Every day is different in children’s hospice care

Pictured: Heidi enjoys the Woodland Walk at Chestnut Tree House with healthcare assistant Anna

Children’s Hospice Week is 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, Associate Director of Children’s 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 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 Paddington bear afternoon tea party, zoo visits to our 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.

In late 2024, Chestnut Tree House launched COAST – a specialist paediatric palliative care team. Based at the hospice, they are 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 are going to grow it in 2026 so we can be there for even more families.” 

Campaigning for sustainable funding

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 specialist palliative care services. Children’s hospice representatives from across the UK will be visiting parliament to raise awareness of the impact of children’s hospice so MPs can hear directly from those experiencing their exceptional care.

Chestnut Tree House has cared for more than 1,486 children since it opened in 2003 and each year has approximately 300 children and young people on its caseload. “The cost of providing all of Chestnut Tree House’s care services is almost £9 million a year, with less than a tenth of this coming from government funding,” Sharon said. “Children’s hospices bring precious moments of happiness to families of children living with serious illness. But they’re under real funding pressure: without more support, they can’t provide all the care families rely on. We see first hand every day the incredible impact of specialist palliative care and want this to be available for all families, no matter where they live.” 

Making memories with families

During the summer, the hospice is sharing the story of one young person who was supported by Chestnut Tree House. When Millie was diagnosed with a brain tumour, the team at Chestnut helped her and her family make precious memories together, and enabled Millie to face the end of her life on her own terms – with extraordinary courage.

Mum Shelley said: “Our community nurses suggested we contact Chestnut Tree House. Millie’s first reaction was heartbreakingly honest. She said: ‘That’s where people go to die. And I’m not going to die.’

“But Millie and her Chestnut nurse Leanne bonded instantly, and the House became somewhere Millie loved. A place where she was more than her illness. There were pizza-making evenings, pamper days, laughter and friendship.”

When Millie and her family received the news that there were no more treatment options, they called Leanne and said ‘we need help’. “Chestnut was there immediately. They helped Millie make choices, make memories and face the unimaginable with courage.” Just three short weeks after being given her terminal diagnosis, Millie died. She was only 18.

“After her death, Chestnut offered us the Stars bereavement suite. We were so grateful as we couldn’t bear the thought of her being alone at the undertakers. They played her celebration playlist every day. Our keyworker, Helen, visited daily and lovingly helped prepare Millie for her funeral. When the worst happened, they were there for us – practically, emotionally and unconditionally.”