Open letter to the Prime Minister: End-of-Life Social Care
The Rt Hon Andy Burnham MP and Baroness Casey
Prime Minister
10 Downing Street
London SW1A 2AA
1st September 2026
Dear Prime Minister and Lady Casey
As Chief Executive of End of Life Doula UK (EoLDUK), I welcomed your renewed focus on transforming social care and the launch of the Big Conversation on Care.
We particularly welcome the Prime Minister’s recognition that integration with the NHS must not lead to the over-medicalisation of social care. At the heart of our work is the knowledge that dying is not solely, or even primarily, a medical event. It is a social experience with a medical component, affecting the person, their family, friends, unpaid carers and wider community. Research led by our Ambassador, Professor Allan Kellehear, highlights that people may spend as little as 5% of their time at the end-of-life in contact with health and care professionals. For the remaining 95%, they draw on support from family, friends, neighbours, faith groups and wider community networks. Yet our current systems too often respond to dying mainly through healthcare services, while the practical, emotional, social and spiritual dimensions remain fragmented or unsupported.
EoLDUK is the national membership association charity for end of life doulas in the UK. End of life doulas do not replace families, friends, communities or professional services; they help those people and services work together more effectively, building ‘community caring capacity’ by offering time, relationship continuity, preparation, and practical guidance. We agree that this is a “moment of reckoning” for social care. That reckoning must include recognising that most end-of-life care already takes place outside formal services. This is not a failure of those services. It reflects the fact that many of a person’s priorities towards the end-of-life are not about services at all, but about belonging, legacy, continued purpose and connection to community. We want to see an ambitious, creative and fit-for-purpose health and social care system that recognises and supports this wider reality of care.
We believe that we will not get end-of-life care right while it continues to be conflated with hospice and specialist palliative care. These essential services need sufficient funding, but they are only one part of the wider support people may need towards the end-of-life, and many people do not or cannot access them. Focusing end-of-life funding primarily on these specialist services risks widening existing inequalities.
If care is to move from hospitals into communities, investment must also recognise, prepare, and support those communities, strengthening their capacity to care, reducing isolation and enabling earlier conversations about dying. Strengthening community caring capacity can also help share the demands of caring more widely and reduce avoidable pressure on unpaid carers, who too often carry significant responsibility without sufficient recognition, information, or support.
Access to end-of-life support should not depend on a person’s income, postcode, diagnosis, circumstances or background. To achieve this, we must not only make specialist services more accessible but recognise that most care will continue to take place outside them, within and provided by communities, and ensure those communities are properly resourced.
This is also an opportunity to move from a system that intervenes primarily at points of crisis to one that helps people prepare, in line with the NHS 10 Year Plan focus on prevention. Earlier conversations, accessible information, continuity of support and stronger community networks can improve peoples’ experiences while reducing avoidable pressure on ambulance services, emergency departments, hospitals, and formal social care.
EoLDUK’s commissioned work with NHS partners demonstrates the benefits of this approach. In Leeds, only 13% of people supported experienced an unplanned hospital admission during their final 90 days, compared with a local baseline of 61–62%, and 85% died in their preferred place. In South West London, none of the people we supported experienced an unplanned hospital admission, while 92% died in their preferred place of care (usually their home). This data was strengthened by case study examples demonstrating how supporting, resourcing, and strengthening a person’s circle of support in their community directly contributed to fewer crisis admissions.
With a national network of approaching 500 members, EoLDUK brings together practical experience from diverse communities across the UK with evidence from services commissioned by NHS partners. Our members understand where people and families struggle to navigate existing provision, but also what enables communities to respond effectively and reduce pressure on formal systems when they are given the right knowledge, confidence, and support. This combination of national reach, community-rooted insight, and experience of working collaboratively with formal services places us in a strong position to help shape and test social care models that are preventative, locally responsive, and genuinely centred on people’s lives.
We are also well-placed to contribute directly to the Big Conversation on Care. Our members and the community networks with which they are connected offer a route to people whose experiences and perspectives may not otherwise be heard through a national consultation. We would welcome the opportunity to work with the Commission to support meaningful conversations about what people need and expect from social care towards the end-of-life, and to help bring those insights into the reform process.
We would therefore welcome:
explicit recognition and resourcing within the Commission’s recommendations and the National Care Service of community-led end-of-life care and support provided through families, friends, neighbours, faith groups and wider community networks;
EoLDUK’s inclusion in relevant policy discussions, advisory groups and implementation work concerning end-of-life and the shift from hospital to community;
the opportunity for EoLDUK and its national membership to act as a connecting partner for the Big Conversation on Care, helping the Commission engage with people and communities whose voices may otherwise be missed; and
the opportunity to work with the Commission to explore how community-led models of end-of-life support can be developed, tested, sustainably resourced and connected with local health and social care systems.
We would welcome a meeting with Baroness Casey’s Commission team and relevant government officials to share our evidence and discuss how EoLDUK’s national network and experience of NHS-commissioned services could contribute to this work. We would be grateful for a named point of contact with whom we can take this forward.
Yours sincerely,
Dr Emma Clare PhD CPsychol
Chief Executive, End of Life Doula UK https://eol-doula.uk
Vice Chair, National End of Life Care Coalition