Critics contend that England’s National Health Service is not meeting legal obligations to deliver end-of-life care for terminally ill children in their homes, resulting in significant variation in service availability across the country.
According to freedom of information requests conducted by the charity Together for Short Lives, only 13 of the 42 integrated care boards that commission health services in England are demonstrating provision of around-the-clock home-based end-of-life care for children. Fifteen boards reported not commissioning such services at all, 10 indicated they were providing only partial coverage, and 3 stated they were still organizing care. The Health and Care Act 2022 legally requires these boards to ensure comprehensive end-of-life care is available when a child is dying at home.
Approximately 89,000 children under 19 in England have life-limiting conditions, with around 1,600 dying annually. The population of children with such conditions has nearly tripled since 2003-04, and the medical complexities associated with their illnesses have intensified. The absence of adequate home-based services forces many families to seek emergency department care or hospital admission, with some children dying in hospital rather than achieving their preferred place of death.
Charity leaders attribute the gaps partly to financial pressures on integrated care boards and to the perception that palliative care primarily serves older populations. Additionally, references to children and young people were reportedly removed from recent drafts of the government’s forthcoming palliative care framework. Children’s Commissioner for England Rachel de Souza has previously noted that some young people with life-limiting illnesses spend extended periods in hospitals due to insufficient alternative care arrangements, with disparities affecting children from economically disadvantaged backgrounds and ethnic minority communities.
The NHS Alliance, representing the integrated care boards, acknowledged the importance of universal access to children’s end-of-life care while noting that commissioning such services involves complexity due to involvement of multiple organizations and varying regional arrangements.
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