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NHS Newcastle Gateshead Clinical Commissioning Group Alliance Musculoskeletal Services: Patients’ Expectations and Outcomes April 2014

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Involve North East We are experts in innovative and practical involvement. We work with patients, communities and harder to reach groups to gain the insight needed to design the best, most responsive and cost-effective services. We have vast experience and expertise in gathering the views and opinions of patients, carers and the general public in relation to health services. For example: locating new GP surgeries services to include in new community health facilities visibility of existing health services changes to care pathways

We employ quantitative and qualitative data collection techniques including: Questionnaires – paper-based and online Participatory appraisals Drop-in events Face-to-face and telephone interviews Focus groups Informal group discussions

We also provide guidance on: how services can engage with patients, carers and the public developing patient-friendly services a patient-focused approach to delivering health services

For more information about the services we can provide please contact Kieran Conaty on 0191 226 3450 or email kieran@involve.org.uk. Visit our website at: www.Involvene.org.uk

Contents Executive Summary I-VI Section 1: Introduction 1

1.1 Involve North East 1 1.2 Context 1 1.3 The project 2

Section 2: Methodology 3 2.1 Interviews 3 2.2 Focus groups 3 2.3 Questionnaires 3 2.4 Participants 3 Section 3: Findings 5 3.1 Patient’s condition 5 3.2 Effects of the condition 6 3.3 Expectations of treatment 8 3.4 Listening to patients 9

3.5 Treatment 11 3.6 After treatment 14 3.7 Suggestions to help improve other patients’ quality of life 19 3.8 Summary 22

Section 4: Recommendations 25 4.1 Communicating with patients 25 4.2 Practical changes 27 Appendices 29

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Executive Summary

1.0 Introduction

NHS Newcastle Gateshead Clinical Commissioning Group Alliance is currently reviewing and redesigning the Musculoskeletal (MSK) care pathway to ensure that patients receive the best possible care.

The new model of service delivery will be measured in terms of the outcomes it delivers. A positive patient experience is an important outcome for all commissioned services. These outcomes will include both service measures and personal (patient-focused) measures. Understanding what really matters to patients and their families is crucial in this process and will better enable the delivery of safe, effective outcomes along with high levels of patient satisfaction.

In 2013 Involve North East carried out some consultation work exploring patients’ experiences of MSK services. Therefore, this complementary engagement activity focused on the expectations and outcomes of Newcastle–based MSK patients who have recently completed treatment.

2.0 The project

The aim of this project was to explore patients’ expectations and outcomes of the MSK service following their treatment, to inform the development of patient-focused outcome measures and the design of the future MSK service delivery model.

The key objectives of the project were to:

• Understand how patients’ conditions affected their lives before treatment • Explore patients’ expectations of the service before treatment • Gauge whether patients felt listened to when they first presented their

condition • Gauge patients’ involvement in the decision-making process about the

treatment • Understand how patients’ conditions affected their lives after treatment • Ascertain the effectiveness of information given to patients after their

treatment • Identify ways to improve the quality of life for people living with a bone or joint

condition

Anyone living in Newcastle, who had used any of the MSK services between 2012 and June 2013 and had completed treatment, were eligible to take part. One hundred and eleven patients took part via telephone interviews (102), completing an online questionnaire (six) or taking part in a focus group (three).

3.0 Findings 3.1 Pre-treatment

Patients who had had a variety of bone or joint conditions took part in the engage-ment. Their conditions restricted their daily lives in terms of mobility, pain, carrying

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out everyday activities, sleeping, exercising, taking part in hobbies and interests and being able to work. The average pain score they gave before their treatment was seven.

“It was horrendously debilitating; I had no energy, I couldn’t lift my arms”. The main expectation patients had about their treatment was to be pain-free or have reduced pain, this was followed by getting a diagnosis, having increased mo-bility, being able to exercise again and simply getting back to normal.

“Everyone wants that magic pill. At the end of the day, that’s what everyone wants, they want that pain to stop”.

In terms of interactions with the NHS the vast majority of patients felt that their con-cerns were listened to by the health professional although 20 (18.0%) did not. This was because they were not offered the treatment they expected, or at their initial GP appointment they were not examined and simply offered painkillers or in one case told that their condition was down to old age. For two patients not being lis-tened to had, they felt, resulted in inappropriate treatment and more pain.

“No - when I first saw my GP I was told I had two options either an operation or steroid injections. I didn’t want an operation but injections were never really explained even though I was referred to have them”.

Just under half of patients felt that they had been made aware of all of the treatment options available to them and a similar number felt that they had not and reported simply being told what would be happening to them. However it is reasonable to conclude that for this latter group their condition may have dictated that there was only one treatment option available to them but they were not directly told this.

“I was given lots of options, like Physioline, taking cod liver oil, doing exercises”.

“I was told about the treatment but not given options”.

For those who were offered a choice of treatments all but one felt that they under-stood the options and were able to make an informed choice. All but 18 patients were given information other than verbal, to help them make that choice and all re-ported finding it easy to understand. Half of patients felt that this information had in-fluenced their eventual choice of treatment and half felt that it had not because they either already knew about the treatments or they simply did what the health profes-sional suggested.

“Yes, it was my decision to have the operation”. “Yes, I decided against treatment and the information confirmed my deci-sion”.

All patients commented on whether they had felt part of the decision making pro-cess about their treatment and just over half felt that they had. One third felt that they had not. This was because they were just told what would happen, there was

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no treatment decision to make or they did not receive the treatment they asked for or expected.

“Yes, I knew it was up to me at the end of the day”. “I wasn’t given any choice, just got this”.

3.2 Post-treatment

After treatment had finished the average pain levels reported had fallen to three with one third of patients reporting no pain at all and two-thirds reporting pain of three or less. However, pain had not improved for 18 patients and had worsened for four. Just over half of patients were given information around how to manage their condi-tion after treatment. The majority of this group received information about exercise. A minority received information about pain management, weight management, stopping smoking and alcohol intake. All but seven had used the information and the vast majority found it useful. Just over half felt that their lives had changed posi-tively as a result of the information by having reduced pain, or becoming pain-free or by being able to resume normal activities. The remainder reported no change in their lives or were unable to attribute changes specifically to the information they had used.

“Yes, I can manage pain a lot better now”. “Not really, I just do exercises occasionally and live with pain”.

Two-thirds of patients reported that their quality of life had improved as they were able to do the things they did before, they had reduced pain or were now pain-free or they had improved mobility. The remaining third reported that there had been no improvement in their quality of life after treatment and five people said that it had worsened because their treatment had not been successful.

“It was like being in prison and then being given the freedom of movement”. “No difference whatsoever”. “Pain is getting worse, I can’t even cross my legs. The operation hasn’t done a thing”.

Sixty-two patients offered suggestions to help improve the quality of life for people with a similar bone or joint condition. This covered things the NHS could do, things patients could do and things other organisations could do.

“Get appointments sooner. I had to pay to go privately to a physiotherapist because I was in too much pain to wait for NHS to give treatment”. “I was surprised that I was offered physiotherapy over the phone. Face-to-face would be better as it is hard to describe symptoms over the phone”.

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4.0 Recommendations

It is clear to see that the majority of MSK patients experienced positive outcomes from their treatment. Patients’ main expectations before treatment were to be pain free or have reduced pain, to have increased mobility and to be able to get back to the things they did before. After treatment 79.2% of patients reported that their pain levels had reduced or they no longer had any pain and two-thirds of patients said that their quality of life had improved as their expectations had been met. However, for a minority of patients their outcome was less positive. Twenty-two patients reported no improvement in pain levels, including four people whose pain had worsened after treatment and for one third of patients there had been no improvement in their quality of life, with five reporting that it had worsened. Therefore based on the findings, some recommendations have been made to improve patient experience of the MSK pathway. Please note, we have reported on all recommendations made by patients and it is suggested that the MSK Steering Group take time to analyse this research, together with the report produced by NHS Gateshead CCG in order to develop patient-focused outcome measures and the future MSK service delivery model.

4.1 Communicating with patients 4.1.1 Treatment options

One of the key messages to emerge from this research was the need to communicate treatment options more clearly with patients and this was identified in a number of areas:

• Eighteen percent of patients felt that they were not listened to when they

sought help about their condition with the majority citing their initial GP appointment and not receiving the treatment they had expected.

• Just under half (48.6%) of patients, were not made aware of all of the treatment options available to them.

• Just over one-third of patients (37.8%) felt that they were not part of the decision-making process about their treatment because they were simply told what would happen, there was no decision to make or they didn’t receive the treatment they requested or expected.

It is recommended that:

• At the initial contact with the health professional patients are clearly informed

of the treatment options available to them:

o If there are no options available i.e. only one appropriate course of treatment for the patient, ensure that they understand this

o If patients visit their GP with expectations of receiving a particular treatment which is not appropriate for their condition, ensure that they are given a clear explanation why

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o At the end of the consultation confirm with patients that they understand the course of treatment and any decisions they need to make about their treatment

4.1.2 Expectations around waiting times

Sixty-two patients (55.9%) put forward suggestions about how to improve other patients’ quality of life. Seventeen people identified issues with their diagnosis, referrals and treatment taking a considerable amount of time. It is recommended that:

• Although it is not necessarily possible to reduce these times, ensure that patients are informed about how long things will take so that they have realistic expectations

4.1.3 Information about Physioline

Five patients had used Physioline and all said they would have preferred a face-to-face appointment with a physiotherapist as it is difficult to describe symptoms over the telephone or be talked through exercises or because they felt that they should have had a physical examination. It is recommended that:

• GPs who are referring to Physioline should make patients explicitly aware of

exactly what it is and that there is no face-to-face contact. They should also clearly explain to patients why this is the most appropriate course of treatment for them.

4.2 Practical changes

Forty-six patients (41.4%) reported not receiving any form of information around how to manage their condition after treatment. It is recommended that:

• All patients receive information to manage their condition after treatment, in an appropriate format.

Sixty-two patients (55.9%) offered suggestions about how to improve other patients’ quality of life. In terms of what the NHS could do, the following suggestions were put forward and should be considered: Six patients mentioned that acupuncture in particular worked well for them and that this should be offered to all patients.

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It is recommended that:

• Offering acupuncture as a standard treatment option for appropriate MSK conditions should be considered. This could be piloted with a particular group of patients with a common condition at the outset and evaluated to see if it has positive outcomes for patients and is financially viable to offer.

Four patients mentioned having support around pain management. It is recommended that:

• Health professionals discuss with patients any pain management issues they may have, offer advice where necessary and where appropriate refer patients to the Pain Management Service. If patients are aware of the Service but it is not appropriate for them patients, ensure that they know why this is the case.

One patient mentioned not being able to attend posture classes because they were timetabled during the day. It is recommended that:

• Some further research is carried out to see whether this is an issue for other patients, and if so consider scheduling both daytime and evening classes.

Section 1 – Introduction

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1.0 Introduction 1.1 Involve North East

Involve North East is an independent charity working across Newcastle and the North East. We are experts in innovative and practical involvement, working with patients, communities and harder to reach groups to gain the insight needed to design the best, most responsive and cost-effective health and social care services.

1.2 Context

Musculoskeletal (MSK) pain is related to the bones, joints, muscles or other parts of the MSK system. Depending on their condition, patients in Newcastle could access the following NHS services:

• Connect Physioline • Connect MSK Physiotherapy • Community Physiotherapy • Intermediate Musculoskeletal Assessment and Treatment Team (IMATT)

service • Magnetic resonance imaging • Secondary care consultant • Biomechanics • Neurology • Neurosurgery • Rheumatology • Trauma and Orthopaedics

NHS Newcastle Gateshead Clinical Commissioning Group Alliance is currently reviewing and redesigning the MSK care pathway to ensure that patients receive the best possible care. The new service will aim to provide:

• A single route of access model of care with a patient pathway that

ensures they are seen by the right person, in the right place at the right time • Education to GPs and primary care staff so they are able to determine what the

most appropriate pathway for patients is, as early as possible in the patient journey

• Advice, guidance and support to patients around how to self-manage their own condition when it may be more appropriate than onward referral for treatment or surgery

• Shared decision-making between clinicians and patients in order to jointly determine the most appropriate route for a patient to follow to meet the outcome they want to achieve

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The new model of service delivery will be measured in terms of the outcomes it delivers. A positive patient experience is an important outcome for all commissioned services. These outcomes will include both service measures and personal (patient-focused) measures. Understanding what really matters to patients and their families is crucial in this process and will better enable the delivery of safe, effective outcomes along with high levels of patient satisfaction.

1.3 The project

In 2013 Involve North East carried out some consultation work exploring patients’ experiences of MSK services. Therefore, this complementary engagement activity focused on the expectations and outcomes of Newcastle–based MSK patients who have recently completed treatment.

1.3.1 Aim

To explore patients’ expectations and outcomes of the MSK service following their treatment, to inform the development of patient-focused outcome measures and the design of the future MSK service delivery model.

1.3.2 Objectives

The key objectives of the project were to: • Understand how patients’ conditions affected their lives before treatment • Explore patients’ expectations of the service before treatment • Gauge whether patients felt listened to when they first presented their condition • Gauge patients’ involvement in the decision-making process about the

treatment • Understand how patients’ conditions affected their lives after treatment • Ascertain the effectiveness of information given to patients after their treatment • Identify ways to improve the quality of life for people living with a bone or joint

condition

Section 2 - Methodology

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2.0 Methodology

In order to meet the objectives of the project, a number of distinct and complementary qualitative techniques were used. A qualitative methodological approach was deemed to be the most appropriate as it is concerned with gaining a depth of understanding of how people feel, their beliefs, reasoning and motivations and therefore fitted with the objectives of the project.

2.1 Interviews

A programme of one-to-one telephone interviews was established, to meet the review’s timescales and allow us to explore issues arising from questions, prompting interviewees to deliver richer and more detailed responses than is usually yielded by written questionnaires.

2.2 Focus groups

Group discussions or focus groups are commonly associated with collecting qualitative data and this technique was used to gain insight into people’s expectations and experiences. A group setting with members sharing a common interest enables them to feel comfortable and able to give their views freely. In addition, interaction within the group may also produce other data, when for example a memory is triggered by someone else’s comments. One focus group was held with a group of patients who have MSK conditions and have been through the Pain Management Programme provided by Newcastle upon Tyne Hospitals NHS Foundation Trust and to ensure consistency the same topics were covered as in the interviews.

2.3 Questionnaires

Due to the limited consultation period and the resource-heavy techniques employed above, patients were also given the opportunity to complete a self-administered online questionnaire. Again the questions were consistent with those used in both the interviews and focus group to enable data to be analysed easily.

2.4 Participants

Anyone living in Newcastle who had used any of the MSK services between 2012 and June 2013 and had completed treatment, were eligible to take part. In order to identify these patients we worked with Connect who provide community MSK services on behalf of the NHS in Newcastle to identify suitable patients. We were given a list of names and contacted patients randomly by telephone and conducted interviews either

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at the time or at an arranged convenient time the following week. Eighty-six patients took part in the research this way. We also sent out a letter to 300 patients who had not taken part in a telephone interview explaining the project and asking whether they would like to be involved. They were given the option of contacting Involve North East to take part in a telephone interview or completing an online questionnaire. Twenty-two patients responded to the letter; 16 took part in a telephone interview and six completed the online questionnaire. Focus group participants were recruited by the Team Lead for the Pain Management Service. Three participants took part in the focus group. Overall we engaged with 111 MSK patients. Due to time pressures we were unable to focus recruitment on particular groups and we would suggest that any further engagement allows time to do so, ensuring that the views expressed are truly representative. For a full participant profile, see Appendix 1.

Section 3 - Findings

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3.0 Findings

This section provides a summary of the findings of the interviews, focus group and questionnaires completed by 111 MSK patients.

3.1 Patient’s condition

Patients were initially asked to describe their bone or joint condition. The tables below show the condition(s) of the patient if known, and the affected body part(s).

Condition(s)

No. of patients

% of responses

Arthritis 21 27.3 Sciatica 5 6.5 Achilles Tendon 2 2.6 Carpel tunnel 2 2.6 Cartilage problems 2 2.6 Osteoporosis 2 2.6 Plantar Fasciitis 2 2.6 Rotator cuff 2 2.6 Spasms 2 2.6 Trauma 2 2.6 Whiplash 2 2.6 Anterior Cruciate Ligament 1 1.3

Brachial neuritis 1 1.3 Bronchiectasis 1 1.3 Bulging disc 1 1.3 Charcot-Marie-Tooth 1 1.3 Coccydemia 1 1.3 Collapsed ankle 1 1.3 Disc 1 1.3 Dislocated knee 1 1.3 Haemorrhoids 1 1.3 Hyper mobility 1 1.3 Impinged shoulder 1 1.3 Irritable Bowel Syndrome 1 1.3

Medial Collateral Ligament 1 1.3

Morton's Neuroma 1 1.3

No. of patients

% of responses

Nerve damage 1 1.3 Osteoarthritis 1 1.3 Posterior Cruciate Ligament 1 1.3

Psoriatic Arthritis 1 1.3 Rheumatoid Arthritis 1 1.3 Ruptured muscle 1 1.3 Slipped disc 1 1.3 Spine curvature 1 1.3 Spondylitis 1 1.3 Spondylosis 1 1.3 Strained Hamstring 1 1.3 Stress fracture 1 1.3 Tendon 1 1.3 Tendon Myopathy 1 1.3 Tendonitis 1 1.3 Lateral Epicondylitis 1 1.3 Torn ligament 1 1.3 Triple heart bypass 1 1.3 Total 77 100.0

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Affected body part(s)

No. of

patients* % of

responses Knee 29 20.9 Back 23 16.5 Leg 17 12.2 Shoulder 16 11.5 Hip 12 8.6 Neck 8 5.8 Foot 7 5.0 Arm 4 2.9 Ankle 3 2.2 Heel 3 2.2 Elbow 2 1.4 Hands 2 1.4 Nerve 2 1.4 Spine 2 1.4 Wrist 2 1.4 Calf 1 0.7 Chest 1 0.7 Finger 1 0.7 Groin 1 0.7 Joints 1 0.7 Thigh 1 0.7 Thumb 1 0.7 Total 139 100.0 *Patients may have more than one condition

3.2 Effects of the condition

Before having any treatment at all, patients described how their condition had affected their everyday life and were asked to rate the level of pain they were in, with one being very little pain and 10 being very severe pain.

3.2.1 Everyday life

Patients described a wide range of ways their condition affected their everyday lives:

• Mobility issues • Exercising • Pain • Hobbies and interests • Activities of daily living • Working • Sleeping

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Mobility issues, such as walking, lifting, climbing the stairs and bending, were mentioned most frequently (by approximately two fifths of people).

“It was horrendously debilitating; I had no energy, I couldn’t lift my arms”.

“Walking and climbing stairs was painful”.

“I couldn’t sit for a long time, couldn’t walk very far, and was uncomfortable all the time”.

“I have two small children and I couldn’t pick them up”.

About one sixth of patients described pain or discomfort as the primary impact on their everyday life.

“Before treatment I was in extreme pain”. “It caused me moderate pain”.

Just over one-in-ten patients were unable to carry out activities of daily living such as washing and dressing.

“It was terrible, I was restricted. I couldn’t carry bags, hoover the house”. “In pain all the time; I couldn’t do my own hair”.

Being unable to sleep through the night, being unable to exercise or take part in hobbies or social interests were also identified as ways patients’ lives had been impacted upon by their condition.

“It was painful to do anything, including sleeping”. “I couldn’t sleep properly, it was a constant niggle”.

“I stopped exercising because it was painful”. “I couldn’t run, or walk more than two or three minutes without excruciating pain. It has led to me putting on weight and my general fitness has reduced”.

Eight people found it difficult to work or had to stop working altogether.

“About 20 years ago now, I used to be a chef and I had to give it up which is a nightmare because I’m still young and I don’t work now because I’ve got loads of problems”.

“I had to give up my job as a supply nursery nurse, couldn’t walk and was housebound, couldn’t look after my family, lost half a stone and had to take painkillers”.

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Finally six people said their condition had had no real impact on their day-to-day life and they just tried to carry on as normal.

“I tried not to let it affect me at all”. “I use painkillers so that it doesn’t stop me doing anything”.

3.2.2 Level of pain

Patients reported pain between one - very little pain and 10 - very severe pain but the average pain level reported was seven. One hundred and six patients provided a score and two did not give a score. A further three stated that they had no pain at all; one had “no pain, just stiffness”, another had “a cough and breathlessness, but no pain” and another answered on behalf of their young child who had not displayed any signs of pain before diagnosis.

3.3 Expectations of treatment

Patients were also asked what they hoped their treatment would achieve and the following were mentioned:

• Being pain-free/reduced pain • Getting a diagnosis • Having increased mobility • Being able to exercise again • Getting back to normal

Just over two-thirds of patients stated that they wanted to be free from pain and discomfort or at least to have a reduction in the pain they were experiencing.

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“Everyone wants that magic pill. At the end of the day, that’s what everyone wants, they want that pain to stop”. “Just to be pain-free, I didn’t mind how”. “I wanted less pain - that was the main thing”.

For about a sixth of patients, simply getting a diagnosis of their condition was their initial expectation and for a sixth, increased mobility was their aim.

“I was hoping they would find the cause of pain, that I would get full range of movement back and no pain”. “To know what was wrong and see what I could do to make it better, no pain”. “To find out what was wrong and get rid of it”. “To be able to walk pain-free. I didn’t want to be non-mobile for a period of time, as I look after my wife who has a heart problem and I also have a back problem from an industrial incident so I like to keep moving”. “Make things easier for myself, lifting and carrying, that kind of thing”.

Exercising and just getting back to normal were also expectations of a similar number of patients.

“I am 82 and still active - I wanted to get back to dancing”. “I wanted to get back to playing basketball and find out what was wrong”.

Six participants mentioned other expectations they had, two wanted to be able to “get a good night’s sleep”, two wanted to be able to play golf, one wanted to be able to return to work and one patient wanted “specially made shoes which would be more supportive”. A further four patients stated that they were unsure what to expect or had no expectations.

3.4 Listening to patients

Patients were also asked whether they felt that their concerns were listened to by the health professional when they sought help about their condition and four out of five patients felt that they were.

“Well I’m really lucky; I’ve got a good GP. My condition is quite rare and he knows all about it and I go to him first and he tries to sort it out first before I go to see anyone else. I’m under loads of consultants so the first step for me is to go to see him. I just wish everyone I knew had a GP like that; you can build a relationship with him”.

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“Without a doubt: they sent me straight for an x-ray”. “At the start - I would say three weeks, I was limping and still driving the car and got better, so I felt like a bit of a fraud! But they took me seriously and told me what I had”. “Yes the doctor was lovely; she said she could get me into hospital within 10 days to have an operation, but I couldn't do that because I'm a carer”.

A further two patients said that they felt like they were listened to but that the health professional did not seem to understand what they were saying or what they wanted.

“They listened but I don't think they understood particularly because they didn’t seem to have a clue about the problem”.

Twenty patients (18.0%) however believed that some of the health professionals they had been in contact with had not listened to them. For some the issue was with the treatment they expected to receive but were not offered.

“I asked for massage but didn’t get it”. “No, I wanted a scan but was sent for physiotherapy” “No - when I first saw my GP I was told I had two options either an operation or steroid injections. I didn’t want an operation but injections were never really explained even though I was referred to have them”.

Two patients believed that not being listened to had resulted in inappropriate treatment and more pain and one felt that this was because they were trying to keep them off the waiting list for an operation.

“No not at all. I don’t think they recognised the level of pain I was in; they thought painkillers and physiotherapy would solve it. I felt they were keeping me off the waiting list. The only health professional who helped me was my orthopaedic surgeon who within two seconds told me to get booked in with him to get the op”. “With regards to my knee, my concerns weren't listened to, I was forced to do exercise which made it much worse, so I ended up having surgery”.

Others felt that at their initial GP appointments they were not listened to and often just prescribed painkillers or misdiagnosed.

“Went to the GP, it took a couple of visits. At first I was told to take pain killers but eventually I just asked to get it sorted so I was sent to see the physiotherapist”.

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“From the GP, not really, they said ‘everything you have is to do with getting older’”. “When I first saw my GP, I was given a prescription for pain killers and told to use cotton wool in my shoe. I went back some time later and saw a different GP. I was then referred to see someone on Shields Road to look at my shoes. When I saw them they said I needed an operation and I was referred to the Freeman. But it took over a year”. “I went for painkillers, wasn’t really examined and was given tablets. It was the third doctor I saw about it, she wrote me a sick note for six weeks and I said but I don’t want one, and she said it was non-negotiable, that I needed to go on the sick. She was the one that set the ball rolling, got me to physiotherapy…”

3.5 Treatment

Patients were also asked about their treatment in terms of being made aware of all of the options available to them, whether they understood those options and whether they felt part of the decision making process around their treatment.

3.5.1 Treatment options

Just under half of patients (54) were not made aware of all of the treatment options available and were simply told what would be happening to them, although it is reasonable to conclude that there may have been only one option available, but patients were not specifically told this.

“I was told about the treatment but not given options”. “I was just told the GP would send my details to Physioline”. “I was just told to go to physiotherapy”. “No, when I read up on Morton's Neuroma I read about a new treatment from America that was available in the UK, when I asked about it at the Byker Clinic they had never heard about it”. “I went to see an orthopaedic surgeon and this time they said to see a neurosurgeon. I thought well should I see one over the other but they didn’t explain any of that to me and you know, I’m not stupid”.

Two fewer patients said that they were made aware of all of the treatment options available.

“It’s just a sit down discussion. I’ll go see him [GP] and he’ll see, whatever it is, medication or scan, he’ll try his best. I mean you’re only

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supposed to have a 10 minute appointment but he’ll sit and try and talk me through things”.

“I was given a combination. I was told I could try painkillers. I went back a few times and tried a few things but nothing worked, I did exercises given by the physiotherapist”. “Yes, I tried physiotherapy, acupuncture, painkillers but it was difficult to find a suitable treatment until they knew it was a fracture. The GP referred me to Connect and I had an MRI [Magnetic Resonance Imaging] scan at the Freeman”. “I was given lots of options, like Physioline, taking cod liver oil, doing exercises”.

Three people did not know whether they had been told about all of the options, or simply could not remember.

3.5.2 Choice of treatment

Only one person who had been offered treatment options said that they did not feel that they understood the options enough to make an informed choice. All others reported that they did.

“Yes, they mentioned acupuncture; I read the information and decided against it”. “Yes, they explained everything very clearly, it was absolutely brilliant”. “Yes, it was my decision to have the operation”.

3.5.3 Information about treatment options

Patients were asked whether they were given any information about their treatment options, such as a leaflet or other literature. Eighteen patients had not received any information other than verbal explanations; those who had, described exercise sheets and leaflets. However one patient reported receiving incorrect information – “I was given a leaflet but it was about a bursa and I didn't have one of those”.

All patients who had received information reported that it was easy to understand although one commented on the quality of it stating that it “wasn’t very good”.

Patients who had received information were also asked whether it had influenced their eventual treatment choice. Half said that it had:

“Yes, I decided against treatment and the information confirmed my decision”.

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“Yes; it made me nervous but I still wanted to do it”. Half said that it had not:

“No, I already knew about it”. “No, I just did what they suggested”.

3.5.4 Decision-making process

All patients were also asked whether they had felt part of the decision making process about their treatment. Just over half felt that they were although two said they had to “push” for things to happen.

“He asks what I want. I feel part of the decision”.

“Yes, I wasn’t talked out of it or into anything”. “Yes, I knew it was up to me at the end of the day”. “Yes, I chose not to go into hospital because I'm a carer”.

Just over one-third of patients felt that they were not part of the decision process about their treatment. This was because they felt that they were “just told what would happen”, there was no treatment decision to make or they did not receive the treatment they asked for or expected.

“I followed what I was told”. “I just accepted that what they said is right”. “There wasn’t really any decisions to make - I went there expecting to get physiotherapy exercises and that's what I got”. “No, it was the only option”. “I wasn’t given any choice, just got this”. “No. I should have been referred for physiotherapy after the steroid injection but I wasn't”. “No. I asked for referral to the pain clinic. They said it was for maintaining diet and exercise and not appropriate for me, so the doctor wouldn’t refer me”. “No I wasn’t told what would happen. I wrote a letter of complaint because they did a procedure on me that I didn’t know what it was. The Connect doctor told me I'd get injection in my hip for steroids but I found out later it was an anaesthetic!”

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“No, I was hoping to get surgery quite early but you have to go through the process, scans took ages. I wasted so many hours going to the physiotherapist, getting a scan straight away would have saved time and money”. “Not particularly, because the treatment I asked for which was sports injury treatment wasn’t available so I got what I was given”.

Other patients either did not know or did not respond to this question.

3.6 After treatment 3.6.1 Level of pain

In order to try and gauge the effectiveness of the treatment they had received, patients again rated the level of pain they were in after treatment had finished, with one being very little pain and 10 being very severe pain. As discussed in section 3.2.2, the average reported pain before treatment was 7. After treatment, this fell to 3, with one third of patients reporting no pain at all and over two-thirds reporting pain of three or less.

The chart overleaf shows the pain levels reported before and after treatment with a clear overall reduction in pain after treatment.

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However, when looking at each individual patient’s pain scores, as shown in the table below, it is clear to see that pain had not improved for 18 patients and had in fact worsened for four.

Change in pain after treatment

No. of patients

-3 1 -2 1 -1 2 0 14 1 3 2 8 3 7 4 12 5 11 6 10 7 10 8 13 9 8 10 4

Total 104

Seven patients did not quantify their pain levels after treatment but several commented as follows:

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“Sometimes it’s higher than before. If I do too much I'll be in a lot of pain, the operation didn’t work at all”. “The pain isn't as severe but the frequency has increased and they are not clearing [not as much pain-free time]”. “The problem is ongoing but after acupuncture the pain goes away for a while, often months”. “I can't tell - I'm taking tramadol at the moment”.

3.6.2 Information provision

Patients were also asked whether they were given any information around how to manage their condition after their treatment. A little over half of patients (65 people) reported receiving some form of information after their treatment. For patients using the Pain Management Service they received a considerable amount of invaluable information.

“Loads of information, like a big file and you keep that so you can refer to”. “Ah yes, they hand out leaflets about whatever they’re talking about that week. Like one week it will be about sleep so how you can help yourself to get a good sleep. They hand out leaflets and you get a relaxation CD and you put all the information together, make your own notes so you can go back at any time and use it”. “It’s about things like how to pace yourself, how to do something, how to set yourself targets, goals, objectives. For example, you have to set yourself a goal, this is about two or three weeks into it. Mine was to get back to dancing, even if it was just once because that was something I loved and something I did with my husband, so then it was like what do I have to do to work towards that? It challenged me to do it, to make the time to do it and it makes you think in a different way as well”.

For others the information varied, although for the majority of patients who said that they had received information, this was about exercises they should do post-treatment.

Information type No. of patients Exercise 56 Pain management 6 Weight management 5 Stopping smoking 2 Alcohol intake 1 Other 8

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The ‘other’ information patients received covered:

• How to improve posture whilst sitting and driving • Back care • What shoes to wear • What to do and what not to do x2 • Knee pain - osteoarthritis • Self-administered injections • British Lung Foundation leaflet about the condition • Information about Warm Zone from the hospital (so the patient could get

central heating installed instead of night storage heaters)

All but seven patients had used the information and of those only two gave a reason why they had not. One patient had been given information about alcohol and smoking which was not relevant to them because they did not drink or smoke and another patient had been given information about the correct shoes to wear to help their condition and they were already wearing the appropriate shoes. The vast majority of people who had used the information found it useful although five people said that it was not. One patient reported that they “did the exercises for a bit but it just got worse”, another stated that it was “not as useful as having someone show you how to exercise” and a third said they could not say for sure as they were currently taking painkillers.

Finally, related to information provided after treatment, patients were asked whether they felt that their life had changed by using their post-treatment information. Just over half felt that it had had a positive impact on their lives. Those who elaborated said they had reduced pain or were pain-free or were able to resume normal activities.

“Yes, I can manage pain a lot better now”. “Yes, I'm able to play golf”. “Yes, I can stand longer”. “I do the exercises every day if I get any twinges”.

Those who had used the pain service information also agreed that it had had a positive impact on their lives.

“Yes and it reassures you that you’re not making it up, you’re not being pathetic and you’re not putting on other people which kind of relaxes you in a way”.

Over one-third of patients said that their lives had not changed as a result of using the information.

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“Not really, I just do exercises occasionally and live with pain”. “No, nothing seems to have worked”.

Three people said they were unable to attribute changes in their life to the information they had been given, one because they were taking painkillers, one said “I can't say, I used the information to help me recover and I recovered” and a third said “It’s hard to say - carry on as normal, that's what the information said”.

3.6.3 Quality of life

Patients also discussed whether their quality of life had changed after treatment. Two-thirds of patients reported that their quality of life had improved. Some simply stated that it had improved and others related it to:

Improvement No. of patients Being able to do the things they did before 28 A reduction or removal of pain and discomfort 16 An improvement in mobility 12

“I'm sleeping much better, it turned me around, it's fantastic”. “I got me back to work comfortably - I was restricted before as I have to stand at work”. “Fantastic - I can do all the things I used to do, and it made me appreciate my life”. “I got back to normal, got rid of the problem”.

“It was dramatically better after - marvellous. The pain and numbness totally went after two days. I used to get fed up - it was terrible”. “It was like being in prison and then being given the freedom of movement”. “There is very little I can’t do now, I walk, ride my bicycle and swim”.

One third of people reported that there had been no improvement in their quality of life.

“No difference whatsoever”. “About the same as before”. “I try not to let it affect my quality of life”.

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“Haven't quite got back to doing what I want to do just yet. I'm a volunteer for British Red Cross and still can't go back to doing this properly on the ambulances because of my lack of strength”. “After the first operation quite a lot better, however the next one was not nearly as successful. I still have quite a lot of pain, stiffness and swelling in the area of the joint concerned and sleeplessness due to pain. I am unable to get comfortable in bed”.

For patients using the Pain Management Service they simply had to accept that they would not get any better but had learned coping strategies to help maintain their quality of life as much as possible.

“I think you’ve got to accept what you’ve got to start with and then try, like one very valuable thing that I learned - which was something I wasn’t actually aware that I was doing – was, I was still trying to do all the housework at home and stuff like that. You have to go home and say I can’t manage, what are you going to do to help? Things like that, there’s a lot of learning techniques”. “Even if you’re having a good day, only do so much because for the next two days you might be absolutely shattered if you try to do too much”.

Five people actually reported that their quality of life had worsened after their treatment finished.

“I never go out, I never walk. I used to be able to walk the dogs and play darts, I never get to meet my friends anymore”. “The physiotherapy is making it all worse”. “Pain is getting worse, I can’t even cross my legs. The operation hasn’t done a thing”. “Not a lot, because of the tendon damage I sustained by over-doing the exercises!”

3.7 Suggestions to help improve other patients’ quality of life

Finally, patients were asked whether there was anything else they could tell us which could help improve the quality of life for people living with a bone or joint condition similar to their own. Sixty-two patients put forward suggestions or comments which covered:

• Things the NHS can do • Things the patient can do • Things other organisations can do • Looking outside of the NHS for treatment

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3.7.1 Things the NHS can do

• More timely referrals, diagnosis and treatment • Physiotherapy services • Offered treatment options • Offer medicine reviews • Offer acupuncture and massage as standard • Offer pain management

Just over one quarter of patients felt that there should be more timely referrals, diagnosis and treatment.

“Get appointments sooner. I had to pay to go privately to a physiotherapist because I was in too much pain to wait for NHS to give treatment”. “I should have been referred to hospital sooner- took 7 months, and by that time the physiotherapist at work had sorted the problem out through ultraviolet treatment”. “My doctors refused to refer me straight to the hospital, they were no help. Doctors should recognise that patients who need a hip replacement won't be helped by physiotherapy. I should have gone a year earlier. They kept telling me I was too young to have a replacement but I had no quality of life”. “When you get a back spasm you need to see someone quickly - a day or so but it can take two to three weeks for an appointment”. “I would definitely say that early diagnosis is key. The process is a bit backwards, wasting more time when a scan is needed earlier. I waited six months for a scan; it had been affecting me for over a year. It’s a long drawn out process”.

Physiotherapy services were the next most frequently highlighted area, discussed by 11 patients. They suggested that people should persevere with physiotherapy, should listen to the physiotherapist and there should generally be more emphasis on it. However there were also a number of suggestions to improve the service. Five patients requested face-to-face appointments as opposed to being referred to Physioline, another asked for posture classes to be held outside of work hours and another complained that when their physiotherapist went off sick they were not replaced and the patient missed six weeks of appointments.

“I was surprised that I was offered physiotherapy over the phone. Face-to-face would be better as it is hard to describe symptoms over the phone”.

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“Physiotherapy puts on a posture class which was really useful but it was in the middle of the day which excludes people straight away and the majority of people were of a working age too. Luckily, my workplace is understanding, but others might not be”.

Three people suggested that patients should be given treatment options and their choices listened to.

“People should be made more aware of the options available to them”. “They should listen more to what the patient is saying and what the patient would like from treatment”.

One person suggested that before referring to MSK services all patients should be given a medicine review:

“HRT [Hormone Replacement Therapy] was impacting on my pain. When I stopped HRT the pain reduced almost immediately. There should have been a complete review of every medication I was taking, to find out the cause of the pain”.

Six patients mentioned how good they had found acupuncture and suggested that all patients should be offered it and massage.

“To offer acupuncture for all MSK conditions, it's brilliant”. “Make acupuncture more mainstream”.

Finally, four patients mentioned support around pain management. Patients who used the Pain Management Service felt that this should be offered to all although one pointed out that “a lot of GP’s don’t even know it’s available”.

“I think it would help a lot of people getting onto this course. I know it’s a limited course and it’s all down to money but it’s great, it’s changed my life anyway!”

3.7.2 Things the patient can do

• Do exercises • Present at their GP practice

Seventeen patients felt that exercise would help improve the quality of life for people with a bone or joint condition.

“Doing the exercises is imperative - you need to work at it yourself”. “You have to be prepared to help yourself and do the exercises you are given”. “Exercising is the most important thing. Keep moving. The catch 22 is you need pain management to achieve this”.

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“Yes get them to lose weight…losing weight and regular exercise are the key to helping people with mobility and joint problems”.

Ten patients suggested that people should present at their GP practice as soon as they feel pain or discomfort.

“Tell the doctor about it early!” “Seek advice - made my life better”. “I suggest that people should be honest. A lot of people only tell doctors half the story, but they can't help you if you don't tell them the truth”. “Go to the GP and get referred”.

3.7.3 Things other organisations can do

One person felt that patients should be offered support around activities of daily life and for them getting someone to help put their bins out was important.

“I can't get my bins in and out. There is a service that does it for you, I rang them but nothing's happened yet”.

3.7.4 Looking outside of the NHS for treatment

One patient said that using private health services had been the answer for them.

“The only reason I feel better now is because I went for help outside of the NHS for answers. I went for AposTherapy and to see a chiropractor - they’ve really helped. I went to the doctors again about my knee and I said I wanted to see a rheumatologist, I got a hospital appointment through the post and when I got there it was actually to see another physiotherapist - I wasn't very happy at all!”

3.8 Summary 3.8.1 Pre-treatment

Patients who had had a variety of bone or joint conditions took part in the engagement. Their conditions restricted their daily lives in terms of mobility, pain, carrying out everyday activities, sleeping, exercising, taking part in hobbies and interests and being able to work. The average pain score they gave before their treatment was seven. The main expectation patients had about their treatment was to be pain-free or have reduced pain, this was followed by getting a diagnosis, having increased mobility, being able to exercise again and simply getting back to normal. In terms of interactions with the NHS the vast majority of patients felt that their concerns were listened to by the health professional although 20 (18.0%) did not. This

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was because they were not offered the treatment they expected, or at their initial GP appointment they were not examined and simply offered painkillers or in one case told that their condition was down to old age. For two patients not being listened to had, they felt, resulted in inappropriate treatment and more pain. Just under half of patients felt that they had been made aware of all of the treatment options available to them and a similar number felt that they had not and reported simply being told what would be happening to them. However it is reasonable to conclude for this latter group, that their condition may have dictated that there was only one treatment option available to them, but they were not directly told this. For those who were offered a choice of treatments all but one felt that they understood the options and were able to make an informed choice. All but 18 patients were given information other than verbal, to help them make that choice and all reported finding it easy to understand. Half of patients felt that this information had influenced their eventual choice of treatment and half felt that it had not because they either already knew about the treatments or they simply did what the health professional suggested. All patients commented on whether they had felt part of the decision making process about their treatment and just over half felt that they had. One third felt that they had not. This was because they were just told what would happen, there was no treatment decision to make or they did not receive the treatment they asked for or expected.

3.8.2 Post-treatment

After treatment had finished the average pain levels reported had fallen to three with one third of patients reporting no pain at all and two-thirds reporting pain of three or less. However, pain had not improved for 18 patients and had worsened for four. Just over half of patients were given information around how to manage their condition after treatment. The majority received information about exercise. A minority received information about pain management, weight management, stopping smoking and alcohol intake. All but seven had used the information and the vast majority found it useful. Just over half felt that their lives had changed positively as a result of the information by having reduced pain, or becoming pain-free or by being able to resume normal activities. The remainder reported no change in their lives or were unable to attribute changes specifically to the information they had used. Two-thirds of patients reported that their quality of life had improved as they were able to do the things they did before, they had reduced pain or were now pain-free or they had improved mobility. The remaining third reported that there had been no improvement in their quality of life after treatment and five people said that it had worsened because their treatment had not been successful. Sixty-two patients offered suggestions to help improve the quality of life for people with a similar bone or joint condition. This covered things the NHS could do, things patients could do and things other organisations could do.

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Section 4: Recommendations

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4.0 Recommendations

It is clear to see that the majority of MSK patients experienced positive outcomes from their treatment. Patients’ main expectations before treatment were to be pain free or have reduced pain, to have increased mobility and to be able to get back to the things they did before. After treatment 79.2% of patients reported that their pain levels had reduced or they no longer had any pain and two-thirds of patients said that their quality of life had improved as their expectations had been met. However, for a minority of patients their outcome was less positive. Twenty-two patients reported no improvement in pain levels, including four people whose pain had worsened after treatment and for one third of patients there had been no improvement in their quality of life, with five reporting that it had worsened. Therefore based on the findings, some recommendations have been made to improve patient experience of the MSK pathway. Please note, we have reported on all recommendations made by patients and it is suggested that the MSK Steering Group take time to analyse this research, together with the report produced by NHS Gateshead CCG in order to develop patient-focused outcome measures and the future MSK service delivery model.

4.1 Communicating with patients 4.1.1 Treatment options

One of the key messages to emerge from this research was the need to communicate treatment options more clearly with patients and this was identified in a number of areas:

• Eighteen percent of patients felt that they were not listened to when they sought

help about their condition with the majority citing their initial GP appointment and not receiving the treatment they had expected.

• Just under half (48.6%) of patients, were not made aware of all of the treatment options available to them.

• Just over one-third of patients (37.8%) felt that they were not part of the decision-making process about their treatment because they were simply told what would happen, there was no decision to make or they didn’t receive the treatment they requested or expected.

It is recommended that:

• At the initial contact with the health professional patients are clearly informed of

the treatment options available to them:

o If there are no options available i.e. only one appropriate course of treatment for the patient, ensure that they understand this

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o If patients visit their GP with expectations of receiving a particular treatment which is not appropriate for their condition, ensure that they are given a clear explanation why

o At the end of the consultation confirm with patients that they understand

the course of treatment and any decisions they need to make about their treatment

4.1.2 Expectations around waiting times

Sixty-two patients (55.9%) put forward suggestions about how to improve other patients’ quality of life. Seventeen people identified issues with their diagnosis, referrals and treatment taking a considerable amount of time. It is recommended that:

• Although it is not necessarily possible to reduce these times, ensure that patients are informed about how long things will take so that they have realistic expectations

4.1.3 Information about Physioline

Five patients had used Physioline and all said they would have preferred a face-to-face appointment with a physiotherapist as it is difficult to describe symptoms over the telephone or be talked through exercises or because they felt that they should have had a physical examination. It is recommended that:

• GPs who are referring to Physioline should make patients explicitly aware of

exactly what it is and that there is no face-to-face contact. They should also clearly explain to patients why this is the most appropriate course of treatment for them.

4.2 Practical changes

Sixty-two patients (55.9%) offered suggestions about how to improve other patients’ quality of life. In terms of what the NHS could do, the following suggestions were put forward and should be considered: Six patients mentioned that acupuncture in particular worked well for them and that this should be offered to all patients.

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It is recommended that:

• Offering acupuncture as a standard treatment option for appropriate MSK conditions should be considered. This could be piloted with a particular group of patients with a common condition at the outset and evaluated to see if it has positive outcomes for patients and is financially viable to offer.

Four patients mentioned having support around pain management. It is recommended that:

• Health professionals discuss with patients any pain management issues they may have, offer advice where necessary and where appropriate refer patients to the Pain Management Service. If patients are aware of the Service but it is not appropriate for them patients, ensure that they know why this is the case.

One patient mentioned not being able to attend posture classes because they were timetabled during the day. It is recommended that:

• Some further research is carried out to see whether this is an issue for other patients, and if so consider scheduling both daytime and evening classes.

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Appendices

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Appendix 1 – Participant profile

Gender No. of participants % of participants Male 45 40.5 Female 66 59.5 Total 111 100.0 Age No. of participants % of participants Under 18 2 1.8 18-24 2 1.8 25-34 3 2.7 35-44 21 18.9 45-54 9 8.1 55-64 27 24.3 65-74 29 26.1 74-84 17 15.3 85 and over 1 0.9 Total 111 100.0 Location – first part of postcode No. of participants* % of participants NE2 3 2.7 NE3 16 14.5 NE4 7 6.4 NE5 44 40.0 NE6 6 5.5 NE7 2 1.8 NE15 32 29.1 Total 110 100.0

* One patient did not know their postcode Ethnic background No. of participants % of participants White British 110 99.1 Black/Black British 0 0.0 Asian/Asian British 0 0.0 Chinese 0 0.0 Mixed 0 0.0 Other Ethnic Group 1 0.9 Total 111 100.0

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Do you consider yourself to have a disability? No. of participants % of participants Yes 25 22.5 No 86 77.5 Total 111 100.0

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Appendix 2 - Questions About your condition 1. Can you tell us about your bone or joint condition? 2. Before you had treatment, how did your condition affect your everyday life?

3. Before you had treatment, on a scale of 1 to 10, with 1 being very little and 10

being very severe, what was your level of pain?

4. What did you hope your treatment would achieve? [Prompts - walk the dog, be able to pick up your child/grandchild/exercise/be pain free etc.)

5. When you sought help about your condition, did you feel that your concerns were listened to by the health professional?

6. Were you made aware of all the treatment options available to you?

7. Did you understand your treatment options so you could make an informed choice?

8. Were you given any other information about your options? [Prompt – literature/leaflet/signposting to additional information]

9. If yes, was the information you were given easy to understand?

10. Did the information you were given influence your choice of treatment?

11. Did you feel part of making the decision making about the treatment for your bone or joint condition?

After your treatment

12. After your treatment, on a scale of 1 to 10, with 1 being very little and 10 being very severe, what was your level of pain?

13. To help manage your condition, were you given information on how to look after yourself better?

14. If yes, what information were you given? • Weight management • Exercise • Stopping smoking

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• Alcohol intake • Managing your pain • Counselling • Other (please explain)

15. Was the information you were given useful?

16. Have you used the information?

17. If yes, has your life changed by using the information?

18. After treatment, how did your quality of life change?

19. Is there anything else you can tell us which could help improve the quality of life

for people living with a bone or joint condition?

Monitoring questions Gender: Male Female Age: Under 18 18 – 24 25 – 34 35 – 44 45 – 54 55 – 64 65 – 74 75 – 84 85 and over To which group do you feel you belong? White British Black/Black British Asian/Asian British Chinese Mixed Other Ethnic Group Prefer not to say Do you consider yourself to have a disability? Yes No What is the first part your postcode? _ _ _ _