Dr Donald Macaskill provides an update on work on National Bereavement Standards, supporting care staff delivering palliative & end of life care #carehomecelebration19
Bereavement support is a basic human right
That might strike you as a bold assertion, but it is one which, I believe, is both defensible and essential to fulfil if we are to continue to grow as communities which care and support one another.
It is this belief that healthy bereavement support is not just a preferential option or desire but a fundamental human right which lies behind the work of a coalition of individuals and organisations who have been working over the last few months on the development of a Human Rights Charter for Bereavement in Scotland. In this blog I want to try and explain the background to this work and what it means for care homes and indeed the wider community.
First of all, why human rights?
Human rights are now the well-articulated basis for our understanding of the rights and responsibilities, the obligations and duties which lie at the heart of formal social care and health delivery in Scotland. In the care home sector workers and managers are working together to embed the new National Health and Care (human rights-based) Standards in the day to day delivery of care and support. Indeed, Scottish Care is delighted to be part of this work through the Rights Made Real project working with a group of care homes across Scotland in order to evidence the significance and potential of human rights in care delivery and support.
Human rights are not just positive aspirations and a ‘nice’ thing to have but rather they are the essential component which lie at the heart of all care and support. At times of particular challenge and uncertainty they are the bedrock to ensure continuation of rights and the retention of dignity and humanity.
In mid-June the First Minister appointed Shirley Anne Somerville, Cabinet Secretary for Social Security and Older People, and Professor Alan Miller of Strathclyde University to co-chair a National Taskforce for Human Rights Leadership. The announcement takes forward recommendations made in December 2018 by the First Minister’s Advisory Group on Human Rights Leadership. The taskforce will focus on the development of new legislation which would enhance the protection of the human rights of every member of Scottish society.
This taskforce will build on the desire expressed in December to seek to incorporate within any new Scottish law the obligations of the United Nations International Covenant on Economic, Social and Cultural Rights. Included amongst these rights is the right to health.
The right to health is the right to a universal minimum standard of health to which all individuals are entitled. What this means in practice has been long debated but there is now a mature conviction, not least in Scotland, that the right to health is not solely the right to physical and clinical health but to psychological, emotional and societal well-being. In that context there is a developing argument and belief that the right to both palliative and end of life care and to bereavement support are fundamental to and necessary for the achievement and fulfilment of the right to health. I intend to argue this more substantially in a future publication later this year.
For the meantime, it is my suggestion that healthy bereavement support should be seen as an intrinsic part of the human right to health and that this sits squarely within the desire in Scotland to fulfil the maximum potential of our economic, social and cultural rights and is part of what a universal minimum right to health should consist of.
To date there has been progress in fulfilling the aims of the 2015 Strategic Framework for Action on Palliative and End of Life Care but a lot less focus has been placed upon bereavement support since Shaping Bereavement Care: a framework for action, 2011 was published.
We know that there are real challenges facing people in dealing with bereavement and in finding the support that enables them as individuals, family members, workers and citizens to continue to live well and contribute to their communities. Scottish Care in its own research, not least The Trees that bend in the wind and the workforce groups which we have established on palliative and end of life care, knows that there is often a profoundly negative impact on staff wellbeing when bereavement is not adequately recognised and dealt with.
A recent report by Sue Ryder and Hospice UK Bereavement Support in Scotland identified a huge gap in the provision of bereavement support within Scotland. Following a national survey, they stated that:
‘nearly one third (31 per cent) of respondents say they needed additional support beyond family and friends to manage their bereavement. But:
Only 6 per cent of all respondents accessed bereavement support.
A further quarter (23 per cent) of respondents would have liked support but
couldn’t access it because: they didn’t know how (12 per cent); felt uncomfortable asking for it (8 per cent); or couldn’t get the type of support they wanted (3 per cent).’
They further argued that:
‘Based on the estimate that around 230,000 people in Scotland are bereaved each year, an estimated 53,000 people could be missing out on support that would help them cope with bereavement.’
Anyone working in a care home will recognise that dealing with frequent loss especially of those whom staff have developed and nurtured relationships with over a period of time, will inevitably impact upon the health and wellbeing of individuals. We recognise that after terms and conditions, one of the primary reasons for individuals leaving the care sector, is the struggle to cope with the emotional impact of caring, including bereavement when caring relationships end.
Given the growing evidence of the negative impact of bereavement, and not solely in care and health sectors, and given the changes that have happened since the Shaping Bereavement Care report a number of individuals felt that this is an appropriate time to develop a new Bereavement Charter that addresses and flexes to the evolving and varied process of bereavement in Scotland. Additionally, such a Charter has to recognise and address some of the variant factors around workforce attrition levels and acknowledge the impact of failings around bereavement on loneliness and social isolation, mental and physical health, financial and practical considerations, feelings and grief.
Who is involved?
A small, national multi-agency working group has met several times to begin to draft the content of the Charter (The principles of healthy bereavement: making Scotland the best country to live, die and grieve in). The group is now at the stage of finalising the principles of the Charter and is planning a series of consultation events across Scotland in autumn/winter 2019/20. It is hoped we will be able to launch the Charter in 2020.
I do hope that you would like to become involved. We will be consulting using social media, a web-based survey as well as through regional face to face events.
Scotland deserves to be amongst the first countries in the world to celebrate the reality that bereavement support is indeed a key part of the human right to health and that it is one which it is worth striving to achieve and fulfil.
If you would like to keep in touch or find out more contact us at [email protected]