Seriously ill children in England are being denied the chance to die at home because over a third of integrated care boards fail to commission required around-the-clock palliative services. Freedom of information requests reveal a widespread postcode lottery, leaving grieving families to face avoidable hospital admissions and prolonged stays during their final days.
Medical advances mean the number of under-19s living with life-limiting conditions has almost trebled since the 2003-04 period, reaching nearly 89,000 across England today. About 1,600 of these children die each year. Yet, despite the growing complexity of their needs, the health and care system frequently fails to provide the community support necessary for families to bring their children home.
Legal Duty Flouted Across Integrated Care Boards
Under the Health and Care Act 2022, England’s 42 integrated care boards (ICBs) hold a legal obligation to ensure round-the-clock end-of-life care is available at home for dying children. Freedom of information requests gathered by Together for Short Lives revealed a widespread postcode lottery showing that 15 ICBs, or 36 percent, do not commission these vital services at all.
Only 13 ICBs—representing 31 percent—demonstrated they were actively commissioning the required care. Another 10 boards provided partial care, while 3 indicated they were still attempting to organise provision. This breakdown leaves families stranded, frequently forcing very sick children to seek emergency treatment at A&E or spend their final days admitted to hospital wards.
“It is shocking that children with serious illnesses are waiting to leave hospital because the health and care system is not taking responsibility for their community care. To deny families the chance to spend precious moments together at home before their child dies is simply cruel.”
Nick Carroll, chief executive of Together for Short Lives
Carroll attributed the systemic failure to precarious ICB finances and a widespread assumption that palliative care is primarily for older adults. He also pointed out that while an early draft of the government’s forthcoming modern service framework for palliative care specifically included babies, children, and young people, that reference was dropped from the most recent version.
The Hidden Crisis of Prolonged Hospital Stays
The shortfall in community end-of-life care mirrors a broader, hidden crisis of children spending unnecessary weeks, months, or even years stuck in hospital beds. New analysis of NHS England data published by Children’s Commissioner Dame Rachel de Souza shows that more than 260,000 children spent three or more weeks in hospital over the course of their childhoods.
The commissioner’s report revealed that almost 70,000 children spent more than two months in hospital, with 1,300 confined for over a year. More than 14,000 children spent upward of 10 percent of their young lives on a ward, and over 400 spent half their lives there. Data indicates these prolonged stays disproportionately affect children from deprived backgrounds and ethnic minority communities.
“As ever, a lack of good data about these children’s lives is partly driving this failure. My work shows a hidden crisis, as services do not definitively know how many children are stuck, waiting to be discharged, how long they wait, or how many days’ worth of beds could be saved and offered to children who truly need to be there.”
Dame Rachel de Souza, Children’s Commissioner for England
Systemic Barriers Delaying Safe Discharges
Children medically fit to leave hospital remain stranded due to a combination of bureaucratic and structural bottlenecks. The analysis identifies long waits to secure community care packages, often prolonged by funding disputes between health and social care agencies, as a primary driver. Other compounding factors include a severe shortage of children’s social care placements, inconsistent access to nursing and therapeutic services, and housing issues.
Families often face extensive delays in securing suitable housing adaptations or specialised equipment required to care for medically complex children at home. One hospital that tracks discharge delays reported that 5 percent of children on its ward in June 2025 were medically ready to leave but remained trapped by factors outside the health service.
Families Caught in the Postcode Lottery
The human cost of these systemic gaps is starkly illustrated by families who managed to secure care against the odds. Sarah Buchan Cooke experienced the profound difference proper support makes when her son, Dylan, died at home in January 2023 just before turning four. Dylan lived with Sandhoff disease, a rare neurodegenerative condition requiring round-the-clock care, and spent long spells in hospital before receiving community support coordinated by Great Ormond Street Hospital and Haven House children’s hospice.
“At the end of his life it was a beautiful thing to have him at home. I can’t really imagine it any other way. I’m very aware of how fortunate we were. It breaks my heart to think of other families in our situation not being able to have that same level of care and support.”
Sarah Buchan Cooke
Without that coordinated support, families are left to navigate complex bureaucracies alone, often while managing terminal diagnoses.
Official Response and What Comes Next
Responding to the findings, the NHS Alliance, which represents integrated care boards, agreed that access to children’s end-of-life care should be universal. However, the organization emphasized that commissioning such specialized services involves significant operational complexity.
Ian Perrin, the alliance’s assistant director of integrated care, stated that every family supporting a child with a life-limiting condition should be able to access high-quality, compassionate palliative care regardless of geography.
