Charities call for a new Scottish Government strategy to improve end of life care in Scotland

Marie Curie 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’s now been six years since the publication of Living and Dying Well in September 2008 and although progress has been made, challenges remain. Earlier this year over 80 people with an interest in palliative care including MSPs gathered in Edinburgh to discuss its successes and the report of that conference published today (15 May 2014), during Dying Matters Awareness Week, confirms the urgent need for a broad reaching new framework for action.

In ‘Are We Living and Dying Well Yet?’ published online at www.palliativecarescotland.org.uk authors Marie Curie and the Scottish Partnership for Palliative Care have 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:

     a. Delivering care which is better aligned to what people want – for example location of care and death.

     b. Raising public and professional knowledge and awareness of palliative and end of life care.

     c. Increasing openness about death, dying and bereavement and building individual and community resilience to deal with the hard times which can come with these experiences.

     d. Improving the identification of people who could benefit from palliative care, and their carers, and ensuring that they get the care and support they need.

     e. Ensuring consistently good care in the last days and hours of life in all settings.

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:
“We only have one chance to get end of life care right for people and this must be our ambition for everyone. 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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