Scotland's public health palliative care alliance.

Abstract

People's experiences of death, dying and bereavement are only partially determined by formal health and social care services. A broad-based alliance of organisations and individuals was established in Scotland in 2011 with the aim of influencing a wider range of social, cultural and other environmental factors which impact on people's experiences towards the end of life. Called Good Life, Good Death, Good Grief (GLGDGG) this alliance has grown and developed over the past 6 years, with a current diverse membership of over 1,100. A small central resource hosted by the Scottish Partnership for Palliative Care (SPPC) provides infrastructure, resources, promotion, events and advocacy for the alliance. GLGDGG's approach is primarily to engage, support and enhance the assets of communities, organisations and individuals who have the potential to improve the experience of death, dying and bereavement in Scotland. In addition to having very limited financial and staff resources the alliance has faced and responded to some other major challenges; the breadth and diversity of areas needing action; a lack of evidence to inform prioritisation and advocacy; how to operationalise theory in specific contexts; risk aversion on the part of some institutions in relation to death, dying and bereavement; how to measure change and demonstrate impact. The alliance has developed or used different frameworks for conceptualising and organising its work, but always with an emphasis on practical and adaptable approaches to action. Key successes of GLGDGG include growth in the size and diversity of the membership and the development of a portfolio of resources, activities and events. Amongst events developed is To Absent Friends, a people' festival of storytelling and remembrance which gives people across Scotland an excuse to remember, to tell stories, to celebrate and to reminisce about people who have died but who remain important to them. GLGDGG promotes the festival, encourages involvement, provides ideas and support, and organises a small number of events. However, the vast majority of the activity which takes place during the festival is conceptualised and carried out by individuals and organisations on their own initiative. GLGDGG has been successful in influencing public policies relating to death, dying and bereavement. The experience of GLGDGG suggests that: enthusiasm for action exists widely in Scottish society; local ownership is the key for local action; national infrastructure and off-the-shelf resources are valued by local actors; small resource can make a big difference to local work; national events can act as a catalyst for local action. The next phase of work is to scale up existing activities and initiatives and to base future plans on scoping work currently being undertaken.