Seriously ill children in England are being denied the chance to die at home because 15 of the NHS's 42 integrated care boards fail to commission legally mandated 24-hour at-home end-of-life care. This systemic gap forces dying children into hospitals, while a separate UK-wide poll reveals that 55% of healthcare staff have had to deliver end-of-life treatment in undignified hospital corridors due to severe staffing shortages. In Derbyshire, a statutory review found that service deficiencies contributed to 86% of reviewed child deaths in 2024-25.
At-home paediatric end-of-life care
- ▪The NHS in many parts of England is failing to provide the community care required to allow seriously ill children to die at home
- ▪Approximately 1,600 children with life-limiting conditions die each year in England
- ▪The number of children under 19 in England with life-limiting conditions has almost trebled since the 2003-04 period, reaching nearly 89,000
Integrated care board commissioning gaps
- ▪Under the Health and Care Act 2022, the 42 integrated care boards in England are legally obligated to ensure 24-hour end-of-life care is provided at home for dying children
- ▪Only 13 of England's 42 integrated care boards were able to demonstrate that they commission 24-hour at-home end-of-life care for children
- ▪Freedom of information requests by the charity Together for Short Lives revealed that 15 of England's 42 integrated care boards do not commission 24-hour at-home end-of-life care for children
Corridor-based palliative care provision
- ▪A joint poll by Marie Curie and Nursing Standard of 1,153 UK healthcare professionals found that 55% had delivered end-of-life treatment in hospital corridors or non-clinical areas
- ▪Among surveyed healthcare staff, 72.2% identified inadequate staffing numbers and 56.2% identified time deficits as major constraints to delivering end-of-life treatment
- ▪Over 70% of surveyed healthcare professionals reported that delivering palliative care in unsuitable environments damages patient dignity and causes deep distress to families
Advance care planning failures
- ▪Marie Curie is urging the UK Government to use the proposed Health Bill to mandate a unified patient file accessible to all end-of-life providers
- ▪Marie Curie reported widespread flaws in advance care planning, which generate uncertainty regarding patients' wishes during their final days
Inappropriate resuscitation attempts
- ▪Over one-third of nursing staff surveyed by Marie Curie and Nursing Standard reported witnessing resuscitation attempts they considered completely inappropriate
- ▪A healthcare practitioner recalled resuscitation being attempted on a terminally ill cancer patient who ultimately died on a bathroom floor
Derbyshire service deficiencies
- ▪In Derbyshire, 86% of the 65 child death cases reviewed in 2024-25 identified service provision factors, such as staffing and bed shortages, as contributory factors
- ▪The Derby and Derbyshire Child Death Overview Panel warned that families urgently need improvements to paediatric end-of-life care following years of unaddressed concerns
- ▪The Derby and Derbyshire Child Death Overview Panel identified gaps in child palliative care provision dating back to 2020, following the case of a young person with terminal bone cancer who was unable to die at home
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