Campaigners and health officials are raising concerns about inconsistent access to end-of-life care services for children across England. According to research by the charity Together for Short Lives, significant gaps exist in the provision of at-home palliative care for seriously ill young people, with approximately 89,000 under-19s in England currently living with life-limiting conditions and roughly 1,600 dying each year.
Findings from freedom of information requests show that among the NHS’s 42 integrated care boards, only 13 reported actively commissioning round-the-clock at-home care services. The research indicates that 15 boards do not commission such services at all, 10 are providing partial coverage, and 3 are still organizing provision. This patchwork of services creates a postcode lottery effect, where access to end-of-life care depends on geographic location. The Health and Care Act 2022 legally requires all integrated care boards to ensure such care is available when a child is dying.
Leaders in the field attribute the gaps partly to financial constraints faced by integrated care boards and to a widespread assumption that palliative care is primarily intended for older adults. There are also concerns that recent versions of the government’s planned palliative care framework may not adequately emphasize services for children and young people, despite explicit references in earlier drafts.
Families affected by these gaps describe the impact as profound. One parent whose child was able to receive end-of-life care at home described the experience as crucial to family wellbeing, while expressing concern for families in similar situations who lack comparable support. Additional data highlights that children unable to access appropriate care alternatives are disproportionately from disadvantaged socioeconomic backgrounds or ethnic minority communities.
The NHS Alliance, representing integrated care boards, acknowledged the importance of universal access to children’s end-of-life care while noting that commissioning such services involves complex arrangements across multiple organizations and partners. Officials expressed commitment to reducing variation in access and improving care delivery closer to home.
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