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

Adults with Incapacity (Scotland) Act 2000 Proposals for Reform

The Scottish Government is seeking views on proposals to reform the law that makes provision for the personal welfare, property and financial affairs of adults who are unable to make decisions on these matters for themselves by reason of incapacity. The deadline for responses is 30 April 2018.

Safe and Effective Staffing in Health and Social Care
The Scottish Government has published a summary and independent analysis of responses to its consultation on safe and effective staffing in health and social care.

Draft strategy on loneliness and social isolation

The Scottish Government is consulting on a draft strategy on loneliness and social isolation. The closing date for submissions is 27 April 2018.

Organ and Tissue Donation
The Scottish Government has published an updated agreement between the Crown Office and Procurator Fiscal Service and the Scottish Donation and Transplant Group regarding procedures to be followed in relation to potential organ and tissue donors.

Mortuary Review
The Scottish Government has published the recommendations of the Mortuary Review Group.

Technology and Innovation in Health and Social Care

The Scottish Parliament Health and Sport Committee have published a report on Technology and Innovation in Health and Social Care.

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Practice

New videos on palliative care

The Primary Palliative Care Research Group at the University of Edinburgh have produced a series of videos for people living with declining health and the friends, family members and professionals caring for them:

What Now?

Published by Compassion in Dying, What now? is designed to help people find the information they need and ask questions, so that they can make informed decisions about their treatment and care. What now? is designed to be a helpful resource for health and care professionals working in a range of settings, as well as people living with terminal or life-changing illness and their families.

End of Life webinar series

The national End of Life Care (England) programme team runs a series of End of Life webinars. Each webinar explores a different topic, hosted by experts in that particular field. There is an opportunity to ask questions at the end of each webinar. The webinars are aimed at anyone working in palliative and end of life care.

Communication in palliative care reading list

Oxford University Press have published a reading list promoting the importance of communication in effective palliative care, and to encourage an open dialogue on the subject of death and dying

Sharing current Scottish practice

Call for posters and speakers

Are you involved in an interesting project that promotes open attitudes or planning ahead or community involvement in death, dying and bereavement?

Would you like the opportunity to share your work with other like-minded people in Scotland?

Why not apply for an open mic slot or poster display at the upcoming Everyday Compassion Conference in Glasgow?

  • To apply for a 5 minute presentation slot during the open-mic quick-fire session, please email Susan by 9 March 2018, with your name, role, organisation and 3-5 bullet points summarising the proposed content of your presentation.
  • To apply to display a poster of your work at the conference, please download the poster submission form and email it Susan by 9 March 2018.

For more details check out the conference website: Everyday Compassion Conference

Living to the End Report

Strathcarron Hospice have published Living right up to the end, a report of their work to develop an understanding of the support people living with long term conditions and their carers want when facing the challenge of deteriorating health. It also explores some of the barriers associated with talking about palliative and end of life care and death and dying.

Posters from SPPC Annual Conference 2017

The poster displays from the Scottish Partnership for Palliative Care Annual Conference 2017 are now available to view on the SPPC website.

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Academic and Research

Palliative and end-of-life care research in Scotland 20062015: a systematic scoping review

Anne M. Finucane, Emma Carduff, Jean Lugton, Stephen Fenning, Bridget Johnston, Marie Fallon, David Clark, Juliet A. Spiller and Scott A. Murray

Finucane et al. BMC Palliative Care (2018) 17:19 DOI 10.1186/s12904-017-0266-0

Report on the Incidence and prevalence of Parkinson’s Disease

Parkinson’s UK has published a report, infographic and briefing exploring the impact of Parkinson's on individuals, families and NHS and social care services in Scotland.

Palliative and end of life care for people with alcohol related brain damage

IRISS has published an evidence summary exploring what is considered good practice in providing end of life and palliative care for people with alcohol related brain damage.

PhD opportunity: Death and Dying in Prison

Strathclyde University is advertising an opportunity to do a fully funded PhD on Death and Dying in Prison: Deconstructing Disenfranchised Dying.

Discover Society: Focus on Death and Dying

The latest issue of Discover Society focuses on Death and Dying, featuring reflections on this subject from various perspectives. The contributions are from members of the interdisciplinary End of Life Studies Group at the University of Glasgow, together with some of the group’s collaborators from around the world.

Future Healthcare Journal: Focus on End of Life Care

The February edition of the Future Healthcare Journal includes a range of articles exploring issues relating to end of life care.

EAPC 16th World Congress, Berlin 2019 – call for proposals

The 16th World Congress of the European Association for Palliative Care – ‘Global Palliative Care – Shaping the Future’ – takes place from 23-25 May 2019 in Berlin, Germany. The Scientific Committee is seeking proposals for Parallel and ‘Meet the expert’ sessions from individuals, EAPC Taskforces, European Research Projects and other groups for the congress programme.

February update from Public Health England

The End of Life Care Profiles data update for February 2018 has been published by Public Health England.

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Good Death Week

Good Death Week will take place across Scotland from 14-20 May 2018. It is an opportunity for individuals and organisations to promote the positives of living in a society where people can be open about dying, death and bereavement.

It is the new name for the annual Scottish Death Awareness Week, which in previous years has seen all kinds of events including death cafes, conferences, art exhibitions, information sessions, film screenings, craft workshops and Before I Die walls.

Organisations and individuals across Scotland are invited hold events to mark the occasion, as well as making a noise over social media. Anyone can get involved by organising an event, no matter how big or how small. If you'd like to chat through your ideas, please get in touch, and if you are planning to take part please let us know so we can help promote your event.

For those looking for inspiration, the theme this year will be 'What does a good death mean to you?', and resources are available on the website: Good Death Week: Resources. Watch this space for further information.

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Scottish Partnership for Palliative Care News

Everyday Compassion: Supportive responses to dying and bereavement by schools, neighbourhoods and workplaces.

Wednesday 25th April 2018, Renfield St Stephen Centre, Glasgow.

Tickets: £20. View the full programme here: Everyday Compassion Conference Programme

The conference will bring together experts from across Scotland, the UK and beyond, to explore practical ways of encouraging a more open, supportive and compassionate Scotland in relation to death, dying and bereavement.

Plenary speakers include Kerrie Noonan, Director of Australia's GroundSwell Project, Professor Allan Kellehear of the University of Bradford, and Dr Libby Sallnow of University College London Hospital.

The day will include a focus on death education and bereavement support in schools, with contributions from Helen Quinn, of St Francis Xavier’s Primary School in Falkirk, Sally Paul of Strathclyde University, and Stephen Fischbacher of Fischy Music.

Themes covered throughout plenary and breakout sessions will include:

  • Compassionate Communities
  • Death Education and Bereavement Support in Schools
  • Socio-economically Disadvantaged Communities
  • the role of Faith Communities
  • Media Campaigns
  • Compassionate Workplaces
  • Community Development
  • To Absent Friends Festival

The event takes place on Wednesday 25th April 2018 at Renfield St Stephen Centre, Glasgow. Tickets, priced at £20, are available via Eventbrite.

Scottish Partnership for Palliative Care Annual Conference

This year's Scottish Partnership for Palliative Care Annual Conference will take place on Wednesday 28 November 2018 at the Royal College of Physicians of Edinburgh. More details will follow. Posters and presentations from last year’s conference are now available on the SPPC website.

Brexit

The SPPC has received a letter from Jackie Doyle Price MP, in response to its letter to David Davis MP on the subject of Brexit.

The Reluctant Planner’s Guide to Death and Dying

We have reached part three of our blog series - The Reluctant Planner's Guide To Death and Dying - in which our Development Manager, Robert Peacock, gets his affairs in order for if and when something happens to him. In his latest post, Robert speaks to Dr Juliet Spiller of Marie Curie Hospice Edinburgh about his Advance Directive. What is it? Why does he need one? What should he put in it?

Scottish Partnership for Palliative Care AGM

Wednesday 14 March 2018. Teacher Building, St Enoch Square, Glasgow from 6pm until 8pm

The AGM will include an update on the work of SPPC, a vote (by Nominated Representatives) on proposed changes to the membership and governance of SPPC, and a short presentation on a topic of interest. Email Susan for more details.

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Other News

You Matter

Marie Curie has published You Matter, a leaflet designed to encourage people to think about the care they would want at the end of their life.

Hospice Care in Scotland

Hospice UK have published Hospice Care in Scotland 2017, exploring the current and potential future contributions of hospices in Scotland.

Compassionate Communities UK

Compassionate Communities UK has been established by Allan Kellehear, Julian Abel, and Catherine Millington. The charity has been set up to implement the Compassionate City programme, as well as provide practice expertise in the public health approach to end of life care and embed it in health and social care education programmes. They also aim provide scientific evidence of effectiveness and a source of evaluation expertise.

Hospice UK briefing
Hospice UK have published Meeting local and national priorities for adults and children with terminal and life-shortening conditions in Scotland, a briefing designed to support ongoing development of local Strategic Commissioning Plans, and local teams in meeting palliative and end of life care needs in their communities.

BMJ poll on doctor assisted dying

The BMJ are currently running an online poll asking the question: “Should doctor assisted dying be legal?”

In the media

The ALLIANCE: Charities propose terminal illness social security change

BBC News: Police in Edinburgh investigate Maid Marian actor's death

The Courier: Angus relief as future of Strathmore hospice confirmed by health chiefs

Daily Record: East Kilbride Hospice granted Christmas wish after go-ahead for inpatient care

The Independent: We must ensure end-of-life care is available to all

Mail Online: Police launch probe into death of Blackadder and Maid Marian star, 76, whose family claim he was killed by an NHS drugs overdose

The Scotsman: Number of Scots living with Parkinson’s set to double

The Scotsman: Pamela Kirkpatrick: COPD sufferers need support to help them stay in work for longer

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And Finally...

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

The nurse who found herself in 1916

A palliative care nurse falls asleep on a train – not a remarkable event you may think. But, Charlotte Robertson boarded the train in the year 2001 and it appears to be September 1916 when she wakes up.

She is lost, scared and uncertain what to do and how to return home. Everything around her is different: the train, her location, other passengers, her clothes, luggage and bag. She has papers instructing her to report for duty at a Casualty Clearing Station in northern France. She adapts her modern nursing skills with difficulty and encounters badly injured soldiers, both strict and supportive colleagues, scared civilians and volunteers, life, love, hope and death in this foreign, military environment. She has to work out what is going on, whether she is dreaming and how she will get home.

About the author

Dr Sally Lawton was a nurse educator for thirty years who has an ongoing interest in nursing in World War 1. She was reading a case study about a soldier with a self-inflicted injury in a 1915 diary and wondered what she would have done in the same situation. The idea for her book was born! It has been written using extensive primary sources and her own nursing experience.

The Nurse who found herself in 1916 is published on Amazon for kindle or paperback.

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Courses and Events

We try to provide a fairly comprehensive list of palliative care events taking place in Scotland with the aim of publicising events and aiding event-planners to avoid diary clashes. If you are running an event that you'd like to publicise in the bulletin, please get in touch.

Help us help you: charities, HSCPs and joint working for better care

Organised by Marie Curie, CHAS and Sue Ryder, 22 February 11.30am-12.30pm, SEC Glasgow (Lomond Suite) (at The Gathering). More information is available here: weblink.

Improving Co-ordination, Improving Lives

Organised by HIS iHub. 22 February 2018, Edinburgh. More information is available here: weblink.

Empathy "Walk a mile in my shoes and feel what I feel… Developing and replenishing empathy

St Margaret of Scotland Hospice Lunch & Learn Session, 23 February. For more information email Margaret Donnelly.

Non-Medical Prescribing for Pain

Organised by Health Care Conferences UK. 2 March 2018, London. More information is available here: weblink.

Bereavement Research into Practice – Carers and Bereavement

Organised by the National Bereavement Alliance. 12 March 2018, London. More information is available here: weblink.

The APM’s Annual Supportive & Palliative Care Conference: Towards evidence based compassionate care

In Association with the Palliative Care Congress. Hosted by the APM and PCRS. 15-16 March 2018, Bournemouth. More information is available here: weblink.

Richard Holloway, Waiting for the Last Bus

Part of the Aye Write Festival, 17 March 2018, Glasgow. More information is available here: weblink.

With the End in Mind, Kathryn Mannix.

Part of the Aye Write Festival, 18 March 2018, Glasgow. More information is available here: weblink.

Symptom Assessment & Management Course

Organised by St Margaret of Scotland Hospice. 6 part course beginning on 5 April 2018. More information is available here: weblink.

Supporting parents through pregnancy loss and the death of a baby

Organised by Child Bereavement UK. 18 April 2017, Aberdeen. More information is available here: weblink.

Person Centred Culture – Removing the blinkers

Organised by Marie Curie. 24 April 2018, Edinburgh. More information is available here: weblink.

Everyday Compassion: Supportive responses to dying and bereavement by schools, neighbourhoods and workplaces

Organised by the Scottish Partnership for Palliative Care and Good Life, Good Death, Good Grief. A conference exploring how to encourage open and supportive attitudes and behaviours relating to death, dying and bereavement in Scotland. Wednesday 25th April 2018, Renfield St Stephen Centre, Glasgow. Tickets: £20. More information is available here: weblink.

Good Death Week

Good Death Week will take place across Scotland from 14-20 May 2018. It is an opportunity for individuals and organisations to promote the positives of living in a society where people can be open about dying, death and bereavement. More information is available here: Good Death Week

ACA Annual Conference and Exhibition 2018

Organised by the Association for Continence Advice (ACA) 21 & 22 May 2018, Bournemouth. More information is available here: weblink.

Paediatric Continence Workshop

Organised by the Association for Continence Advice (ACA). 21 May 2018, Bournemouth. More information is available here: weblink.

Care Home Continence Workshop

Organised by the Association for Continence Advice (ACA) 22 May 2018, Bournemouth. More information is available here: weblink.

Challenge or Conform: Finding Consensus in an Evolving Specialty

Organised by Strathcarron Hospice. 27 and 28 September 2018, Edinburgh. More information is available here: weblink.

SPPC Annual Conference 2018

The Scottish Partnership for Palliative Care Annual Conference will take place on Wednesday 28 November 2018 at the Royal College of Physicians of Edinburgh.

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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