Jessie May Needs You: Why We Must Protect Choice in Children's Palliative Care
Behind every child we care for is a family whose world has changed forever. That’s who we’re here for.
This year, Jessie May marks 30 years of delivering children’s palliative care at home. For three decades, our nurses have provided expert care in the place where children feel safest, their own home, surrounded by the people and things they love.
Our work is built on trust, compassion, and one very powerful principle: choice.
When families face the unimaginable, they deserve the freedom to choose how, when, and where their child receives care. Jessie May gives them that freedom. We are there in the joyful moments, and we are there in the darkest ones, offering vital clinical care and emotional support, all within the security of home.
A Crisis Hidden in Plain Sight
Children’s hospice-at-home services remain non-commissioned, treated as a ‘nice to have’ rather than the essential, specialist service we know it is.
We are incredibly grateful for the support we receive through both the Children’s Hospice Grant and our local Integrated Care Board (ICB). But together, they cover just 20% of the cost of our care. The remaining 80% must be raised through donations and charitable fundraising, every single year.
The past four years have seen the cost of delivering care rise sharply, and despite the amazing support of our local community, we are facing a £300,000 funding gap this year.
Without long-term commitment or sustainable commissioning, we cannot plan ahead with confidence. We cannot expand to meet rising demand. We cannot protect this care for the future.
Aligning With the NHS Vision, But Left Out of the Plan?
Right now, the government is shaping its 10-year plan for the NHS, and at its heart are values we strongly uphold:
- More choice for patients
- Greater emphasis on community-based care
- Reducing unplanned hospital admissions
This is exactly what Jessie May has been doing for 30 years. We are already delivering the care system of the future; personalised, community-led and responsive. We are proud to provide this care in Bristol and the surrounding areas, and we would be honoured to share our model across the UK. But we can only do this if we’re still here.
The Reality for our Families
When I speak to the families we support, one message comes through loud and clear: Jessie May is not a luxury. It is a lifeline.
We give families peace of mind, time together, and choices they didn’t know they had. We allow children to live -and die – in comfort, at home, with dignity. That should never be optional. I am acutely aware it should never depend on how successful a charity appeal is in any given year.
And yet, as a charity, we are asking for support at a time when giving is harder than ever. People are being careful with every penny. Charities are being more closely scrutinised, as they should be. But the need is urgent and the risk of doing nothing is too great.
JESSIE MAY NEEDS YOU
For families facing the most painful journeys imaginable, the stakes couldn’t be higher and we need your help. At a time when charitable giving is increasingly challenging, we must ask for your support to help fill our current gap and secure sustainability for the future.
We want to preserve choice, compassion, and community in palliative care, not just in policy, but in practice. We must act now.
Jessie May needs you to stand with us, speak up for what matters, and help us continue to be there for the families who need us most.
