Mid Dorset & North Poole MP, Vikki Slade, calls for 100% of Integrated Care Board grants to be passported to our Children’s Hospices

In a Westminster Hall debate, Vikki Slade highlighted the appalling state of funding for children’s hospices. 

Julia’s House children’s hospice, on the border of Broadstone and Corfe Mullen, is one of the lowest funded hospices in the country, receiving just 8% of its budget from the NHS. To compound that issue, those funding contracts have still not been agreed 7 months into the current year, leaving their finances in a precarious state.

The cost of end-of-life care is three times the usual per child cost and yet the last 6 weeks are unfunded.

Vikki commented ‘BCP council recently approved a Lib Dem motion calling for more funding for children’s hospices and  I was pleased to join colleagues from Dorset Council at the hospice this week as they bring forward the same motion.’

Urgent action is needed to secure the future of all children’s hospices as well as other charities that support young carers and siblings, and that is why Mid Dorset & North Poole MP, Vikki Slade, has made this call today.

After the debate, Vikki added ‘I was pleased that the minister offered reassurance about the continuation of  the children’s hospice grant, but I was frustrated that despite calls from all parties that this should go direct to the hospice, they are likely to continue funding through the Integrated Care Boards which is what is causing so much delay.”

The full text of Vikki's speech:

Thank you, it's a pleasure to serve under your Chairmanship and I'd like to thank the honourable member for bringing this debate.

Every time I meet a parent whose family is supported by a children's hospice, I'm immensely moved by their resilience. 

Like Gemma, whose three-year-old son, Finley, has been cared by Julia's House for over two years.  She wrote an incredible blog about parental mental health which you can find on the Julia's House website.  And in the debate about money, we should never forget that it's not only children whose lives that 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, those 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 like MYTIME young carers and Mosaic in Dorset, deserve our unwavering support, and they should not have to rely on charity shops and crazy challenges to make ends meet including this crazy MP who's agreed to do a crazy challenge for her children's hospice next year.

My local children's hospice Julia's House is just half mile from my home on the border

of Broadstone and Corfe Mullen and I've 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, but I had no idea that the support they provide for a child in the last six weeks of life is effectively unfunded.

We expect the NHS to fund the birth of our children, but we're relying on charity to fund care at a child's death and I find that shocking.

When I visited on Monday this week, I was greeted by a nurse clutching her mobile phone. She showed me the rooms that were prepared for family who were expected to arrive anytime as their child was approaching the end of their life.

The Mermaid Suite, which has been built to support a child's needs both before and after their death, was ready to welcome them.  But I heard that the nurses would need to be available around the clock, they would receive no funding from the NHS, despite this releasing intensive hospital beds.

The cost of end-of-life care was three times their usual per child funding because of the needs of the medication and support at the end of life, and the hospice would have to take this money from the respite, sibling support and regular care programmes to make sure that that family could be given the choice are entitled to under the NHS gold standard.

One family has been through this already is that of Annabelle with a genetically inherited condition, she 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 faced the agonizing prospect of losing Robbie to the same condition, where he is now receiving Julia's House Care. 

But it's not just Robbie, their other siblings are also receiving care and support through their 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 families like this if hospice services are cut back.

The hospice grant hasn't been confirmed beyond 2025, and this needs to be guaranteed into the long-term and cover every child that meets the threshold right up to the point of their death.

In Dorset we are seven months into the year and the contracts with the local health services have not yet been confirmed from NHS Dorset, NHS Wiltshire, Swindon and BANES, so I would like to ask that the minister write to the ICBs and insist that they passport 100% of those grants to our precious children's hospices and commit to putting our children's hospices on a sustainable future.

Thank you.