Every day is different in children’s hospice care

This week is Children’s Hospice Week (June 16-22) and it’s a time for us to celebrate and share some of the amazing work that happens at Chestnut Tree House – the children’s hospice for Sussex and South East Hampshire. 

If you asked people what comes to mind when they hear the phrase ‘children’s palliative care’, the words ‘speedboat’, ‘music festival’ or ‘mega messy play’ might not be the first thing they say. But for staff at Chestnut Tree House, these are very familiar phrases and just a glimpse of some of the incredible experiences they are making happen for children, young people and their families every day. 

Children with life-limiting conditions are living longer but often with increased medical complexity which requires skilled, intense and often continuous care. This doesn’t mean, however, that they should be missing out on the fun, adventure and freedom so treasured in childhood. 

“We’re in the ‘yes’ business,” says Sharon Wheeler, Head of Clinical Services at Chestnut Tree House. “Our team combines the best of both worlds for the families we support. We’ve got expert care on hand to help families – often in their own homes – whether that is medical support, or advice and care from our social work team, or end-of-life care. But we also have the most energetic and creative activities team you can imagine. If a child or young person says they want to do something, we usually find a way.” 

During the summer, the team has a packed schedule of activities for its families. From wheelchair accessible bike rides to a Wild West party, a sibling camp-out to its very own music festival – Chestival – there is something for everyone, and all delivered with the support of their expert care. The team has been adding more activities across its catchment too, including brunches for parents and hospital visits for those on longer stays unable to join in-house activities. 

But of course, the care team is also a specialist in end-of-life care and supports many families – including those who have experienced an unexpected death.  

Late last year, Chestnut Tree House launched its new COAST service – a specialist paediatric palliative care team based at the hospice focused on reaching more families in Sussex whose circumstances might make it difficult for them to get the right support for their child at end of life. It’s the first service of its kind in Sussex. 

“We believe that dignity of care means empowering children and families to choose where they spend their final days. If home is the best place for them, they need to be able to get the right support,” Sharon said. “You only have one chance to get the end of life right – and we believe this service will transform the experience of many families. COAST is small at the moment, but we hope to be able to grow it in time so we can be there for even more families.” 

Children’s hospice charity, Together for Short Lives, is campaigning during this year’s Children’s Hospice Week to raise awareness of the gap in funding for vital services like COAST. Its recent report – Built to last? The State of Children’s Palliative Care in 2025 – describes children’s palliative care as a ‘postcode lottery’ for families. The funding gap – now at £310 million for England – has grown by £15 million in one year. 

Chestnut Tree House has cared for more than 1,100 children since it opened in 2003 and each year has approximately 300 children and young people on its caseload. In the last financial year, 224 children and young people received a visit from our Community Nursing Team. “The cost of providing all of Chestnut Tree House’s care services is almost £6 million a year, with only 21% of this coming from government funding,” Sharon said. “We’re supportive of Together for Short Lives’ call for a full review into the way children’s palliative care is planned and funded in England. We see firsthand every day the incredible impact of specialist palliative care and want this to be available for all families, no matter where they live.” 

One young person currently supported by the team is Thomas. He suffered a perinatal stroke when he was just one day old, causing substantial damage to his brain. Thomas and his Mum Paula were at Chestnut Tree House during a recent ‘Fun at the Farm’ day organised by the activities team. Paula shared some of her experience: “When you have a child like Thomas, you grieve for all the things he won’t be able to do. All through the pregnancy and even before that, I’d been dreaming of watching my son run and play with his friends, then growing up and going to college. It’s taken time to come to terms with the new reality,” she said. 

“For the moment, we’re trying to build all the memories we can. We take him places that offer new sensory experiences – so even if he can’t see, he will catch the scent of a barbecue, smell herbs in the garden, stroke an animal or feel the grass on his skin. Bringing him to Chestnut, the experiences he has here and the support for all the family, helps us live the best life we can.”