Strategic Framework for Action

Shona Robison, Cabinet Secretary for Health and Wellbeing has written a letter to the Scottish Parliament Health and Sport Committee in response to their request for an update on the implementation of the Strategic Framework for Action on Palliative and End of Life Care (SFA).

The SPPC compiles periodic updates relating to implementation of the SFA which are available on the SPPC website.

Changes within Scottish Government

Thanks to Scottish Government colleagues for providing the update below:

"The Scottish Government Palliative and End of Life Care Team have recently moved Directorate and are now based in the Directorate for Health and Social Care Integration, rather than Person Centred Team in the Directorate for Healthcare Quality and Improvement. There has therefore been an adjustment in the chairing arrangements for the National Implementation Advisory Group on Palliative and End of Life Care (NIAG). As of December 2016 these responsibilities will transfer from Professor Craig White, (Divisional Clinical Lead within the Healthcare Quality and Improvement Directorate) to Geoff Huggins, Director of Health and Social Care Integration.

This move will align the palliative and end of life care work with the wider Health and Social Care Integration agenda, and will be helpful in supporting Health and Social Care Partnerships in the implementation of the SFA.

Clinical leadership is vital for the implementation of the SFA, and the policy team will continue to draw on that leadership from within Scottish Government and from those most closely involved in the delivery of palliative care."

Draft National Health and Social Care Standards

The Scottish Government is currently undertaking a public consultation designed to help shape the future standards and expectations of health and social care in Scotland. Full details of the draft Standards, a consultation pack and questionnaire are available on the National Care Standards website. The deadline for consultation responses is 22 January 2017. The latest Update bulletin on the progress towards the development of new National Care Standards is available here: Bulletin.

Parliamentary Questions

The Scottish Government has published answers to several written parliamentary questions relating to palliative care:

S5W-4512

Miles Briggs (Lothian) (Scottish Conservatives and Unionist Party): To ask the Scottish Government whether the Chief Executive Letter, CEL 12, which relates to hospice funding, will apply to new integrated joint boards

Shona Robison: In 2015, the year before integration went live, the Scottish Government published statutory guidance on strategic commissioning setting out that each Partnership's strategic commissioning plan should be based upon a Strategic Needs Assessment of local people, including those with palliative and end of life care needs. The strategic commissioning plan sets out how Partnerships will plan and deliver services for their area over the medium term, using the integrated budgets under their control. This includes palliative and end of life care services. Within this wider context NHS boards remain responsible for the procurement of palliative and end of life services, including those provided by Hospices. Therefore the procurement arrangements set out CEL 12 (2012), remain relevant and applicable. There are therefore no plans to update and/or reissue the Chief Executive Letter, CEL 12 (2012).

S5W-4513

Miles Briggs (Lothian) (Scottish Conservatives and Unionist Party): To ask the Scottish Government whether it plans to update and/or reissue the Chief Executive Letter, CEL 12, to each integrated joint board and, if so, when.

Shona Robison:I refer the member to the answer to question S5W-04512 on 17 November 2016. All answers to written parliamentary questions are available on the Parliament’s website; the search facility for which can be found at: http://www.parliament.scot/parliamentarybusiness/28877.aspx

S5W-4514

Miles Briggs (Lothian) (Scottish Conservatives and Unionist Party): To ask the Scottish Government how many times the National Implementation and Advisory Group for the Strategic Framework for Action on Palliative Care has met since the publication of the framework in December 2015, and when it will next meet.

Shona Robison: The National Implementation and Advisory Group (NIAG) for the Strategic Framework for Action on Palliative Care (SFA) has met once since the publication of the Strategic Framework for Action on Palliative and End of Life Care was published in December 2015. Subgroups of the NIAG have continued to meet throughout the year to progress the SFA. The group was scheduled to meet on 26 September 2016, but due to the number of apologies received this meeting was postponed until 14 December 2016.

Back to top

Carers Skills Passport consultations

The Carer Skills Passport is a way of ensuring that children and young people with complex long term conditions receive the same standards of safe, effective, evidence based, care wherever they are being cared for. A series of consultations are currently underway to establish consensus on competency levels and then the specifications for the competencies themselves. The first survey can be accessed on the carers skills passport website, where you can also sign up to receive updates on this project.

Scholarship opportunities for nurses

NHS Education for Scotland has announced that applications are open for the General Nursing Council for Scotland (Education) Fund 1983 and Margaret Callum Rodger Midwifery Award. The 2017-2018 scholarships are open to registered nurses and midwives resident and practising in Scotland, including registered nurses within the Care Home Sector. The purpose of the Fund is to provide scholarship opportunities to support educational and development opportunities which inform nursing, midwifery or community and health practice.

WHO manual on palliative care

The WHO has published a new manual: Planning and implementing palliative care services: a guide for programme managers.

Caring for families following a stillbirth or neonatal death

NHS Education for Scotland (NES) has launched two animations for healthcare professionals, one about how to discuss post-mortem examinations, and one about breaking the news of a stillbirth

Standards on Prevention and Managemenf of Pressure Ulcers
Healthcare Improvement Scotland (HIS) have published new Standards for the Prevention and Management of Pressure Ulcers. The aim of the standards is to ensure that anyone with a pressure ulcer, or at risk of developing one, receives high quality care and support no matter where the care is received for example, hospitals, care homes or being cared for at home.

End of Life Care and Human Rights

The British Institute of Human Rights has published End of Life Care and Human Rights: A Practitioner's Guide. The Guide is designed to support those working in end of life care deliver care services that respect human rights by providing accessible information about human rights and how they are relevant in an end of life care context.

Sharing current Scottish Practice

The SPPC Annual Conference in 2016 featured 36 poster displays, sharing work and research underway across Scotland. Each month, our Sharing current Scottish Practice blog focuses on the content of a few of these posters. This month, we focus on:

• A quality improvement approach to cognitive assessment on hospice admission: could we use the 4AT or short CAM?
• Addressing the Great Taboo
• Aiming to achieve realistic bereavement care throughout Greater Glasgow and Clyde
• Approaches to delivering palliative care in nursing care homes in the UK: a systematic scoping review

Back to top

Scottish Research Forum for Palliative and End of Life Care

The next meeting of the Research Forum will be on Thursday 23 February 2017 from 10.30am - 4pm in central Edinburgh. Everyone is invited to this forum where research relevant to the Strategic Framework for Action will be shared. The meeting is free and lunch is provided. Further information and booking details will be available soon. For more information please contact Prof Scott Murray or Prof Bridget Johnston.

Scottish Care survey on palliative and end of life care

Over Winter 2016, Scottish Care is undertaking a significant piece of research around palliative and end of life care. Through this they seek to:

• Gain an understanding of the level and range of palliative and end of life care support being delivered throughout the independent care sector, and any challenges associated with this delivery.
• Identify the current skills, plus the training needs, of the front line care workforce in the independent sector.
• Explore the emotional, psychological and spiritual impact on front line staff of delivering palliative and end of life care.
• Identify any recommendations which would better support palliative and end of life care delivery within an integrated workforce environment.
• Identify innovative and best practice around palliative and end of life care provision within the independent sector.

Those with managerial responsibility within organisations (owners, managers and supervisors) are invited to undertake a short survey. For more information about any aspect of this research please contact Becca Gatherum or Katharine Ross.

Together for Short Lives – Call for submissions

Together for Short Lives is inviting people to submit abstracts for short presentations or posters for their 2017 Conference. The deadline for submissions is 9 January 2017.

ISD data on place of death from cancer

ISD Scotland have published data relating to the setting in which deaths from cancer occur in Scotland for 2006-2015, taking into account demographic characteristics such as age, sex, deprivation, urban/rural classification and marital status.

Estimated and Projected Diagnosis Rates for Dementia in Scotland 2014-2020

The Scottish Government has published a first report into estimated and projected dementia diagnosis rates in Scotland 2014-20, based upon data from Health Boards in Scotland.

Developing the Senses Framework to support relationship-centred care for people with advanced dementia until the end of life in care homes

This study by Julie Watson examined the role of embodied and interembodied selfhood within care-giving/ care-receiving relationships in a specialist dementia care home.

Back to top

Marie Curie seeks patient and family stories

Marie Curie are seeking stories from individuals and families to inform their planned work campaigning for a crisis grant for people with a terminal illness:

"Money is the last thing that you want to worry about when you or a family member is diagnosed with a terminal illness. We think there should be a grant for people to help cope with the initial unexpected changes that might bring – be that loss of earnings, paying for specialised equipment or adaptations to houses, or even increased household bills. We’re campaigning to make this part of Scottish policy, but we need your help – we’d like to hear your story of why a grant would have helped you or your loved ones, or would help you now. Get in touch with us to share your story."

Shared experiences of palliative and end of life care

The Economic & Social Research Council, Marie Curie and Cardiff University have jointly published Beyond the questions; Shared experiences of palliative and end of life care. The report presents a supplementary analysis of a public survey carried out by the Palliative and end of life care Priority Setting Partnership (PeolcPSP) with the James Lind Alliance (JLA) in 2013-14. The work undertaken has produced a series of themes that provide insight into the experiences of palliative and end of life care from personal and professional perspectives.

Back to top

Sue Ryder Online Community

Sue Ryder's Online Community and Support provides support and advice to people facing the end of life and their families. It also supports people dealing with bereavement. Elinor Jayne, Policy and Public Affairs Manager – Scotland for Sue Ryder shares reflections on the online community in this blog.

The Art of Dying Well

The Catholic church of England and Wales has published a new website, The Art of Dying Well, designed to offer a helping hand to those grappling with issues around death and dying.

Back to top

Scottish Hospices: working to address the challenges facing health and social care
The Scottish Partnership for Palliative Care and all Scottish Independent Voluntary Hospices have worked together to publish a new report which explores the many ways in which Scottish Independent Voluntary Hospices support the Scottish health and social care system. Scottish Hospices: working to address the challenges facing health and social care in Scotland addresses questions such as:

• What is a hospice?
• Who benefits from hospices?
• What services do hospices provide?
• How do hospices support the wider health and social care system in Scotland?
• How do hospices help address current challenges facing health and social care in Scotland?

The report makes it clear that Scottish hospices have an essential role to play in improving care for individuals, families and communities in Scotland. By working closely with Integrated Joint Boards, hospices can bring leadership, expertise and patient-driven solutions to deliver greater value.

Building on the Best

A joint project by the Scottish Partnership for Palliative Care and Macmillan, Building on the Best is a new programme which aims to bring health professionals, patients, carers and families together to improve how hospitals support people who may be approaching the end of their life.

What next for public health palliative care in Scotland?

The Good Life, Good Death, Good Grief stakeholder group has produced a discussion paper entitled What next for public health palliative care in Scotland? The paper:

• Takes stock of previous and ongoing work in this area in Scotland.
• Explores potential future work that can usefully be taken at a national level to promote more cultural openness about death, dying and bereavement in Scotland.

The full paper can be downloaded here: What next for public health palliative care in Scotland?

Annual Conference 2016: presentations and posters

We were pleased to welcome over 200 delegates from across Scotland to our Annual Conference in September. Footage of plenary speakers and PDFs of posters are now available on the SPPC website.

Annual Conference 2017 - Save the date

Next year's Scottish Partnership for Palliative Care Annual Conference will take place on Wednesday 20 September 2016 at the Royal College of Physicians of Edinburgh. We welcome ideas of topics and speakers for the programme – please get in touch if you would like to make a suggestion.

To Absent Friends Festival

To Absent Friends, Scotland's festival of storytelling and remembrance, drew to a close last month, after an event-packed week that saw people across Scotland taking time out to remember and tell stories about loved ones who have died. A photo gallery showcasing just a few of the amazing variety of events that took place is available here: photo gallery. If you took part in the festival and would like to share your experiences, please get in touch.

Back to top

Palliative and End of Life Care vacancies at Healthcare Improvement Scotland

• National Clinical Lead (Palliative and End of Life Care) – Nursing
• National Clinical Lead (Palliative and End of Life Care) – Consultant
• Social Services Advisor (Palliative and End of Life Care)

The closing date for applications is 9 January 2017 at 12 noon.

Dying to care - A report into social care at the end of life

Marie Curie has worked in partnership with MND Scotland, the Association of Palliative Care Social Workers and Hospice UK to publish Dying to care – A report into social care at the end of life. The report looks at social care provision for people with a terminal or chronic condition and those at the end of life, and makes a number of recommendations of improvements to services.

Event Report: Challenging inequities in palliative care

Marie Curie has published a report of its seminar Challenging inequities in palliative care, which was held on 15 September 2016 in Edinburgh.

Funeral poverty report

Stirling Citizens Advice Bureaux have published Unmarked; National Assistance Funerals and the Consequences of Funeral Poverty, exploring the findings of a study which sought to examine the prevalence of national assistance funerals across Scotland and, more specifically, to investigate whether the shift in trend encountered in Stirling in relation to the reasons given for a funeral translated across Scotland.

St Andrew's Hospice Decant Plans

St Andrew’s Hospice will undertake a refurbishment of their Henderson Street building commencing early 2017 and lasting around 15-18 months. During the refurbishment they will continue to provide inpatient specialist palliative care services from their decant facilities at Wester Moffat Hospital in Airdrie. More information is available here: weblink.

Palliative and end of life care intelligence network (England)

Public Health England's Palliative and end of life care intelligence network has published its November e-bulletin.

Opportunity: SCPHRP Visiting Expert

The Scottish Collaboration for Public Health Research & Policy (SCPHRP) are currently accepting applications from local stakeholders in the Third Sector and community groups, professional public health positions, and public sector health policy fields, for the non-remunerated position of SCPHRP Visiting Expert. This is a part-time position (perhaps one-half to one-day monthly), the function of which is to work with SCPHRP staff and Fellows on applied research, and/or knowledge-exchange project(s) of mutual interest, bringing diverse “real-world” expertise relevant to our mandate. The post-holder will gain experience working at the interface between policy, research and practice, and will contribute to a project in their field of interest. For further information on the role and application process, please visit the SCPHRP website.

In the meda

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 few months. For more media coverage relating to palliative and end of life care, check out the eHospice website.

BBC: More help for children dealing with losing a parent or sibling

The National: Festival of death aims to challenge attitudes and celebrate life

The Scotsman: Support for NHS staff to help bereaved parents

The Scotsman: Changing a pill for every ill attitudes is a welcome move

The Scotsman: Scottish Huntington’s disease patients missing out on care

The Scotsman: We need fresh look at end-of-life care

The Times: Warning of care crisis as dying forced to wait months for support

Back to top

SPPC Annual Conference

Next year's Scottish Partnership for Palliative Care Annual Conference will take place on Wednesday 20 September 2016 at the Royal College of Physicians of Edinburgh. More details will follow as they become available.

Next steps for primary care in Scotland

Organised by Scotland Policy Conferences. 18 January 2017, Central Edinburgh. More information is available here: weblink.

Transforming End of Life Care in Acute Hospitals

Organised by Healthcare Conferences UK. 20 January 2017, London. More information is available here: weblink or email Nicki for details.

Palliative Care for the under 5s

Organised by CHAS and NHS Lothian. 2 February 2017, Edinburgh. Free All day Event. More information is available here: weblink

Being There: The Front Line Workforce and End of Life Care

Organised by Scottish Care. 8 February 2017, Glasgow. More information is available here: weblink.

Essentials in palliative care - living till death

Organised by Highland Palliative Care Quality Improvement Group. 14 & 15 March 2017, Inverness. For more information email Sharan Brown or phone 01463 246470 ext 265. Book by 19 December 2016.

Continence Without Borders

Organised by the Association for Continence Advice. 22 - 23 May 2017, Belfast. More information is available here: weblink.

Defining moments in children’s palliative care: Transforming the family experience

Organised by Together for Short Lifes, 10 & 11 May 2017, Birmingham. More information is available here: weblink.

5th International Public Health & Palliative Care Conference

17-20 September 2017, Ottawa, Canada. More information is available here: weblink.

Palliative and end of life care in Scotland - commissioning, public awareness and delivering best practice

Organised by Scotland Policy Conferences. 25 May 2017, Edinburgh.

Courses offered by St Columba’s Hospice, January – April 2017

MSc in Palliative Care: Shadows & Horizons: Advancing Palliative Care Practice

Graduate Certificate in Palliative Care: Caring for the Patient & Family in Palliative Care

More information is available on the St Columba’s Hospice website.

St Margaret of Scotland Hospice courses

For more information about any of the courses below, please contact Margaret Donnelly, Programme Co-ordinator, St Margaret of Scotland Hospice, tel 0141 435 7017.

Introduction to Palliative Care

Starts 18 January 2017

Symptom Assessment & Management

Starts 5 April 2017

Introduction to Palliative Care

Starts 16 August 2017

Loss, Grief & Bereavement

Starts 13 September 2017

Back to top

...in each edition of Update we try to end with something a little bit thought-provoking or different... Scottish Care are collating a new resource to support people in Care Homes to deliver high quality palliative care. Do you have experience of working in care services and supporting someone through palliative and end of life care? Could you contribute a poem, a reading, a saying, a picture, or a piece of music which ‘speaks to me’ about caring for someone who requires palliative or end of life care? If so, please get in touch with Becca Gatherum.

Back to top