Children’s Hospices: Funding

James MacCleary Excerpts

Wednesday 30th October 2024 Westminster Hall

[James MacCleary (Lewes) (LD)]

I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing the debate.

As a parent myself, with two young children, I live in awe of the strength shown by parents of children with life-limiting conditions. It is incumbent on all of us to ensure that funding and support is there, so that those parents can enjoy those precious years that they will have with their children, those moments of joy that sometimes, perhaps, some of us take for granted with our own children. Such families face immense challenges, yet the support they receive varies drastically, depending on where they live. The postcode lottery they face is simply unacceptable.

Sussex, where my constituency is located, with its population of nearly 442,500 children, has an estimated 2,980 children living with life-limiting conditions. That means that approximately 67 out of every 10,000 children in Sussex require specialist palliative care. Those children and families deserve consistent, high-quality care but, sadly, that is not always the reality. A report from the campaign, Together for Short Lives, has revealed that Sussex is failing to meet its required standard for 24/7 end of life care at home. That means that families in Sussex are less likely to have access to around the clock nursing care and specialist advice when their child needs it most. It is hard to imagine the additional stress and heartbreak that that inflicts on families already coping with the unimaginable.

This situation is sadly not unique to Sussex. The report highlights the fact that only a third of local areas in England meet the required standards for 24/7 end of life care. That points to a systemic problem: a lack of funding, workforce shortages and a lack of accountability for delivering equitable care across the UK. I want to see a roadmap for change. Increased funding is essential to close the gap in NHS spending on children’s palliative care. We need more specialised nurses and paediatricians trained in this field. Most importantly, we need to hold our local NHS and local councils accountable for implementing existing policies, as mentioned by other Members, and ensuring that every child in Sussex and in the rest of the country, regardless of their postcode, has access to the care they need.

I hope we will see some good news in the Chancellor’s Budget statement later this morning to close the funding gap for children’s palliative care. This is not just about statistics; it is about real families facing real challenges. We must act now to end this postcode lottery. Children with life-limiting conditions deserve the best palliative care.