Campaigners and medical charities have raised concerns about widespread gaps in end-of-life care services for seriously ill children across England’s National Health Service. The issue prevents many young people from fulfilling their preference to spend their final days at home, with some instead passing away in hospital settings.
Approximately 89,000 under-19s in England currently live with life-limiting conditions, with around 1,600 dying annually. The numbers have risen substantially since 2003-04, and the medical complexity of these cases has increased correspondingly. Under the Health and Care Act 2022, the NHS’s 42 integrated care boards are legally required to provide round-the-clock specialist end-of-life care at home when children are dying. However, freedom of information requests by the charity Together for Short Lives revealed significant non-compliance: 15 boards (36%) do not commission such services at all, only 13 (31%) demonstrated provision of the full range required, 10 (24%) offered partial services, and 3 (7%) indicated services were still being arranged.
Charity leaders attribute the failures to constrained finances and institutional assumptions that palliative care primarily serves older populations. The absence of dedicated provisions forces some families to seek emergency care, resulting in hospital admissions and deaths that might otherwise occur at home. One family whose child received appropriate support described the experience as profoundly beneficial, while expressing concern about others in similar circumstances lacking equivalent resources.
Officials acknowledge that access should be universal regardless of location, though they note that coordinating services across multiple providers presents operational challenges. Recent government guidance on palliative care services notably removed specific references to children and young people in its latest version, raising additional concerns among advocacy groups about institutional priority-setting in this area.
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