Palliative and end of life care: Strategy Steering Group minutes – February 2023

Attendees and apologies

Groups/organisations represented:

• Allied Health Professions (AHP) Leads
• Bereavement Strategic Leads Group
• Care Inspectorate
• Carers Scotland
• Children's Hospices Across Scotland (CHAS)
• Dundee Health and Social Care Partnership (HSCP)
• Faith in Older People
• Healthcare Improvement Scotland (HIS)
• Macmillan Cancer Support
• Marie Curie
• NHS Board Medical Directors Group
• NHS Borders
• NHS Dumfries and Galloway
• NHS Greater Glasgow and Clyde
• NHS Tayside
• Paediatric End of Life Care Network (PELICaN)
• Primary Care Network
• Scottish Care
• Scottish Government
• Scottish Hospices Leadership Group (SHLG)
• Scottish Palliative Care Guidelines Group
• Scottish Partnership for Palliative Care (SPPC)
• Scottish Pharmacy Association
• Scottish Social Services Council (SSSC)
• Social Work Scotland (SWS) - Older People's Sub-group
• University of Glasgow

Apologies received from:

• Kings College London - Paediatric Research
• NHS Education for Scotland (NES)

Items and actions

Welcome, introduction and apologies

The Chair welcomed everyone to the third meeting of the Strategy Steering Group for Palliative Care. Most positions on the Steering Group are now filled and the policy team is working on the remaining gaps.

Note of last meeting

The note of the last meeting was accepted as a true record.

Strategy programme/workplan

The Chair presented slides which provided an overview of the workplan for the strategy, following discussion at the previous steering group meetings. This confirmed the working title for the strategy which was still under discussion. The title and subtitle seek to reflect the main aims of the strategy – equitable services for all and a public health approach.  

It was important to consider the development of the strategy within the context of Getting It Right For Everyone (GIRFE), the model that is a key part of value based health and care in Scotland. A generic example of a GIRFE wheel diagram was included in the SSG-PC paper – Palliative Care Strategy Project Programme (draft). This example can be developed into one for Palliative Care. The Chair confirmed that it would reflect palliative care, including carers. Members of the SSG-PC were invited to volunteer to help work on the Palliative Care GIRFE. A table from the paper was presented to show a draft programme of work for the rest of 2023, with priority given to aspects already discussed by the SSG-PC and included in our strategy Aims, Principles, and Priorities. The wider work of the policy team was highlighted, along with contributions to several other Scottish Government strategies that are ongoing, including the Cancer Strategy and the Care Homes Framework.  

Strategy communication - the policy team are updating the palliative and end of life care information on the Scottish Government website, which will continue to be updated on a regular basis to provide publicly available updates on the strategy development. The SPPC newsletter will include a link to the strategy information and the intention is to post agreed papers and SSG-PC meeting notes.

The Aims, Principles, Priorities, and Approach paper, as previously agreed by the group, had been submitted to the Minister for Public Health, Women’s Health and Sport for approval. (Post meeting note – this has now been approved)

The SSG-PC were informed that the agreed ‘Look Back, Look Forward’ session would be held on 30th March, open to all SSG-PC members, and facilitated by an independent company. Further information would follow. There was discussion on whether that session, and future meetings, could be offered on a face-to-face basis with an online option for members who would find it difficult to travel to meetings. The policy team will explore options for future meetings. (Action: Policy Team).

There was discussion on getting a better understanding of what PEOLC services were being provided and how these would be picked up in the planned service surveys, which are being developed by CPAG, with advice from the Government data analysts, and in collaboration with SPPC. An initial discussion on the development of a paediatric specialist services survey, building on previous surveys, would be taking place the following week. (Action: CPAG and Policy Team)

The issue of risk assessment of the strategy was raised and how this would be looked at. The policy team agreed to take this forward and look at options. (Action: Policy Team).

There was discussion about how to ensure effective delivery of the strategy, and it was suggested that successful implementation is more likely when there is joint agreement, consensus and ownership of the strategy and actions, with outcome measures and monitoring planned at the outset.

It was highlighted that the policy team is also supporting Ministers with a range of meetings, events, and parliamentary business relating to palliative care over the next few weeks. This role runs alongside strategy development.

The Chair then outlined a possible approach to setting up a series of Working Groups for the SSG-PC members to consider. These groups would take forward specific streams of work relating to the strategy overall. Most would be delivering some current priorities while contributing to the strategy development itself and would then continue as part of the strategy implementation process. Provisional Development Groups include: 

• Anticipatory Care Planning (ACP): the policy team now has strategic responsibility for ACP alongside its remit for the Palliative Care Strategy
• Education and Training: this could include links to the Scottish Palliative Care Guidelines and a wider remit covering training for social care staff, as well as those working in health care. An example of priority work that is already underway is that the Palliative Care Guidelines are now placed with the SIGN guidelines team at HIS and the process of transition of the current website guidelines content to Right Decisions should be completed in the next few months. This national platform will provide easy application access for all clinicians to all the guidelines content and replaces the now obsolete Guidelines app. 
• Public Health Palliative Care, including health literacy
• Children, Young People and Families
• Evidence and Outcomes

The memberships, more detailed remits, and terms of reference of the groups is being considered and the policy team will bring this back to the next SSG-PC meeting. (Action: Policy Team).

There was a discussion about whether bereavement should be prioritised as a specific Development Group and there was support for this position from some SSG-PC members. The chair acknowledged the importance of bereavement, which is reflected in our Aims, Priorities, and Principles paper, but also noted that there would need to be careful consideration of the number of groups, given the resources available.

The policy team updated the meeting on the policy position of bereavement within the Scottish Government, which sits within Mental Health. Bereavement remains a cross-cutting issue across many policy areas and the policy team are involved, for palliative and end of life care (PEOLC) purposes, and committed to ensuring bereavement work is considered wherever that is appropriate within our development groups.  

Working Group 1 – Anticipatory Care Planning (ACP)

The group discussed draft proposals for work on ACP based on the SSG-PC background paper on ACP. The next step will be an internal meeting with a wide range of policy teams with an interest in ACP to ensure a policy relevant to all areas of primary and secondary care, as well as PEOLC, is developed. The policy team and clinical lead are working with the ReSPECT collaborative and NES Digital as well as having meetings with other key stakeholders. The most recent version of the ACP paper to be circulated with the meeting notes. (Action: Policy Team)

Strategy scoping - data update

SG Analytical Services presented updated data analyses and evidence paper and slides following discussion at the last steering group meeting. This included additional information from Public Health Scotland and remains not for wider circulation at present as it contains confidential service management information. 

The paper was well received. It was noted that paediatric data and information would be collated separately and there were requests for further equalities data where possible. 

Strategy public engagement 

A paper from the SPPC Charities Group on the strategy commitment to public engagement was presented. The paper discussed what this commitment might mean in practice and outlined some background information and models on effective and ethical public engagement. These covered a range of purposes for engagement and inclusivity across different groups, as well as ways of involving people with lived experience within a spectrum of power and influence.  

The paper had different options for different purposes and stages and complements current work on reviewing the existing evidence base to identify what we know, and what gaps we need to address. It was suggested that once this review of evidence is complete, SG policy team will meet with the SPPC Charities Group to discuss possible ways forward.

It was stressed that engagement should include equality and minority groups, which is something we are all responsible for, and should also include front line staff. 

Specialist palliative care service mapping update

Latest version of the specialist adult service survey was circulated for comments from SSG-PC. Any further comments should be sent to the policy team.

Palliative and End of Life Care Strategy look back look forward meeting

This was discussed earlier and will take place on 30 March 2023.

Any other business

No other business was raised.

Dates of future meetings

Dates/invitations for the next meetings have been sent:

• Thursday, 20 April 2pm
• Thursday, 22 June 2pm

Directorate for Healthcare Quality and Improvement: Older People’s Strategy and Palliative and End of Life Care Unit.
March 2023