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

Palliative Care was an agenda item at the 28th April meeting of the Scottish Parliament Health and Sport Committee. The committee 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. The Official Report of this meeting is due for publication by 6 pm on Friday 1 May 2015.

Strategic Framework for Action engagement events

The Scottish Government has announced a series of 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

Report on Assisted Suicide (Scotland) Bill

The Scottish Parliament Health and Sport Committee has published its Stage 1 report on the Assisted Suicide (Scotland) Bill.

New Chief Pharmaceutical Officer

Professor Rose Marie Parr has been appointed as the Scottish Government`s Chief Pharmaceutical Officer.

Medical and Surgical Clinical Outcome Review Programme

From 1 April 2015, Scotland will join the Medical and Surgical Clinical Outcome Review Programme. The Programme aims to assist in maintaining and improving standards of medical and surgical care by reviewing the management of patients, through the use of national, topic-based, anonymised case note review and assessment of Trust or NHS Board organisational data.

National Care Standards Review: Consultation Analysis

The Scottish Government has published an analysis of responses to their recent consultation on proposals to update the National Care Standards.

Health Committee publishes report calling for better end of life care (England)

The House of Commons Health Select Committee has published a report recommending several improvements to end of life care, following an Inquiry launched in November 2014.

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Practice

Advance care planning

Macmillan Cancer Support have produced a toolkit exploring when and how to start conversations; and how you can help someone discuss what's important to them and help them plan ahead for their future care. The toolkit is aimed at generalists caring for people with progressive illnesses and those reaching the end stage of their lives.

Decisions to limit treatment for children with life-threatening conditions

The UK Royal College of Paediatrics and Child Health has published Making Decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. This supersedes the 2004 publication Witholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice.

Sharing current Scottish practice

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

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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 Abstracts: New Directions in Palliative Medicine

Stratchcarron Hospice has announced the call for abstracts for their fifth annual conference, which will take place 8th and 9th October 2015, Inchyra Grange Hotel, Grangemouth. They welcome abstracts relating to any aspect of Palliative Care from a wide range of professionals. They are interested to hear about research or audits - using quantitative and/or qualitative methods - relevant to Palliative Care. Closing date for abstracts is 29th May 2015.

Research into artificial hydration

Medical students at the University of Leeds are conducting research into artificial hydration in palliative care and are seeking to collect information about the thoughts and experiences of health and social care professionals regarding artificial hydration through an online survey.

Equity in the Provision of Palliative Care in the UK: Review of Evidence

A team from the Personal Social Services Research Unit (PSSRU) at the London School of Economics and Political Science (LSE) was commissioned by Marie Curie to explore the evidence on equity in palliative care and to consider the economic implications of extending palliative care to those currently under-served. They have published a report presenting the findings from a wide-ranging and comprehensive review of research literature and nationally available data, and new multivariate analyses of data from the National Survey of Bereaved People in England, 2013.

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

Carduff, A. Finucane, M. Kendall, A. Jarvis, N. Harrison, J. Greenacre, S. A. Murray BMC Fam. Pract. (2014) 15, 48
http://EuropePMC.org/articles/PMC3992158

Assessing the internal consistency and temporal stability of advance directives generated by an interactive, online computer program.

Schubart JR, Camacho F, Green MJ, Rush KA, Levi BHBMJ Support Palliat Care. 2015 Mar 5.

End of life journal

The St Christopher’s End of Life Journal has recently moved, and is now published and hosted online by BMJ.

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Public and Patient Experience

Palliative Stories

The European Association for Palliative Care website features a new series of blogs written from the perspective of patients and family carers.

Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews with Patients with Cancer, Organ Failure or Frailty and Their Family and Professional Carers.

Kendall M, Carduff E, Lloyd A, Kimbell B, Cavers D, Buckingham S, Boyd K, Grant L, Worth A, Pinnock H, Sheikh A, Murray SA. J Pain Symptom Manage. 2015 Mar 27. pii: S0885-3924(15)00153-0. doi: 10.1016/j.jpainsymman.2015.02.017.

Palliative care patients’ perceptions of the work involved in understanding and managing the network of care provision surrounding them.

Jarrett N, Porter K, David C, Lathlean J, Duke S, Corner J and Addington-Hall J. BMJ Support Palliat Care doi:10.1136/bmjspcare-2014-000781

The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting

Bridget Johnston, Jan Pringle, Marion Gaffney, Melanie Narayanasamy, Margaret McGuire and Deans Buchanan. BMC Palliative Care 2015, 14:9 doi:10.1186/s12904-015-0013-3

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Scottish Partnership for Palliative Care News

Vote for SPPC – Scottish Charity Awards

We are delighted to find out that the Scottish Partnership for Palliative Care is a finalist in the 2015 Scottish Charity Awards. To Absent Friends, a people's festival of storytelling and remembrance, has been shortlisted for the Cracking Campaign category. This is a great opportunity to raise the profile of our important work, so please show your support by voting for us for the People’s Choice Award here: Vote for SPPC

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.

SPPC response to Carers Bill consultation

The Scottish Partnership for Palliative Care has submitted a response to the Scottish Parliament Health & Sport Committee's request for views on the Carers (Scotland) Bill.

Burial & Cremation Bill

The Scottish Partnership for Palliative Care has submitted a response to the Scottish Government's proposed Bill relating to burial and cremation and other related matters in Scotland.

Briefing for MSPs on choice and control at the end of life

The high profile public debate about assisted suicide illustrates that many people feel strongly that it is important to retain some control of their own destiny if their health declines. The proposed Assisted Suicide (Scotland) Bill aims to introduce an additional choice, subject to conditions, for people with terminal, life-shortening conditions. Within this context it is relevant to consider the choices and mechanisms that currently exist to enable people to exercise some control if their health declines and as they approach the end of life. The SPPC has emailed MSPs a briefing paper to provide them with factual information about these existing choices and mechanisms

Dying Matters Awareness Week approaches

Dying Matters Awareness Week will take place from 18-24 May, encouraging people to take a few simple steps to make end of life experiences better, both for themselves and for their loved ones. Across Scotland people will be getting involved by putting on their own events. The theme of the Awareness Week is 'Talk, Plan, Live', using the hashtag #YODO, which stands for You Only Die Once. For more information about Dying Matters Week and how you might participate, check out the Dying Matters website. If you are planning to put on an event in Scotland, do get in touch and we can help to promote it through the Good Life, Good Death, Good Grief networks.

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Other News

New Marie Curie information and support services

Marie Curie have launched new information and support services. The services include:

  • The Marie Curie Support Line (0800 090 2309)– a confidential phone helpline for anyone who has questions about any aspect of terminal illness, needs support or just wants to talk.
  • An information hub on the website, with leaflets to download or request in print, film guides, and links to other support.
  • The Marie Curie Community – an online forum for anyone affected by terminal illness to share experiences and find and give support.

Marie Curie - Changing the Conversation

Marie Curie have published Changing the Conversation, a report aiming to set outs why there is a need need to act to support people living with a terminal illness to ensure that everyone is getting the care that they need. More information about Marie Curie’s Changing the Conversation campaign is available here: weblink.

Demos project on young people and complex needs

Demos is reviewing the current landscape of organisations supporting children with complex disabilities and palliative care needs and their families, in England, Wales, Scotland and Northern Ireland. They want to hear from young people with complex disabilities, life-limiting and life-threatening conditions, as well as their families and the practitioners that support them, with views on what support matters most; what is working well; what is working less well; and what improvements people would like to see.

David Praill retires

David Praill, Chief Executive of Hospice UK has announced he will retire in July this year.

Consumer experience at the end of life

Consumer organisation Which? has published a new report on the consumer experience at the end of life.

Numbers of children affected by a life-limiting condition

Fact sheet: Numbers of children & young people affected by a life-limiting or life-threatening condition has been developed by Together for Short Lives with Dr Lorna Fraser, Anniversary Research Lecturer at the University of York. It aims to provide a simple summary of the key research that has been published to date on the prevalence of life-limiting and life-threatening conditions.

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.

Daily Mail: Over 75? Sign here if you're ready for death: GPs to ask ALL older patients if they'll agree to a 'do not resuscitate' order

Edinburgh Evening News: New boss unveils vision for St Columba’s Hospice

eHospice news: ‘To Absent Friends’ campaign nominated for Scottish Charity Award

GMC blog: End of life care requires care, compassion and simple humanity.

The Scotsman: Beating the last great modern taboo

The Scotsman: Charities in end of life care plea

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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.

St Andrew's Hospice Monthly Lecture: What matters to you about the future of palliative care in Scotland?

Professor Craig White, Divisional Clinical Lead, Scottish Government. 6 May 2015, 12.30 pm Tom Cox Building. For more information or to book a place, contact Christine Reaoch: 01236 772017.

Association for Palliative Medicine Transition Special Interest Forum: Inaugural Meeting

6 May 2015, Birmingham. Register by contacting Laura Dowds.

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? Blantyre:Thurs 14th May; Motherwell: Wed 10th June; St Andrews Hospice: Thurs 17th September; Popinjay Hotel, Rosebank, Wed 11th November. For more information, email Fiona Young.

The 4th International Conference for Public Health Palliative Care: Community Resilience in Practice

11- 16 May 2015, Bristol. More information is available here: weblink

Looking Back, Looking Forward

14 May 2015, Edinburgh. Evaluation Support Scotland reflects on evaluation practice over the last ten years and looks at evaluation support in the future. More details are available here: weblink.

Death Cafe

Restaurant D'vinity, Ayr, on Monday 18th May 18th, starting at 7pm. More information is available here: weblink.

Improving End of Life Care

Wednesday 20 May 2015, Birmingham. More information is available here: weblink.

Changing Ways: Perspectives on Palliative Care for the Frail Elderly Conference

West Park Centre, Dundee. 22 May 2015. Email for further details.

Death Cafe

Gallery of Modern Art, Glasgow, on Saturday 23rd May starting at 1pm, hosted by Final Fling. More information is available here: weblink.

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.

Paediatric Palliative Care for today and tomorrow…

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

Developing Effective Cancer Survivorship Services

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

Working with Teenagers/Young Adults with Cancer

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

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

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And Finally...

...In each edition of UPDATE we try to end with something a little bit different or thought provoking...

In this short, provocative talk, architect Alison Killing looks at buildings where death and dying happen — cemeteries, hospitals, homes. She suggests that the way we die is changing, and that perhaps the way we build for dying should too.

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