Scottish Partnership for Palliative Care: Update

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

Policy

Health committee focus on palliative care

The Scottish Parliament Health and Sport Committee has begun work to frame an inquiry into palliative care later this year. This was an agenda item at the Committee's 28th April meeting, where it took evidence on this subject from Paul Gray, Director General Health and Social Care and Chief Executive, NHSScotland; Janice Birrell, Senior Policy/Implementation Manager, and Craig White, Divisional Clinical Lead, Scottish Government.

Strategic Framework for Action for palliative and end of life care

Professor David Clark, Director of the School of Interdisciplinary Studies at University of Glasgow will act as Consulting Editor for the Scottish Government Strategic Framework for Action for Palliative and End of Life care. Professor Clark will work with Professor Craig White, Divisional Clinical Lead at the Scottish Government, the National Advisory Group and the Scottish Government policy team who will be considering various views and feedback on the focus of the Strategic Framework for Action.

A series engagement events are being held to discuss the development of the framework:

5th June – The Royal College of Physicians of Edinburgh

12th June – City Halls, Glasgow

14th July – Sir Duncan Rice Library (Aberdeen University), Aberdeen

Death certification

Arrangements for death certification and registration in Scotland changed on 13 May 2015. One of the main changes is the establishment of the Death Certification Review Service which is run by Healthcare Improvement Scotland. The review service checks on the accuracy of a sample of Medical Certificates of Cause of Death.

Healthcare Improvement Scotland provide more information about the Death Certification Review Service here: weblink. NHS Education Scotland have launched a new website which includes further information for staff who might be involved in completing MCCDs.

Assisted Suicide (Scotland) Bill

Last month, the Scottish Parliament Health and Sport Committee published its Stage 1 report on the Assisted Suicide (Scotland) Bill. Patrick Harvie MSP issued a response to the Committee’s report. The Scottish Parliament debated the Assisted Suicide (Scotland) Bill on Wednesday 27 May 2015, and voted to reject the Bill by 82 votes to 36.

Together for Short Lives Strategic Plan

Together for Short Lives have published Quality of life, quality of death: Leading change for children’s palliative care, their new Strategic Plan for 2015-18. The plan identifies five key priority areas for the next three years: providing information to families; improving the quality of life and death for children and young people; strengthening the commissioning and sustainability of services; transforming transitions for young people and increasing community engagement and volunteering in children’s palliative care.

Back to top

Practice

Establishing a new Scottish Forum for Clinical Nurse Specialists

Interest has been expressed in establishing a new Scottish Forum for Clinical Nurse Specialists working in an advisory capacity in hospital palliative care teams in the acute setting. The purpose of the group would be to share knowledge and skills, provide a forum for national audits, improve patient outcomes and provide a forum for discussion on national drivers in palliative care. Is this something you or a colleague would be interested in being part of? If so, please contact Shona Dickson, Macmillan CNS in Palliative Care at Ninewells Hospital.

Tell Us Once

Tell Us Once (TUO) is a cross-government service that enables people to report a death just once, and have that information transferred to all relevant parts of local and central government. Tell Us Once Delivery Partnerships (TUODP) are keen to hear:

  • ideas on how to promote the service locally
  • whether there is scope for a customer information flyer to become part of the suite of documents within local bereavement packs
  • from anyone interested in playing a part raising awareness of the new service.

More information is available here or by contacting Michael Murphy.

Standards for better child healthcare

Facing the Future: Together for Child Health has been developed by the Royal College of Paediatrics and Child Health (RCPCH), the Royal College of General Practitioners (RCGP) and the Royal College of Nursing (RCN). These standards aim to improve healthcare services for children and young people with life-threatening and life-limiting conditions when they are unwell, and ensure that specialist child health expertise and support are available to them when they need it and where they are known.

Sharing Scottish Practice

This month the SPPC Sharing Current Practice blog features five posters displayed at the 2014 SPPC annual conference:

Back to top

Academic and Research

Call for Posters– SPPC Conference

Are you involved in an interesting project or in an area of work that you would like to share with others in Scotland with an interest in palliative care? Why not apply to display a poster or exhibition stand at this year's SPPC Annual Conference? The annual poster exhibition is an essential part of learning and sharing best practice at the conference. If you are interested in submitting a poster for display, please contact Pauline Britton for a proposal form for completion. Those bringing a poster to the conference should also be prepared to give a brief 5 minute presentation on their poster should it win the People’s Poster Vote on the day. The closing date for submissions is Friday 21 August 2015.

Call for Papers Now Open: Palliative Care Congress

Abstracts are now being accepted for the 11th Palliative Care Congress, which will take place in Glasgow, 9-11 March 2016. The deadline for submission is 25 September 2015.

Call for abstracts: Strathcarron Hospice Conference

Abstracts are now being accepted for Strathcarron Hospice’s conference New Directions in Palliative Medicine: Beyond the Diagnosis, which will take place 8-9 October 2015. Closing date for abstracts is 29 May 2015.

Call for Abstracts: Public Health conference

Abstracts are now being accepted for the Faculty of Public Health Scottish Conference 'Securing Scotland's Health' on 5 & 6 November 2015 at Peebles Hydro Hotel.

Life after the Liverpool Care Pathway (LCP): A qualitative study of critical care practitioners delivering end-of-life care.

Venkatasalu, MR. Whiting, D & Cairnduff K. Journal of Advanced Nursing. DOI: 10.1111/jan.12680 Full article is available here: weblink.

Edinburgh Primary Palliative Care Research Group

The University of Edinburgh Primary Palliative Care Research Group has published a pamphlet providing a helpful summary of its current work and research interests.


Back to top

Public and Patient Experience

Managing end of life medications at home—accounts of bereaved family carers: a qualitative interview study

Sheila Payne, Mary Turner, David Seamark, Carol Thomas, Sarah Brearley, Xu Wang, Susan Blake, Christine Milligan BMJ Support Palliat Care 2015;5:181-188 doi:10.1136/bmjspcare-2014-000658

Objective: To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England. The full article is available here: weblink.

Back to top

Web News

What to expect when someone you care about is dying

The NHS Inform Palliative Care zone has been refreshed to provide new information about what to expect when someone is dying. This new online resource is designed for carers, families and friends of dying people. It aims to answer some of the questions people may have about what happens in the very last days and hours of a person's life such as:

  • What happens when someone is dying?
  • Will a person's pain get worse as they get closer to dying?
  • Should I be worried?
  • What can I do to help?

SAD website

NHS Education Scotland have launched a new website which aims to provide a resource bank to support healthcare staff working in the NHS with patients, their carers, and families before, at, and after death. This website also aims to provide a community of practice, to facilitate the sharing of information, research, and effective models of care amongst healthcare staff.

Back to top

SPPC News

Position paper on future of palliative care in Scotland

The SPPC is developing a position paper on the future improvement of palliative and end of life care in Scotland. A Council subgroup is working with SPPC staff to develop the paper, and will undertake email consultations at each stage in the process to seek views of SPPC member organisations. Drawing on the diverse perspectives and expert opinion represented within our membership, we aim to produce a paper which supports and informs the Scottish Government as it develops its Strategic Framework for Palliative and End of Life Care.

A public health approach to palliative care

The recent International Conference on Public Health and Palliative Care in Bristol provided opportunities to showcase some of the work of Good Life, Good Death, Good Grief. Abstracts of our presentations and poster at the conference have been published in the April edition of BMJ Supportive & Palliative Care journal (Supplement 1):

  • Good Life, Good death, Good Grief: Changing Scottish Culture
  • To Absent Friends: A People’s Festival of Storytelling and Remembrance
  • Beer Mat Chat

Information about what to expect when someone is dying

The SPPC has worked with NHS 24 to refresh the NHS Inform Palliative Care zone, to provide new information about what to expect when someone is dying. This new online resource is designed for carers, families and friends of dying people. It aims to answer some of the questions people may have about what happens in the very last days and hours of a person's life such as: What happens when someone is dying? Will a person's pain get worse as they get closer to dying? Should I be worried? What can I do to help?

Thanks to the National Council for Palliative Care, Sue Ryder and Hospice UK for their kind permission to reproduce content from their publication What to expect when someone important to you is dying, which can be downloaded or purchased from the NCPC website.

Changes to Council

Welcome to Mandy Yule, Chief Executive of Ayrshire Hospice, and Trisha Hatt, Senior Macmillan Development Manager (Scotland) at Macmillan Cancer Support who have recently joined the SPPC Council. Jackie Lindsay and Maria McGill recently stepped down from the SPPC Council, and we thank them for their work as Council members over the years.

Fundraising

The SPPC is a charity, and we are pleased to accept donations to fund our work. If you would be interested in making a donation or organising a fundraising event, please get in touch.

SPPC Annual Conference 2015: From Worms, Butterflies and Veils to Outcomes

Bookings are now open for the Scottish Partnership for Palliative Care Annual Conference, Scotland’s premiere event for anyone with an interest in palliative and end of life care. The conference will feature a mix of delegate interaction and high quality speakers, including:

Speech and Q&A by Cabinet Secretary for Health, Wellbeing and Sport Shona Robison MSP.

The Worm at the Core –exploring death anxiety as the hidden driver of human behaviours and its implications for the practice of palliative care, for raising public awareness of end of life issues, and for leading lives of courage, creativity and compassion. Sheldon Solomon,Professor of Psychology at Skidmore College in Saratoga Springs, New York.

Lifting the Veil on Breathlessness – Many people with refractory breathlessness (persistent despite optimal management of the underlying condition(s)) continue to manage this very common and difficult symptom largely without recourse to clinical help, despite recent advances in evidence and practice. What is to be done? Miriam Johnson, Professor of Palliative Medicine, Hull York Medical School.

Everyone’s Talking About Outcomes – but what precisely are they, why are they important; what and how should we measure in palliative and end of life care? Fliss Murtagh, Reader and Consultant in Palliative Medicine, Kings College London.

For more information and to book your place visit the website. Group and member discounts are available, and a call for posters has been announced. The conference will take place on Wednesday 23 September 2015, Royal College of Physicians of Edinburgh.

Back to top

Other News

Dying Matters Awareness Week

Various events took place across Scotland to mark Dying Matters Awareness week, which ran from 18 – 24 May, including:

Time for Reflection

Maria McGill, Chief Executive of the Children’s Hospice Association Scotland, presented the Scottish Parliament’s Time for Reflection on 12th May.

BMA explores future of end of life care

The British Medical Association (BMA) is holding a series of events, exploring end-of-life care and physician-assisted dying. It has invited a random selection of doctors, medical students and members of the public to 21 events across the UK, which begin in May.

Award –winning pharmacy service

The Macmillan Pharmacy Service has won the national Scottish Pharmacist Award for Innovation and Change in Pharmacy Practice 2015. The first of its kind in the UK, the Macmillan Pharmacy Service covers all 291 community pharmacies in Greater Glasgow and Clyde and is jointly funded by NHS Greater Glasgow and Clyde and Macmillan Cancer Support. The service works alongside an existing Community Pharmacy Palliative Care Network and other community care services to help support palliative care patients with a life-limiting or life-threatening illness.

More information about the service is available here: weblink

A National Palliative Care Resources folder based on the folder developed during the project is available here: weblink

Judi Dench becomes patron of NCPC (England)

The actress Dame Judi Dench, has become a patron of the National Council for Palliative Care (NCPC).

In the media

The SPPC does not undertake a comprehensive media monitoring service. Listed below are some of the stories relevant to palliative and end of life care that have appeared in the media over the last month. For more media coverage relating to palliative and end of life care, check out the eHospice website.

BBC News: End-of-life care letting people down - health ombudsman

Church of Scotland: Church urges MSPs to improve end of life care

eHospice: Parliamentary report scrutinising Scottish assisted suicide bill published

ehospice: Booking now open for the Scottish Partnership for Palliative Care Conference

The Herald: Breaking new ground for the Prince and Princess of Wales Hospice

The Herald: GP shake up plan to give more time with patients

The Herald: What is dying like? New info published by the NHS

The Scotsman: A good death is everyone’s right

The Scotsman: NHS Lanarkshire rapped for unreasonable failings

The Sunday Times: MND sufferers demand their voices are heard

Back to top

Courses and Events

From Worms, Butterflies and Veils to Outcomes

Bookings are open for this year's Scottish Partnership for Palliative Care Annual Conference, taking place on Wednesday 23 September 2015 at the Royal College of Physicians Edinburgh. Group and member discounts are available.

End of Life Care: The Principles

This module is available to health and social care professionals. The overall aim of the module is to examine the core principles underpinning the delivery of high quality end of life care and raise awareness of death, dying and bereavement from a professional and societal perspective. Dates of delivery 2015: Trimester C: 27th May, 3rd, 10th, 17th & 24th June 1000—1630; Trimester A: September 23rd, 30th, October 7th, 14th & November 4th 1000—1630 To register your interest or for further information please contact Angela Miller or Margaret Donnelly.

Dementia Awareness Week Conference: Global Progress; Local Impact

Glasgow, 1 June 2015, more information is available here: weblink.

The Dementia Challenge 2015: Defeating the Disease

London, 2nd June 2015. More details are available here: weblink

Association for Continence Advice Conference and Exhibition 2015

4 and 5 June 2015, Hilton Brighton Metropole. More information is available here:weblink.

CDAS Conference 2015: Death and its Futures

5-6 June 2015, University of Bath. More information is available here: weblink

Strategic Framework for Action engagement events

The Scottish Government has announced a series engagement events to discuss the development of a Palliative and End of Life Care Strategic Framework for Action:

5th June – The Royal College of Physicians of Edinburgh

12th June – City Halls, Glasgow

14th July – Sir Duncan Rice Library (Aberdeen University), Aberdeen

Aiming High

The three Ms and best practice for supporting your patients with Huntington’s Disease 9 June 2015, 10am – 4pm, Hamilton Rugby Club. To reserve your place contact the Lanarkshire HD Service on 01355 576546 or email Marta Agnew.

End of Life Care

An afternoon palliative care educational session for healthcare professionals working in primary care and the community, including: What’s new in palliative care; End of life care record; Palliative care guidelines and symptom control at end of life; What matters to me? Motherwell: Wed 10th June; St Andrews Hospice: Thurs 17th September; Popinjay Hotel, Rosebank, Wed 11th November. For more information, email Fiona Young.

Paediatric Palliative Care for today and tomorrow…

11 June 2015, The Suttie Centre, University of Aberdeen. More information is available here: weblink.

Let’s Talk

15 June 2015, Edinburgh University Chaplaincy Centre.

A workshop in a civic café format to allow participants to address questions and issues in relation to end of life. The event is aimed at those having a pastoral care role in faith communities and health and social care staff. More information is available from Faith in Older People and you can book a place at the event here:weblink.

Developing Effective Cancer Survivorship Services

15 June 2015, London. More information is available here: weblink.

Global perspectives for palliative care; integration and health systems strengthening

19 June 2015, Edinburgh. Register on Eventbrite for this free event or email Mary Robertson.

Working with Teenagers/Young Adults with Cancer

A one day Learning Event. 30 June 2015, Edinburgh. More information is available here: weblink.

End of Life Care Continuing Professional Development Programme

Classification: Master level (level 11); Course Duration: 15 week module; Course Start Date: September; Course Mode: Fully Online; Subject Area: Palliative and End of Life Care.

You can study this module as stand-alone or use the credits gained from successful completion towards a Postgraduate Diploma or MSc Nursing. This module is a collaborative module, content is delivered by staff from St Margaret of Scotland Hospice, Clydebank. Further information available from Jacquie Lindsay on 0141 435 7017 or Dr Roseanne Cetnarskyj on 0141 331 8995.

New Directions in Palliative Medicine 5th Annual Conference

Beyond the Diagnosis. 8 and 9 October 2015. Inchyra Grange Hotel, Grangemouth. More information is available here: weblink

Hospice UK Annual conference: The art and science of hospice care.

10-12 November 2015, Liverpool. More information is available here: weblink

Rediscovering Holism: the future for Palliative Care

The 11th Palliative Care Congress, 9 - 11 March 2016, Glasgow. More information is available here: weblink

Back to top

And Finally...

In each issue of Update we try to end with something a little bit thought provoking or different. Matthew O’Reilly is a veteran emergency medical technician in Suffolk County on Long Island, New York. In this talk, he describes what it’s like to be asked by a patient “Am I dying?” and to answer honestly.

Back to top