Gaps in NHS end-of-life care ‘denying ill children chance to die at home’

Critics argue that the National Health Service (NHS) in England is flouting its legal duty to provide necessary care for seriously ill children, denying them the chance to die at home. This failure is resulting in a "cruel" postcode lottery, where families in certain areas are being overlooked. The issue stems from the 42 integrated care boards (ICBs) that are legally required to ensure round-the-clock at-home end-of-life care for these children under the Health and Care Act 2022.

However, 15 (36%) of these boards do not commission such services, according to a freedom of information request by the charity Together for Short Lives. Only 13 (31%) of the ICBs can demonstrate that they are providing the required care. The remaining 41% are either providing some but not all of the necessary care or are still organizing it.

This lack of provision forces many children to receive treatment in hospitals, where they may ultimately die rather than at home. According to the charity's chief executive, Nick Carroll, this situation is deeply troubling and shames everyone involved. The charity attributes the issue to the ICBs' financial constraints and their common assumption that palliative care is primarily for older adults, despite the increasing number of children with life-limiting conditions.

A recent survey shows that over 88,000 children under the age of 19 in England have such conditions, with their numbers having nearly tripled since 2003-04. Many of these children face significant challenges, and the complexities of their illnesses have also increased. The charity's research shows that families often have to seek help at A&E or be admitted to the hospital if their child's care is not available at home.

A mother of a child with a rare neurodegenerative condition shares her family's experience of how crucial it was for her son to die at home. She emphasizes that having control over such decisions significantly impacts the family's well-being. The children's commissioner for England, Sarah Buchan Cooke, also highlights the disparity in care, noting that some families are forced to keep their children in hospitals for months or even years due to insufficient alternative arrangements.

The NHS Alliance, representing the ICBs, agrees that access to end-of-life care should be universal for these children but emphasizes the complexity of commissioning such services. They stress the importance of collaboration between families, providers, charities, and national partners to reduce variations in care and improve access.