Children’s Hospices: Funding

Alison Bennett Excerpts

Wednesday 30th October 2024 Westminster Hall

[Alison Bennett (Mid Sussex) (LD)]

It is a pleasure to serve under your chairmanship, Mr Twigg.

I begin by thanking the hon. Member for Liverpool West Derby (Ian Byrne) for securing this really important and timely debate. I also pay credit to his efforts and the efforts of the good people of Liverpool for all the work they have done to save—hopefully—Zoe’s Place. However, the fact that all those efforts, including the trombone-playing, have been required means that today we are not where we should be. Based on the contributions across the Chamber this morning, there is widespread agreement among Members that this total dependence of children’s hospices on fundraising—putting out the begging bowl to keep them going—is unacceptable and something that we would like to see change.

In Mid Sussex, where I live, I know somebody called Carey who I first met in 2019. I went to his house for a cup of tea and he pointed to a photograph on the wall and said, “Just so you know, this is my son Fred, and Fred died when he was a teenager.” Roll on to 2024, and Carey and I are no longer fellow constituents—he now lives just outside Mid Sussex—but we are both served by the wonderful Chestnut Tree House Children’s Hospice in Arundel, which serves families right across west Sussex.

Chestnut Tree House did an incredible job for Carey, Fred and the whole of their family as Fred approached the end of his life. Carey said he is certain of the fact that

“without the support of Chestnut Tree House for our lovely Fred, and for us as we helped him, on his journey from lively teenager to death, we would all have been broken beyond endurance”.

What Chestnut Tree House did for Carey was to make his and his family’s most difficult years as bearable and as happy as they could be. Every child whose years are shortened and every family involved deserves such support. I fear that unless the Government take decisive action, such vital support services will continue to wither, and children like Fred and family members like Carey will be left to fend for themselves in truly dark times.

This is not an issue to be addressed at a later date, but one that has consequences for children and families throughout the country today. The challenges faced by children’s hospices are daunting. Each year hospices across the UK provide vital services to around 300,000 people, including approximately 7,500 children with life-limiting or life-threatening conditions. That is why we Liberal Democrats firmly believe in the necessity of a fair funding deal for hospices. It is time to address the inconsistencies that Members have spoken about in children’s palliative care funding, and ensure that all hospices are properly resourced to meet even the most basic NHS standards.

Charities such as Together for Short Lives have identified systemic problems that stop children getting the care they need. With the large majority of funding being private or charitable, the sector is precariously poised. Although the increase in the children and young people’s hospice grant to £25 million is a positive step, I am sad to say that it falls woefully short of the £295 million gap in NHS spending on children’s palliative care identified by charities such as Together for Short Lives.

A staggering two thirds of local areas in England fail to meet the required standard for 24/7 end of life care for children at home. Alarmingly, only 14% of integrated care boards—just six in total—currently fund services that provide round-the-clock access to children’s nursing care and specialist paediatric palliative care consultations.

The postcode lottery is very real. In 2022, NHS funding for children’s hospices varied dramatically. Areas such as Norfolk and Waveney allocated £511 per patient; others, such as South Yorkshire, provided a mere £28. This disparity is totally unfair. It leads to unequal access to essential services, including therapies like physiotherapy, which can make a genuinely life-changing difference for so many children. These are not just statistics: they translate into real-life consequences for families who need and deserve every bit of support they can get.

Meanwhile, rising costs have not been matched by appropriate funding increases, and the lack of transparency in funding and services is concerning. Freedom of information requests revealed that only 31% of integrated care boards could confirm how many children with life-limiting conditions accessed hospice care in their area, while 14% could not even report on their spending in this critical area. This is unacceptable. We must have a clear understanding of the needs in our communities to ensure that no child is left behind. We cannot allow our most vulnerable children and their families to be at the mercy of a fragmented and inadequate system.

We have a moral obligation to act. Together we can create a future in which every child, regardless of their circumstances, or where they live, receives the best possible palliative care. That can happen when, first, the Government fix the postcode lottery; secondly, they review the declining charitable incomes of hospices and the links to deteriorating services; thirdly, they review commissioning for palliative care, which too frequently leaves hospices out of pocket for providing basic services and which leads to significant disparities within and between communities; and finally, they introduce a specific national hospice workforce plan to cut vacancy rates with the utmost urgency.

It is vital that the Government commit to action to ensure that every child whose years are shortened, and every family involved, can make the most of every moment they have left together, just as Fred, Carey and the rest of the family were able to do.