps. It’s the environment and the people that they’ve chosen to deliver the PCP are so good.


As the building is quite large and sprawling, PCP had sign posted all the rooms and there were volunteers available to show people where the sessions were. Participants did still however

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manage to get lost. As the building was also used for other events and meetings sometimes the rooms were swapped round, and one person described how they’d accidentally walked in on a different meeting.

It would be nice if it were just that room…you know where you were going, sometimes you’re wasting your time looking for t’other room. I mean they were there all there to help you but sometimes you’d been, say in acupuncture and you’re on your own there and you go, oh I’m at so and so next so and I went through and it’s not there and you could see people wandering round … But that were just teething problems I think, nothing major.


One participant suggested that a white board with room details would have been helpful, but this seems to have been put in place as another person commented on one being present in the central area. The following quote sums up generally how participants found the Beeston site.

Fantastic, great receptionist, initially when you walk in and then obviously they’ve got the PCP, I know sometimes the room needed to change but it wasn’t that far, I mean it was either the rooms straight alongside from the main reception area or it was a room next door, so it wasn’t far or hard to find ... toilets were all on the ground floor.. and they had a disabled toilet as well, the gents and

the ladies all within the sort of the main corridor, again very easy.


The overall feedback on Burley Lodge was that it was not an ideal location and Touchstone no longer runs the Positive Care Programme from there. Participant comments highlighted the importance of having premises suitable for this sort of Programme, i.e. having sufficient space and number of quiet rooms. At the Burley Lodge Centre some of the therapies were delivered in a screened-off area in the main reception room, which was quite noisy and affected people’s ability to fully relax in their treatments. One person with ME found the building very difficult to cope with and this had influenced their choice of therapy. He was offered the option to switch to another Programme being run from another site but as it ran in the afternoon he was not able to take up the offer as he had childcare responsibilities.

So for me personally that was not the ideal venue at all. I couldn’t cope with it on several occasions and it actually influenced my choice of therapies that I went for because I thought I just don’t know if I can hack, it I don’t know if I could do it. I’m afraid the noise perception to me is any bit of noise it gets louder and louder and louder … but I would have loved to have been transported somewhere else to have clicked my fingers and be somewhere else and not actually in that place.


It was ... one of the rooms in the community centre and he’d just boarded it off with some... barriers and you’re on the floor on a rug, and that was it. But there were people mingling in and out and talking so it wasn’t quiet ... if anybody were doing it in his clinical room then it would have been a lot quieter atmosphere. You might have some music in the background, be silent and all the rest of it and you’d be more relaxed. So if the venue was better maybe it could be... it could be more beneficial. But once again that’s down to finances, etc.


Having appropriate and accessible premises from which to run the PCP was clearly an important aspect of the perceived quality of care for participants. However, without the resources to provide a dedicated centre for these activities the new premises at Beeston and Headinglyare ‘fit for purpose’.

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Location (accessibility)

Quite a number of participants drove to the sites where the PCP ran whereas others used public transport.

The venue was excellent. The parking was wonderful, it was accessible for me by car. Yes, I could have got there by bus as well, yes, I did, yes.


As quite a number lived outside of Leeds they had reasonably long journey times and some people living on the opposite side of town had to take more than bus. Whilst this wasn’t an issue for most, some people had struggled to use public transport during the bad winter weather, especially when they had limited mobility.

I had a fall just before Christmas with my legs so I didn’t make it. Even though I’ve got two crutches I wasn’t very mobile. And the weather to be honest … I think a lot of people couldn’t commute because of the weather. If you haven’t got transport. I could’ve gone to Headingley on 91 bus but how it fell I had to catch two buses to get there … I found the only thing commuting was a bit hard, quite hard for me, especially on a bad day. If I was in a lot of pain the pain overrode the thought of going to have acupuncture unfortunately.

It’d be better if they had a bus or some sort of transport that could pick you up and take you home especially for people that haven’t got transport … If I’d have had transport that’d have been an improvement to me.


Two people with anxiety problems found public transport to the venue a real challenge.

The first thing it did for me was get me out of the house … it was hard for me because I had to go by bus but I just didn’t miss these sessions.


For the first three weeks Louise met me off the bus to make sure I was alright because even travelling to where I was going was a big step ... going from here to there was a humongous step for me.


As highlighted in previous sections, Touchstone staff were accommodating in terms of offering a place on another PCP running at an alternative venue if accessibility by public transport was a problem. This was reflected in the earlier quote from a participant with ME who was struggling to cope with the small Burley Lodge site given the number of people and activities taking place.

Other factors influencing experience of the Positive Care Programme

As outlined in the introduction to this report, each weekly PCP session was comprised of 3 different types of interventions. Participants’ dialogue on preferences, and elements of the Programme they particularly valued, was focused primarily on their experiences of one-to-one interventions. This was followed by therapeutic group exercise interventions and lastly the educational group sessions. A number of factors influenced these preferences.

Preferences for one-to-one therapeutic interventions over group activities47


Participant preferences for individual therapeutic interventions and the factors influencing those choices were discussed earlier in Section 3of the report. A significant contributing factor was participants’ reported anxieties around group situations which they primarily linked to their health condition and feelings of low self-esteem and lack of self-confidence. The following quote is one such participant, who also struggled to attend one-to-one therapeutic sessions but who nevertheless persevered, with the aid of encouragement and flexibility provided by PCP staff in addressing her concerns and tailoring options to her needs.

All the one to ones I enjoyed.Probably I would’ve coped better, if it’d been a smaller group and also people are there for all different reasons aren’t they. Loads of people there have got maybe physical or are carers for other people, but not have any confidence issues ... But because mine’s anxiety and depression and low self-esteem, social phobia it’s more difficult, but I wanted to try. Once I was in the room, when I got to the therapy I was a lot better but it was like. Yes, it got easier, but I did find it hard.


The following participant also expressed reservations about group workshops which were, however, found to be reinforced through his experience.

I’m not a group person I must admit … I can’t ... on a one on one I can talk all day long, but if it was another maybe one or two people in the room I’d get conscious of it ... If it’s personal stuff then I get conscious, but doing this and you’re trying to... because there was a lot of, how can I put it? Because a lot of people broke down. A lot of people were crying and got upset and emotional and I couldn’t cope, I really couldn’t. I only did the first one because I found the experience of being in a group too much for me and that’s why I didn’t go into another one.


This account contrasts with the following participant’s recollections of group workshops. They had been looking forward more to experiencing the one-to-one therapies and had similar concerns to the person quoted above. However, as a health professional, they were impressed with the way the groups were structured and how they concentrated on more positive approaches and took participants focus away from thinking and talking at length about their illnesses.

I thought it was very good. The group work, some of the classes, some of the educational type, you know, being friends with your body, the diet planning and nutrition, was excellent. It was very well thought out …I was, kind of, more looking forward to the therapies than the group work; I’m not such a fan of group work because I find … individuals can take over and it can get bogged down in minutiae and more about just one person than the whole group. So I was a bit worried about that.

And the way they structured the groups, really it was very good. They were all geared in such a way that it was more people were contributing, but everybody was encouraged to contribute rather than one person dominating and they were structured in a way that it wasn’t really focusing on your illness as such. So that it wasn’t people going on for half an hour about how they felt that day and, you know, everybody falling asleep and not really being that helpful to other people.


Tailoring treatments to suit individual needs was a strong feature of the Programme. The following participant had a very difficult childhood in which he had been excluded and bullied by his peers and thus participating in group activities was a struggle. Here he describes how he was accommodated in his personal preference to receive more acupuncture, after being encouraged to try group work first.

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I wasn’tvery good at the interacting things, they kept trying to get me to try and be more group orientated, I don’t do groups, I’m not very good at groups, I don’t like groups much. I didn’t want to talk to people, I didn’t sort of want to share and play silly games and they wasn’t really silly games, I know that … The acupuncture were great because I even managed to wangle ‘em to get more out of them that suited me.


To be honest with you I wasn’t that keen on the workshops really, I preferred the more one to one … And I think the workshops were probably not really in the area that I like or believe could help. I think the only one that I did like that was in a big group was the yoga.


This latter comment reflects a couple of other participants’ experiences with regard to being able to let their emotions out. A couple of the male participants in particular found emotional displays, either from other people or themselves, somewhat uncomfortable.

Lack of privacy in group therapeutic sessions

The following participant, who was a carer accompanying his wife, commented on his difficulties of being in group situations generally. His wife had benefited greatly from one-to-one sessions of Emotional Freedom Technique, whereas he had experienced it in a group context. Below he describes his initial feelings of embarrassment and how he managed to overcome this somewhat. Ideally he would have by far preferred to have one-to-one sessions as his wife had.

I think it were alright … I felt a bit daft to be honest, you know we’re all sat there tapping each other, you know and that..


My only thing was that sometimes there wasn’t enough privacy, but that didn’t bother me too much because I’m not a very shy person, but I think for some people it might have bothered them, you know. It’s like, for example, when you’re having… I had Indian head massage, which was great, but at the same time as you’re having that there was somebody else having something and then there was like a healing session going on all in the same room.


The above quotes reflect the discomfort some participants experience with disclosing their emotions in public.

I didn’t choose Emotional Freedom technique group thing because I knew I wouldn’t like that. I didn’t know. But I just imagined that people would start to tell… being emotionally free. Talking about that no.


A few participants mentioned how a lack of privacy had negatively impacted on their experiences in some of the group therapeutic sessions. The following participant relayed his experience of another participant who was receiving healing in the same room and disclosing too much for his liking.

She was sort of making her thoughts, talking out a bit too loud, you know what I mean? … she was saying, I’m fed up of this, I’m fed up of that and all this … and I’m going, ‘oh I can do without listening to all this’.


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Alongside comments on the lack of privacy, there was recognition that this was largely due to a lack of financial resources:

It was in the actual community ... one of the rooms in the community centre and he’d just boarded it off with some... some barriers and you’re on the floor on a rug, and that was it. But there were people mingling in and out and talking so it wasn’t quiet. in his clinical room ... it would have been a lot quieter atmosphere. You might have some music in the background, be silent and all the rest of it and you’d be more relaxed. So if the venue was better maybe it could be ... it could be more beneficial. But once again that’s down to finances, etc., and what you can get so you shouldn’t decry what you’re given for nothing.


Variations in quality of group sessions

The following two sections highlight variations in the level of skills of the staff delivering therapeutic exercise interventions and group educational workshops. To a lesser degree participants described differences between practitioners who were providing a range of one-to-one therapies. PCP is a new Programme which is still developing its team of providers.

Some of teachers were just not like to standard that I should have expect … There were one particular person … he’d got obviously some problem ... he wasn’t clear enough, and he was sort of just going through motions … he had his script and he stuck to it and he wasn’t professional in his way of putting it over.


Overall, participants expressed a high degree of satisfaction with the skills of practitioners and workshop leaders on the course. A small number of concerns were also reported. One participant expressed her dissatisfaction at being presented with conceptual information of seemingly little relevance.

I think there were some people who weren’t particularly very good at what they were doing ... the woman who did the stream of consciousness. She was absolutely lovely but I came out thinking, well in fact one of the people I got friendly with who was so quiet,…wouldn’t say boo to a goose, at one point she went ‘you keep telling us that you’re going to tell us how to do this and then you keep saying you’re going to tell us next week, couldn’t you tell us now’. And we just thought it was all airy fairy and you know we were all going round and there were all these ideas but we never got hold of them. Just with that particular person. That said she was lovely but it just didn’t work as a group thing.


The same participant described her experience of an effective group encounter, in which the tutor took account of the level of understanding in the group and conveyed information accordingly.

The absolutely best at putting forward was a chap who came in ... he did a one off and he was from … a counselling sort of Samaritan type thing which is a lousy description. He came in, took everybody at the level they were at, coped with all the comments and things, and he gave information [that was] easily accessible, you could tell he was used to talking to groups … when you stood back from it I thought wow. I was just so impressed with the way his personality came through, his delivery came through … it’d have been great for more sessions because he was just so spot on.


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Some participants recognised differences between their individual perceptions and those of the wider group.

There was one about ‘being in the now’ and the tutor didn’t put a plan together which I get because she wanted to be in the now, which I get. She was trying to do a talk on in the now while being in the now. I got the concept but it reminded me too much of self-help books for me and they’re not something I’ve ever used so it just felt a little bit too much like that for my personal taste. I think it was just the way that that came across, that session. It came across very self-help book, I can’t think of another way to describe it… A lot of people took it on board and really liked it. I don’t know whether it was something I already knew about and I just felt ‘move on’. I just, I’ve never read a self-help book but … I don’t like them.


Information ‘overload’ (too much chalk and talk)

For one participant who had limited energy levels, the quality of his experience had been affected by being overwhelmed by the amount of information disseminated in the group workshops. He described some of the group therapeutic exercise sessions as too ‘intellectualised’. He referred to Meditation and the Alexander Technique as examples of interventions that he would have both expected and preferred to be more experiential. From his and other people’s reports this was one of the reasons people gave for deciding not to complete their 5/6 week ‘blocks’.

I was fairly mediocre about how good it was. I’ve come across a little bit of meditation before and I was determined to have an open mind … there’s no fixed way … and I actually found the way it was delivered, for me, it was far too intellectualised … I think it was good to have it backed up with certain worksheets and things, but the balance wasn’t really right for me. I think you needed to go straight in and experience something and then go back and unpick it … rather than we’re going to tell you loads of things about it.


The following comments resonate with themes covered earlier in the report in relation to choice and preferences for active involvement and experience over ‘talk and chalk’.

Sometimes you could get boring people talking and talking and talking. But you had like meditation and other ones … you were involved, you didn’t just sit there for forty five minutes. There was one particular one, a lady who did tai-chi, she was a goddess she knew everything about being human being and when she was talking she would get us involved. She would tell us to get up and do that, or do this and sit down. It wasn’t just sitting there and talk, and talk, and talk and like half way through just wander off. So she was the one that I enjoyed the talk, but most of them I did not participate or I left the class. Getting people involved. I think for me because of my medication I get tired and sometimes my brain will just shut off. But it happened, I didn’t want it to happen but after twenty minutes I felt it shut down… If I was interested I’d remember the content, but the ones I wasn’t interested in just went bang, bang, bang, I don’t know because I was sitting there but I wasn’t there. I was just thinking constantly should I sit here or should I excuse myself. You know ‘till eventually somebody else would get up and go and I’d follow them.


I can’t remember what it actually was now. Given a talk through, sort of, nutrition and things like that, but do you know I can’t remember exactly what it… it was something to do with that, but the class was just so boring … it just didn’t stay in there at all … you’d all, sort of, sit in a circle and you’d be talked at about things that were good for you and why they were good for you and things

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that are bad and why they were bad and you’d think … I’m just not good at sitting and just getting instructions.


Overall, participants were most positive about the more experiential aspects of the course, especially the ‘done to’ hands-on treatments. Their ability to remember details about the ‘chalk and talk sessions’ were limited when compared with more vivid recollections of one-to-one and active group sessions such as Therapeutic Art or singing.

I found that if it was somebody talking at you, the ones where you actually had some interaction and something to do I found much better but it could be different ways people learn. The more I do I understand and the better I am at actually doing something. But what is it, an adult will only concentrate for twenty minutes, it’s a very low time. So if you’re over an hour in a lecture and someone’s talking and it’s very, very interesting and that person’s very enthusiastic and she wants to get that enthusiasm over to you, after a while you switch off if you haven’t stood up, moved around or had a little task to do.


Lack of continuity in topic and workshop leader in the educational sessions

Two participants described a lack of continuity in subject matter in the group sessions which they found quite disruptive. One of these also expressed disappointment at not being able to get hold of presentation materials for the following week which was being held by a different workshop leader.

There didn’t seem to be set tutors for set rooms … it seemed to be whoever was available run that class … you went into that room you thought, oh it was going to be that tutor following on with like the singing one and when you went in it was another tutor and she’d changed the subject and you were doing something completely different.


It always changed, so you got to know somebody and then perhaps when this new session starts it was somebody … you knew odd ones, itwas a bit disruptive that wasn’t it … I don’t know, It weren’t that as such … you’ve got to know ‘em for 5 weeks and then they changed. it got a bit muddled,…with all this mind and body thing and … you were doing something different, you could be doing summat different in the 5 week block you’d be doing 3 things … mixing ‘em up a bit.


Occasional unplanned therapist absence is inevitable in a long-running and multi-stranded intervention. Oneparticipant commented on how well they thought this eventuality was handled within the Programme:

I have to say, it’s just occurred to me, we have the six weeks, and the at least one or two, at least two weeks when the therapist wasn’t there but it always really impressed me that they always found somebody else, there was always somebody else with the expertise who could just move things, they’d move their own participants or clients or whatever they are called, around so that nobody missed and that was really good … they were all, because there were staff there who were actually multitalented.


Factors preventing participants’ full attendance on the Programme

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Several participants missed one or two sessions at the beginning of the Programme because they had been signposted or referred after the Programme started. One person had missed four sessions of the first ‘block’.

Apart from the accessibility issues already covered, throughout the Programme participants had missed sessions for a whole range of reasons unrelated to the Programme. One participant missed several sessions due a stay in hospital and subsequent follow-up appointments. Another missed a total of seven weeks due to a fall down a flight of stairs which left her on crutches and unable to travel to the Programme as it entailed two separate bus rides. She missed a further four also due to transport and accessibility issues during a spell of severe winter weather. Obviously there were breaks over public holidays.

The research on sustained attendance on Programmes for people with long-term health problems is well documented. In relation to duration and capacity for people to engage in the Programme consistently every week is notoriously problematic. If the Programme was run on a ‘rolling’ basis, this perhaps would enable participants to drop out at times when their health precludes them from participation and re-join another Programme at a later date. This had occurred in quite a synchronistic way for the participant who was hospitalised and able to join one of the subsequent PCPs.

How participants related to philosophical/spiritual concepts

Participants discussed a range of responses to concepts around spirituality, healing, and ‘energy’ which are common to many of the interventions and workshops included in the Programme (i.e. yoga, healing, massage, shiatsu, acupuncture, tai chi, visualisation etc.).

Some concepts were entirely new or ‘alien’ to a few. An example of this is the following quote which is set in the context of having listened to another participant who was talking at length about how bad their life was during one of the group healing sessions.

I did healing. I found that a bit strange … I can’t say I didn’t like it. It was okay but when I walked out of the room at the end of it I didn’t really feel any different. I suppose it was okay because you just had half an hour sitting in silence. There were about four or five of us in the room with four or five different healers. Sometimes you weren’t even touched. The healers were talking about energy in the room. ‘Did you feel it when you came in?’, ‘as soon as I walk in I feel it’ … And it’s fine but for me personally I don’t really … I can’t see how it works I suppose … I suppose it’s just alien to me. I’m not really used to it. Their thoughts are that they transmit more healing power don’t they, you know what I mean … and I’m sure that if I were talking to me mates in pub about all this and what not they’d say he’s a fruit cake is this lad, wouldn’t they, you know what I mean, you wouldn’t talk about it out of this … I wouldn’t talk about it to, to me mates.


The following participant, however, explained how, throughout the Programme, she had opened herself up to new ideas. The following quote is in the context of discussing how different activities and therapies appealed to different participants and furthermore, how her attitude to healing had changed throughout the course by observing the benefits felt by other ‘significant’ people on the course.

None of its religious like… but just some… You see I never did the healing, one of my friends she had the healing done she was saying how they don’t touch you but you could feel… I was a bit sceptical of that. I was thinking no, I probably will try it though. They do change your way of thinking and introduce new ideas to you.


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One participant described how, as a ‘very down to earth’ person, she had found some of the visualisation exercises used in the healing and Emotional Freedom Technique sessions quite ‘alien’.

I can’t remember what it’s called. It was a workshop, I did something else where you plant your feet on the ground and you do something like lifting your arms up and getting the energy from the sun and pulling it down, surrounding your body with this energy and covered in white light from the sun ... and pushing it into the earth with all your worries … I just knew it wasn’t me. I knew I couldn’t do it, it’s just not the sort of thing I’d do. I’m very down to earth.


Most participants seemed to incorporated many of the techniques without issue such as the participant who continued his meditation practice as part of his Sikh daily worship. Another participant, who was a Quaker, described how the underlying principles of the Programme resonated with her beliefs. The following participant had at points questioned aspects of the PCP in relation to her Christian beliefs but had managed to ultimately incorporate and accept them.

I had issues about being involved with anything to do with these kind of things, so it was quite a big jump for me to try these things because I’m a Christian and it’s, like, against my religion,…yoga, meditation, acupuncture, I suppose they did really [conflict with her beliefs], but I kind of moved into a bit of a different place in my thinking so … I still have a strong belief, but I’ve kind of been able to fit things in somehow.


Another participant highlighted the potential that the PCP had for putting off participants who were unfamiliar with the philosophical approach of the Programme and thus would miss out on the potential benefits that the Programme could deliver.

Just someone to explain to the … people that get up and walk out, you know what I mean,… because I suppose there’s people that turn up and think oh I’m not having none of this I’m off, you know what I mean, they’re the ones that I would like to say, hold on a minute, it’s for your benefit is this, you know, you’re here for yourself not for them and … that’s how I would say it … because I think that most of people that go after first couple of hours, or first session or whatever … they’re just not aware of what good it probably would do for ‘em…


Summary section 3

Participants in our interview sample reported experiences of the Programme that were overwhelmingly positive in terms of the process of care. Participants emphasised the friendly, welcoming atmosphere where they did not feel judged and felt a sense of genuine respect and acceptance of themselves as individuals coping with their particular health problems. Participants also appreciated the opportunity to use the flexible structure of the Programme, in particular the chance to access and try out unfamiliar therapies before making the choices that enabled them to create a care plan suited their personal needs. Some of the difficulties encountered related to participants’ specific needs or related to the limitations that their conditions created.

Suitability of premises emerged as an important theme particularly in relation to the one-to-one therapeutic treatments which are normally delivered in a quiet and relaxing environment. This

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was highlighted by participants’ experiences of Burley Lodge, which is no longer used as a site to deliver the Programme. Despite it being a ‘lovely building’ it did not have sufficient capacity to house the wide range of activities and interventions. Part of the room was screened off to deliver massage and shiatsu treatments etc. however, noise factor from other participants using the same area as a central respite and meeting area, seemed to diminish the full benefit of the treatments for some and in one case actually influenced their choice of treatment.

Another site has now been found in North Leeds and some interviewees reported that they had heard positive feedback from people who they had recommended and had attended a subsequent PCP that ran at this site. The Beeston site was a bit of a labyrinth for participants to navigate. Even though volunteers were at hand to guide people and there was a central whiteboard with a timetable and room numbers, the first day seemed to be a bit of a challenge. However, in terms of accessibility and appropriateness, the Beeston site was very well rated by participants, primarily as it offered greater privacy and space suitable to the range of activities.

A good proportion of participants had driven to the PCP and several lived outside the Leeds area. One person had quite a lengthy journey via train and bus from a neighbouring town. Those people who were reliant on public transport and living some distance away had some issues with bus connections, especially in the winter months. Participants with ME or mobility issues found the journey to the site particularly arduous.One person with severe mobility problems said that having transport to and from the site would have enabled her to attend more sessions and thought this would have been the case for many other participants who had debilitating long term-health conditions.

In terms of the structure and content of the Programme, feedback from our interviewees suggests that a shift in emphasis to more experiential sessions would be welcomed, and might result in a reduced drop-out rate from the Programme.

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4. Exploring the perceived value and benefits of PCP participation

In the following section we look at the range of outcomes and perceived benefits reported by PCP participants who had attended a minimum of 50% of the weekly sessions so as to capture participants’ experiences of the Programme. On average the sample of participants who were interviewed attended on average 16/20 and 17/24 sessions. The following benefits are based on the perceptions of those participants and are thus not representative of all participants who enrolled on the Programme. This type of qualitative research, whilst not able to ‘prove’ any effect or enable any conclusions to be drawn in terms of ‘efficacy’, is able to identify the range of perceived benefits of those participants who were interviewed.

Participants in our sample described improvements in their physical and psychological/ emotional health, as well as their ability to engage in society and the workplace. This section looks at each of these aspects in turn. In section 5, we examine some of the possible mechanisms involved in achieving the reported benefits and the degree to which those benefits were being sustained one month (recent completers) and one year after the Programme ended (sustainability group).

Valuing the opportunity to join the PCP

The overall impression from participants is that they had very much valued the opportunity to take part in a unique Programme and felt fortunate to have been able to attend the PCP.

Well everything’s useful … there were a few things I’m working at, so I needed this Programme. I’m so lucky it was there.


Any Programme that supplies alternative medicines and alternative therapies is so invaluable and because of my experiences with hospitals and so on and generally with GPs, who can’t supply anything like that.


I really enjoyed it. I thought they were very, very helpful. I found the whole experience very cathartic.


Many participants commented not only on the benefits of the Programme to themselves, but also how it could help other people with LTCs.

I think it’s an excellent Programme, you know, I really think it’s a great help to the individuals there.


It is a life changing experience really. I don’t think you can put your finger on it. I think if it was pain or something like that it’d be easier to define. But it is such a powerful thing I mean the fact that I’ve got two friends who are on it now, presumably because I was enthusiastic enough, and they were appreciative. I took stuff to my GP and said told him he ought to know about it. I took a load of leaflets and said I’d give them to people I knew.


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Perceived impact on physical symptoms

Although the main goal of the PCP is to help participants develop self-care/management skills, the majority of participants reported symptomatic relief for a range of physical symptoms. These benefits were reported to be immediate and primarily attributed to the ‘hands-on’ one-to-one therapeutic interventions (i.e. acupuncture, Indian head massage, massage, reflexology and shiatsu).

In section 2, participants were conceptualised within four main groups, participants with:

1. Psychological problems 2. ‘Hard to treat’ conditions (fibromyalgia, ME) 3. Physical problems with acknowledged stress and anxiety related symptoms 4. Painful and debilitating conditions with limited acknowledgement of psychological impact

Physical pain and discomfort were common themes amongst all four groups of participants, irrespective of their primary presenting condition. Participants reported a range of physical benefits which fell broadly into the following four categories:

Reduced musculoskeletal pain and stiffness Increased energy and vitality Gastric and urinary tract symptom alleviation A greater sense of relaxation (physically and emotionally) Less severe relapses and faster recovery

For the majority of interviewed participants symptomatic relief was immediate and lasted up to one or two days following treatment. The following quote describes the immediate relief experienced from acupuncture for both neck pain and gastrointestinal problems.

With the neck, I definitely felt it was the acupuncture that was dealing with that. I explained where the pain was, as soon as she pressed on she could find that spot and deal with it … unbelievable … as soon as she put that needle in, you felt a relief, It seemed to help… with the neck, definitely, instant relief with that…and like this, with the digestive [problems], she says well we’ll try the needles there and instantly, when she put the needles in I felt, because I do have a lot of pain there, I felt some relief when she was doing it.


Participants presenting with psychological issues often had secondary physical symptoms, such as IBS, muscle tension or pain from previous accidents or injuries, the following quotes are examples of how these secondary symptoms were alleviated for two individuals in this group.

Reflexology I had that as well and then again, you know, that was really, really, good, that worked well like massage helped, like Indian head massage helped ... physical and sort of mental and emotional as well really, I think, I think those therapies worked because, you know, it was like half an hour for the reflexology but I did feel that shifted a lot of my sort of stress and anxiety symptoms, you know, definitely, so all those therapies I think helped


That was quite good [the] pain in my back that’s gone … also because I do about 5, 6 miles every morning … walking in the park, so that’s also helped my back along with the massage.


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The person in the latter quote also reported immediate relief from neck and head tension which resolved his sleep problems on the evenings of his treatments, enabling him to have a good night’s rest. This reflected several other participants’ experiences of improved sleep patterns.

Indian head massage, brilliant. I’ve never had that before and I found it very beneficial. I found it really allowed me to relax and de-stressing and really improve my sleep. I slept very well after Indian head massage.


One of the carers in the group reported reduced pain and inflammation of the knee following reflexology and that this had been sustained up to a year after the Programme had ended. He also commented that his elbow pain had completely disappeared but was unsure as to what this could be attributed to. His comment reflects other participants’ acknowledgement of how these types of interventions helped with the psychological components of dealing with pain.

Oh I had some bother in my elbow didn’t I, and they did that, that helped, well it’s gone now so I feel … there again it might, I don’t know whether it’s that or whether it would have gone anyway but it seemed to help. I felt it were helping so, that’s half of battle in’t it. I did acupuncture which I thought were great, although I could have done that, I found that helpful … [with] the bad knee … it seemed to help that.


it takes your thinking off you, like now, it’s taking all thoughts about me right away and that’s half the … half of battle if you’re sat thinking about it.


Participants commonly reported that they had started the PCP with very low energy and a lack of vitality. Some participants had noticed perceptible shifts in their energy levels, again particularly following acupuncture treatment.

I liked the acupuncture because it was different and I got a burst of energy afterwards. You know, it took me over ... It made me really calm and, yeah, it worked. I felt better in myself. Not as anxious and just energised.


Another participant who had a range of symptoms associated with ME reported several temporary effects such as relaxation, and relief from headaches and Irritable Bowel Syndrome. Other participants with ‘hard to treat’ conditions also reported benefits from the range of hands-on treatments. The following participant, with fibromyalgia describes how the Indian head massage practitioner accommodated her condition:

I get a lot of pain on the back of my neck and [the Indian Head Massage practitioner] was really good at doing the basic thing and then anything that needed concentrating on. She’s quite good at coping with me if she hit a fibromyalgia point. It was just a wonderful experience. I wanted the full experience of the shoulders, the face, the head the lot. I found that invigorating. I do get sinus problems and that helped … it [still] comes and goes … but it was really helpful.


A number of participants also described increased energy and vitality on the day of treatment and up to one or two days following, however, some participants reported more long-lasting benefits.

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I loved the Indian Head Massage … It just makes you feel brighter and more upbeat, you can’t wait for’ week after.


Other perceived benefits that were reported include: reduced symptoms relating to IBS, reduced incidences of sudden onset paralysis, and improved continence.

A significant proportion of participants commented on how they had found the more ‘hands-on’ therapeutic sessions beneficial in alleviating physical symptoms that they associated with stress and anxiety. Several participants reported relief from musculoskeletal pain and discomfort generated through built up tension and anxiety, particularly in the upper body areas (head, neck and shoulders). Participants frequently talked about feeling ‘relaxed’ and ‘calm’ as well as gaining temporary relief from muscle tension and bodily discomfort that they associated with anxiety and stress.

Healing, I found that very good. Some of the healers were … I think it’s the sense of calmness and wellbeing that they just give off and I always felt very centred and grounded when I came out of those sessions. That was very good. Indian head massage, brilliant. I’ve never had that before and I found it very beneficial. I found it really allowed me to relax and distressing and really improve my sleep; I slept very well after Indian head massage.


Oh it [Shiatsu] was really relaxing. I felt like I was walking on air it was lovely it was really really nice and calming and everything.


[massage] … relaxation particularly and just relief from physical tension that actually results from being in physical pain if I’m tense, it’s a big knock on effect and it’s a big knock on effect because my symptoms are delayed. [Reflexology] … was surprisingly calming …and it was ok, it was good, I was pleased it wasn’t a wasted choice by any means.


I found head massage quite relaxing … and we were doing different things, for example I managed reflexology for half an hour, I felt very relaxed but I had a good day, remember after that it’s same thing yes, that’s the thing with them.


It helped with my shoulders. [name of massage therapist] says I have a lot of knots in my shoulders … I think it’s the stress from doing everything, dashing around.


If I’d had a paralysis attack, you know, I’d say to them and then they’ll say which area would I like them to work on. You know, say, you know, legs or arms and ... I felt better in myself. Not as anxious and just energised. It [healing] was different but the effects were more or less the same. You know, it made me calm. Yeah, it made me calm in myself and not as anxious. I don’t know really though, it just made me feel better, positive.


I think it all helped and I’ve got blood pressure as well, so they said that would help, I don’t know whether it did or not, but you feel as though it’s doing ... [the healing] … it were nice, just well, I used to come home, fall asleep … I know I fall asleep anyway but … it must have relaxed me because I used to, I just fell asleep…I try and breathe, breathing and just sitting quiet and stuff, don’t I, trouble is if I sit, I relax, I fall asleep, yeah too relaxed! … I used to relax with yoga.


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The following participant also reported feeling relaxed after the healing sessions but also noticed an improvement to his knee problem.

I found it good, found it helpful … Well, I’ve got a bad knee basically and it calmed it down and everything and she, it just seem to feel as tho it were helping, I haven’t had as much pain from it as I did have, so whether that’s, whether that’s all in me head I don’t know…


Many participants commented on the fact that the sessions were just ‘tasters’ and felt that greater benefits may have been achieved with more sessions over a longer period of time, creating a build-up effect. Similarly, the following participant explained how interruptions to treatment ‘blocks’ during the Programme influenced the perceived accumulative effects.

I wouldn’t ever say a lot but to be fair sometimes the, just the way the weeks went, it might be that there was a two week break for Christmas, or you get half term in, so you didn’t have an accumulative effect and that was nobody’s fault it’s just the way the weeks went. So you lost your continuity of coming back a week later and a week later and a week later.


Participants feedback related predominantly to the short-term benefits of the manual therapies which provided temporary relief on the day of treatment and lasting up to one or two days after treatment. As described earlier in this report these sessions were intended to be more of a ‘taster’ and participants felt thatmore treatment sessions were needed to get the full benefit.

The following participant with complex chronic conditions reported that she had noticed an improvement with regards to a reduction in the number of relapsesand faster recovery from them.

I’m, sort of, doing better than I was, you know, because usually through winter I would have had at least two or three episodes where I would have had to been in bed for two or three weeks at a time … But this last winter just gone, I’ve not had anything like that. I think I’ve had one, maybe two, full days in bed … Because I think I’ve learnt to relax a little bit. I’m still not brilliant at relaxing and turning off and I still get upset about everything and, you know, because I do take everything inside, you know, and it… I wouldn’t say it hurts, but it’s not nice.


What seems to sets this Programme apart from other self-management programmes was the opportunity to explore a range of therapeutic interventions that work on symptomatic relief for both physical and emotional relief.

I think, the fact that it was broken up into 1 to 1 workshops, like for example the Indian head massage, fantastic, you know, or generally the massage. With my stress and anxiety symptoms, I just felt quite relieved of my symptoms, you know, and obviously with working with the therapists, and again with the acupuncture as well, just the therapies I found them very therapeutic… something physical, like the massage, the Indian head massage … definitely those stood out, and ..after having those therapies, definitely some things sort of shifted,… because I get… aches and , because I get stressed in my shoulders and things and I have had an accident as well, or road traffic accident, you know where I’ve had whiplash and I’ve had a sort of … how can I put it pain in my back and neck, you know, and things like that and when you get the Indian head massage and when you get the massage, it just tends to, I found it very soothing.


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Opportunities for participants to try out different interventions that work on physical components of tension and stress sets the PCP apart from more mainstream SMPs such as the Expert Patient Programme.

Perceived improvements in psychological and emotional functioning

In Section 2, we described how a significant proportion of the participants had suffered from extended periods of anxiety and depression prior to entering the Programme. Stress was also a very common theme across the board and often participants with physically debilitating conditions reported negative affective responses to their ill health and the physical limitations that it had imposed on their lives. The psychological and emotional benefits reported by PCP participants were arguably the most frequently cited outcomes, and for many, reductions to symptoms associated with anxiety and stress were perceived to be directly attributable to the Programme.

Yes, I still have my anxiety problems and depression problems but I’m not feeling as bad as I did. I was going through a really bad patch with everything … There’s still stuff going on but a lot of things have calmed down. I feel more better to deal with those things now than I did then. [My husband] … said to me that at least I’ve gone, even though it was difficult to get myself there, but he took me and picked me back up. He thinks it’s helped me a lot.


I think from going in on the Positive Care, I think we’ve both relaxed, I think that’s what we’ve realised … We’ve both relaxed a lotmore because we seek, because we’ve had outside help, that’s the difference with us, we’ve never looked for it before.

A few participants described how they had been able to release emotions that they had been suppressing for over 20 years, and this was particularly noticeable in their experience of the Emotional Freedom Technique (discussed further in Section 5of the report). The following participant describes how in her very first session on the Programme, of Indian head massage, had helped her relax and release years of built-up pressure. Whilst she could not identify whether the release was due to the physical effects or the fact she had been able to cry the result was a sense of relief and a more positive attitude, having entered the Programme feeling very anxious.

It did seem to help me relax …it was lovely was the head massage, but I went into floods of tears and I was a bit embarrassed and I think I’d got myself upset about…’oh well I’m working for positive’, ‘cause as I says I’m always positive about what I can get out of things but I got a bit nervous and I just cried me eyes out and they give me a drink of water and says, that can happen to some people, because it’s a good way and you’re releasing some of your pressure that you’ve built up within yourself, so, I felt better afterwards.. had the Indian head massage done the good or was it the sheer fact that I was there and somebody had given some positive body contact really, that had relaxed some of the tension, but whatever it had done it’d released some pressure within me and then because I’d had that initial cry I think I went into the next class with a more positive attitude.


Participants valued the one-to-one therapeutic sessions and reported how time spent focusing on the body in different ways through therapeutic touch had enabled them to either experience their body differently and/or focus the mind away from their usual daily worries and concerns. This ability to focus the mind via engagement in activity was also evident for participants who had engaged in group sessions such as the Art Therapy workshops. Their descriptions often

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included phrases such as being ‘able to lose’ themselves in the activities. Another aspect of these group activities, for some, was also the companionship of the group and being able to ‘have a good laugh’.

I found it therapeutic. The tutor brought the materials in and showed us what she had done, what you could do. Then you just did your own thing. She was there to help you if you needed help. For me you can talk to the other people there and you can just switch off. When I’m doing art and concentrating on it … So you were just able to lose yourself in the art part.

The art class was very good, I found that very therapeutic,… and enjoyed talking and we had a laugh and I felt that was helpful to me because I’d done a lot of the group sessions over the few weeks, towards the end of the Programme I felt I’d wanted a bit of a light relief.


I did an art group a couple of times and that, I enjoyed that – I didn’t think I would. I didn’t really want to do it, but there was no pressure and it was really just, you know, a bit of paper here and just daub on it, you know, just do what you want on it. I found it really… it took me out of myself, you know, took my mind off things and it’s made me think a lot about joining an art group even though I can’t draw or paint.


A number of participants had counselling through IAPT services connected to Touchstone, either just before, during or after the Programme. They reported that these services had run well alongside each other in terms of helping them deal with psychological issues, build confidence in themselves and move them forward to enable them to take different choices.

I think it’s made me value myself more. Knowing that there’s people that want to help you … and because they want to help you it just makes you feel that you are somebody. So it’s ... you know, it’s given me more self-esteem. Yeah, because I normally do ... if I didn’t do the IAPT and the PCP I wouldn’t be volunteering now, I’d just be in my house and just doing what I normally do.


Going and seeing the psychologist for a while. She was helping me with how I think about myself, because I’ve got a very low self-image and low self-esteem. She was helping me with that. It did help me a lot and so from that I did get a leaflet from there to go to another group for people that need counselling or for people that have got mental health problems. I put my name down that I wanted to go there but I cancelled it because it was a group and I just couldn’t do it. But that was before Positive Care Programme. I’ve got my name down again for it now.


I’d done the Positive Care Programme and I’m now volunteering on it, and I’m going to finish Journey next week, block one, and then there’s another block, a three month block, after that. So I said I was half way through Journey which is in house which is where you get to learn more about your personality disorder and then with Positive Care Programme you get to learn about different things. I said it was like wow. I feel better in myself, I walk taller now …Positive Care Programme has taught me that I’m not a victim anymore. I am a human being who’s got more power than I actually thought I did.


Another theme that emerged from the interviews was the high degree of impact their condition(s) had on their levels of self-esteem and confidence and how their participation on the PCP had helped them to change this. Participants described how gradually they developed a sense of self-worth through the Programme and attributed this to the warmth and support

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provided by the people delivering and volunteering on the project in addition to their experiences of individual components of the project.

I would come home and sort of feedback to my family and, you know, they were supportive and I think they sort of encouraged me going to the Positive Care Programme, because I would report positive feedback. So, yes definitely my family were quite pleased for me that I was going there once a week and I think, I mean I saw my confidence coming back, and I think they saw that as well, I think it reflected in the things and me coming home in a much more positive sort of mood.


I actually really enjoyed them … [the group sessions] … yeah. I don’t know, I sort of went in on my own and it didn’t matter because you can just talk to anybody. So it were marvellous. I suppose it gave me a bit more confidence. So that’s good.


Positive and active engagement in life: improvements in social functioning

At the point of entering the Programme many participants described how they had experienced prolonged phases of disengagement from ‘normal’ activities after their physical and/or mental health had declined. Participants’ ‘positive and active engagement in life’ was reflected in many of their descriptions of the activities they were engaged in once the Programme had ended. This was apparent in both the ‘recent completer’ and ‘sustainability group’ participants, and more so in the latter group which suggests that this engagement is sustained post intervention.

From the person who didn’t want to see anybody, who didn’t want to face the world, I’ve become a person who put their name down for voluntary work because I feel safe. I’m hoping to move out and do some more but I feel safe with this boundary so hopefully start from that point. I’m not seeing people. I’m still not there. Like I said I’m hoping to do some Positive Care Programme again and working as a volunteer. I am just me I still want to be. I want to sort out my things first.


Several participants had continued with some of these activities experienced on the Programme once it had come to an end. This was especially the case for several participants who had taken the Therapeutic Art option where many had gone on to participate in creative and artistic activities. For participants who had entered the Programme with extremely high levels of anxiety and social isolation the course had allowed them to make the first step in simply opening themselves up to the possibility that they could have a less isolated life that they could enjoy and actively engage in.

That Programme has helped me because it’s given me that little bit of confidence to go to the other things and be with people. It’s opened doors and opened doors in my mind because it’ s given me a little taster of doing something different and I liked it ... It’s opened doors in the view of me wanting to do different things and to live a normal life. That’s what I mean about opening doors in my mind. I don’t want to spend the rest of my life isolated and not have any contact with people so it’s just taking baby steps towards that now. I know that I do want that. I miss not having that contact really and I miss not having a normal life … It’s sort of unlocked something really. Because I wasn’t like that before, I wasn’t seeing anyone before at all apart from my family. It has helped me … really nobody knows how much that has helped me … It’s opened up doors that I do want to get back into reality and start living a proper life.


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Positive Care Programme’s helped me gain more confidence to go out that front door to face basically what I have to do every day rather than staying in bed every day or crying everyday which I have been doing. I’ve got to the stage now where if I have a bad day I don’t stay down, I get up and go…No I’m a better person that what I used to be. I’ve got more confidence now. I mean you said to me eight months ago that I’d be volunteering to do the Positive Care Programme or even going out that front door to do Journey I’d have laughed … and it’s only last year I started dating men again.


The following participants had also been extremely isolated prior to going on the Programme and had noticed a change in the amount of social contactsince attending the PCP.

I don’t limit myself, I don’t stop myself from doing. You know, I see it as a challenge. Where before I’d just stop myself dead and, you know, I’m not going to do it, you know. I think it’s knowing that ... people are nice and people are not out to get you where I thought people were out to get me all the time. My attitude’s changed, you know. There are nice people about. Quite a few nice people about who just want to help you and help you get on.


Yeah, definitely seeing more of my friends, yes. I’m socialising a little bit more. I’m not saying I’m going out every day. I’m not saying that … I’m 100 per cent confident, but I’m much more confident than I was before I started the Positive Care Programme, definitely … and I am seeing friends sometimes, it’s only once every fortnight, but at least it is once a fortnight … we can do meditation at home but also go to the temple more often I think now, … and we do meditation there and I think I’ve got more involved with the temple as well, which is definitely positive … and I get to see people there at the temple and I think that’s quite important, I really do.


So at the moment I’m making more friends, so that’s good … Going online and on Facebook, which is something else that’s actually… that’s helped a lot as well.


Participants also commented on how they felt the Programme had impacted on their family lives. The following person described how she used the techniques to cope better with her children and control her temper.

I am a lot calmer. I’m not you know like before constantly, constantly screaming and shouting. Still sometimes they annoy me but like I said I try to focus on my breathing, count to ten all these techniques and it works. They laminate them and I put them on the fridge and read it all the time. I’m working on it it’s not like it’s finished that’s why I chose to work there, because I think I can help myself and probably be of help to others. It’s like carrying on with it. I took the hand outs home like anger management and I put them in the kitchen for my son, he’s fourteen and told him to have a look at it, how to manage your emotions, your anger. And it’s not working but it’s good that he knows. So … it was good for the whole family I would say.


It’s made me talk to people more on a one to one basis ‘cos I wouldn’t even do that t sometimes… Talk to people like you or this is why I agreed to do this… for years I never talked to my brother in law that much. Things that have happened, their side of the family that we’ve been brought closer so I talk to him more as well … but it still I end up talking about me, my wife said it’s all about you isn’t it, everything about you and I used to argue with her about that, but I think no she’s right it is. …Yes [I am better able to see it] … but I can’t stop doing it though.


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Summary

Interviewed participants reported a wide range of perceived benefits from their participation on the PCP. What particularly distinguishes this SMP from most other mainstream programmes is the access to a broad range of ‘hands-on’ therapeutic one-to-one sessions that had perceived direct therapeutic effect. All participants reported some impact on their physical condition(s) or related symptoms, including those with predominantly psychological issues. Many participants came to the Programme suffering from musculoskeletal pain and discomfort commonly associated with long-term stress and anxiety. For most participants, the physical benefits were experienced on the day of treatment and up to one or two days following. A few participants did report more long-term and permanent physical changes. Participants were acutely aware that the sessions were limited to 5/6 week blocks which they perceived as ‘taster’ sessions rather than a full course of treatment and thus unable to experience a cumulative effect.

Another theme was participants’ experiencing a sense of being ‘calm’ and ‘relaxed’ which was, for some, for the first time in many years. Most of the longer-term benefits reported related to improvements in psychological, emotional and social functioning. A significant theme was increased levels of confidence and self-esteem and the capacity to engage more fully in life. For some, this had been only ‘small steps’ whilst others reported quite significant progress. Participants with quite severe and enduring mental health problems had also engaged with psychological services (most commonly via IAPT), and their perceptions were that they worked well alongside each other. Although none of the participants reported that they had been able to return to work, severalparticipants had already begun or offered to be a volunteer on subsequent PCPs or with other community-based services.

In the following section we now examine some of the mechanisms and factors that participants reported in achieving the perceived benefits. We conclude the report by discussing the degree to which participants sustained these reported outcomes in relation to the core aim of the Programme: i.e. increased self-care and self-management. It is in this latter section where the PCP group exercise and workshops seemed to have a greater role to play.

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5. Exploring the mechanisms of effect

In this section, we explore some of the possible mechanisms that enabled this multi-faceted Programme to deliver the perceived benefits reported in section 4. From the interview transcripts it is apparent that individuals experienced this Programme in a radically different way to their prior healthcare experiences.

The only things I’ve got on the NHS really are anxiety management and counselling … it’s a completely different thing. Like counselling you’re just focussing on yourself but with that Positive Care Programme you’re not just focussing on yourself. You’re focussing on the therapy, whatever you’re doing, you’re focussing on that more.


I think the Positive Care Programme was more therapeutic … With my stress and anxiety symptoms, I just felt quite relieved … of my symptoms, and obviously with working with the therapists, and again with the acupuncture as well, just the therapies I found them very therapeutic, found it, very looking forward to going to … the Positive Care Programme on a Thursday. Where prior to that I didn’t really look forward to much to be honest, you know, I didn’t have much motivation, self-confidence, self- esteem ... and I felt that the first time in months that I actually wanted to go somewhere… this Positive Care Programme, it’s the first one where I’ve been … where it’s to do with sort of health.

You can, as I say, get to try different therapies which you don’t really get referred to an acupuncturist if you’ve got depression ... normally GPs it’s medication, possibly… physiotherapy ... in some cases but it’s quite limited in resources, I mean you don’t get reflexology for example … very rarely. You don’t get massage therapy, you don’t get Indian head massage therapy yet you can get all these therapies in the PCP and you get hand outs.


Entry to the Programme (invitational and exploratory)

Although the number of recommendations to the PCP by healthcare professionals has now reached 50%, one of the important features of this Self-Management Programme (SMP) is that entry into it is entirely based on self-referral. As a result, participants’ responsibility is being engaged at that point - as the individual chooses to join the Programme, thus taking a first step in taking responsibility for their wellbeing and management of their illness. This strategy has also been adopted on the Health Foundation’s ‘Co-creating Health’ improvement programme.2

Word-of-mouth recommendation for the PCP was commented on by many participants, which suggests a potential difference in health behaviours when information is provided by peers. Hearing another person has benefited from the Programme may be a more powerful activator for an individual than health promotion activity or demonstration of research findings by professionals. This highlights the issues around evidence base and ultimately what is construed as evidence by lay consumers (i.e. the patient) and professionals and commissioning bodies. Specifically, consumers’ decision-making around health is more likely to be influenced by stories of success and recovery from a peer and individuals place a high value on hearing from ‘patients like me’ and the web-based programme is a good example of this.8

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A number of the interviewed participants had been introduced to the Programme through personal recommendation and many had signposted the PCP to at least one or two other people who had then gone on to attend one of the Programmes. The impact of this on personal choice around health behaviours should not be underestimated as these new models of health, particularly around LTC and shifting responsibility to the individual, need to balance the expertise of the professionals (and professions – dictated by research evidence derived from RCTs) and the expertise of the participant (gleaned from personal experience and knowledge of the experience of others). This paradigm shift to more co-creative models of health is evident in recent self-management programmes. The Health Foundation programme provides education and training for NHS clinicians and patients alike so as to better integrate self-management support into routine care for people with long-term conditions.

Entry into the Programme was invitational and exploratory and this provides greater opportunities to engage ‘hard to treat’ and ‘hard to reach’ groups. This approach can encourage those who might not otherwise engage in a health care activity (of a more prescribed nature) to come forward and provides new options for those people who have complex health needs that are not being met by the NHS, having explored all options .

I, sort of, felt that I could do other things that I’d maybe not thought about doing before, or I’d thought about them and just, “Well, it’s not going to help that much, so I’ll just leave it” … Like actually doing relaxation, just in for relaxation because you know how to relax, but you just don’t sit down and actively relax really, but I can do that now. So that’s good … I think it were maybe because you’re just literally lying there and someone else is in charge of you, looking after you. So, you know, and they really calm you down and then really talk to you, you know.


It may also encourage particular groups who have been traditionally hard to engage (for example those from Black and Minority Ethnic Groups).

We wentto a yoga class me and my husband and … two Asian ladies come into [it], but because we’d got two men in the class, they only come to that one group and they didn’t come again, and it was a shame because they were ever so nice, but it’s because their background won’t allow them to mix as such … but when I went into this Positive Care Programme there were a couple of Asian ladies there and they … really enjoyed opening up to us and talking to us and they were saying how their backgrounds had been at school and how they’d gone into the neighbourhood and they enjoyed talking to us and we enjoyed talking to them and … I enjoyed talking to them .. and learning the different lives … It’s just I like the diversity of people, I do.


This was also very much the case for one of the carers, who attended with his wife. Despite being aware of a local carers’ group, he had not attended over the many years that he had supported his wife through serious ill health. He attended the PCP when his wife invited him to join her after she had learned that he too could attend in his own right. In part, his attendance was due to the fact that he could attend with his wife, however, from the point he entered the PCP he rarely attended sessions with his wife. They both felt that this had been of benefit as they were able to explore different aspects of the PCP that interested and ‘worked’ for them.

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Co-production: personalisation in ‘the here and now’ versus manualisation

The possibility to self-refer also enables participants to ‘engage’ with the Programme at very different stages, in terms of their capacity to do so. This sets the Programme apart from other interventions such as CBT which requires a certain level of ‘readiness to change’ from the outset. Health behaviour ultimately starts with the mind and attitudes the individual has towards their illness (acceptance/denial for example). The health care system (buy-in to medical model or not, for example), and other personal, interpersonal and societal factors will affect from the very start how people engage (or don’t engage) with what is offered. This understanding is at the heart of addictions work and Prochaska & DiClemente’s model of ‘stages of change’ and is used to underpin the design of other self-management programmes (See Appendix 7).9

The advantage of the PCP is that it can meet the individual where they are at in terms of the ‘stages of change’ model. The participant is not required to be at a certain stage of readiness in order to meet the professional at the place where they are offering something specific for them. This is quite a different experience to what is usually offered, where it is implicit that the ‘patient’ is ready and willing to receive a certain type of help. As the person is being ‘met where they are’ at the point they refer to the Programme, this opens the door for more individuals across the range of the ‘stages of change’ model.

Figure 1: Cyclical process of engagement

On the PCP, individuals were invited and supported in exploring a range of options without any pre-set agenda to ‘move patients on’ and this process was repeated every 5/6 weeks. A common theme mentioned by interviewed participants was the importance of focusing on ‘the here and now’, which helped them to address their immediate needs at each weekly session and enabled them to take on positive health behaviours and this was intrinsic to the therapies and workshops provided on the PCP.

This process of on-going choice and exploration also contributed to participants’ direct involvement and engagement on the Programme. At the first appointment, they are asked what they ‘want to get out’ of the Programme and at each weekly therapeutic session participants are asked what they need at that point in time and their choices enable them to

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InvitationalParticipation

Experiences inform choice

Immediate changes and benefits

Focus on the here and now

+Positive

reinforcement


tailor the Programme to suit their individual needs, and this is an interesting model of co-production.

I think it’s been very good because it’s such a wide range of topics and activities, there’s something for everybody and you can have taster sessions and find out what’s helpful physically and mentally. It’s more tailored for the person rather than the topic if that makes sense. Like say psychotherapy is psychotherapy, this is the way we do it, everybody that comes in does it this way, if it works for you fine if it doesn’t tough. Whereas the Positive Care Programme, there’s so many different things you will find something that you like and something that does help you.


At the beginning of each ‘block’ participants had a choice of what they wanted to experience and these preferences were allowed to emerge and this enabled participants to progress organically at a pace that was appropriate for them. This aspect of the Programme differs from other, manualised, SMPs, which employ more ‘stepping-up’ goal-setting type approaches.

As commonly occurs with SMPs for people with long-term conditions, sustained attendance can be a struggle due to participants’ health status which can fluctuate over time. As reported elsewhere in the report, the staff who were runningthe PCP were extremely helpful and flexible in enabling participants’ continued engagement. One person who needed an operation was able to stop half-way through one Programme and pick up on a subsequent Programme once she had recovered. The following participant was similarly accommodated during a relapse with her ME.

I found the facilitators very helpful, pretty much most of the things that I went on was the range of choices ; the fact that at one point I got very poorly around Christmas time and had to go and stay at my parents, I wasn’t capable of managing on my own. I thought I’d missed the opportunity to go then because of the rule about missing two and the long waiting list. I contacted them and explained, they were totally understanding about it and held my place which was lovely because I’m sick to death of starting things and then the illness kicks in and I have to cancel something. I find that very upsetting and frustrating, it didn’t happen here which was great.


A few participants struggled to engage with the groups at points where they were experiencing high anxiety.

It got a little bit easier sometimes but it did get harder depending on what’s going on with me really. I did go in there and I did sit down in there for a bit on occasions as well. I’d be waiting for [my husband] and go and sit down for a bit. I did speak to the lady who did the meditations after I stopped going, she came over and had a word with me but I found that difficult. I found that really difficult doing that. But if I didn’t have all that anxiety going on it would’ve been better for me to go in and try to mix with people but it was too hard for me to do that.


In this case the participant was accommodated though attending just one-to-one therapeutic sessions including healing. Due to the amount of flexibility on the PCP participants were able to take steps back without having to drop out entirely and tailor what they did according to what they could cope with at any given session. If the Programme were entirely standardised, this would not be possible.

A significant proportion of participants had been socially isolated at the point they entered the Programme either as a result of physical mobility problems or psychological issues, often both.

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As already discussed, participants felt from the outset that staff went out of their way to accommodate any difficulties to ensure continued engagement on the Programme, especially for those participants who experience high anxiety in group situations.

… because obviously initially I was a little anxious, because of the way I felt. I was experiencing quite high anxiety. But when I got there, we got to meet other people and talk to other people, my anxiety sort of actually became less and less as the weeks went on and I actually found it very, very helpful.


Well I just went into... well I just went in and, you know, didn’t say much. Or sometimes I had a lot to say or ... you just felt like you were included. I can’t explain … It just felt really inclusive ... I did have a bad time once, where I didn’t want to say anything and [the practitioner] actually spoke to me … she stayed with me and talked to me and she said it would be okay if I just sat, you know, at the back of the class and listened to the class…. And I realised I can change my mood. I don’t have to be all down and depressed and ... I can effect a change in myself. And by the end of the session I was ... back to normal. [I] Thought,‘right, yeah, I’ll go to the next session now ... I’ll stay’.


One of the group workshops did involve diary-keeping and goal-setting but this was only reported by two participants, both of whom found it helpful. The following participant reported how goal-setting (with the support of his CBT therapy running alongside the Programme) helped him to better self-manage:

Yeah initially I was thinking there … oh you know everything’s gonna end and I think it is gonna come as a bit of a shock to me, but however with the counselling CBT, you know, because in the CBT I did do sort of work schedules to see what my activities and things are going to be on a sort of day to day and a week to week basis, and it didn’t have to be exact just approximate and also with the PCP obviously with the things that we’ve learned ... I managed to sort of you know, learn from there and work from there and you know now every day obviously I set myself small, very small goals and targets ... and I work with them.


Whilst goal-setting, encouragement and follow-up were not explicitly formalised in the Programme, these elements had clearly been a part of the weekly one-to-one sessions in which participants were asked what they wanted to achieve that week and this was encouraged and followed up at each subsequent session. Each person experienced the Programme quite differently and the following sections reflect the range of mechanisms reported in the interviews. In the following section we examine some of the key enablers that emerged in relation to improving self-management and care.

Building the foundations for improved self-care

Participants reported a number of factors that they perceived to support them in developing the foundations for better self-care and management, these included:

1. Positive care: developing self-worth through feeling valued and accepted2. Social contact, support and modelling3. Therapeutic benefits as a stimulus towards change4. Increased self-monitoring, insight and acceptance5. Developing constructive attitudes and approaches (confidence in ability to cope)

1. Positive care: developing self-worth through feeling valued and accepted

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The role of self-compassion as an important mediator of change has been highlighted in the field of Mindfulness Cognitive Behavioural Therapy (MBCT).10 11 12As described in section 3 of this report, participants made many comments about the sense of care and support that they felt whilst on the Programme and the impact that this had on their sense of self-worth, which in turn gave people ‘permission’ to care for themselves.

It just made you evaluate your whole acceptance of the inner person. It almost gave you a license to care for yourself, that’s what I discovered. I think when you come from a background where there’s a lot of being told what to do, when you come to a Programme like this it gives you permission to do, it seems quite liberating. If you go to a doctor or GP or other members of the medical profession what you tend to find is people are always trying to solve problem for you and always trying to make it go away whereas this was more about caring and accepting.


It…made a difference to me, because I suffer from depression it made me realise that, even going there and talking to somebody about my problems and talking it on board, and being able to help me ... But they showed that they cared. [One of the therapists] said she wished she could get rid of my pain for good. You don’t meet people like that every day. You don’t even get it in a hospital. I didn’t get it there. I couldn’t talk to a nurse in the hospital and ask her anything whereas if I’d have been, when I was there, I could ask them all kinds of… I asked them all things about my condition, about chronic pain.


I think it’s made me value myself more. Knowing that there’s people that want to help you just out of ... and because they want to help you it just makes you feel that you are somebody. So it’s... you know, it’s given me more self-esteem ... if I didn’t do the IAPT and the PCP I wouldn’t be volunteering now, I’d just be in my house and just doing what I normally do. I think it’s ... I think it’s actually the best. ..You just feel accepted when you go in, you know. When my GP is just like … a bit cringey, you know. GP, sit down, wait your turn … Whereas PCP we’re just you go in … you do your thing, you sit down ... just chat to anybody … and just not hold yourself, you know, aloof. Which normally I do, like a wallflower. But PCP ... it just brought me out of myself basically.


Comments about the supportive nature of the PCP were contrasted by several participants with a perceived lack of support and care experienced within the NHS.

It feels as if it’s more nurturing than clinical. I suppose by the very fact that when you go to your GP … it’s usually a crisis point. You haven’t particularly chosen to go, you’ve had to go for something physical or mental. And then when you go you’re waiting, they’re running late with their appointments … When you saw a therapist at Positive Care Programme it was an allocated time … it was a one-to-one, you felt as if they were really there for you at that time. So that in itself just felt nurturing.


I don’t know. I just don’t like… maybe it’s the way they talk to you or I suppose you go there and you don’t know if they’re going to stick needles in you and do blood tests and things … but with a therapist they do calm you down, you know, it’s the way they talk to you … while they’re actually doing the therapy. You know, with the reflexology, she’ll talk to you while she’s working on your feet and that, sort of, relaxes you as well … Unless you want to go to sleep or, you know, just sit back and … you’re not too well so you just sit back and let her do whatever she’s doing and that’s fine because then she’ll just sit quiet and, you know … that’s part of it, making someone feel relaxed and because if you can get them to relax that’s half of the problem. And stress isn’t a good thing.


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2. Social contact, support and modelling

The sense of inclusion and acceptance felt by participants was also extended by them to other people attending the Programme.Some participants mentioned their appreciation of being able to interact with people from a wide range of backgrounds. For some this had helped them open up to people that they ordinarily would not normally connect with in their every-day lives.

I’m a bit more tolerant of other people … Some of the people that got really friendly with quite surprised me in the sense of I would never have chosen to become friends with them. It wasn’t particularly that I did lots of courses with them because I didn’t. We did occasional things where we’d meet up. I think I’m much more open to seeing a much greater depth in people that I’ve seen before.


Unlike the majority of SMPs which are tailored towards specific patient groups (e.g. arthritis, chronic pain), this Programme gave participants the opportunity to mix with other people with a range of health conditions.

… because they’re carers and people with ... with conditions, long term health conditions. You know, physical, mental. People were all different.


You work in groups as well, where you can sort of interact with one another if you want to and work in groups and I think just talking to people … you get to learn about other people’s experiences, ... I thought I’d been poorly for a long time but,… I was surprised to find that there’s been people there suffering from other health conditions that have been very, very poorly , house-bound, you know, they’ve not worked for many, many years, you know, and things like that, and so you do get to find out sort of the broader picture.


A number of participants appreciated how severe other people’s problems were in comparison to themselves and that listening to others enabled them to either put things in perspective or take their mind away from their own concerns in the moment.

They were all there with a problem and you listen to the others and you stop thinking about your

own problem … nobody batted an eyelid that I’d been crying and just sit down.


One participant who found it difficult to identify with other participants on the Programme would have preferred to be with more people like him in terms of seeking relief from purely physical symptoms. His impression was that most participants were there for help with mental health problems, however, he had begun to recognise and acknowledge some of the psychological impacts relating to his condition.

If I could meet somebody with my exact problem then I would be able to sort of mix notes … to me most of them were there for depression … there wasn’t many people there with bad backs … there were some with bad shoulder … but not as severe as me … there were no people who were hobbling about like me sometimes ... Well I just thought they were all nutters me … I

thought I’m not here for these, I’m not one of these, but obviously I was … Well it gave me structure to what is going off with my body and what not and learned what has happened to me, but I think it’s more to do with me head ... The psychological rather than the physical.

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The following participant, whilst not being around many other people with chronic debilitating pain, nevertheless felt she had learned from her group experiences and connected well with another participant who had a similar condition.

I think because you’ve got somewhere to go once a week and you’re with other people that are sort of similar to you ... I think because when I was there you’ve got somebody to interact with each week. You knew you could meet somebody and get to know them individually over the weeks that you go … I think when you listen to a lot of people … then obviously you learn from everybody who’s going round [in the group session] and saying what’s wrong with them. A lot of them were to do with ME or chronic pain like me or depression.


An interesting aspect of the PCP was that participants’ experiences of the level of disclosure about their ‘problems’ varied so much. Apart from a couple of comments from male participants who had experiences where they felt uncomfortable at the level of disclosure from other participants in group scenarios, the overall impression was that people felt that they were able to share experiences if they wanted to and not pressurised to do so if they didn’t.

The individual reasons why everyone were coming I didn’t know ‘cos we didn’t really talk, I didn’t talk to people about their reasons …Or I didn’t share mine very well, it was sort of, I’d share it one to one, not group sort of therapy if that makes sense… I’m not very good in groups. We did talk in some points but never I don’t think I ever did really in depth

[Male, 55, depression, back pain, high blood pressure + cholesterol]

I think it was the most wonderful experience I have had in my life, truly remarkable. Everybody was so welcoming and very, very positive despite the fact that they would have their own problems … I think the main thing was that you didn’t know anything about anybody else’s problems. Nobody said anything at all about their illnesses or whatever … I think everybody was very honest about what they were feeling at the time and the leaders were able to cope with if there was any negativity. So you didn’t feel as though, you know, you were going to come out unhappy or upset about it. And if anybody was feeling upset they were just able to go away and just get a cup of tea and then settle themselves and talk to another leader. So that was very different from any other group I’ve been to, where you felt you had to sit there and stay there no matter what … [or] … on the level of anybody discussing there aches and pains and what was wrong with them. It was very different and very uplifting from any other group I’ve been to.


With regard to carers, one participant, who had attended with her daughter who had been diagnosed as having schizoaffective disorder, had her capacity to engage with others limited by the fact that her daughter accompanied her on the course. Eventually, a disagreement around some of the concepts and a perceived clash with her mother’s Christian beliefs actually led her to stop attending the course. In hindsight, she thought it would have been better to have gone on the Programme separately and she wished that she could attend another PCP if possible on her own.

She was coming along and she had one of her sudden change of ideas and she was like, ‘Mum, it’s not right, you shouldn’t be doing this’ ... ’I’m into the Christianity thing now’ … this is what she’s like, a couple of months later she’s going off to these spiritual healing things which are absolute taboo, you know, and then she’s back into … But she’s very convincing when she’s in that phase and I don’t know, I kind of got swept along with her, which I have done sometimes because she’s so believable … and you, sort of, start thinking, “Ah, just a minute”, but you can’t

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really disagree with her because she’s on one and she’s driven … So she was all a bit wobbly and that was another thing, I was sort of keeping an eye on her as well, you know, and she was getting distressed with me going and so it was just easier to stop going, plus I was absolutely

shattered.[Female, 58, ME, carer, stress and depression]

This experience was mirrored in another participant’s recollection of a married couple who attended the PCP and went to every session (other than one-to-one treatments). Their conclusion was that the PCP would have been much more beneficial if they had attended separate group workshops and exercise classes, thus enabling them to socialise more with other participants. This mirrors the comments from the husband carer and his wife who both appreciated the fact that they spent all of their time apart on the course, enabling greater engagement.

It was the actual fact I was going out, I’d a positive reason of going somewhere … I didn’t know what was going to happen when I went, so it was enlightening … meeting new people, which I’ve all’us enjoyed, which I don’t get sat at home and I was getting some of my confidence back … I were enjoying myself because I saw … you was doing something … and we weren’t doing it together. I enjoyed the part that we weren’t doing anything together, we were both doing it separately.


Some participants described how the group gained cohesion over the course of the Programme and how they appreciated everybody’s contribution to their learning and development.

I think for the group, I think we really gelled as a big group. It was fabulous at the end when the main person had iced a cake and everything, it was a really lovely sense that we were a group. ..I came away feeling that I was really glad that everybody was as they were. I almost felt like going to everybody and saying thank you for being there. You felt like saying to everybody thank you for being you because you’d learned so much. I didn’t realise quite how touched I was. It would’ve been completely different if they hadn’t been there.


The participant quoted below describes their sense of empowerment within the group to take more responsibility and have a greater say in co-producing health and wellbeing.

I think through the Programme, listening to other people and feeling that between us we could actually do something better with our lives and that it wasn’t just a case of putting up with the GP issuing these tablets and that there was an alternative. And, yes, the confidence of the group, I think, I would say. Feeling that you weren’t just a number, that you did matter and that you, you know, you had your life to live and you had a right to something better than just tablets.


There was an overall sense from participants that they had appreciated and benefited from being involved in a group Programme, in part relating to the support it provided but also in terms of the opportunities for social modelling and persuasion. Most participants had made a connection with other people on the course, for some this was with just one or two people, but nevertheless it had given them a sense of shared experience with others coping with similar conditions and life issues.

The first thing it did for me was get me out of the house. I hate people, I hated society, it was great in a way because when I was there I didn’t feel like the one odd out.In a way everybody has

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got similar issues so being there, I was feeling safe, and it was hard for me because I had to go by bus but I just didn’t miss these sessions.


I met some nice people in groups. You speak to them about what’s happening with them[Female, 44, long-term depression, RTA, chronic leg pain]

For some participants, their shared experiences with some of the practitioners delivering the workshops and therapeutic interventions were of greater importance to them in terms of social modelling. Having the experience of being around someone they could strongly identify with and who had managed to turn their lives around was a great inspiration and role model for some participants, in particular those who had severe anxiety and depression at the point of entering the Programme.

[One therapist] said to me that years ago she wasn’t well years ago and had a lot of depression and was very down but it was from doing (her particular therapy) that really helped her. She was taking the class ... She was so confident, so happy. I was just stunned ... You absolutely wouldn’t have known she’d had any problems, she was absolutely transformed and it was because she was doing this that gave her a focus.


This particular woman I loved she had exactly the same problems and she managed to come out of it so she was the best teacher … we used to get the bus together and she was constantly teaching me. She would always help another person, she always had energy as well.


The following two participants particularly appreciated spending time around different people than they normally associated with in their everyday lives.

… they’re the people that I need to be around more and more but I’m not I’m round … lots of racist stuff going on, I mean you know it does and I try, I’m not racist but sometimes you know, you don’t know do you ‘cos you listen to these people and you talk about things and it is a form of brainwashing and things go in your head and I know this isn’t right and you can tell yourself but at the end of the day were all people, were all entitled to, like I was saying about kids, to a decent start in life. To a decent life.


Well, all these things … like I said before about me other treatments, they’ll always give you a bit of companionship and what not and all that and it’s all different people and believe it or not it’s nice to be around some educated people rather than when you go out, the local clubs or pubs and what not and they’re all, you know what I mean, they’re all not very, very bright … and probably, they’re more interesting that your normal people.


I actually enjoyed going. I actually enjoyed talking to other people ... because having two kids at home, let’s be fair, you’re watching CBeebies all the time or you’re painting or doing something with the kids, you don’t get the adult conversation. And it was great. And it wasn’t the same people you see if you go out to the pub or you go out with family. It was somebody different. And it was really interesting, I really enjoyed it.


A few participants struggled, however, to connect with the ‘positive’ approaches taken by the group workshop leaders and had difficulty in applying it to their everyday lives.

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I didn’t get the group session stuff. The way that was presented I couldn’t see what benefit it was to me. There were times you think instead of looking at everything on the negative side look at it from the other perspective and see what you can get out of it. And I was looking at it and thinking yeah, great, that’s in an ideal world. But I’ve got two kids at home and I’ve got a life to lead. If I take onboard everything you say I have to live a different life. And I can’t ... I understand what they want to achieve and trying to get across, but how do you make that practical... put that in practice when your home life is just a hundred miles an hour. And I couldn’t... and I’m thinking no, you’ve got to put that to there, and the presenters, you could see that... I thought... well my perception was they didn’t have young kids any more. So their lifestyle was different and they were talking about how they were doing now.


Beyond the specific therapeutic benefits of the treatments (discussed below), participants had opportunities to build therapeutic relationships, and particularly those people with stress, anxiety and depression, valued having the time to develop therapeutic relationships with practitioners.

I think it’s definitely the time element as well, because you get to know the therapists…and over the 5 weeks in any one block … you get to know the therapist and you’re more comfortable.


The therapists. They were fantastic together….and just the advice you get from all the therapists. You know when you get to know them a bit more ... The advice she gave me, nobody had ever given me before and she was just spot on. The [treatment] was nice but the advice she gave me made a real, real difference.


Quite a number of participants made appreciative comments about how informative some practitioners had been with regard to the treatment process, in particular acupuncture and reflexology.

I mean with the acupuncture, she was very good, she was talking to you and explaining what she was doing and what it would do for you, there again she was saying … we know we’ve put the needle in the right place, you know it and like I say with the neck, she knew instantly.


The following participant appreciated the advice and support he got in dealing with financial problems, not only in being proactive about dealing with his debts but also in providing him with an alternative perspective in his response to his stress in relation to it:

I just think they talk so positive about it, you know, I said oh well, you know, just… relax and I felt, and from a financial point of view ... I haven’t got it, don’t worry about it, so it’s pay it back as a pound a month or whatever and … that’s all I do so I relax about it.


3. Therapeutic benefits as a stimulus to change

Although the main aim of the PCP was to help participants develop self-management and self-care skills, the majority of participants reported positive changes in their ability to self-care that stemmed from improvement in their physical symptoms relating to stress and anxiety.

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I felt very much more relaxed and able to cope with them and cope with life in general much more effectively.


This was especially noticeable in relation to the more ‘hands-on’ one-to-one therapeutic interventions (i.e. acupuncture, Indian head massage, massage, reflexology and shiatsu).Additionally, some participants noticed increased energy levels, particularly after acupuncture treatments.

Reflexology I had that as well and then again, you know, that was really, really, good, that worked well like massage helped, like Indian head massage helped … Well both, physical, physical and sort of mental and emotional as well really... I did feel that shifted a lot of my sort of stress and anxiety symptoms, you know, definitely, so all those therapies I think helped … The acupuncture helped me because, you know, I’ve had sort of obviously anxiety and sort of depression and things like that but I think the therapists were working on me to try and get me more energy as well because something else I was sort of suffering with, was like fatigue and I think it definitely uplifted that fatigue, uplifted my mood.


I liked the acupuncture because it was different and I got a burst of energy afterwards. You know, it took me over.


One thing that did help me, that I really didn’t want to help and it did, was the acupuncture, because I’m terrified of needles. But it did and I know when I was having the treatment I was feeling better with it, but … I think because the therapist was, sort of, really calming, you know, and you knew that there was someone there if you had a panic, you know, if you say “This is hurting a bit” and they’d come and they’d take it out and see if they need to re-put the needle in or… but really once they’d taken it out, that were it. But, yeah, that really did help actually … I can’t explain it properly. It was like I felt lighter; I didn’t feel quite as weighed down with things.


As reported in section 4, many participants reported perceived direct effects on their state of relaxation on both a physical and emotional level. A significant proportion of the Programme involves direct physical contact which gives participants ‘embodied’ experiences of relaxation and healing.

That’s really interesting. You wouldn’t think that laying on your back with a couple of books would really relax you, and your posture and everything. I found that really interesting. I found it helpful. I’ve done it a few times … I do it sometimes when I’m really, really stressed …it just relaxes you. I don’t suffer from bad back … with books under your head. It’s other strange stuff as well like how to walk on your hands and knees… it’s not just laying on your back you’ve got to learn how to get down on your back properly and turn your head and rest of it. She comes around and adjusts you…I think what it does is you feel all the tension in your neck and shoulders, when you lay in that position it feels like it takes it out like all the muscles are relaxing a little bit. Maybe that was it.

[Female, 44, long-term depression, RTA, chronic leg pain]The massage was more of a healing process…I know what an ordinary massage is likely and obviously because I’ve got fibromyalgia, means that hit a fibroid point I nearly go through the roof so everybody dealing with me has to know that. But the woman that was dealing the massage was very tuned into my body and where I was at. At the end of the session I said that was healing, she asked me how I knew, I said I’d had enough experience to know what she was doing and the effects on my body … she tuned in and did what my body needed.


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.The following quote is the same participant, who was more familiar than most with healing and spiritual practice through her Quaker religion. In the following quote she describes how she experienced a noticeable effect in her body. She found that one healing session in particular had initially created a painful reaction but that this had had the most profound effect.

But considering healing is so gentle and there’s hardly any touch at all the difference between the two people was quite amazing. I used to end up with excruciating pain the day after with the first person who did it … The intensity and power though I didn’t mind it hurt afterwards because when she was moving everything aroundIt just felt that it was opening up all sorts of blocked up channels and things. It’s difficult. I don’t know how you explain it. It wasn’t that I had particularly less pain afterwards or anything. My pain comes and goes and a lot of it is depending on how I’m feeling. But it just felt like the whole of my body was better for being opened up somehow ... The day after it was extremely painful but the time after that was much more life giving.


Participants also discussed some of the therapeutic processes that they had experienced during the one-to-one sessions, especially in relation to acknowledging and releasing negative emotions.

One of the other talks we did, it was an impromptu one, the tutor who normally facilitated was ill so someone else stepped in. It was impromptu but that one hit so many bells with me. It really resonated. I think one of the main things I struggle with is not looking on the positive side, that I can do, it’s actually spending time with the crappy bit, dealing with the crappy bit and letting the crappy bit out. I think I’ve always been very fearful of if I actually let go at any point I’d never be able to recover, that I had to keep everything in and everything in check. If I let go of anything it would all <bleurgh>. And the facilitator said something about carrying that all the time, whether you process it or not, it’s there and you’re dragging it around with you whereas if you let a little bit out at a time, you can put the lid on and hold it, but if you let a little bit out then it’s gone. And I thought, ‘oh my gosh’. And for a lot of people that was probably really basic and simple but for me it was light bulb moment. I’m still struggling doing that and there’s still some fear there with it but it was something that really… the wet kipper in the face moment, why hadn’t I thought of that before.


Participant experiences of the Emotional Freedom Technique (EFT) very much related to being able to ‘tap’ into their emotions and feelings. For the following participant, it was the first time they had been able to acknowledging negative emotions that they felt had been preventing them from being able to self-care:

Me and emotions have never been that close. I’m very much a control freak, very much I look on the bright side of things, I’m great with the positive emotions, the more not-so great emotions the more looking at the stuff that’s going on, the grieving that kind of thing has never been my strong point, never wanted to show weakness and that’s helped me tap into that a bit, it’s still an on-going thing but it’s helped me tap into that process and I can actually acknowledge that that process needs to happen which I hadn’t necessarily signed on board for that. That came out of what we did, it was a very important thing. I think that was part of the block and I think that has helped to start to move that blockage that was stopping me looking after myself.


The EFT … that was quite remarkable because I was going through a very bad time with my sister had just died recently and there was quite a lot of problems, family problems, going on and that was just wonderful … and I have used it since because it was just very, very effective.

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Many participants reported that they had opportunities, particularly in the one-to-one therapies to address difficult past issues and felt they had been able to let these go and begin to move on in their lives. Often this related to problems that had started many years previously. Participants had mentioned this particularly in relation to healing, Emotional Freedom Technique [EFT] and Indian head massage, and for some this had been a completely unexpected process. Participants also described the way in which the combined effects of one-to-one interventions and techniques helped them in dealing with emotions as they arose in the moment:

Then [the practitioner has] also given me tips with EFT with the tapping, rather than leaving it you attack the problem. So whatever I’m feeling I tap it out and then I say it out loud and then it helps. It’s helped more than I thought it would do. The EFT and the healing together.


The following participant discussed how she had very much benefited from one-to-one sessions of Emotional Freedom Technique. She felt it was challenged her to question herself and to talk about her fears and take small steps with regards to the emotional impact of ill health and a difficult family background:

I felt it were doing me some good. It seemed to be challenging me to question myself. Through tapping and she used to talk to me, and got me to talk out my fears and it were wrote down and the week after she’d come back and talk through, you … wouldn’t realise what you’d said and then she’d go through it and get you to move on a bit further from it and in a way it were making you do baby steps, wasn’t it.


This participant also discussed how her one-to-one session of EFT had enabled her to identify the some of the sources of her unhappiness (following cancer treatment she had found it difficult to look at herself in the mirror as she felt it had changed her). This was followed with other comments about she made about feeling like she was ‘getting her old self back’, feeling a greater sense of self-acceptance and developing more confidence in herself:

I found it helpful … She found out where my problems were coming from, so it was a case of … I don’t know how she managed to get me to do it but she tried to take me back to where, you know … where my unhappiness had started I think it’s accumulation of things and I think they were trying to say, to alleviate a lot of your problems you’ve got to let some things go, else you don’t help yourself in your wellbeing and everything.


Her descriptions of EFT reflect the following participant’s comments with regard to the physical and psychological components of enabling them to ‘let go’:

… she had a right way of getting it out of me, as I say whether it was the touching, whether you was releasing some of the emotion by you touching, so in a way by doing your touching, I think you was bringing your defence down and then you went into the talking session, it seemed a different way. It seemed to make me open up, it was something I’d never experienced before. I never heard of it before but it were unbelievable how it worked.

Other participants also commented on how the different group sessions had enabled them to get in touch with their emotions and, for some, change their emotional state almost immediately. The following participant describes his experience of ‘Giving Voice’ and how

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singing provided a mechanism for him to ‘open up’ after years of being extremely isolated and closed off from the ‘outside world’:

I do remember a workshop, ‘Giving Voice’ … I know one or two of the other people were not comfortable with that but personally I was because … my personality, a little bit shy sometimes, I don’t want to open out, but I think that singing it actually did something internally it actually opened me up … I think it was fantastic I think it opened me up as a person I really do, and I think I needed at it at that time, because I was very, very shut off with high anxiety, with depression … so yes definitely it helped with all those, with self-esteem, communication, you know, confidence levels.


Another thing I loved was we did was ‘Giving Voice’. I’ve always loved singing because I was an infant teaching, infants don’t say you can’t sing but everyone else, family and friends, laugh at my singing. But I learned from that that everyone’s got a voice, that everyone can sing, you’re told that you can’t or someone else says that you can’t. But the therapeutic effect of singing is amazing. That was just one new thing that I learned, how therapeutic it is to sing to be together. It was just so holistic.


The following participant also commented how she found it interesting watching other people go through a process of getting in touch with their emotions through this workshop and their responses to it (see the Executive summary for another example of this aspect).

I think the first thing was that it felt like I was at home because I’d done it before. I just find it really freeing. It’s a situation where you’re not told you can’t sing, they will say yes you can and accept you. I think there are certain songs that you’re identifying, not so much the songs but the words and the feelings that they generate. It’s fantastic watching other people either loving it or absolutely hating it and deciding to go. I think in that situation it’s really good. It always is good ... I think the whole philosophy is even if you think you can’t sing, you can and your contribution is quite vital to the sound that is made. Even if you’re only singing inside your head you’re still making a valid contribution to the group.


Her commentswere reflected by the following participant who’s emotional responses included sadness and embarrassment and laughter on account of those feelings.

I don’t know why it made me feel really miserable, like sad… it was just like… there was another girl in the same class and I knew she felt the same. We were both just looking at each other. I left first, I just said I was sorry and left. I found it embarrassing … I tried it. I just couldn’t stop laughing. We were singing about “we’re so joyful for this day” or something and I just couldn’t… get into it.


Participants experiences of relaxation through the various therapeutic and exercise session enabled some participants to experience situations that ordinarily would have created a different type of stress response i.e. they had an opportunity to experience being less reactive and had reflected on the benefits of doing so.

If I’d have had Positive Care Programme last year … I would be the person I am today. Yes I still have the odd anger but I have it at the right people and I take it out on the right people. So it has taught me to do things that I would never have done before like topping up my energies if I feel low. Not going to bed and just sort of dealing with life with the EFT [Emotional Freedom Technique]. The thing with EFT is that you have to forgive … And then with the healing and this thing stuck in my chest, I could forgive. .. And I can forgive myself as well because I did lose it with social services but I admitted it. ..I think it was the second block after I’d started EFT. I came

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home on the Friday I put myself in bed and I cried all weekend. I felt I’d done so much with Positive Care Programme since September.


I were coming away from it and we were driving down M1 and I just… oh that’s fine you know, overtake me, you know, whereas before I’d a says… get, you know, boy racers… so that’s calmed me down a bit.

I used to sort of join in rant and rave and I think now I sort of listen and think no actually I don’t think you’re right and I tell people .. Cos I thought ‘you’re just as bad as them and you wanna stop going to the pub’ … And I’ve ranted and raved at her [his wife] plenty of times, you know all these silly things over nothing. I’ll listen to the news and hear something and I’ll just go off one and she’ll say what you going off on one for.


As already described, being in the ‘here and now’ was a theme that was reinforced throughout the Programme. Being engaged in the present moment through the therapies and activities had given participants actual experiences of this. A number of participants discussed being challenged by aspects of the PCP to acknowledge their feelings in the present moment.

One of the group ones we did called ‘give a voice’, I found that at the time one of the most challenging groups to be in and one of the ones that I got a little bit nervous about going into but at the same time one of the ones that I got the most out of. So it was the one that frightened the c*** out of me the most but at the same time I gained the most. So it was a balance, I really need to encourage me to go there but I really enjoyed it. It is a singing one but it’s not about the singing. … We sang stuff but it wasn’t about the words, it was about doing what felt right at the time … It was about really genuinely looking at and acknowledging what you were feeling at that moment in time not ‘this is the song, these are the words’… it was about genuinely listening to what was going on inside and letting that come out. Which was very scary but very rewarding at the same time, I was really bowled over by that one.


Participants described how the range of one-to-one treatments and group activities helped them take their mind off their pain or worries at the time. In relation to this, the Therapeutic Art classes had provided a good proportion of participants with opportunities not only to ‘lose themselves’ but to enjoy the activities and the company of other participants:

I found that quite therapeutic. That was very good.. I quite enjoyed that. I framed it so I just did that, just put love and peace because that’s what it was about. Getting to know people. It was like at home. It was like going from home to home … I found it beneficial to me…


So you were just able to lose yourself in the art part…Trying different stuff ... it was the sheer fact that they’d just said get on that table and do it, wasn’t a case of just sit there and play safe, they just threw you into it, go on, have a go, do it! And you did, you did it, whatever it turned out like … I felt as though I was getting some of my old self back ... I was just able to let myself go artistically … I felt as though I was getting more confidence towards the end of the Programme.


... I loved it, I tried to do as much art as I could … I did it for the six week session but I just loved it so much I tried to fit in a bit of art whenever I could.


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Participants also reported how through Therapeutic Art, they had been given opportunities to experiment withoutfeeling judged enabled them to ‘let go’ and to push themselves past boundaries and gain a sense of achievement.

I did art. It’s great because you can just let go, there’s no pressure for you to be perfect. We are our worst judges. I loved it. When I’m doing art and concentrating on it, you can produce something at the end of one week or two weeks or whatever that you’re pleased with, that you’re proud of and you just forget what’s going on. For me I just concentrate on it and it makes me feel good afterwards…and everybody’s happy and smiling. It’s just a nice place.


.We did artwork. We were given enough guidance and then we could experiment. You could actually… the one thing for me was that it was about expanding your boundaries and your comfort zone with artwork. If you’re really restricted, I noticed what my artwork was like, I kind of always wanted it to be like that like at trademark but how would I feel if I just randomly did something completely different or how would I behave, how would I react, how would it expand my boundaries and how would that reflect then in my life. So it was really interesting. I didn’t think it was going to be like that at all.


4. Increased self-monitoring, insight and acceptance

It was apparent from much of the interviewed participants’ commentary that many had developed an increased ability to monitor their condition/symptoms and had developed greater insight into their physical and/or emotional responses and a greater capacity to take more appropriate actions to self-manage. This included increased acceptance of the limitations that their condition placed upon then and the need for pacing.

It was more structured around ways of helping yourself, whether it was pacing, planning, ways of looking and changing your way of thinking about things, you know, the glass is half full and not half empty, sort of thinking. I mean, a lot of the stuff, I knew quite a bit about because of my background, but I still found it interesting to hear and I thought it was well delivered. You know, I didn’t think, “Oh, God, how much longer before I can get out of here”. I did actually think this is good. I mean, it refreshed some of the stuff that maybe I’d forgotten as well. So even coming as a health professional, I could still take away quite a bit of information.


Participants were able to explore different models of health that they might not ordinarily have come across, and which gave them new insights into their condition/symptoms and how they managed their lives. The aspect of the Programme which seemed to impact on this most was the emphasis on experiential learning with regards to mind, body and spirit which involved:

Self-reflection on different body states Greater awareness of mind, body and spirit New understanding of the self Acceptance of the limitations resulting from condition (s)

A large proportion of the PCP involves therapeutic contact or workshops that actively engage participants and provide opportunities for them to experience their bodies in fundamentally different ways. Body scanning is used in many SMPs to increase better symptom detection and this was very much an important aspect of this Programme. Participants were asked to

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reflect on their own health needs at the beginning of the PCP and at each weekly session of one-to-one therapies.

It seems a funny phrase, but what’s coming up is an appreciation of the feelings in my body which I think actually is a big part of the Positive Care Programme. It’s sort of more control. I did feel before that I was pretty in tune with my body and that I controlled … not I controlled it or it controlled me but that we lived together. That’s really weird. It seems silly to say but I feel more comfortable with my body. Not that there’s necessarily less pain but just more in tune with it.


Through therapeutic touch and also acupuncture, participants were asked to reflect on changes in bodily experience as they were asked at each session whether they noticed any differences. This enables greater ownership to be taken and in turn participants can use this feedback to inform their future decision making with regards to better self-management.

I don’t know what it is. It is sciatic but it moves around you know they’ve explained to us why it is happening you know why the right side body is off sometimes and gets so painful and now why the left side body is now. So in a way I understand what is going on more, what’s going on with me more than before.


Shiatsu … I liked to go into that, but actually I found it really hard because you need to get down on the floor … but that was the only reason I had problems with that. I’m not sure how much it helped me, but it was nice. You know, it was like a form of relaxation to me more than anything, you know … because I’m not good at doing it … It helps me cope with me better … It’s hard to explain it, you know. It’s not that I can cope with it [pain] better, I can, sort of, isolate where it actually is … it’s actually my spine that’s hurting or my hip that’s hurting, you know, and I can, sort of, work out, ‘Yeah, that’s the only bit that’s hurting, so…’ Yesterday I was hurting everywhere … and my friend said to me, ‘Well, what do you mean you’re in pain, whereabouts are you in pain?’ and I said, ‘Well, take a choice’, you know. A choice, my knees, my hips, my feet. And that’s, sort of, when I know that I’m on a bad day when it’s that bad.


As already touched on earlier in the report, there appears to have been a higher degree of engagement in workshops that involved participants more actively than the ‘talk and chalk’ group sessions. Having the opportunity to ‘experience’ a range of interventions and inputs was particularly important in relation to the acquisition of skills and techniques through practical experience and regular guided practice.

You get to find out about sort of other things you’ve never really heard about, sort of diet, exercise, sort of things out there regarding communication and things, how to sort of communicate effectively, and I think that puts you in good stead for after, when the Programme finishes, I think it builds like a foundation really so that you can take on those things, and after the PCP you can sort of basically, you know you’ve got the tools then to use then after the PCP, you know, when it finishes.


I’ve got the tools to deal with them. I know it sounds ridiculous thinking about meditation or bringing yourself back to what’s happening. Not worrying on stuff unnecessarily and stuff that you can’t do anything about. Living in the now… what is it? Yesterday, what is it? Today’s a present, you know what I mean? Don’t keep flapping over stuff ... I have to think about it sometimes. You do have to force yourself to think about it sometimes, it doesn’t just click in.


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Alexander technique, Thai chi, yoga … I loved everything like that ‘cos it was all good for me moving myself and me limbs and the only sort of exercising, even your mind it sort of stimulated your mind through your body. You know this thing were you grounding yourself and being like a tree and the earth, it’s all relative.

[Male, 55, depression, back pain, high blood pressure + cholesterol]

First set of meditation was just actually meditating and the second block was like… it was like practical as well. She was writing on a board, telling us certain things about healing herself and all that. It was okay … it was called meditation but it was two different teachers as well.The first one [was better]not the written one, the one where she actually, at first I thought I can’t sit still like this because I fidget, but it was good. She actually got you to sit still and into right position to breath etc.


And the massage again, the tension in my neck, we talked about that and she gave me a few strategies I could do myself. It’s something as simple as just putting a wheat bag on your shoulder. The first week she said the wheat bag and I was sat doing it in bed at night when I was reading but then she said you don’t do it longer than five minutes because it’ll have the reverse effect then. She qualified that then and I did it right next time.


Participants reported that these types of interventions enabled them to experience themselves differently and gave them insights into the possibility of living life differently. For many these experiences of doing something different, having a body experience that was different from going to their GP for medication or talking with a counsellor and actually experiencing observable different states, even those participants that felt were not changing anything significant in their health status, just having a sense of support and care from the environment of group and care received from the therapists enabled them to sense that things could be different in their lives.

It’s opened doors and opened doors in my mind because it’ s given me a little taster of doing something different and I liked it ... It’s opened doors in the view of me wanting to do different things and to live a normal life … I don’t want to spend the rest of my life isolated and not have any contact with people so it’s just taking baby steps towards that now. I know that I do want that. I miss not having that contact really and I miss not having a normal life ... It’s sort of unlocked something really ... I wasn’t seeing anyone before at all apart from my family. It has helped me … I’m sad because I couldn’t do everything but really nobody knows how much that has helped me … It’s opened up doors that I do want to get back into reality and start living a proper life.


The whole Programme focuses on different aspects of mind, body and spirit and participants were able to experience a broader sense of self which included aspects of spirituality throughout the Programme, most importantly, in a secular way (i.e. neutral and objective regarding the different beliefs that people have).

Just mentally, like how important it is to look after yourself not just physically but mentally spiritually and emotionally but I’ve learned how closely they are all linked. That was quite a key aspect because they looked at you … because they referred everything as a holistic approach and also gave you more understanding about how you care for yourself in different areas of your being not just physical, not just mental, not just spiritual. There was spiritual as well. Not just emotional.


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Just really reinforcing the message of mind body spirit. How you think and how you feel affects everything and tools like EFT, [Emotional Freedom Technique], that was on the Positive Care Programme. Tools in your toolbox I call it, things to help you.


And the reflexology I knew would work anyway and that was great. and the reflexology helped me. I think that helped more with overall being, as my wife called it, because she saw I relaxed a bit more. She saw... when I’m in pain I’m very tense and my shoulders are up, where when I’d had it I’d relaxed a lot more. I didn’t notice it I must admit. I didn’t notice it. But my wife said, you can tell you’ve had it. But when everything else is going on you don’t know what it is. Is it one or is it the other.


When somebody says you’re going meditating the first thing you think is a guru giving it all that. But when you... when they talk to you about how it is, it’s not. It’s just an impression you’re given by the media about what it’s about and when it’s presented to you differently in a way you can understand, which it was, I fell into it. It was really easy. And there were people in the class that struggled with it, they couldn’t do it. It was just something that it worked for me. And that was the big one, massively. I look forward to kids going to school every morning!


Some participants were quite sceptical but nevertheless managed to engage with aspects of the Programme they felt most comfortable with. Interestingly, irrespective of whether participants were Muslim, Hindi, Quaker, or Christian they managed to incorporate aspects of the Programme into their lives. The following participant who was Sikh reported no issues of conflict with his belief systems and had continued his meditation practice in ways that resonated with his religious practice. He made a clear connection between his experiences on the Positive Care Programme and how that had strengthened his religious practice and enabled him to overcome anxieties that had previously restricted his capacity to socialise and also enabled him attend his temple on a more regular basis:

I listen to Sikh hymns, prayers, that’s part of meditation, I think I do that more often now than I did before, because, you know, meditation came up in the PCP, I know a little about meditation but I think it’s reinforced everything for me … definitely.


The contribution that spiritual practice plays in people’s health and wellbeing is now coming to the fore in general practice as being a fundamental aspect often neglected in promoting self-care and this was reflected in some of the comments participants made.13

that’s what’s surprised me … I know they’re trying to offer a lot more care like this in the national health, mind and body, aren’t they, they’re questioning it.


There’s nothing holistic about it [the NHS]. Individuals within the health service can be holistic but … it’s not … that’s the beauty of the Positive Care Programme, it is holistic and it’s not dealing with you as a list of symptoms it’s dealing with you as a person and handling it, to help them develop.


The following quote highlights one participants’ attitudes towards concepts like ‘energy’ and ‘healing’ had changed over the course of the Programme, and how she was using exercises which incorporated these concepts in her daily self-care practice. Although the following is

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quite a long quote it demonstrates how the different elements on the course helped her to not only let go of the past but also deal with emotions in the present:

One day I had a pain that I could feel stuck in my chest like an enormous lump,…The woman that was doing the healing, she kept saying to me take a deep breath and push it out. My main problem is that if something gets on top of me I don’t talk about it I bury it, and … I’ve got stuff buried from way back when I was a child. Then when I finished and had this pain, she said whatever’s there has been there for over twenty years and I thought how the hell on earth does she know how long it’s been there basically? … it was just weird … confusing. You don’t tell them much about your past… you just tell them what you’re there for at the time … I went in there, not closed minded, but thinking how on earth is shiatsu, healing going to help get me back? Counselling didn’t work so how on earth is this lot you know?

… every time I did healing I got the feeling I was losing something. I just felt like I was on cloud nine, I didn’t feel heavy anymore, I didn’t feel hatred anymore, I didn’t do that heavy footed that I used to do and the walk that I had. How something like that was so wow … Then [one of the practitioners] gave me a sheet that showed me how to top my own energies up. Before I finished the course we did this thing on that and it was strange because I could see like a ray of light shining down from the left side, and I could feel this light and see it. And every time I would go after that she’d know when I was feeling down because my auras change. I thought yeah whatever, but then as I did more of it, and I did five weeks of it, it was just like wow.

Yoga was absolutely fantastic … You can visualise things you don’t have to physically do them. I’ve never heard of visualisation … They do like the earth moves where you imagine you’re lifting this heavy weight and you’ve got lift it up and push it down. After I’d done my healing and came back off my holiday, I couldn’t visualise that weight at all. I thought I was doing something wrong … Then the following week it happened again and then the tutor came up to me and asked if I was alright. I said I was sorry but I just really couldn’t visualise that weight. So she looked me and said why? There’s no weight there. I feel like I’ve lost all the heaviness that I’ve had for over twenty years … I’ve had that heaviness for so long and I did drew yoga, but now because there’s no heaviness I can’t visualize it. It’s fantastic. I thought wow.

If you can’t visualise it, don’t force it into your head she said all you have to do is do the movements. Just move slowly down. She said if I ever get that heaviness again just focus on what you think it might be and then get rid of that. I mean the last week I did have that heaviness cause I had the guilt back; but I didn’t let it… so I did that and it was like a couple of days later there was no weight again … I do it once a day right before I got to bed unless like last week when I had that thing with social services I do it every day, but then by Monday I didn’t have that weight anymore. I’d dealt with it, I dealt with the guilt and the anger I dealt with how I felt.The EFT … [the practitioner’s] ... tips on how to do it. I have to do it with words, there’s no way you can do it with your mind and the energy topped with the healing and just the advice you get from all the therapists.

Even now I am sceptic because I don’t’ believe in anything like that, I never have. It’s just great because now [as a volunteer] I can tell everybody that’s coming on the Positive Care Programme about healing and how it affects different people and what my experiences were. It’s just great to know that I’ve got through the last nearly two years and in five weeks I don’t’ have that hatred anymore.


An important component for some people was gaining a better insight into the limitations that their conditions created in their lives which enabled them better to accept their condition and capabilities. The following participant acknowledges the impact of her conditions, physically and in terms of medications, but also has a sense of getting on with her life, and being in a

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better position to do that. This included the ability to ask for outside help and support and the capacity to develop the confidence to make those steps.

What I’m left with now I’ve got to live with it, they’ve told me that your muscle damage it’s there, you’ve got to live with it, I’ve gone through the cancer … it’s left me some problems but I’ve got to tick … fair enough I’m strong enough to deal with what happens to me, but I’ve got to be strong enough to take myself forward now, I’ve got to live the rest of my life and that Positive Care Programme has shown you ways of how to question yourself, how to go out and seek help and there is places out there that can help you as well, even if it’s mentally, physically, artistically it’s there, go out and seek it.


I mean for one thing was acceptance … how we are and not beat ourselves up about things that we can’t do, because my mind wants to do so much but my physical body, and you know, accepting it and meditation ... and some of the talks that we’ve had there you know, I think it just reinforces that we can only do what we can do, there’s got to be an element of acceptance as well and I think that’s a big thing, a very, very big thing personally for me.


I suppose it’s made me question myself a bit more why I got as bad as I did and could I have done anything different to get myself out of that and so I do, sort of, try now. Because I said to a friend a couple of weeks ago that I’d sit and do nothing and she says, “Well, how can you say you do nothing because you’re reading, because your books are next to you; you’re doing your sewing because there’s all material; you’re stitching because there’s a pile of… you’re doing things all the time, you just don’t know you’re doing them”. You know, and it’s made me stop and think about actually … what I do, do, which is quite a lot actually, good. I just need to be able to get back to work now, but I don’t know if I can. So, you know, we’ll get there.


Quite a number of participants discussed the process of acceptance of their condition and this is reflected in the following section with regards to better pacing.

When I first started it all felt difficult actually … I felt as if I was, instead of spending the morning washing or tidying something away, I was just letting someone else look after me and that was really, really hard. That was hard … So it’s actually quite important to me that I found giving myself, not an excuse, but permission to be poorly now and again … I think I was just getting to that at the end of it, when I, sort of… and I think I had just gone about a monthbefore the end and I was just getting to a point where ‘Actually I like this now’ … quite a big thing, I think.


5. Developing constructive attitudes and approaches (confidence in ability to cope)

The Programme had provided participants opportunities to self-reflect on physical, psychological and in some cases spiritual levels. Through exploring these perceptions and experiences they had been able to take on more constructive attitudes and approaches to their lives and in coping with their condition(s).

I have a friend who has been on the Positive Care Programme, we were chatting last Friday and she was saying what a privilege it was to go on the course and to meet other people, to see how much worse off they are and how fantastically they cope. She was also saying it’s very interesting seeing people who’ve never considered things about their life, reacting and learning and growing from it … even the bits that I didn’t like were all raising your awareness of how you cope, what you do, how you deal with things.


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I think what you do… the course teaches you to identify your problems before they snowball. To pick up on when you’re feeling fed up or whatever and starting to identify what I’m doing… there was one lady who said to picture what’s wrong, then throw it. It’s really hard to explain. But afterwards what they say changes what you think. All this sounds really airy fairy now but it does work, the workshops do as well. You just pick little things up and then you identify and think oh I do that, that’s what I do. Instead of the glass is half… do you know what I mean? It just comes in your head every so often and you think you’re doing it again.


Achieving a greater sense of control of their lives and less a hostage of their condition as a result of participation in the Programme was particularly marked for some of the participants who had entered the Programme with high levels of stress, anxiety and depression.

It helped me because it made me, it prompted me again about what kind of life … what kind of lifestyle I want for myself. Being able to stand up and be counted. It doesn’t matter what kind of problems you’ve had, have some more confidence about who you are and what you’re about. I think that’s mostly what the Programme showed me that it takes all sorts to make up this world. I think that’s one thing that it kind of set me on that journey if you know what I mean. That journey of self-discovery, things that would work for me.


Positive Care Programme’s helped me gain more confidence to go out that front door to face basically what I have to do every day rather than staying in bed every day or crying every day which I have been doing. I’ve got to the stage now where if I have a bad day I don’t stay down, I get up and go.


I felt very much more relaxed and able to cope with them [symptoms] and cope with life in general much more effectively … one thing they said, if you are going out in the car and you’re getting quite stressed up, you know, try to stop and breath or sing a little song about “I can feel happy” or various things like that. So it’s, yes, taking control, you’re more in control, as it were, rather than the situation letting you feel panicky or upset or worried … Or if you are in a situation where you are getting quite tense and agitated with people, you can just sort of think, Oh well, you know, as they used to say … little mantra things to do or walk away from it or whatever, just very practical things, but invaluable nevertheless … I think it’s not feeling as anxious and as concerned and knowing that there are ways to counteract these things and also because through the Action on Pain Group, which is an extension of this, they would have meetings where you can meet other people and still talk about things and so on, but it’s nothing like the Positive Care Programme.


I think what it did help me with was to change my thinking a bit about taking care of me, you know, that kind of thing. And as a result of that I have got quite a few meditation type tapes and stuff, one which I bought there.


As already described in the last section of this report, positive and constructive thinking were elements that were weaved throughout the Programme and reinforced through regular interactions with staff who were extremely positive, up-beat and supportive. Further to this participants were given the opportunity to explore negative thinking in one of the group workshop sessions and to develop skills to change their thinking patterns through techniques picked up in several of the group work sessions.

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I think if you’re in a set way of thinking, I think it can change the way you think, more positive. You get caught up in your own little thing and go down that path. It introduces other ways of thinking that things aren’t so bad. They never patronise you, none of that, they’re really nice people, lovely people, welcoming. You want to go again and it does change… they can change your way of thinking. They do change your way of thinking and introduce new ideas to you.I think it’s the whole package and the learning. It’s a learning process with it


It made me think differently … like that brain gym … she told us thinking of the now … it’s like me meeting you out on the street but you haven’t seen me and I think you have and think you’ve ignored me. And I’m like ‘how dare she’, ‘why’s she done that to me’, ‘have I done something wrong to her’ and even though I know I haven’t, I’d focus on that and it’s made me realise that I don’t’ have to focus on that anymore because that person may have genuinely not seen me or if she wanted to avoid me then good luck to her … Where a lot of things used to bother me before … I’ve learned that I’ve got to accept that I’m not doing anybody harm or anybody any wrong and I’ve got to focus on me and getting me right and not worry about other people. I used to think…stupid little things that’d niggle my mind. Now I just think I focus on, or I’ve got some pieces of paper from the course that I pick up and flick through them again … and think I’m going to re-read them and I’m not going to use all my positive energy on negativity. That’s what I did learn from it ... because negative thoughts make you do and think silly things. Now I have to think positively.


The majority of the educational workshops incorporated aspects of positive thinking and encouraged people to change their mental attitudes to their health and wellbeing and the way they approached life in general. Positive thinking was also very much reinforced during participants’ one-to-one sessions with therapeutic practitioners. The following quote is a continuation of the conversation with the person quoted directly above. Here she describes how through being encouraged to think more positively increased their motivation to achieve change.

…they make you go away to think positively more than anything else. You go away … I found that when I felt down, I walked away feeling positive. I couldn’t say a lot to feeling a free spirit because I didn’t but I walked away feeling more positive than I had when I went in feeling really low. Some days I went in, one day I was actually crying, and then by the time I did leave I was happy. I had that happy factor inside me and I thought I’m going to go home and do this and do that … I felt more motivated coming away from the class each week.


For some participants a benefit of the Programme was to remind them to self-care and to either ‘put them back on track’ or just support them in terms of their own journey of self -development.

What I thought … not time out in the sense that I’d have two hours a week or whatever, but time out as part of a lifestyle rather than token gestures of time out. Like by eliminating thinking patterns, eliminating lifestyle, evaluating caring for oneself. Kind of the thinking behind it. I’m not saying that I haven’t thought about those things, they certainly acted as a catalyst and certainly put you back into the right area and direction … the importance of that kind of care and the nurturing because understandably a lot of people that attend Positive Care Programme have lack of that more so … that is crucial to be able to identify with that and do something about it.


I think my outlook has changed but I think it’s not, to be fair it’s not entirely due to the course … Because I think for me there were other elements of personal development that I was embarking

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on anyway, that I hope, I’d like to think that would have been going alongside the Positive Programme, it’s the Programme sort of gave a different aspect to it.


Summary

From their very entry into the Programme participants were encouraged to reflect on their own motivations and experiences and take charge of their health behaviours. What and who they engaged with also provided a different sort of experience, one grounded in choice, experimentation and exploration and self-reflection. This broke down into a number of aspects of the participant journey from entry point, to engagement, to the intervention itself and future actions (i.e sustained self-care and management). Because of the ‘invitational and exploratory’ nature of how participants enter the Programme, this provides opportunities to engage ‘hard to treat’ (ME, fibromyalgia) and ‘hard to reach’ (BME and carer) groups. The self-referral process means that participants’ sense of responsibility for their own health and wellbeing is being engaged. Self-referral also enables participants to engage at very different points in relation to ‘stages of change’, because there is no requirement for them to be in state of ‘readiness to change’ from the outset.

The weekly ‘blocks’ of treatments, workshops and exercise activities continuously re-engage participants in exploring a range of options without any pre-set agenda to ‘move participants on’. Intrinsic to the therapies, workshops and exercise session was the fact that participants were consistently reminded to focus on the ‘here and now’ and had opportunities to reflect on and address their immediate needs at each weekly session. This cyclical process of re-engagement separates out the PCP from other interventions such as CBT, which does require a certain ‘readiness to change’ for participants to be able to benefit and other, more manualised, SMPs which use ‘stepping up’ approaches to skill acquisition. Meeting people at the point they are at when they join the Programme was very important to those participants had been socially isolated and lacking in self-worth. Participants could tailor their experiences on the Programme with the on-going support and help of those people delivering care, providing a model of co-production with highly personalised care and support.

Participants’ experiences (both positive i.e. pleasurable or relaxing or negative ‘I cried) seemed to provide constant positive reinforcements which shaped their future choices and decisions about their care and their own actions in the present moment. The infrastructure of the PCP and the flexibility of staff to accommodate participants that would be difficult to achieve in other SMPs, for example, enabling participants with high levels of social anxiety to engage in only the one-to-one sessions. This flexibility facilitates continued engagement for participants who would ordinarily drop out of group-based SMPs.

Many participants had joined the PCP at a point in their lives where they were feeling extremely ‘stuck’ having spent years with little or no hope that any shift would be possible. What was evident from the interviews was how even the smallest of changes had given participants a glimpse of the possibility that their lives could improve, which in turn gave them an increased optimism for the future. In trying to draw out the perceived mechanisms of change and what was different in this service, a number of personal and interpersonal themes emerged. For many, their experience of themselves, their health and their role in their health care behaviour had changed since attending the Programme.

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Participants reported a number of factors that they perceived to support them in developing the foundations for better self-care and management, these included: developing self-worth through feeling valued and accepted, feeling supported through social contact and having opportunities to model health-directed behaviours. Participants also reported perceived direct therapeutic benefits as a stimulus towards change and how PCP had enabled them to increase self-monitoring, insight and acceptance of their conditions e.g. better pacing. Many had developed more constructive attitudes and approaches, which had given them confidence in their ability to cope (self-efficacy) and greater knowledge, skills and confidence (activation) to manage their long-term condition.

The following section describes how these changes were being implemented and continued once the Programme had come to an end.

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6. Sustainability

We conclude this report by looking at perceived outcomes in relation to one of the main aims of the Programme: to empower participants to better self-care and manage their condition.

Because this Programme wasn’t about fundamentally changing yourself, not about doing things and handing out formulas, it was just about caring whatever, wherever you were, however you were. So it was more about caring and accepting yourself rather than caring and changing yourself to something else. Obviously if you care about yourself you’re going to change, but it’s far better when you change rather than someone tells you to change and that doesn’t work and you’re back to square one.


The following section also looks at the ways in which participants had continued to engage in self-care and self-managing activities. Participants who were in the ‘sustainability group’ had completed the PCP one year prior to the interviews and this enabled us to explore how participants were coping in the longer-term.

Developing health directed behaviours and skills for self-management

From the interviews it was clear that participants had been encouraged to take up daily practice of ‘health-directed behaviours’. The Programme delivered a wide range of workshops, one to one therapies and group exercises that incorporated aspects of healthy living.

Pacing activities

For those participants who had previously led very active lives and who had struggled to cope with the restrictions imposed by their ill health, learning to pace themselves had been an important aspect to managing their condition(s). Some described how they were now taking steps to avoid what they termed a ‘boom and bust’ cycle. Better pacing enabled them to recognise when they needed to stop and rest and more importantly, to ‘give themselves permission’ to do so.

But you just don’t sit down and actively relax really, but I can do that now. So that’s good … I felt as if I was, instead of spending the morning washing or tidying something away, I was just letting someone else look after me and that was really, really hard … So it’s actually quite important to me that I found giving myself, not an excuse, but permission to be poorly now and again.


Some of it’s more like just sitting and just being,I don’t know if you could actually call that meditation, but I mean I did it before you came today.I’ve always led such an active life, you see, and now it’s hard because I can’t… but what happens is … boom and bust … you kind of push yourself through the energy… and then you pay for it because later you’re knocked out then ... you’re absolutely exhausted. So, I‘ve been trying it, and I’ve filled the diaries in and stuff, but I think I’ve got the knowledge and I think I’ve found my own way through things really, you know. But it has given me permission to not feel so guilty if I need to rest, and not to get worried too much about my housework … I think it’s more about me not feeling guilty about spending time for me. I think that’s been a big one … that was the thing on that day, knowing that I was going to go there and spend a few hours and it was all just for me! Wonderful.


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Just so relaxing, that for me is a big thing. I live on adrenalin to be honest. Because of the fibromyalgia and the other things … they’re quite closely related to ME type stuff but I’m determined to have a life ... I think I am probably more laid back to be honest. Yes I did some cleaning … but I’ve got better things to do with life than clean. I think probably before the Positive Care Programme I would’ve been a bit like ‘what would your mother think if she thought people were coming to your house in the state it’s in’. I was quite surprised thinking about it that I did want to do some cleaning but I didn’t feel anything like as pressured as I would’ve done. I didn’t think about that before…


I know even though my health physically has deteriorated, the fact that I’m not constantly in a panicked state of am I doing the right thing … should I be relaxing now or should I be trying to do something, more the ‘listen to how you’re feeling. Do you feel like you can get up Part of the ME thing was doing it in little bits, don’t think because you’ve got up you have to do it all. Once I’m moving and I can feel it’s coming in I think just finish because I know once I’m on that couch I’m not getting off. But it’s trying to incorporate those two things together and go ‘the aches are coming in so why don’t you rest?’ and ‘if you can’t finish it off, you can’t finish it’. But if you listen to your body you might not need to rest as much than if you keep pushing it to the wall and I’m not pushing it to the wall as much as I used to. I think I’m accepting the fact that I have to spend time on the couch.


Well, some days I do have really bad days. But, yes, some days I can still feel like that … I try not to beat myself up about it now, which I did do before … and if I were poorly and couldn’t get out of bed, I’d just sit in bed and feel really guilty that I’d not got out of bed, you know, because I wasn’t well enough to get up …[now] … I just think well, look it’s been months since you actually were that poorly, if you just take one day out, just to look after yourself and just do something for you, whether it’s just sitting and reading in bed or just curling up and sleeping, it’s one day. You know, and it’s not even probably going to be all day. If I accept that, I didn’t always accept that, you know … Still not at the loving myself bit, but I’m getting there.


Yes, it has, because I’ve found that I do want to get out more, but I am planning what I’m doing much better which enables me to do the things I want to do. Whereas before I would be liable to the do the things I wanted to do, but then I would go into a boom and bust cycle. So I would overdo it, crash, be in lots of pain, not be able to go out, have to take more medication, maybe take a week or so to stabilise and then come back up and then do it all again. Whereas now I can sometimes exert myself way and above what I would normally plan to do, but I would be able to recover much more quickly than I used to be able to do because I’d be planning my week up before, building up my reserves and then doing less afterwards. So I’d be taking more care of myself. And it has improved my abilities so much more that I am thinking more about increasing what I am doing and the volunteering at PCP is part of that.


As the above quotes reflect, these pacing activities are extremely helpful to participants that have ‘hard to treat’ conditions and where fatigue is a common component e.g. ME, fibromyalgia.

Health-directed behaviours

Many of the participants had already examined their eating habits prior to the Programme and for some the nutrition workshops had been useful in confirming that they were ‘on the right track’.

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I probably eat more fruit I think. Yes I think I eat more fruit than I used to. I’ve always eaten vegetables. But if I go into Leeds I’ll sometimes go to the market and get apples, pears, bananas, so I’d say I eat more fruit than I used to do ... if you look in my cupboards I do have some herbal tea which I do drink every now and then which I didn’t before


The session is run by Nutritional Therapists who focus not only on diet in terms of healthy eating but also foods and beverages that may alleviate certain symptoms, for example, one person who had cut out caffeine from her diet and replace it with ginger tea reported an improvement in their continence. She was also taking steps to incorporate more healthy foods into her family’s diet.

I try to give them like toast for breakfast if they want cereal, just alternate it and make it interesting. So one day I’ll do egg and do different things rather than being addicted to easy, convenient. Honestly I was just cereal, milk and that was it and I could live on it all day. Now I’m thinking I’m not going to have cereal I’m going to have egg and cook, I do egg, scrambled egg. Maybe some rice like the Chinese do ... I don’t say I’m eating healthy as she does I eat a lot of bean and frozen spinach, my children don’t like it but … I try to do that for me, but my children it’s not easy they still want their own pizza and things. But I tell them about it I tell them I am eating healthy spinach you can eat it if you want, maybe in the future you know.


The following participant described improvements to his eating habits which in turn was alleviating his Irritable Bowel Syndrome.

So I’ve taken quite a bit away. I’m also pacing myself better. I’m also eating better. What I tended to do – my wife’s out at work all day – I would maybe have breakfast and then I’d maybe skip lunch and then I’d have a big meal at night and the sessions we had on diet now I’m having smaller meals spaced out more evenly throughout the day. So my energy levels are much better and I have found that’s helped quite a bit because I do have some problems when I get stressed with IBS and things like that and that’s really helped that settle down through smaller meals.


Accepting and adapting lifestyles

Few participants discussed practical changes to devices or equipment that aided them in coping with long-term physical disabilities and this was not covered in the topic guide in the interviews. However, one person was making steps to adapting or moving their home to enable greater access and increase her mobility in terms of being able to go out in her ‘buggy’. The only other example was the one participant who had enthusiastically bought a walking stick to match every outfit as part of accepting her condition.

This helps starts the process of working out who I am now, not only working out but starting to accept it and come to terms with it. When I see people hobbling around with a stick, other people see me. Just little things like that, it came at a really good time for me because I was really not wanting to use that. But I have loads of sticks now, I have them in all different colours because I was like if I have to use one then it’s going to be an accessory ... we’ll get all of the colours to go with the different outfits... Instead of having it as a negative it’s become an extension of my personality and I’m certain that because I was at the Positive Care Programme at the time that helped with me incorporating that.

[Male, 50, ME, musculoskeletal pain + stiffness and fatigue

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Relaxation and stress reduction activity

The hour-long group workshops were themed into four groups but all incorporated a range of techniques to increase relaxation, focus the mind in the here and now so as to generate a sense of wellbeing.

I think reinforcing things that I knew, giving me things that I knew from another angle and then making me aware of things that I didn’t know about. Just again reinforcing the message of breathing, positivity, mindfulness, being in the here and now, all these things that I know but sometimes when you’re in the depths of depression or anxiety they tend to go out of the window but having it reinforced like that… For instance last week [whilst volunteering on the PCP] one of the tutors mentioned how years ago she kept a book and at the end of each day she wrote down three things that had happened and it could be something as simple as looked out and saw a robin hopping from a branch. It doesn’t have to be anything. And to write those down. Well I’ve done that, I went to Paperchase and got a nice notebook to put them in and I got one for my husband as well. I probably heard that somewhere before in the mists of time but it came at the right time and I thought I liked that idea, doing that, so I’ve done that for a week now.


All participants had learned at least one or two techniques that they could employ to address either underlying stress levels on a regular basis or to deal with stressful situations.

I was a nurse and I didn’t know how to shake myself … I’ve been there and I know who my client is you know it’s not like ‘working’ [NHS treatment]...I used to get depressed constantly. If you have a pain I feel the same pain that’s my problem so I couldn’t carry on with my job and now I learn how to… that’s the only issue I have I said I cannot face people because I think I cannot stand them I think they are like needles in my face. She said to me, she said, have a shield. She told me how to kind of have a shield. So yes I learned.


It certainly helped me, yes. I mean, I go walking now, which I wouldn’t have attempted to do before, I think because I can fall back on these things … like, some of the little mantras they gave us. Like with the finding your voice, there was little songs you could sing when you got distressed or something you could sing these little songs. The other, particular Tai Chi was little words that you could say to yourself, positive sayings that you could say. So, yes, it is a totally different outlook on things.


I’ve really tried to work on my mental aspect so meditation seems to fit with that. I used to suffer so much anxiety that it was unbearable but I think looking after myself more physically and meditating seems to work better for me


The positive thinking, because I still try and do that now, you know, and meditation I keep saying that I’m going to do more meditation and I do try now and again, but I am going to do more meditation.


Stress-reducing techniques included meditations and visualisations thatparticipants had acquired through the various activities (EFT, Dru Yoga, Meditation, Mind Spirit Body Workshops). These techniques were particularly valued by participants who had come to the Programme with a high degree of stress and anxiety. These techniques were helpful in managing their condition on a day to day basis but also at particularly challenging moments.

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I have nights where I wake up and I do the breathing technique and how to meditate on energy. I do that technique … Every night I wake and jump up and do that and usually it’s difficult because all the insecurity ... With this technique I don’t think about those ... I try to focus on this positive thing which is meditating and focussing on something which helps me to eventually go back to sleep rather than just start to dig in the past and feeling sorry, you’re sad, you’re crying. I think yes I can I’ve broke that cycle now and that’s great … I’ve got some CD’s from the Positive Care Programme so I do them if I’m really bad, today was a very nice day, I went out, I try to do things to keep my mind occupied and you know as much as I could I try to seek positive things. Look on the bright side of things, I try my best.


I’m doing meditation daily now … I did 5 weeks meditation, I learned how to meditate on the course, but I don’t expect anything for 6 months or a year, I know the complementary medicine takes time.


I go to a meditation class once a month at my local community centre. Because that’s the big one and it really has helped. I’ve really tried to work on my mental aspect so meditation seems to fit with that. I used to suffer so much anxiety that it was unbearable but I think looking after myself more physically and meditating seems to work better for me.


I’m doing meditation at home now through the healing ... I got a mediation CD, so I started doing that as well … most days. I may miss an odd day but I’ve been doing it every day.


Well, I think the biggest thing, apart from the pleasure of actually going there and meeting people, is the breathing thing … [learned in Dru Yoga classes] …Now, whilst I’m not saying I put that into practice as such, but I have been able to practice my breathing more and I know what to do now if I get really anxious … because I do get a lot of anxiety and I can stop and, sort of, bring myself [back] … I mean, I’ve done it even when I’ve been out shopping because sometimes I get quite… I don’t get panicky … but I do get quite anxious and agitated and then I can, sort of … just a couple of little things that we did in a group there about thoughts and I get a lot of problems with racing thoughts in bed at night, my head won’t stop and just to say, “Stop”, but in a really, you know, “STOP” what’s my next thought going to be, that was one of the tips, but I find that really helps because it just, kind of, interrupts what’s going on … Another thing I took from it was … Sometimes when you’re getting all aerated and frustrated to listen to what’s going on and bring yourself back. It sounds so airy fairy doesn’t it this but it does work … instead of fretting and being like … ‘where’s this?’; and ‘I haven’t cleaned up’ all this lot, you just stop what you’re doing and listen to what’s going on and ground yourself. I do, do that. I do it in bed at night when I can’t sleep as well …I’ve picked up more positive ways of thinking, not negative all time. Instead of thinking ‘oh c***’ … and stuff like really basically there’s no point in worrying about what you can’t do anything about … Sometimes I think why am I worrying about that when it’s not even in my control. I can’t worry about what my son’s doing when he’s out because I can’t do anything about it and worrying’s doing me no good. I’ve taken all that from it. I never used to have those thoughts at all.


I’ll tell you what I do, do actually and I did it this morning as well, I’d got up and the first thing I did instead of making a cup of tea was go outside and just stand on my balcony and just let the sun hit my face. Because I remember one of the teachers, well therapists, there saying looking at getting direct sunlight … so I do try and do that when it’s sunny, it just isn’t very often sunny, is it? … It does actually [make me feel better] … But it would never have occurred to me … But taking

my glasses off and being out is different ..I can’t tell you what it is, it just feels different.[Female, 50, fibromyalgia, ME, spondylitis, IBS, PCOs]

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Creative activities

Participants also discussed how some techniques enabled them to focus their attention away from symptoms of emotional and physical discomfort and pain through active engagement. This was particularly evident in participants who had found Therapeutic Art of benefit in this respect. Several participants were continuing to create artistically at home or had joined a group. One person had set up a weekly creative art day at her home with friends and neighbours, another had set up her own book group and others had joined singing classes.

The one that had the biggest influence on me was ‘finding your voice’ … and, as a result of that, I’ve joined a choir … And, just to give you an example, there was a lady there who had the most amazing voice, I mean she really was wonderful, and she just cried because she said she had never been… she had been told at school she couldn’t sing and we were just astonished because she was just, oh, she could have gone on X Factor on any kind of those things, right. But she joined a choir as well and she was just amazing.


And at home I’ve wanted to try something creative, I wanted to make home a nicer place because I’m trying to make the home a more ‘nice memories’ place and I’ve started once a month to have a Create & Chat day so people bring whatever they’re working on and we chat as the day goes on, ..It’s lovely … And it creates such a lovely environment in my home that I can look forward to. I think the idea has stemmed from having something nice to look forward to that’s all rolled out from the Positive Care Programme.


I do these models you see. I just love art. The tutor was so good. In fact the tutor who did it at the Positive Care Programme I’m on her mailing list, I’m going to do a Saturday morning course with her because of the Positive Care Programme … I think it’s opened up other doorways to me, the art for example, I’m now doing another course … and I did another one that went in an exhibition in the Central Library in Leeds. I wouldn’t have entered that if I hadn’t done the Programme.


Regular exercise

Participants were also encouraged to undertake more routine exercise. Two gentle exercise techniques introduced on the Programme were Tai Chi and Dru Yoga.

With physical pain I know that if I do those exercises they gave us, you know yoga, tai-chi, if I do that, I try that and sometimes it does help ... Some days are better than others. Like today was fantastic. I still do painkillers I still do my medication I don’t say completely off it but it’s like I’m hoping… there is a hope I feel like… I don’t know what’s going to happen to me you know. I’m just hoping that things change. So like I said I will have to grow from there and it’s another step.


Yes. So, for example, I am going to start another tai chi class soon with a lady I know quite well

and I also run a book group now. So, yes, lots of things like that.I mean, I go walking now, which I wouldn’t have attempted to do before.


I did the Dru Yoga, that was fabulous … I go every week to a class and I try to do a little bit at home every week but even then it taught me a lot about breathing and even exercises to do just when you’re sitting down. That’s quite important sometimes, you don’t always want to be standing up or lying down so that was one of my favourite workshops was the Dru Yoga.


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A number of participants reported that they were exploring or had joined similar weekly classes and several were at least walking on a daily basis and this had been very much encouraged on the Programme.

I do try and get out every day even if I’m just walking I tend to walk…they did say you should try to exercise, it does help even if you’re just going for a twenty minute walk every day, it does help

with stress and anxiety and just being outside ... I know the yoga lady said that exercise is very important, it keeps your joints moving, it helps your head and it helps your body. I do try to do something every day.


Pain reduction exercises and techniques

Some participants also mentionedcontinued use of techniques they had learned on the Programme for pain reduction.

When I go into like the calm, real calm, I could block everything out so any pain I was suffering I didn’t... it was gone. … Massively. So it gave me that break of not feeling it because I was... I don’t... I can’t explain it to you, but I was just somewhere else and it was great. It was just that relief. And that relief, oh it lasts three or four hours. So then I’d go home and I meditate nearly three or four hours a day now.


Alexander technique, that was also very good. I took away quite a lot of stuff that I found useful for my lower back problems that I still do now which I know I can use when it’s particularly bad, which helped to reduce a lot of my symptoms.


Health service navigation

Health service navigation was not an aspect explicitly ‘taught’ on the PCP, as it is on other SMPs such as the EPP, however, aspects of the course included group workshops on communication skills for a wide range of relationships and covered communication with health professionals. However, there were signs that participants had begun to improve their capacity to access the services they needed from their primary healthcare providers. The wife and husband (carer) who were interviewed on the Programme had gone on to ask for counselling support after struggling for years to deal with their problems between themselves.

… And it’s made me go out and seek some help, ‘cause I now go to the hospice, Wakefield hospice on a Wednesday ... which I didn’t realise it was a drop in centre before, it wasn’t offered to me while I was going through my cancer treatment … And . to go out and ask for help, that’s what we found from the Positive Care Programme, don’t try and take it all on yourself …so I phoned up, got the confidence to phone up and I’ve been going up there to the hospice and they have an art class there, so I’m enjoying doing the art class.

[Female, 54, Post cancer, lymphedema, Fibromyalgia

The following quote is an example of how one participant was empowered to challenge their GP (appropriately according to NICE CG88 guidance on low back pain14) and take more control of their healthcare decisions, due to increased assertiveness and improving communication skills attributed to their learning via the PCP.

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I think I’m more … My GPs attitude when you go in is, ‘What can I do for you today?’ and I’ve certainly learned now what to say to her in no uncertain terms. And when I go to the hospital it’s the same scenario. For example, they will be treating me for, I am having spinal epidurals for my lower back pain, but I’ve now said, ‘Look, you know, I don’t want to keep on having these, I need to know what is wrong’. So I actually insisted on having an MRI scan, which I’ve just had. It’s learning that skill of formulating in your mind what it is that you need and being able to express that to the medical profession without feeling, “Oh dear, they know best”.


For instance if you’ve put value on massage then it’s important for you to have massage if you value it and it helps you. If you know that you suffer from tension and it gets to certain parts of your body then it’s valuable to it. But when speaking to other people in social groups who think massages are a waste of money then having the confidence in yourself that it’s not a waste of money for you.


This participant had also discussed reducing her pain medication with their GP and had managed to cut down her usual intake of painkillers and give herself permission to take an extra dose when needed.

Like with this medication, I’m not doing anything my doctors don’t know about, but I’m cutting down. Actually I think I’m more open to taking more when I need it. That sounds silly in a way. But if I’d made up my mind to only take my painkillers in a morning and an evening rather than every four hours, since I’ve been on the Positive Care Programme I’ve thought I’ve needed an extra dose say in a mid-morning or mid-afternoon. It’s like I’m giving myself permission to do it …


The PCP also gave participants an ‘expanded map’ in which to navigate i.e. a wider set of health care services, exercises and education.

Right at the end we had a big get-together and PCP brought in lots of people from different organisations, volunteering organisations, other agencies … Touchstone and other services out there like Action for Pain in Leeds, who I am now a member of and go to every other month … I know this is hearsay now and not my experience – but they were saying, “Well, it seems a bit abrupt – it’s just the end”. But I felt it was handled very well because, you know, everybody got together, there was almost like a debriefing at the end about experiences and how everybody felt and where the next steps on the next stepping stones, where we could go from now … but I think some people found it quite difficult just, “Right, this is it, you’re on your own”, sort of thing.


At the end, one of the last sessions they did was give us the time and people to talk to and leaflets they handed out of where we could go from there which I thought was very useful. You’d had this level of amazing support for six months and all of a sudden you were out on your own again which can be quite daunting and scary. It was the fact that they had people talking about what was available and on offer; they gave us a list of the people that had been working with, what they did, what their contact numbers were; what other stuff was available. Most of it was Leeds based but some of it covered Wakefield as well. They asked us to bring in anything we knew about which obviously expanded what they had and I thought that was very helpful. The cognitive healing group came out of that, finding out about the woman’s health has come out from that but I’ve not accessed all the things that I looked at, it’s still there in the file, it’s picking the ones that went with all the stuff I was trying to do. But I think that’s very, very important. It’s great that you have a Programme but if you don’t offer any support at the end of that Programme in some ways it can be more detrimental if it’s been a very good Programme that people have got involved with that they

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suddenly feel duped, at a loss, here they make as best they could certain there was other stuff for us to go to be able to do it ourselves but that’s part of learning.


Many participants had gone on to access other types of similar activities that were low cost or free due to limited finances. A few had paid out of pocket for continued treatments.

I have a massage that I have every week that I find very beneficial which I wouldn’t have done with the Positive Care Programme … that helps me physically and mentally. When I was in there a couple of weeks ago they had some Northern College leaflets ... and I’ve applied for and been accepted to a history course.. So the Positive Care Programme took me to the massage centre, they had a brochure so now I’m going to do a history course. So really the Positive Care Programme has … my life’s opened out now I’ve got more things going on.


The Alexander technique that was brilliant and I followed that up with another lady and she offered some Alexander technique classes and that was very invaluable as well.


Three people had taken up healing since finishing the Programme as a low-cost intervention, two of them had not experienced it on the Programme but had become aware of it through the PCP.

I didn’t go for healing because that wasn’t one that I thought, as a treatment goes, it’s not one I relate to that much but I’ve had it since and I used to go to one in Wakefield and that came out of the Positive Care Programme and actually I found it more beneficial than I thought and it’s something I would never have touched in a million years if it hadn’t been for the Positive Care Programme.


I just thought I’d try it but in the end I actually go to healing now through that…it’s just separate [from the PCP] … I found that very helpful ... some ... are the same but there’s other healers there as well. But going in there it’s the same really as the other healing on the Positive Care Programme.


I didn’t do the healing but I am going to a healing class up Headingley somewhere, it’s one of the ladies from the Positive Care Programme that’s about three or four pounds a week. I’m going to go and do that to see if it will help me with my pain to see if I can take less pain relief. I can only go and give it a try and see what I come back with.


As the latter quotes suggest, participants had gone on to access a wide range of other services, many of which were signposted by the PCP. However in almost every case participants expressed an interest in receiving at least one or two of the complementary therapies on the Programme, but were restricted by finances. This group, i.e. people with long-term conditions, are often extremely resource limited, given the fact that the majority had lost their jobs due to their ill health. The following participants’ comments reflect those of many others.

I mean, the therapy that I felt helped me like the acupuncture, the tai chi, the yoga, I really loved doing the yoga actually and I just can’t afford to go to the sessions now because they’re quite expensive, because obviously I’m not on that course, so I’d have to go to a private class …

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because I can’t say I’m going to have £5 every week to give out to something, you know, like that …Because I need to get there and get back as well, so it’s my petrol. It all, sort of, adds up.


Challenges to sustained self-management

Quite a number of the participants lamented the end of the Programme in relation to having the regularity of somewhere to practise the techniques they had learned. A part of this for some people is that it did give them somewhere to go on a regular basis and to be able to interact with positive and ‘happy’ people, but for most it was for a combination of reasons, including the beneficial outcomes of therapeutic treatments. This was much more apparent in the ‘recent completer’ interview sample.

I think because you’ve got somewhere to go once a week …You knew you could meet somebody and get to know them individually over the weeks that you go but then all of a sudden it’s over and done and you can’t go back again, but why not? Even though it’s Lottery funded, I’ve got a trapped nerve in my shoulder, I had a lot of acupuncture and it’s back again now. Whereas before I was having some acupuncture and it was releasing it, it was giving me some get up and go.


The following carer who, as described earlier in this report, had struggled but managed to incorporate some of the concepts on the PCP due to her Christian beliefs but could not engage with some activities that evolved from Eastern spiritual practices e.g. Buddhism and meditation, despite that they were delivered in a non-secular way. Whilst she would like to have continued to practise Yoga, her beliefs were preventing her from doing so.

I still struggle with it a bit. I really want to go to yoga, but it is a problem for me, yeah. The uneasiness is about the fact that most of it is based on Eastern mysticism and Eastern… you know, Buddhism and that kind of thing and obviously Christianity is quite exclusive and we won’t have anything to do with any of that. So I personally don’t have a problem with it, on a personal level, but I have a problem because I’ve been indoctrinated to believe that way. So I find it difficult to… in case I’m doing something wrong, do you know what I mean?


Some of the ‘recent completers’ had been able to take on board some of the techniques but were struggling to continue without the discipline of the weekly sessions and had soon forgotten some of the techniques.

Like now … you sort of self-massage yourself….That’s what I do all day, I try to move and try to …do self, the Programme has taught me that … to do it yourself ... Just … ways of just sitting…Like I say, I’ll sit like I am doing now,… I’ll lay down in bed properly…I try to but like I say, you just forget it don’t you… maybe I should continue doing more … it … teaches you how to get in bed, in and out of bed and all that, you pick up little things … I often do meditation at night time…I lay down and think about techniques and everything, you know what I mean and I might lay down on here now especially, I’ve got … I’ve been down on here and watching telly a couple of times and what not … but it’s … I should be able to carry it on because I sort of noticed last few days I’ve been not sort of myself like … that’s probably what it is, my head, it’s nowt to do with me body.


Participants had generally kept the written materials that were handed out throughout the Programme but many felt they would benefit from more sustained and regular practice.

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The Alexander technique, the trying to get to sleep, calm your mind down, positive thinking on yourself … the one where you’re having a bad day, just positive thoughts and … I think I’m a calmer person since going to it. I were a lot, I had a lot more problems before I went to it, I do feel as though it’s helped me ... but there again, you hadn’t long enough to get into that one…I think I did 3 of that, it was quite complex were that one, so I felt that was quite a bigger subject, it wasn’t easy to take all in...and also they give you a little sheet to read from … it is helpful for me because I am bad with me movements, so learning how to get from floor positions, push me with me hands, learning how to get from the floor position, how to get onto me, and get myself up.


Some participants had, since the Programme ended, had to deal with quite difficult situations and, given the long-term nature of their condition, continued to face the challenges of living with often complex symptoms and restricted physical ability. The following participant had experienced family challenges that were not helping. However it had giving him some insights and he was keeping up with regular meditation practice.

Meditation … It’s not been every day, but I try to do that yes. It is beneficial … both [in terms of relaxation and general wellbeing] … I suppose the crux of the matter is can you actually keep going [achieving relaxation] once you finished the course, but with the best will in the world the answer’s no but it did give you some insight … and also helping one to detach from certain situations, which can be helpful … unfortunately one of the kids has become a teenager overnight … and so actually that’s significantly become more a challenging situation to deal with, so that’s been a variable that’s totally changed, so I am actually struggling more, but it’s not because of the Positive Care Programme wasn’t any good, it’s more my specific situation.


Yes, I still struggle with looking after myself, well more in some ways, because I’m on my own now. So, sort of, finding ways for me to work within what I actually can do … But, I mean, even then I still push myself too far and I know I do. So I still do have the odd day, like I say, where I… If I can get out of bed and into the living room then that’s good, you know, that’s not… I’m not saying it’s not a good thing but … every day since the group finished I said, ‘I will sit down and right a proper thing out for every day’ and I’ve still not done it, but I do need to do it. Because it’s all right if you are going to someone else and they say, Right, this is what we’re doing today, but if you’re at home, on your own, it’s ‘I will do, I will get round to it sometime’… [so] rather than, like, a couple of months [of the PCP]… sort of, a permanent on-going thing… Because I think that was the bit that I would have liked, you know, to be going and I would know that on this day I’m going to go and do this … And I know that’s probably never going to happen.


The idea of having an on-going rolling Programme for those participants with very long-term health problems was also mirrored by the following participant.

No definitely wasn’t long enough … I would have kept doing it if I could have kept going there … just to talk to people and meet people and do something every week … If I could have gone and got some acupuncture, one session or whatever it were. Because between now and September ... and me back’s been killing me …I think it should be one of the suggestions if it’s possible … it should be more than open house rather than just signing up for it like you sign up for a hire purchase… if you feel that you need to come and join in any of them groups, not to be part of the whole course … Even if you pay a small amount, a token amount people like if they’re on benefits or having hard times you know. Just to keep sort of in touch and give them something to do, let them get access to these facilities … something that’s a few pound I suppose, which could be affordable to most people that, but I haven’t been on benefits. I get a bit of pension from work … But it won’t last forever

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… And just to say to me after 6 months now you should be okay and go out in the big wide world and after everything that happens and it will be okay it’s just that …And I’ve tried to do it,I’ve tried to do little things … I’m one of these people that need a kick up the bum … I think a lot of it does stem from the fact that I’ve never really got the hang of it so … I’m not suddenly gonna get it now am I when it was missing all them years you know … for some people they may need to do that, for a hell of a long time until they can get back into normal life.

But that facility should be there for them people, help them get back into work, and maybe help them with references and how do they gather things and information, how do they collect their, to help them back you know. ‘Cos after a while you’re brain just goes, you just get on a one track horse and you can’t be bothered. You get into a routine, and it’s a wrong routine … you don’t want to do ‘owt so you need somebody to help you jump start you and to get you back into kind of a normal life.

I believe I probably would have come out me shell more and more confidence and start looking for work and thinking I was somebody again because that’s the one thing I think that they could achieve, make you feel like you were somebody, everybody were an individual … So I don’t have anything now I could be going back there and I could be getting myself. Maybe the next session may have done the trick for me I … feel like I’m part through, like taking part of an exam and not finishing it or I can’t really explain it. I don’t know if I’m making any sense if I’m honest.


Summary

Overall there were many examples of how participants had managed to sustain the reported outcomes in relation to the core aim of the Programme: i.e. increased self-care and self-management. This aspect is where the PCP group exercise and workshops seemed to have had a greater role to play than the immediate benefits of the hands-on one-to-one therapeutic interventions. Each participant had taken at least a couple of techniques away from the PCP that they could use in their daily lives. Visualisation, meditation and relaxation techniques were being used on a regular basis by a good proportion of participants, even one year later. These techniques were particularly useful for those people with anxiety and depression. Almost all interviewed participants were engaged in some form of regular daily exercise, even if this was just taking a walk.

Many participants had taken up new activities and several in particular were now engaged in regular artistic activities. For those participants who could afford to pay privately, they had gone on to continue treatments that they had found beneficial to them on the PCP e.g. massage and acupuncture. A number had taken up low-cost interventions such as healing or group exercise classes. Although none of the participants had reported that they were able to re-enter the job market, several participants had already begun or offered to be a volunteer on subsequent PCPs. Some participants were only beginning to open up to new possibilities of having a ‘normal’ life’ and were taking small steps towards increasing their ‘activation’. However, many had started to more fully engage with life and were participating in a range of self-sustaining activities.

I am going to start another Tai Chi class soon with a lady I know quite well and I also run a book group now. So, yes, lots of things like that … I mean, I’ve just been to Australia, believe it or not, I went for my 70th birthday and that was quite a big thing to do on my own.

[Female, 68 (at the time of registering on the PCP), Sjögren's syndrome, celiac disease, fatigue. LBP]

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7. Postscript reflections

Strengths and limitations of the research

The aim of this studywas to gain an understanding of the perceived quality and benefits of the Positive Care Programme by participants who attended three of five Big Lottery Funded Programmes. As an interview-based, qualitative study,the findings can only reflect the views and experiences of those participants. This type of qualitative research, whilst not able to ‘prove’ any effect or enable any conclusions to be drawn in terms of ‘efficacy’, is able to identify the range of perceived benefits of those participants who were interviewed.This type of research, however, provides a framework on which to base future research that would enable such conclusions to be drawn.

Research potential

A mixed methodology large-scale trial would be the logical conclusion to provide more rigorous evidence and would generate data to enable conclusions to be drawn about the potential widersocial and economic benefits including Social Return on Investment. This type of research would also enable a more in-depth exploration of some of the core findings e.g. to examine how participants engage and sustain their involvement in the Programme in the context of a ‘stages of change’ model.

Service development potential

As described in the main body of this report the design of the PCP and the attitude and approach taken by the staff running the Programme ensured that it was responsive and flexible in terms of adapting the service to suit participants’ needs. There were clear examples where participant feedback through the feedback forms completed at the end of each 5/6 week block and at the end of the Programme using the ‘You and your project' questionnaire.

Some of the participant feedback identified areas for developing the service, particularly in terms of continuing professional development (CPD) for the team delivering the Programme. It was clear from some of the interviews that Touchstone had developed the PCP team over the five Programmes funded by the BLF. Whilst no major issues were flagged by participants, there were cases where staff members would benefit from further training.

There are wide variations in professional standards within the complementary and alternative therapy sector, and thus sharing the expertise of some disciplines across the team, particularly those of the acupuncturists, would be of great benefit to the Programme.315An example of this is the detailed medical records taken and followed up on at weekly sessions. Touchstone have already indicated that this is one key area for development for future Programmes. Whilst this study is not a service development project, interviewed participants have provided information that has enabled Health Academix to follow up this report with recommendations to further develop the Programme.

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Widening access to the PCP

Almost all participants had recommended the programme to other people who had then gone on to attend subsequent PCPs. Many commented that greater access to the PCP (especially via their GPs) should be provided to other people with long-term conditions, in the context of describing their experienced of the Programme.

Positive Care Programme needs to get going for everybody and they need to get more GPs involved with the programme because I think it would be a heck of a lot easier than just giving you a load of pills. [the co-ordinator] needs a bloody medal for doing it but there needs to be more GPs involved so that it can get the funding that it needs to carry on. GPs need to be more updated about what the Positive Care Programme is and how it can change a person’s life without giving them a load of medication. Also work with the GPs on how better it is for that particular patient … It’s one thing that I would recommend to anybody… I’m giving something back to Positive Care Programme and volunteering so it’s like a double whammy … Seeing everybody coming out of there it’s like I’ve done this and now I can give back.


I just think that it’s something that I personally if I could I would promote it in the NHS as a recommendation. I would promote it nationally and have Positive Care Programme centres up and down the country … these kind of centres, need to be more nationally available, more promoted. I even think even charging a small fee is not out of the question because I think a subsidised, even if there’s a subsidy and they’re charging a small fee to make sure that it runs…


At the moment it’s always the rolling programme with funding. So you could recruit a number of people to do another programme but all of a sudden the funding’s not there. I just think it’s the … you’re not going to see the benefit of it immediately but in years to come people’s lives will be enriched from it but you need to work at it.


I guess, coming from a healthcare background, I find it hard to believe that something like the Positive Care Programme is having such difficulties with finding funding. I think that given the costs involved of placing people on the programme, it’s cheaper than a course of antidepressants, you know, and yet it gives so much to help people. I know there’s lots of talking therapies out there now, which are still hard to get even with some of the initiatives that are out there like IAPT programme and things like that, and if there were more things like the Positive Care Programme out there, not necessarily for people with long-term health problems, but people who have maybe gone off work because of low mood or they have had episodes of bullying and just need to get a bit of self-confidence back in themselves. I think it works for lots of people on so many different levels and I think, you know, it should be available readily at every GP practice to allow people to go because I think in a short time you can pick up so many life skills, I just think it should be more readily available really. It’s brilliant.


I think, obviously, I mean, I have given them and I gave my GP the information about the Positive Care Programme and I’ve told them that and I think, yes, there should be more alternative therapies available through the National Health Service. I know they say some GPs will get a budget; it’s very few and far between people ever get it, right. … for most people it is actually having the confidence to know who to go to and what they need and in a lot of cases it’s trial and error really. But, yes, it is there dismissiveness of “Well, that’s it, you’ve got it, you’ll have to live with it” and that really is frustrating and a lot of people I know find it frustrating as well.


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8. References

1. Wallace L M, et al. (2012) ‘Co-creating Health: Evaluation of first phase. An independent evaluation of the Health Foundation’s Co-creating Health improvement programme’. Health Foundation. www.health.org.uk/public/cms/75/76/313/3404/CCH%201%20evaluation%20report.pdf?realName=ZqBppJ.pdf

2. Mintel 2009, 2010 and 2011.

3. Wilkinson, J, Peters D, Donaldson J. Nadin A, Patel L. (2004) Clinical Governance for Complementary and Alternative Medicines in Primary Care. Report to the Department of Health and King’s Fund.

4. Thomas KJ, Nicholl J, Coleman P. Use and expenditure on complementary medicine in England - a population-based survey. Complementary Therapies in Medicine 2001; 9:1-11.

5. De Silva D. (2011) Helping people help themselves: A review of the evidence considering whether it is worthwhile to support self-management. Health Foundation.

6. Prochaska JO, DiClemente CC (1984). The transtheoretical approach: crossing traditional boundaries of therapy. Homewood, Ill:Dow Jones-Irwin.

7. Ritchie J, Spencer E. (1994) ‘Qualitative data analysis for applied policy research’. In, Bryman, A. and Burgess, R.G. (eds.) Analyzing Qualitative Data. London: Routledge

8. Patients Like Me http://www.patientslikeme.com

9. Prochaska JO, DiClemente CC (1984). The transtheoretical approach: crossing traditional boundaries of therapy. Homewood, Ill:Dow-Jones-Irwin.

10. Kuyken. W. et al. (2010). ‘How does mindfulness-based cognitive therapy work?’ Behaviour Research and Therapy 48 (2010) 1105e1112. Elsevier.’

11. Kuyken. W. et al. (2008). ‘Mindfulness-Based Cognitive Therapy to Prevent Relapse in Recurrent Depression. Journal of Consulting and Clinical Psychology. Vol. 76, No. 6, 966–978

12. Shapiro. S. L. et al. (2007). ‘Teaching Self-Care to Caregivers: Effects of Mindfulness-Based Stress Reduction on the Mental Health of Therapists in Training’. Training and Education in Professional Psychology. 2007, Vol. 1, No. 2, 105–115

13. Vermander. M. et al. (2011) ‘Spirituality in general practice: a qualitative evidence synthesis’. British Journal of General Practice. Nov;61(592):e749-60.

14. NICE. (2009). ‘Low back pain: Early management of persistent non-specific low back pain’. National Institute for Health and Clinical Excellence.http://www.nice.org.uk/nicemedia/live/11887/44343/44343.pdf

15. Stone, J. Respecting Professional Boundaries. What CAM practitioners need to know. Complementary Therapies in Clinical Practice. (2008) 14, 2–7. Elsevier.

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http://www.nice.org.uk/nicemedia/live/11887/44343/44343.pdf

http://www.patientslikeme.com/

http://www.health.org.uk/public/cms/75/76/313/3404/CCH%201%20evaluation%20report.pdf?realName=ZqBppJ.pdf

http://www.health.org.uk/public/cms/75/76/313/3404/CCH%201%20evaluation%20report.pdf?realName=ZqBppJ.pdf


9. Appendices

Appendix 1: Data collected and analysed by Touchstone

Positive Care Programme (PCP) September 2010 - July 2012

About the evaluation measuresWe asked participants to complete health-related quality of life questionnaires when they started the programme, and again at the end of their programme, to record change. The questionnaires used were:

MYCAW (Measure Yourself Concerns and Wellbeing) is an individualised outcome tool which gives the participant a voice in assessing the impact of their care.

The EUROQOL results are based around how the participant describes their levels of mobility, self-care, performing usual activities, pain/discomfort and Anxiety/depression followed by a general wellbeing measure. The higher the score the better the participant measured their overall general health.

In addition we used a questionnaire (You and Your Project), specifically designed to ask participants about the components of the programme, so that we could identify which parts they found most and least beneficial.

MYCAW resultsThe MYCAW results represent improvements in the concerns which participants stated were the ones which they would most like to have help.

The best possible individual mean score = 0 and the worst possible individual mean score = 6. Taking all participants, irrespective of attendance (this gives a very conservative result):

Mean baseline score = 4.9Mean follow up score = 3.3

Thus overall, mean scores improved to a highly statistically significant level at the end of the first year and the largest improvement was in the group which attended fully (a mean score of 3). Those who attended between 4 and 11 or 10 improved to a lesser extent (a mean score of 3.5) and those who only attended 1-3 times had scores which were similar to those of when they enrolled (a mean score of 4).

Mean change in MYCAW score, according to number of PCP sessions attended

Attended 0-3 4-11 12+ Over allPCP 1 and 2 (sample size 79)

Starting score 4.8 4.8 4.6 4.7End score 4.1 4.0 3.1 3.4Change -0.7 -0.8 -1.5 -1.3

Attended 0-3 4-9 10+ Over all

PCP 3 (sample size 43)


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EUROQOL results.

The EUROQOL results are based around how the participant describes their levels of mobility, self-care, performing usual activities, pain/discomfort and Anxiety/depression followed by a general wellbeing measure. The higher the score the better the participant measured their overall general health.

Mean change in EUROQOL score, according to number of PCP sessions attended

Attended 0-3 4-11 12+ Over allPCP 1 and 2 (sample size 79)

Starting score 14.6 15.0 14.8 14.5End score 15.7 15.2 17.6 15.1Change +1.1 +0.2 +2.8 +0.6



Starting score 18.0 14.3 13.8 14.2End score 18.5 11.5 17.7 17.5Change +0.5 -2.8 +3.9 +3.3







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Conditions of the participants who showed greatest increase in Euroqol scores:

Programme Increase Condition Sessions attended

PCP 1&25.5 Fibromyalgia 86 Depression and anxiety 129 Fibromyalgia 125.5 Condition not disclosed 149 Arthritis and anxiety 158 Depression and anxiety 165.5 Depression, anxiety and panic attacks 189 Depression, anxiety and panic attacks 1910.1 Arthritis and anxiety ?

PCP 3 7 Depression and anxiety 107.6 Depression and anxiety 127 Pain, depression and anxiety 1511 Condition not disclosed 167 M.E. and depression 1613 Condition not disclosed 166 Fibromyalgia and scleroderma 1710.5 Pain, depression and anxiety 189.5 Pain and bipolar 198.6 Depression and anxiety 19

PCP 4 11.7 Shingles and depression 410 Bipolar 66.5 Chronic Fatigue Syndrome 66 Schizophrenia 96 Anxiety and lack of sleep 116.3 Constant pain, depression and anxiety 116 Thyroid cancer 138 Osteoarthritis, depression, anxiety, panic

attacks14

6.5 Depression and bulimia 156.5 Depression 169 Chronic pain syndrome, reflex

sympathetic dystrophy and insomnia20

PCP 5 6.5 Fibromyalgia 37 Pain 106.5 Fibromyalgia, osteoarthritis and

depression11

8 M.E., depression and sleep apnea 115.5 Depression, fibroids and migraines 1310 Depression 149.5 Bipolar 156 Lower back pain and depression 176 Arthritis, high blood pressure, diabetes,

depression18

7.9 Depression, anxiety and panic attacks 18

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You and your project questionnaire

151 participants completed the You and Your project questionnaire. Below are the aggregate results of how the participants viewed the programme.

The Positive Care Programme has helped me to…

improve my physical well-being = 91.5% improve my mental well-being = 91% understand how my lifestyle affects my health = 94% make positive changes to my lifestyle to improve my health = 89% understand what causes stress in my life = 86% cope better with stress = 85% do more of what I want to do = 69% socialise more with other people = 66% take more responsibility for my health = 89% improve my self-confidence = 80% visit GP less often = 36% were able to reduce medication = 26%

Number of visits to GP

Participants were asked, how often they now needed to visit their GP and was this less often/more often/ the same as before the started the Positive Care Programme?

36.3% said that they visited less often, 56.3% the same, 2.5% more often and 5% unclear or stated not applicable.

Reduction in medicationThis was not encouraged in the programme but participants advised that they had been able to reduce forms of medication including:

Painkillers Antidepressants Sleeping tablets Anti-inflammatory medication

Participants were asked, “Have you been able to reduce the amount of medication which you take?”

25.5% said Yes70.2% said No

ConclusionThe PCP has been running for 8 years and has consistently demonstrated that fully attending the course benefits the participants’ wellbeing.The PCP works with some of the most vulnerable participants whose long-term conditions cannot be “fixed” and who are susceptible to experience secondary health conditions/symptoms due to having to live with their conditions. The PCP can prevent this further increase in symptoms and conditions. The PCP is a self care intervention that is applicable for all types of long term conditions.

The following pages contain participant comments taken from the questionnaires.

Feedback from the You and Your Project feedback form from participants attending the PCP 3,4 and 5

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I have so enjoyed being a part of this- it has helped me physically & emotionally. I am now much more confident about saying I have disability needs & making other people aware of these, and I’ve had positive feedback as it is easier for other people to know what my needs are.I enjoyed the flapjacks and cakes a lot. All the therapies were excellent. I made new friends. I will use the Alexandra technique at home. The people were all very friendly.PCP is a great reminder for me of the value, benefit & uplift that can be gained both by being surrounded whist there by friendly positive people (staff & participants) and therapies/ exercises/ thinking about positive ways of being & living. Only session I didn’t enjoy was laughter workshop, it seemed inappropriate & not relevant to my personal situation so I left early.Continuation of the PCP course which is so beneficial to people who need help to cope with life. I believe the course has been developed & leaded well and it is invaluable to those who need help.There is quite a lot of overlap in the workshops- some people may find this helpful but for me it was frustrating. I found some workshops a little patronising in style but maybe that’s just me. It would have helped if those giving workshops had maybe opened up about the struggles that led them to new practises. Overall this has been a wonderful experience & has helped so much with my feelings of isolation, Thank you. Its been so good to feel part of something positive again for the first time in 3 .5 years, my CBT group often leaves me feeling low but every time I’ve left PCP I’ve felt so much more positive & grateful for this wonderful opportunity. Should be longer both in hours & weeks. Would happily pay something towards attending.Been absolutely wonderful, have enjoyed every minute of it. The people that run it are marvellous, so friendly, relaxed.I think the PCP is a brilliant programme. You are able to try different therapies which otherwise would not have been affordable and find out which is most helpful to you. Got me back into taking care of myself. I came into the programme for the last 4 weeks & would like to do more.It definitely gave me focus & routine for action. It also helped/definitely improved to some extent my very low energy levels & back pain via 1 to 1 therapies, especially massage & meditation. It brought my confidence back to think & explore options to more appropriate work. I feel I may be able to manage & maintain with massage & detoxify in future.Has been brilliant, would love to complete the course as I started half way through.Just think it’s really valuable. I did find a discontinuity of people.Really helpful. Would love it to continue.Have enjoyed & have learnt a lot. Some workshops more helpful then others; enjoyed all the therapies.A positive impact on my life and well being. I got to try things I could not afford though I have often wanted to try. With a vision of what works for me and what I liked, hopefully I can incorporate it into my life now.Many Thanks- you are all brilliant. Thank you for helping me to recover! All of you have shown me such kindness & unconditional love.Authorised to leave/ take it at own pace. Really liked the flexibility. Most of all have loved the positiveness- positivity breeds positivity. Good- helps to relax, gets you out. I like all the therapists/ staff who really made it feel like a community, remembering my name & details that I’ve spoken about. I have enjoyed the individual therapies which have been of real benefit; however some of the workshops did not offer me anything new or different. Some of the workshops were not very memorable, so difficult to remember which was which- apart from Jane & Sonia. The therapies & exercises were excellent. The PCP is great, it has helped me a lot, I don’t want it to end. Totally beneficial. If up to me, everyone who needs it would have access to this course. I have benefitted greatly from the PCP & from being part of the group, also it’s reminded me of all those things that I know but had forgotten. I find the skill which I have been shown will help me. I am calmer, am sleeping better. I’ve started as a volunteer at Leeds City Varieties which I couldn’t have done a few weeks ago. This has boasted my confidence. The numbers in exercise based activities need to be kept to a good number. Fantastic Programme, gives hope.

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Started programme late, would like to continue if possible. Would like to do the programme again. Amazing programme, all positive- time for self is important. It has been a most uplifting journey, enabling me to take more control of my health & wellbeing; I have now enrolled on a spiritual healing course to train as a healer myself. The PCP is excellent but you have to put in effort yourself to achieve or at least attempt changes in your life. The Positive Care Programme has been the best thing I’ve ever done. It’s not cured me but helped me to improve & is somewhere to get out & enjoy. The Acupuncture was extremely helpful and has enabled me to go out and manage my moods better.Been brilliant. Not well known aboutI only joined the PCP 5 weeks ago but it has made a huge difference in helping me cope with things I have been struggling with for decades.The best thing about the programme is being treated as an individual, at the PCP people see beyond my scooter. Now I feel I can go into places and say, ‘look at me’. I have actually applied for a job. If that doesn’t come off I am in a position to look for another job, which would not have been a possibility before the PCP. I hope PCP can get more funding because what you do is fantastic; it has been a joy to be part of.PCP is an excellent resource and should be funded by the NHS to be more available to allI have only positive comments to make; all the therapies & exercise classes have given me help at home.The holistic approach over a significant number of weeks has been most beneficial in bringing about an improvement in my mental health. The experienced and committed practitioners have been a joy and inspiration.I think it is a brilliant programme, I am concerned how the benefit will be sustained and if I will be able to carry out self help. I was traumatised about my career, my granddad who died last year, a lengthy court battle against my employer and how they treated me. I have learnt coping strategies but still find myself anxious over life events.I have gained so much positivity; I have really enjoyed this and have put ideas into practise.I think the programme is an experience I have been privileged to experience & I would like to thank all for your help, warmth, peace & love. I would like the PCP to continue. After therapy needed no painkillers to go to sleep & slept well. Negative thoughts have now been replaced with positive thoughts.I was very down, low confidence, not speak to people, now I don’t want to miss a session, I speak to people which has built up my self confidence.Its been a rewarding experience. I am so grateful for this experience which I am sure will benefit me enormously. I would like to say ‘Thank you very much’.Thanks, it’s a very good programme & well organised. People very helpful. Some workshops wishy washy.Thoroughly helpful and enjoyable throughout. Friendly staff and great idea on all fronts. A bit for everybody.It was great.Wish I could have started sooner- enjoyed.Been a very positive experience, something to look forward to every week. Feel much more relaxed and able to cope.The Programme has been positively beneficial to me; it has given me the tools to deal with very stressful medically related problems. I can now actively change my outlook & influence the outcome of situations. My self esteem has improved and therefore my general wellbeing. I am more assertive in negative situations. I can now deal with stressful situations with confidence.Really enjoyed it, just wish I’d have had longer on it.It got me out. Would love to do a Head Massage Course. All round it was good, and meeting people was good.Helped me manage my pain and deal with it. Feel more positive, helped meeting other people with same conditions.I feel very lucky to have been able to participate in this programme. It has given me something to look forward to every week and it does make me feel positive when I’ve finished the session.Altogether wonderful- lower scores on workshops simply reflect larger groups.

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Brilliant, inspiring, massively helpful, I hope it continues to receive funding. Enjoyed everything, I am now sleeping really well.Really helped with my dissociation.Absolutely brilliant, would like more.I can honestly say this programme has helped me so much I can’t even put into words. It’s sad that it has to end. Many many Thanks.The programme has helped me think positively and has given me skills in looking after my body- all in all a great help to my wellbeing.A great deal of thought has been put into the programme & gives people a taste of diverse therapies.I consider myself most privileged to have been able to attend such an inspirational programme and have enjoyed it immensely. Both the group & individual therapies have been excellent. The workshop courses have been interesting also and with such a vast & diverse amount of content, there is bound to be something that does not suit everyone. The reason there is not ‘strongly agrees’ against my workshops is that I have visited much of this before via input from the chronic pain team & a group called ‘action on pain’, but still it has been good to go over again. It was very good and I’d like to come again, nice people, it was best. I found the programme very helpful and interesting, some of the programme helped me more than others, which is to be expected. Positive care also meant I had something to get up and go to. Nice to meet others as you can get isolated. P.C.P has been a great overall experience; where I feel I have gained many new skills to enable me live a more positive life. I was allowed to work on a one to one basis with the programme due to my anxiety with groups of people. I did in fact try to work with a group in the meditation session, but found it too difficult at this time. Attending the PCP was the first involvement with people have had in years, I am pleased I did it as it’s helped me to make a start in having contact with people, and opening doors for me for the near future. Enabling me to move on with my life. Through being at P.CP I have being able to go back to work, I have been off work for 17 months. Thank you very much. This is an excellent programme. All the people involved e.g. course leaders, volunteers; therapists etc have been very friendly and helpful. Good help for people like me. Please carry on!!I think it was really good and helped a lot.I have had to miss many sessions when I have been too unwell to come, but this experience has been wonderful. Wish it could continue. I have met other people with invisible conditions! I am not alone.The whole programme has been a wonderful experience. It has made me re-assess a few things in my life.I think what you are doing here on this programme is amazing. What an amazing opportunity to feed your soul with positive things! It is such a kind and thoughtful programme, everyone involved is kind, generous and helpful. They want you to get better! I have loved it. THANK-YOU xxI have learnt so much from this programme; it has been excellent all the way through. Thank you.Thank you.This programme provided a link between hospital and hope. Prior to coming I was lost in my disability and it dominated my life – encasing it in failure. Now I can control the uncontrollable - fatigue and pain. I will have pain forever – so what!This is the most amazing programme I have come across. Thanks so much.Taught me coping techniques. Is nice to meet other people and understand we all have problems. Has made me think more about taking care of my body.You are all so amazing. It comes with one of life’s crucial lessons, that we need each other. Great atmosphere that is natural, not forced. I find it hard to stick with things and be around people, not so with the PCP.Clearer definition of each therapy in introduction: Start – aim. Beginning – consent.End – result.Maybe condensing the course more, 2 to 3 times a week for about a month instead of over a five month period.I would like to say a huge thank you to everyone who has given their time to give me back the reason I’ve not been in a long time, they have given me a new lease of life and I can now look forward feeling full of life and energy.I have thoroughly enjoyed the programme. Wish it could have lasted longer.

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Superb programme. Wonderful opportunity to learn new things, relax, meet new people and learn from them. The breadth of the programme means lots of opportunities to try new ‘things’ – discover ideas and practices that help (and sometimes learn patience, ‘sticking-power’ and empathy through attending less ‘my choice’ activities). Thank you so much to everyone who enabled me to attend and benefit so much from this wonderful experience. This should be provided by the NHS.It has been very informative. The thing is to remember and use. But if I do a little every day it should become second nature apparently. Good advice.Excellent programme.Overall I have had great relief and pleasure from most of my stress anxiety depression and have gained a little more confidence and it has given me a reason to come out and socialise.I have learnt so much during my time at PCP. I have learnt so much valuable tools, which I now use on a daily basis, which help me when my mood is low and also how to cope with the other side of my illness anxiety and agitation. I know that PCP has taught me to look at situations in a different way, a more positive useful way. I am sure all the things I have learnt will stop me from being in the not so nice place that I was in when I originally joined the PCP. Thank you.

38. Please comment if there any ways you can suggest to help us improve the Positive Care Programme?

Only to say that the extra sessions hoped for by those starting late into the programme will help to enable a full experience of the programme & gain the full benefit.Having longer breaks between sessions, would give time to come around after individual therapies. Holding copies of workshop notes centrally for if people miss classes.Could try aromatherapy or hot stones massage?A follow up programme would be brilliant. Make it national. I lived in Brighton & there was so little support available that my mental health spiralled sadly down because of isolation. Add counselling to the programme.No improvement needed. Anyone with long term illness would benefit greatly from this programme. People coming into exercise class late miss the warm up. CD’S/ Videos to take away can be helpful.Face book/ Network of like minded people to share experiences & peer support can be helpful in future.Timetable improved to reduce clash can increase opportunity to experience more therapies.Continue it. Venue hard to find. Keep it going.To get chance to try everything- I think because of big numbers on week four, I repeated workshops because there was nothing left. I would have liked more opportunity to meet service users & find out about their health issues & how they deal with them. (I don’t push myself forward to meet people myself). If there is anyway to increase the availability of the workshop leader for ‘giving voice’, I believe that would improve the programme. Is perfect as it is. Get onto Facebook! Keep it going so people can keep experiencing such a good experience. Would like to come again to help gain more knowledge. Want to experience more. Perhaps time the session’s better- so there is some space in between. Coffee please at refreshment table. Cookery course. Jamie Oliver’s ministry of food (found in Leeds market) may be able to offer help. I wish I could come on this programme again. Ask people what they might to discuss in classes, I think some people haven’t enjoyed them. I didn’t get chance to try everything and had to repeat some things twice. Should be made available to all.Everybody tell their G.P.Keep it going! It’s a valuable, positive resource which is so much better than any NHS services I have encountered. You are accepted for who you are and not what people expect you to be.Make surgeries aware of PCP.Some session’s unhelpful, need to ensure speakers know what PCP is, but others very good.Sometimes a little preamble about a workshop would prepare one for the session e.g. giving voice.

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Just keep doing what you are doing.Having a bit more information on what the classes-sessions are about.Is this possible- a 15 minute break between therapies/workshops.Improve some of the workshops.Iced water freely available.Make it last longer.A set break time, as there is not always time between classes to have a drink.More advertising- was unaware of PCP until shortly before it started.I wish I had come to more sessions.Difficult to think of improvements, really hope funding becomes available for its continuance. Just keep on as you are.Really good.I just think it’s a shame more people do not know its available, I personally have found it has had a very beneficial effect on me, sorry to be finishing. I probably would have had a go with the art group, if small. But would prefer in a separate section and not in the main area. First few weeks overwhelmed by other people’s problems and had to try and not be burdened by other people’s problems. Overall I have had great relief and pleasure from most of my stress, anxiety and depression and have gained a little more confidence and it has given me a reason to go out and socialise. I feel there should be a 5- 10 minute gap from one session to another. Just encase the need you need to use the loo or have a drink etc. The programme is very good as it is.Maybe allow clients to maybe continue in the sessions if they are really beneficial. I know you have to rotate people so that we all have the chance to sample all the sessions. But maybe 10 sessions of one thing instead of 5. Just a thought!Make it two years!!!I liked it the way it already is. 10 out of 10.No don’t change.After first set of sessions - a ‘forced’ meeting of groups so individuals can meet other clients – who can and do provide invaluable support and knowledge.Would be good to have a yoga DVD to take home and do at home.I like it the way it already is.Introduce the aim and define. The mixture of care workers and patients or students, it does not help my trust of who’s who?It’s good enough as it is.Alexandra Technique should be for at least 45 mins to an hour as it’s not long enough and maybe make the blocks 6 weeks instead of 5.Although it is good to have informal, anecdotal talks, sometimes there needs to be more care taken that the ‘substance’ doesn’t get lost amongst the ‘chat’. Exercise classes should be mainly exercise. Difficult to do, but programmes which leave no ‘space’ between sessions mean late starts for the next session and sometimes exhaustion for the participant (and probably the tutor/practioner)Take feedback more often and possibly introduce mentoring.Maybe if funding was available a small diary to fill in of what you did on the day against the therapies/workshops you attended would be of benefit as well as the sheets to remind you perhaps?Contact phone number on Thursday as when I couldn’t attend I would have liked to let PCP know, so the therapists would be aware I wasn’t there.This could be a positive programme in schools as well.

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Appendix 2: Topic guide for interviews for cohort 2 participants (PCP 3)

Interviews covered the following six areas;

1. Exploring expectations of PCPa. How they heard about PCPb. What they thought about PCP at that pointc. Why they decided to attendd. What they hoped to get from attending

2. Exploring participant (care recipient’s) health condition and its impact prior to coming to PCP. This will be explored in terms of its impact on daily living including

a. social isolation b. depression/anxiety

3. Exploring the experience of PCP participation (positive and negative)a. Early impressionsb. What they liked most and what they liked lessc. Experience of different interventionsd. Therapists/workshop leaderse. Dignity and respectf. Communication g. Perceptions of quality and safety h. Location and venuei. Duration of programme and ability to sustain participationj. Other participants/ group experiencek. Comparisons with experience of other services experienced (e.g. NHS)

4. Exploring perceived value of PCP participationa. How they felt at the end of the programmeb. Any impact on condition(s)

i. Coping with condition(s)ii. symptoms

c. Changes in emotional functioningd. Changes in social functioninge. Any other ways PCP had an impact

5. Exploring the mechanisms of effect (how any benefits might have been achieved). What was it that made any changes described possible?

a. Sense of support/careb. Sense of shared problemsc. Changes in behaviour/illness management (self-care practices)d. New understanding of self and/or conditione. Increased confidence in self and ability to cope

6. Exploring the ‘legacy’ of PCP participationa. Explore any self-care practices in detailb. Expectations of sustained impact and benefitsc. Anticipated challenges

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Appendix 3: Interview questions and prompts

The following are examples of the sort of questions that were asked during the interviews.

Opening questionsCan you tell me about how you first heard about PCP?What did you think about the idea of going along?What (else) did you think you might get out of going?

Background questionsCan you tell me a little bit more about the health problems you were dealing with when you started the programme?To get a sense of the impact of their condition, not a detailed medical history.What sort of impact do you think this was having on your life at that time?

Carer questionsCan you tell me a little bit more about the health problems which the person you care for was dealing with at that time?How long have you been caring for x?What does being a carer mean for you day to day?

PCP experienceWhat were your first impressions of PCP?What things did you choose to do at PCP?Can you say a bit more about why you chose that?How confident did you feel about making those choices? What did you enjoy about going to PCP sessions?What made that particularly good for you?Were there things you did not enjoy or found difficult about PCP?Was the PCP what you expected it to be?How would you say PCP compared with other services you’ve experienced in the past (e.g. through your GP, local medical centre or hospital)?

ImpactDo you think going along to PCP has helped you (picking up on what they enjoyed if appropriate).Explore outcomes of value and then explore mechanisms e.g.What do you think it was about PCP that helped you to………?

LegacyHow do you fell about it coming to an end?Explore any self-care practices in detailDo you think you will be able to keep going with ………………? (exploringany changes described)

Ending questionsThat’s great thanks – is there anything else you would like to say about PCP?Do you have any questions you would like to ask me?Would you like us to send you a summary of the findings of the report (Will PCP be able to produce 24 copies for those who participated?).

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Appendix 4: Legacy explored in more detail for cohort 1 (PCP 2 & 3)

The topic guide for the first cohort of those completing PCP last year (PCP 1&2) covered the same topic areas (1-5) as the second cohort in less detail, and focused more in depth on what had happened in the 12 months post completion, exploring in particular issues of sustainability.

Exploring the ‘legacy’ of PCP participation

a. Exploration of self-care practices in detailb. Sustained impact and benefitsc. Challenges d. Other services accessed since the programmee. Volunteering on subsequent PCPf. Recommendations to others with long-term health conditionsg. Retrospective views on the length of the project v’s longer term engagement retrospect

(i.e. 20 weeks v’s proposed 12 weeks with monthly follow ups?)

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Appendix 5: Introductory letter and information sheet sent by Touchstone

10th February 2012Dear

Research interviews for the Positive Care Programme

Touchstone is working with researchers from Health Academix to undertake an interview-based study of the Positive Care Programme.

The purpose of the research is to understand people’s experience of being part of the programme.

The researchers (Jane Wilkinson and Kate Thomas) would like to interview some participants. These interviews will last up to one hour and can be held at one of the Touchstone centres or in your own home if you prefer. The interviews will be tape recorded and treated as confidential by the researchers.

Some quotes from the interviews will appear in the final report which they will produce, however, these will be anonymous and no one will be identified by name anywhere in the report.

I you think you might be interested in helping us by being interviewed please could you complete the enclosed consent form with your contact details, and one of the researchers will contact you. Please return this in the enclosed envelope as soon as possible.

You do not need to decide to go ahead with the interview until you have spoken to either Jane or Kate. They will be happy to answer any questions you may have about the research.

Kind Regards

Hannah HoweTouchstone PCP Programme Lead

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Appendix 6: Consent form

Research Interview for the Positive Care Programme

Name ………………………………………………………………………….

Contact phone number………………………………………………

I agree to Jane Wilkinson or Kate Thomas phoning me to discuss the possibility of interviewing me about my experiences of the Positive Care Programme.

I understand that I can change my mind about being part of this research at any time.

I understand that the report from the research will not identify me by name at any point.

Please make sure you sign this form below

Signature………………………………………………………………

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Appendix 7: ‘Stages of change’

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health academix ltd final report to touchstone 20121

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