One of the main things that shocked me when I started working in the children’s hospice sector three years ago was the lack of choice available to families. Particularly when it comes to end of life care for a child or young person, and the option to be at home. This isn’t because families don’t want that choice, but because, in too many places, the funding needed to support 24/7 palliative care at home simply isn’t there.
At Jessie May Children’s Hospice at Home, this is something we’ve been striving to change for many years. Providing 24/7 end of life support for children at home is the main objective in our No Place Like Home strategy as it is ultimately about listening to the voice of the child.
Thanks to a collaboration between several local palliative care providers including two children’s hospices, Children’s Hospice South West and Jessie May, this choice has been a reality for families in Bristol, North Somerset, and South Gloucestershire (BNSSG) over the past three years.
Since 2023, we’ve worked together on a pilot project, funded by NHS England and our local integrated care board (ICB), NHS BNSSG. This has meant working as a unified palliative care sector to give families genuine choice around end of life care, overcoming significant barriers such as data sharing, and ensuring consistent, safe clinical care. Through the collaboration of clinical teams, several families who wanted their child to be at home at the end of life have been supported to do just that.
Sadly, however, we are once again facing the reality that this choice will no longer be available simply because of the lack of properly planned and sustained health funding. Once again, a child’s chance to access end of life care at home risks becoming dependent on where they live. We had hoped this pilot would be a trailblazer, demonstrating how this model could be scaled and replicated across the country. Instead, its future, and the choice it offers to families, is now uncertain.
What’s particularly frustrating is the missed opportunity and the lack of willingness from commissioners to truly engage with the meaningful data we’ve gathered. This model doesn’t just benefit families; it also reduces pressure on the NHS. Yet despite the mounting evidence, the drive to cut costs continues to take priority over creating a meaningful, compassionate and sustainable palliative care pathway for children.
As a children’s hospice-at-home provider, we will continue to champion the importance of 24/7 end of life care at home. We will keep working with other palliative care providers to support choice for families. But for this to be sustainable, we need long term, properly funded commitments from our health partners.
We still believe that together, we can build a system that lasts, one that puts children, young people, and their families at the centre, and honours their right to choose.
The care and support a seriously ill child receives should never depend on where they live. Help us drive change and ensure that services like Jessie May’s are properly funded to provide lifeline care to seriously ill children and their families, 24 hours a day, 7 days a week.
