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

Attendees and apologies

Organisations represented

• Allied Health Professionals (AHP)
• Care Inspectorate
• Carers Scotland
• Children’s Hospices Across Scotland (CHAS)
• Faith in Older People
• Healthcare Improvement Scotland (HIS)
• Macmillan Cancer Support
• Marie Curie
• 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 Children and Young Peoples Palliative Care Network (SCYPPN)
• Scottish Government
• Scottish Government
• Scottish Government
• Scottish Hospices Leadership Group (SHLG)
• Scottish Palliative Care Guidelines Group
• Scottish Partnership for Palliative Care (SPPC)
• Scottish Pharmacy Association
• Scottish Social Service Council (SSSC)
• Social Work Scotland - Older People’s Subgroup
• University of Glasgow

Items and actions

Note of last meeting

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

Update on Gov.Scot webpages

A brief update on the Gov.Scot web pages was provided, and a link was shared in the chat of an example to what this may look like.

It was confirmed that the GDPR policy team within SG were approached to obtain correct procedural guidance on personal data. It was agreed the policy team would send out an email of consent to list names and organisations to everyone as members of Strategy Steering Group - Palliative Care (SSG-PC), with individuals having the option to have their organisation only listed and not be named. Once the SSG-PC membership is online, there will be no need to include attendance for each meeting.

Action:

• notes of meetings to be anonymised, and the chat removed before publication on the website.

Look back, look forward – report from meeting

The group were thanked for their attendance at the Look back, look forward meeting on March 30th. the team apologised for not circulating the draft report from Animate earlier. The group was invited to comment on the report via email and informed that the policy team will share a final report before the next meeting in June.

Key points arising from the workshop were summarised. It was then discussed how this might inform the work going forward, including the need for a clear purpose and delivery plan for the strategy, outlining how outcomes will be achieved and monitored. Partnership working, collaboration and meaningful involvement from members of SSG-PC and the wider reference groups are important too.

It was advised that the group have requested a representative from social work and social care, to broaden non-clinical practice experience and expertise on the Clinical and Practice Advisory Group (CPAG).

Timescales were also discussed, as this has been raised previously as an issue, and it was suggested that it may be more realistic to think about a draft strategy being ready for public consultation by the end of December.

It was then discussed that we would bring a range of potential models to the next steering group to inform consideration of how we might want the strategy to look and be structured. We are also taking a programme approach, with implementation and prioritisation of ongoing work alongside strategy development.

The development of Equality Impact Assessments was also raised.  It was advised that the policy team would do some initial work to identify relevant impact assessments used by Scottish Government for consideration by working groups and in relation to drafting the strategy.

Actions:

• comments on Animate draft report to be sent to policy team by Monday 12 June.
• policy team to develop a draft paper outlining a range of strategy models and options for the strategy for discussion at the next meeting.
• policy team to advise on, and support relevant impact assessments.

National Care Service (NCS)

Members of the NCS Policy team were welcomed to the meeting and presented slides giving an overview and timeline of the work they have already commenced for the NCS programme.

The presentation was well-received and generated a lot of discussion.

There was discussion about the definition of community health and why there was such a focus on this.  The NCS team confirmed that this was due to the definition being in law and this being the ideal opportunity to review it.  The team confirmed that they considered the 2014 legislation and built their approach from there. They are very aware this is around social care too. Development of the NCS must be user-led, and is the focus of engaging stakeholder groups. The definition aims to set out an approach and will inform consultation and engagement.

There was discussion on the NCS’ definition of ‘people’, given that ill health affects a person but can have impacts on others as well. This is why we must take a broad perspective and not just look at, or assume, one service can meet a person’s needs but look more widely at what is happening in people’s lives. This is why the NCS teams are doing mapping of services as per the presentation.

There was discussion on patient journeys and what work had been done to identify the health and social care services involved in a patient’s journey of care. When journey of care is mentioned, the important thing is to ensure discussion includes palliative care. When we recognise the person dying that is not the end of this journey but extends through care around death and afterwards. Some people with declining health need care for extended periods.

It was stressed that lived experience means both sides of that equation, including staff.  Stakeholder engagement has been progressing, including consulting people through the NCS lived experience panel. Half of the people on that panel have experience of providing care as well as receiving it.

A short discussion then covered the importance of not designing new institutional silos.

It was agreed that follow up will be via continued collaboration with NCS teams.

Action:

• follow up on the offer to use the Chief Officer Network to encourage staff engagement

Work plan and proposed working groups update

The chair gave an update on other activities ongoing.

The previous population data paper presented to the group was being looked at with PHS to determine whether the service management information used in the report could be shared publicly and therefore used more widely, not just as a basis for setting the context for the strategy but as an appendix and in other ways.

The Adult specialist survey has now been approved by SG analysts and signed off formally within SG and will soon be issued.

The policy team is continuing to input to the new Cancer Strategy. Supportive care in cancer is part of the Cancer Action Plan, so the team leading that work from Fife (palliative care specialists and lead GP) are joining an upcoming CPAG meeting to talk about their work so we can understand better where this fits within palliative care and the strategy.

There had been discussion on SIGN’s consultation on their Deteriorating Patient Guidelines lacking palliative care content and having a short consultation over Easter. Healthcare Improvement Scotland offered to take this up with the SIGN team.

The chair gave a brief overview of the Working Group paper shared for this meeting.

The groups proposed previously were: Anticipated Care Planning (ACP) or Future Care Planning; Workforce Education and Training; Public Health Palliative Care; Children, Young People and Families; and Evidence and Outcomes.

The chair raised the ongoing concerns around the best way forward regarding Bereavement, and invited comment from members.

The topic areas for the initial working groups were based on identified areas of the strategy that need progressed now to inform the strategy or to maintain existing work and momentum.

It was suggested that a meeting should be arranged for members of the SSG-PC who have a specific interest in bereavement to discuss further how to incorporate a focus on bereavement, and how this could link to wider ongoing work. While agreeing what can, and can’t be done within the context and remit of palliative and end of life care.

Work relating to Public Health Palliative Care also needs progressed.

Action:

• policy team to set up meeting on bereavement.

Discussion took place on the right name for the education working group.  Members agreed that “workforce education”, as proposed, does keep the remit distinct from wider workforce planning, including recruitment and retention of staff. The chair confirmed this group will scope education, training and resources in the first instance.

The chair reiterated the need for cross-cutting policy work, and suggested each group takes this into consideration as they go forward.

Impact assessments were again raised and what the role of the working groups would be on these.  It was suggested a short training session for group leads might help.  It was advised that the policy team would support working groups with this aspect.

Further suggestions included that each working group have a co-chair, a patient/ public representative and a third sector representative.  Chairs will consider all these suggestions, including membership. The policy team will be supporting each working group.

Public engagement literature review

The chair provided an update on the circulated paper and apologised for it being delayed and less complete than planned, this was due to staff illness and other pressures. The questions to be explored from published reports and research link back to our aims, priorities and approach. SSG-PC members have supported collation of relevant materials, which the policy team and clinical lead will be using to provide a fuller report at the June meeting. This is a pragmatic exercise, not an academic review, but the team aims to include a table summarising the sources used. This paper will evolve over time and is a resource to help inform the group going forward so we make sure lived experience and public engagement are central to the strategy.  Healthcare Improvement Scotland offered help from the community engagement directorate of Healthcare Improvement Scotland - a new director is in post.

Public patient representatives

The two public patient representatives were asked for their comments.

It was suggested that SSG-PC papers be numbered, and one of the public patient representative hoped that comments on the lived-experience questions had been helpful. The chair thanked everyone who gave rapid feedback on them.

Any other business 

No other business was raised. 

Dates of next meeting

22 June 2023 – 2-4pm - Hybrid meeting at COSLA, Haymarket, Edinburgh, with lunch provided for those attending in person. 

Other meeting dates have now been set:

• Thursday, 14 September
• Thursday, 9 November
• Thursday, 14 December