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

Review of national care standards

The Care Inspectorate have announced plans to draft overarching principles that will apply to all health and social care settings across Scotland. Consultation on the principles will take place during November. After the principles have been agreed, the next stage will be to draft generic and specific standards for health and social care services that are registered and inspected.

Health and Sport Committee inquiry into Palliative Care

The Health and Sport Committee took a range of oral evidence at its meeting on 29th September as part of its ongoing inquiry into palliative care. This included evidence from: Mark Hazelwood, Chief Executive, Scottish Partnership for Palliative Care; Dr David Carroll, Strategic Lead for Palliative and End of Life Care, NHS Grampian; Ranald Mair, Chief Executive, Scottish Care; Michael Cook, Vice-President, and Beth Hall, Policy Manager, Health and Social Care Team, COSLA; Sandra Campbell, Macmillan Nurse Consultant for Cancer and Palliative Care, Royal College of Nursing; Dr Euan Paterson, Royal College of General Practitioners Scotland; Maggie Grundy, Associate Director, Nursing and Midwifery, NHS Education for Scotland; Professor Rob George, President of Association for Palliative Medicine of Great Britain and Ireland. Medical Director St Christopher’s Hospice, Association of Palliative Medicine. The official report from this meeting is available here: weblink.

Carers (Scotland) Bill

The Scottish Parliament Health & Sport Committee has received a response from the Scottish Government to their report on the Carers (Scotland) Bill. The Scottish Government also responded to a letter from the Scottish Parliament Finance Committee relating to the Financial Memorandum. The next stage will be the Stage 1 debate on the Bill, which is expected to be on on the Thursday 5th November.

Dismantling the QOF

Health Secretary, Shona Robison, has announced that the Scottish Government plans to work with the BMA to dismantle the Quality and Outcomes Framework (QOF) system of GP payments.

Burial and cremation bill

On 8th October, Cabinet Secretary for Health, Wellbeing and Sport, Shona Robison MSP introduced to parliament the Burial and Cremation (Scotland) Bill. The Bill is for “an Act of the Scottish Parliament to restate and amend the law relating to burial and cremation; to make provision about exhumation of human remains; to make provision in relation to the inspection and licensing of funeral directors; and for connected purposes.”

Emergency Department Capacity Management Guidance

The Scottish Government has published Emergency Department Capacity Management Guidance. This guidance proposes the development of a standard operating procedure to avoid crowding by proactively managing capacity in the ED within the context of the 6 Essential Actions to Improving Unscheduled Care. The guidance includes (within Essential Action 6) a reference to the importance of supporting people to die well at home.

Funeral Poverty

Alex Neill, Cabinet Secretary for Social Justice, Communities and Pensioners’ Rights has announced that he has asked John Birrell, Chair of the Scottish Working Group on Funeral Poverty, to undertake a review of funeral poverty in Scotland and to bring forward recommendations as to how the Scottish Government could reduce the impact of rising funeral costs, particularly on people on low incomes. John is working with Citizens Advice Scotland on this review which will look at how costs can be brought down, and support for those arranging a funeral increased. The review will also look at funeral payment plans. Anyone who wishes to contact the review team can do so by emailing: funeralpoverty.scotland@gmail.com.

Audit Scotland Report

Audit Scotland have published their report NHS in Scotland 2015.

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Practice

Supporting carers at the end of life: an introductory training programme

A new online free training resource has been published, designed so that anybody with experience of training and carer support can run an introductory course on supporting carers in end of life care. The training is for delivery to support workers and volunteers who work with carers (such as family members and friends) who are providing home-based end of life care. The training is designed to give support workers and volunteers a good overview of the support needs of carers in end of life contexts, and enable them to gain confidence to work safely with carers in end of life situations.

New NICE guidance on home care for older people (England)
The National Institute for Health and Care Excellence (NICE) has published a new guideline setting out recommendations for best practice for professionals caring for older people in their own homes.

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Public and Patient Experience

The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence

Caroline Woodman, Jessica Baillie and Stephanie Sivell

The objective of this study was to systematically search and synthesise the qualitative literature exploring the preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life.

BMJ Support Palliat Care doi:10.1136/bmjspcare-2014-000794

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Academic and Research

Marie Curie Research Grants

Marie Curie has launched its 2016 call for research applications in partnership with the Scottish Government’s Chief Scientist Office and Motor Neurone Disease Association. A total of £1.425 million is available and they are calling for high quality palliative care research proposals that address one or more of the research priorities identified by the Palliative and end of life care Priority Setting Partnership (PeolcPSP). All applications should be made on the outline application form available from the Marie Curie research website. The deadline for outline applications is Thursday 14 January 2016.

Is home always the best and preferred place of death?

In this paper, Kristian Pollock questions the assumption that home is the best and preferred place of death for most people and calls for greater attention to improving the experience of dying in hospital and elsewhere.(BMJ 2015;351:h4855)

Loosening the grip

Kamran Abbasi, deputy editor BMG, BMJ 2015;351:h5372

Palliative care data collection in England
Public Health England's National End of Life Care Intelligence Network has published a statement updating on progress towards a new national data collection from specialist palliative care services.

‘It doesn’t do the care for you’: a qualitative study of health care professionals’ perceptions of the benefits and harms of integrated care pathways for end of life care

Katherine E Sleeman,Jonathan Koffman,Katherine Bristowe,Caroline Rumble,Rachel Burman, Sara Leonard, Jo Noble, Odette Dampier,William Bernal, Myfanwy Morgan, Philip Hopkins, Wendy Prentice, Irene J Higginson

(BMJ Open 2015;5:e008242. doi:10.1136/bmjopen-2015- 008242)

Palliative and end of life care for Black, Asian and Minority Ethnic Groups in Scotland
Marie Curie has published a new report on palliative and end of life care for Black, Asian and Minority Ethnic Groups in Scotland. The report highlights the barriers that can stop people from different ethnic groups accessing end of life care.

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Web News

End of Life Care Chat on Twitter

Part of the WeCommunities, #WeEOLC chats are run by healthcare professionals who believe passionately that through connecting people and sharing information ideas and expertise we can share best practice and ultimately provide better care. Find out more at @WeEOLC, www.wecommunities.org and #WeEOLC. Upcoming chats will take place on the first Tuesday of the month, 8pm – 9pm.

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SPPC News

HIS Quality of Care Review Consultation

The SPPC has submitted a response to Healthcare Improvement Scotland's Quality of Care Review consultation, from the hospice members of the Scottish Partnership for Palliative Care.

SPPC Conference 2015

We were pleased to welcome over 200 delegates from across Scotland to our Annual Conference in September. We are currently collating posters and speaker slides from the conference, and will make them available on the SPPC website in November.

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To Absent Friends festival

To Absent Friends

Across Scotland, preparations are underway for To Absent Friends, a people’s festival of storytelling and remembrance initiated by Good Life, Good Death, Good Grief. The festival will launch with a special concert at the RSNO's new centre at Glasgow Royal Concert Hall on Thursday 29 October 2015 at 6pm. The concert is the product of 6 months work by high school pupils and teachers from across Scotland, who have collaborated with musicians from the Royal Scottish National Orchestra to prepare original stories and compositions inspired by people who have died.

The To Absent Friends festival invites ordinary people to remember friends and family that have died, through a series of public events, private reminiscences and online tributes. A full list of festival events can be viewed on the website, and a range of community of events are taking place across Scotland.

Facebook and Twitter

For To Absent Friends, people are changing their profile pictures on Facebook and Twitter to that of a loved one who has died. It's a mark of respect and remembrance and an opportunity to share a story about that person.

Who will you remember? From 1 November, share your picture and a memory on Facebook or use the hashtag #toabsentfriends on Twitter.

I've changed my profile pic to my Gran, Irene Barraclough, for #toabsentfriends. Used to love visiting for a glass of sherry and a natter! [Rob Peacock]

Remembrance Playlist

Another way to remember someone is through music. Songs often remind us very strongly of particular people and on the To Absent Friends site we're compiling a list of musical dedications to those who have died, and the memories that go with them.

Visit our Remembrance Playlist page and add your song. Just tell us who it reminds you of and why.

Some interesting memories have been coming in already...

My Dad's best friend was one of the most down to earth and funny men I ever met. He lived up the road from us and spent a lot of time at our house singing "When I'm Cleaning Windows". Still makes me laugh. After he died, my Dad started to learn the banjo. [Katherine ffoulkes]

Remembering the Greats

Football fans and rugby fans are being invited to remember stalwarts of their club on our Remembering The Greats walls. The online galleries feature short stories that pay tribute to the impact people have had on the club that they loved.

It's possible to nominate anyone who looms large in the life of their club. It doesn't just have to be a player. It could be a long-serving member of staff, or a long-suffering fan. We've had some great suggestions already...

Tommy Gilmartin, club physio, was undoubtedly one of a kind - a man dedicated to his profession who neither sought nor needed recognition for the countless hours he spent treating people. Friday was meant to be his day off, but more often than not you would find a queue of people in the treatment room. No-one was ever turned away, and everyone left feeling they were one step closer to recovery. Tommy was a genuine star, an unsung hero and an inspirational role model. The world is a much emptier place without him. [Martin Smith, Brechin City Vice-Chairman]

Scottish Rugby have even put together a tribute video remembering their Absent Friends.

Share your stories of greats from your club on our football and rugby walls.

Samhain Supper

Another idea for joining in with To Absent Friends is the Samhain Supper.

Samhain (pronounced sow-inn) is the ancient Celtic celebration of the dead, traditionally held from sunset on 31 October to sunset on 1 November. Much like a Burns Supper is used to toast the memory of the great poet, Samhain Suppers are an opportunity to toast the memory of someone you'd like to remember.

Cook that person's favourite food, flick through old photos, gather round with friends and relatives to share memories of that person. Use the opportunity of good food and drink as an occasion to remember. Even a group of MSPs are getting together to hold a supper to absent friends.

If you host a Samhain Supper, we'd love to hear your stories. Let us know who you held it for and share photos if you can.

There's much more about Samhain Suppers, including links to recipe ideas and ways to share your story here.

More ideas

There are plenty of public events taking place up and down Scotland throughout the week of To Absent Friends and beyond. You can find a full list of To Absent Friends events on the website.

There are also many more suggestions on the website for ways to get involved, whether as an individual holding your own private remembrance, as a group or at a workplace. See here for ideas.

We would love you to take part and would love to hear from you if you do.

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Other News

Medical Revalidation in Scotland reports

Healthcare Improvement Scotland has published a national report and compendium of local reports of the Medical Revalidation in Scotland 2014–2015.

Funding for Huntington’s disease

The Scottish Government has announced £232,000 of funding for two separate projects to help increase understanding of Huntington’s disease(HD) , and to improve care for people living with the condition

New Chief Executive at Hospice UK

Tracey Bleakley has been appointed the new Chief Executive of Hospice UK.

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: UK end-of-life care 'best in world'

BBC News: A good death: Can guidelines really help?

Edinburgh Evening News: Marie Curie Campaign: Hospice helps in final days

Edinburgh Reporter: To Absent Friend: A Festival of Storytelling and Remembrance for Scotland

ehospice: From worms, butterflies and veils to outcomes – Scottish Partnership for Palliative Care 2015 conference

Evening Times: End of life care must be improved MSPs told

Evening Times: Dealing with cancer? You need to know about new service which will allow you to stay at home

The List: Everything you need to know about To Absent Friends

Scotland on Sunday: Lyrical film showcases patients at Scots hospice

The Scotsman: Marie Curie Campaign: Nurse on the front line

The Scotsman: New charity to promote palliative care in Scotland

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And Finally...

Each month we try to finish with something a little bit thought-provoking or different. This month, here is an article about how some hospital staff in the US are finding solace in pausing after a death.

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Courses and Events

Creating a Healthier Scotland

As part of the ongoing conversation on Creating a Healthier Scotland, the Health and Social Care ALLIANCE in partnership with the Scottish Government are planning events with Third Sector Interfaces across Scotland to allow everyone to be part of the conversation. Events currently open for registration are:
West Dunbartonshire, 29 October
Shetland, 19 November
South Ayrshire, 23 November
Glasgow, 23 November
Scottish Borders, 25 November
North Ayrshire, 27 November

Doors open day at St Columba’s Hospice, Edinburgh

30 October,15 Boswall Road, Edinburgh. For more information email or phone 0131 551 1381

Building Trust with people dealing with Loss & Transition

30 October, 2015, Clydebank. Speaker: Alison Peebles, Hospice Art Psychotherapist. (Part of the The St Margaret of Scotland Hospice Lunch & Learn Programme) For more information or to book a place contact Margaret Donnelly or call 0141 435 7017

Alzheimer Scotland Conference

3 November 2015, Glasgow. More information is available here: weblink.

Children with Exceptional Healthcare Needs Conference

4 November 2015, Edinburgh. More information is available here: weblink

End of life care in Scottish hospitals: opportunities for wider engagement

Tuesday 10 November 2015, Glasgow. 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

National Dementia Dialogue Events

A 3rd National Dementia Strategy for Scotland will be produced in 2016. Events are being held to give interested parties the opportunity to comment on the progress of the strategy to date, identify the gaps, opportunities and priorities and to help shape the direction of the next strategy.

  • 11 November 2015 - Hamilton
  • 20 November - Aberdeen
  • 25 November - Fort William
  • 8 December - Stirling
  • 14 December - Dumfries

Scottish Cancer Conference 2015

16 November 2015, Edinburgh. More information is available here: weblink.

Malcolm Goldsmith Lecture: Professor Sir Harry Burns

17 November 2015, Edinburgh.More information is available here: weblink.

Scottish Parliament Reception to mark Pancreatic Cancer Awareness Month

17 November 2015. Event sponsored by Pancreatic Cancer UK and Pancreatic Cancer Scotland and Clare Adamson MSP. To find out more or to book a place email or phone 020 7820 6707

Scottish Care National Care Home Conference 2015

20 November 2015, Glasgow. More information is available here: weblink.

Breaking the Barriers to Care: Dementia at the end of life

24 November 2015, Edinburgh. More information is available here: Weblink

Classroom to care: Tailoring your message to suit your audience

7-8 December 2015, Surrey (National Association of Palliative Care Educators). More information is available here: weblink.

PhD/MD Student Conference: Research in the field of supportive/palliative and end of life care: developing the next generation of researchers

8 December 2015, University Of Nottingham. For further information contact Kathryn Almack or Glenys Caswell.

Together for Short Lives: Two-day Masterclass on understanding and meeting the needs of young people with life-shortening conditions

Leeds 11 December 2015 & 19 February 2016

Glasgow 18 December 2015 & 8 January 2016

London 14 January 2016 & 26 February 2016

Belfast 29 February 2016 & 11 March 2016

To book a place please email Laura Dowds.

Lymphoedema: Application of Core Skills & Knowledge

18 January 2016, Glasgow. For more information email or phone 0141 3302072.

Implementing the NICE Clinical Guideline on Care of the Dying Adult

Tuesday 26 January 2016, London. More information is available here: weblink. (A 20% discount is available by quoting ref: HCUK20SPPC when booking)

Primary care in Scotland: workforce, funding and delivery of care

27 January 2016, Edinburgh. More information is available here: weblink.

Lymphoedema Specialist Practice

1 February 2016, Glasgow. For more information email or phone 0141 330 2972.

Integrating health and social care in Scotland

2 March 2016. 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

Highland Palliative Care Course: Living Until you Die - Crossing Boundaries in Palliative Care

15 & 16 March 2016, Inverness. Course details are available here: weblink

Priorities for palliative and end of life care in Scotland

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

St. Andrew’s Hospice Education Department Courses

Communication, Loss, Grief & Bereavement Skills Course

(An opportunity for accreditation through Work Based Learning)

This 2 day course is delivered over two consecutive weeks.

10 November & 17 November 2015

7 December & 14 December 2015

Introduction to Spirituality in Healthcare

(An opportunity for accreditation through Work Based Learning)

This 2 day course is delivered over two consecutive weeks.

11 December & 18 December 2015

Breaking Bad news (This one day course is for all Health & Social Care Professionals) 12 November 2015

Palliative Care for Healthcare Assistants

(This two day course is for all Health & Social Care Assistants)16 & 23 November 2015

Managing Challenging Behaviour (This one day course is for all Health & Social Care Professionals) 24 November 2015

For further information about any of the above St Andrew's Hospice courses please email Christine Reaoch or phone 01236 772017.

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