Envisioning the Future of Child Hospice Care in the UK

When a child is diagnosed with a life‑limiting condition, time suddenly feels both painfully slow and heartbreakingly precious. Children’s hospices exist to make every one of those moments easier, warmer and more meaningful, for the child and the people who love them. Yet the landscape keeps shifting. More children are living longer with complex conditions, active caseloads have risen by 21 % in just one year, from an average of 248 to 301 per hospice in 2024/25, while costs, workforce pressures and patchy funding pull in the opposite direction. 

Families often describe the hospice as a safety net that lets ordinary life continue, where siblings can still go to swimming lessons and parents can finally sleep through the night. At a system level, those seemingly soft outcomes ripple outward, easing pressure on paediatric wards and community nursing teams.

Meanwhile, established technologies such as secure video calls, social‑media peer groups, and digitised records still have untapped potential. The report is blunt: innovation isn’t only about shiny new gadgets; it’s about using what exists systematically and well. Recent pilots of remote‑monitoring wearable tech have cut unplanned admissions by almost a fifth in six months, proving that small, low‑cost tech can produce big quality‑of‑life gains.

Hospice UK’s Health Report 2024 echoes that call, urging boards to embed technology not just in clinical care but in operations and donor relations so that services remain sustainable.

Expanding Access and Outreach

Geography will always be a challenging factor in outreach, as well as the so-called ‘post-code lottery’ that attributes funding and costs unequally. According to the Together For Short Lives report, Integrated Care Board spending on children’s hospice care ranges from £23 to £434 per child, a gap that cannot be explained by medical need alone. To close it, hospices are:

• Scaling hospice‑at‑home teams that deliver nursing, physio and creative therapies in living rooms and school classrooms.
• Partnering with community paediatricians and health visitors to trigger earlier referrals, long before a crisis hits.
• Running pop‑up clinics in rural GP surgeries to cut travel time.

Many providers have also begun social‑prescribing pilot programmes that link families with community gardens, music studios and adaptive sports clubs, showing how palliative support can stretch beyond medical tasks to everyday flourishing. In Kent alone, these projects reached 68 new families in 2024 and are slated to double next year if funding holds.

Together for Short Lives’ latest funding report warns that without secure long‑term investment, 50% of hospices would have to cut or stop end‑of‑life care, and 80% would reduce emotional support if current NHS grants lapse after 2025/26. Outreach can only flourish on solid financial ground.

The Commission into the Future of Hospice Care: Ten Years On

A decade ago, the commission into the future of hospice care challenged providers to integrate with mainstream healthcare, involve families in every decision, and invest in research. Thankfully, much of that vision is now visible on the ground: shared electronic records, family advisory boards, paediatric palliative modules in medical curricula, and joint hospital–hospice posts that smooth transfers.

Yet commissioners themselves cautioned that the work would be unfinished until every child could access hospice‑led support “from diagnosis to bereavement, irrespective of background”. The rising demand and funding squeeze suggest that this chapter is still being written. Continuous evaluation and honest reporting will keep the commission’s recommendations alive rather than archived. A mid‑term review, slated for 2026, will benchmark progress against the original 32 recommendations and highlight any blind spots.

Research and Education

Fresh evidence underpins compassionate care. Imperial College’s 2024 review catalogues studies into virtual‑reality pain distraction, gamified outcome measures, and AI‑powered memory platforms. Meanwhile, Together for Short Lives’ research into children’s hospice care funding priorities calls for larger trials on early palliative involvement, mental‑health outcomes for carers, and cost‑effectiveness of hospice‑at‑home models.

Workforce development is equally urgent. Some hospices now run e‑learning academies for district nurses, while others buddy junior doctors on rotation to demystify paediatric palliative medicine. New NIHR‑funded PhD fellowships will, for the first time, allow nurses and allied health professionals to pursue advanced research without leaving clinical practice, strengthening the discipline from within. These initiatives echo the Commission’s plea to weave hospice values into every discipline, not silo them.

Conclusion – hope, partnership and the road ahead

The future of hospice care will be shaped less by bricks and mortar than by connectivity, between hospital and home, technology and touch, policy and lived experience. Statutory grants currently cover only one pound in every nine that hospices spend on care, yet for every state pound invested, hospices deliver £3.32 in value through charitable fundraising and volunteer power.

Securing sustainable funding, embracing digital tools, and keeping families at the steering wheel are not competing priorities: they are interlocking gears. As Together for Short Lives reminds us, “no one should have to face their child’s short life, or death, alone”. A new cross‑party Children’s Palliative Care Bill, currently at committee stage, aims to enshrine that principle in law by guaranteeing 24/7 hospice‑at‑home services across England by 2028.

Step by step, hand in hand, day by day, the future these children deserve is the one we choose to build together. Find out how you can help the Hospice in the Weald Children’s Hospice by going on line or reaching out to our team.