Compassionate Cymru Wales: bold step towards better endings

by Lesley Bethell, steering group chair of Compassionate Cymru, Wales, UK  

Introduction

Compassionate communities have been seen as one element of public health approaches to end of life care, driven by concerns around scarce resource allocation in the face of unmet need.(1)  One of the drivers for shifting support towards public health here in Wales, is the ever increasing demand placed on statutory services as people reach the end of their lives, often in socially isolated circumstances with multiple co-morbidities at whatever age this might happen. Compassionate Cymru’s Charter and the Welsh Government’s ambitious project to make Wales the world’s first Compassionate Country can seem overwhelming in its scope. A cynic might even imagine it being adopted by politicians grasping at metaphorical straws, inspired by traditional, stereotypical images of Welsh communities of miners marching along streets of terraced houses singing hymns as they go! My colleague, Julian Abel, co-author of The Compassion Project (2, 3) recently described Compassionate Communities as an idea which requires very considered political input, but equally must not be stifled by it ( listen to his podcast with Libby Sallnow, November 2020). A multi-level approach, as often, is what is required: harnessing the community and its resourcefulness, to make palliative care so much better.

Background

Wales has established its own public facing resources with help from the ‘Dying Matters’ charity. This initiative was led by Hywel Francis (retired member of the UK Parliament) and was named  ‘Byw Nawr’, Welsh for ‘Live Now’. Areas of focus included better conversations at community level, advance and future care planning and support. Over time, a gradual evolution to principles of compassionate communities appeared to offer a logical progression to something more firmly rooted in community action for Wales. Byw Nawr is now Compassionate Cymru.

The challenges face by Wales are shared with those of other countries: restricted resources to fund end of life care via formal services, an ageing population and persisting health inequalities. We also have some advantages including a history of sometimes challenging the status quo. We have a lingering love for those aspects of community which have served many of us well, providing informal support for diverse efforts ranging across music and the arts, welcoming refugees, and sport. For instance, the Tredegar Band is just one example of many. There is a remaining political commitment to a more egalitarian society achieved via education, and to values tending towards inclusion rather than exclusion, however compromised they might seem on occasion.

Tredegar Band: an example of a multifaceted Compassionate Cymru approach

 

The potential offered by compassionate communities includes: putting at the centre a willingness to embrace and support the holistic nature of health and wellbeing especially at the end of life and in potentially challenging circumstances of depleted personal capacity and isolation; recognition of the enormous value of social connections and a commitment to invest in these; a commitment to support each other with basic but essential kindness when we are at our most vulnerable; to encourage community members to be brave enough to believe we all have something to offer our neighbours, relatives and friends when they face the end of their lives or find their capacities to make and sustain connections reduced for other reasons.

It is clear then, that those opportunities offered by a compassionate communities approach which might provide some relief from the intense pressure on formal services at the end of life and around bereavement, would fit well with some features of our ideas, scope and background and may not seem too novel as a political ambition.

The challenge

As Dr Julian Abel states, compassionate communities are about much more than how politicians may embrace a charter, or incorporate ideas into policy. We need then, to translate policy through strategic means to the level of service delivery, ie of individual experience.

At an individual, personal, level, compassionate communities recognise the holistic nature of health and well-being and that living and dying are essentially social processes, best supported, once needs for cure, symptom relief and physical care are met, with readily accessible social support and comfort.  The experiences of failure to find place based/local information, support and resources at the end of people’s lives have featured regularly in complaints and patient stories of personal lack and suffering and these are driving the desire for change. The recognition of the value of ordinary kindness and neighbourly support coupled with an active tradition of volunteering, across a whole range of activities related to end of life care and bereavement offers us enough encouragement to commit to the promise of Compassionate Cymru. Our aim is to take forward the project of identifying, supporting and synthesising what community help is available and sharing that information with everyone to answer the questions : Who needs help? What sort of help? Where can they find it? What can I do to help?

Politicians are charged with bringing together these two very different perspectives and attempting to deliver services accessible to all but distributed with a ‘top down’ starting point. Of course for individual members of society living painful, sometimes lonely lives, that starting point can feel remote, heartless, impersonal and unfair.

“This is the way” – our compassionate community pathway

In Wales the support for compassionate communities is an attempt to resolve some of these challenges by bridging those divergent perspectives. Compassionate communities embrace the values of personalised care delivered, supported and sustained by those with local, social, connections, in addition to those with professional links to community members. The value of social connectedness for wellbeing and enhanced health is well documented (e.g.”Social Isolation and Health”, Health Affairs Blog, June 22, 2020. https://www.healthaffairs.org/do/10.1377/hpb20200622.253235/full/ DOI: 10.1377/hblog20200622.750897.) The needs of and preferences for people to be cared for close to home has been highlighted by the pandemic, but the enormous challenges of providing this have been recognised for some time. Compassionate Communities aim to mobilise community populations at the street and neighbourhood level to complement formal services and ideally work in partnership with them, forming a flexible team which makes the most of medical and formal social care input by identifying and enabling community support in ways which genuinely address the question, ‘What matters most to you?’  when people face the most demanding times of their lives.

Somehow we have to link up the ‘bottom up’, street level, neighbourhood life of community practice, with the ideals handed down in the endorsement provided by the Charter. The enormous challenges to equality of access, privilege and quality of service experienced in hugely diverse communities, clearly described by Tudor Hart, remain pertinent and acute. (4)

The task we face as a group absolutely committed to the values of compassionate communities is enormous.  It is though, also, exhilarating, inspiring, and human, in its efforts, its failures and its willingness to keep on keeping on.  We are fortunate in having an End of Life Care Board which includes palliative care clinicians, researchers, government and third sector representatives, as well as patient and family representation and which is charged with implementing policy into practice. The Board has embraced the concept of compassionate communities, whilst at the same time struggling with all the restrictive bureaucracy and funding burdens that a Board which rests firmly in the NHS must grapple with.

This home base with its mix of actors has allowed some of us to learn about, discuss, and to reach out for help to established and successful enterprises based firmly in the values of compassionate communities. We have been given generous, ongoing, help and advice from those with invaluable experience. As a result we have a steering group with great representation from government, charitable and voluntary sectors, clinicians, patients and families working at a strategic level to translate the ideals of compassionate communities into action. We have secured some funding with Macmillan as partners, and some from government (never enough, but it is our starting point).

What matters most to you – next steps

Our real challenge comes now: the implementation and operationalising of the ideals and plans. The task of ensuring the answers to the questions:  Who needs help? What sort of help? Where can they find it?  What can I do to help?  can be combined meaningfully with individual, personal answers to the core of what we deliver which will be the responses to ‘What matters most to you?’. And it requires a map.

These challenges and the values of compassionate communities allow us to emphasise our humanity rather than our status or qualifications, and to work in partnership with those who are qualified to exercise their own humanity using skills which can offer cure or symptom relief. The offer is too good to resist for a country already committed to the ideals of prudent healthcare, values based care, co-production, as a means to manage the challenges of truly top-down and bottom up  policy making. Making a difference. Mapping the potential of the community.  We want it and we will make it work. Diolch (Welsh for ‘thank you”) for reading this, and I’m keen to hear from people anywhere in the world with useful insights and experiences!

References:

(1):  Compassionate Communities Approach   https://www.compassionate-communitiesuk.co.uk/compassionate-communities-uk-wales  (accessed 19/01/2021)

(2): Abel J,  Clarke L  Book: The Compassion Project: A case for hope & human kindness from the town that beat loneliness. Dr Julian Abel & Lindsay Clarke. Pub: Aster; 2020; London. ISBN 978-1-78325-336-4

(3): Abel J, Kingston H, Scally A, Hartnoll J, Hannam G T-MA, A. K. Reducing hospital admissions:a population health complex interventionof an enhanced model of primary care and compassionate communities. Br J Gen Pract. 2018;68:e803-e810.

(4) Hart J.T. The inverse care law. Lancet. 1971 Feb 27;1(7696):405-12. doi: 10.1016/s0140-6736(71)92410-x. PMID: 4100731.

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