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

Attendees and apologies

Organisations/groups represented

• Allied Health Professionals (AHP)
• Care Inspectorate
• Children’s Hospices Across Scotland (CHAS)
• Faith in Older People
• Greater Glasgow and Clyde Health and Social Care Partnership (HSCP)
• King’s College London – Paediatric Palliative Care
• Macmillan Cancer Support
• Marie Curie
• NHS Borders
• NHS Education for Scotland (NES)
• NHS Greater Glasgow and Clyde
• NHS Tayside
• Paediatric End of Life Care Network (PELiCaN)
• Primary Care Network for Palliative Care
• Scottish Children and Young Peoples Palliative Care Network (SCYPPN)
• 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

Apologies received from

• Argyle and Bute Social Work and Social Care
• Bereavement Strategic Leads
• Care Inspectorate
• Carers Scotland
• Healthcare Improvement Scotland (HIS)
• Minority Ethnic Carers of People Project (MECOPP)
• NHS Board Medical Directors Group
• NHS Dumfries and Galloway
• Scottish Care

Items and actions

Note of last meeting

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

Breakout groups: discussion

The meeting chair introduced the main topic for the meeting – small group discussions about what the new strategy should look like and its content. Paper 1 and paper 2, circulated before the meeting, informed this discussion, with two groups in the room and one online.

A Clinical and Practice Advisory Group (CPAG) member chaired each group and shared a summary of the key points. Groups began with the most important learning from previous strategies that can inform development of the new strategy.

Learning from look back, look forward meeting

General points taken from all the group discussions

• a thorough report – key messages broadly reflect what was said, although could have said more about the importance of collaborative working locally and nationally and the need to build on existing partnerships
• a key message is that Scotland has a vibrant and effective palliative care community across a wide breadth of areas of skill, engagement, and expertise. We should recognise, celebrate and utilise this foundation. For example, clinical staff and teams, researchers and third sector organisations already work together well
• grow what we do well and make best use of all available resources
• clear about how change will come and who is responsible and accountable, with leadership nationally and locally
• clear implementation and evaluation plan needed. “You said, we did” style is a good option. Implementation at local level is key
• if there are going to be responsibilities for boards and HSCPs we need to look at how that is resourced and make sure the strategy realistically reflects that
• there is value in signalling priority nationally at the centre; need top down and bottom up approach; National - Local: getting this right and bridging effectively across this interface matters. HSCPs as fulcrum of local/regional systems for their populations need support and clarity from the national strategy. Local level accountability and leadership essential. What supports everyone on the ground is a good question to keep in mind; how to bring Integration Joint Boards (IJBs) and HSCPs along and also include focus on regulators as a driver and scrutiny as a lever
• some work will need to be national
• strategy should be ambitious but realistic/achievable – timeline affects this

Strategy models and approaches

Three broad areas were suggested as prompts, but led to a wider discussion:

• how can the strategy layout encourage change and improvement?
• who are we communicating with? Key messages for different audiences
• how can we capture our strategic ambitions alongside a delivery programme of ongoing actions, monitoring, and evaluation?

General points taken from all the group discussions

In general, the strategy should:

• be clear on who it is for/speak to a wide range of people
• understand who we are communicating with, and why
• be readable/user-friendly (no abbreviations; cited Mental Welfare commission as good example
• use case studies and pepper with examples
• be based on engagement with the public
• be person-centred for staff, partners, and the public too – needs to be relatable too
• be clear on plans for implementation
• be measurable
• have clear outcomes, have ‘teeth’
• have infrastructure to support delivery
• needs engagement and traction with people in the Health and Social Care system
• say how people will be held to account, who is responsible for what
• be succinct
• understand population demand and public health context (finance/housing in proper context, socioeconomic and intersectionality factors)
• have a clear and measurable implementation and evaluation structures
• build in conditions for change
• how to be a beacon across all other strategies

Title: Palliative Care for All: a strategy and delivery programme - ‘Working together to strengthen communities and provide equitable services’

'Equitable' could be challenging - people don't normally know the nuance between equitable and equal access to services, but it's important to keep it in there.

Strategy layout

• potentially like the option used in England (Ambitions for Palliative Care) merged with Health and Social Care Standards model in terms of some of the ways things are worded
• priorities can vary from place to place (e.g. in different boards) - but priorities could sit underneath ambitions
• like the “ambitions approach” with context as part of introduction then ambitions in the body
• lean towards "ambitions" type approach as seems most aligned to person-centred/public facing/engagement form
• like the foundations as basic infrastructure/common components/conditions for change, e.g. workforce, leadership, digital, data etc.
• what we want the focus to be will dictate the structure - whether it follows the priorities that we have come up with or see what comes up in engagement
• hard to say without content being more established, but need to be sure we keep person-centredness at heart of it all
• mix of words and visuals/infographics (Getting it Right for Everyone (GIRFE) model can work well). Sometimes flowcharts work
• case studies not just about individuals and families, but delivery partners; those with responsibilities, etc. to increase ownership
• top with population demands and needs; high level ambitions, clear implementation, recognise lived experience, reflect fullness of life and equity of access, including rural

Strategy content

• definitions - will need to spend a lot of time on this
• needs to include something about people having a voice
• recognise lived experience and keep on recognising this/engaging/co-design
• audiences include the Scottish population as human beings across lives and working lives, and public institutions
• transmit clear messages about palliative care to all audiences
• we currently have 13 priorities – need to consider how to corral, prioritise, finesse; take out overlap
• children - ensure where life span components can be used, clarity is given that it applies from birth onwards. Some specifics may be needed re: paediatric palliative care, as well as including plans for all ages
• need to be clear about specific nuances around different age groups - not just young people but older people also (care homes have their own challenges)
• ideal would be ambitions that suit all, with additional ones for children if needed
• feedback from working groups will provide content and inform how we write the strategy
• some working groups may be quite contained but others could end up being huge and come up with other approaches
• understanding and responding to population need (ask when not known and do when known) - you said, we did
• link ambitions/actions to HSCP systems for effective local delivery
• equity of access - be clear for who and for what across different domains
• needs to address medicines strategies - 24 hour access to medicines needs to be included
• needs to include care in the community and out of hours
• need to reflect the voice of people and advocacy; support when someone is dying
• address commissioning
• social care
• research and future

Working group updates

Each working group chair gave an update:

Workforce Education, Training and Resources Working Group

Good progress with setting up the working group and planning for a first meeting during the summer. The group members are representing key organisations and providers. First aim is mapping and scoping to understand more about what workforce education resources and training are there already, and how to access these resources, creating the right platforms for access.

Children and Young People’s Working Group

Group working on developing a paediatric palliative care services survey, with questions for health boards and HSCP’s. Membership of the group expanding with PELICaN and Scottish Children and Young People’s Palliative Care Network (SCYPPN) part of the group alongside CHAS. SG analytical colleagues, our paediatric research lead, and a parent of a young person with life shortening conditions are also in the group.

Evidence and Outcomes Working Group

Group progressing data gathering and analysis work to build our understanding of service delivery across Scotland. The survey of adult specialist services is underway. The two other surveys are being worked on. The group has expanded its membership to include SG and Public Health Scotland (PHS) analysts and a Hospice UK representative. Also making links with other Government initiatives around patient experiences and outcomes.

Future Care Planning Working Group

Main focus has been multiple consultation meetings to understand wider work on future care planning in Government and by lead clinicians, organisations and services across Scotland, as well as seeking views on the proposed change of name to Future Care Planning. These included meetings with colleagues from different health and social care policy areas across the Scottish Government, discussions with NHS boards leading on ReSPECT implementation, and with colleagues in NHS Education for Scotland and Healthcare Improvement Scotland. Some group members and a co-chair have been invited, but the group is still being established. A submission to ministers outlining the change of name and proposed work plan is being finalised. We hope to have a full group meeting after the summer holidays.

Bereavement Working Group and Public Health Working Group

A Bereavement Working Group is important and we continue to consider the potential remit of that group and are awaiting responses to the imminent launch of the Bereavement Summit Report. The ten recommendations in the summit report would need explored further to identify what can be done within a palliative care strategy context. Further consideration and discussion to continue after the summer.

The importance of Public Health Palliative Care is clear in the strategy’s aims and principles, and these are distinct from bereavement. SPPC has offered to provide leadership and administrative support for a Public Health Palliative Care Working Group, and further discussions with the policy team are underway about setting up this group.

Updates on other work – communication and public engagement

The Strategy webpage plan has been sent to the relevant IT team and we hope this will soon be live. The page will be used to share publicly available information and updates on the strategy work, including minutes and some papers from the SSG-PC meetings.

There has been a conversation with the HIS Community Engagement team about the possibility of consulting their Public Partners Panel about the strategy approach and supporting public engagement and consultation via the Gathering Views programme.

Strategy development – summary and next steps

The overview plan for next steps of the strategy development work was described. All comments from the discussion groups will be collated, along with any other comments SSG-PC members would like to send to the policy team email. An updated version of paper 2 (Strategy Models and Approaches) will be shared with SSG-PC members in July so they can gather some further views from their organisations and colleagues and send this back to the Policy team by the end of August. It is hoped that most of the working groups can meet over the summer, taking forward their workstreams in advance of the next SSG-PC meeting in September. 

It was agreed that the outputs of this process and a Strategy Models and Approaches draft paper (version 3) will be shared with the SSG-PC for discussion at our next meeting in September.

There are still some important areas not covered by the working groups, including general palliative care in the community (primary care, care homes and care at home) and general palliative care in acute hospitals, and plans are underway to explore the best approaches for addressing those areas.

It was also agreed that an outline process map with indicative timelines would be produced for the next meeting. It is still the aim to have a draft strategy by the end of the year for public consultation.

Regarding membership of working groups, members were asked to contact group chairs if they wished to discuss contributing to a working group. A concern about third sector involvement in the working groups was raised. The SSG-PC has strong third sector representation and oversight of the working groups. Working groups aim to involve experts in each area and include people who are not SSG-PC members.

The timing of the introduction of the National Care Services was raised, and how this group would input into it, and how the timing may affect the strategy – with a previous strategy being affected by the introduction of health and social care integration. The NCS team were happy to present at the previous SSG-PC meeting and the policy team remain in regular in contact with colleagues working on the NCS.

Public patient representatives

It was suggested to draw on the expertise and enthusiasm of the many people/volunteers working with third sector organisations to engage on and help us promote the strategy and palliative care.

Any other business

The next hybrid meeting will take place at 14:00 on Thursday, 14 September via Teams and at Clayton Hotel, 298 Clyde St, Glasgow G1 4NP.