Children’s Hospices: Funding

Vikki Slade Excerpts

Wednesday 30th October 2024 Westminster Hall

[Vikki Slade (Mid Dorset and North Poole) (LD)]

It is a pleasure to serve under your chairmanship, Mr Twigg. I thank the hon. Member for Liverpool West Derby (Ian Byrne) for securing this debate. Every time I meet a parent whose family is supported by a children’s hospice, I am immensely moved by their resilience. Gemma, whose three-year-old son Finlay has been cared for by Julia’s House for more than two years, wrote an incredible blog about parental mental health, which can be found on the Julia’s House website. In the debate about money, we should never forget that there are not only children whose lives will be shortened, but parents whose capacity to follow their careers and support their wider family is curtailed and siblings whose childhoods will look very different—so-called glass children, who look strong on the outside but are so fragile they could smash to a thousand pieces.

Children’s hospices and other charities that support young carers and siblings, such as MYTIME Young Carers and Mosaic in Dorset, deserve our unwavering support. They should not have to rely on charity shops and crazy challenges to make ends meet—although this crazy MP has agreed to do a crazy challenge for her children’s hospice next year. My local children’s hospice, Julia’s House, is just half a mile from my home on the border of Broadstone and Corfe Mullen and I have visited numerous times since it opened 20 years ago. It has one of the lowest public funding streams across the hospice sector, with only 8% of its funding coming from the NHS. I had no idea that the support it provides for a child in the last six weeks of life is effectively unfunded. I find it shocking that we expect the NHS to fund the birth of our children, but we are relying on charity to fund care at a child’s death.

When I visited Julia’s House on Monday, I was greeted by a nurse clutching her mobile phone. She showed me the rooms that were prepared for a family who were expected to arrive at any time because their child was approaching the end of their life. The mermaid suite, which was built to support a child’s needs both before and after their death, was ready to welcome them. However, I heard that the nurses would need to be available around the clock and would receive no funding from the NHS, despite the fact that hospice care releases intensive care hospital beds. The cost of end of life care was three times the hospice’s usual per-child funding because of the medication and end of life support. The hospice would have to take that money from the respite, sibling support and regular care programmes to make sure that the family could be given the choice they are entitled to under the NHS gold standard.

Annabelle’s family have been through that already. Annabelle had a genetically inherited condition and was a frequent visitor to Julia’s House, where she enjoyed respite stays, made friends, joined the hospice choir and even got to meet a member of her favourite pop band, the Vamps. She passed away earlier this year at the age of just 18, and her family now face the agonising prospect of losing Robbie to the same condition. He is now receiving care at Julia’s House. But it is not just Robbie; another sibling is also receiving care and support through counselling, and both parents benefit from the respite breaks that will ultimately give them a chance of staying together. I dread to think what will happen to such families if hospice services are cut back.

The hospice grant has not been confirmed beyond 2025. It needs to be guaranteed in the long term and cover every child that meets the threshold, right up to the point of their death. In Dorset, seven months into the financial year, the contracts with local health services have not yet been confirmed by NHS Dorset and NHS Bath and North East Somerset, Swindon and Wiltshire. I ask the Minister to write to the ICBs and insist that they passport 100% of the grant to our precious children’s hospices and commit to a sustainable future for our children’s hospices.