Gaps in NHS end-of-life care ‘denying ill children chance to die at home’
Source: Guardian Health ↗
Serious concerns have been raised after a Freedom of Information investigation revealed that a substantial portion of England’s integrated care boards (ICBs) are not fulfilling their legal duty to provide at‑home end‑of‑life care for children with life‑limiting conditions. Under the Health and Care Act 2022, all 42 ICBs must ensure round‑the‑clock specialist support—doctors, nurses and therapists—so that families can choose to have their seriously ill child die at home. The data, obtained by the charity Together for Short Lives, shows that 15 boards (36 %) do not commission any such services, only 13 (31 %) can demonstrate full provision, ten (24 %) offer partial care and three (7 %) are still organising it. With almost 89,000 under‑19s in England living with life‑limiting illnesses and about 1,600 dying each year, the shortfall forces many children to seek emergency care or be admitted to hospital, where they often die instead of at home.
The failure to deliver community‑based palliative care has been described as a “cruel” postcode lottery, disproportionately affecting families in poorer or ethnic‑minority areas. Children’s commissioner Rachel de Souza highlighted that some youngsters spend months or even years in hospital because safe, appropriate alternatives are unavailable, citing delays in care packages, a shortage of social‑care placements and housing problems. The charity’s chief executive, Nick Carroll, condemned the NHS for neglecting its responsibility, noting that medical advances have nearly tripled the number of children with complex, life‑limiting conditions since 2003‑04, yet the system has not adapted. An early draft of the government’s forthcoming modern service framework for palliative care referenced children and young people, but the latest version omitted this, raising concerns about policy commitment.
Personal testimonies underscore the impact of the service gap. Sarah Buchan Cooke recounted how her son Dylan, who suffered from the rare neurodegenerative Sandhoff disease, was able to die at home in January 2023 thanks to support from Great Ormond Street Hospital and Haven House hospice, describing the experience as “beautiful” and essential for the family. She expressed anguish for other families denied similar care. While the NHS Alliance, representing ICBs, did not comment directly on the findings, its assistant director of integrated care, Ian Perrin, acknowledged the complexity of commissioning child‑focused palliative services and pledged to work with families, providers and charities to reduce unwarranted variation and improve access, aiming for more children to receive compassionate care closer to home.
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