About the Scottish Partnership for Palliative Care

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Full Members of SPPC (February 2017)

This strategy has been developed by the SPPC Council together with SPPC members and other stakeholders between October 2016 and March 2017.

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About the Scottish Partnership for Palliative Care

Ill health, death and bereavement affect everyone deeply and profoundly at some point in their lives. When faced with the reality of deteriorating health and death, people may need many things from the NHS, from social care services,from other formal services, and from their friends, families and communities.

The Scottish Partnership for Palliative Care (SPPC)brings together health and social care professionals from hospitals, social care services, primary care, hospices and other charities, to find ways of improving people’s experiences of declining health, death, dying and bereavement. We also work to enable communities and individuals to support each other through the hard times which can come with death, dying and bereavement.

Sometimes our field is described as “palliative care” but depending on what people understand by this term, this language can cause confusion. One way of thinking about “palliative care” is to talk in terms of providing “good care” to people whose health is in irreversible decline or whose lives are coming to an inevitable close. However, the work of the SPPC isnot synonymous with death – it is about life, about the care of someone who is alive, someone who still has hours, days, months, or years remaining in their life, and about optimising wellbeing in those circumstances.

SPPC was founded 26 years ago and has grown to be a collaboration of over 50 organisations involved in providing care towards the end of life. SPPC’s membership includes all the territorial NHS Boards, all the hospices, a range of professional associations,many national charities, local authorities, social care providers and universities.

SPPC members recognise the importance of an effective cross sector, multi-professional network, and because they value this collaborative approach they are prepared to contribute expertise, perspectives, time, energy and money to make ourwork possible.

A recent survey of stakeholders confirmed that they value our independence, impartiality, expertise and advocacy, our breadth and reach, and our ability to join up often complex agendas and facilitate collaboration.

Our Mission

SPPC exists in order to improve people’s experiences of living with declining health, death, dying and bereavement in Scotland.

Our Vision

People, regardless of age, diagnosis, characteristics or circumstance should experience safe, effective, person-centred care from health and social care staff who understand that they can continue to make a significant difference to a person’s wellbeing even in the last months, weeks, days and hours of that person’s life. Our vision is that Scotland will be a place where:

• People’s wellbeing is supported even as their health declines;
• People die well;
• People are supported throughout bereavement;
• Communities and individuals are able to help each other through the hard timeswhich can come with declining health, death,dying, and bereavement.

This vision can only be achieved through co-production by formal services, individuals and communities.

The Context – Death, Dying & Bereavement in Scotland

Around 56,000 people die annually in Scotland. Of these it is estimated that as many as 46,000 people will have needs arising from living with deteriorating health for years, months or weeks before they die.

Death in hospitals:29% of all acute bed days are used by patients in their last year of life. Nearly 1 in 10 of patients in hospital will die during their current admission and 54% of deaths take place in hospital.

Death in care homes:33 000 older people live in a care home, their median length of stay is less than 18 months, over 60% have dementia and over 11 000 die each year.

Death in homes:In 2013 63 000 people aged over 65 received care at home services.

Babies, children and young people: There are growing numbers of babies, children and young people living with life limiting conditions.

Health and care expenditure rises sharply towards the end of life.

Despite being both universal and profound, the experiences of death, dying and bereavement have some of the characteristics of marginal issues in Scottish society. There are low levels of public and professional awareness, knowledge, discourse and engagement relating to these issues. There is also a lack of good data on the scope and performance of formal and informal services, on the cost-effectiveness of service models and on the experiences of people in the final phases of life and bereavement.

High quality care towards the end of life – delivered in a range of settings - can reduce unscheduled hospital bed days; reduce overtreatment; support patients and families in the community; promote person-centred care, shared decision making and the achievement of personal outcomes; and supportwellbeing during whatever time remains to an individual and their family.

Improvements in this area thereforehavea key role to play in addressing the quality, safety and resource challenges facing Integrated Joint Boards (IJBs). SPPC can play a key role insupportingIJBs to address these challenges, in the context of Scottish Government commitments to “reduce unscheduled bed-days in hospital care by up to 10%” and “doubling the palliative and end of life provision in the community.”[1]

SPPC Progress and Achievements

Despite real terms reductions in our income SPPC has continued to deliver functions and products which are valued by the sector. In a recent survey we asked members and other stakeholders to rate each SPPC function and activity. On average each area was rated as valuable or very valuable by well over 90% of respondents. Stakeholders told us that they particularly valued SPPC’s role in:

• Advocating the importance of palliative and end of life care
• Keeping them informed about policy and practice
• Enabling them to inform government policy and guidance
• Facilitating networks/connections across the sector
• Identifying and spreading good practice
• Raising public awareness and understanding of good care towards the end of life
• Managing projects to implement improvements in palliative care

Products delivered by and through the SPPC in recent years include:

• A monthly ebulletin providing a digest ofrelevant policy, practice, research and other news to around 3000 inboxes each month.
• The Scottish Palliative Care Guidelines which received 146 000 hits in 2016 (
• Establishment and facilitation of the Good Life, Good Death, Good Grief alliance ( which provides practical resources and promotes advance planning and supportivebehaviours around death, dying and loss.
• Initiation of the annual To Absent Friends festival ( which tackles isolation linked to bereavement.
• Highly rated annual conferences.
• Facilitation of annual Death Awareness Weeks, supporting individuals and organisations to identify and address local issues.
• Developing content for key policy documents including Guidance on Caring for People in the Last Days and Hours of Life, Standards of Care for Older People in Hospitaland the Scottish Public Health Network report on public health approaches to pallative care. During the development of Scottish Government’sStrategic Framework for Action on Palliative and End of Life Care SPPC made an expert consensus view availabe to the authors.
  

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SPPC’s Strategy Map

Strategic Priorities Strategic Objectives

Over the next 3 years we aim to:

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Measuring Success

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Our strategic objectives are interrelated and mutually supportive. Taken together they will contribute to the achievement of our vision, by:

•Increasing the positive impact of organisations and practitioners

•Realising the benefits of collaboration across the sector

•Changing the cultures, attitudes and behaviours which underlieinformal community and professional responses to death, dying and bereavement

This strategy will be underpinned by annual plansdetailing activities and outputs structured around the strategic objectives identified above.

Resource Assumptions

Historically SPPC’s funding comes from a mix of statutory and charitable sources. The income is a mix of subscriptions from our membership, grants for core costs, and grants for specific projects. The chart below shows the mix for 2016-17.

Over the period of this strategy all our existing funders will be experiencing severe financial pressures, with associated risks to SPPC’s funding. It will remain vital for SPPC to understand and deliver activities which constitute value to our funders.

Our strategy is based on retaininga similar size of membership base, and retaining our existing core funding. We believe that we can secure additional funding from new charitable trusts to support our strategic objective of promotingopen and supportive attitudes and behaviours.

Appendix 1 – what are palliative and end of life care?

Though more specific definitions can be helpful, one way of thinking about “palliative care” is to talk in terms of providing ‘good care’ to people whose health is in irreversible decline or whose lives are coming to an inevitable close. Perhaps what differentiates ‘palliative care’ from ‘just good care’ is the awareness that a person’s mortality has started to influence clinical and/or personal decision-making. However, palliative care is not synonymous with death – it is about life, about the care of someone who is alive, someone who still has hours, days, months, or years remaining in their life, and about optimising wellbeing in those circumstances.

Therefore, in Scotland, much of the care that people receive when their health is deteriorating could be termed generalist palliative care, being provided by health and social care staff to people living in the community, in care homes and in hospitals. It is palliative care regardless of whether someone has cancer, organ failure (including neurological conditions) or ‘old age’, or whether they are living at home, in a hospice, in a care home or in a medical ward, ICU or neonatal ward. Palliative care can and should be delivered alongside active treatment where that is appropriate.

Specialist palliative care can help people with more complex palliative care needs and is provided by specially trained multi-professional specialist palliative care teams who are generally based in a hospice, an NHS specialist palliative care unit or an acute hospital, but whose expertise should be accessible from any care setting and at any time.

Palliative care includes, but is not exclusively about, end of life care. End of life care is that part of palliative care which should follow from the diagnosis of a patient entering the process of dying, whether or not he or she is already in receipt of palliative care. This phase could vary between months, weeks, days or hours in the context of different disease trajectories. There can be uncertainty involved in identifying when someone might be expected to die – illness can be unpredictable, and changes can occur suddenly and unexpectedly.

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[1] Health and Social Care Delivery Plan (December 2016, Scottish Government)