26 October 2026
Why demand for children’s palliative care is growing and what families need most
For families caring for a child who is seriously unwell, palliative care is about far more than what happens at the end of life. It is about helping children live as fully as possible, while giving parents and siblings the practical, emotional and clinical support they need along the way.
Demand for children’s palliative care in the UK is growing, while access to specialist support remains uneven. The question we should be asking is not simply how many children need palliative care, but what families need from that care, and whether the system is equipped to provide it. For organisations such as Noah’s Ark Children’s Hospice, this is a critical conversation. Because behind every statistic is a child who wants to play, a parent who needs to sleep, a sibling who needs attention, and a family trying to make the most of precious time together.
Why is demand for children’s palliative care increasing?
There are several reasons why more children and families need specialist palliative care. One is that more children with complex, life-threatening or life-shortening conditions are living for longer. Advances in medical treatment, earlier diagnosis and improvements in healthcare mean that conditions which may once have resulted in shorter lives can increasingly be managed over many years and into adulthood.
That is something to celebrate. But it also changes what families need. Research cited by the Royal College of Paediatrics and Child Health found that the prevalence of life-shortening conditions among children in England increased from 26 to 67 per 10,000 over a 17-year period, with further growth projected.
Across the UK, Together for Short Lives estimates that around 99,000 children and young people are living with life-threatening or life-shortening conditions. The organisation says this number has risen significantly because of advances in medical treatment, earlier diagnosis and improvements in health services and is expected to continue increasing.
These children can have highly complex needs. Some require specialist nursing, symptom management, medical equipment, therapies and coordinated support across home, hospital, hospice, education and social care. This means children’s palliative care is no longer something families should only encounter during the final days or weeks of a child’s life. Good paediatric palliative care can begin much earlier, helping families from diagnosis onwards and throughout a child’s life.
Palliative care is about living, not just dying
There is still a common misconception that palliative care means that a child is dying. In reality, children’s palliative care takes a much broader approach. It can support children with life-threatening or life-shortening conditions from diagnosis, helping manage symptoms, improve quality of life and provide emotional and practical support for the whole family. This distinction matters. A child may need specialist symptom management without being at the end of their life. A parent may need help understanding how to care for their child at home. A sibling may need somewhere safe to talk about what is happening. A family may need a short break from intensive caring responsibilities. These are not secondary needs. They are fundamental parts of caring for a child who is seriously unwell.
What do families need most?
Reliable support at home
For many families, home is where they want their child to spend as much time as possible. But caring for a child who is seriously unwell at home can involve complex medication regimes, specialist equipment, clinical interventions and constant vigilance. Parents can effectively become highly skilled carers overnight, often while trying to continue working, care for other children and maintain some sense of normal family life. That is why access to responsive community nursing and 24/7 children’s palliative care at home can make such a difference. Yet access remains inconsistent.
Together for Short Lives reported in 2025 that only 19% of Integrated Care Boards in England formally commissioned 24/7 end-of-life care at home in line with national standards. Families should not have fundamentally different options because of their postcode.
A team that sees the whole family
A child who is seriously unwell does not exist in isolation. Parents and carers can experience exhaustion, anxiety, grief and uncertainty. Siblings may struggle with changes to family life or feel that their needs have been pushed into the background. The best children’s hospice services therefore look beyond the clinical condition. Families need professionals who understand the child but also understand the family around them. They need emotional and psychological support alongside nursing and medical expertise. They need opportunities for siblings to be heard. And they need practical help that recognises the realities of everyday family life. A holistic approach is particularly important because caring responsibilities do not stop when a clinical appointment ends.
Respite without guilt
One of the most important things families often need is also one of the hardest to ask for: a break. Short breaks can give parents the opportunity to sleep, spend time together, attend appointments, work, see friends or simply breathe. Crucially, respite is not about separating families. It can help families sustain their caring role. The pressure on these services is growing. In 2026, Together for Short Lives reported that children’s hospices' average active caseload had increased by 11% in 2025/26, while the number of children receiving symptom management support had risen by 192% since 2019/20. At the same time, one third of children's hospices reported being forced to reduce the short breaks they provide. That should prompt a serious conversation about what we value in children's healthcare.
Continuity and coordination
Families can find themselves navigating multiple professionals and services: hospitals, GPs, community nurses, therapists, social care, schools and specialist hospice teams. When those services do not communicate effectively, parents can end up becoming the coordinator. They should not have to repeatedly explain their child's condition, chase referrals or work out which service to contact when something changes. Joined-up care matters. Children's palliative care works best when specialist services collaborate across settings and when families have trusted professionals they know they can turn to.
Choice and control
Every family is different. Some children will spend significant periods in hospital. Others may receive most of their care at home or through a children's hospice. Some families may need intensive clinical support; others may primarily need emotional support, respite or help with planning for the future. Families need genuine choice wherever possible, and the information and confidence to make decisions alongside professionals. That means listening to children and parents, understanding what matters to them and adapting care as their circumstances change.
What needs to change?
Meeting rising demand requires us to think differently about children's palliative care. First, it needs to be recognised as an essential part of children's healthcare, not an optional extra dependent on charitable fundraising. Second, services need sustainable funding so they can recruit and retain specialist staff and plan for the long term. Third, care needs to be designed around families rather than organisational boundaries. Home, hospital, hospice, education and community services should work together rather than leaving parents to bridge the gaps. And finally, we need to listen to families themselves. Because the most important question is not simply, what service can we provide? It is: what would make life better for this child and this family?
Building a future where families feel supported, not alone
The growth in demand for children's palliative care reflects, in part, a positive development: more children with complex medical conditions are living longer and experiencing more of childhood. But longer lives can also mean longer periods of intensive care. Our ambition should therefore be bigger than simply ensuring that services exist. We should strive for a system in which every child who is seriously unwell can access the right support, in the right place, at the right time, and where their parents and siblings are recognised as people who need care and support too. Children's hospice care can play a unique role in making that possible. It can provide clinical expertise alongside compassion. It can offer respite alongside specialist care. It can create space for families to spend time together outside the pressures of hospital. And, when the time comes, it can help families navigate the most difficult moments with dignity and support. For families facing serious childhood illness, these things are not luxuries. They are what make it possible to focus not only on illness, but on family life, relationships, memories and making every moment count.
As demand grows, the priority must be clear: build a children's palliative care system that grows with it, one that sees the whole child, supports the whole family and ensures that no family has to face serious childhood illness alone.
Find out more about our services or how you can make a referral to Noah's Ark.
