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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: October

The SPPC Annual Conference in 2015 featured 38 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

The Role of the Palliative Care Occupational Therapist in the Non-Pharmacological Management of Breathlessness

Author(s): Dorothy Clark; Yvonne Laing; Loretta Comer; Kristen Bryson; Claire Howie; Vicki Lawson; Marianne Macleod

Intractable breathlessness is a common, devastating symptom of advanced cancer causing distress and isolation for patients and families. It is estimated that the prevalence of breathlessness in all cancers is between 19-64%, as death approaches the prevalence rises to 60-80%. It occurs most commonly in lung cancer where it affects up to 75% of people with primary disease of the lung, bronchus and trachea.

The primary focus of Occupational Therapy is on enabling participation in everyday activities to the best of an individual’s ability, irrespective of health or illness.

This poster draws on the experience of the Palliative Occupational Therapy team who work in NHS Fife Acute services Division. It aims to illustrate the impact non-pharmacological management of breathlessness can have on one person’s ability to engage in everyday occupations.

The tide is turning.......

Author(s): Irene Stevens; Fiona Irvine

A collaborative approach to plan, develop and deliver a bespoke training package for Care Home staff to support a new pilot under the Integrated Care Fund Ideas and Innovation scheme, to provide an Enhanced End of Life Care service in a Care Home in NHS Ayrshire and Arran. The rationale for the service was to enable local residents with end of life care needs the opportunity to be cared for as close to home as possible when remaining in their own home was no longer a viable option. It was crucial that staff felt prepared and equipped to support this service hence the need for a robust training programme. Whilst the new service was the basis for the project the benefits were far greater. Participants experienced a wide range of teaching strategies and trained staff had an opportunity for experiential learning with specialist palliative care teams. Two members of the care home staff had previously undertaken a Macmillan funded education programme on palliative and end of life care and are supporting staff to transfer their skills from the classroom to clinical practice in the role of mentors. Undoubtedly, this will be beneficial for the longer term sustainability of the project.

Upskilling generalists in knowledge and skills in palliative care - a celebration of achievements

Author: Josaleen Connolly

The education project in palliative care started July 2011 and will end in October 2015. This project was funded by Macmillan Cancer Support and enabled each participant to undertake a level 9 module in Practical Palliative Care with University West of Scotland and a 5 day placement shadowing various members of specialist palliative care teams in hospital, the hospice and in the community. On completion of the education programme each participant was supported to undertake a small improvement within their own workplace that showed evidence of their new learning and experiences in palliative care being put into practice.

A total of 91 participants were recruited to the education programme and of these 83 people completed it; 71 people initiated small improvement projects related to palliative care and so far 51 of these have been finished.

As the project approaches its end in October, individuals have achievements to be celebrated but continued efforts are needed to update those involved and those who didn’t participate in the current knowledge and skills to care for those in need of palliative care. Therein lies the challenge for the future.

Volunteering: what does it mean to children's hospices?

Author: Dr Ros Scott

This poster reports on children’s hospice data from a research study exploring the influence and impact of volunteers on UK hospices.

Purpose: Using an innovative theoretical model of volunteering impact the purpose of the research was to explore the influence of:

  • Volunteers on key aspects of the service
  • The differing perceptions of different groups on volunteering and its meaning to the hospice.

Method: Three self-administered online questionnaires were developed, one each for trustees, senior staff and volunteers in UK independent hospices.

Findings: Findings indicated that volunteers were considered to be an integral part of the staff team and were seen as important, not only to the care of children and young people, but also to supporting families. Their contribution was inextricably linked with the financial success of the organisation and they were perceived to have a key role in helping to make children’s hospices more accessible. There was a clear commitment to further developing their involvement in the care and support of children, young people and their families.

Conclusions: Volunteers are in essential part of children’s hospices and their influence and impact is significant at all levels of the organisation.

What Key Elements will feature in the Ayrshire Hospice of the Future?

Author(s): Shona Hynd; Kirsty Cornwall

It is acknowledged that our current accommodation at Ayrshire Hospice will not adequately meet our needs and enhance the service we provide into the future. The poster summarises the first stage of an accommodation needs review currently ongoing at Ayrshire Hospice. A person-centred approach was adopted involving patients, families, paid and voluntary staff. The importance of correlating quantitative and qualitative data was recognised and a mixed methodology was adopted using questionnaires face to face interviews and a focus groups. Opinions were sought from in-patients, day services patients, community patients, family members, as well as paid and voluntary staff. The data reinforced the vision of a building that is easily accessible, iconic, welcoming, calming and uplifting. There was a resounding desire for enablement, choice and person centred care with patients controlling their own environment within a single or shared bed space. The next step in this project will be the appointment of a project management team, who will be tasked with providing a full options appraisal. The findings of this, together with the data already collated by the initial scoping stage, will inform the decision making process as to how the Ayrshire Hospice of the future will look and feel.

Winding Road to Enhance Patients Journey

Author: Morag Lyell

Overview of Macmillan funded TCAT project involving lung cancer patients who are for best supportive care. Highlighting aims of the project and quotes from patients prior to TCAT commencing It contains one photograph and 3 logo's and the remaining part is text.

 

Working Together to Promote Meaningful Connection, Hope and Job Satisfaction through the Namaste Care Programme (developed for people with advanced dementia)

Author: Lorna Reid

 

Situation: Despite the increasing incidence, challenge and cost of dementia care, questions remain about how to improve the quality of living and dying for people with end-stage dementia. In response, ACCORD Hospice has been involved in exploring the impact of Namaste Care™ since 2011.

Background: Namaste Care™ is an emerging multi-sensorial model of palliative care designed to improve the quality of life for people with advanced dementia. It has been demonstrated to: facilitate moments of meaningful connection and engagement between people with end stage dementia and others; promote hope among family members; and increase job satisfaction among care staff.

Assessment: As a result of Accords’ project work local interest in Namaste Care™ was high, but knowledge and understanding was low. Therefore an experiential course (with a placement opportunity) was developed by ACCORD Hospice.

Result: The first four day course was delivered in partnership between ACCORD Hospice, The Ayrshire Hospice and Adams House Care Home in 2014. This resulted in two further Namaste Care™ programmes being launched in care homes (with hospice support). Two more courses are planned over the next 12 months (with the support of Adams House in Renfrewshire and Abbotsford Care Home in Ayrshire). The projection for 2016 is: three new care home programmes to launch in Renfrewshire (with educational support from ACCORD Hospice) and two more programmes to launch in Ayrshire (with educational support from The Ayrshire Hospice). Ayrshire sites include a learning disability unit and a mental health care setting for people with dementia.

Poster abstracts of the month: September

The SPPC Annual Conference in 2015 featured 38 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:

Phase 2 randomised controlled trial of future care planning in patients with advanced heart disease

Author(s)

Kirsty Boyd; Shirley Robertson; Sarah Cudmore; Gill Highet; Lisa Donald; Kristen Haga; Christopher Weir; Scott Murray; Martin Denvir

Integrating cardiology care and palliative care can benefit many patients with advanced heart disease at increased risk of death or hospitalisation. Future care planning provides a framework for discussing a range of palliative care problems with patients and their families. This approach can be introduced at any time during the patient's journey of care and ideally well in advance of end of life care. Future care planning is applicable to a wide range of patients with advanced heart disease and could be delivered systematically by cardiology teams at the time of an unplanned hospital admission, akin to cardiac rehabilitation for myocardial infarction. We have tested this in a successful pilot, controlled trial of an early future care planning intervention consisting of an initial review meeting with the patient plus a family carer by the cardiologist and specialist nurse who offered community follow-up. Liaison with the primary care team promoted early community support and KIS completion. Impact on quality of life was measured using questionnaires and interviews.

Preparing for 'real life' - Reducing Death Anxiety in 3rd year nursing students

Author(s)

Lynn Griffin

Communication around death and dying is challenging. Students are often protected and excluded from these conversations during clinical placement. This reduces the opportunity to learn from other clinicians. Students often report anxiety in how they will have these difficult conversations with patients and their families, once registered. The common theme is one of getting it 'right' and not causing further distress.

The University of Dundee School of Nursing and Health Science has been using a variety of ways to encourage students to talk more openly about death and dying. Innovations showcased by Good Life, Good Death, Good Grief, such as, Before I die Walls, Death Cafes as well as, end of life Clinical Simulations, (underpinned by theoretical modular content) have been used as frameworks/platforms to support and encourage students engagement and learning experience.

Quality Improvement with Nursing Handovers

Author(s)

Laura Johnston; Lesley Ferguson; Elaine McManus

Improving Nursing Handovers in a Hospice In-Patient Unit

Nursing handovers aim to communicate essential patient information between shifts. They have been identified as a communication ‘hotspot’ where inaccurate, missing or untimely information can lead to compromised quality or safety in care.

Handovers in the In-patient unit were long (resource intense), lacked focus, did not closely reflect the patient journey/agenda and produced multiple ‘nurses’ pocket notes’ which had an unknown destination. A Plan, Do, Study, Act (PDSA) methodology was used to improve the handover process.

A handover template was developed to address the problems and then piloted. Clear instructions for how to generate, use and destroy the handover sheet were disseminated to staff prior to implementation.

The template was well received by nurses and encouraged them to be more outcomes-focused and person-centred. The sheet, with its handwritten additions, was physically passed on to the next shift to avoid duplication or inaccurate information and shredded after 24 hours.

Questionnaires were used to gain feedback from nursing staff. Outcomes included: nursing handovers were structured, outcome focused and gave specific attention to patient wishes and goals; reduction of handover time by 50%; patient data in nurses’ pocket notes had been eradicated.

Supporting people with learning disabilities through the palliative care journey- NHS Greater Glasgow and Clyde Learning Disabilities and Palliative Care Pathway

People with Learning Disabilities (PWLD) frequently experience various barriers in accessing effective and appropriate health care, and are often marginalised from regular health services. These barriers, linked with lack of understanding about the palliative care role, add to difficulties accessing palliative care services.

PWLD who have life limiting illness require skilled support from their core team with access to specialist palliative care services being available when needed to support early intervention.

Following a scoping exercise carried out by The Prince and Princess of Wales Hospice in 2011 the award winning project ‘Learning Disabilities and Palliative Care-Building Bridges: Supporting Care’ was established.

As part of the project aim the following objective was set – ‘to develop a care pathway to deliver appropriate and high quality palliative care for PWLD, including guidance referral to specialist palliative care, then to pilot, evaluate and roll out the pathway nationally by 2015’.

The Care Pathway has been developed with multi-professional commitment from both specialist services ensuring holistic care needs of individuals with LD are considered. It is underpinned by evidence based practice and fundamental in promoting the delivery of high quality palliative care for PWLD. The pathway aims to support practitioners across all health and social care settings.

Supportive and Palliative Care Indicators Tool (SPICT): Enabling identification of patients at risk of deteriorating and dying worldwide

Author(s)

Dr Kirsty Boyd

Better care of people dying with one or more advanced conditions depends on primary care teams, hospital specialists and a range of other health and social care professionals making earlier identification part of their routine clinical practice. SPICT highlights readily identifiable general indicators and clinical signs of deteriorating health that mean patients are at risk of deteriorating and dying. Clinicians are prompted to consider assessment of unmet holistic care needs and offer people opportunities to talk about their health problems, the things that matter most to them and their families, and future care planning. SPICT seeks to improve ‘prognostic awareness’ while addressing the ‘prognostic paralysis’ that sometimes means palliative care is only offered when there are few or no other treatment options and the patient is close to dying. Initial and ongoing development is supported by the designated SPICT website and involves a growing network of Scottish, UK and international SPICT collaborators. The EAPC Primary Palliative Care Taskforce recommends SPICT for use across Europe. SPICT is clear, credible and useful in all care settings to promote integrated palliative care.

Talking the Untalkable in Fife

Author(s)

Dr Gordon McLaren; Edward Small; Sheila Matthew; Tracey Blyth; Sarah Nealon  

Aim: A multiagency group was set up in 2011 to encourage a more open approach to death, dying and bereavement in Fife, through raising awareness and encouraging people across society to consider how they can further this agenda themselves.

Method: The group has organised two well attended Fife wide conferences, with participants from different organisations and the public, an all-day drop-in shopping centre event, and a cafe event. Group members produced brief practical information about Wills, Powers of Attorney, Advance Directives, Funeral Planning and death registration. Both conferences drew on the knowledge and skills of participants as members of society encouraging them to have confidence to take forward the agenda themselves.

Results: The most recent conference in November 2014 was very well received. Many attendees indicated they would take forward some actions themselves either at home, in their workplace or in their communities.

Conclusion: The group’s work complements Good Life Good Death Good Grief nationally, providing a local focus to enable wider conversations about openness about death, dying and bereavement in Fife and greater knowledge of practical information. The most recent conference indicated that people felt more able to take forward their own actions in their own communities.

The challenges for volunteering in hospice and palliative care in Europe

Author(s)

Dr Ros Scott

Introduction: Volunteers offer the gift of presence, different skills, experience and time. In some European countries they are and will continue to be essential to providing hospice and palliative care (HPC) services as an integral part of a comprehensive highly professional HPC settings. However, hospice and palliative care faces many challenges and alongside this a new generation of volunteers have different expectations of volunteering and some want to use their skills in different and more meaningful ways.

Based on the work of the EAPC Task Force on Volunteering in HPC, this poster explores some of the challenges for the development volunteering and volunteers in hospice and palliative care in Europe including:

ž The values and principles of HPC and volunteering

ž The influence of culture on volunteering

ž Understanding and recognising the place of volunteers within the multi-professional team

ž Balancing the changing expectations of organisations with those of volunteers

Conclusion: If volunteering is to be developed successfully in the future we must be able to match the changing needs of our patients, their families and our organisations with the changing expectations of the volunteers of tomorrow.

The new West Lothian Community Palliative Care Service: reflections from the first year

Author(s)

Gail Allan; Kate Henriksen; Janice Strachan; Lorna Mackay; Linda Weir; Susan Lawson; Sharron McKay

This poster will describe the first year of the new West Lothian Community Palliative Care Service which was re-launched in Spring 2014. The service is a unique partnership between Marie Curie, Macmillan and NHS Lothian, based in the Macmillan Centre in St John’s Hospital. It will detail the setup of the community service, the current service delivery model, the team who deliver the service, key achievements, challenges and future plans. We will provide feedback from the patients, families, carers and stakeholders. We will also discuss the teams own personal reflections on their first year in post, with a key theme that change has been a positive experience.

Exploring the importance of creative activity to palliative care

The successful creative arts service at The Prince & Princess of Wales Hospice is opening its doors to figures from the world of arts and heatlhcare.

To celebrate Creativity and Wellbeing Week, from June 13 to 19, the relevance of creative activity to palliative care will be explored by invited guests, from artists working within healthcare to palliative care professionals.

The idea is that the workshops, which offer guests the chance to explore different art materials and mark-making techniques, will open conversations between professionals with an interest in palliative care, arts and health.

John Jones, 54, from Govan, Glasgow, has been a day services patient at Glasgow’s Hospice since early 2015 and rediscovered a long-forgotten love for art.

“I always enjoyed art at school and my teachers wanted me to take it further but I left school and started work,” he said. “I went on to work at the Rogano restaurant, I started off as a page boy, and was then a waiter and went on to do bar work.”

He works with watercolour crayons to create bright, lively pieces of artwork, two of which hang on the walls of the hospice’s art room.

"I enjoy the peace and quiet to work in the art room, it takes your mind off other things that are going on in your life,” he added. “I look forward to going to the art room, it give you a different interest. You try not to think about what’s going on in your life and carry on as normal. The art room takes your mind off things.

“The artists are excellent, they give you help and advice. I’ve got a few pieces at home now and some on the walls of the art room.

“It is uplifting, I’d definitely recommend it. A lot of people come into the hospice and it’s not for them but many find they’re good at it and you’d think they had been drawing and painting all their lives. It just seems to come naturally.”

John Kelly, 77, from Govanhill, Glasgow enjoys painting landscapes.

“I’ve been coming to day services at the hospice every week for about six months. Staff asked me if I wanted to go to the art class and I thought I’d give it a try,” he said. “I like painting landscapes and architectural pieces. One of the first ones I did was of the monastery on the isle of Mull, it had a lot of intricate work.

“I enjoy the company in the class. I don’t get out much at home, there are things I used to do that I can’t now. The class is relaxing.”

Initially set up in 2003 to address the absence of art in palliative care in Scotland, the artists who staff the project worked from a table in the corner of day services. It has grown and thrived to become a fully integrated key service with its own art room.

The creative arts service includes visual art and creative writing workshops and is open to all patients, family members and carers registered at the hospice.

There are patient art workshops, in which individual projects are undertaken within a group, as well as private family art workshops for adults and children, a carer’s drop-in workshop, and individual patient creative writing workshops.

The service aims to give people the opportunity to develop their creativity, express themselves and try something new while engaging in a relaxing and meaningful activity during a difficult time in their life.

It gives people back some of the control they have lost through illness, disability and caring responsibilities. Unlike art therapy the intention is never to analyse or explore issues raised by the creative process.

Most people who access the creative arts service at the hospice have had no previous experience, or have been forced to give up creative pastimes through ill health. Their attendance might offer respite for the patient, family member of carer, a therapeutic activity or a focused activity with their peers.

All sessions are patient-led and supported by qualified practicing artists who have extensive experience in the arts and health, specifically in palliative care, and have ongoing art practices of their own.

“When we meet people they have often lost a lot of confidence and are going through a very difficult time. In the art room they are in charge of every mark they make. We are there to encourage and support participants to develop their own creative practice as artists in their own right, where ideas and skills can grow over time,” said artist Jeni Pearson.

“It can offer those involved an increased sense of wellbeing. Art has the ability to help us view the world through new eyes. I have heard so many of our participants say that they look at things differently now and for many it can be a life-enriching experience, and this has to be of great importance within the context of palliative care.”

The hospice is currently fundraising to build a new hospice in Glasgow’s Bellahouston Park that will offer the very latest techniques in palliative care. Art will be an integral part, with gallery space for patients’ work.

By: Angela McManus, Communications manager, Prince & Princess of Wales Hospice

Picture credit: Nick Ponty

Enhanced End of Life Care in Ayrshire Nursing Home

The Abbotsford Nursing Home in Ardrossan has been providing meaningful and sensitive care for its residents for almost 30 years in North Ayrshire.

Recently, we have developed a new service, Enhanced End of Life Care, for when a person is no longer able to be supported at home (for instance, due to carer fatigue), or the person has been admitted to hospital but would prefer his/her place of care to be closer to home, family and friends.

In a close working partnership with District Nursing, G.P.'s, NHS Specialist Palliative Nurses and The Ayrshire Hospice Specialist Palliative Care Community Nurses, we respond to provide a comprehensive form of palliative care in an informal, relaxed environment. Our holistic approach includes pain and symptom management and nursing care in a dedicated en-suite bedroom

facility, as well as accommodating the person's spiritual, emotional and/or social support needs.

Our Enhanced End of Life Care service has been developed with strong support from Specialist Palliative Nursing teams at The Ayrshire Hospice and the NHS, local District Nursing teams and Macmillan Cancer Support. This collaboration is providing support and assistance both operationally and with additional knowledge and skills development for our team in Abbotsford.

It is free to the service user and is funded through the Scottish Government's Integrated Care Fund. We were awarded this funding by the North Ayrshire Health & Social Care Partnership and it is currently for one dedicated en-suite room facility. This initiative will enable local people in the advanced stage of their illness to be cared for twenty four hours a day in closer proximity to their family, friends and within their community. The service can be offered to people who would

prefer this choice and where their life expectancy is limited. However, should the person's symptoms stabilise, it is anticipated that a return to home will be a positive outcome, allowing the service to become available for another individual and his/her circle of friends and family.

If you would like more information on this new, innovative service, please contact Louise Pettigrew, Registered Manager, or her Depute, Georgette Langan, on 01294 602915 or by email.

By Nigel Wanless, Abbotsford Nursing Home

Macmillan Pharmacy Service Annual report

The Macmillan Pharmacy Service has published its Annual Report for 2014-15.

The service has now been rolled out across all Health and Social Care Partnerships within Greater Glasgow and Clyde. The expansion began in August 2013, following successful evaluation of the Macmillan Pharmacy Facilitator pilot project (2009-2013), by the University of Strathclyde.

The overarching aim of the service is to support community pharmacy and the wider primary care health and social care team to advance person-centered, sustainable, high quality, safe and timely pharmaceutical palliative care (PC) services as close to home as possible for patients, carers and families.

The idea is to shift the balance of care away from the acute sector to a more financially sustainable community based services that will better serve the growing ageing population, reduce pressure on out-of-hours services and avoid emergency hospital admissions.

The annual report is available for download here: Macmillan Pharmacy Service Annual Report.

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