Palliative and end of life care: Strategy Steering Group minutes – September 2022

Attendees and apologies

Groups/organisations represented:

• Care Inspectorate
• Children’s Hospices Across Scotland (CHAS)
• Healthcare Improvement Scotland (HIS)
• Marie Curie
• Medical Directors Group
• NHS Borders
• NHS Dumfries and Galloway
• Paediatric End of Life Care Network (PELiCaN)
• Palliative Care Guidelines Group
• Scottish Care
• Scottish Government
• Scottish Network for Acute Palliative Care (SNAPC)
• Scottish Partnership for Palliative Care
• Scottish Social Services Council (SSSC)
• University of Glasgow

 

Apologies received from:

• Carers Scotland
• Faith in Older People
• King’s College London - Paediatric Palliative Care

Items and actions

Welcome and introductions

The Chair invited everyone to introduce themselves and to summarise the biggest change they would like to see as a result of the strategy.  Responses included:

• a focus on acute care and re-establish role of hospitals to serve community and the whole system, including hospitals as part of the solution; equip hospitals to do better
• care being delivered informally and across settings wherever the person wants and needs it to be
• clear understanding of what people experience across the system as they approach the end of life; understand where we are at; strengthen focus and accountability
• hospital paediatric care as a speciality equal to other paediatric sub-specialities; synergies and coalition with third sector partners, including CHAS
• clear pathways for rural boards that don’t have everything on the doorstep and supporting the preferred place of care and death
• Scottish Palliative Care Guidelines fully embedded and resourced with educational and digital support
• standard of bereavement within scope; recognition of social care settings as part of primary care; recognition of workforce as resourced, trained and valued
• ensure 33,000 people in care homes needs are valued and supported and they can access same primary and hospital care when needed
• increase understanding of bereavement and how it impacts loved ones after death
• broaden out beyond clinical; recognise and include third sector
• children have longer term palliative care needs, not just end of life
• choice and control for families; hospice care integrated with health and social care
• sense of direction – where are we now and where are we headed, “Once for Scotland” approach, equitable access
• research network resourced to improve research for palliative care and bereavement
• social work and social care workforce represented and valued
• easy and timely access to general and specialist palliative and end of life care no matter where people live and including human rights of people
• everyone knows how to help someone who is dying or grieving as part of everyday life
• look beyond specialisms and build sustainability, recognition and acknowledgement of non-statutory contribution of hospice sector

The chair outlined the proposed title and scope to deliver on the SG commitment to develop and publish a new national strategy for palliative and end of life care.

Developing a strategy for palliative and end of life care

Leadership and Governance Structures and Membership (paper 1)

The chair outlined the membership, remit and role of Steering Group and asked for comments on the remit, which included: 

• ask to consider breadth of scope
• ask for care setting to be changed to all places to include peoples own homes, as well as thinking about work in schools and workplaces
• key role to make links and overlaps with other strategies

The chair outlined the membership of group and asked for any further suggestions.

It was also noted that there would be an internal steering group of clinical and policy leads to ensure alignment with relevant programmes, strategies and policies.

Aims, principles and structure (Paper 2)         

Aims

Comments included:

• make specific reference to reduce inequity and inequality and to planning ahead

Principles

Comments included:

• how do human rights inform decision making
• reference multi-disciplinary and multi-agency approach, including volunteers
• human rights principles may be insufficient; discussion around palliative care as a human right; access to palliative care in recent English Health and Social Care legislation
• need an explicit commitment to addressing the inequality gap, especially post-pandemic
• reference care and support
• use bereavement, not grieving; dying and bereavement
• reference equal access and address how people can get the care they need across Scotland

Structure and priorities

Comments included:

• evaluate implementation, make sure work is purposeful and useful and assessed
• understand responsibilities at every level; translation of national framework at every level; accountability at every level
• integration / transition for paediatrics to adult care
• everybody’s business - communities, public health approach

Approach to development and delivery

Comments included:

• game changing to land support for implementation and evaluate impact; how to get traction and operationalise
• build and sustain the workforce for safe staffing and fair pay, especially in social care
• need an economic evaluation of the strategy – what is required to make it work and affordable – need costings
• need to address experience of previous framework – how to look forward and how to look back and discussion on need to reflect further on this
• successful implementation of complex change across multiple domains, e.g. social security
• need ongoing workstreams and work programme, with a commitment to future support
• need to combine optimism and realism
• consider different ways to involve the public
• improve monitoring and evaluation and build this in early
• use HIS organisational development and cultural change

Actions:

• consider a facilitated meeting (ideally in-person) to review previous two strategies and learn lessons applicable to this new strategy
• Review and update ‘paper 2: aims, principles and structure’ to take account of comments/ feedback from SSG-PC members.

Future meetings

Next meeting - 8 December 2022 (2-4pm)

The next meeting will focus on background data, information and evidence