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Sharing Current Scottish Practice

This blog provides an opportunity for people to share examples of current Scottish palliative care practice that might be of interest to the palliative care community more widely. If you know of work underway that might be relevant for sharing on our website, please get in touch.

Poster abstracts of the month: July

The SPPC Annual Conference in 2014 featured 40 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Preferred Place of Death: What are we documenting and what are we achieving?

Author(s) of poster: Victoria Beveridge, Audra Cook, Dr Alistair McKeown

When a patient has a requirement for Palliative care, a needs assessment should be undertaken and their wishes explored. This audit examined the recording of preferred place of death (PPoD) in patient documentation and the number who achieved PPoD.

A representative, retrospective review of 48 Hospice patients who died between January and March 2014 was undertaken to evaluate the following:

1.To review a sample of Hospice users and establish the percentage with documented PPOD.

2.To review place of death and whether PPoD was/was not discussed/achieved and any documented reasons.

Overall, 79.17% of patients had PPOD recorded, 6.25% patients had no PPoD recorded but reasons documented and 14.58% had no documented PPoD without reasons recorded. By service:

  • 66.67% of Outpatients had PPoD documented; 50% achieved PPoD.
  • 88.89% of Day Hospice users had PPoD documented; 75% achieved PPoD.
  • 73.33% of IPU users had PPoD documented; 100% achieved PPoD.
  • 83.33% of Community services users had PPoD documented; 80% achieved PPoD.

Within the hospice we have been successful in several areas with regards recording and achieving PPoD, while other areas still require further examination. This poster will expand further on the above data and discuss barriers to achieving PPoD.

Provision of Lymphoedema Risk-Reduction Information by Health Care Professionals to Women Undergoing Gynaecological Cancer Treatment

Author(s) of poster: Allan Thomson

Poster highlights and describes that the problem of lymphoedema following gynaecological cancer treatment is under recognised in a Local Health Board by HCPs. It displays the results of a project looking at awareness of this type of lymphoedema and provision of risk-reduction information to at-risk patients by the HCPs who provide care to them along their cancer treatment journey. It concludes with a possible model for who should provide this information and when. Barriers and facilitators to providing risk-reduction information are discussed.

Reflections on the Treatment Decisions and Patient Journey in a Case of Lymphoedema and May-Thurner Syndrome: Case Study

Author(s) of poster: Margaret Anne Garner

When we think of lymphoedema, we generally accept that this long term condition can be a side effect of cancer treatments, venous disease, trauma and injury (Lymphoedema Support Network, 2014). Despite ongoing advances in the diagnosis and management of lymphoedema, it is sometimes difficult to ascertain the true cause when there is a co-existing rare venous disorder. This poster presentation highlights a rare case of May Thurner Syndrome which developed in a 34 year-old woman in week 34 of her first pregnancy. May-Thurner Syndrome (MTS) also known as iliac vein compression syndrome (IVCS) occurs when there is compression of the left iliac vein by the overlying right iliac artery, due to an anatomical variant (Kibbe et al 2004, Hayer et al 2012) The symptoms include left leg swelling and pain and it occurs more frequently in women. This case highlights MTS as a possible differential diagnosis for left leg swelling and pain and it demonstrates the benefits and potential burdens to the patient in the role of main co-ordinator of their care. The patient journey, particularly with regard to ongoing management of lymphoedema are described using comparative photographs and a graph recording the improvements in the leg measurements throughout the last 2 years.

Role of the nursing in palliative care within A&E

Author(s) of poster: Audrey Colman, Staff Nurse A&E Department, University Hospital Crosshouse; Josaleen Connolly Macmillan Project Lead, NHS Ayrshire and Arran.

I undertook an education programme in palliative care because I have a special interest in caring for patients who are nearing end of their life but I recognised that improvements within our clinical area were required. The education programme consisted of an online Practical Palliative Care module which was developed by the University of the West of Scotland (UWS) and linked with our local Ayrshire Hospice to provide a 5 day placement. After undertaking the education programme I knew that patients at end of life were often brought to the emergency department and rarely offered any palliative care services. I returned to my workplace and looked at how we in A&E could cater for this group of patients in the future. Since then, I have had various opportunities to enhance care for patients nearing the end of their life. Knowing that colleagues in specialist palliative care are accessible, we have worked collaboratively to influence the quality of care that our patients and families deserve to receive. The case highlighted sets out how changes were made in the emergency department to ensure palliative care services offered to patients at end of life met their wishes and eased distressing symptoms.

Supporting the needs of People with Learning Disabilities through the Palliative Care Journey

Author(s) of poster: Liz Smith, Allison O'Donnell

The Learning Disabilities and Palliative Care: Building Bridges-Supporting Care project is based at The Prince and Princess of Wales Hospice and is now in its 3rd year. Part of the work currently being done through the project is the development and pilot of a care pathway for people who have learning disabilities and palliative care needs. A very important part of the pathway looks at the choices and decisions that need to be made by people with Learning Disabilities approaching end of life and how staff and carers can be supported to help them do this, in particular through the use of advanced care planning. The poster will illustrate how through the use of advanced care planning patients can be supported to do this which is an integral part of the care pathway.

Tailored care for end of life patients and their carers in Fife

Author(s) of poster: Karen Sandeman, Diana Hekerem, Karen Nolan, Valerie Maxwell

Traditionally, improvements in health and social care and support services focus on individual services - often without understanding or addressing the complex relationships between them. This poster will describe how the new Fife Marie Curie Service works in harmony with NHS Fife and Fife Council Social Care Services, developing care plans that work best to suit the needs of the patient and family/carer. This new partnership service offers tailored care and support for terminally ill people and their families through facilitating hospital discharge, a flexible home nursing service and support from volunteers. All referrals to the service are managed by Marie Curie Senior Nurses and a Marie Curie Helper Volunteer Manager.

Key outcomes the service aims to deliver include:

  • Supported discharge from the acute/hospice setting allowing 130 new patients to be cared for at home.
  • 30 new community service users supported by Marie Curie Helper Service.
  • 28% increase on the previous year in the number of patients supported through planned care.

It is envisaged that the development of this partnership service to meet the growing need for both palliative and end of life care in the community will deliver significant benefits for patients and families/carers in the Fife area.

The experiences of caregivers of patients with delirium, and their role in its management in a palliative care setting

Author(s) of poster: Jean Lugton, Anne Finucane, Catriona Kennedy, Juliet Spiller

Background: Delirium remains the most common and distressing neuropsychiatric complication in patients with advanced cancer. This study examines the experiences of caregivers of patients with delirium and their role in its management. It explores evidence for interventions that improve support for these caregivers and which help them support the patient.

Method: An integrative literature review was undertaken. Four databases were searched using the terms ‘delirium’, ‘terminal restlessness’ or ‘terminal agitation’ combined with ‘carer’ or ‘caregiver’, ‘family’ or ‘families’. Twenty five papers were included in the final review.

Results: Distress is experienced by many caregivers of patients with delirium. Fear, anger, disappointment and sadness are common. However, caregivers potentially play an important role in caring for patients with delirium in (i) prevention and detection of delirium ii) acting as advocates for patients, and iii) assisting in monitoring patient symptoms. Caregivers desire more information about delirium and advice on how to behave towards patients during a delirium episode however there is little evidence for specific interventions in this regard.

Conclusion: Caregiver focused interventions need to be developed and evaluated to determine the type of approaches that help the caregiver support the patient, and increase support for caregivers themselves.

The Role of an Occupational Therapist and Physiotherapist with a Hospital Palliative Care Team: An Impact Assessment

Author(s) of poster: Rosemary Cairns, Michelle Lennox, Lesley Goodman

Funded from Macmillan Cancer Support, this is a three-year project looking at the addition of an Occupational Therapist (OT) and Physiotherapist (PT) to an already established hospital palliative care team of nurses, doctor, social worker, pharmacist and complementary therapist. Inspiration for the project came from complex patient discharges. The team wanted to explore what difference there would be by having an OT and PT educated specifically to a specialist palliative care approach. Both the OT and PT brought a wealth of knowledge and experience to the service and in turn they have gained an enormous amount. For example enhanced communication skills to enable advance care planning discussions, the ethos of thinking ahead and recognising the individual needs of patients to a specialist level. A key role is to liaise with generalist OTs and PTs and provide advice to support palliative care patients. Both the OT and PT are now studying towards the Graduate Certificate in Palliative Care.

Poster Abstracts of the Month: May

The SPPC Annual Conference in 2014 featured 40 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Making today matter everyday

Author(s) of poster: Susan Campbell, Fiona Cruikshank, Miriam Tadjali, Stephen Tinney, Kirsty Cornwall

‘Making today matter’ is our everyday business. We not only look after people’s physical needs, but also their needs as individuals and important members of their own families/social networks. Patients wish to mark a special occasion – bringing Christmas forward or supporting a couple to get married - during their time with us, and it is our aim to support them wherever we can. Special events and celebrations are held to create memories for the future. We also look at the nutritional aspect of all catering which is provided to patients and where they are assessed to be requiring additional nutritional support this is undertaken by the hospice team. A nutritional chart/ tool has been developed to identify which patients could be at risk. The care we provide goes above and beyond treating physical symptoms. It is difficult to measure the impact of the ‘extra’ effort that staff put into looking after people’s needs in any tangible way, but the gratitude people feel is clear to see; ‘Thank you….…for our beautiful wedding – balloons, food, service, flowers, location, driver who took me to get wedding rings, cake, bubbly. You made our day so very special.’

Managing not mending

Author(s) of poster: Jan Stanier Lead Speech & Language Therapist, Clyde Acute NHS Greater Glasgow & Clyde/Queen Margaret University Edinburgh; Dr Janet Beck, Head of Speech & Hearing Sciences, Queen Margaret University Edinburgh and Dr Mairghread Ellis, Programme Lead Podiatry, Queen Margaret, University Edinburgh

This poster depicts the preliminary findings of an exploration into the experiences of Speech and Language Therapists in providing end of life dysphagia (swallowing) care to people with Head and Neck Cancer. Whilst previous researchers have explored what the role entails (Pollens 2012; 2004, Newman 2009, Roe 2007), to date the reported experiences of those providing this care has not been fully examined. The study adopts a qualitative, phenomenological approach and has a multi-centre design.

The research question asks ‘What is the experience of Speech & Language Therapist in providing end of life care to people with head and neck cancer’.

Preliminary findings indicate that SLTs described a lack of preparation and guidance, differing experiences across settings, successes and challenges with multi-disciplinary team working, a view that swallowing management is different with this caseload, some lack of awareness and clarity around the SLT role, a considerable emotional impact and a concern with effective risk management and patient led decision making.

Palliative care training for social work home carers in Renfrewshire

Author(s) of poster: Susan Jackson

There is increasing recognition that the population in Scotland like other areas in the UK is ageing. Many people are living with the effects of one or more chronic illnesses (Audit Scotland 2008) with much of their care being delivered in the home or care home setting. Palliative care is a core component of the care package for this population and as such should be routine practice for health care professionals. However social care home carers are now facing clients with palliative care needs on a daily basis and are often unprepared for the situations they encounter. To address this within Renfrewshire, Accord Hospice designed and delivered several education sessions specifically tailored for this group and found it to be a worthwhile exercise with participants expressing increased confidence in their knowledge of palliative care. As a result discussions took place with Renfrewshire Community Health Partnership (CHP) and Renfrewshire Council to consider a collaborative approach to delivering a palliative care education and training programme for the home care service. An application was made to the Queen's Nursing Institute Scotland (QNIS) for a Partnership in Practice award which supported the delivery of a series of training days to 200 social home care staff in a period of 12 months.

Panning for gold: Ensuring an evidence base for End-of-Life decision making

Author(s) of poster: Margaret Colquhoun and Joyce Templeton

The End-of-Life Care (EOLC) Group is part of Clinical Governance at the Hospice with responsibility for quality EOLC. Good outcomes depend on staff having timely access to evidence for decision-making and understanding individual patient/family choices(1). Information literacy – i.e. access to electronic databases and search skills – are central to achieving this(2) in the context of an expanding literature. Membership of the EOLC Group is varied in terms of discipline and academic background. Using the metaphor of panning for gold, the Librarian and the Senior Nurse Lecturer, supported members to access the NHS Knowledge Network and set up electronic database search alerts. Members - individually or in pairs - selected an aspect of EOLC e.g. documentation or care after death, set up an alert and they bring relevant articles – ‘nuggets’ - to the meeting. Although not without its challenges, this approach has promoted staff engagement and integration of evidence with practice.

References:

1.Rutledge, D.N., Kuebler, K.K. 2005. Applying evidence to palliative care. Seminars in Oncology Nursing, 21 (1) pp.36-43.

2.Callinan, J. et al 2010. Analysis of library-associated information needs of staff in a specialist palliative and gerontological care centre in Mid-West Ireland. Health Information and Libraries Journal, 27, pp.286-294.

Partnership working to improve the quality of end of life care in care homes and at home

Author(s) of poster: Jan Dobie (Lead facilitator) Marlis Plumb (Facilitator) Sarah Shepherd (Facilitator) Louise Wood (Administrator)

Poster describes a 2-year fixed-term project which aims to improve the quality of end of life care for residents in care homes and for people dying at home. A pre education review of deceased residents’ records is carried out to establish baseline practice, highlight good practice and inform development of educational content. ‘End of Life’ study days are then delivered to care home staff. 8 comparable study days have been delivered as a pilot for home care staff. Resource packs and literature are supplied to each care home/ home care participant. Study days have been highly evaluated by participants. To date, over 600 staff have attended. There is also a reflective evaluation after 3 months. This unique project has allowed interprofessional collaboration and communication between professional groups and organizations: managers, educators, clinicians, pharmacy, specialist palliative care, Care Inspectorate, Scottish Care, local authorities and key stakeholders.

Poster abstracts of the month: April

The SPPC Annual Conference in 2014 featured 40 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Improving the experience for bereaved families by developing a process for issuing death certificates

Author(s) of poster: Norma Langford, Deputy Charge Nurse, University Hospital Cross house; Josaleen Connolly, Macmillan Project Lead, NHS Ayrshire and Arran

I have undertaken an education programme delivering practical palliative care through a distance learning module and placement shadowing members of the various specialist palliative care teams in hospital, community and at the Ayrshire Hospice. The education was provided by the University of the West of Scotland and the overall project was funded by Macmillan Cancer Support. This programme provided me with the knowledge, skills and competence in delivering general palliative care to patients who were admitted to Ward 4C where I work. I was concerned that the process for issuing the death certificate for the deceased sometimes caused unnecessary additional distress for families. Without a death certificate it is difficult for families to finalise funeral arrangements or to begin to inform other agencies that the person’s death has occurred. I felt there were a number of simple changes that could be made. I based my approach on the premise that families’ preferences should determine the way in which they obtained the death certificate. This small change has now become standard practice and has helped to minimise distress for families by creating a simple, clear and compassionate approach for handing over a death certificate to a family member.

Integrated and coordinated discharge planning for palliative patients

Author(s) of poster: Katharine Thompson, Marnie Ferguson, Donna Doogan, Audrey McHugh

Palliative patients are a unique group whose needs change with the advancement of disease. According to National and Local Strategy, patient care should be delivered at home for as long as possible, including care at the End of Life if that is the patient’s wish.

Due to the nature of progressive disease, the window of opportunity for discharge home narrow. Therefore timely, effective discharge planning is essential to ensure that palliative patients achieve discharge home within a suitable timeframe, with the support of a coordinated, individualised care package and with the necessary equipment in place.

Our aim was to develop and deliver an efficient, effective discharge planning process to ensure patients are well supported to remain at home for as long as they wish. We focussed on the following key areas:

•Weekly multidisciplinary team discharge planning meeting

•Development of multidisciplinary discharge preparation checklist

•Dedicated Community Care Team

Funded to provide home care if prognosis is less than 42 days

Team developing skills in care of palliative patients

Individualised, flexible and timely care.

Initial patient and staff feedback regarding the impact of this initiative has been very positive – audit data to evidence this is currently awaited.

Its time to talk about death and dying

Author(s) of poster: Shirley Fife

This poster was designed initially for NHS Lothian Delivering Better Care Conference to support a Before I Die Wall. It helped to set the context as to why we felt it is important for people (public and staff) in Lothian (Scotland) to be more open about talking about death and dying. The poster highlight the reality, evidence and key messages from the Good Life Good Death Good Grief website, as this is a resource we promote within NHS Lothian.

Location, location, location: The Complexity of Preferred Place of Death [PPOD]

Author(s) of poster: End of Life Care Group, St Columba's Hospice

Enabling a person to die in the place of their choice is viewed as a ‘critical contributor’ to the quality of death for the patient/ family(1). The Lothian Managed Clinical Network requires specialist palliative care to audit recording and achievement of PPOD. The End of Life Care (EOLC) Group – a small interdisciplinary team forming part of the Hospice clinical governance structure – has worked together to:

•review the relevant literature

•undertake data collection and analysis of PPOD at regular intervals for all deaths across the hospice in-patient, day-patient and community services over a 12 month period; • support practice development.

Although the documentation and review of PPOD has improved, the achievement of PPOD remains relatively unchanged - with patient preference often unknown. The literature review, audit findings and associated practice development initiatives all highlight the complexity of PPOD choices. Achieving PPOD may be influenced by a range of factors(2). There has been significant learning for the EOLC Group members and a number of future challenges have been identified.

References:

1.Health Improvement Scotland. 2013. Health Improvement Scotland. 2013. Palliative and End of Life Care Indicators.

2.Fields, A. et al. 2013. Discussing preferred place of death with patients. International Journal of Palliative Nursing, 19 (11) pp.558-565

Macmillan rural palliative care pharmacist practitioner project – Mapping of the Current service & Quality Improvement Plan

Author(s) of poster: Prof Marion Bennie, Alison MacRobbie, Dr Gazala Akram, Emma Dunlop Corcoran, Rosemary Newham, Gillian Harrington

The NHS Highland project pilots over a 3-year period (February 2013 – February 2016) the role of one full-time Macmillan palliative care rural practitioner pharmacist to be located within a community pharmacy in the Skye, Kyle & Lochalsh project area, testing the ability of a community based pharmacist to:

•develop community pharmacy capacity to effectively, efficiently and safely support the needs of those in this rural community with palliative care needs regardless of care setting

•improve service provision/co-ordination ensuring opportunities are developed for training and peer support

• provide quality information to support practice.

Year 1 enabled a baseline evaluation of service provision, establishing the role and highlighting service gaps to develop the evidence base for clinical practice within this area with focus on developing rural pharmaceutical care capacity. A single case study methodology, involving multiple healthcare settings within the project area was applied. Three methods were used to maximise data collection and incorporated semi- structured interviews with participant observation (when appropriate), completion of activity logs, service audits and questionnaires.

Core community pharmacy staff are engaging in multi-professional activity in an area where some relationships had previously been strained, supporting co-ordination of patient care and continuity of medicines provision. Recognition of the skills of community pharmacists has increased pharmaceutical care input to patient care, ensuring appropriate product choice, continuity of care provision and for patients and carers a recognition and increasing use of accessibility of pharmaceutical advice. An action plan to provide quality improvement has been developed.

Poster abstracts of the month - February

The SPPC Annual Conference in 2014 featured 40 poster displays, sharing work and research underway across Scotland. Each month, this blog focuses on the content of a few of these posters. This month, we focus on:

Dining with Death Conversation Menus

DNACPR decisions in Lothian Care Homes

Educational Visit to the Crematorium for Hospice Staff

Enablers and Barriers to Volunteering in Care

End of Life Care in Liver Disease

Dining with Death: Conversation menus as a means of educating people about death, dying and bereavement

Author(s) of poster: Mark Hazelwood, Rebecca Patterson

There is growing consensus that palliative care encompasses a ‘health promoting’ element concerned with encouraging openness about death in society so that people are aware of ways to live and support each other with death, dying and bereavement.

A general societal reluctance to engage with these issues makes it harder for clinicians to initiate timely discussions with patients about their end of life care wishes.

However, finding ways to educate wider society in issues relating to death and dying can be problematic in a culture where raising these issues is variously perceived as too morbid, too difficult or too sensitive to mention.

This poster describes the Dining with Death menu and some of the settings in which it has been used, exploring its potential as an experiential learning tool to enable people to become more open about discussing death and dying.

The Dining with Death conversation menu is a folded piece of A4 card, printed with three ‘courses’ of suggested conversation topics, for example ‘Cremation or burial?’; and ‘What would be in your death plan?’.

It can be used to overcome barriers to engagement in death discussions, intriguing participants and engaging them in non-threatening conversations.

 

DNACPR decisions in Lothian Care Homes: An audit of current practice

Author(s) of poster: Alice Radley, Lesley Bull, Anne Finucane, Janet Dobie, Sarah Shepard, Marlis Plumb, Louise Wood, Juliet Spiller

Introduction: Care home residents are often frail with multiple co-morbidities. Advance Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are important in this context to help avoid inappropriate resuscitation attempts at the end of life.

Aim: To examine DNACPR decisions in care homes and compare with six good practice standards.

Methods: An audit of 160 residents from 48 care homes across Lothian, between April 2013 - March 2014. Notes of recently deceased residents in whom death was anticipated were audited.

Results:

• All audited residents had a DNACPR decision.

•No residents with DNACPR forms had resuscitation attempted prior to death.

•50% (n=80) of DNACPR forms had a documented review time frame.

•99% (n=159) of DNACPR forms were signed by a senior clinician within 72 hours of completion. 96% of these were signed by a General Practitioner.

•A clinical DNACPR decision was discussed with 68% of residents or their family.

Conclusions:

•GPs play a central role in facilitating DNACPR decisions in care homes.

•Clearer guidance may be needed regarding the review of DNACPR decisions.

• Discussions with patients and their families about DNACPR decisions are sometimes documented but we highlight an urgent education need in light of a recent Court of Appeal judgement.

 

Educational Visit to the Crematorium for Hospice Staff

Author(s) of poster: Stuart Murdoch, Hospital Chaplain, Dr Erna Haraldsdottir

Background: It is well recognised that in order to care in an open and honest way for those who are dying and their families health care professionals need to be confident in speaking about issues related to the process of dying, and there are educational needs related to this.

Aim: Develop and deliver an education session, informing hospice clinical staff in relation to the actual processes of cremation to enhance their confidence and ability to support and inform patients and families who wish to talk about the option of the patient being cremated.

Methodology: Visits to the crematorium were organised for maximum 10 staff members per visit, with 39 attending in total lasting for 1 hour and evaluated with questionnaires after the visit.

Results: 19 participants filled out and returned the questionnaire. 17 responded that the visit was Very Informative, and 2 Informative. Key themes emerged were a greater understanding of the cremation process, increased confidence to journey with patient & family’s regarding the cremation process, dispelling myths and understanding of the cremation process, opportunity to explore own personal journey regarding death & dying.

Conclusion: It is evident that educational input around the post death process is highly valuable to staff in terms of building their confidence to journey with patients and their families at end-of-life

 

Enablers and barriers to the involvement of volunteering in care

Author(s) of poster: Ros Scott, Richard Carling, Jean Hindmarchx

Background: Together for Short Lives and Help the Hospices undertook a joint project exploring the future development of volunteering. As part of the project data was gathered from hospice professionals and volunteers on the barriers and enablers to the development of volunteering in care. This poster describes the findings and the outcomes of the project.

Findings: Responses highlighted a significant involvement of volunteering in care and a clear commitment to further development in this area. Barriers to the development of volunteering included, staff concerns, lack of resources, ability to deliver training to both volunteers and staff, and providing effective support and supervision. Enablers to the development of volunteering in care included: sharing policy, practice, experience and resources, national initiatives and the development of readily available training packages.

Outcomes: There is clearly a willingness to further develop volunteering in adult and children’s palliative care and some clearly identified requirements. A resource was developed based on these findings which combined guidance, signposting and an evaluation toolkit. Case studies from UK, Netherlands and Austria were used to illustrate throughout.

 

End of Life Care in Liver Disease

Author(s) of poster: Sally Lawton

The key to delivering appropriate palliative and end of life care is the identification, assessment, monitoring and planning of care. We wanted to know if this approach was being used for patients dying of chronic liver disease. The poster displays findings from an audit project that reviewed the notes of twenty patients. It also poses some questions for discussion within the liver service.

Supporting Physical Activity Participation in Palliative Care

Introduction

Research evidence shows that remaining physically active throughout life can improve quality of life and the ability to manage at home including activities of daily living and walking .

Physical activity participation is now promoted by government, healthcare providers, charitable and professional bodies. Research evidence and media awareness of these benefits has led to calls for more community based programmes to assist people living with long term conditions to manage their condition, maintain their quality of life for as long as possible and reduce burden on health service resources. ("Move More" above - Macmillan Cancer support 2014)

Our project to develop physical activity programmes for patients with palliative care needs began in 2010 when staff from Macmillan Day Care in Dundee attended the Scottish Macmillan Conference. We learned of the evidence, presented by Dr Anna Campbell, which exists to support physical activity in the control and prevention of symptoms of people living with a cancer diagnosis.

An exercise programme was already available in Macmillan Day Care for patients with advanced chronic obstructive pulmonary disease (COPD). Due to increased awareness of the benefits of exercise and cancer management, some of the patients with lung cancer were also keen to access the exercise class. The task was working out how to implement this generic class for patients with a wide variety of conditions, all at different stages of disease trajectories.

Methods

The opportunity to develop this idea arose through training offered by NHS Tayside ‘Practice Development Apprenticeship Scheme’. This was an opportunity for staff to engage with practice development, and to develop leadership and putting evidence into practice skills, whilst developing and implementing a practice development idea into a practical reality.

The apprenticeship was supported by the Allied Health Professions Directorate in NHS Tayside, led by Dr Jacqui Morris, AHP Research and Practice Development Lead NHS Tayside. The project was funded by monies from the Chief Health Professions Officer and following a recruitment process 6 AHPs were selected.

We met twice monthly for 6 months, learning about systematic review, evidence synthesis, process mapping, project planning and measurement and data analysis. The aim has been to train us to become leaders of practice development in our own clinical areas and assist others to develop their own ideas in service development.

We completed a literature review of the evidence for physical activity in a palliative care setting and discovered there was evidence showing that physical activity not only improves physical performance in most conditions but can also improve quality of life.

The aim of our project was to improve access to the exercise class for all patients and it was important that this service be offered to all patients based on their need not diagnosis. The challenge for us as clinicians working with such a diverse group of patients at varying stages of their disease trajectories was to ensure the intervention was clinically effective, safe and maximised our use of NHS resources.

It became apparent that the pulmonary and cardiac patients were well educated in their ability to self-manage their symptoms, based on their previous experiences of rehabilitation. However, the cancer patients in general were often fearful of physical activity, deconditioned and frequently reported they had spent the last 2 or 3 years ‘mostly sitting’ after treatment stopped. These patients continued to need healthcare professional support to help ‘pick up the pieces’ of their lives and move on.

We knew evidence existed to support appropriate exercise therapy in palliative care but what we didn’t know was how best to deliver it based on patient choices and preferences. The apprenticeship scheme offered the support and direction to ensure we gathered the appropriate evidence so that when the project completed in Oct 2013, we had the evidence which would help direct the service.

To do this it had been crucial to develop a ‘patient engagement plan’ in which we informed, engaged with and then consulted the patients who accessed the day care service.

We provided education sessions to teach patients the benefits of keeping active, set up focus groups with patients and asked what preferences they had for physical activity based on Macmillan Scotland’s recommendation of exercise groups, walking programmes and Chi Gung as suitable forms of physical activity for this patient group.

As we developed information leaflets about the services on offer, patients were asked for feedback throughout the process to ensure that what we were providing was what the patients wanted and understood. Emotional touchpoints were used and conveyed very powerful feelings from the patients relating to remaining physically active. Many of the patients felt very positive about helping to shape the service and were genuinely pleased to be involved.

Unless individual treatment is indicated, we can now offer exercise therapy in a group. In this way we can manage a full day’s list of patients in 1 ½ hours with much added benefit of group therapy and peer support for the patients.

Results

In line with the evidence, our outcome measures show improvement in functional performance and quality of life. Almost all patients have expressed an interest in walking programmes and Chi Gung and Macmillan has now offered Chi Gung training for staff to provide this on a long term basis. This will likely be beneficial for the frailer patients to avoid long periods of inactivity.

In line with patient preferences that we obtained through the project, we are now developing walking routes around Specialist Palliative Care Services. Paths For All have provided walk leader training for staff for the carefully identified bronze, silver and gold walking routes, to help build up patients levels of activity in a supported a safe environment.

Conclusions

As patients with life-limiting conditions are living longer with better symptom control, trying to find new ways to offer evidence based interventions to cope with this predicted increase in demand for rehabilitation is an on-going challenge.

An equitable service for all patients who require it should be offered as early as possible in the patient pathway, optimising the ‘teachable moment’, usually at diagnosis when health behaviour change can be facilitated most readily.

Now, we aim for 100% screening of physical activity levels of all patients referred to the day care unit and offer advice in line with the Scottish Physical Activity Pathway.

The apprenticeship scheme has turned ‘an idea’ into a sustainable reality now and hopefully long term into the future. There has been lots of learning, lots of hard work and lots of reward to see patients benefit, maximising functional performance, minimising symptoms and promoting quality of life, throughout life.

Mandy Trickett, Macmillan Specialist Physiotherapist,NHS Tayside

Contact: email or telephone: 01382 660111 ext 26170

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