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TRANSCRIPT
A Model of Proactive Best Supportive Care
for Patients with Lung Cancer
A Service Development led by Fife Specialist Palliative Care
November 2016
FOREWORD
It is a pleasure to introduce this report on the work that has been
undertaken within the Fife Palliative Care Service to improve the
care of patients who are diagnosed with lung cancer. This pilot
project, which was funded from the Transforming Care After
Treatment programme, is a very important step in defining the
care pathway for patients so that the teams looking after them
can deliver the best supportive care we can offer.
The pathway identifies the key steps in terms of individualised
assessment, care planning with patients and their families/carers
and follow-up to ensure that the personal goals of individuals can
be met as far as possible. It is reassuring to see from the pilot work that patients and families
appreciated the information they were provided with so that they were aware of who to contact
should they have a problem once they were back at home. The results of this work show that
the assessments were comprehensive and very personalised. The pilot also tested out a
mechanism for alerting other health and care professionals who come into contact with patients
with lung cancer to the fact that an anticipatory care plan had been developed that could be
referred to so that individual wishes and needs were met appropriately.
The commitment of the Specialist Palliative Care Service to provide the best supportive care to
these patients is visible and demonstrates their professionalism to do the best they can for
patients in their care. I have no doubt that this care pathway will provide a model that is
potentially applicable to other patient groups and beyond the boundaries of Fife. On behalf of
NHS Fife, I would like to thank the team working with patients, families and the wider
stakeholders they have engaged for undertaking this project to produce this good work.
Dr Frances Elliot
Medical Director
Acknowledgement
The Fife Specialist Palliative Care Service would like to thank all of the patients, families and
carers who contributed so generously to the project evaluation. Their involvement was crucial in
helping us to understand what mattered most to people as we developed and refined the new
model of care. It has provided us with valuable insights into their thoughts, feelings and
experiences that will inform future service improvements, both in lung cancer and for other
patient groups, within and beyond Fife. Our interactions with patients and those closest to them
constantly remind us of the many reasons we are privileged to work in healthcare and we
extend our gratitude to them.
INDEX
Executive Summary 1
Background 6
Project Background 8
Project Aims 11
Baseline Evaluation 12
The New Model of Proactive Best Supportive Care 17
Project Findings 25
Discussion 42
Recommendations 48
Appendices 49
A. Glossary 49
B. Fife Specialist Palliative Care Service 51
C. Transforming Care After Treatment National Programme (TCAT) 52
D. Fife Council ICCC TCAT Phase 2 Project 53
E. Allied Health Professionals (AHP) Project 54
F. Demographic and clinical characteristics of all patients diagnosed
with lung cancer in Fife in 2012, and the ‘BSC from diagnosis’
subgroup
56
G. Example Personal Action Plan 57
H. Example Structured Letter 58
I. Health Economics 62
J. ICECAP measure 69
K. Lung Supportive Clinic Patient Experience Questionnaire 71
L. Reasons why 24/270 patients referred for the new model of care in
first 15 months were not assessed.
73
M. Basic demographic and clinical characteristics of ‘baseline’ and
‘new model of care’ patients who were for BSC from diagnosis
74
N. Details of acute hospital admissions for sample of patients who
were for BSC from diagnosis in 2012 and 2015/16, under new
model of care
75
O. Sample TCAT Newsletter 76
P. Members of steering group, operational group, evaluation group 77
References 82
1
EXECUTIVE SUMMARY
A Model of Proactive Best Supportive Care for Patients with Lung Cancer
Lung cancer is a disease with a particularly poor prognosis, with fewer than 10% of patients in
Scotland surviving 5 years from diagnosis.
In Fife around 40% of patients with lung cancer are unfit for anti-cancer treatment (surgery,
radiotherapy or chemotherapy) at the time of diagnosis, due to other serious illnesses, frailty or
the extent of spread of the cancer, and their treatment plan is best supportive care. Many more
move onto this care plan following palliative anti-cancer treatment, given with the intention of
improving quality of life, or following disease relapse.
However, prior to this project, there was no consensus amongst clinicians on what constituted
‘best supportive care’ or where and by whom it should be provided. The absence of a defined
clinical pathway led to inconsistencies and gaps in assessment and follow-up in primary and
secondary care. Patients and those important to them could be left feeling unsupported and
uncertain about how to access help. The opportunity for realistic goal setting and anticipatory
care planning could be missed, potentially leading to over-investigation and treatment as cancer
advanced. This could be distressing for patients and families and may also have been an
inappropriate use of healthcare resource.
The Development of a Model of Best Supportive Care in Fife
In 2013, Fife Specialist Palliative Care Service saw the opportunity to improve the care for
people with lung cancer through the Transforming Care After Treatment (TCAT) programme.
Following a successful bid, £322,622 over two years was awarded by Macmillan Cancer
Support Scotland, as part of the TCAT programme to develop and pilot a new model of care for
patients with lung cancer who were for best supportive care.
Assessment of Unmet Need
An analysis of the scale and nature of unmet need in Fife was undertaken prior to introducing
the new model of care. In 2012, 312 patients were diagnosed with lung cancer in Fife. Of these,
103 patients were for best supportive care from diagnosis and many more became for best
supportive care following palliative cancer treatment or disease relapse. Patients who were for
best supportive care were typically elderly, functionally poor and lived an average of 73 days.
They were at very high risk of acute hospital admission in the period between diagnosis and
death and almost half of patients died in the acute hospital.
The New Model of Care
A ‘Proactive Best Supportive Care’ pathway and framework, providing earlier and more
consistent palliative care, was developed by a range of stakeholders, led by Fife Specialist
Palliative Care.
All patients with lung cancer who were for best supportive care were identified immediately and
2
referred for a comprehensive palliative care assessment and personalised care planning. The
assessments were carried out promptly either at home, in the acute hospital or in a newly
developed outpatient clinic, depending on patients’ needs and preferences.
During the comprehensive palliative care assessment the patient, family and carer
understanding of the disease and best supportive care was explored. Physical symptoms,
psychological, spiritual, social and financial issues were assessed and management plans
agreed. When appropriate, anticipatory care planning and preferences for future care and
DNACPR were discussed and recorded. An immediate action plan was given to the patient
along with a lung cancer and palliative care service information pack. Referrals were made to
other services swiftly and secondary care clinic appointments cancelled when no longer
appropriate. The assessment was then recorded in a structured letter available to the wider
healthcare team on the Clinical Portal.
Additional specialist palliative medical and nursing resource in the community facilitated regular
support and timely assessments when patients deteriorated or their needs changed, increasing
the responsiveness of the service. An e-alert was generated if patients were admitted to the
acute hospital prompting palliative care review. Patients remained under follow up for as long as
they lived.
Strategic Drivers
Several relevant national and local strategy documents were published during the development
and implementation of the Fife TCAT Lung Cancer Project.
The Scottish Government’s Strategic Framework for Action on Palliative and End of Life
Care (December 2015) presents a vision that “By 2021, everyone in Scotland who needs
palliative care will have access to it”. In order to achieve this, the government has pledged to:
Improve the identification of people who may benefit from palliative and end of life care;
Offer people, their families and carers timely and focused conversations with
appropriately skilled professionals to plan their care and support, and to ensure this
accords with their needs and preferences;
Discuss and plan for future possible decline, preferably before a crisis, and support
people to retain independence for as long as possible;
Deliver health and social care that supports wellbeing irrespective of diagnosis, age,
socio-economic background, care setting or proximity to death;
Enable people to know how to help and support each other.
The Fife TCAT Lung Cancer Project addresses each one of these pledges and demonstrates
benefits to quality of care for people with lung cancer and those close to them.
The Scottish Government’s National Clinical Strategy for Scotland (February 2016) prioritises
improved quality of care, evidence-based practice to improve patient safety, clinical
effectiveness and patient-centred approaches. It also endorses self-management, encouraging
people and communities to support each other. The Fife TCAT Lung Cancer Project is aligned
with each of these priorities, and has generated local evidence of best practice that could be
applied far beyond lung cancer in Fife.
3
The Cancer Strategy Beating Cancer: Ambition and Action (March 2016) presents a broad
vision for diagnosis, treatment and care after cancer that incorporates person-centred, high
quality, equitable care. In specific terms, it acknowledges the need for palliative and end of life
care that is responsive to the changing preferences and priorities of people, and proposes that
all patients receive a treatment summary. The Fife TCAT Lung Cancer Project offers equitable,
high quality care that is proactive, responsive and empowers patients and families with
information and support.
Realistic Medicine, the Chief Medical Officer’s 2016 report, calls for a national debate about
the future of medical care in Scotland and proposes:
Reducing the burden and harm of medical interventions;
Engaging people in decision making about their care;
Encouraging clinicians to innovate to improve patient outcomes, for instance by
identifying inappropriate variation in practice.
The Fife TCAT Lung Cancer Project is wholly aligned with the principles outlined in Realistic
Medicine, with equitable access to the service for all, and individualised assessment, care
planning and follow-up.
Locally, as part of Health and Social Care Integration, Fife Health and Social Care Partnership
published their Strategic Plan for Fife (February 2016). The plan has four strategic priorities,
three of which are directly addressed by the Fife TCAT Lung Cancer Project. These are:
Prevention and early intervention;
Integrated and coordinated care;
Reducing inequalities.
Finally, the overarching theme of NHS Fife’s Clinical Strategy (October 2016) is patient-
centred care, including anticipatory care planning. There is a dedicated work stream for
palliative care and care in last days of life that is aligned to the national strategic framework for
action but more specifically references the TCAT Lung Cancer Project as an example of
innovative practice that can achieve both patient-centred and strategic goals.
4
Outcomes
NHS Fife now has a clear pathway for the identification and referral for Specialist Palliative
Care assessment and follow-up for all patients with lung cancer who are for best supportive
care. A total of 246 patients and their families and carers were supported by the new model
of care in the first 15 months.
Comprehensive palliative care assessments were conducted promptly, wherever the patient
was located. They always involved the opportunity to discuss the diagnosis and its
consequences in a sensitive and supported way.
Detailed letters based on the comprehensive palliative care assessments, including an
electronic Key Information Summary (eKIS) prompt for GPs and anticipatory care planning,
were available for all patients on the Clinical Portal within two days of assessment.
Patients, their families and carers were supported to take an active role in individualised goal
setting, care planning and coordination. Routine secondary care follow-up was no longer
needed for the vast majority of patients, and was superseded by individualised follow-up
based on patient location, needs and preferences.
Under the new model of care there was a 32% reduction in acute hospital bed days between
diagnosis and death for patients with lung cancer who were for best supportive care from
diagnosis.
Patients were significantly less likely to die in the acute hospital, and more likely to die in
their own home, the hospice, or a community hospital.
Resource use was reduced and a conservative estimate of the cost minimisation for a
subgroup of 99 patients was £417,261, for an investment of approximately £53,650.
Direct feedback from those supported by the new model of care:
Patients and families appreciated the potential to maintain independence afforded by
knowing where to access support when needed.
The process of care coordination was not directly visible to patients and families but the
quality of care it provided was deeply appreciated.
Direct feedback from health professionals:
High levels of commitment from health professionals to improve patient care led to systemic
change in practice.
The potential for further service development and delivery was clearly agreed.
5
Conclusions
Fife Specialist Palliative Care has developed and piloted a new model of Best Supportive Care
for patients with incurable lung cancer that is both proactive and consistent. Best supportive
care for this frail patient group should no longer be defined by its lack of anti-cancer treatment;
rather it should be defined by its commitment to timely and equitable access to supportive and
palliative care.
Additional resources will be required to continue and further develop this model of care. In
particular if the support is to be extended out-of-hours which was not possible within the scope
of the pilot project.
Not only is this new model of care much more in accord with a patient-centred approach
resulting in improved quality of care and experience, but there are also demonstrable cost
savings and efficiencies including reduced in-patient length of stay and avoidance of
unnecessary out-patient clinic attendances and investigations.
Whilst this project was specific to lung cancer the potential applicability to people with other
advanced malignancies, as well as non-cancer life-limiting conditions, is obvious.
Recommendations
Local
1. Resources should be sought to continue to develop and embed this new model of best
supportive care for patients with lung cancer in Fife. Further work will be required to fully
identify the additional or realigned resources required to embed this model for lung cancer
patients and extend to other patient groups.
2. The Palliative Care Management Team and the NHS Fife Palliative Care Group should
actively use the report’s findings to inform and shape future care provision for all patients for
whom a best supportive care approach is appropriate.
3. The full report should be actively disseminated to NHS Fife and Health and Social Care
Partnership strategic and clinical governance groups in order to reach all service areas
where patients may benefit from a palliative or best supportive care approach.
4. Opportunities to share the key findings of the report at educational events in order to embed,
develop and spread the learning should be sought.
National
5. The report describes a framework for best supportive care for patients with lung cancer and
establishes a new standard of care against which other services can be benchmarked. It
should be widely circulated and promoted to all NHS Boards and cancer networks to support
service improvement for patients with lung cancer, and also other life limiting illnesses.
6. The report should be used to inform future reviews of National Standards and Key
Performance Indicators in respect of cancer and palliative care, and in particular best
supportive care pathways.
6
Background
Best Supportive Care in Lung Cancer
Lung cancer is the most common cancer in Scotland and an incurable illness from diagnosis for
the majority. Around 30% of people with lung cancer will survive a year, and only 10% will
survive 5 years.1,2
The frailty of patients and the advanced nature of their lung cancer at diagnosis mean that
approximately 40% of patients in Fife are too unwell for active cancer treatment (surgery,
radiotherapy or chemotherapy alone or in combination).3 The treatment plan for these patients
is known as ‘best supportive care’ (BSC) from the outset. Another significant group of patients
move onto this care plan following palliative anti-cancer treatment, given with the intention of
improving quality of life, or after disease relapse.
However, there is no consensus on what constitutes ‘best supportive care’ or where or by whom
it should be provided.4 This lack of clarity can lead to patients and those important to them
feeling unsupported and unsure of how to seek help. The opportunity for realistic goal setting
and anticipatory care planning can be missed, potentially leading to over-investigation and
treatment as the cancer advances. Not only can this be distressing for patients and those
closest to them but it may also be an inappropriate use of healthcare resources.
Supportive and Palliative Care Needs of patients and those who care for
them
The incidence of lung cancer is higher in socioeconomically deprived populations and is
commonly associated with significant co-morbid illness and frailty.5 The combination of lung
cancer, co-morbidity and social deprivation often results in a high symptom burden;
considerable emotional, spiritual, practical and financial concerns and rapidly changing,
complex care needs.6
Families and carers see and share much of the patients’ experience of living and coping with
cancer. They may suffer social, psychological and spiritual distress, which can mirror that of the
person they are caring for.7 Cancer also imposes a significant financial and economic burden on
families, particularly on those who are already vulnerable.8 These factors can lead to carers
having significant support and information needs.
Nationally and internationally there is growing recognition that early supportive and palliative
care improves the experiences of patients living with incurable illnesses and those close to
them, as well as leading to more effective utilisation of health and social care resources.
In 2011 the National Institute for Health and Clinical Excellence (NICE) recommended that all
patients with lung cancer should have access to a specialist palliative care team and have their
treatment and management planned and directed by a multidisciplinary team.9 The evidence
Background
7
underpinning this guideline showed clearly that the involvement of palliative care teams resulted
in improved quality of life, improved symptom control and a reduction in hospital re-admissions
and inpatient bed days. In addition, patients and carers supported by palliative care teams were
shown to spend more time at home and to feel more satisfied with their care.
A landmark randomised controlled trial in North America of early, integrated palliative care in
patients with metastatic lung cancer demonstrated significant improvements in quality of life and
mood, and led to less aggressive care at the end of life.10
Unmet Need in Fife prior to the new model of care
Prior to the development of this project there was no clearly defined pathway of care for patients
in Fife with lung cancer for best supportive care.
Primary care health professionals, the key providers of general palliative care in the community,
reported feeling unsupported and under-resourced to provide the optimal care that their patients
with lung cancer needed. There was often uncertainty about what patients understood about
their illness and what they were expecting as their disease advanced. There was also
inconsistency in who was followed up in secondary care, leaving primary care teams feeling
more uncertain about who was providing care and support. As a result neither primary nor
secondary care offered consistent follow up based on patients’ specific needs and wishes.
The Patient Journey prior to the new model of care
Many, but not all, patients with incurable lung cancer were referred for specialist palliative care
prior to the new model of care being developed. This was usually triggered by overt complex
needs, whether physical, psychological, social or spiritual. Referrals were often made in the
midst of a crisis or close to death, limiting the scope and benefit of support for patients, their
carers and families.
Although the vulnerability and frailty of patients with advanced lung cancer was well recognised,
there were inconsistencies and gaps in the care and support that was provided across care
settings. Health, social care and third sector providers were often “out of the loop” or struggling
to “catch up” to meet rapidly changing needs of patients.
If somebody had explained to us, not necessarily what was going to happen, but what was available to us. You just felt... into the abyss.
(Carer)
(Patient)
Fife has a fully integrated NHS-funded Specialist Palliative Care
Service offering hospice in-patients beds, day hospice, a community
specialist palliative care team and a hospital palliative care team. They
offer advice, consultancy and support for people in their own homes,
care homes, community hospitals and in the acute hospital. In addition,
they provide clinical leadership, education and support for health and
social care professionals in all of these settings (See Appendix B)
8
Project Background
In 2013 the Fife Specialist Palliative Care Service saw an opportunity to improve the care for
people with lung cancer through the Transforming Care After Treatment Programme (see
Appendix C).
Following a successful bid, £322,622 over two years was awarded by Macmillan Cancer
Support Scotland to develop and pilot a new model of care for patients with lung cancer who
were for ‘best supportive care’.
Stakeholder Involvement
The initial proposal was developed by Specialist Palliative Care with strong support and
commitment from the respiratory team and lung cancer oncologist in Fife. Following this, a
multiagency steering group of professional and lay stakeholders was established to develop the
new model of care (see Appendix P).
Membership of the multiagency steering group included representatives from:
Primary and secondary healthcare
Fife Council
South East Scotland Cancer Network (SCAN)
Macmillan Cancer Support
Maggie’s Centre
Move More Fife
Previous service user (carer representative)
Project Funding
The funding received from Macmillan Cancer Support enabled several additional staff to be
employed for the duration of the pilot project.
Project Management
Project lead, consultant palliative medicine: 4 hours/week
Evaluation lead, consultant palliative medicine: 2 hours/week
Project lead nurse: 15 hours/week
Project administrator: 30 hours/week
Project Background
9
Clinical Team
Additional palliative care clinical staff were employed for the duration of the project. However,
despite this additional resource the existing specialist palliative care team (see Appendix B)
carried out most of the extra clinical activity resulting from the project.
Senior palliative medicine doctor (consultant and associate specialist): 24 hours/week
Specialist palliative care nurse: 22.5 hours/week
Related Projects
Three other TCAT projects in Fife, with direct links to the lung cancer project, were also
awarded funding.
1. Fife Council’s TCAT Phase 2 project, “Integrated Community Cancer Care” (ICCC)
aiming to test the role of the Local Area Co-ordinator (LAC) role within an integrated
cancer pathway. The LACs help people affected by cancer deal with the physical,
financial and emotional impact of a cancer diagnosis by supporting them to get the right
information, access services and support in their local community (see Appendix D).
2. Allied health professional (AHP) involvement is an important element of responsive,
patient centred, holistic care. A successful bid for additional Scottish Government money
secured £38,227 to implement an AHP project to run alongside and support the aims of
the Fife TCAT lung cancer project. The aim of the AHP project was to ensure that all
patients with lung cancer identified as requiring best supportive care had timely access to
appropriate AHP interventions (see Appendix E).
3. NHS Fife Dermatology Service was also successful in obtaining TCAT Phase 1 funding
for a project to improve the care of patients with melanoma.
As the Fife TCAT projects became established it was recognised that there were significant
benefits to be gained by amalgamating the steering groups of the TCAT lung cancer project,
TCAT melanoma project and Fife Council’s Phase 2 project in order to facilitate integrated
strategic planning and avoid duplication of effort.
Project Background
10
Project Milestones
11
The Project Aims
The project proposal was informed by local expertise and evidence, and was supported by
national and international evidence of unmet needs in patients with lung cancer and of the wide-
ranging benefits of proactive palliative care intervention.
Overall Aim of the Project
Project Objectives
To develop a risk stratified pathway of care for patients with lung cancer with the patient
at the heart of the decision making process.
To provide earlier, more proactive palliative care which promotes self-management,
patient and carer involvement and choice.
To provide rapid responsive palliative care when problems or urgent issues arise.
To improve care coordination between different service providers, including social work
and the third sector.
To reduce the numbers of patients with advanced lung cancer being followed up in
secondary care clinics.
To decrease the number of unplanned admissions to acute beds.
To develop and test a model of care which could be extended to all patients with
advanced cancer for “best supportive care” or who have recurrent incurable disease.
To develop and pilot a model of care for patients with lung cancer
who are for ‘best supportive care’.
12
Baseline Evaluation
Describing the situation prior to the new model of care
An analysis of the scale and the nature of unmet need in Fife was undertaken before the
development and implementation of the new model of care. This included an in-depth analysis
of a subgroup of patients for best supportive care from diagnosis. The baseline evaluation
served two main functions:
1. To inform the evolving model of care.
2. To enable comparisons to be drawn between experiences and outcomes for
patients prior to and following the new model of care.
A number of data collection methods and sources were employed:
Table 1. Baseline Evaluation data sources
Data Source Data Details
Clinical Data
South East Scotland Cancer Audit Network (SCAN) lung cancer dataset
Data extracted for a 12 month cohort of patients diagnosed with lung cancer in Fife in 2012. Demographic and clinical data e.g. age, gender, date of cancer diagnosis and cancer type and stage.
A subgroup of patients from 2012 who were for BSC from diagnosis (n=103) was identified for future comparison.
NHS Fife electronic patient records
Demographic and clinical data gathered for 12 month 103 patient cohort from 2012 e.g. hospital admission details and place of death.
NHS Fife Specialist Palliative Care Database
Details of specialist palliative care service involvement for 12 month 103 patient cohort from 2012 e.g. date of referral to service in relation to lung cancer diagnosis.
Interview Data
Prior to new model of care, patient and carer interviews, 2014
Patients with advanced lung cancer and their families/carers who were supported by the Fife Specialist Palliative Care Service prior to the new model of care being introduced.
Person-centred, two question approach: ‘Since diagnosis, ‘What have we got right for you?’ and ‘What could we have done differently?’
Seven patients interviewed (five had carers present, one was a telephone interview)
Prior to new model of care, health professional interviews, 2014
Health professionals (primary and secondary care) who routinely cared for patients with advanced lung cancer were invited for interview.
Questions were tailored to their professional role and explored their experiences, views and concerns.
Two GPs, a lung oncologist and a lung cancer clinical nurse specialist were interviewed.
Baseline Evaluation
13
Describing the population
312 patients were diagnosed with lung cancer in Fife in 2012 (see Appendix F). 103/312
patients (33%) were in the ‘best supportive care’ (BSC) from diagnosis’ category, with no
planned oncological treatment. This group was typically:
Elderly
With advanced cancer
Physically frail (‘poor performance status’)
Approaching the end of life. Average (median) survival for these patients was only 73
days from diagnosis.
Follow-up after diagnosis prior to the new model of care
Follow-up was inconsistent for patients who were newly diagnosed with lung cancer and were
for BSC. A minority of these patients attended secondary care clinics following their diagnosis in
Fife in 2012.
17% of patients (n=18/103) were seen in an oncology clinic
61% of patients (n=63/103) attended no secondary care clinics at all
Based on performance status data from the time of diagnosis, it is likely that the majority of
patients were simply unfit to attend hospital outpatient appointments.
Assessment and follow-up by Fife Specialist Palliative Care was also inconsistent. Referrals
were usually made to the service in response to overt clinical needs, sometimes very near the
end of life when patients were deteriorating quickly.
In 2012, prior to the new model of care:
76% (n=78/103) of patients who were for BSC from diagnosis were referred to Fife
specialist palliative care.
However only 57% (59/103) patients who were for BSC from diagnosis were assessed by
specialist palliative care, either in person (n=52) or by telephone (n=7). The main reason
why patients who were referred for assessment did not receive input was because they
had already died.
31% (16/52) of patients’ first assessments by specialist palliative care were made within
their last 28 days of life.
21% (11/52) of patients’ first assessments were in their last 14 days of life.
Baseline Evaluation
14
Following the diagnosis of lung cancer patients were not necessarily expecting secondary care
follow-up and could recognise that attending clinic appointments may not be particularly
meaningful if adequate care for physical problems was available within primary care.
However, where patients were not well known to a primary care team, or referred for specialist
palliative care follow-up, they expressed uncertainty about who was following them up and what
support they could expect.
Care coordination is underpinned by open communication between patients and their families,
patients and healthcare professionals, and within and between health, social care and third
sector teams. Information sharing is vital to improving that coordination.
Acute hospital admissions prior to the new model of care
In Fife in 2012, patients with a new diagnosis of lung cancer who were for BSC were at high risk of acute hospital admission.
83% of patients (n=86/103) had acute hospital admissions between their lung cancer
diagnosis and death.
The average (mean) bed days per acute hospital admission was 9.99 and the total
number of bed days for the 86 patients was 1079.
Unpredictable co-morbidities, acute episodes of pain or other symptoms and precarious social
circumstances were common scenarios. A lack of ‘out of hours’ support for patients with lung
cancer, and their families, was commonly mentioned by professionals involved prior to the new
model of care:
The consultant does ’nae really want to see me again, there’s nothing else they can do. It’s just another run to [clinic] for a five minute chat and that’s it. So there’s not much point.
(Patient)
There was nothing more the Oncologist could do so we were referred back to GP, but we had no other support after the oncology department. We asked if [name of GP] could take on the case personally because we had got to know him a bit, and he said yes, which was good, but then they found that, as they put it [patient’s name] ‘had slipped under the radar’, because we had no other support, no district nurses, nobody was coming and saying ‘well you can do this, you can get that’… somehow we just disappeared.
(Carer)
I think the gap is that either these patients need to be encouraged to keep regular communication with us so we can keep an overview of it, or Oncology and palliative care perhaps liaising better to acknowledge when things are not going so well and allow for that intervention a bit earlier.
(GP)
Baseline Evaluation
15
Whilst there was acceptance amongst professionals that some admissions were inevitable there
was also recognition that some may be preventable with earlier palliative care involvement.
Place of death prior to the new model of care
The most common location for end of life care for patients who were for BSC from diagnosis in
2012 was the acute hospital.
Dying in an acute hospital may have been unavoidable for some patients, and for some it may
have been the most appropriate place for their care to be delivered. However, it must be
questioned whether it is the optimal setting to deliver end of life care for the majority.
…very often at the weekends when there is limited staff around and you can’t access GPs and a lot of patients don’t like to go through NHS24, and you know they’re frightened at home at the weekend and feeling abandoned and you notice that… many are coming in at the weekends.
(Lung Cancer Specialist Nurse)
We shouldn’t be selling to patients, and the consultants shouldn’t be selling to patients, that palliative care means there’s nothing else, you know “That’s you, you’re now for the scrapheap. Let’s give you drugs and let you pass away.”…I think palliative care as a specialty is wonderful at symptom control which is important at a lot of stages of the illness, but the preparation that the families need psychologically, and that the patient needs psychologically, you know “We may be heading towards this being terminal, lets prepare for that even if it’s not imminent” I think…with that early engagement, we’ll get rid of some of these catastrophic events that happen.
(GP)
Baseline Evaluation
16
Summary of Findings from Baseline Evaluation, prior to the new model of care:
Patients who were for best supportive care were typically elderly, functionally
poor and lived an average of 73 days from diagnosis.
Patients, families and carers expressed uncertainty about who was following
them up and what they could expect.
The majority of patients who were for BSC did not attend secondary care
follow-up after their diagnosis.
57% of patients were assessed by Fife Specialist Palliative Care before they
died, but the timing of referral was inconsistent. Referral for specialist palliative
care was reactive rather than proactive, and was often close to death.
Patients who were for BSC were at very high risk of acute hospital admission in
the period between diagnosis and death. Almost half of patients for BSC died in
the acute hospital.
Professionals recognised the need for a clear pathway for patients who are for
BSC and for improved communication between services.
It’s not a particularly good place to administer palliative care. Hopefully these patients are in the minority but if we can intervene and reduce that group then that will make a huge impact on some people’s lives and that’s what we would hope to do.
(GP)
17
The New Model of Proactive Best Supportive Care
Fife Specialist Palliative Care had extensive experience of supporting patients with lung cancer
prior to the project. Furthermore, there is an established evidence base for the unmet supportive
and palliative care needs of patients with advanced lung cancer. This experience and evidence,
along with the baseline evaluation findings, informed key decisions in the development of the
new model of care.
The new model of care was developed around the following framework:
Robust identification of patients
Comprehensive palliative care assessment and care planning
Care coordination and follow-up
Patient Journey to Lung Cancer Multidisciplinary Meeting (MDM) For patients and their families, the journey to diagnosis commonly begins long before the
multidisciplinary meeting.
The New Model of Care
18
The section that follows provides details of the new model of care that was developed, and
insight into the decision making process behind the framework.
Robust Identification of Patients
The typically short prognosis, high prevalence of physical symptoms, the propensity to rapid
deterioration and high risk of acute hospital admissions led to the decision that all patients
would be offered the new model of care.11
Further justification for this decision was the recognition that specialist palliative care is not
accessed equitably by people who are socioeconomically deprived, elderly or in ethnic
minorities.12
Patients, for whom the treatment plan was BSC at diagnosis, were identified by the lung cancer
team, including a senior palliative medicine doctor, at the weekly multidisciplinary meeting
(MDM) at the Victoria Hospital, Kirkcaldy. They were then contacted within 24-hours and offered
an initial comprehensive palliative care assessment.
Patients who had completed palliative anti-cancer treatment or who had recurrent or
progressive lung cancer and were now for BSC were also eligible for the new model of care and
were identified and referred to the specialist palliative care team by their general practitioners,
oncology or respiratory teams.
Occasionally people with a new diagnosis of lung cancer were referred for the new model of
care before the MDM discussion as it was anticipated that their treatment plan would be best
supportive care.
Patients who were still undergoing anti-cancer treatment were not the target population for this
project but had access to the pre-existing model of specialist palliative care.
Lung Cancer Multidisciplinary Meeting (MDM)
The multidisciplinary team (MDT) includes respiratory physicians, lung
cancer oncologist, radiologist, pathologist, cardiothoracic surgeon, palliative
medicine doctor and lung cancer specialist nurses.
The patient’s symptoms and results of investigations are discussed and
reviewed, the diagnosis, type and stage of lung cancer confirmed and a
potential treatment plan suggested. A member of the team agrees to follow
the patient up to discuss the diagnosis, stage of the disease and treatment
options.
All patients with lung cancer for BSC were identified and
offered the new model of care.
19
The New Model of Proactive Best Supportive Care
The New Model of Care
20
Comprehensive Palliative Care Assessment and Care Planning
Comprehensive palliative care assessment and initial care planning were
conducted promptly after the decision for best supportive care, and for many
patients involved confirmation of the lung cancer diagnosis.
Prior to the new model of care, assessment, information sharing and discussion around the lung
cancer diagnosis and future care planning usually occurred over several appointments with
different health professionals. At times patients were too frail to attend outpatient clinics and it
was not always clear if the diagnosis and its implications had been discussed with them, their
families and carers. The decision was made to integrate much of this activity into a single
assessment, the starting point being the patient’s understanding of the diagnosis and best
supportive care. Timely first assessments were important to minimise the period of uncertainty
and gap in care previously experienced by some patients, and because of the typically short
prognosis and the potential for rapidly changing needs.
Comprehensive palliative care assessments were conducted in all settings
in primary and secondary care. Assessments were conducted in patients’
homes, acute hospital wards, nursing homes and a new outpatient clinic.
The baseline evaluation revealed that a high proportion of patients with a new diagnosis of lung
cancer, or with cancer that had progressed, were not fit to attend secondary care outpatient
appointments. Furthermore, it is well recognised that lung cancer diagnoses are commonly
made in acute hospital inpatients, many of whom will die on that admission.13 For these reasons
a flexible approach to the location of the comprehensive palliative care assessment was taken,
dictated by patient location, frailty and preference. This was possible as the palliative care team
in Fife is integrated across primary and secondary care. A new lung supportive clinic was
established in the Victoria Hospital in Kirkcaldy as it was thought that clinic assessment might
be more acceptable to those who were fit enough to travel and had not had confirmation of their
diagnosis or treatment options. Patients living in North East Fife were always assessed at home
to avoid excess travel.
The New Model of Care
21
Active engagement with patients, families and carers was fundamental to the
comprehensive palliative care assessment. Working collaboratively with
patients and those close to them is central to a palliative care approach.
All assessments were individualised, based on patient, carer and family needs and preferences.
The discussion areas covered in the first meeting depended on patient factors such as fatigue,
their understanding of their illness and preferences for receiving and sharing information.
Equally if the person’s condition and needs were obviously changing rapidly the assessment
was adjusted to address this urgency. Self-management was promoted by improving patient
and carer understanding of the illness, what the future might hold and the support and
resources available.
The initial assessment was usually undertaken by a senior palliative medicine doctor and
specialist nurse.
The key elements of the initial assessment and immediate care planning typically included:
Exploration of patient and family understanding of illness and best supportive care,
opportunity for discussion and questions to be answered.
Assessment of physical symptoms, psychological and spiritual issues, including distress
at the diagnosis. Issues addressed and management plans made. Where required,
prescriptions issued in clinic or requested through the GP.
Anticipatory care planning initiated if patient willing and able, including their wishes and
preferences for type of care, place of care, place of death and DNACPR.
Permission from the patient for the GP to complete or update the electronic Key
Information Summary (eKIS) with key messages from the assessment.
Direct referral for all patients to community specialist palliative care if seen in clinic or
hospital ward, or plans made for ongoing review if seen at home. Ensuring that patients,
families and carers had contact details for their named specialist nurse.
An information pack about Fife Specialist Palliative Care Service, lung cancer (Roy
Castle pack), Fife Maggie’s Centre.
Appropriate referrals to community or hospital allied health professionals depending on
patient location (including occupational therapy, dietetics etc), Macmillan benefits,
homecare, or other agencies.
Signposting to other sources of support and information.
Personal action plan given to patient (see Appendix G).
Letter dictated to GP and other professionals involved (see Appendix H).
The New Model of Care
22
Care Coordination and Follow Up
All patients with lung cancer for BSC were offered follow-up until the end of life.
Following the initial assessment, patients remained under the care of their general
practitioner but were also followed up by the specialist palliative care team.
Complex journeys through the healthcare system, with numerous admissions and transfers of
care, are common in lung cancer. Follow up was therefore individualised and aimed to be
responsive to the patient’s needs and location.
Before the new model of care, patients without overt specialist palliative care needs were
discharged from follow-up. For the duration of the pilot of the new model of care it was decided
that patients with lung cancer for BSC would not be discharged. This was justified by the
typically short prognosis, potential for rapidly changing needs and high risk of acute hospital
admissions.
Subsequent patient reviews built on the initial assessment and included:
Further exploration of the patient and family understanding of the illness, BSC and
opportunity to discuss any other questions or concerns.
Monitoring and management of physical, psychological, social, financial and spiritual
issues.
Ongoing anticipatory care planning conversations.
Further relevant community referrals and signposting as patient needs changed.
Integrated Multi-Professional Care
In order to meet the multidimensional needs of patients with advanced lung cancer and those
important to them multidisciplinary input to their care is essential. Allied health professionals
(AHPs, including occupational therapists, physiotherapists, dieticians, and speech and language
therapists), counsellors and chaplaincy were key members of the team, alongside doctors and
nurses.
Two related TCAT projects introduced during the development augmented this multi-
professional approach. The TCAT Lung Cancer Allied Health Professionals project was
developed to offer people in the acute hospital setting additional AHP support (see Appendix E).
Fife Council’s TCAT Integrated Community Cancer Care Project developed a Local Area Co-
ordinator role to offer support to all people in Fife with a cancer diagnosis and those important to
them (see Appendix D).
Clear, timely communication between Specialist Palliative Care, primary and
secondary health care and social care teams was a priority under the new
model of care.
Care coordination was underpinned by open, timely and sensitive communication between
patients and their families, patients and healthcare professionals, and within and between
The New Model of Care
23
health, social care and third sector teams. Information sharing across different services played a
vital part in improving care coordination, minimising duplication and facilitating further timely and
sensitive conversations with other health and social care teams as the patient’s condition
deteriorated.
Information sharing involved:
Structured letters detailing assessments
Under the new model of care, a detailed and structured letter was dictated and sent to the GP
promptly after the initial comprehensive palliative care assessment (see Appendix H). The letter
included significant information from the assessment and any actions required by the GP, such
as the completion of an eKIS. The letter was copied to relevant healthcare professionals and
was accessible via the patient’s NHS Fife electronic medical record on the Clinical Portal. The
structured letters and e-alerts facilitated multi-professional care by indicating the urgency of
patient need, improving communication and enabling assessments and conversations to
continue across settings and disciplines without duplication.
The palliative care occupational therapists (OTs) in the acute hospital played a key role in
enabling safe discharge from hospital for this frail and unstable patient group by ensuring
effective care coordination with the relevant community services. As part of the related TCAT
Lung Cancer Allied Health Professionals project (Appendix E), OTs in the acute setting
developed an end of care summary. This appeared on the patient electronic record and is being
developed as a referral to the community social work OT team to improve care coordination and
reduce duplication of work.
Acute hospital electronic–alert
At the point of first referral for the new model of care, an e-alert was placed on each person’s
electronic health record. If they were subsequently admitted to hospital the e-alert informed
ward staff that they were part of the TCAT Lung Cancer project with a request to notify the
specialist palliative care team. An email alert was also sent to specialist palliative care 24-hours
later (delay due to limitation of the technology). This enabled early review of admitted patients
by a palliative medicine specialist, and often occupational therapist and dietician, to optimise
management plans, support realistic goal setting and ensure that the patient’s wishes were
known. In addition to the impact on individual patient care, the e-alert also provided an
opportunity to identify the reasons for hospital admission and potential ways of preventing
inappropriate admissions in the future.
Electronic Key Information Summary(eKIS)
Every patient was asked at their initial comprehensive palliative care assessment for permission
for the GP to complete or update the eKIS.
Pilot of Integrated Portal
As part of Health and Social Care Integration an electronic portal, Orion Portal, was piloted for
8-weeks to improve information sharing between health and social care. NHS Fife TCAT lung
cancer team and a member of Fife Council’s TCAT project were able to enrol patients in the
pilot and contributed to the evaluation.
The New Model of Care
24
The new model of care was responsive as patients’ needs changed.
Providing high quality and responsive care in working hours is complex. It is even more of a
challenge out of hours, with a high risk of acute hospital admission for patients who become
unwell overnight or at weekends, even where this would not be their preference.
Some additional community specialist palliative care nursing and medical resource was
allocated under the new model of care with a view to offering a more responsive service as
patients’ needs changed. A weekend helpline for patients and families was piloted to evaluate
the impact of additional telephone support on decision making at weekends. The helpline was
staffed by community specialist palliative care nurses between 9am-1pm on Saturdays and
Sundays.
Ongoing Development of the New Model of Care
There was an understanding from the outset that the new model of care would require ongoing
assessment and refinement informed by an improved understanding of the needs of patients
and those close to them, and of the complex health and social care systems involved.
An example of a significant refinement was the recognition that patients who became for best
supportive care following palliative cancer treatment or disease relapse had comparable needs
to patients who were for BSC from diagnosis. As the project became embedded in routine
practice the numbers of patients referred who had completed a course of treatment prior to
being for BSC increased.
25
Project Findings
The section that follows first describes the evaluation methodology and then presents a range of
outcome data, incorporating direct feedback from a range of service users and professionals.
Thereafter, an overview of the health economic evaluation of the new model of care is provided,
along with key findings from the analysis. Finally, an innovative tool for evaluating patient
wellbeing in the context of advanced illness is introduced (the ICECAP measure) and findings
from this are presented.
Evaluation Methodology
A mixed-methods evaluation of the new model of care was undertaken, reflecting the complexity
of the intervention and the spectrum of intended outcomes. The evaluation aimed to explore the
meanings made by patients and those close to them as they moved through the healthcare
system and to make some analysis of the impact of the new model of care. Impact
encompassed both:
Quality of care and experience for patients, their families and carers
Healthcare resource use
Data was gathered from a variety of sources (see below). Qualitative data was intended to be
illustrative in order to allow patients, families, carers and professionals to define what was
important from their perspective.
Table 2. New Model of Care Evaluation data sources
Data source Data details
Clinical data
Customised clinical database of all patients with lung cancer for BSC referred for the new model of care from January 21st 2015. Data obtained from sources including NHS Fife electronic patient records and clinical patient assessments.
Extensive demographic and clinical data gathered prospectively on all patients referred e.g. age, gender, date of referral, date seen by specialist palliative care service, details of acute hospital admissions and date and place of death. Data presented from first 15 months of new care model (270 patients), with a 12 month sample (patients for BSC from diagnosis, n=99) identified to compare to 2012 data.
Interview and focus group data
Specialist Palliative Care Nurse interviews 2015
Five months into the project, two community specialist palliative care nurses involved in delivering the new model of care were interviewed. Their concerns and any challenges were fed back to the project team in order to ensure learning.
Patient and carer interviews, 2015-16
Patients with advanced lung cancer who were for BSC and their families/carers. All patients had experienced the new model of care.
Project Findings
26
Two question approach “Since diagnosis what have we got right for you?” and “What could we have done differently?” supplemented with ICECAP questionnaire (see Appendix J). 12 patients interviewed (five with carers).
Bereaved carer interviews 2016
Follow-up interviews with carers of ‘new model of care’ patients who had previously been interviewed. Two-question approach used with additional questions exploring emotional and economic impact on family and informal carers. Two bereaved carers interviewed.
Health professional focus group 2016
Two-question approach employed with professionals involved in new model of care to frame the focus group. Themes evolved naturally, with occasional prompts. Eight focus group attendees including two palliative medicine doctors, a lung supportive clinic nurse, a hospice senior charge nurse, two community specialist palliative care nurses, a lung cancer clinical nurse specialist and an allied health professional working in specialist palliative care.
Health professional interview 2016
Follow-up interview with a lung oncologist. Two-question approach employed. Encouraged to talk about experiences, views and concerns.
Lung Supportive Clinic patient experience questionnaire 2016
12 question questionnaire on BSC clinic/home visit experience (see Appendix K). Nine completed questionnaires, one by telephone.
Palliative medical consultant assessment of contributing factors for acute hospital admissions for patients known to the TCAT team 2015-16
Patients admitted to acute hospital were identified at least 24-hours later by e-alert and reviewed by Consultant in Palliative Medicine. A clinical judgement was recorded whether admission was related to underlying cancer diagnosis or not, and whether presenting issues required hospital admission or hospital could have been avoided if other support, such as increased care at home, had been available.
Project Findings
27
Patient population
The new model of care was introduced on January 21st 2015. Over the first 15 months of the
project:
270 patients with incurable lung cancer were referred to the Fife Specialist Palliative
Care Service for the new model of care.
Patients were typically elderly, average (median) age 74, economically inactive and
socially deprived. See below.
Table 3. Basic demographics of 270 patients referred to the new model of care over the
first 15 months of the project
Percentage (Number)
Gender Female Male
47.4% (128) 52.6% (142)
Age Median (IQR) Under 65 years Over 65 years
74 (69-82) 15.9% (43) 84.1% (227)
SIMD quintiles* 1 (most deprived) 2 3 4 5 (least deprived)
31.1% (84) 24.1% (65) 17.8% (48) 16.7% (45) 10.3% (28)
Employment status** Employed Retired or unemployed
2.2% (5) 98% (245)
*SIMD: see Glossary **Employment data not available for 20 patients
Referral route into the new model of care
48% (130) patients were for best supportive care (BSC) from the point of diagnosis with
lung cancer. For this patient group, the new model of care offered their first formal
healthcare contact following the lung cancer MDM confirmation of their diagnosis.
52% (140) patients were referred for the new model of care following completion of
palliative cancer treatment or disease relapse, when their oncology team took the
decision that no further anti-cancer treatment was possible.
91% (246) patients referred were supported by the new model of care. The main reason
patients were not assessed and supported after referral was that they had died (15/24
patients). See Appendix L for additional reasons.
Subgroup of Patients for in-depth analysis
A subgroup of 99 patients who were for BSC from diagnosis (referred over a 12 month
period) was studied in more depth for evaluation purposes. Outcomes for this group were
to be compared to a similar patient cohort from 2012. See Appendix M for comparison of
demographic and clinical characteristics of the 2012 and 2015/16 patient subgroups.
Project Findings
28
Outcomes of the New Model of Care
Robust identification of patients
A robust pathway of identification of patients was implemented and tested. Identification
was pre-emptive (i.e. before overt palliative care needs were identified) and included
patients who were for BSC at diagnosis and those who moved into BSC following
oncological treatment or disease relapse. The identification of patients based on ‘best
supportive care’ status ensured equitable access to support, irrespective of socioeconomic
background, age, gender and ethnicity.
One patient, who had one cycle of chemotherapy but quickly became for BSC, shared their
experience of transition.
Referral for proactive BSC from Oncology relied upon some level of acceptance and
understanding by the patient of the untreatable nature of their lung cancer. One patient who
had had some prior cancer treatment commented on making the transition to the lung
supportive clinic:
Patient: I’ve been happy with everything the only thing, and it’s nothing to dae wi’
that clinic, was when [name of Oncologist] said, em, “Well, I won’t be seeing you
again”. And I thought “Eh? I have still got cancer why are you no seeing me
again?”
Interviewer: It was a wee bit final for you?
As far as I’m concerned it’s been a real bonus to me and
my practice because I know that those patients who are
not coming my way, or have been my way are going to
get rapid, or fairly rapid intervention, and I know that that
intervention from the TCAT team is going to be pretty
comprehensive and I know that the communication after
that is excellent. So the information that is dispersed
following that clinic, to me and to everybody else, is very
good, so I think everyone is aware of what’s going on
and it makes it very clear.
(Lung Oncologist)
Once I got my diagnosis and got my first treatment, then
they realised it wasn’ae for me. Then the palliative care
came and my own doctor, both working hand in hand and
it’s been excellent. I couldn’ae praise them highly
enough. They explained quite a lot about… not so much
about what was going to happen you know, but the
reasons for some things happening.
(Patient)
Project Findings
29
Patient: Yes (tearful)…Ah dinnae ken why ahm greetin’ ‘cos I am aw’right wi’ it. But
at first when she said that, and I came oot the clinic and I says to my daughter
“What does she mean?” She says “Ye dinnae have to go back mum” and that sort
of took me. I felt a bit oot on a limb then. She said aboot that lady…in the
supportive clinic, and she did say “it’s a new thing that’s started, and I think we’ll
maybe send you to her” and I thought “well why are ye sending me there fir?” So,
when I went to see the girl, then I understood what is was all aboot, yeah, she was
very, very nice, very, very nice and she explained and took time wi’ ye. That is a lot
to do with some things that there’s problems with eh? You know, I have been at
doctors and thought, I have come oot of there and thought, “what wis that all
aboot?” But she explained, she was a bit like [name of Oncologist], they explain
everything eh? Em, I wouldn’a have their jobs, mind you. I mean they must see
some from all walks of life eh? Me, for a start (both laugh). But em, no, as I say, if
it’s a new system that’s starting up, I think it’s quite a good thing, it made me feel
better anywi’ because I felt I still had a connection someplace em, no that you want
to be ill but you still had that support.
Comprehensive palliative care assessment and planning
All patients with lung cancer in Fife who were for BSC were referred for a comprehensive
assessment and care planning with Specialist Palliative Care. 91% of patients who were for
BSC from diagnosis were assessed, either in person (n=87) or by telephone (n=4) (see
Appendix L for reasons for no assessment). This contrasts with the situation prior to the new
model of care, when 76% of patients were referred and only 57% were assessed, as some
patients had already died.
Patients were referred promptly as soon as the decision ‘for BSC’ was made and were seen
quickly thereafter. Under the new model of care, the average (median) time to referral
following the lung cancer MDM was 0 days. This compares to an average (median) of 8
days in 2012.
Palliative care assessments took place wherever patients were located.
Patients may assume that they have to go into hospital to be assessed and one patient was
relieved that she could be reviewed at home.
I had to go into the hospital, but...I was always sore. Really sore. But I didn't ask them for to come....They said “Yes [patient’s name], you’re not able for to go. Just ask them to see if they would come to see you”. “Well” I said, “that’s good then”.
(Patient)
Project Findings
30
All patients participating in a comprehensive palliative care assessment had the
opportunity to discuss their diagnosis and its implications in a sensitive and supported
way. Discussions that followed involved assessment of patients’ and carers’ current
needs (physical, psychological, practical, spiritual) and consideration of future needs and
preferences.
Patients shared evident appreciation about openness and sensitivity to their individual
information needs and preferences.
Lung Supportive Clinic feedback
Nine patients completed feedback questionnaires about their experience of the Lung
Supportive Clinic (Appendix K). These were patients who were fit enough to attend a
clinic, rather than be seen at home or in an acute hospital ward for their first palliative
care assessment. All felt that they had ‘just enough time’ with the palliative care
consultant and were able to discuss their concerns. All first assessments took between
30 and 60 minutes, with two-thirds taking an hour.
Time was of no importance to them. There was no rush to get me out the door.
(Patient)
I’m just pleased that they’ve took the time and I think this is a good thing if you compare eh? Cos I think people that have been left to fudge about in their own way well your mind fills with nonsense. I’ve never had that – if I asked I got told and I believe in that. Cos it’s a strange thing dying, well you’ve never done it before but some people dinnae want to know, but I want to know, and I think I’ve got every answer and I’ve no great fear for myself.
(Patient)
Project Findings
31
All patients stated that their condition was explained to them in a way that they could
understand.
Patients reported that their relatives also received valuable support.
Care coordination and follow-up
Reliable written communication with primary and secondary care
Detailed letters based on patients’ comprehensive palliative care assessments were
made available within 2 days of assessment on the NHS Fife Clinical Portal. These
include an eKIS prompt to patients’ GPs, and where relevant, details of DNACPR
discussion.
Individualised care planning
Care planning and follow-up for all patients with lung cancer for BSC was individualised.
Routine secondary care appointments were cancelled and plans for follow-up were
informed by patient location, frailty and preferences.
o None of the 99 patients who were for BSC from diagnosis in 2015/16 attended a
routine Oncology or Respiratory Medicine clinic following their MDM lung cancer
diagnosis. This was in contrast to 2012 where 40/103 patients (39%) attended a
secondary care clinic.
Under the new model of care, many patients had unnecessary outpatient appointments
cancelled. 67 secondary care appointments were cancelled for the subgroup of 99
patients who were for BSC from diagnosis in 2015/16. For one patient this included pre-
Not only did they explain it to me very clearly, but also listened to what I had to say which made me feel a lot better.
(Patient)
Both (Name of TCAT consultant) and (Name of TCAT nurse) not only listened but took notes about what I had to say. Everything they said they would put in place happened, with my GP, District Nurse, home visits with palliative care.
(Patient)
My partner was with me during the consultation and (Name of TCAT consultant) and (Name of TCAT nurse) answered all her questions as well, and gave her peace of mind as well as me.
(Patient)
Project Findings
32
operative assessment for major surgery that was no longer appropriate given her
advanced lung cancer diagnosis.
Before patients, carers and families could be involved in realistic care planning, there had to be
openness about the diagnosis and the likely course of the illness. Once individuals and families
were as informed as they wished to be, they were often able to mobilise their own sources of
support both within and out with their family units.
Many patients identified the importance of the family unit as central to providing care, but this
was generally with the recognition that support from health and social care was also essential.
Despite apparent physical frailty, patients often prioritised their independence. Patients were
supported to make active choices, which could include refusing help.
Some patients did not want or need to use support but were reassured that it was available if
the situation changed
Everybody kind of went into a bit of a panic with what was
going on at the time, with my dad, but when my dad settled
down, it kinda gave us all a bit of a jolt we got ourselves
together and we were able to speak to the different people
and get the support that we all needed, so it was really good.
[Name of GP, Name of community palliative care nurse], the
District Nurses and the Marie Curie nurses have all been
really, really good.
(Carer)
Well, just leavin’ me alone [laughs]. No botherin’ me, you
know? Just, well I have the house the way I want it and I’ve
got everything and everybody – they do what I ask, you
know. I don’t need to worry... ‘Cos nobody has bothered me
really at all, and I’ve kept myself to myself, and if I needed
anything, the Doctor has always been there and he’s very
good, aye. I’m happy aboot it.
(Patient)
Interviewer: So there’s a kind of comfort of knowing the support is there? Patient: Yes, as I say I don’t need it just now, but I may, in future, need it. You know?
Patient: Well I’m OK at the minute. I can get out and about. I get
tired, but I’m not needing extra things just now. There will be a
time, I suppose, when I will need more help. But nothing else
could be done for me at the moment. I’ve got everything I need.
Project Findings
33
Several patients found weekly follow-up at the day hospice provided reassuring structure to
their week.
Unplanned acute hospital admissions
Acute hospital admissions were common in 2012 in patients with lung cancer who were
for BSC, and remained common under the new model of care. There was a non-
significant trend towards a reduction in admissions, with 69.7% of patients in 2015-16
having one or more acute admission between diagnosis and death compared to 74.8% in
2012 (see Appendix N).
The average (mean) length of stay for acute hospital admissions in 2015-16 was 6.71.
This compared to a mean of 9.99 in 2012 (see Appendix N).
Figure 3. Mean length of stay per acute hospital admission between diagnosis and
death for 12 month subgroups of patients for BSC from diagnosis in 2012 and
2015-16
I’ve been thankful, because the very thought of coming here
once a week has kept me going, you know? I mean, I don’t
make too much conversation with anybody, and I like to hear
people talking, and its company that I’m enjoying and I can dip
in and out if I want.
(Patient)
Project Findings
34
The total number of acute bed days for the 2015/16 patients (n=99) was 624, compared
to 1079 for the 2012 patients (n=103). This equates to a 32.4% reduction in acute bed
days.
Figure 4. Total number of acute hospital bed days between diagnosis and death for
12 month subgroups of patients for BSC from diagnosis in 2012 and 2015-16
Every acute hospital admission of a patient supported by the new model of care triggered
an email alert to Specialist Palliative Care. Prompt review of the patient was made by the
team, along with discussion with the patient’s acute hospital teams. This enabled
comprehensive assessment details on the Clinical Portal to be highlighted and realistic
goals of care to be discussed and proposed.
A Consultant in Palliative Medicine prospectively reviewed a subgroup of 29 patients,
who were admitted 34 times, in order to evaluate the factors contributing to admission.
This expert review showed that 90% of admissions were related to the cancer diagnosis.
In addition a subjective judgement was made that 60% of admissions were deemed
unavoidable, meaning that hospital investigation and care was required. Many of the
remaining 40% of admissions could potentially have been avoided had it been possible
to arrange a robust homecare package at short notice, often out of hours.
Care coordination and follow-up was particularly important as patients neared the
end of life. Ensuring that patients their carers and families were as informed as they
wished to be, and where possible had choices about where they would be cared
for, was a priority.
I told [name of TCAT Consultant], she said about the hospice, I
says “No, I’m not going into any hospice. When my time comes
I’ll be in my own home.” I says, as for chemotherapy, “Sorry, no.
I don’t want that” I says “I’m doing it my way.” And that’s what
I’ve been doing which, as I say I take each day as it comes.
(Patient)
Project Findings
35
Weekend helpline
A weekend helpline piloted by the community specialist palliative care nursing team was
infrequently used by patients and those close to them (6 calls in an 8 week period).
Anecdotally, there was some confusion about the circumstances under which a patient,
family member or carer should call the helpline rather than an out of hours GP. There
was no capacity for the palliative care nurse to visit patients in their own homes at the
weekend, and this limited the clinical responsiveness that could be offered. After an eight
week pilot period the helpline was withdrawn.
Place of death
Under the new model of care, patients were significantly less likely to die in the acute
hospital (23.2% died in the acute hospital in 2015/16 versus 38.2% in 2012, p value =
0.021). There was a trend towards more people dying at home, in the hospice or
community hospital.
I asked if I could be in ma own house and they said, if it was
possible, or they might have to take me ‘up there’ and control
the pain, but they’d let me come home, and I would get a bed and
all that. That’s made me feel very pleased. Whether it happens or
not, it does nae matter, I’m pleased.
(Patient)
Project Findings
36
Health Economic Evaluation
Formal health economic analysis of the new model of care was undertaken by an independent
health economist, supported by the national TCAT Programme Evaluation Team at Edinburgh
Napier University. See Appendix I for full details of the analysis and findings.
Clinical and process data required for analysis was provided by the specialist palliative care
evaluation team. The cost of health care resource was calculated using Information Services
Division (ISD) Scotland data. Data from patients experiencing the new model of care was
compared to patient data from 2012, prior to the new model of care. For the most part, this
comparison focused on a subgroup of around 100 patients at each point who were for best
supportive care from diagnosis.
Key Findings
The available data shows that the introduction of the new model of care increased the
probability of dying at home for most subgroups of patients. This appears to be a more
favourable patient pathway than existed previously.
Resource use was reduced over a range of resource types for which data was available. For a
subgroup of 99 patients who were for BSC from diagnosis, a conservative estimate of the
potential cost minimisation was £417,261. The main driver for this was the reduced length of
hospital stay since the introduction of the new model of care. Although little difference was
noted in the absolute number of overall admissions, the length of stay still represented an
efficiency gain in terms of resource use. The average cost of the unplanned admissions was
also reduced by £1789. Investment of approximately £53,650 was required to realise these
savings.
Secondary care clinic follow up costs were not included in the health economic analysis. For the
majority of patients, routine follow up in secondary care following their lung cancer diagnosis
was no longer necessary. For the subgroup of 99 patients, this led to the cancellation of 67
outpatient appointments, likely resulting in further cost minimisation.
The Patient Experience, the ICECAP Supportive Care Measure
ICECAP Supportive Care Measure
The ICECAP Supportive Care Measure (ICECAP-SCM) was developed by the University of
Birmingham as a measure of wellbeing for use in economic evaluation conducted in an end of
life setting.14 This tool was chosen because of its accessibility for the frail patient group and the
likelihood of it causing minimal patient burden. The measures are linked to a capability
approach that defines wellbeing in terms of an individual’s ability to ‘do’ and ‘be’ the things that
are important in life.
Project Findings
37
This 7 item descriptive measure covers wellbeing attributes of:
Choice – expressed in the questionnaire as ‘having a say’ with questions worded as
‘being able to make decisions about my life and care’.
Love and affection – questions worded as ‘being able to be with people who care about
me’.
Physical suffering – questions worded as ‘experiencing significant physical
discomfort’.
Emotional suffering – questions worded as ‘experiencing emotional suffering’.
Dignity – questions worded as ‘being able to maintain my dignity and self-respect’.
Being supported – questions worded as ‘being able to have the help and support that I
need’.
Preparation – questions worded as ‘having had the opportunity to make the preparations
I want to make’.
Family and friends are also able to complete this questionnaire by proxy, but it was decided to
only approach patients able to answer the questions directly. Community specialist palliative
care nurses were asked to approach patients who were supported by the new model of care
during a specific time frame (January- August 2016) and who were well enough in their opinion
to manage a short interview.
Of the twelve patients interviewed, nine were at home. Of these, five had carers present who
also wished to contribute. Two people were interviewed alone in the Day Hospice and one in an
acute care bed in hospital whilst waiting for discharge home. Patients were aged between 55
and 80 years old and the interviewed carers were spouses (n=2), daughters (n=3) and a
granddaughter (n=1). Patients were given the choice to complete the document themselves, but
in all cases they chose to have the questions read out, and answered them verbally (often with
humorous additions). Completing the questionnaire did not appear to cause distress, confusion
or fatigue for patients.
ICECAP Findings
Twelve interviews using the ICECAP tool were completed with patients supported by the new
model of care.
1. Having a Say
Eleven people answered that they were ‘able to make decisions that I need about my life and
care most of the time’.
Patient: A’ the time- they dae as I say! (laughs)
Patient: I’m able to get my own say.
Husband: She always has. (all laugh)
Project Findings
38
One person answered with ‘don’t know’. This patient was in an acute ward at the time and very
much wanted to go home.
Patient: I want to go home. Not too sure of answer. Here they are very busy, I’m not
the only patient. At home I’ll be the only patient if I need the loo. Sometimes you
have to wait half an hour here, so little things like that you know.
2. Being with people who care about you
Ten patients stated that they were able to have this ‘most of the time’.
Patient: I’ve got nobody but ‘most of the time’. I like staying on my own.
One patient answered ‘some of the time’ explaining that they lived alone and had no family.
One patient answered “not on my terms”.
Patient: Difficult one because I’m in hospital and there are visiting times - not on
my terms.
3. Physical suffering
Three patients stated that they ‘always’ experienced physical suffering. Of these, two stated
they had pain and one suffered from breathlessness. One patient ‘often’ experienced
breathlessness and weakness, and three ‘sometimes’ did. Five patients ‘rarely’ experienced
physical distress. One patient did not wish to share the fact he was experiencing pain with
clinical staff.
Patient: At present I’m getting pain all the time.
Interviewer: So what are we doing about that here?
Patient: I never tell anybody anything.
Interviewer: So you don’t tell them?
Patient: Nah.
Interviewer: So, it’s kinda difficult for them to help you?
Patient: Aye.
4. Emotional suffering
Two patients ‘always’ experienced emotional suffering. One of these related this to pain.
Patient: Yes I do, with this damn pain.
Granddaughter: It only gets to that because sometimes she won’t say. She puts up
with it - we keep telling her.
One patient often experienced emotional suffering stating this was because of
their breathlessness. Three people ‘sometimes’ experienced emotional suffering with one
Project Findings
39
person linking this directly to breathlessness. One patient related it to mood and one, who
stated she was very independent, to feeling she was a burden on others.
Patient: Sometimes, I think it depends on your mood eh? If you get that kinda
mood.
Patient: I don’t like feeling a burden [tearful]. I worry. [daughter reassures her she’s not
a burden].
Six patients stated that they rarely experienced emotional suffering.
Patient: I never think about it.
Patient: Rarely. It’s kinda selfish.
Patient: I dinnae worry about anything. No matter what, I dinnae worry about it. If
you’ve got it, you’ve got it.
5. Dignity
Eleven patients stated they were treated with dignity ‘most’ of the time. The patient in hospital
stated that sometimes they were not.
Patient: Difficult because, here, [lowers voice] I feel one or two nurses don’t care like
I think they should care. I get the impression that one or two wish I wasn’t here,
you know, so it‘s difficult.
6. Being Supported
Eleven people stated they were supported ‘most’ of the time.
Patient: Most of the time - [laughs] - got to say that!
Relative: I’ll give her the tenner after!
One person stated that they didn’t use support.
Patient: Well I don’t get any. I’ve never asked for it. It’s available, but I dinnae use it,
eh?
7. Being prepared
Ten patients stated that they had the opportunity to make the ‘most’ of their preparations and
shared details.
Patient: …and my children know my wishes.
Patient: I’ve done that all already.
Project Findings
40
Patient: I have my will made.
Patient: I’ve done a funeral and a will.
Patient: I’ll just let the council get rid o’ me [laughs]. I’m no gonna have a funeral,
put it that way. Why should I spend, I’ve nae family, so why should I spend four
Grand, or whitever it is, on a funeral, when y’ore just whipped into the crem,
shoved in there and oot again and that’s four thousand pounds up in smoke. Whar
that money I could gie it away to someone that would appreciate it - well they
could gaun and get drunk or whatever they want on the money [patient and
interviewer laugh].
One patient stated they had made ‘some’ preparations and were getting help with the
remainder. One patient had made a few preparations. One patient had made none.
Patient: No, I havn’ae. There’s so much. No what I should have. I’m gonna get it
done.
Interviews were largely straightforward, with people evidently enjoying the opportunity to ‘have
their say’, but also to express their perceived debt of gratitude for support. However one
interview ran a little less smoothly, reflecting the complexity for specialist palliative care staff
who have, at times, to balance conflicting perceptions and needs within a family unit.
Patient: No, I don’t have any physical problems.
Patient’s wife: Yes he does. He has pain, breathlessness and that fat-i-gew.
Patient: No I don’t.
Interviewer: “Fat-i-gew”? [perplexed pause for rapid thinking] Do you mean, like being
tired?
Patient’s wife: Yes that very tired thing - all the time. The Fat-i-gew. Right.
Patient: No, I don’t.
Interviewer: Er, ok. [Interviewer looks at patient]. So what should I put? Er, “None of
the time”?
Patient’s wife: [stomps out to kitchen next door]. He doesn’t have them “none of the
time”.
Patient: “None of the time” thanks. [somewhat breathlessly].
Interviewer: OK. [Question on emotional distress]
Patient: Yes. Some of the time.
Patient’s wife: [comes back hurriedly through from the kitchen]. No he doesn’t. Well he
hasn’t told me he’s got emotional distress.
Patient: I have worries.
Patient’s wife: Well he hasn’t told me about them. [looks at interviewer]
Interviewer: [consciously returns eyebrows to usual position, whilst looking from one to
the other with pen in the air]. Er, em [pause whilst thinking]. So I wonder what I should
put?
Patient: Put “most of the time”.
Patient’s wife: He doesn’t have worries “most of the time”. He’s never mentioned
that once to me. [leaves room]
Patient [whispers] Put “most of the time”, hen.
Project Findings
41
Summary of New Model of Care Outcomes
NHS Fife now has a clear system for the identification and referral for Specialist Palliative
Care assessment and follow-up for all patients with lung cancer who are for best supportive
care. 246 patients and their carers and families were supported by the new model of care in
the first 15 months.
Comprehensive palliative care assessments were conducted promptly, wherever the patient
was located and always involved the opportunity to discuss the diagnosis and its
consequences in a sensitive and supported way.
Detailed letters based on the comprehensive palliative care assessments, including an eKIS
prompt and anticipatory care planning, were available on the Clinical Portal within 2 days for
all patients.
Patients, their families and carers were supported to play an active role in individualised goal
setting, care planning and coordination. Routine secondary care follow-up was no longer
needed for the vast majority, and was superseded by individualised follow-up based on
patient location, needs and preferences.
Under the new model of care there was a 32% reduction in acute hospital bed days between
diagnosis and death for patients with lung cancer who were for best supportive care from
diagnosis.
Patients were significantly less likely to die in the acute hospital, and more likely to die in
their own home, the hospice or a community hospital.
Resource use was reduced and a conservative estimate of the cost minimisation for a
subgroup of 99 patients was £417,261, for an investment of approximately £53,650.
Direct feedback from those supported by the new model of care:
Patients, families and carers appreciated the potential to maintain independence afforded by
knowing where to access support when needed.
The process of care coordination was not directly visible to patients, families and carers but
the quality of care it provided was deeply appreciated.
Direct feedback from health professionals:
High levels of commitment from health professionals to improve patient care led to systemic
change in practice.
The potential for further service development and delivery was clearly agreed.
42
Discussion
Fife Specialist Palliative Care received funding from Macmillan Cancer Support, as part of the
TCAT programme, to develop and pilot a new model of care for patients with lung cancer who
were for best supportive care (BSC). Prior to the new model of care there was no consensus on
what constituted ‘best supportive care’ or where and by whom it should be provided. The
absence of a defined clinical pathway led to inconsistencies and gaps in assessment and
follow-up in primary and secondary care. Patients and those important to them could be left
feeling unsupported and uncertain about how to access help. The opportunity for realistic goal
setting and anticipatory care planning could be missed, potentially leading to over-investigation
and treatment as cancer advanced. This could be distressing for patients and families and may
also have been an inappropriate use of healthcare resource.
Recognition that this patient group was typically frail with complex physical needs, high
symptom burden, short survival and high rates of acute hospital admission informed the
development of the framework for the new model of care:
Robust identification of patients
Comprehensive palliative care assessment and care planning
Care coordination and follow-up
Outcomes of the new model of care
This innovative model of proactive and consistent Best Supportive Care was
successfully piloted in Fife during 2015-2016. During the first 15 months, 246 patients,
their families and carers were supported by the new model of care.
All patients with lung cancer who were for best supportive care were identified immediately and
referred for a comprehensive palliative care assessment and personalised care planning. This
was carried out promptly at a location that suited the patients’ needs and preferences.
Patient, family and carer understanding of lung cancer and of their BSC status was explored
during the comprehensive palliative care assessment. Physical symptoms and psychological,
spiritual, social and financial issues were assessed and management plans agreed. When
appropriate, anticipatory care planning and preferences for future care and DNACPR were
discussed and recorded. An immediate action plan was given to the patient along with a lung
cancer and palliative care service information pack. Referrals were made to other services
swiftly and secondary care clinic appointments cancelled when no longer appropriate.
Assessments were recorded in a structured letter available to the wider healthcare team on the
Clinical Portal thus improving inter-professional communication. Follow-up was individualised
and aimed to be responsive to patients’ needs. E-alerts generated at the point of acute hospital
admission enabled prompt palliative care review.
Discussion
43
The new model of care in context
Several relevant national and local strategy documents were published during the development
and implementation of the Fife TCAT Lung Cancer Project.
Strategic Framework for Action on Palliative and End of Life Care
The new model of care aligns with the three central aims of the Scottish Government’s
Strategic Framework for Action on Palliative and End of Life Care (SFA).15
The first aim of the SFA states that:
Access to palliative and end of life care is available to all who can benefit from it, regardless
of age, gender, diagnosis, social group or location.
The model developed offers equitable access to all patients with lung cancer who are for BSC,
regardless of age, gender, ethnicity or socio-economic deprivation. This is supported both by
the fact that the majority of patients supported by the new model of care were in the two most
deprived socio-economic groups and that assessments took place in a location best-suited to
patient need.
In addition this model aligns with the second core aim of the SFA:
People, their families and carers have timely and focused conversations with appropriately
skilled professionals to plan their care and support towards the end of life, and to ensure
this accords with their needs and preferences.
The new model of care offered all patients with lung cancer for BSC and those close to them
opportunities to have timely and supported conversations. Prompt communication with primary
and secondary care teams with details of patient, carer and family understanding, needs and
preferences is another key achievement of the new model of care. This allowed those providing
care to patients and families a natural opening to continue these conversations and collaborate
with patients and families on their evolving needs and preferences.
The new model of care has also contributed to the ongoing debate about the significance of end
of life care to our society. The third SFA aim states that:
Communities, groups and organisations of many kinds understand the importance of good
palliative and end of life care to the well-being of society.
Ensuring that health and social care professionals across the entire care sector understand the
key importance of the first two aims will cumulatively impact on patients, families and ultimately,
communities.
Discussion
44
Realistic Medicine
Within Scotland, there is currently active dialogue about the need for a change of culture and
practice in healthcare. Realistic Medicine, the Chief Medical Officer’s 2016 report, sets out a
new vision for medical care in Scotland, and details the principles that should underpin this.16
Core themes include reducing the burden and harm of medical interventions, identifying
inappropriate variation in practice with a view to improving patient outcomes, engaging people
in decision making about their care and encouraging clinicians to innovate to improve patient
outcomes.
The new model of care developed in Fife for patients with lung cancer for BSC is wholly aligned
with the principles outlined in Realistic Medicine and provides solid evidence that care can be
simultaneously standardised and individualised. Examples of standardisation in relation to the
new model of care include:
Systems to support the robust identification of all patients with lung cancer for BSC.
The opportunity for all patients and those close to them to have timely and supported
discussions with Specialist Palliative Care.
Consistency in communication following patients’ comprehensive palliative care
assessments.
However the importance of individualised and patient centred care remains at the centre of this
model of care, as with all palliative care. The location of assessments and their content are
necessarily individualised, in response to patients’ frailty, needs and preferences. Follow-up is
similarly individualised, with routine secondary care clinics that patients were unfit to attend
cancelled, and interactions with health and social care professionals dictated by patient need
and preference. There was also clear evidence of this patient group making their own choices
when given the opportunity to do so, despite their frailty, rapidly changing needs and poor
prognosis. This is Realistic Medicine in action.
National Clinical Strategy
The Scottish Government’s National Clinical Strategy for Scotland (February 2016) prioritises
improved quality of care, evidence-based practice to improve patient safety, clinical
effectiveness and patient-centred approaches.17 It also endorses self-management,
encouraging people and communities to support each other. The Fife TCAT Lung Cancer
Project is aligned with each of these priorities, and has generated local evidence of best
practice which could be applied far beyond lung cancer in Fife.
Cancer Strategy
The Cancer Strategy Beating Cancer: Ambition and Action (March 2016) presents a broad
vision for diagnosis, treatment and care after cancer that incorporates person-centred, high
quality, equitable care.18 In specific terms, it acknowledges the need for palliative and end of life
care that is responsive to the changing preferences and priorities of people, and proposes that
all patients receive a treatment summary. The Fife TCAT Lung Cancer Project offers equitable,
high quality care that is proactive, responsive and empowers patients and families with
information and support.
Discussion
45
Local strategy in Fife
Locally, as part of Health and Social Care Integration, Fife Health and Social Care Partnership
published their Strategic Plan for Fife (February 2016).19 The plan has four strategic priorities,
three of which are directly addressed by the Fife TCAT Lung Cancer Project. These are:
Prevention and early intervention
Integrated and coordinated care
Reducing inequalities
Finally, the overarching theme of NHS Fife’s Clinical Strategy (October 2016) is patient-
centred care, including anticipatory care planning.20 There is a dedicated workstream for
palliative care and care in last days of life that is aligned to the national strategic framework for
action but more specifically references the TCAT Lung Cancer Project as an example of
innovative practice that can achieve both patient-centred and strategic goals.
Limitations
Service development at this systemic level is challenging and time consuming. It took a high
level of commitment by the core team to communicate a vision and facilitate global
understanding of the project. Whilst many early formal conversations were held with colleagues
in primary and secondary health and social care, it cannot be assumed that depth of
understanding about the project aims and achievements was achieved.
Planning and conducting the evaluation of the new model of care was challenging for many
reasons, but none more so than the physical frailty of the patients, their propensity to rapid
deterioration and the distress that so often surrounded this. A rapid flexible approach to
collecting views of patients and families on their experiences was required. It was not possible
to reach the numbers of people intended because of rapidly changing health status combined
with the lack of dedicated evaluation resource. Furthermore, there was no contemporaneous
group of patients for comparison. However, despite this, the mixed methods evaluation provided
a range of relevant, meaningful and constructive findings.
Clinical resources were somewhat limited, despite the extra resource afforded by the project
grant. This was particularly felt in the community, where the new model of care demanded
additional time and expertise, and where true clinical responsiveness as patients’ needs
changed was not always possible.
Out of hours care is a wider challenge than for patients with advanced lung cancer. However,
the frailty of this patient group and their vulnerability to acute medical deterioration with resultant
changing care needs meant that out of hours care was often accessed. The majority of patients
had one or more acute hospital admissions between diagnosis and death, 70% of which
occurred ‘out of hours’. Without adequate clinical resource in the community for out of hours
clinical assessments, or viable inpatient alternatives to the acute hospital, such admissions will
continue to be needed. Whilst anticipatory care planning is important, it does not remove the
need for responsive health and social care when patients’ clinical and social needs change.
Discussion
46
NHS Fife’s Clinical Portal provided a platform for the sharing of detailed information about
patient, family and carer understanding, needs and preferences. This reduced the need for
duplication of assessment and enabled health professionals in primary and secondary care to
‘hit the ground running’ when they came into contact with patients ‘known’ to the new model of
care. Colleagues in social care were not able to access this clinical information, despite there
being widespread acknowledgement of its value. Work is ongoing between health and social
care to explore how teams might communicate better in the future.
Fife Specialist Palliative Care recognised the high prevalence of stoicism in this patient group
ahead of the development of the new model of care. This was borne out by the experience
during the delivery of the service and the evaluation. It is not clear whether the new model of
care sufficiently facilitates the capacity of people to refuse, question or engage with realistic
expectations within their care plan.
Existing and proposed outputs following the project
Regular communication with health and social colleagues in Fife regarding both the objectives
of the new model of care and the progress in achieving these was a priority from the outset.
Four newsletters were produced (see Appendix O for an example), introducing staff project
members, describing different aspects of the project and providing updates on key progress and
achievements. Each newsletter also gave a brief summary of a relevant clinical guideline from
the recently launched national palliative care guidelines. Newsletters were disseminated
electronically and as hard copies, and were well-received. Several formal and informal
presentations about the project were delivered over its first twenty months, and at a variety of
fora including national conferences (Macmillan TCAT events, Scottish Partnership for Palliative
Care conference, Allied Health Cancer Rehabilitation conference), regional meetings (two
SCAN Lung Cancer Group meetings), local events (Grand Round, several different
departmental meetings) and more. Further dissemination of the project findings is planned,
including oral presentations (17th World Conference on Lung Cancer in December 2016),
additional oral and poster presentations at local, regional and national fora (including further
Macmillan and SCAN Lung Cancer meetings) and peer reviewed publication in both Oncology
and Palliative Care journals.
Where next? Best Supportive Care as a concept
The new model of care for patients with lung cancer for BSC in Fife has provided a template for
proactive BSC, led and coordinated by Specialist Palliative Care. The model has been positively
evaluated, with evidence that the majority of patients and those close to them felt well-informed,
supported and cared for.
But should BSC only begin when anti-cancer treatment ends? Integrating palliative care
alongside disease-modifying treatment is not a new concept, and may offer significant benefits
for patients and those close to them. Consideration of the potential benefits and the resource
implications of extending proactive BSC to wider patient groups, even those receiving anti-
cancer (or other disease-modifying) treatments, should follow.
Discussion
47
Another important consideration is what BSC might look like for other patient groups, with
cancer and non-cancer diagnoses. Examples include patients with cancers which typically carry
a high symptom burden and short prognosis (e.g. pancreatic cancer), those with cancers that
are often less rapidly progressive (e.g. prostate or breast cancer), but also people with a range
of life-limiting non-malignant diseases, including those with multi-morbidity.
Further discussions are needed about how learning from the development of this new model of
care might usefully inform wider service developments for patients with a range of malignant
and non-malignant conditions. Specialist Palliative Care is well placed to offer expertise and
support to other healthcare teams in primary and secondary care looking to develop models of
BSC for their patient groups.
Conclusions
Fife Specialist Palliative Care has developed and piloted a new model of ‘best supportive care’
for patients with incurable lung cancer that is both proactive and consistent. Best supportive
care for this frail patient group is no longer defined by its lack of anti-cancer treatment, rather by
its commitment to timely and equitable access to supportive and palliative care.
Additional resources will be required to continue and further develop this model of care. In
particular if the support is to be extended out-of-hours, which was not possible within the scope
of this pilot project. Not only is this care much more in accord with a patient-centred approach
resulting in improved quality of care and experience, but there are demonstrable cost savings
and efficiencies including reduced in-patient length of stay and avoidance of unnecessary out-
patient clinic attendances and investigations.
Whilst this project was specific to patients with lung cancer the potential applicability to people
with other advanced malignancies, as well as non-cancer life-limiting conditions, is obvious.
Discussion
48
Recommendations
Local
1. Resources should be sought to continue to develop and embed this new model of best
supportive care for patients with lung cancer in Fife. Further work will be required to fully
identify the additional or realigned resources required to embed this model for lung
cancer patients and extend to other patient groups.
2. The Palliative Care Management Team and the NHS Fife Palliative Care Group should
actively use the report’s findings to inform and shape future care provision for all patients
for whom a best supportive care approach is appropriate.
3. The full report should be actively disseminated to NHS Fife and Health and Social Care
Partnership strategic and clinical governance groups in order to reach all service areas
where patients may benefit from a palliative or best supportive care approach.
4. Opportunities to share the key findings of the report at educational events in order to
embed, develop and spread the learning should be sought.
National
5. The report describes a framework for best supportive care for patients with lung cancer
and establishes a new standard of care against which other services can be
benchmarked. It should be widely circulated and promoted to all NHS Boards and cancer
networks to support service improvement for patients with lung cancer, and also other life
limiting illnesses.
6. The report should be used to inform future reviews of National Standards and Key
Performance Indicators in respect of cancer and palliative care, and in particular best
supportive care pathways.
49
Appendices
Appendix A: Glossary
Allied Health Professionals (AHPs) are health care professions distinct from nursing, medicine, and
pharmacy. They include physiotherapy, occupational therapy, dietetics and speech and language
therapy.
Anticipatory Care Planning is conducted with patients and those important to them in order to plan
ahead for changes in their condition that might reasonably be expected.
Care Coordination is the deliberate organisation of patient care activities between two or more
participants (including the patient) involved in a patient's care to facilitate the appropriate delivery of
health care services.
Chemotherapy is a type of anti-cancer medication that can be given by mouth or intravenously (into a
vein).
Clinical Portal is the secure online system that NHS Fife uses for electronic patient records. It
allows clinicians to view information about individual patients drawn from information held in
different clinical systems e.g. patients’ blood test or scan results and clinic letters.
Cohort is a group of people who share a characteristic e.g. age, disease, profession.
Co-morbidities are one or more additional diseases or disorders occurring alongside (that is,
concomitant or concurrent with) a primary disease e.g. lung cancer.
DNACPR Do Not Attempt Cardiopulmonary Resuscitation. CPR is an emergency treatment that can
sometimes re-start the heart and circulation of blood and/or breathing following a cardiac and/or
respiratory arrest. DNACPR refers to a medical decision made not to perform CPR where it is unlikely to
be successful due to a patient’s clinical condition.
Electronic Key Information Summary (eKIS) is a national online tool that enables sharing of important
patient information across healthcare settings. Once complete it becomes part of the patients’ electronic
record and is accessible to Out of Hours GPs, Scottish Ambulance Service, NHS 24 and hospital teams.
It can provide up-to-date information including diagnoses, medication, future care plans, patients’ wishes
and preferences.
Hospice is a ward or unit where care is delivered to patients (inpatients and outpatients) who have
palliative care needs. They are designed to provide a caring environment for meeting the physical and
emotional needs of people living with advanced illnesses, and those important to them.
Model of Care broadly defines the way health services are delivered. It outlines best practice care and
services for a person, population group or patient cohort as they progress through the stages of a
condition, injury or event.
Oncology is the branch of medical science that deals with cancer. Oncology doctors and nurses support
patients through diagnosis and cancer treatment.
50
Out of Hours is the period when GP Practices and core services are either closed or have reduced
capacity/staffing. Normally Monday to Thursday 18.00-08.00 and Friday 18.00 until Monday 08.00
(118hrs per week).
Palliative Care is defined as “the active holistic care of patients with advanced, progressive illness.
Management of pain and other symptoms and the provision of psychological, social and spiritual support
is paramount. The goal of palliative care is achievement of the best quality of life for patients and
families. Many aspects of palliative care are also applicable earlier in the course of the illness in
conjunction with other treatments.” Specialist Palliative Care is defined as “the active total care of
patients with progressive, far advanced disease and limited prognosis and their families, by a multi-
professional team who have undergone recognised specialist palliative care training. It provides physical,
psychological, social and spiritual support, and will involve practitioners with a broad mix of skills.”
Specialist palliative care is an integral component of the care of patients with advanced cancer and other
diseases, required at varying times during their illness.
Palliative Radiotherapy or Chemotherapy is administered with the aim shrinking the cancer or slowing
its growth to relieve symptoms and improve quality of life (rather than with the aim of cure).
Primary Health Care professionals are the team of health care staff providing care outside the hospital
e.g. GPs, practice nurses, district nursing team, allied health professionals (AHP’s), pharmacists, etc.
Proactive means creating or controlling a situation rather than just responding to it after it has
happened.
Radiotherapy is the use of high energy rays, usually X-rays to treat cancer.
Randomised Control Trial is a research study in which people are allocated at random to receive one
of several clinical interventions. One of these interventions is the standard of comparison or control.
The control may be a standard practice, a placebo ("sugar pill"), or no intervention at all.
Secondary Care is the services planned and delivered in acute hospitals.
SIMD Scottish Index of Multiple Deprivation is the Scottish Governments official tool for identifying those
places in Scotland suffering from socioeconomic deprivation.
Supportive Care is defined as care that “helps the patient and their family to cope with a disease from
pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and
into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as
possible with the effects of the disease.”
51
Appendix B: Fife Specialist Palliative Care Service
This service is entirely funded and provided by NHS Fife for the adult population in the area.
The Fife population is 368,000 of which around 304,000 are over the age of 16 years. The NHS
Fife Palliative Care Service is a fully integrated multidisciplinary team working across the whole
health and social care system.
Service Component Description
Inpatient Specialist Palliative Care Beds
10 bed Hospice on the Victoria Hospital site, Kirkcaldy. 9 bed Hospice in the Queen Margaret Hospital site in Dunfermline. 4 Palliative Care Beds within the St Andrews Community Hospital.
Outpatients A day hospice is provided Monday to Friday on the Victoria Hospital site.
Community Palliative Care Working closely with primary care and provided by specialist community palliative care nurses and consultants. This includes out of hours medical advice service.
Hospital Palliative Care Support Team Provided predominately to the acute hospital in Kirkcaldy but also to other hospital areas through specialist nurses and doctors.
Education
Post graduate and undergraduate level as well as more general education to the wider workforce.
The Team
NHS Fife Specialist Palliative Care Service is situated in the West Division of the Health and
Social Care Partnership with dedicated time from a Clinical Services Manager and a Lead
Nurse.
Team Staff numbers
Inpatients Each hospice unit is managed by a band 7 senior charge nurse, with band 6 charge nurses and a wider team with levels according to the workforce tool.
Medical Team 2.6 wte Consultant, 1.8 wte Associate Specialist Doctors and 1.2 wte Speciality Doctors
Community Palliative Care Nurses 7 wte band 6
Hospital Palliative Care Nurses 2 wte band 7
Counsellor 0.9 wte
Children and Family Practitioner 1 wte
Pharmacy 1 wte
Physiotherapy 2 wte and 0.2 support worker
Dietician 0.5 wte
OT 3.7 wte and 0.5 wte support worker
Admin 4 wte
Chaplaincy From the NHS Chaplaincy Team
52
Appendix C: TCAT National Programme
Transforming Care After Treatment National Programme (TCAT)
The Transforming Care After Treatment Programme (TCAT) is a £5 million five-year programme
funded by Macmillan Cancer Support Scotland. It is a partnership between the Scottish
Government, Macmillan Cancer Support, NHS Scotland, local authorities and third sector
organisations which aims to:
Enable people affected by cancer to play a more active role in managing their own care.
Provide services which are more tailored to the needs and preferences of people affected by
cancer.
Give people affected by cancer more support in dealing with the physical, emotional and
financial consequences of cancer treatment.
Improve integration between different service providers and provide more care locally.
25 projects to redesign and evaluate new models of health and social care are being supported
in Scotland. In addition to the Lung Cancer project there are two other TCAT projects in Fife:
Fife Council “Integrated Community Cancer Care Project” and NHS Fife Dermatology
Melanoma Project. The project teams work in partnership and have developed links between
the three projects.
External evaluation
Edinburgh Napier University (ENU) was commissioned by Macmillan Cancer Support to
conduct and report a national evaluation encompassing all phase one TCAT projects (including
the Fife lung cancer project). The Fife Specialist Palliative Care Service provided basic
anonymised data to ENU for all patients referred to the service and also participated in a focus
group where TCAT was discussed more broadly. The remit of the national evaluation differed
considerably from the locally led project evaluation, reported here. National evaluation findings
will be reported separately.
53
Appendix D: Fife Council ICCC TCAT Phase 2
Integrated Community Cancer Care Project: Transforming Care After Treatment (TCAT)
Phase 2
Fife Council’s Phase 2 TCAT project has been named the “Integrated Community Cancer Care”
(ICCC) project, developed with direct links to the phase one projects within NHS Fife. There is
a strong commitment between NHS Fife and Fife Council to work in partnership to improve the
cancer care journey for people affected by cancer in Fife.
The overall aim of the ICCC project is to develop an integrated cancer care pathway, focussed
on supporting individuals to access community services. The project is piloting the Local Area
Co-ordinator (LAC) role within an integrated cancer pathway. LACs aim to help people affected
by cancer to deal with the physical, financial and emotional impact of a cancer diagnosis by
discussing their hopes and concerns and constructing an individualised plan. This should
enable them to access services and find support in their local community. The LAC supports
people affected by cancer to get the right information to build their confidence and resilience to
live with and beyond their cancer diagnosis.
The ICCC project has 3 referral streams:
1. Patients referred directly from the Phase 1 lung cancer project
2. Patients referred directly from the phase 1 melanoma project (also being hosted by NHS
Fife)
3. Adult patients with a cancer diagnosis from Fife Council, NHS Fife (all services), third
sector, Fife Sports and Leisure Trust or self-referrals
Within Fife all 3 TCAT projects work together strategically alongside patient representatives,
Macmillan Cancer Support, third sector and SCAN representatives. This is enabling the
development of an integrated model of working, improving understanding between health and
social care services as well as improving communication. Ultimately the goal is to provide
seamless, proactive services for people with a cancer diagnosis.
The ICCC project is currently developing a model of engagement and participation to allow
people who have been affected by cancer to share their cancer journey with someone who has
had their own cancer experience. The peer-to-peer meeting scheme typically takes place in
Maggie’s Centre, Kirkcaldy but other venues more local to individuals, have been used to offer
some flexibility. The LAC organises and supports the meetings and with consent records the
positive and negative experiences of the individual’s cancer journey, as well as suggestions to
improve services.
A network of Cancer Champions within Fife Council is linked to the ICCC project to interface
with frontline services to promote, educate and signpost cancer services to service users,
carers and professionals. Work is underway to extend the Cancer Champion network into the
third sector to function more interactively and sustainably.
The ICCC project will run until July 2017. The project is currently working towards sustainable
outcomes for the successful elements of the programme.
54
Appendix E: Allied Health Professionals (AHP) Project
TCAT Lung Cancer Allied Health Professionals Project
The aim of the Allied Health Professional (AHP) project was to ensure that all patients with lung
cancer identified as requiring best supportive care had timely access to appropriate AHP
interventions.
Background
A successful bid for additional Scottish Government money secured £38,227 to implement an
AHP project within the acute hospital setting, to run alongside and support the aims of the Fife
TCAT Lung Cancer project.
The importance of AHP interventions in cancer care is well recognised (Macmillan Cancer
Support, Allied Health Professionals in cancer care: An evidence review, 2011), especially in
relation to the promotion of self- management.
Prior to the start of the project, AHP referrals from acute hospital wards relied on staff having a
good understanding of the role of AHP’s and also fully understanding the changing needs, and
often short prognosis, of this patient group. Some patients were never referred or referred too
late for maximum benefit.
The project plan involved Dietetics, Occupational therapy (OT), Physiotherapy and Speech and
Language therapy. However it proved challenging to recruit additional AHP staff due to the short
timescale of the project and the small number of hours that were funded (0.2 WTE per
profession). Input was therefore largely from OT and Dietetics.
Identification of Patients
Mechanisms were developed to identify TCAT patients in a timely way. Patients with lung
cancer for BSC in the acute setting were identified by AHP staff in three ways: through the new
e-alert system; through a weekly email with the outcomes of the lung cancer multidisciplinary
meeting; and by OTs attending the daily “board round” on the respiratory ward.
Occupational Therapy (OT)
72 patients have received OT intervention. Patients’ functional ability, symptoms and potential
for rapid decline were rapidly assessed in order that patients, and carers, had the information to
make informed decisions about their future care. OTs had a key role in discharge planning,
often having to expedite discharge when the prognosis was very short. In situations where end
of life care at home was not possible OTs often worked in collaboration with clinical staff in
supporting patients and families to make these difficult decisions. They also helped patients with
non-pharmacological symptom management, including breathlessness management and
energy conservation. These self-management techniques promoted a sense of control and
provided strategies to manage anxiety.
An end of care summary, which was emailed to clinical staff working in the community and
available on the clinical portal, was developed to ensure timely communication and prevent
duplication of effort. Future work includes piloting a patient held summary and using the
summary as a referral tool to social work OT staff.
Dietetic Intervention
55
During the initial 3 months of the project 36 patients were assessed. Only 12% of these patients
would have been seen if identified by the MUST (Malnutrition Universal Screening Tool), which
is the standard route of referral in the acute hospital setting.
A palliative approach to nutritional support was used with the emphasis on reassurance,
providing information on the effects of cancer on appetite and setting realistic nutritional goals.
The aim was to promote enjoyment of food and reduce anxiety by giving practical advice.
Local data demonstrating the typically short prognosis of patients with lung cancer for best
supportive care helped to change practice, providing clear justification for a ‘realistic’ and
person-centred approach at all times.
Education of ward staff on the dietician’s role in patients requiring palliative care is ongoing.
Project Report
A full report of the AHP project will follow in 2017.
56
Appendix F: Demographic and Clinical Characteristics
Demographic and clinical characteristics of all patients diagnosed with lung cancer in Fife in
2012, and the ‘BSC from diagnosis’ subgroup
All Fife patients diagnosed with lung cancer 2012 (n=312)
BSC from diagnosis subgroup 2012
(n=103)
Gender % (n)
Female 49% (152) 55% (57)
Male 51% (160) 45% (46)
Median age years (IQR) [age range]
72 (65-79) [35-91] 77 (69-83) [44-91]
Cancer type % (n)
NSCLC 53% (166) 24% (25)
SCLC 11% (33) 6% (6)
Other 2% (7) 3% (4)
Radiological diagnosis
34% (106) 66% (68)
Cancer stage % (n)
1 14% (44) 10% (10)
2 8% (25) 6% (6)
3 22% (68) 17% (17)
4 51% (160) 65% (67)
Missing 5% (15) 3% (3)
Performance Status (PS) % (n)*
0 6% (20) 2% (2)
1 38% (118) 13% (13)
2 25% (77) 25% (26)
3 22% (68) 44% (45)
4 3% (11) 7% (7)
Missing 6% (18) 10% (10)
Median survival (days)** (IQR) 173 (55-644) 73 (31-173)
*Eastern Cooperative Oncology Group Performance Status. Range 0-5 where 0=fully active, 1=
restricted in strenuous activity but able to carry out light work, 2=capable of all self-care but no
work, up and about >50% of waking hours, 3=capable of limited self-care, spending >50%
waking hours in bed/chair, 4=completely disabled and confined to bed/chair, 5=dead
**Survival from date of diagnosis (at multidisciplinary team meeting, MDM) to death or censor date of 21 August 2015. There were still 2 patients alive at censor date.
57
Appendix G: Patient Personal Action Plan
Lung Supportive Clinic
Patient-held Action Plan
Name:................................................................................................................................
Name of health professional:.............................................................................................
Date:...................................................................................................................................
Issues Action
Physical
Breathless
Thrush in mouth
Prescription for Morphine
long acting tablets
(Zomorph) 10mg twice a
day
Continue to take Morphine
liquid (Oramorph) 5mg as
required for breathlessness
or pain
Prescription for Nystatin
mouthwash 5ml four times
a day
Social
Struggling a little at home For referral to homecare
manager to discuss options
for homecare
Financial
Not receiving any benefits Refer to Macmillan
Benefits Advice for review
at home
Information pack
Includes information on TCAT, best supportive care, benefits, and useful contact list
Not/given to patient
Other
Would not want attempted
resuscitation
GP to complete form for
house
Follow up
Patient has/not agreed to community palliative care team referral
We have/not referred to CPCT
eKIS
Patient has/not given consent to information being placed in eKIS
GP to place the patient on the palliative care register and complete eKIS
58
Appendix H: Example Structured Letters
Victoria Hospital
Hayfield Road
Kirkcaldy
Fife
KY2 5AH
Palliative Care
Tel: 01592 643355/640872
Queries Carol Hardie Ext 20303
http://www.nhsfife.scot.nhs.uk
GP Dr X
CLINIC LETTER
CHI:
Hospital ID:
Dear Dr X Clinic Date: 01/01/2016 Date: 01/01/2016
Diagnosis Adenocarcinoma of the right lung with pleural metastatic disease
Others: History of anxiety
Hypertension
Moderate COPD
Date of Referral: 1st January, 2016
Source of referral: Macmillan Lung Cancer Nurse Specialist
I visited Mrs X at home with her husband, daughter and the Associate Specialist in Palliative Medicine.
Patient Understanding of Disease and Best Supportive Care
Mrs X and her family are aware of her diagnosis of lung cancer and understand that she is too frail for
Oncological treatment. We have today explained the role of our service and monitoring and managing
symptoms related to her lung cancer alongside her GP and District Nurse. We have explained that our
aim is to optimise her symptom control and provide ongoing support for her and her family.
Clinical History and Current Problems
She is generally very frail and has right sided chest pain which she attributes to her recent pleural
drainage. The pain has settled with the use of Tramadol 50mg QDS. She has a poor appetite but has
recently started Dexamethasone 4mg on a reducing dose, and feels that her appetite has improved slightly
since this. She is very dyspnoeic on exertion. We have today discussed the use of hand held fan and the
role of Morphine Liquid in the future, for management of her breathlessness. She is very fatigued and
manages upstairs once a day, to go to bed at night. Her family have a commode downstairs. She sleeps
very well at night. She spends most of the day lying on the settee but manages out once a week to visit
her daughter who lives nearby. She is tending towards constipation since she started taking Tramadol
50mg. I would be grateful if you would consider prescribing Senna tablets for this please.
Social and Financial Issues
She lives with her husband who keeps reasonably well and he manages to do the cooking and shopping.
Her daughter who lives nearby is very supportive and visits daily and assists her mum with her personal
care. She has organised equipment in the house from the community occupational therapy service
including a bath seat, mattress raiser and grab rails. She also has a son in England who visited recently.
59
The family have today declined an offer of referral to the Macmillan Welfare Benefits Service.
Advance Care Planning, including PPC and PPD
She does not wish to discuss disease progression or look towards her future care needs. She feels very
mentally relaxed and settled at this time and prefers to take things one day at a time. She has, however,
agreed to her details being entered into the eKIS system. It has not been possible to discuss DNACPR
with her at this visit. Her family are happy for me to maintain contact with them to offer support at home.
Action plan
(A copy of this action plan has been given to the patient)
Issues Action
Physical
Pain.
Constipation.
Pressure area care.
To continue with Tramadol 50mg QDS.
GP to consider Senna tablets.
Referred to the district nurses for
pressure relieving equipment.
Social
No Issues
Financial No Issues
Information pack
Includes information on TCAT, best
supportive care, benefits, and useful
contact list
Given to patient
eKIS
Patient has given consent to
information being placed in eKIS. GP to place the patient on the
palliative care register and complete
eKIS
Please be reminded that there is access to advice from a Palliative Care Physician 24/7 by telephoning the
Victoria Hospice in Kirkcaldy on 01592 648072.
Please do not hesitate to get in touch if I can be of any further assistance.
Yours sincerely
Community Specialist Palliative Care Nurse
cc. Consultant Respiratory Physician
Lung Cancer Clinical Nurse Specialist
District Nurse
60
Victoria Hospital
Hayfield Road
Kirkcaldy
Fife
KY2 5AH
Palliative Care
Tel: 01592 643355/640872
Queries Ext 20303
http://www.nhsfife.scot.nhs.uk
GP Dr X
CLINIC LETTER
CHI:
Hospital ID:
Dear Dr X Clinic Date: 01/01/2016 Date: 01/01/2016
Diagnosis: Radiologically diagnosed left lung cancer (T3N2M0)
Severe COPD
Smoker
Hypertension
Date of lung MDT: 1st January 2016
Patient Location at time of MDT: Home
Decision at MDT: Best Supportive Care, possible palliative radiotherapy
I reviewed Mrs X in Outpatients with her sister and the Lung CNS as part of TCAT, a project assessing
the impact of early palliative care for patients with lung cancer who are for best supportive care.
Patient understanding of disease and best supportive care
Mrs X has had several scans, including a PET CT scan, in the last few weeks. She had not been told the
results of these so I was able to tell her today that unfortunately she has incurable cancer. She took this
remarkably well saying that she had suspected all along that she might have cancer. I explained there is no
oncological treatment available but palliative radiotherapy could be considered for specific symptoms
such as pain or breathlessness. She said that she would have refused any treatment anyway. We did,
however, talk about the role of palliative care in trying to optimise her quality of life and enable her to
stay at home.
Clinical History and Current Problems
She does not currently have much in the way of symptoms. She feels breathless on exertion but is still
managing to climb the stairs and carry out all of her activities of daily living. She has no pain at present.
She is eating reasonably well, has no nausea or vomiting and is opening her bowels regularly. Her current
performance status is 2/3.
Social and Financial Issues
She is starting to find things a little bit more difficult but is still managing to live independently at home.
We discussed homecare but she does not feel she needs this at present. She has two sisters who live
nearby and visit her on a daily basis. She is in receipt of a pension but would be eligible for attendance
allowance. She has consented to referral, which we have done, to Macmillan Benefits Advice who will
do a full assessment at home.
61
Advance Care Planning, including PPC’s and PPD
She is very clear that her preferred place of care and death is home. Her husband died from emphysema
ten years ago and had wanted to die at home but in his last hours was so symptomatic with pain and
breathlessness that an ambulance was called and unfortunately he died shortly after departing the house.
I have reassured her that if we know her wishes and can identify problems early we would do our very
best to enable her to stay at home. However, I have explained that sometimes it can be difficult to
achieve this due to symptoms or insufficient support at home. We discussed resuscitation and she would
not want this to be attempted in the event of cardio-respiratory arrest. I would be very grateful if you
could complete a DNACPR form for the house.
She has consented to eKIS and I would grateful if you could update this to include her preference to avoid
any further hospital attendance.
She has agreed to referral to community palliative care team which I shall do today.
Action plan
(A copy of this action plan has been given to the patient in clinic)
Issues Action
Physical
Fatigue
Breathlessness
No action required at present.
Social
Currently managing at home
Financial
In receipt of pension only
Refer to Macmillan Benefits
Advice.
Information pack
Includes information on TCAT,
best supportive care, benefits,
and useful contact list
Given to patient
Other Would not want attempted
resuscitation GP to complete DNACPR
form for the house
Follow up
Patient has agreed to
community palliative care team
referral
We have referred to CPCT
eKIS
Patient has given consent to
information being placed in
eKIS
GP to place the patient on the
palliative care register and
complete eKIS
Please be reminded that there is access to advice from a Palliative Care Physician 24/7 by telephoning the
Victoria Hospice in Kirkcaldy on 01592 648 072.
Yours sincerely
Consultant in Palliative Medicine
cc. Consultant Respiratory Physician
Consultant Oncologist
Lung Cancer Clinical Nurse Specialist
Community Specialist Palliative Care Nurse
62
Appendix I: Health Economics
Health Economic Evaluation
Introduction
The following is a report written as part of the TCAT Evaluation project undertaken by
Edinburgh Napier University for Macmillan Cancer Support. This report details the economic
analyses undertaken in collaboration with NHS Fife as part of the Phase 1 TCAT projects.
Overview
The Fife TCAT Lung Cancer Project aimed to develop and test a model of care which could be
extended to all patients with advanced cancer. The new model incorporated a risk stratified
pathway to provide more proactive and responsive palliative care through the development of a
best supportive care clinical pathway. It was anticipated that the number of unplanned
admissions and follow up in secondary care clinics would be reduced. This report outlines the
final findings in relation to the economic outputs of the project. The report is structured
according to the outcomes that were identified in the Interim Report.
A comparison of patient pathways for best supportive care, prior to and following the
new model of care
This outcome was achieved using decision analytical modelling. Probability trees were built
using TreeAge pro software to map the patient journey for both the new clinical pathway and a
comparator pathway. The Fife project team ensured the final trees were clinically relevant and
accurate.
The trees were populated with observational data supplied by the Fife team. The data were
gathered over a 12 month period for both groups, with 102 participants’ data being available for
2012 and 99 for the 2015 tree. Resultant probabilities were calculated. The pre and post ‘new
model of care’ probability trees can be seen at the end of this appendix.
A comparison of resource use prior to and following the new model of care
Resource use was calculated using observational data supplied by the Fife team. Costs were
sourced from Scottish Health Service Costs (ISD 2015). All costs were calculated using data
specific to NHS Fife from the financial year 2014/15. For costs of laboratory testing, it was
assumed that there was an equal amount of haematology and biochemistry testing completed.
The costs allocated were therefore the average of these two tests (£5.74 for haematology,
£5.27 biochemistry). Equally, for CT/MRI costs, an average of the two tests was used (£38.98
for CT, £111.40 MRI). Given the short duration of the project (12 months), no discounting was
applied.
63
Total Number of
tests (Number of tests
x n)
Cost range Total Number of tests
(Number of tests x n)
Cost range
Year 2012 2015
Resource
Laboratory testing (blood) Cost per test £5.50
Once 27 £148.64 33 £181.67 2 – 5 times 86 – 215 £473.43 -
£1183.58 84 - 210 £462.42 –
£1156.05 6 – 10 times 66 - 110 £363.33 - £605.55 48 – 80 £264.24 -
£440.40 11+ times 66 £363.33+ 11 £60.56
Total £1348.73 - £2301.10 £968.89 - £1838.68
Difference Saving £379.84 - £462.42
Radiology (conventional x-ray) Cost per examination £48.76
One 48 £2340.48 45 £2194.20 Two 20 £975.20 28 £1355.76
Three 6 £292.56 6 £292.56 Four 8 £390.08 4 £195.04 Five 10 £487.60 5 £243.80 Six 12 £585.12 0 0
Total £5071.04 £4277.36
Difference Saving £793.68
CT/MRI Cost per examination £75.19
One 15 £1127.85 19 £1428.61 Two 8 £601.52 2 £150.38
Three 9 £676.71 0 0 Four 4 £300.76 0 0
Total £2706.84 £1578.99
Difference Saving £1127.85
Bed days Cost per bed day £912.00
1079 £984048.00 624 £569088.00 Total £984048.00 £569088.00
Difference Saving £414960.00
Overall Total £993174.61 - £994126.98 £575913.24 – £576783.03
Overall Difference
Saving £417261.37 - £417343.95
A comparison of unplanned admissions prior to and following the new model
For this outcome, all admissions were considered unplanned. A comparison of the admission
rates is given below. The data does not include patients who were diagnosed with lung cancer
as acute hospital in-patients and subsequently died in hospital on that admission.
2012 (Total available cohort n = 91)
2015 (Total available cohort n = 92)
Difference
Admission to Hospital (Total) 56 57 + 1
Admitted once 47 41 - 6
Admitted more than once 9 16 + 7
Admission to Hospice (Total) 16 14 - 2
Admitted once 16 12 - 4
Admitted more than once 0 0 0
64
Discussion
Patient pathways
An overview of the probabilities of each terminal node are presented below. A comparison of
the changes in probability is also presented. Given the sample sizes available (n = 102 for 2012
and n= 99 for 2015) and the 18 terminal nodes in the probability tree, some of the end points
were calculated with very minimal data. Where probability is 0 on the figures, this indicates no
data availability for that branch (i.e. this event was not observed in the patient population during
the study period). Where the difference is negative, there has been a reduction in the probability
of that event happening based on the observed data. Positive differences indicate an increase
in that event.
Event 2012 2015 Difference
Assessment as in patient 0.325 0.162 - 0.163
Dies in hospital 0.099 0.07 - 0.029
Discharged from hospital to hospice and dies in hospice
0.02 0.02 0
Discharged home, no further admissions and dies at home
0.062 0.03 - 0.032
Discharged home, readmitted to hospice and dies in hospice
0.02 0 - 0.02
Discharged home, readmitted once to acute care and dies in acute care
0.074 0.02 - 0.054
Discharged home, readmitted once to acute care and dies in hospice
0 0 0
Discharged home, readmitted once to acute care and dies at home
0.028* 0.01* - 0.018
Discharged home, readmitted more than once to acute care and dies in acute care
0.01* 0.003* - 0.007
Discharged home, readmitted more than once to acute care and dies at home
0 0.003* + 0.003
Discharged home, readmitted more than once to acute care and dies in hospice
0.01 0.003* - 0.007
Assessment as out patient 0.675 0.838 + 0.163
Dies at home/in the community 0.127 0.182 + 0.055
Admitted to a hospice and dies in in hospice 0.117 0.121 +0.004
Admitted to acute care once, and dies at home 0.127 0.131 + 0.004
Admitted to acute care once and dies in acute care 0.186 0.161 - 0.025
Admitted to acute care once and dies in hospice 0.049 0.09 + 0.041
Admitted to acute care more than once, and dies at home
0.029 0.05 + 0.021
Admitted to acute care more than once and dies in acute care
0.039 0.08 + 0.041
Admitted to acute care more than once and dies in hospice
0 0.02 + 0.02
* indicates that terminal node data were calculated on n= 1
The introduction of the new model of care has increased the chance that patients will have best
supportive care at diagnosis in the community. The probability of dying in hospital has been
reduced, as has the chance of being readmitted before death. For those with multiple
readmissions, the observational data again suggest that the overall probability of this happening
has been reduced since the implementation of the new model of care, for all in the multiple
65
readmission groups except those who die at home. For those assessed as outpatients, since
the introduction of the new model, the probability of dying at home or in a hospice has been
increased for all subgroups except those with multiple acute care admissions prior to death.
Resource use
Overall, healthcare resource use was less for the 2015 data set compared to 2012. Cost
savings were generated across all resource use for which data was available. The greatest
reduction was generated as a result of the reduction in bed days noted following the introduction
of the new model. Overall, using the resource data collected by the Fife team, the new model of
care represents a cost minimisation in the range of £417261.37 - £417343.95.
Comparison of unplanned admissions prior to and following the new model of care
The data show that overall, there has been a slight increase in hospital admissions (by n = 1)
and a slight reduction (by n = 2) in admissions to hospice care.
A further simple model was built to compare the outcomes of unplanned admissions pre and
post introduction of the new model. The model compares outcomes in terms of probability of
events occurring and cost. Costs data were not available for hospice care specific to NHS Fife
and were sourced from work based in NHS England (Georghiou and Bardsley 2014). Average
length of stay for Hospice was calculated using inpatient data from ISD Scotland for Palliative
Medicine (ISD Scotland 2016). As no TCAT specific data were available for average length of
hospice stay, it was assumed that this would remain constant over the two time points
compared. Average length of stay for hospital was calculated from the TCAT project evaluation.
Resource inputs
Cost of hospital admission
Bed day, NHS Fife £912.00 (ISD Scotland 2015)
Average bed days per admission 2012 9.99 (TCAT data set)
Average bed days per admission 2015 6.71 (TCAT data set)
Total 2012 £9110.88
Total 2015 £6199.52
Cost of hospice admission
Bed day, UK based hospice care £400 (Georghiou and Bardsley 2014)
Average bed days per admission 15.25 (ISD Scotland 2016)
Total £6100
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The analysis of unplanned admissions can be seen below in Figure 1.
Figure 1: Unplanned admissions
This analysis shows that given the probabilities of unplanned admissions calculated from the
observed data, the resource use of the average admission prior to the new model of care was
£7951.69. This average was reduced to £6161.70 under the new model of care.
Conclusion
Overall, the available data show that the new model of care for patients with lung cancer has
increased the probability of dying at home for most subgroups. This appears to be a more
favourable patient pathway than before the introduction of the service. Resource use has been
reduced over the resources for which data was available and potential cost minimisation has
been achieved in the region of £417261.37. The main driver for this is the reduced average
length of hospital stay. Although little difference was noted in the absolute number of overall
admissions, the length of stay still represents an efficiency gain in terms of resource use. The
average cost of unplanned admissions has also been reduced by £1789.99.
Subsequent work which incorporates quality of life ratings, a bigger sample size and more in
depth resource use data could help inform any future cost benefit analyses of the service. The
current work has given an insight into comparisons of observational data in relation to costs and
resource use. A clear area for future study is how the quality of service has impacted on the
patient experience. Combining this with the current models evaluating resource use would
enable a comparison of cost effectiveness in addition to cost minimisation.
67
Health Economic References
Georghiou, T, Bardsley, M. (2014). Exploring the cost of care at the end of life. Nuffield Trust, London. Information Services Division Scotland. (2015). Scottish Health Service Costs. Available online at http://www.isdscotland.org/Health-Topics/Finance/Costs/ [Accessed 29.09.16] Information Services Division Scotland. (2016). Inpatient and Day Case Activity. Available online at http://www.isdscotland.org/Health-Topics/Hospital-Care/Inpatient-and-Day-Case-Activity/ [Accessed 11.10.16]
Probability tree with 2012 data (prior to the new model of care)
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Probability tree with 2015 data (following the introduction of the new model of care)
69
Appendix J: ICECAP
ABOUT YOUR WELL-BEING Please place a tick () in ONE box in EACH group below, to indicate which statement best describes your situation at the moment
1) Having a say – Your ability to influence where you would like to live or be cared for, the kind of treatment you
receive, the people who care for you
I am able to make decisions that I need to make about my life and care most of the time 4
I am able make decisions that I need to make about my life and care some of the time 3
I am able to make decisions that I need to make about my life and care only a little of the time 2
I am never able to make decisions that I need to make about my life and care 1
2) Being with people who care about you – Being with family, friends or caring professionals
If I want to, I am able to be with people who care about me most of the time 4
If I want to, I am able to be with people who care about me some of the time 3
If I want to, I am able to be with people who care about me only a little of the time 2
If I want to, I am never able to be with people who care about me 1
3) Physical suffering – Experiencing pain or physical discomfort which interferes with your daily activities
I always experience significant physical discomfort 1
I often experience significant physical discomfort 2
I sometimes experience significant physical discomfort 3
I rarely experience significant physical discomfort 4
4) Emotional suffering – Experiencing worry or distress, feeling like a burden
I always experience emotional suffering 1
I often experience emotional suffering 2
I sometimes experience emotional suffering 3
I rarely experience emotional suffering 4
5) Dignity – Being treated with respect, being spoken to with respect, having your religious or spiritual beliefs
respected, being able to be yourself, being clean, having privacy,
I am able to maintain my dignity and self-respect most of the time 4
I am able to maintain my dignity and self-respect some of the time 3
I am able to maintain my dignity and self-respect only a little of the time 2
I am never able to maintain my dignity and self-respect 1
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6) Being supported – Having help and support
I am able to have the help and support that I need most of the time 4
I am able to have the help and support that I need some of the time 3
I am able to have the help and support that I need only a little of the time 2
I am never able to have the help and support that I need 1
7) Being prepared – Having financial affairs in order, resolving things that are important to you, having treatment
preferences in writing or making a living will
I have had the opportunity to make most of the preparations I want to make 4
I have had the opportunity to make some of the preparations I want to make 3
I have had the opportunity to make a few of the preparations I want to make 2
I have not had the opportunity to make any of the preparations I want to make 1
Thank you for your help
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Appendix K: Lung Supportive Clinic Patient Experience Questionnaire
Lung Supportive Clinic Patient Satisfaction Survey
This is a short questionnaire about the Lung Supportive Clinic.
To help improve our service and only if you feel able to, we would appreciate your views on the experience you have had
attending this clinic. A stamped addressed envelope is enclosed.
Please complete this questionnaire by placing a cross in the box you wish to select. If you make a mistake, fully blacken the incorrect choice then make a new selection. Please complete using a black ball point pen. Thank you. Q1. Age Q2. Gender Male Female Q3. Do you feel you had enough time with the Palliative Care Consultant? Too little time Too much time Just the right amount of time Not applicable Q.4 If you felt that you had too little time with the Palliative Care Consultant do you have any comments? Q5. Did you feel you were given enough time to discuss your concerns? Too little time Just the right amount of time Too much time Q6 Did you feel the Palliative Care Consultant explained your condition in a way you could understand? Yes No Not applicable Comments Q7. Did you receive enough information about your diagnosis? Yes No Q8. Was the written information you received useful? Very useful Useful Not applicable Q9. Were your questions answered in a way you could understand when you had contact with the Palliative Care
Consultant? Yes Yes, sometimes No
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Comments Q10. Did you receive from the Palliative Care Consultant contact details, i.e. phone Number / leaflet about the
Community Specialist Palliative Care Team? Yes No Q11. Do you feel that the Palliative Care Consultant and Palliative Lung Cancer Nurse offered support to you?
Yes No Comments
Q12. Did you feel that the Palliative Care Consultant and Palliative Lung Cancer Nurse offered support to your relatives? Yes No
Comments Q13. Is there anything else you would like to comment on?
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Appendix L: Reasons patients not assessed for new model of care
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Appendix M: Basic Demographics and Clinical Characteristics
Basic demographic and clinical characteristics of ‘baseline’ and ‘new model of care’ patients
who were for BSC from diagnosis
2012, n=103 2015-16, n=99
Age Median (IQR) Under 65 Over 65
77 (69-83) 13% (13) 87% (90)
74 (69-82) 16% (16) 84% (83)
Gender Male Female
45% (46) 55% (57)
52% (51) 48% (48)
SIMD quintiles 1 (most deprived) 2 3 4 5 (least deprived)
29% (30) 31% (32) 21% (22) 10% (10) 9% (9)
32% (32) 23% (23) 11% (11) 20% (20) 13% (13)
Cancer type/radiological diagnosis NSCLC SCLC Mesothelioma/other Radiological diagnosis
24% (25) 6% (6) 3% (4) 66% (68)
15.% (15) 12% (12.1) 6% (6) 66% (65)
ECOG Performance Status* 0 1 2 3 4 Missing data
2% (2) 13% (13) 25% (26) 44% (45) 7% (7) 10% (10)
1% (1) 6% (6) 35% (35) 43% (43) 11% (11) 3% (3)
* SIMD: This is a validated area-based index that uses 37 indicators in seven domains to rank
6505 small geographical areas in Scotland (data zones) from 1 (most deprived) to 6505 (least
deprived). These are grouped into quintiles, splitting the data zones into 5 groups, each
containing 20% of Scotland’s data zones. The first quintile contains the 20% most deprived data
zones and the fifth represents the 20% least deprived
**Eastern Cooperative Oncology Group Performance Status. Range 0-5 where 0= fully active,
1= restricted in strenuous activity but able to carry out light work, 2= capable of all self-care but
no work, up and about >50% of waking hours, 3= capable of limited self-care, spending >50%
waking hours in bed/chair, 4= completely disabled and confined to bed/chair, 5= dead
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Appendix N: Acute Hospital Admissions
Details of acute hospital admissions for a sample of patients who were for BSC from diagnosis
in 2012 (n=103) and under new model of care in 2015/16 (n=99)
2012 2015/16
BSC from diagnosis
Number of patients for BSC from diagnosis in 12 month period
103 99
Number of these patients with one or more acute admissions between diagnosis and death
77 69
Percentage of these patients with one or more acute admissions
74.8% 69.7%
Total number of admissions 108 93
Timing of admission
In hours Number of admissions 49 28
Percentage of total admissions 45.4% 30.1%
Out of hours - weekday
Number of admissions 23 39
Percentage of total admissions 21.3% 41.9%
Out of hours - weekend
Number of admissions 36 26
Percentage of total admissions 33.3% 28.0%
Bed days
Total number of acute bed days between diagnosis and death for patients who were for BSC from diagnosis
1079 624
Median number of bed days (IQR) [Range] 5 (11.25) [0-37] 4 (8) [0-62]
Mean bed days per admission 9.99 6.71
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Appendix O: Sample TCAT Newsletter
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Appendix P: TCAT Steering Groups
The TCAT Steering Groups evolved as the Phase 1 Lung Cancer and Melanoma projects
became established and Fife Council received funding for their Phase 2 project in order to
facilitate integrated strategic planning.
TCAT Lung Cancer Project Steering Group Members, May 2014 – March 2015
Dr Sheena Scragg TCAT Lung Cancer Project Lead – Chair
Mrs Sandra Bagnall SCAN Patient Involvement Manager and Project Manager, Macmillan
Ms Nisreen Badiozzaman Macmillan Development Manager, Macmillan Cancer Support (from February 2015)
Dr Joanna Bowden Consultant Palliative Medicine, NHS Fife
Dr Steinunn Boyce Consultant Palliative Medicine, NHS Fife (from November 2014)
Mrs Libby Cahir Cancer and Palliative Educator, NHS Fife (until November 2014)
Mr David Chinn Research and Development Co-ordinator, NHS Fife
Mrs Shirley Cowie Cancer and Palliative Care Educator, NHS Fife
Ms Carol Galloway Hospital at Home, NHS Fife
Mrs Carol Hardie TCAT Lung Project Coordinator, NHS Fife
Mrs Susan Hynd Management Accountant, NHS Fife
Mrs Elaine Law Service Manager Adult Services East, Fife Council (from February 2015)
Dr Felicity Little Consultant Oncologist, Edinburgh Cancer Centre
Ms Morag Lyell Community Specialist Palliative Care Nurse, NHS Fife
Miss Murdina MacDonald Macmillan Lead Cancer Nurse, NHS Fife
Ms Lorna McGoldrick Maggie’s Centre, Fife (until September 2014)
Mr Tom McInnes Macmillan Development Manager, Macmillan Cancer Support (until February 2015)
Ms Marianne MacLeod Highly Specialised Occupational Therapist, NHS Fife
Dr Catriona Macpherson Children and Families Practitioner, NHS Fife Specialist Palliative Care
Mr Gordon McLean TCAT National Programme Manager
Dr Brian Montgomery Medical Director, NHS Fife
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Mrs Karen Nolan Public Health and Palliative Care Services Manager, Glenrothes/NE Fife CHP, NHS Fife
Ms Julie Paterson Service Manager(Adults East), Fife Council (until February 2015)
Ms Elizabeth Preston TCAT Clinical Lead
Mrs Heather Preston Lung Cancer Specialist Nurse, NHS Fife
Dr Neil Pryde Macmillan Lead Cancer GP/Cancer Lead, NHS Fife
Mr Frank Robinson Adult Social Work Services, Fife Council (until winter 2014)
Mrs Elspeth Salter Manager, Maggie’s Centre (until September 2014)
Dr Colin Selby Consultant Respiratory Physician, NHS Fife
Dr Fran Stretton Consultant Palliative Medicine, NHS Fife
Mrs Karen Stewart Cancer and Palliative Care Educator, NHS Fife
Mrs Jacquie Stringer Health and Physical Activity Manager, Fife Sports and Leisure Trust
Dr Ed Wallace Clinical Lead, Glenrothes/NE Fife CHP, NHS Fife
Ms Varrie Wardrope Patient/Family Representative
Fife Strategic TCAT Steering Group, April 2015 to May 2016
Mrs Elaine Law Service Manager Fife Council - Chair
Dr Sheena Scragg TCAT Lung Cancer Project Lead, NHS Fife – Vice-Chair
Mrs Sandra Bagnall SCAN Patient Involvement Manager and Project Manager, Macmillan
Elizabeth Preston Clinical Lead, SCAN
Ms Nisreen Badiozzaman Macmillan Development Manager
Fiona Sneddon Macmillan Cancer Support
Ms Louise Bell Service Manager, Fife Council
Ms Jo Clark Manager , Fife Voluntary Action (from January 2016)
Ms Rachel Duff Scottish Care Group
Ms Winnie Franks Social Worker, Fife Council (until June 2015)
Ms Alison Harrow Centre Head, Maggie’s Centre
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Ms Elaine Hancock Dermatology Skin Cancer Link Nurse
Ms Morag Lyell TCAT Project Lead Nurse, NHS Fife (until January 2016)
Ms Janice Maccrimmon Team Manager, Adult Services, Fife Council
Miss Murdina MacDonald Macmillan Lead Cancer Nurse, NHS Fife
Mr David Mcllroy Programme and Change Manager, Fife Council (until May 2015)
Ms Liz Marshall OT Services, Fife Council (until June 2015)
Dr Megan Mowbray Consultant Dermatologist and Project Lead TCAT Melanoma Project, NHS Fife
Dr Neil Pryde Macmillan Lead Cancer GP/Cancer Lead, NHS Fife
Ms Leslie Middleton Marie Curie
Mrs Jacquie Stringer Health and Physical Activity Manager
Ms Fiona Prendergast Fife Sports and Leisure Trust (from June 2015)
Mr Ian Stone Patient Representative
Ms Varrie Wardrop Patient/Family Representative
Mrs Alison Watt TCAT Project Manager, Fife Council (from May 2015)
Fife Strategic TCAT Steering Group May 2016 to date
Mrs Elaine Law Service Manager Fife Council - Chair
Dr Sheena Scragg TCAT Lung Cancer Project Lead NHS Fife – Vice-Chair
Mrs Sandra Bagnall SCAN Patient Involvement Manager and Project Manager
Ms Elizabeth Preston Clinical Lead SCAN
Ms Nisreen Badiozzaman Macmillan Development Manager Macmillan Cancer Support
Ms Jo Clark Manager, Fife Voluntary Action
Miss Murdina MacDonald Macmillan Lead Cancer Nurse NHS Fife
Dr Megan Mowbray Consultant Dermatologist and Project Lead TCAT Melanoma Project NHS Fife
Dr Neil Pryde Macmillan Lead Cancer GP/Cancer Lead NHS Fife
Mr Ian Stone Patient Representative
Mrs Alison Watt TCAT Project Manager Fife Council
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TCAT Lung Cancer Project Operational Group Members
The project operational group membership varied with time as the project developed and was implemented. The following people contributed:
Dr Sheena Scragg TCAT Lung Cancer Project Lead – Chair
Dr Abdah Akram Palliative Medicine, Associate Specialist, NHS Fife
Mrs Sandra Bagnall SCAN Patient Involvement Manager and Project Manager
Ms Elizabeth Preston Clinical Lead, SCAN
Dr Joanna Bowden Consultant Palliative Medicine, NHS Fife
Dr Steinunn Boyce Consultant Palliative Medicine, NHS Fife
Mrs Carol Connolly Lung Cancer Specialist Nurse, NHS Fife
Ms Mary Conroy Community Specialist Palliative Care Nurse, NHS Fife
Mrs Shirley Cowie/Mrs Karen Stewart
Cancer and Palliative Care Educator, NHS Fife
Ms Carol Galloway Hospital at Home, NHS Fife
Mrs Carol Hardie TCAT Lung Project Coordinator, NHS Fife
Dr Felicity Little Consultant Oncologist, Edinburgh Cancer Centre
Ms Morag Lyell Community Specialist Palliative Care Nurse, NHS Fife
Ms Janice Maccrimmon Team Manager, Adult Services, Fife Council
Miss Murdina MacDonald Macmillan Lead Cancer Nurse, NHS Fife
Mrs Fiona Mackenzie Clinical Services Manager, West Division, NHS Fife
Ms Marianne MacLeod Highly Specialised Occupational Therapist, NHS Fife
Dr Catriona Macpherson Children and Families Practitioner, NHS Fife Specialist Palliative Care
Mrs Janice Malecki Hospital Specialist Palliative Care Nurse, NHS Fife
Ms Moira Mendey District Charge Nurse, NHS Fife
Ms Jane Morris Community Specialist Palliative Care Nurse, NHS Fife
Mrs Karen Nolan Public Health and Palliative Care Services Manager, Glenrothes / NE Fife CHP, NHS Fife
Mrs Heather Preston Lung Cancer Specialist Nurse, NHS Fife
Dr Neil Pryde Macmillan Lead Cancer GP/Cancer Lead, NHS Fife
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Dr Fran Stretton Consultant Palliative Medicine, NHS Fife
Mr Scott Sweaton Senior Charge Nurse, Victoria Hospice, NHS Fife
Dr Fiona Walker Palliative Medicine Associate Specialist, NHS Fife
Ms Varrie Wardrope Patient/Family Representative
Mr Neil Watson Senior Charge Nurse, Queen Margaret Hospice, NHS Fife
Mrs Alison Watt TCAT Project Manager, Fife Council
Fay Richmond Clinical Services Support Manager NHS Fife
TCAT Lung Cancer Project Evaluation Team
Dr Joanna Bowden Consultant Palliative Medicine – Evaluation Lead
Mrs Carol Hardie TCAT Lung Project Coordinator, NHS Fife
Dr Catriona Macpherson Children and Families Practitioner, NHS Fife Specialist Palliative Care
Supporting Team
Ms Morag Lyell Community Specialist Palliative Care Nurse, NHS Fife
Dr David Chinn Senior Research Advisor, NHS Fife Research and Development
Ms Karen Campbell Macmillan Associate Professor, Edinburgh Napier University
Mrs Lucy Johnston Research Fellow, Edinburgh Napier University
Dr Stephen Fenning Specialty Registrar in Palliative Medicine, NHS Fife
Ms Brooke Marron Research Assistant, Edinburgh Napier University
Ms Sarah Cruickshank Medical Student, University of Aberdeen
Ms Agi McFarland Health Economist, Edinburgh Napier University and Glasgow Caledonian University
Contact email addresses
Dr Joanna Bowden [email protected]
Dr Steinunn Boyce [email protected]
Mrs Carol Hardie [email protected]
Ms Morag Lyell [email protected]
Mrs Fiona Mackenzie [email protected]
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