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

Attendees and apologies

Organisations/groups represented

• Association of Medical Directors
• Care Inspectorate
• Carers Scotland
• CHAS (Children’s Hospices Across Scotland)
• Fife Integration Joint Board
• Fife Health and Social Care Partnership
• Health and Social Care Partnerships
• Macmillan Cancer Support in Scotland
• Marie Curie
• NHS Board Bereavement Strategic Leads
• NHS Borders
• NHS Dumfries and Galloway
• NHS Education Scotland (NES) 
• NHS Lanarkshire and South Lanarkshire Health and Social Care Partnership
• NHS Tayside
• Scottish Care
• Scottish Children and Young Peoples Palliative Care Network (SCYPPN)
• Scottish Government
• Scottish Hospice Leadership Group
• Scottish Network for Acute Palliative Care (SNAPC)
• Scottish Social Services Council (SSSC)
• Scottish Partnership for Palliative Care (SPPC
• Social Work Scotland Older People’s Sub-group
• SPPC National Charities Group and Faith in Older People
• Paediatric End of Life Care Network (PELiCaN)
• University of Edinburgh
• University of Glasgow

Apologies received from

• King's College London
• Healthcare Improvement Scotland

Items and actions

Welcome 

It was raised that the lead on the Scottish Palliative Care Guidelines was now retired from her role and thanks for her huge contribution over many years were noted. Her replacement as clinical lead for the Guidelines programme is starting soon, but has a different professional background. A new lead pharmacist is being invited to join the SSG-PC. 

The SG website now includes two initial pages on the Palliative Care Strategy, and more work is to be done on developing these. There is a strategy overview page and a page on the SSG-PC with names of those who agreed to publication. Some of the links are not working yet (e.g. to the Aims and Priorities paper). The aim is to publish approved papers and redacted minutes on the website. SSG-PC members were asked to check that their details are correct on the website and let the policy team know if any corrections are needed.

Note of last meeting

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

Working group updates

The chairs of each working group presented slides and gave a brief overview of the membership, terms of reference (included in SSG-PC papers) and current and planned activities of their group. 

Palliative Care for Children and Young People Working Group 

The Palliative Care for Children and Young People Working Group has been focusing on completing work on their survey and the aim is to get this out in the near future. No questions were asked.

Evidence, Experience and Outcomes Working Group

The Evidence, Experience and Outcomes Working Group has an amended name because the remit of the group has broadened to include lived/user experience.

Discussion and comments covered several topics in relation to the presentation. We may be seeing changing trends around place of death and place of care since the pandemic but it is not clear if these will persist. Stirling University has recently published a paper on place of death that suggests that this may be changing. It would be good to have information about the role that unpaid carers play in place of death and to understand the demographics around this better, as well as future projections. It would also be useful to understand the priorities and wishes of carers better, alongside those of the service users themselves. Marie Curie is currently doing a survey around carers' experiences, designed to inform their services, although they are happy to share the results. This is an example of overlap with the public health palliative care work for the strategy.   

It was highlighted that many factors, including location (rural vs. urban) and household membership, are predictors of admission to hospital during the last six months of life. There was general agreement that place of death on its own has many limitations and is not a reliable outcome measure for care quality.

It was suggested that there is perhaps a gap in the membership of the Evidence, Experience and Outcomes Working Group if it is to contribute content on user/lived experience to the strategy. SSG members were invited to suggest additional people to join the working group who might fulfil this role. 

In relation to discussion around financial planning for the strategy, it was suggested that any new work should undertake a Business and Regulatory Impact Assessment (BRIA) and a question was raised about whether that would fall within the remit of the EEO Working Group. It was noted that the policy team have already clarified at a previous meeting that we would consider all the necessary impact assessments for the strategy and various work strands and working groups, and this will now be added to the delivery plan.

A question was raised about where transition from childhood to adulthood sits, and it was noted that it sits across both the Evidence, Experience and Outcomes Working Group and the Children and Young People Working Group, hence the need for groups to work collaboratively on shared remits.

There was a further question around the approach to looking at costs and impacts of costs. It was agreed that the issue of funding and costs would need to be revisited in due course. 

Workforce Education, Training and Resources Working Group

It was highlighted that there is a lot of cross-over with work done previously by a Health and Social Care Working Group that looked at Spiritual Care, so it would be useful to share learning through the chair of that group, who also sits on the SSG Education, Training and Resources Working Group. It was also noted that it is key to ensure any training and resources are suitable for the whole workforce, including social care staff. Work can be done around building on the NES Palliative Care Education Framework, and potential to link this into the SSSC Framework. It was highlighted that the working group isn't waiting for the strategy publication to begin its work – some actions are moving forward already – and, given the complexities of what it aims to achieve, its work will continue after publication. 

It was suggested that different generations learn in different ways, and it is important to adapt and include other forms of learning and approaches to enable different staff groups to access education than are used currently. Value-based healthcare and Realistic Medicine programmes already include useful resources on the NHS Education for Scotland website that may overlap with palliative care, and which could be incorporated. It is important to pull in other relevant education resources in Scotland and from the wider UK (if applicable) and to make these easy to find and access, perhaps via a palliative care education ‘landing webpage’. The challenges of getting palliative care included in undergraduate and postgraduate training curricula was discussed in relation to doctors and other health and social care professionals and staff. It is still very limited in many courses.  

A question was asked on whether the scoping exercises being carried out by the working group will also look at what is provided for third sector organisations. It was confirmed that it would.

It was also suggested that inspections of training programmes could cover requirements for training and asking questions around other topics (e.g. around Realistic Medicine, as is happening with undergraduate medical programmes) could encourage or set expectations around training and education in palliative care. 

Future Care Planning Working Group

This group will have its first meeting on 28 September and already has a diverse and evolving membership given its broad scope and remit. It was noted that there is no social work or social care representation on the group. Group members were asked for suggestions. 

It was suggested that consideration should be given to the importance of involving unpaid carers in future care planning conversations. This has already been recognised as important.

Public Health Working Group

The chair presented on the Public Health Working Group, which has started its programme of work with a tight schedule of meetings and papers being produced by group members. Members of the SSG were asked to feed any thoughts or suggestions for that group to the chair via the Scottish Government mailbox.

Bereavement Working Group

It was indicated that the group of SSG-PC members that met in May would be recalled to discuss setting up this working group.

Lived experiences paper and Palliative Care Population Data: update paper  

The SSG-PC had received papers in advance of the meeting consisting of a pragmatic review of published research and reports giving firsthand accounts of lived experiences and an updated version of the earlier palliative care population data paper. These papers continue to be work in progress and will be developed further, with a view to using them as part of the evidence informing the strategy.

The population data paper now includes amendments requested by Public Health Scotland (PHS), clarification of difference between research and available service management information, plus some recently published research and policy reports. We still need to add population data for children and young people so are discussing this with PHS.

The Scottish Government are in the process of commissioning the Healthcare Improvement Scotland user experiences team to work with us. They will prioritise a palliative care project. Available options include a Gathering Views exercise with different community or other user groups using mixed methods and a consultation seeking comments from the well-established Citizen Panel, who might help with commenting on drafts of the strategy.  

The National Charities Group have previously submitted a paper on possible approaches to user experience work, and consideration will be given to how their views and those of other SSG-PC members and Reference groups will be fed into this process. It was also suggested that it may be useful to promote a peer evaluation approach to reach seldom heard groups. Members were invited to provide any further comments via email to the Scottish Government mailbox.

Strategy development - timeline and structure

The draft strategy structure, circulated in advance of the meeting, followed on from discussions at the last meeting. Work had been done to map the working groups to the core statements to show more clearly how the working groups will be contributing content to the overall strategy. 

Given the size of the steering group and scale of the work, members were asked if it would be better to arrange for us to have smaller discussion groups on key aspects of the strategy on 9 November, rather than hold a full SSG-PC meeting. This was welcomed, as it would allow time for more structured discussions, and it was proposed that SSG-PC members could suggest the areas for discussion and questions by emailing the Scottish Government mailbox. One suggested area for discussion was responsibility and accountability for implementation nationally and locally, and what the challenges might be. The discussions could be online with breakout groups, similar to the Look Back Look Forward format used previously. 

It was highlighted that consideration needs to be given to resources to implement the strategy, although the current financial pressures and challenges were acknowledged. However, comments were also made about the fact that this does not prevent a strategy setting out the evidence and what could be achieved, and balancing ambition with realistic affordability.      

A question was asked about whether the SSG-PC could be used more in between meetings, and suggestions were invited on how the group might do this or work better in other ways. It was highlighted that other reference groups, such as the charities group, could also be used to greater effect, and that it would be useful to have more time for discussion on the WGs during some of the SSG meetings, perhaps by providing reports in advance. Any further thoughts and suggestions were invited and can be sent in via the Scottish Government mailbox.