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

Strategic Framework for Action

The Scottish Government has produced an engagement document to support the development of a Strategic Framework Action for Palliative and End of Life Care. The Scottish Government has invited comments and contributions on the engagement paper, and on the development process in general, by Monday 31 August 2015.

Health & Sport Committee Inquiry into palliative care

The Scottish Parliament Health & Sport Committee have announced that they will be undertaking an inquiry into palliative care. They have issued a call for written views which will run from 2 July to 12 August 2015.

Prior to this announcement, at its meeting on 2 June, the Committee took evidence from Rami Okasha, Director of Strategic Development, and Elaine MacLean, Professional Adviser, Palliative Care, Care Inspectorate; Jacqui Macrae, Head of Quality of Care, Healthcare Improvement Scotland; Niki Maclean, Director, Scottish Public Services Ombudsman. The Ombudsman’s submission to the committee is available here: weblink.

Palliative care was also an agenda item at the Committee's 28th April meeting, where it took evidence 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.

Out of Hours Service Review

The Scottish Government have announced that a programme of national engagement events will take place across Scotland over the summer, to inform the review of out-of-hours services.

NHS Boards Budget Scrutiny

This year, the Scottish Parliament’s annual scrutiny of NHS Boards’ Budgetsincluded a particular focus on palliative and end of life care.

Consultation: Complex Nutritional Care draft standards

Healthcare Improvement Scotland are currently consulting on draft standards relating to complex nutritional care. The deadline for comments is Wednesday 26 August 2015.

Hospital Based Complex Clinical Care

The Scottish Government has issued a letter providing guidance on Hospital Based Complex Clinical Care which replaces guidance on NHS Continuing Healthcare contained in CEL 6 (2008).

Reshaping Care for Older People

The Joint Improvement Team has published a report describing the progress made over the first four years of the ten year Reshaping Care for Older People programme.

Guidance on the recovery of expenditure on accommodation and services

The Scottish Government has published guidance intended to assist local authorities in applying the statutory provisions under which the local authority providing accommodation and/or services can recover the costs from another local authority in Scotland.

Consultation on lobbying bill

The Scottish Government is currently consulting on proposals to introduce a register of lobbyists who directly engage with Members of the Scottish Parliament and Scottish Ministers. The deadline for written responses to the consultation paper is 24 July 2015.

Third Sector Interface Organisations

The Scottish Government has published an Advice Note setting out the role of the Third Sector Interface organisations in relation to integration activities.

Call for action on building a more sustainable NHS in Scotland

All the Royal Colleges in Scotland have jointly published a statement setting out their collective belief that change is needed now if the NHS in Scotland is to be sustainable into the future:

3-year strategy for NCPC (England)

The National Council for Palliative Care (NCPC) has published its official strategy for 2015-18. In the three years to March 2018 The Road Ahead will shape all NCPC's activities, including their work leading the Dying Matters Coalition.

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Practice

Care of Older People in Hospital Standards

Healthcare Improvement Scotland has published Care of older people in hospital standards designed to support acute episodes of care of older people in hospital.

RCN end of life care guidance

The RCN has published Getting it right every time; fundamentals of nursing care at the end of life. The guidance is designed for all nursing staff including healthcare assistants in all settings caring for people in the last year of life and those who are important to them. It highlights what is important when caring for a person approaching the end of their life.

Training pack: improving end of life care through better integration

Skills for Health has produced Working together: Improving end of life care through better integration, a training pack designed to increase awareness and understanding of the importance of working together to support people at the end of their lives.

New Macmillan toolkit on Advance Care Planning

A new resource designed to help healthcare professionals discuss future care plans with patients, has been released by Macmillan Cancer Support. The toolkit is aimed at generalists caring for people with progressive illnesses and those reaching the end stage of their lives. It covers a range of topics, and includes video clips and web links to assist professionals with their learning.

Guidelines to support people bereaved by alcohol or drugs

The University of Stirling and the University of Bath have launched a set of practice guidelines aimed at providing meaningful support to people who have lost a relative or friend to alcohol or drugs.

Powers of Attorney - New Guide for Health and Social Care Staff

The Mental Welfare Commission have published a new guide for health and social care staff about common concerns they may face in relation to powers of attorney.

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Sharing current Scottish practice

Dundee students explore new ways of learning

In this blog, Lynn Griffin, Lecturer Dundee University School of Nursing and Midwifery, discusses how students participated in death cafes and Before I Die walls alongside their theoretical palliative care lectures, as part of Dying Matters Awareness week last May.

NHS Tayside findings from Power of Attorney campaign

In this blog, Helen Dryden and Sally Wilson share the initial results from the recent Tayside Power of Attorney Campaign.

Poster abstracts of the month

This month the SPPC Sharing Scottish Practice blog features seven 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.

Study of volunteering in NHS Scotland

The Scottish Health Council and Healthcare Improvement Scotland have published Volunteering in NHSScotland, an evaluation of progress with the Volunteering Programme for NHSScotland.

Report: A profile of the care at home sector in Scotland 2015

Scottish Care have published Home Delivery, a profile of the care at home sector in Scotland in 2015. The report aims to provide a profile of the care at home sector in Scotland, focusing on provision for the over 65s. In particular, the research aimed to map the size and scope of the care at home sector and to consider the opportunities and challenges facing the sector.

The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993–2012

Katherine E Sleeman, Joanna M Davies, Julia Verne, Wei Gao, Irene J Higginson Palliative Medicine May 19, 2015 doi:10.1177/0269216315585064

Publication of Minimum Dataset data (England, Northern Ireland & Wales)

Hospice UK, Public Health England and the National Council for Palliative Care have published the annual National Survey of Patient Activity Data for Specialist Palliative Care for 2013-2014. The report indicates that increasing numbers of people are accessing specialist palliative care across all settings – especially community-based services

What we know now 2014

Public Health England’s national end of life care intelligence network has published What We Know Now 2014, a report summarising the key findings of the network and its partners over the last year.

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Public/Patient Experience

‘You only have one chance to get it right’: A qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer

Jonathan Totman, Nancy Pistrang, Susan Smith, Susan Hennessey and Jonathan Martin. Palliative Medicine 2015, Vol. 29(6) 496–507 DOI: 10.1177/0269216314566840

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Web News

Smart grief guide

The Smart Grief Guide has been developed by a group of secondary school students, to help young people find a way through their feelings when someone important to them has died.

Care Information Scotland website

The Care Information Scotland website is designed to provide access to quality assured information on care and social care services in Scotland. Managed by NHS 24, the service has recently expanded to provide a central and first point of access to a wealth of care information in Scotland. The service has been designed as a central point to help guide people through the maze of resources to ensure they have access to comprehensive, accurate and up to date information, either for themselves, a relative or a friend.The service is also a source of information for care professionals.

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Scottish Partnership for Palliative Care News

Death on the Fringe

After its success last year, we're pleased to be bringing Death on the Fringe back to the Edinburgh Festival fringe again this August. Death on the Fringe is a series of shows that look at death and dying from different perspectives – some serious, some comical – but all contributing to the debate on death and end of life matters.

Thirteen diverse shows are lined up to be part of this year’s Death on the Fringe, and this year we're excited to be expanding the festival with a Lecture Series and a Cabaret Evening. The Death on the Fringe Lectures bring four medical, academic and end-of-life care professionals to Edinburgh to discuss the latest thinking on the topic, stimulating discussion and challenging established ideas. The Death on the Fringe Cabaret, will be an evening of poetry, music and performance reflecting upon life, death and grief, featuring established local performers.

SPPC response to Health Committee Inquiry into Palliative Care

The Scottish Parliament Health and Sport Committee’s has announced a call for evidence to inform its inquiry into palliative care. We have emailed member representatives for comments, and these will inform our written evidence, and also any oral evidence given by the Partnership.

ALLIANCE Round Table on Palliative Care

To coincide with the Scottish Parliament’s Health and Sport Committee call for evidence on palliative care, we are jointly hosting a round table session on palliative care with the Health and Social Care ALLIANCE Scotland . This round table session will give ALLIANCE members the opportunity to discuss key issues related to palliative care and inform responses to the Committee’s inquiry. The session will take place on Wednesday 5 August from 10.30am -12:30pm at the ALLIANCE offices in Glasgow. To register, please email or telephone: 0141 404 0231. More information is available here: weblink.

Could you host the Essence of a Memory exhibition?

Essence of a Memory: an exhibition in words and pictures is a thought-provoking series of images and prose capturing stories of dead loved ones. The exhibition is a collection of the winning entries from the Essence of a Memory competition that we ran last year. To raise awareness of the upcoming To Absent Friends festival we are planning a Scotland-wide tour of the exhibition. We'd love to see the photos displayed in a huge variety of venues across Scotland, including hospices, hospitals, universities, waiting rooms, town halls, libraries, theatre foyers, and office buildings. The exhibition is portable and suitable for display in a variety of venues. If you think you could provide or help organise a venue for hosting the exhibition for a short time, 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.

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Other News

Before you go

Age UK has published Before you go, a guide to support people to plan for the end of life.

Marie Curie report: Triggers for Palliative Care

Marie Curie has published a new report, Triggers for palliative care, which explores the evidence around access to palliative care for people with a range of non-cancer diagnoses. It also uses existing evidence to identify factors which trigger palliative care referrals for people with these conditions. A paper focusing on the Scottish implications of this report is also available.

Discontinuation of Co-danthramer capsules (25/200 and 37.5/500)

UKMi have asked us to publicise the above discontinuation notice. Further information about this is available here: weblink.

Funeral Poverty

Quaker Social Action on Poverty is leading a Fair Funerals campaign to:

  • Educate people about their choices so they can avoid funeral poverty
  • Influence government to do more for people in funeral poverty
  • Work with the funeral industry to do more for people on low incomes

They recently launched the Fair Funerals Pledge, encouraging individuals and groups who care about funeral poverty issues to ask their local funeral directors to provide clear prices and a more affordable funeral package for people who are struggling.

A new report by Citizen's Advice Scotland, the Cost of Saying Goodbye, details the rising cost of burials and cremations in all of Scotland’s 32 Local Authorities. It shows that costs vary by over £2,000 between the most expensive and least expensive Councils in Scotland.

John Wilson MSP has asked three parliamentary questions relating to funeral poverty (S4W-26020) (S4W-26021) (S4W-26043).

Our Voice

Our Voice is an initiative to support all those who use or experience health and social care services to engage purposefully with providers to inform and drive continuous improvement. It’s been developed in partnership between the Scottish Government, COSLA, Healthcare Improvement Scotland, the Scottish Health Council and the Health and Social Care ALLIANCE. It will build on many existing forms of engagement, supporting them to focus more strongly on continuous improvement, but will also include:

  • a new “citizen voice hub” connecting local and national networks and creating space for people’s views and learning to be shared;
  • new peer networks supporting people to participate in local health and social care planning;
  • new “citizens’ panels” involving the public in national policy.

Training needs analysis - paediatric psychology

NHS Education for Scotland Paediatric Psychology develop and deliver training in specific psychological skills to nurses, doctors and other healthcare staff who work with children and young people with physical health difficulties. They are currently updating and expanding existing training modules and are seeking views to help shape the training they develop over the next few years.

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: MSPs launch inquiry into 'end of life' care

The Courier: ‘Don’t bump me off’ — Confused OAP ‘bullied’ into non-resuscitation request, family claim

Evening Times: MSPs call for more end of life care

Evening Times: MSPs bid to improve palliative care

RCN: Terminally ill children let down by poor end of life care

The Scotsman: Shona Robison: Quality care should be given to all

The Scotsman: NHS promises to listen to elderly patient wishes

The Scotsman: Letter from Richard Meade

The Scotsman: People mourning drink and drug deaths lack support

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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.

Strategic Framework for Action engagement events

The final Scottish Government engagement event to discuss the development of a Palliative and End of Life Care Strategic Framework for Action will take place on 14th July, at the Sir Duncan Rice Library (Aberdeen University), Aberdeen.

ALLIANCE Round Table on palliative care

To coincide with the Scottish Parliament’s Health and Sport Committee call for evidence on palliative care, the Scottish Partnership for Palliative Care and the Health and Social Care ALLIANCE Scotland, are jointly hosting a round table session on palliative care. This round table session will give ALLIANCE members the opportunity to discuss key issues related to palliative care and inform responses to the Committee’s inquiry. The session will take place on Wednesday 5 August from 10.30am -12:30pm at the ALLIANCE offices in Glasgow. To register, please contact event@alliance-scotland.org.uk or telephone: 0141 404 0231. More information is available here: weblink.

A Better Place to Die: Africa or Scotland?

Death on the Fringe lecture by Professor Scott Murray. 10 August, St. John’s Church Hall, Princes Street, Edinburgh at 4pm, followed by a Death Cafe until 5.30pm.

Dying to tell

Death on the Fringe lecture by Jo Hockley. 17 August, St. John’s Church Hall, Princes Street at 4pm, followed by a Death Cafe until 5.30pm.

Living with Dying: Uncertainty and Hope

Death on the Fringe lecture by Dr Jeremy Keen. 24 August, St. John’s Church Hall, Princes Street, Edinburgh at 4pm, followed by a Death Cafe until 5.30pm.

Death: The Upside

Death on the Fringe lecture by Dr Richard Smith. 31 August, St. John’s Church Hall, Princes Street, Edinburgh at 4pm, followed by a Death Cafe until 5.30pm.

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

Let’s talk about end of life care

End of Life Care workshop, RCN and National Council for Palliative Care, 1 September 2015, RCN Headquarters, Edinburgh. More details are available here: weblink.

The outside world and wellbeing

29 September 2015, Scottish Storytelling Centre, Edinburgh. Speaker: Professor Mary Marshall. The book Creating culturally appropriate outside spaces and experiences for people with dementia forms the basis of this seminar, which will challenge us to consider our relationship with nature. 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 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.

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

Scottish Cancer Conference 2015

16 November 2015, Edinburgh. 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 issue of Update we try to end with something a little bit thought provoking or different. This month we look at the fantastic line-up of lectures planned for next month’s Death on the Fringe in Edinburgh...

The Death on the Fringe Lectures bring four medical, academic and end-of-life care professionals to Edinburgh to discuss the latest thinking on the topic, stimulating discussion and challenging established ideas. Each lecture will take place at St. John’s Church Hall, Princes Street at 4pm, followed by a Death Cafe until 5.30pm.


Mon 10 AugProfessor Scott Murray – A Better Place to Die: Africa or Scotland?

Professor Scott A. Murray is a GP and also St Columba’s Hospice Chair of Primary Palliative Care at Edinburgh University. He used to work in rural Kenya and has published research in the British Medical Journal comparing how people die in Kenya and Scotland. He will talk about the many contrasts between the two, and how each country can learn from each other to help people live and die well. Africa can teach us many positives in dying!


Mon 17 AugJo Hockley – Dying To Tell

Jo Hockley is a nurse specialist who has spent the major part of her career caring for people who are dying, and undertaking research. She worked with Dame Cicely Saunders, founder of the hospice movement, and now works at the University of Edinburgh. Many people in the last days of life know very well they are dying – it is their body not ours; yet, we so often collude otherwise. Jo will be sharing stories and literature that bring the whole subject of death and dying alive.


Mon 24 Aug Dr Jeremy Keen – Living with Dying: Uncertainty and Hope

Dr Jeremy Keen is a Consultant Physician in Highland Hospice, Inverness. He has worked in Palliative Care for the last twenty years, in Edinburgh, Canada and latterly in the Highlands. Whilst principally a front line clinician, his areas of particular interest include the interrelated concepts of dignity, personhood and quality of life. Jeremy will be talking about the centrality of hope in enabling living with a life-shortening illness (drawing on the experience of working as a Hospice Doctor for the last 20 years).


Mon 31 Aug Dr Richard Smith – Death: The Upside

Without death every birth would be a tragedy. Sadly we are almost at that stage. We need to learn to see the many positive aspects to death, but the evidence shows both that our society denies death and that the denial causes pain and suffering. Death denial also diminishes living and causes problems beyond healthcare. Unfortunately doctors may be more part of the problem than the solution. Former BMJ editor Richard Smith will discuss the growing movement to rediscover the positive aspects of death.

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