- Adults with Incapacity Act
- SPPC Submissions to Parliament on the Assisted Dying Bill
- SPPC's draft response to the Assisted Dying for Terminally Ill Adults (Scotland) Bill
- Assisted Dying Bill Published
- Assisted Dying Bill
SG Strategic Framework for Action
The SPPC tries to make these updates as accurate, comprehensive and current as possible. Please let us know if you spot any inaccuracies or are aware of other information which could usefully and appropriately be shared.
The process of implementation is being framed by the Scottish Government in terms of the 10 Commitments set out within the Strategic Framework for Action on Palliative and End of Life care (SFA) and this update follows that structure. Scottish Government have created a page on their website relating to implementation of the SFA here
Update: May 2018
National Implementation Advisory Group
The National Implementation Group (NIAG) met most recently on 27th April 2018.
Improvement (Commitment 1)
This programme is being led by/situated in the Living Well in Communities arm of HIS (iHub). Updates about this workstream are available on the Living Well in Communities website.
The 5 HSCPs where tests of change will take place are East Ayrshire, Glasgow City, Perth and Kinross, Dundee City and Fife. Local improvement Advisors have been appointed local projects have been identified. Sites are currently identifying and planning small scale tests of change for implementation over the summer.
Western Isles/ Eilean Siar will be focussing on developing approaches to strategic commissioning.
A resource was published comparing different tools to support the identification of people with palliative care needs. An associated event is planned for May.
The final report on this workstream is scheduled for March 2019.
Guidance to HSCPs on Strategic Commissioning of Palliative Care (Commitment 2)
The Scottish Government has published Strategic Commissioning of Palliative and End of Life Care by Integration Authorities. It is an advice note, prepared to support existing statutory guidance on strategic commissioning plans and localities guidance.
Education (Commitment 3)
The Education Framework has been finalised and published. A resource to support implementation of the “Informed” level of the framework is being produced by NES and SSSC. Funding for this workstream ended in March.
Some work will continue through embedding in SSSC work plans, and positioning of palliative and end of life care with other workstreams eg dementia.
There is active exploration of how the ECHO approach can be used to support education and knowledge sharing.
An evaluation of the workstream is planned for completion by March 2019.
Palliative Care for Babies, Children & Young People (Commitment 4)
Following a stakeholder workshop in February 2018 a business case is being developed in collaboration with SG and NHS National Service Scotland to establish a national managed clinical network, benefiting from NHS NSS’s National Network Management Service.
Research (Commitment 5)
The next meeting of the Palliative and End of Life Care Research Forum is on 16 May 2018. A proposal has been made to Scottish Government to provide resource to support the development of the network.
Support greater public and personal discussion of bereavement, death, dying and care at the end of life (Commitment 6)
The Scottish Partnership for Palliative Care and Good Life, Good Death, Good Grief have published a new report looking at how to encourage more supportive attitudes and behaviours relating to death, dying and bereavement in Scotland.
A Road Less Lonely, Moving forward with public health approaches to death, dying and bereavement in Scotland explores some of the different areas that can shape people’s experiences of death, dying and bereavement. It focuses particularly on:
- Death education and bereavement support in schools.
- Workplace culture and policies.
- The role of communities.
- The practicalities of planning ahead for deteriorating health and death.
- Personal skills and knowledge relating to death, dying and bereavement.
- Mass media campaigns.
- Socio-economic disadvantage.
- Funeral poverty.
- Good Life, Good Death, Good Grief, Scotland’s public health palliative care alliance.
This report highlights a wide range of projects and initiatives ongoing in Scotland and further afield that are relevant to improving people’s experiences of death, dying and bereavement. It illustrates that Scotland there is a huge amount of enthusiasm, skills, knowledge and resources relating to public health approaches to death, dying and bereavement.
A Road Less Lonely also suggests a range of steps that could be taken to move forward this area of work, illustrating that relevant action can be taken by a range of different types of organisations, across a variety of domains.
The report was launched at SPPC’s Everyday Compassion conference exploring how to encourage open and supportive attitudes and behaviours relating to death, dying and bereavement in Scotland which took place on 25th April. Speaker slides are available on the SPPC website, and and audio recordings of presentations will be available in due course.
eHealth to Support ACP sharing (Commitment 7)
A workshop to start to consider broad parameters for a new eHealth system to support ACP and replace KIS took place on 18th January 2018. The event focussed on developing “personas” – profiles of typical users (public and professional) whose needs would shape the development of the new system. The project has committed to wider communication and engagement as work progresses.
Clinical and health economic evaluations of palliative and end of life care models (Commitment 8 )
This commitment seems likely to be informed by work on the commitments relating to strategic commissioning, research and data.
Data (Commitment 9)
A 2018-19 workplan by ISD for the development of analyses and addressing current data gaps was presented at the NIAG on 27th April 2018. A draft of the plan was circulated for comment to SPPC group members.
Bereavement
A workshop to review palliative care and bereavement content on NHS Inform is currently being planned by NHS 24.
Update: September 2017
Improvement (Commitment 1)
Dundee City is the sixth and final test site to join the Palliative and End of Life programme. Most test sites now have an Associate Improvement Advisor (AIA) in post, supporting local teams through the planned improvement phases starting with understanding current systems and designing tests of change that aim to improve identification and care coordination. Monthly project surgeries and a trimester delivery group aim to provide additional support and development. Emerging improvement themes include testing the Advanced Dementia Practice Model in the care home setting (Dundee), anticipatory care planning approach for COPD (East Ayrshire), and Enhanced Community Support (Perth & Kinross).
It is hoped that these six project areas will provide valuable information about how we can improve access to, and the co-ordination of palliative care across Scotland. As learning from the test sites becomes available (from mid 2018 ), it will be shared with all health and social care partnerships and other providers of palliative care.
Research (Commitment 5)
The working group which has supported the development of the Forum will meet at the end of August with a focus on planning the future activity and strategic development of the Forum.
Support greater public and personal discussion of bereavement, death, dying and care at the end of life (Commitment 6)
With support from Scottish Government, the Scottish Partnership for Palliative Care has recruited to a new 2-year post to support work in this area. The role will enable a scaling up of existing approaches, exploration of linkage with other work streams (eg ACP, Health Literacy) and a report to the NIAG on further areas for development.
eHealth to Support ACP sharing (Commitment 7)
A specification is being produced to develop a system to replace KIS and to support ACP more widely.
Data (Commitment 9)
A work plan for 2017-18 to be delivered by ISD has been agreed by NIAG. Work is now underway to develop routine analyses based on existing data and to address some of the key current data gaps.
Other Related Developments
Anticipatory care planning toolkit launched in June
A new Toolkit for Anticipatory Care Planning has been launched by Healthcare Improvement Scotland’s ihub. The new toolkit includes guidance for health and social care professionals, advice for individuals and downloadable planning materials.
Update: June 2017
Clinical Leadership at Scottish Government
The following is an extract from an update provided by Scottish Government relating to clinical leadership for palliative and end of life care:
“Health Improvement Scotland (HIS) have recently appointed three clinical leads who have respective expertise in primary care, nursing and social care. We have been in discussion with HIS regarding securing clinical leadership support, and have agreed an arrangement whereby these three leads will also provide advice and support to Scottish Government, to assist in the implementation of the SFA. This advice will complement the existing clinical support already available through the Chief Medical Officer’s Senior Medical Advisor on Palliative and End of Life Care. We look forward to welcoming them to the NIAG in the near future.
It is envisioned that this arrangement will not only provide a broad range of expertise from those involved in delivering palliative and end of life care, but will also strengthen the voice of expert independent clinicians in informing our work. We believe they will provide visible leadership as we move forward.”
The lead clinicians referred to above are:
- Paul Baughan, Medical National Clinical Lead for Palliative and End of Life Care, HIS
- Sandra Campbell, Nursing National Clinical Lead for Palliative and End of Life Care, HIS
- Julie Marshall will be joining HIS soon as Palliative Care Social Services Advisor
- Jeremy Keen, Chief Medical Officer’s Senior Medical Advisor on Palliative and End of Life Care (Consultant in Palliative Medicine, Highland Hospice)
Update: May 2017
National Implementation Advisory Group
The National Implementation Group (NIAG) met in April and a refreshed work plan with key actions and timelines is being developed. The next meeting is scheduled for 16th August 2017.
Improvement (Commitment 1)
This programme is being led by/situated in the Living Well in Communities arm of HIS (iHub). Dr Paul Baughan has been appointed as National Clinical Lead for the project (medical) and Sandra Campbell has been appointed to National Clinical Lead (nursing). The equivalent social work role is currently being finalised. Michelle Church has joined as National Improvement Advisor for the project. Local improvement advisors are currently being recruited by the local test site HSCPs. The HSCPs identified to date are East Ayrshire, Glasgow City, Perth and Kinross, Western Isles/ Eilean Siar and Fife.
Guidance to HSCPs on Strategic Commissioning of Palliative Care (Commitment 2)
A Short Life Working Group to develop guidance on strategic commissioning of palliative and end of life care has met three times, most recently in March, and a second draft of guidance is currently being produced.
Education (Commitment 3)
The Education Framework has been published: Enriching & Improving Experience. The focus will now shift to developing support for implementation. NES have a webpage with project updates and other resources.
Palliative Care for Babies, Children & Young People (Commitment 4)
SCYYPEx recently convened a consultation event for key stakeholders to consider the way forward for palliative care for babies, children and young people across Scotland. A formal report is expected shortly.
Research (Commitment 5)
The palliative and end of life care Research Forum has met 3 times. Notes of the first 2 meetings and presentations are available on the SG website here. Findings from a systematic review of Scottish palliative care over the past 10 years were presented at an event sponsored by Marie Curie on 11th May.
Support greater public and personal discussion of bereavement, death, dying and care at the end of life (Commitment 6)
SG has made some funding available to SPPC to support its leadership in this area, and the SPPC is currently recruiting a new post to support this work.
eHealth to Support ACP sharing (Commitment 7)
The HIS web space for the project on ACP can be accessed here. New national documentation for Anticipatory Care Planning will be launched on 7th June and you can book for the event here (currently full, waiting list available).
Clinical and health economic evaluations of palliative and end of life care models (Commitment 8 )
This commitment seems likely to be informed by work on the commitments relating to strategic commissioning, research and data.
Data (Commitment 9)
A work plan for 2017-18 to be delivered by ISD has been agreed by NIAG. The plan identifies priorities for developing routine analyses based on existing data and work priorities to address current data gaps.
Bereavement
Responsibility at SG for bereavement has moved into the SG palliative and end of life care team headed by Tim Warren.
Update: 9 February
National Implementation Advisory Group
The National Implementation Group met in December under the new Chairmanship of Geoff Huggins. There have been some changes to membership and mode of operation.
Papers from the first meeting in June are available here
Scottish Parliament Health and Sport Committee
The Cabinet Secretary for Health, Wellbeing and Sport has written a letter to the Health and Sport Committee in response to their letter requesting information in relation to progress with implementation of the Strategic Framework for Action on Palliative and End of Life Care.
Improvement (Commitment 1)
This programme is being led by/situated in the Living Well in Communities arm of HIS (iHub). Local improvement advisors and national clinical leads are currently being recruited by HIS. The HSCPs identified to date are East Ayrshire, Glasgow City, Perth and Kinross, Western Isles/ Eilean Siar and Fife.
Education (Commitment 3)
A draft Education Framework is out for consultation. The deadline for responses is 20 Feb 2017.
Research (Commitment 5)
The palliative and end of life care Research Forum has met twice. Notes of meetings and presentations are available on the Scottish Government website here. The third meeting of this forum will take place from 10am to 4pm on Thursday 23 February 2017 in Edinburgh. More information and the opportunity to reserve a place is available here: weblink
Support greater public and personal discussion of bereavement, death, dying and care at the end of life (Commitment 6)
The NIAG has asked that the Scottish Partnership for Palliative Care lead the next stage of this work.
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