Seriously ill children across England are being prevented from dying at home due to gaps in National Health Service provision, according to critics who argue the system is violating its legal obligations.
Charity Together for Short Lives conducted freedom of information requests examining the 42 integrated care boards responsible for commissioning end-of-life services. The findings revealed significant disparities: 15 boards (36%) do not commission such services at all, only 13 (31%) demonstrated they were providing them, 10 (24%) offered partial services, and 3 (7%) stated they were still organizing care. These gaps are occurring despite legal requirements under the Health and Care Act 2022 mandating round-the-clock at-home care when children are dying.
The issue affects a substantial portion of England’s child population. The country has approximately 89,000 under-19s with life-limiting conditions, with around 1,600 dying annually. Medical advances have nearly tripled this population since 2003-04, and the complexity of their conditions has increased accordingly. Charity leadership contends that without proper home-based care infrastructure, families are denied the opportunity to spend final moments together in their preferred setting, with many children instead being hospitalized for end-of-life care.
The disparity in access across regions has been attributed to financial constraints on integrated care boards and misconceptions that palliative care serves primarily elderly patients. Recent statements from England’s children’s commissioner highlighted how delays in care arrangements and insufficient social care placements have left families in difficult circumstances, with vulnerable populations—including those from lower-income backgrounds and ethnic minorities—disproportionately affected.
The NHS Alliance, representing integrated care boards, acknowledged that all children should have universal access to end-of-life care but noted that commissioning such services across multiple organizations creates complexity. Advocates stress that family choice regarding where children receive end-of-life care should be a fundamental right.
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