Scottish Partnership for Palliative Care: Update

Welcome to Update, a monthly round-up of news relevant to palliative care in Scotland, brought to you by the Scottish Partnership for Palliative Care.

Policy

Changes at Scottish Government

Tim Warren has moved to a new role, and Helen Stevens has now taken over the role of Palliative and End of Life Care Policy Lead at Scottish Government. We wish Tim all the best in his new role supporting the development of the National Digital Platform. Eleanor Mitchell now heads what was previously called the Integration Directorate. The directorate has been reconfigured to include the primary care division and is now called Community Health and Care.

Scottish Parliament inquiry: Primary Care for the next generation

The Scottish Parliament Health and Sport Committee are running an inquiry looking at the future of Primary Care in Scotland. The first stage of the inquiry completed in June 2019, and focused on gathering views and experiences from the public and especially people who use primary care services across Scotland. A report of Phase 1 of the inquiry was published in July. The Committee is now seeking views on the future development of Primary Care in Scotland, via a call for written views, and a series of evidence sessions. The deadline for written views is 28 August.

Organ donation opt-out rule to commence in Autumn 2020.

The Scottish Government has announced that legislation to introduce an opt-out system of organ and tissue donation for deceased donors will come into force in Autumn 2020. Under the new law, if an adult does not opt-in or opt-out of donation they may be deemed to have authorised donation for transplantation. Prior to the enacting of the legislation, there will be a twelve-month public awareness campaign providing more information about what the changes mean and the choices families will have.

Scottish Government publish toolkit on devolved social security benefits.

On 19 July, the Scottish Government Social Security Directorate published a Stakeholder Engagement Toolkit on the devolved social security benefits. The toolkit contains an overview of the delivery of devolved benefits, delivery timetable, factsheets and information on spreading the word about devolved benefits. Social Security Scotland is running a series of roadshows to provide information about the new funeral support payments.

Funeral Director Code of Practice: Consultation

The Scottish Government are consulting on the Funeral Director Code of Practice. The closing date for responses is 20 September 2019.

Parliamentary Questions

Mark McDonald MSP has asked several parliamentary questions relating to palliative care. The questions and answers can be viewed in full on the Scottish Parliament website (weblinks provided below).

S5W-23769: To ask the Scottish Government what its position is on all medical practitioners being required to have an understanding of palliative care, and how it is ensuring that undergraduate medical students receive appropriate education on this issue.

S5W-23770: To ask the Scottish Government when the Scottish Research Forum for Palliative and End of Life Care last met, and when it will next meet.

S5W-23771: To ask the Scottish Government what steps it is taking to increase research into palliative and end of life care, and what funding it has allocated to this in each of the last three years.

S5W-23772: To ask the Scottish Government what steps it is taking to ensure that integration joint boards engage adequately with third sector partners at the earliest stages of service commissioning in order to ensure that their views are considered as part of the commissioning process.

Transforming Cancer Care Programme

The Scottish Government and Macmillan Cancer Support are investing £9 million each into the Transforming Cancer Care programme. The programme aims to offer every newly diagnosed cancer patient in Scotland a support worker who will carry out an assessment to understand their needs, before directing them to expert support from benefits advice to counselling.

Financial support for charitable hospices in England.

The UK Government has announced £25 million of financial support for charitable hospices in England.

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Practice

One Step at a Time – A Learning Resource

Faith in Older People has published One Step at a Time, a learning resource to help faith communities build a more supportive environment for people with dementia and their families.

Poster abstracts of the month

Each month our blog focuses on a few of the posters displayed at previous SPPC Annual Conferences. This month we look at six posters from the 2018 conference:

Sharing your practice

The SPPC hosts a 'sharing current Scottish practice' blog as a platform 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 email: rebecca@palliativecarescotland.org.uk

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Academic and Research

Acute Hospitals Outcomes Report

The University of Aberdeen, NHS Healthcare Improvement Scotland and the British Geriatrics Society have published a report providing an overview of outcomes of acute geriatric medicine services in Scotland.

Future Transitions in Palliative Care programme

The report and outcomes of the Future Transitions in Palliative Care programme have been published. You can access the full report here: Full Report. This webpage provides a summary version of the report, videos and materials produced from the whole project.

Welsh Government publish interim findings from Bereavement Scoping Study.

The Welsh Government has published the interim findings from a Bereavement scoping study in Wales. The Welsh Government will publish the final report in October.

National End of Life Intelligence Network (England)

The National End of Life Intelligence Network (England) has released a new report, entitled Palliative and end of life care: hospital deaths 2006 to 2017.

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SPPC Annual Conference: Last chance to book

Provocation, innovation and eternal truths

Scottish Partnership for Palliative Care Annual Conference

Wednesday 18th September 2019, Royal College of Physicians Edinburgh. Book here.

The conference will feature a range of breakout and plenary sessions, poster display and rapid-fire session presenting new work of interest from across Scotland.

Plenary Sessions

Ask not what we can do for death, but what death can do for us

Heather Richardson, Joint Chief Executive, St Christopher's Hospice
Jake Garber, Service Designer and Systems Thinker, WIGS

As a sector, we hold a powerful position within the national consciousness as the practical and symbolic carers of the dying. So far we have struggled to leverage this position to create the changes that are needed in the sector and in wider society. Research on ‘framing’ highlights how familiar patterns of communication and action are maintained, suggesting one way in which progress is blocked. So what if we start with the frame that death is the opportunity? What becomes possible then?

What’s the best way to care?

Tony Walter, Sociologist and Emeritus Professor, Centre for Death & Society, University of Bath

At end of life, what is the role of bio-medicine and institutions such as hospitals and care homes? Are critiques of medicalisation and institutional care overplayed? Do palliative care and compassionate community have all the answers?

Building organisations which sustain rather than damage employee well-being

Michael West, Professor of Organisational Psychology, Lancaster University Management School

Drawing on research, practical examples and his Co-Chairing of the current GMC review of doctors’ mental health and wellbeing, Michael will describe ways in which organisations can respond to current pressures without sacrificing the wellbeing of employees.

To be Professional is to be Human: attending to our soul in palliative care provision

Ewan Kelly, Freelance Facilitator, Speaker and Pastoral Supervisor

This session will explore the significance of meaningful work for our wellbeing as people as well as practitioners, including how we respond when our deep desire to provide the right care is in tension with aspects of our work context. Ewan will share thoughts, practical strategies and lead a gentle reflection to close the day.

Download the conference programme here: Conference Programme

Book a place here: Bookings and prices

Check out the conference webpage here: SPPC Annual Conference 2019

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SPPC News

Sad News

We were sad to learn that Margaret Stevenson, the SPPC’s first Director, died in mid-July. Margaret joined the Partnership as Secretariat Manager in August 1991, within months of the Partnership’s inaugural meeting. Margaret led the SPPC team for 11 years until her retirement in 2002. The founding Chair of SPPC, the late Tom Scott, said of Margaret that she was “the embodiment” of the Partnership and responsible for “…..work always of such high quality…recognised and valued throughout Scotland – and beyond!”. Another chairperson recalls how Margaret skilfully brought all Scottish palliative organisations to the table and kept them cooperating, for the benefit of patients country-wide. She was quick off the mark to set up the Palliative Care Cross Party Group in the brand new Scottish Parliament. A colleague throughout that first decade of the Partnership remembers Margaret as a very kind, lovely and considerate person who was also very astute and focussed. Margaret played a crucial role in establishing the direction, credibility and reputation of the Partnership. Examples of the seminal work of the Partnership during Margaret’s stewardship include: Palliative Cancer Guidelines; Registered Nursing Homes and People with a Terminal Illness - Guide to Good Practice; Core Standards for Specialist Palliative Care; Hospice Data Systems and the first Directory of Palliative Care Services in Scotland. Her work undoubtedly benefitted the lives of many thousands of people in Scotland and beyond. Margaret enjoyed a busy and active retirement. She was a Trustee of the charity Faith in Older People. Having always been a keen gardener she became a volunteer guide at the Royal Botanic Garden in Edinburgh.

To Absent Friends: Small Grants Fund

We are running a small grants fund to support participation in this year's To Absent Friends festival of storytelling and remembrance, running from 1-7 November. The grants are for small organisations to undertake activities within their community that provide public opportunities for storytelling and/or remembrance of people who have died. Applications are open until 23 August.

SPPC Blog

“I was close to burnout but was too afraid to admit this to myself never mind anyone else… That is what the QNIS programme has done for me. It has made me stop running and made me pay attention to myself and value my own needs.”

Thanks to Caroline Porter, Diana Children’s Nurse at CHAS for sharing her experiences of becoming a Queen’s Nurse on the SPPC blog.

The Truacanta Project: Shortlisted Communiites

Eleven communities have been shortlisted to take part in the Truacanta Project, a Macmillan-funded, SPPC run project which will support up to four communities to develop community-led projects to improve local experiences of death, dying, loss and care. Caroline Gibb, Truacanta Project Manager is working with each of these eleven communities to support them to develop their vision and put together a more detailed application to be a part of the project.

Deborah Ritchie, co-chair of North Berwick Coastal Health and Wellbeing Association, who have been regular participants in the To Absent Friends festival and Good Death Week has written a blog for us about the steps they have taken towards being part of The Truacanta Project.


New Member of Staff

We’re pleased to welcome Caroline Sime to the SPPC team. Caroline is leading on the second phase of the Building on the Best project. A joint project by the Scottish Partnership for Palliative Care, NHS Boards and Macmillan, Building on the Best is a programme which aims to bring health professionals, patients, carers and families together to improve how hospitals support people who may be approaching the end of their life.

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Other News

Churchill Fellowships

The Churchill Fellowships are now open for applications from any UK citizen aged 18 or over, regardless of qualifications, age or background. This year, Palliative and End of Life Care is one of the awards categories. The deadline for applications is 17th September 2019.

Compassionate Care: 3 week online course

Enrolment is now open for this 3-week online course which explores the impact of compassionate care and how to implement behaviour change tools and techniques organisations. By enrolling now, participants can also opt to be part of a study looking at whether this platform can be used to change behaviour and practice. More information is available here: weblink. The course starts on 9th September.

In the media

The National: Edinburgh Fringe Initiative gets audience to think about death

Press and Journal: MSP writes to health secretary over care cut

Press & Journal: More than 500 patients die in north-east hospitals despite being well enough to leave

The National: Best of the Death on the Fringe Collection

Stornoway Gazette: NHS Western Isles addresses funding for Bethesda palliative care

 

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And Finally...

In each edition of Update we try to finish with something a little bit different or thought-provoking. This month we share Not Quite Right, a blog looking at mistakes on tombstones.

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Courses and Events

Scottish Partnership for Palliative Care Annual Conference 2019

18 September 2019, Edinburgh. More information is available here: weblink.

Community Palliative Care; Wholly Holistic, Or More To Do?

Organised by NHS Tayside. 28 August 2019, Dundee. More information is available here: weblink.

Homelessness and Palliative and End of life Care

Cross Party Group in the Scottish Parliament on Palliative Care. 4 September 2019. More information is available here: weblink.

Introduction to Palliative Care

Organised by St Margaret of Scotland Hospice.Clydebank. 5 & 12 September 2019. Email Margaret Donnelly for more information.

Compassionate Care: Getting it Right

Enrolment is now open for this 3-week online course which explores the impact of compassionate care and how to implement behaviour change tools and techniques organisations. By enrolling now, participants can also opt to be part of a study looking at whether this platform can be used to change behaviour and practice. More information is available here: weblink. The course starts on 9th September.

End Stage Chronic Liver Disease: a look at the last year of Life

Organised by St Margaret of Scotland Hospice. 17 September 2019, Clydebank. To book a place email margaret.donnelly@smh.org.uk

In conversation with Kathryn Mannix

Organised by Marie Curie, 2 October 2019, Edinburgh. Mandy Rhodes, Managing Director of Holyrood Communications and editor of Holyrood Magazine in conversation with Kathryn to discuss the experiences she shares in her book, With the End in Mind. Booking is available here: weblink.

Caring Community Seminar

Organised by Accord Hospice. Paisley, 8 October 2019. More information is available here: weblink.

British Lymphology Society Conference

7th & 8th October, Staffordshire. More information is available here: weblink.

Dementia End of Life Care at Home: Bereavement and Loss

Organised by Hope at Home, Ardgowan Hospice and Abbeyfield. 8 October 2019, Ardgowan Hospice, Greenock. More information is available here: weblink. For programme or other enquiries please email: ceo@ardhosp.co.uk

Looking to the future of social care and supporting those with a terminal illness and approaching end of life

Organised by the Scottish Non-Malignant Palliative Care Forum and The Alliance. 9 October 2019, Glasgow. More information is available here: weblink.

Future directions of hospice care: IPU or ITU?

Organised by Marie Curie and the Royal Society of Medicine. London, 14 October 2019. More information is available here: weblink.

Compassionate Communities in Action: Reclaiming ageing, dying and grieving.

6th Public Health Palliative Care International Conference. 13-16 October, Blue Mountains, New South Wales, Australia. More information is available here: weblink.

Reducing & Managing Pressure Ulcers at the End of Life: Fourth National Conference

Organised by Healthcare Conferences UK. 14 October 2019, London. More information is available here: weblink.

Clinically Assisted Nutrition and Hydration Supporting Decision Making: Ensuring Best Practice

Organised by Healthcare Conferences UK. 14 October 2019, London. More information is available here: weblink.

Starting with the end in mind; A realistic approach to bereavement and resilience

Organised by NES. 11 November 2019, Edinburgh. More information is available here: weblink.

National Care Home Conference, Exhibition & Awards 18

Organised by Scottish Care. 16 November, Glasgow. More information is available here: weblink.

Scottish Cancer Conference

Organised by Cancer Research UK. Monday 18 November, Glasgow. More information is available here: weblink.

Building and sustaining compassionate communities: The role of the Churches in supporting people with end of life matters

Organised by Faith in Older People and the Scottish Partnership for Palliative Care. Wednesday 27 November, Edinburgh. More information is available here: weblink.

Collaborative Learning Event: Young Adults in Transition

Organised by the Prince & Princess of Wales Hospice. 28 November 2019, Glasgow. More information is available here: weblink.

St Columba's Hospice/Queen Margaret University programmes of study

St Columba’s Hospice in collaboration with Queen Margaret University provide two programmes of study:

  • The Graduate Certificate in Palliative Care
  • The MSc Person-centred Practice (Palliative Care)
  • Postgraduate Diploma Person-centred Practice (Palliative Care – Advancing Clinical Practice)

Further information about the modules which are running 2019/20 is available here: weblink. If you would like to discuss your learning need/mode of study please contact: Janice Logan. If you have any difficulties applying via the Queen Margaret University website, please contact Sue Thorburn on 0131 551 7710.

St Margaret of Scotland Hospice courses

A full list of courses delivered by St Margaret of Scotland Hospice is available on their website.

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