Palliative and end of life care: Strategy Steering Group minutes - December 2022

Attendees and apologies

Organisations/groups represented

• Allied Health Professionals (AHP)
• Bereavement Strategic Leads
• Care Inspectorate
• Carers Scotland
• Children’s Hospices Across Scotland (CHAS)
• Convention of Scottish Local Authorities (COSLA)
• Faith in Older People
• Healthcare Improvement Scotland (HIS)
• King’s College London – Paediatric Palliative Care
• Macmillan Cancer Support
• Marie Curie
• NHS Borders
• NHS Dumfries and Galloway,
• NHS Education for Scotland (NES)
• NHS Greater Glasgow and Clyde
• NHS Tayside
• Paediatric End of Life Care Network (PELiCaN)
• Primary Care Network
• Scottish Government
• Scottish Government
• Scottish Hospices Leadership Group (SHLG)
• Scottish Palliative Care Guidelines Group)
• Scottish Partnership for Palliative Care (SPPC)
• Scottish Social Service Council (SSSC)
• Social Work Scotland - Older People’s Subgroup
• University of Glasgow

Apologies received from

• Health and Social Care Partnerships (HSCP)
• Scottish Care

Items and actions

Welcome and apologies

Chair welcomed everyone to the second 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.

At the first meeting there was discussion on a looking back event to learn lessons from the two previous strategies. Chair confirmed that this was being organised and the policy team would circulate the date for a virtual event, open to all interested parties, once a suitable facilitator is found.

Introductions and welcome to new members

The Chair invited everyone to introduce themselves.

Note of last meeting

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

Update on Governance structure and membership paper

The Chair informed the group that paper one had been updated following discussion at the last meeting and comments received since. This included the membership, where it had been agreed that the policy team would seek a social work professional to join the Clinical and Practice Advisory Group (CPAG). The Reference Group has an important role in two-way networking across multiple groups via links to Steering Group members. Further work is being done to ensure representation of people from minority ethnic backgrounds and other key stakeholders.

Update on aims, principles, priorities and approach paper

Chair reminded the group that considerable time was spent discussing paper 2 at the last meeting and thanked everyone for their contributions, both at the meeting and subsequently. There was discussion around what could be shared with the groups and networks that SSG-PC members were representing. It was agreed that the policy team would make it clearer which papers can be shared by SSG-PC members with their networks for comments as part of an ongoing review process and which need to remain confidential to the SSG-PC due to being incomplete work in progress.

Action: Updated papers attached along with the minutes after this SSG meeting will be marked up indicating they are drafts for review that can be shared.

Further comments on the paper would be accepted by email.

Palliative and end of life care (PEOLC) background evidence: relevant policies, research and data

The chair provided a background to the three papers circulated before the meeting and acknowledged that members may not have had time to look at them yet. These papers were all work in progress and together will help us build a picture of what we already know about palliative and end of life care in Scotland, including care around death and bereavement. Paper 3a provides background information on PEOLC policies, reports and recommendations. It formed part of paper two, tabled at the meeting in October. That content has been moved to a new paper 3a so that it can be developed further. SSG members were asked to provide details of other papers/reports published recently or not yet listed which might be helpful to include.

Paper 3b remains a confidential work in progress (not to be shared outside the Steering Group membership at this stage). It gives details of data which is available so far, including some that was collated by Public Health Scotland (PHS) as part of data analysis and monitoring commissioned for the Strategic Framework for Action. Further data will be provided by PHS, some of which is not open access on public websites. Preliminary data analysis is being presented at this meeting. The policy team, along with analytical colleagues within SG, are taking this work forward and will provide an updated paper 3b at the next meeting.

Paper 3c contains a preliminary list of published research from Scotland and the wider UK that will need to be developed further to include other papers, summaries and research exploring experiences of adults, children, young people, and their families. These resources offer insights into experiences of people who might not be able to take part in our planned public consultation work and complement, but do not replace, that essential public engagement. 

There was comment on whether there was anything that could be shared/considered on what makes a good strategy. The Care Home Framework was suggested as an example.

Actions: Group member’s suggestions in chat will be collated and any post-meeting information added. 

Chair, with the policy team, will continue to look at all the background information papers and incorporate new items into the next versions of the papers.

Strategy scoping data

The Senior Assistant Statistician and the Assistant Statistician from the Scottish Government’s Health and Social Care Analysis team presented their findings on data analysis and evidence on current and projected palliative care needs in Scotland. Their data report, circulated to Steering Group members, should be treated as confidential work in progress, in a similar way to paper 3b.

The data used was publicly available data as well as published academic papers.

Based on the latest mid-2020 mortality projections, if 90% of deaths might have a palliative care need, then 63,155 deaths could require palliative care support by 2040, representing a 10% increase from 2021.

There is uncertainty around these estimates due to the impact of Covid-19, particularly within the most recent estimates. 

This initial analysis is high-level and based on current available data. To provide a more robust, fuller understand of current and future palliative care needs in Scotland, the plan was to analyse the following additional data:

• hospice inpatient deaths
• location of deaths
• hospital admissions in the last six and 12 months of life

Projections of the future palliative care needs will also be developed by analysing the primary and contributory cause of death that are associated with a palliative care need.

This methodology will capture the extent of palliative care needs more fully than the simpler method presented in this paper. Analysis broken down by disease group was possible.

Some comments included:

• place of care and social factors, role of unpaid carers
• the specific needs of children’s palliative and end of life care, which is more likely to be long term and does not equal terminal care, need to separate data on children and adults
• consideration of ethnicity
• the difference in male and female PEOLC needs when females are more likely to provide a caring role at home
• data on ethnicity needs to be looked at further

The group thanked the analysts for their work. The chair responded to a query about palliative care ‘need’ by explaining that this term was being used here in relation to population data and that holistic palliative care, which people may need, is a much wider concept.

Specialist palliative care service mapping

A presentation was delivered outlining the background to the service mapping exercise, setting out as one of our early priorities and explaining the basis for the adult specialist palliative care service provision survey, which had been developed first. Further surveys on adult palliative care provision (general, where possible, as well as specialist services) designed for circulation to all Health and Social Care Partnerships and NHS boards in Scotland, including NHS24, are in development. Similar survey work is important for paediatric palliative care and transition services.

There was a time commitment to undertake such surveys, but the importance of getting voices heard and building up a whole system public health approach of specialist and general palliative care was noted, so that we understand the whole system from the perspectives of specialist services, Health and Social Care Partnerships (HSCPs) and health boards (HBs)

Comments included:

• the need to record capacity is important, as well as demand for services
• distinction between three surveys, including that the first on specialist services is around specifically budgeted functions, the second and third around broader NHS and HSCP services
• questions around demand and unmet demand, consistency, support for carers and families, and who services are reaching, some of which will be addressed by user experience and research
• it would be good to gather data on referral criteria and service resources – such as requesting patient referral flowcharts

Everyone understood this work was a big ask but crucial in addressing our stated aims and priorities; each survey will be piloted first and robust information governance put in place.

Action: Members were asked to email any further comments on the draft adult palliative care services survey to the policy team.

Any other business

An update on the Scottish Palliative Care Guidelines was provided. These will be formally adopted by Healthcare Improvement Scotland as part of their SIGN guidelines programme and resourced by Scottish Government.

There was discussion on the timescales for the strategy. We have committed to publishing the strategy within the year.

There are ongoing discussions around further proposals on public engagement and user involvement in strategy development, as well as the work on public health palliative care, and the policy team are grateful for initial approaches and offers of help. This will be an item at the February Steering Group meeting.

Dates of next meetings

Dates/invitations for the next meetings have been sent:

• Thursday 23 February 2pm
• Thursday 20 April 2pm
• Thursday 22 June 2pm