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Call for new strategy to improve end of life care in Scotland

16 May 2014

Marie Curie Cancer Care and the Scottish Partnership for Palliative Care (SPPC) are calling on the Scottish Government to act on recent promises to replace 'Living and Dying Well: a national action plan for palliative and end of life care in Scotland'.

It has been six years since the publication of Living and Dying Well, which set out a framework to support a person-centred approach to delivering consistently good palliative and end of life care on the basis of need, not diagnosis.

While the strategy has achieved a great deal, Marie Curie and SPPC say there are still challenges remaining.

Earlier this year more than 80 people with an interest in palliative care, including MSPs, gathered in Edinburgh to discuss its successes – the report of that conference has been published today, during Dying Matters Awareness Week, and confirms the urgent need for a broad reaching new framework for action.

In ‘Are We Living and Dying Well Yet?’ Marie Curie and the Scottish Partnership for Palliative Care set out steps to meet the challenge of improving experiences of death, dying and bereavement for the people of Scotland.

The recommendations are that a new strategic framework for action should:
  1. Be based on engagement with the Scottish public, patients and families, and on their needs, wishes, experiences and expectations.
  2. Encompass the needs of all age groups, diagnoses and individual circumstances.
  3. Address palliative and end of life care as a society-wide issue, adopting a public health/health promoting approach.
  4. Encompass not only the immediately obvious domains of health and social care but also other relevant fields such as education and communities.
  5. Be underpinned by the development of data, meaningful measures and relevant research activity.
  6. Encompass statutory, voluntary and independent sectors. 
  7. Apply knowledge of approaches proven to achieve and sustain change.
  8. Set out coherent and compelling approaches, including investment where necessary, to improve the areas of concern.

Increased demand

The report highlights the increased demand on health and social care services as more people are living into old age and dying with multiple conditions. However, the report argues that the challenge is even broader than the improvement of these traditional formal services, claiming that that there is a need to improve the wider experiences of death, dying and bereavement for the people of Scotland. This requires multiple collaborations and interactions within and across sectors, and shifts in public attitudes towards greater openness about death.

Richard Meade, Head of Policy and Public Affairs Scotland at Marie Curie, said: "The Scottish Government has achieved a great deal over the last six years, but it is clear that there are still challenges remaining. 

"A new framework for action will help us address the inequity of access to end of life care that those with a non-cancer diagnosis face. It can help us ensure that people get the care they need, in the way that they want, in a place they want to receive it.

"England has its survey of bereaved people, VOICES, but there’s no survey of this kind carried out in Scotland. This is a missed opportunity to inform future service planning, identify gaps and deficiencies in service delivery, as well as helping policy-makers understand to what extent care delivered is truly person-centred."

Kenny Steele, Chair of the Scottish Partnership for Palliative Care, said: "Every one of us will experience end of life care through our family and friends and eventually personally. It is not a minority issue but one that touches everyone in society. This is a topic which is not just a ‘health’ issue but is a wider societal issue and will need broad engagement to succeed. The development of a strategic framework for action will help to focus efforts to meet the challenges identified in today’s report."

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