Healthcare advocates have raised concerns about inconsistent provision of end-of-life care services for children across England’s National Health Service, with significant regional disparities affecting families’ ability to have dying children cared for at home.
According to freedom of information requests conducted by the charity Together for Short Lives, of the 42 integrated care boards responsible for commissioning such services, 15 (36%) do not commission services at all, 10 (24%) provide some but not all required care, only 13 (31%) demonstrated they were providing full services, and three (7%) reported still organizing care. Legal obligations under the Health and Care Act 2022 require these boards to ensure round-the-clock specialist care is available to children in their final days, yet this requirement is not being uniformly met across the country.
The consequences of these gaps include seriously ill children being forced to seek emergency care or hospital admission when home-based services are unavailable. Nearly 89,000 children under 19 in England currently have life-limiting conditions, a number that has nearly tripled since 2003-04. Approximately 1,600 die annually. Medical advances have extended survival for many, increasing both their numbers and the complexity of their care needs. The postcode lottery effect means access to preferred end-of-life arrangements depends significantly on geographic location.
Charity leaders and advocates have attributed the shortfalls to financial pressures on integrated care boards and a prevailing assumption within the system that palliative care is primarily intended for older populations. Concerns have also been raised that references to children’s palliative care were removed from a recent draft of the government’s planned palliative care service framework. Additionally, data indicates that children with life-limiting conditions disproportionately come from lower-income backgrounds or ethnic minority communities.
The NHS Alliance, representing integrated care boards, acknowledged the importance of universal access to end-of-life care for children while noting that commissioning such services involves complexities due to involvement of multiple organizations across different arrangements. Officials stated commitment to reducing regional variations and improving access to home-based care.
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