Chestnut Tree House joins campaign to save Children’s Hospice Grant

On Tuesday 20 June, Anna Jones, Director of Children’s Services at Chestnut Tree House, joined representatives from children’s hospices across the country at Westminster to meet with MPs to discuss the Children’s Hospice Grant. Led by national charity Together for Short Lives, children’s hospices like Chestnut Tree House are calling on the Government and NHS England to ensure sustainable funding for the thousands of children and families who rely on them.


Tommy and his mum

Children like eight-year-old Tommy, who has a rare genetic condition called neurofibromatosis type 1, which causes tumours to grow along his nerves. The family are supported by Chestnut Tree House and Tommy loves hanging out at the hospice – playing video games or splashing about in the hydrotherapy pool, as well as receiving visits at home. This time allows his mum, Chelsea, to relax for a few hours, catch up on some sleep and spend time with her two younger children, and gives Tommy the opportunity to live life to the fullest, have fun and do all the things other children his age like to do.

Tommy is one of around 300 children currently cared for by Chestnut Tree House. And there are even more parents and family members who need support on their journey. Across the country, 54 children’s hospices rely on the centrally distributed Children’s Hospice Grant as well as the support of their local community.

Earlier this year, NHS England wrote to children’s hospices in England to let them know that the vital £25 million Children’s Hospice Grant will come to an end after this year (2023/24). New research from Together for Short Lives shows that without the continuation of the grant, 38% of children’s hospices in England would need to cut the end-of-life care they provide and 79% would be forced reduce respite breaks. This does not take into consideration the additional services that are at the heart of children’s hospice care, such as hydrotherapy, art, activity days and bereavement support.

Anna and Andy at Parliament

Explaining the urgency of the campaign, Andy Fletcher, Chief Executive of Together for Short Lives said: “Children’s hospices provide vital care to an ever-increasing number of seriously ill children and their families across the UK. If NHS England chooses to remove the 2024/25 grant, it will have a devastating impact on the lifeline hospice care they rely on.”

Even with the grant in place, Chestnut Tree House relies heavily on the generosity and support of the local community. For the year 2021/22, the grant only covered 15% of the hospice’s £4.3 million care costs. The remainder – around £10,000 per day – came from donations, fundraising, gifts in Wills, the hospice’s lottery and charity shops. But running costs have increased, as more nurses, healthcare assistants and activity coordinators are needed to provide the best quality of care to children with complex conditions.

Anna at Parliament

“We’re receiving more referrals than ever before and seeing more children with extremely complex medical needs,” explains Anna Jones, Director of Children’s Services at Chestnut Tree House.

“Some children require 2:1 care while they are staying with us, and it’s vital that we are able to support families when they need us. We also want to reach out to more families and offer them a range of activities and events. We’re really lucky to have a fantastic, highly skilled team at Chestnut, but are well aware that if the NHS England funding doesn’t continue beyond this year, it will put intense pressure on us and the services we’re able to provide.

“On top of this, there are additional financial pressures as energy costs have soared as well as other essentials like food. Electricity bills are up by 170%. Our local community have always been so generous, and we’re only here thanks to their donations and ongoing support. But we’re aware that many of them are struggling too, making fundraising more challenging.

“Alongside Together for Short Lives and my colleagues in children’s hospices across the country, I’m urging the Government and NHS England to continue the Children’s Hospice Grant so that we can continue to be there for the children and families who need us.”

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