Palliative and end of life care: Strategy Steering Group minutes - March 2024

Attendees and apologies

Organisations/groups represented

• Care Inspectorate
• Carers Scotland
• CHAS (Children’s Hospices Across Scotland)
• Collaborative Paediatric Palliative Care (CoPPAR) Network 
• Macmillan Cancer Support
• Marie Curie
• NHS Borders
• NHS Education Scotland (NES)
• Paediatric End of Life Care Network (PELiCaN)
• Scottish Care
• Scottish Government
• Scottish Hospice Leadership Group
• Scottish Palliative Care Pharmacists Association (SPCPA)
• Scottish Partnership for Palliative Care
• SPPC National Charities Group and Faith in Older People
• SPPC Specialist Palliative Care Group
• Strathcarron Hospice
• University of Edinburgh
• University of Glasgow

Apologies

• Association of Medical Directors
• Fife Health and Social Care Partnership
• Fife Integration Joint Board
• Health Improvement Scotland (HIS)
• Scottish Children and Young Peoples Palliative Care Network (SCYPPCN)
• Social Work Scotland Older People’s Sub-group
• South Lanarkshire Health and Social Care Partnership

Items and actions

Welcome

The chair welcomed everyone to the meeting.

Notes of previous meetings (December 2023)

The minute of the meeting held on 14 December 2023 was agreed without amendment.

Health Improvement Scotland Gathering Views draft report – paper 1

The chair gave a brief overview of the HIS Gathering Views draft report and noted that the draft was not for wider circulation at this stage as it is not yet fully completed or validated. The group were informed that a full report will be circulated prior to the next SSG meeting in May. 

Chair briefly discussed the initial research findings and invited comments. The group raised questions about the research population sampling and how it addressed equality and diversity of participants. People’s experiences of palliative care vary, and it is important to reflect a population wide perspective. 

Chair explained that the draft report is based on an in-depth listening exercise, involving individual interviews and focus group discussions. Its aim was to explore people’s perspectives of palliative care using qualitative methods where smaller numbers of people are invited to share their personal stories. The HIS team gathered views of people from five key groups – remote and rural communities, older people, carers, specialist palliative care service users, and parents of children and young people with life limiting conditions. 

The findings complement other understandings of people’s experiences we have from published research. We included people with some protected characteristics but are aware of gaps such as people from minority ethnic backgrounds. We will look to address these gaps proactively through the public consultation on the strategy. 

We have already planned with the HIS Gathering Views team to involve their diverse public panel members in the strategy development process. The final HIS gathering views report will be published on the HIS website and as an additional strategy paper. Steering group members are invited to send comments and queries to the policy team that can be used to inform the final analyses and reporting. 

Draft strategy - paper

The initial draft strategy (paper 2) is very much a first version that will continue to be developed over the coming weeks ahead of the next SSG meeting in May and subsequent consultations. The SSG-PC has an ongoing role in helping shape it. Chair apologised for the tight timelines in sending out papers for this meeting. 

Members were asked to reflect on the overall tone and content of the entirety of the strategy, the statements, and any clear gaps and how these can be improved. The aim is to publish a draft Strategy and additional papers in early June for the usual three month public consultation period.

As not all SSG-PC were involved in one of the consultation and validation meetings held between January and March, the chair shared a brief presentation drawn from those meetings summarising key data collected to inform the strategy development, including: 

• population data on palliative care needs from data analyses and research
• four surveys and validation meetings
• lived experiences data – research and reports
• consultation meetings on palliative care in primary care, urgent palliative care, palliative care in acute hospitals

It was suggested that all these data could be integrated more into the strategy. This has been started in the first draft and will be developed further. Additional papers with more detailed information gathered to support the development of the strategy will be published with it and the intention is to circulate these for the May SSG-PC meeting. 

Some important changes in language were highlighted, e.g. to address lack of specific meaning of “end of life" led to proposing a shift to “care around death” which some have suggested could also be phrased “care around dying”. 

The group was divided into four smaller groups to allow members more opportunities to discuss the overall content and structure of the initial strategy draft.

Comments from each group were shared with the wider group and are listed below

Breakout group one – feedback 

• need more time to consider document fully
• need more information on the process and next stage
• language is currently too passive (e.g. consider/explore) and needs to be measurable
• what do we want statutory and third sector organisations to take away from this?
• how will this inform local HSCP strategies?
• like title and length
• need to clarify terminology around “people” – does not mean babies, children and young people; means adults; how do we describe people of all ages? Suggest “children and adults.”
• structure does not quite work yet for children and young people – separate and sometimes included throughout – needs to appear consistently
• need to be clearer on what is the starting point and what is the change we want to see; how will we get there; how to issue direction; what will everyone have to do differently; needs theory of change and delivery plan; need to work together to firm up commitments and actions
• needs energised to create improvement and change
• who is “we”?
• very readable
• set out structure including an integrated delivery plan and consistent language in introduction
• need to expand equality issues
• cross linkages to other strategies
• how to make presentable and accessible without being too long
• how to prioritise funding

Breakout group two – feedback 

• there is a need to make a more clear and compelling case for change – a lot of evidence, but this swamps the issues. The Renfrewshire Strategy and the Highland Accounting for Change document may be useful to look at, as both make a compelling case
• the statements should look more like high-level outcomes
• there is a need for the strategy to show clearer accountability and responsibility
• the lack of money should not curb ambition – it is not always about new money, but about the better use of money
• the strategy needs to take more of a public health approach – it is currently too service-centred
• there is a need to make better use of the experts around the table. Would rather see the timelines extended, but only if that allows the group to feed in more, and there needs to be a plan in place for how that time would be used

Breakout group three – feedback 

• getting the language right, for example specify what is meant by ‘people’
• the structure is dense, and it could be more engaging, use narrative, and make it about people – as it stands, its very service centred
• children and young people section needs clarified - be more specific about children and young people services.
• there is a need to reflect the needs of children and young people throughout the strategy – the strategy looks like it is being written for adults – children and adults is being used interchangeably
• some facts need to be double checked, for example, the statement about more children and young people dying at home, which is not the case
• bereavement is barely mentioned throughout the document
• bereavement should be linked to all social care
• there is a need to recognise deterioration issue and the harm to the person, overall, the strategy medicalises death
• lack of recognition of the amount of care delivered at home
• 111 service is not tailored for people needing access to specialist
• the strategy is aspirational and needs to show the activities and a delivery plan – the strategy should show how actions are going to be delivered – link the delivery plan to the strategy.
• there is not enough evidence

Breakout group four – feedback 

• first draft is clear a lot of work to be done still.
• need to ensure outcomes are deliverable, what does SG want to achieve here? Scale of ambition vs achievement.
• through what lens has this been written? It needs to ensure its written for targeted reader and not clinicians and practitioners
• language needs to be clear on a public health approach
• is this a palliative care strategy or end of life strategy?
• do not understand how this strategy will work without funding for specialist palliative care services.
• what can we do over five years to be clear?
• Future Care Planning (FCP) for children - need to clarify parents’ rights and wishes for a child under 16 years

Wider discussion

These points were fed back, discussed, and reiterated in the wider group. Additional points included:

• need to refocus outcomes to a strategy of aspiration, even if this makes it longer
• emphasise support for living with serious illness, planning for life, and positive messages, especially for children and young people; noted parallel programme on Future Care Planning
• how to make “ensure” tangible?
• noted bereavement WG is at an earlier stage, and concerns were raised regarding the slow pace and lack of communication around the bereavement subgroup
• stronger links with social care
• add stories and case studies
• how to balance ambition and actions – be more ambitious and deliverability is crucial
• move from service to outcomes focus - switch to what people should expect to experience and how that will be achieved
• what will be different in five years
• need for clarity on process and timeline

Next steps

A delivery planning template, based on the value-based health and care action plan, for an exemplar action from the Workforce Education, Training and Resources Working Group (development of an online learning space/hub for palliative care education and training) was shared with the group as an example of how content from the Recommended Action forms could be presented in a strategy delivery programme. 

Group members agreed that clearly mapped steps to delivery are essential and there was discussion about whether these should be integrated into the strategy itself rather than being set out in another linked document.

It was also noted that the strategy draft will now be discussed with SG policy colleagues to ensure alignment and synergies.

Feedback will now be incorporated into the next and subsequent strategy drafts and timescales will be reviewed. Dates for ongoing SSG-PC meetings will be sent out with the meeting notes.

Post meeting note

Next planned SSG-PC meeting - Thursday, 2 May 2024 – postponed allowing more time for feedback and development of the next strategy draft

Proposed Dates of SSG-PC Meetings: 

Thursday 16th May 2- 4pm
Thursday 20th June 2- 4pm

Provisional dates in August, September and November to be confirmed.