Better Dying Fund Building and accelerating a better palliative and end-of-life care system that works for everyone
Our end-of-life care system in the UK was built for a different experience of death and dying. The Better Dying Fund will use philanthropic money to help shift the way communities and organisations support people and families, and meet the challenges of today, and tomorrow.The ways we die have changed faster than the systems built to care for us
The patterns are clear for people caring for people coming to the end of their lives. Dementia and frailty have displaced the rapid decline from cancer that the hospice movement was built around. The final phase of life can now last years. Care homes are on track to become the most common place of death by 2040, yet they have no duty to provide end-of-life care. By then roughly 150,000 more people will need palliative care than do today. Meanwhile care in the community is getting harder, with district nursing numbers having fallen 43% since 2009.
Good care is in many places. It just isn’t widespread
Hospice-at-home teams, community nurses, care home staff, end-of-life doulas and compassionate neighbours are doing remarkable work up and down the country. Despite incredibly challenging conditions, the field is full of energy for change. But we have heard the same thing again and again: people hit a ceiling. Innovations can’t scale beyond the place that built them because the conditions aren’t right elsewhere, and the people who kickstarted them have to move on to the next funding bid, whilst the wider staff get back to their busy workloads.
It is difficult to get good work to grow long-term
New approaches run out of grant money before they can produce the evidence that would justify keeping them. The benefits of improved care in one part of the system often land in someone else’s budget, so no one has a reason to pay for it. The information that would let care follow a person from home to hospice to hospital to care home is largely missing. Every organisation can improve its own part, but no organisation is set up to fix the joins.
There is real generosity, but almost none of it is aimed at changing how the system works
Over the past ten years, major charitable foundations have given about £92m to end-of-life care for adults, spread across 3,500 separate grants, and most of that has gone on keeping existing services running. That support matters, but it means charitable money has mostly been used to prop up today’s system rather than improve it. Philanthropy has freedoms that public money lacks. It can pay for work that crosses the boundaries between hospices, hospitals, care homes and local communities. It can stay involved for the years it takes to find out whether something works. And it can be set up from the start to hand over to others once it does. Used that way, a relatively small amount of money can change far more than its size suggests.
The Better Dying Fund
We are working with philanthropic donors to bring new resources into end-of-life care: a different kind of capital designed to accelerate what already works, build new approaches, and build the shared capabilities no single organisation can.
We’ve started with a major report that maps where the system is stuck and identifies five places where we believe this money can make the biggest difference.
The fund is being built by ZIP, an innovation agency with a track record of building ventures to enable healthy ageing and support the care system. We’re working in partnership with Purposeful Ventures, a major charity that backs social entrepreneurs, and Ivor Williams, end-of-life care designer and former Lead for End-of-Life Care at Imperial College London.
Read the report →
Help shape what comes next
Our report is the beginning of a process to co-design the investments the Better Dying Fund will make. Over the coming months we are bringing together funders, practitioners and the wider public to test these ideas and decide what to back first. Register your interest to follow the work and find out how to take part.