Palliative and end of life care: Strategy Steering Group minutes - December 2023

Attendees and apologies

Organisations/groups represented

• Allied Health Professions (AHP)
• Care Inspectorate
• Carers Scotland
• Children’s Hospices Across Scotland (CHAS)
• Collaborative Paediatric Palliative Care (CoPPAR) Network
• Healthcare Improvement Scotland (HIS)
• Marie Curie
• NHS Borders
• NHS Education Scotland (NES) 
• NHS Fife
• Paediatric End of Life Care Network (PELiCaN)
• Public Health Palliative Care - Compassionate communities
• Scottish Association Medical Directors 
• Scottish Care
• Scottish Children and Young Peoples Palliative Care Network (SCYPPCN)
• Scottish Government
• Scottish Partnership for Palliative Care (SPPC)

Apologies

• Head of Learning and Development, Scottish Social Services Council
• Home Care Services, Glasgow City Health and Social Care Partnership, representing social work and social care, Social Work Scotland Older People’s subgroup
• NHS Forth Valley
• public patient involvement representative
• Strategic Partnership Manager for Macmillan Cancer Support in Scotland

Items and actions

Welcome and note of last meeting

The minute of the meeting held on 14 September 2023 was agreed without amendment and the discussion meeting held on 9 November 2023 was agreed with the addition of a representative from NES to the attendee list.

Palliative care policy budget and resource

The Scottish Government Palliative and End of Life Care Unit Head ran through the current policy budget for palliative care and gave an overview of how this was currently allocated, mostly on a recurring basis. She highlighted that, in terms of the service delivery, the focus currently needs to be on leveraging and prioritising through other strategies, policies and priorities and the aim is to highlight the positive impacts on Realistic Medicine, Value Based Health and Care and GIRFE.

The Minister for Public Health and Women’s Health is very engaged on the palliative care agenda and we need to consider how best to support local governance, reporting, monitoring and evaluation and other infrastructure.

A question was raised around the funding that goes specifically to children and young people. It was outlined that there are not separate adult and children and young people budgets, but both areas are interwoven through pieces of work that are currently funded.

Members of the group welcomed the transparency, although voiced their disappointment at the fact that there would be no additional funding announced to accompany publication of a new strategy. It was recognised that it would be difficult to re-invest funding at a local level, as health boards and HSCPs are also under extreme financial pressure. 

Strategy timescales

The group were asked to give their views on the time period that the Strategy should cover, e.g. 5 or 10 years with inbuilt review periods. The Scottish Government Palliative and End of Life Care Unit Head highlighted that the SSG has been established to oversee development and delivery; there is agreement to continue the roles of a National Clinical Lead and Clinical and Professional Advisory Group; and to the establishment of a programme-based approach, with working groups and recommended actions to drive delivery.

There were varied views, and it was suggested that thought needs to be given to how long it will take to deliver on the strategy actions before it is possible to determine how long the strategy should cover. It was also highlighted that it was hoped the financial situation might have changed within 10 years. The majority of people were in favour of a five year timescale.

Validation and consultation meetings

The group were advised that the adult specialist palliative care services validation and consultation meeting, which had been due to take place earlier in the week, had unfortunately had to be cancelled, but had been rearranged for January, and that the other verification and consultation meetings were also being planned for early in the new year.

Each of the meetings would have a slightly different focus and people were asked to send details of anybody who should be included in the invite lists to the SG Policy Team.

Recommended actions

The Scottish Government Palliative and End of Life Care team leader outlined that the recommended action form had been developed to take account of asks to take a programme and project management approach to the delivery of the strategy, and to ensure that anything that goes into the strategy is deliverable and has been discussed with those who will be involved in the delivery.

Analytical colleagues have been involved in developing the recommended action form to ensure that it takes account of the theory of change approach, including monitoring and evaluation, and has also been designed to encourage thinking through the information that will be needed to complete the various impact assessments.

Consideration is also being given to adding a further field which asks groups to consider how a public health approach might be built into each of the actions. 

Working group chairs presented on the recommended actions being considered by their groups, with members being invited to comment or ask questions. It was agreed that a copy of the presentation would be circulated after the meeting. The Bereavement Working Group has been set up but has yet to meet. The chair presented on behalf of the Evidence, Experience and Outcomes Group chair and included some actions not covered by any of the current groups. 

It was highlighted that, for all of the recommendations, ‘health and care’ should be amended to ‘health and social care’.

Workforce Education, Training and Resources Working Group

It was suggested that work should be done to map how the workforce is reflecting the current education framework and its various levels. There was also discussion around being more inclusive of the social care workforce in the recommended actions, particularly as most social care learning is SVQ based. This recommendation should, therefore, potentially also include reference to other educational establishments as well. The working group chair indicated that there had been a lot of discussion on this in the meetings, but agreed that this could be reflected better in the actions.

Suggestions were also made about ensuring clear asks of NHS Education for Scotland and the Scottish Social Services Council, and thinking about where volunteers might fit into this work.

Evidence, Experience and Outcomes Working Group

It was suggested that the work around gathering and reporting data and information is critical in helping to raise the profile of palliative care. Including data on experiences and outcomes is potentially very powerful and thought is being given to reporting mechanisms.

Children and Young People’s Palliative Care Working Group

There was discussion around where it would be of value to integrate work on children and young people with wider palliative care work, and where it might be better if this is kept separate. The importance of integrating, but not burying, paediatric palliative care was highlighted.

There was also discussion around ensuring that not all of the recommendations in this area are focussed on specialist services, but that generalist services and other supporting services are also considered to ensure that the strategic objectives developed by the group can be fulfilled.

Public health palliative care

Public health approaches will be determined by experiences and outcomes and what lies beyond formal services. The recommended actions were built around five themes, with references to lead organisations for delivery. Many don’t require additional finance or resources. Integration with other public policies and legislation is crucial to aligning resources, along with guidance to support local leadership and planning; also integration with other systems (e.g. education, housing and benefits), as well as informal support. It was suggested that local libraries could be involved in information sharing with the public and had been used successfully by Macmillan and Marie Curie.

Future care planning

The National Working Group had its second meeting in December and is scoping a programme of work. Two initial recommended actions have been put forward for the Palliative Care Strategy but will need developed further. These relate to the CMO letter and terms of reference for the Group. They reflect the name change and wider scope of future care planning and delivery of a future care planning programme. Future care planning remains highly relevant within palliative care.

Population data analysis - updated paper

The chair gave a brief overview of the updated population data paper, which had been shared in advance of the meeting, noting that this was still to be kept confidential. This paper now includes the latest data from Public Health Scotland and further relevant research. The intention remains to include a version of this paper as an appendix to the strategy, as well as highlighting key findings. 

HIS Community Engagement

The chair indicated that she is continuing to update the user experiences paper presented at the last meeting with newer research and an updated version will be sent out for discussion at the SSG-PC meeting in February 2024. She also outlined work being done with Healthcare Improvement Scotland (HIS) Community Engagement team to learn more about people’s understanding and experiences of palliative care. This is being done via the gathering views programme and will include consultations with people from remote and rural communities, older people, people with experiences of specialist palliative care, carers and those able to share experiences relating to babies, children and young people. An interim report should be available in February, with the final report due in March 2024.

National Care Service

The Scottish Government Palliative and End of Life Care Unit Head gave an update on the National Care Service, noting that two letters had been sent to Parliament, which would be shared with the group following the meeting, and that the deadline for stage 1 of the Bill has been extended to 31 January 2024. Links to the letters are attached here for ease of reference:

Letter from the Minister for Mental Wellbeing and Social Care to the Convener of 11 December 2023

National Care Service

With regard to what services are within scope, there is a presumption of no ‘dis-integration’, based on the 2014 Act, unless there is evidence to suggest otherwise, and a definitive list of which community health services are in scope will not be required until secondary legislation in 2025. There are also references to a clear role for public and population health in planning and delivery.

She reminded everyone that there is an NCS stakeholder group, which may be of interest, and many SSG members may already be involved. There is also an open invitation to anyone with lived experience who wants to take part in co-design. The SG policy team will continue to liaise and communicate on any further developments.