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.

Practice

Survey seeks feedback on Scottish Palliative Care Guidelines

HIS are currently undertaking a survey, seeking feedback on people's experiences of using the Scottish Palliative Care Guidelines in practice within NHSScotland. They are requesting that people participate in the survey to share what works well, what needs rethinking and what is out of date. Responses will inform an update of the guidelines proposed for 2017. Take part in the survey

A Really Practical Handbook of Children’s Palliative Care

Newly published, A Really Practical Handbook of Children’s Palliative Care for Doctors and Nurses Anywhere in the World by Justin Amery is designed to offer practical solutions to common problems faced by health professionals caring for dying children and their families, whatever their culture or socioeconomic circumstance.

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Academic and Research

BMA report on end of life care and physician assisted dying

The BMA have published a third and final volume which marks the culmination of their project examining the public and medical professionals' attitudes relating to end-of-life care and physician-assisted dying. The report contains the BMA’s reflections and recommendations on all that has emerged from the research contained in volumes 1 and 2.

RCP End of Life Care Audit (England)

The Royal College of Physicians (RCP) has undertaken an end of life care audit in England, funded by NHS England and Marie Curie, and commissioned by the Healthcare Quality Improvement Partnership. The audit is the first to be carried out following the official withdrawal of the Liverpool Care Pathway (LCP) in 2014. Results indicate that there has been steady progress in the care of dying people in England since a previous audit carried out in 2013 and published in 2014.

Call for abstracts: Marie Curie Annual Palliative Care Research Conference

The Marie Curie Annual Palliative Care Research Conference will take place at the Royal Society of Medicine, London on Wednesday 19 October. Marie Curie are now inviting abstract submissions for short presentations and/or posters on research in palliative and end of life care. Whilst abstracts relevant to out of hours care are more likely to be chosen for oral presentation, submissions on any subject in palliative and end of life care are welcomed. Abstracts must be submitted online by 5pm on Friday 17 June.

End of life care still not living up to public and doctors’ expectations

An editorial, by Scott A Murray and Iain R Murray. BMJ 2016;353:i2188

End of Life at Home: Co-Creating an Ecology of Care

Debbie Horsfall, Ainsley Yardley, Rosemary Leonard, Kerrie Noonan and John P Rosenberg.

Undertaken in Australia, this study explored how ordinary people supported each other to care for someone dying at home, how their wider community supported the carer, what formal support was available to carers and how those formal and informal networks interacted with each other.

Appropriateness of unscheduled hospital admissions from care homes

Jennifer K Harrison, Iona K McKay, Patrick Grant, Jean Hannah and Terence Quinn. Clinical Medicine 2016 Vol 16, No 2: 103–8

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Public/Patient Experience

A survey of older peoples’ attitudes towards advance care planning

Age & Ageing, 2015;44(3):371-376. The aim of this study was to assess the attitudes of older people in East Midlands towards advance care planning, through the development and administration of a survey. 17% of the respondents had prepared an advance care planning (ACP) document, of whom 4% had completed an Advance Decision to Refuse Treatment. 5% of respondents stated they had been offered an opportunity to talk about ACP. Predictors of completing an ACP document included: 1) being offered the opportunity to discuss ACP; 2) older age; 3) better physical function; and, 4) male gender. Levels of trust were higher for families than for professionals. Preferences were for informal discussions with family rather than professionals.

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Web News

Improvement Hub goes live

The Improvement Hub (which previously had the working title of the Integrated Improvement Resource) is designed to integrate and build on the combined expertise, resources and best practice of Healthcare Improvement Scotland, the Quality and Efficiency Support Team and the Joint Improvement Team. More information about the programmes that sit under the Improvement Hub is available on the new Improvement Hub web resource.

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SPPC News

SPPC Annual Conference – Booking Open

Booking is now open for the SPPC Annual Conference, which will take place on 22 September 2016 at the Royal College of Surgeons of Edinburgh. Speakers confirmed so far include:

  • Professor Charles Normand, Edward Kennedy Professor of Health Policy and Management at the University of Dublin, Trinity College and visiting professor at the London School of Hygiene & Tropical Medicine. He will be speaking about health economic evaluation of palliative care and making the case for palliative care in times of austerity.
  • Professor Brendan McCormick, Head of the Division of Nursing/Head Graduate School and Associate Director Centre for Person-centred Practice Research at Queen Margaret University, who will be addressing issues of person-centred practice.
  • Dr Catherine Calderwood, Chief Medical Officer for Scotland.

SPPC Work Plan: 2016 – 2017

We are pleased to announce the publication of our work plan for the coming year. The work plan can be accessed on our website here: SPPC Work Plan 2016-2017.

Building on the Best

SPPC is part of a UK-wide project to improve palliative care in acute hospitals. The project is a partnership between SPPC, the National Council for Palliative Care (England), Macmillan (who are the funders) and the NHS. The project will support local improvements within 4 key themes (symptom control, shared decision making, outpatients, communication/handovers). For more information contact Mark Hazelwood.

Contribution to Openness about Death Award

We are pleased to announce the winners of a new award which recognises contributions towards promoting more open and supportive attitudes to death and bereavement in Scotland. The winners are Robert Peacock, volunteer Director of Death on the Fringe, and film-makers Jane Harris and Jimmy Edmonds. The award aims to give recognition some of the diverse work taking place across Scotland in this area, and a full list of finalists is available here: Contribution to Openness Award

To Absent Friends: Activity Report and Evaluation 2015

We have published a report reflecting on the success of last year's To Absent Friends festival. The report outlines the aims and rationale behind the festival, and gives an overview of festival activity. The report explores ways of evaluating the effectiveness of the festival, and reflects on learning gained. The full report can be accessed here: To Absent Friends: Activity Report and Evaluation 2015

SPPC Treasurer

Thanks to Mandy Yule, Chief Executive of Ayrshire Hospice, who is the Scottish Partnership for Palliative Care’s new Honorary Treasurer.

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Other News

Interested in affordable funerals? New network starting in Scotland
A new group is being set up in Scotland to encourage care at home after death, and thoughtful, affordable funerals. Called Pushing up the Daisies, the new group’s aims will be:

  • awareness raising and practical advice, which will include a helpline, and support with the practicalities of caring for a dead body at home
  • researching and providing local information on options, practicalities and costs of funerals so people can make affordable choices.

The vision is for a charitable/ voluntary network of local contacts across Scotland who can support each other and give practical advice to people in need of it. If you are interested or would like more information please contact Kate Clark.

Survey: palliative and end of life care within primary care

The RCGP and Marie Curie are undertaking a survey about Palliative and End of Life Care within primary care. This survey seeks to understand and address the challenges facing primary care professionals in palliative care.

Public Health Palliative Care International

Public Health Palliative Care International is a newly formed association, with the purpose of communicating at a global level the importance of public health ideas and approaches in palliative care. PHPCI will promote practice learning, professional support, and facilitate local and international communication between members around the world in their individual attempts at embedding a public health approach to the practice of palliative care. Membership of PHPCI is open. For more information and to join, visit the PHPCI website.

Social Aspects of Death, Dying and Bereavement

The International Work Group on Death, Dying and Bereavement (IWG) is a worldwide group of those in the forefront of bereavement research and practice in their own countries. The group meets every 18 months in a different part of the world, and later this year they will meet, for the first time, in Scotland, in what is being billed as a Celtic meeting, with input from Wales and Ireland as well as from Scotland. In connection with that meeting IWG invites you to share in a one day UK wide Conference entitled: Social Aspects of Death, Dying and Bereavement. This conference will be held in Glasgow on Saturday 5 November, and speakers include:

  • Professor Robert Neimeyer, University of Memphis
  • Dr Neil Thompson, Writer and Educator, Wales
  • Dr Darcy Harris, Western University, London, Ontario, Canada
  • Professor David Clark, Glasgow University
  • Professor Kenneth Doka, College of New Rochelle, New York State.

The conference will be chaired by Dame Barbara Monroe CBE, Special Commissioner of the Royal Hospital Chelsea and a Trustee of Marie Curie. There will also be interactive workshops which will consider subjects such as funerals, volunteering, young people’s services and memorialisation. Full details and registration are available here: weblink

National Care Standards Review: Update

The latest update bulletin on the progress towards the development of new National Care Standards has been published.

Clinical Pioneer Awards Scheme – Survey of Key Priorities

The Clinical Pioneer Awards Scheme is a funding opportunity for clinicians and non-clinicians (for example qualitative research academics or technology developers) who have innovative project ideas that are focused on interventions within the clinical or community setting to improve diagnosis, treatment and care, quality of life and experience for pancreatic cancer patients or carers. The scheme will be launched later on in the summer, and the organisers are currently seeking input on the development of a list of priorities to ensure that the research funded is of the highest relevance and importance for those affected by pancreatic cancer.

The Co-Care project: research into volunteer-led support for caregivers

Funded by the National Institute of Health Research (NIHR), researchers from the Faculty of Health Sciences, Southampton University are conducting a survey of how volunteers provide support for family caregivers at home. To take part in the survey and for more information please follow this link: weblink.

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: Around the clock care for dying 'not good enough'

The Herald: I became driven, passionate about the patients, the families and about making a difference. Ann Fotheringham is Face to Face with Rhona Baillie, CEO of the Prince and Princess of Wales Hospice.

Scotland on Sunday: Poignant portraits challenge attitudes to death

Scotsman: Better care for children with shorter lives is a good step

Scotsman: Terminally ill patients ‘denied consistent standards of care’

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And Finally...

...in each edition of Update we try to end with something a little bit thought-provoking or different. This month, Katy Shorttle explores frailty in this series of creative and poignant photographs.

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Courses and Events

Bookings open for SPPC Annual Conference 2016

Booking is now open for the SPPC Annual Conference, which will take place will take place on 22 September 2016 at the Royal College of Surgeons of Edinburgh.

Paediatric Continence Workshop

24 May 2016, Edinburgh. (Organised by the Association for Continence Advice.) More information is available here: weblink

Priorities for palliative and end of life care in Scotland

2 June 2016, Edinburgh. (Organised by Scotland Policy Conferences.) More information is available here: weblink.

Interventional Techniques for Cancer Pain

3 June 2016, Beatson West of Scotland Cancer Centre, Glasgow. (Organised by West of Scotland Interventional Cancer Pain Service, Association for Palliative Medicine, and the Beatson West of Scotland Cancer Centre.) For more information please contact Claire O’Neill on 0141 301 7041 or email.

Governance, Ethics and Challenges in Palliative Care Research

3 June 2016, Dundee (Organised by NHS Tayside and the University of Dundee.)

If you are interested in attending or for more information contact Katharine Thompson or Deans Buchanan

Alzheimer Scotland Annual Conference

3 June 2016, Edinburgh. More information is available here: weblink.

Spirituality in Palliative Care

(Organised by the Scottish Partnership for Palliative Care and Faith in Older People.) Tuesday 7 June, 10am, £75, Edinburgh. Booking is available here: weblink

Developing Effective Cancer Survivorship Services

14 June 2016, London. More information is available here: weblink or email Hanisha.

Talking about deteriorating health, treatment options and future care planning

(Organised by NHSScotland.) 15th June, Edinburgh. This workshop is part of the Effective Communication for Healthcare (EC4H) programme and is aimed at senior health and social care professionals. More information is available here: weblink.

NHS Scotland Event: Leading Transformational Change for Health and Social Care

Glasgow, 14 and 15 June. Includes a parallel session on ‘Bringing Death to Life’ . More information is available here: weblink

Is Heaven for Real? Significant Implications of Near Death Experiences

29 - 31 July 2016, Winchester. More information is available here: weblink

Hurt, Healing and Hope Conference

(Organised by the Prince & Princess of Wales Hospice.) 21 September 2016, Harper Memorial Baptist Church - 60 Craigiehall Place, Glasgow. More information is available here: weblink

Strathcarron Hospice Annual Conference: New Directions In Palliative Medicine - Living with Dying: Challenges Towards the End of Life

29 - 30 September 2016, Polmont. More information is available here: weblink.

Social Aspects of Death, Dying and Bereavement

(Organised by the International Work Group on Death, Dying and Bereavement) 5 November, Glasgow. More information is available here: weblink

Hospice UK Annual Conference – ‘People, Partnerships and Potential’

16 to 18 November 2016, Liverpool. More details will follow as the programme develops, and booking will open soon. In the meantime, you can sign-up to the bulletin to be kept informed about the latest conference news.

Let’s talk about end of life care

(Organised by the RCN and the National Council for Palliative Care with support from the SPPC.) Wednesday 30 November, Glasgow. More information is available here: weblink.

Free courses in Scotland

Free Courses in Scotland offer a number of free training courses. More information is available here: weblink.

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