This year, for Children’s Hospice Week, we joined Together for Short Lives, alongside other children’s hospices and families at Westminster, to share powerful stories about what children’s hospice care really means – not just at the end-of-life, but every day.
When people hear the word ‘hospice’, they quite often think the worst, but for Ella and her family, Jigsaw is a safe place. For Children’s Hospice Week, we have been celebrating the precious moments of happiness children’s hospices bring to families of children living with life-limiting conditions.
Ella and her family have been receiving care from Jigsaw for over 3 years, accessing regular respite care that has become a much-loved and vital part of their lives. Ella was born with a rare brain condition, Lissencephaly, leading to a range of complex needs, which means facing daily challenges that many people never have to think about.
For Ella and her family, Jigsaw has become a place where they can forget about these daily challenges. Making the support that Ella and her family receive not just important, but essential.
Hayleigh, Ella’s mum, shared the trust they have in the Jigsaw team, “I believed that no-one could look after Ella the way I do, but the staff are absolutely amazing, they’ve done everything at my pace, making me feel comfortable and just building that trust – which is so crucial when they are looking after the most special thing in your life.”
For Hayleigh, she now couldn’t imagine Cumbria’s only children’s hospice not being part of their lives.
But children’s hospices are under real funding pressure: without more support, they can’t provide all the care families rely on.
Together for Short Lives have released a new report highlighting the growing pressure facing children’s hospices. The report shows that costs for children’s hospices have risen by around a third in recent years, while funding has not kept pace – leaving almost 9 in 10 hospices expecting to spend more than they receive this year.
We took this message to Westminster, ensuring that the voices of families are heard at a national level. Demand for children’s palliative care is growing, while funding pressures continue to challenge services. By sharing the real-life impact of hospice care, we can help shape a more sustainable future for children’s hospices.
The visit to Westminster was an important opportunity to speak directly with MPs and call for fair, sustainable funding – so families can continue to access the vital care and support they need, now and in the future.
Suzanne, Director of Clinical Services, said “we’re grateful to MPs for taking the time to hear first-hand from parents and carers what hospice care means to them and why fair hospice funding matters so much.”
Jigsaw mostly relies on the generosity of our local community to fund expert care for babies, children and young adults. This new report shows children’s hospices now give nearly £4 of care for every £1 the NHS spends.
Children’s hospices are being forced to rely on charitable income and financial reserves just to maintain essential services. Three-fifths of children’s hospices across the UK (60%) ended 2025/26 with a budget deficit.
From our dedicated clinical teams to our volunteers, fundraisers, partners and supporters – everything we do is made possible by our community. Whether you’ve donated, taken part in an event, shared a post, or simply helped to start a conversation, you’ve played a part in raising awareness and supporting local families.
Find out more about the report from Together For Short Lives, here.
Fair Funding for children’s hospice care is about ensuring every child and every family has access to the care, comfort and support they deserve, whenever they need it. By working together to create a more sustainable future, we can help secure the future of these vital services, so no family faces the unimaginable without the right support by their side.
