The report by National Child Mortality Database (NCMD) researchers based at the University of Bristol, found 54% (5,134) of the 9,517 child deaths over a three-year period were of children with life-limiting conditions (LLCs), such as cancer, muscular dystrophy, and severe cerebral palsy.
Co-lead author Karen Luyt, Professor in Neonatal Medicine and NCMD Programme Lead, said: “Every child’s death is a devastating tragedy. The report findings demonstrate how much more must be done to better support all parents and carers, who are a lifeline for these most vulnerable children.
“The number of children with life-limiting conditions is increasing and they are living longer. But our findings reveal major systemic issues, including geographical funding disparities for support, which are significantly compromising their care. Urgent reform is needed to reduce suffering, provide the same levels of support across the country, and dignity for all children and their families.”
Life-limiting conditions, defined as having no reasonable hope for cure and likely resulting in earlier death, cause progressive deterioration. Children become increasingly dependent on their parents and carers, and may have complex medical needs. The report also found the vast majority (77%) of children with LLCs died in hospital and the highest number of deaths – 58% equating to 2,991 – occurred in babies under one year old.
All child deaths are reviewed by the Child Death Overview Panels (CDOPs) to assess service provision and possible areas of concern. Most of the deaths covered in the report (96%) had completed case reviews, where recurring problems with palliative care service provision were identified.
Findings uncovered inconsistent funding arrangements for the delivery of paediatric, including perinatal and neonatal, palliative care across regions of the country. Lack of end-of-life care coordination, named medical specialists, timely advance care plans, and engagement with palliative care were repeatedly cited in reviews. Issues with access to symptom control medications including delays in prescribing and lack of convenient availability were identified in more than 150 reviews. In 235 cases there was no Advance Care Plan (ACP) in place at the time of the child’s death and 138 reviews found there was no symptom management plan. Only a small proportion of the case reviews studied included information about what pre-bereavement and bereavement support was offered and discussed with children’s parents or carers, indicating another important gap.
The report makes urgent recommendations, including ensuring the same levels of support are available nationwide, providing 24/7 community palliative care access, a named key worker for bereaved families, and mandatory specialist training. Advance care plans – including visibility of resuscitation preferences – must be more accessible, along with essential end-of-life medications which may need special handling or off-label use.
Prof Luyt said: “Dedicated healthcare professionals are doing their very best to deliver compassionate, coordinated care despite significant gaps in resources. But insights from the frontline also sadly reveal preventable distress to children caused by delayed symptom control, poor communication, no parallel planning, and a lack of specialist support.
“Many teams are filling service gaps out of goodwill alone, often beyond normal working hours. This is not sustainable and fails our most vulnerable children.”
The report also identifies ethnicity and deprivation as factors. Children from Asian backgrounds had the highest proportion of deaths involving LLCs. More children with life-limiting conditions who died were from the most deprived areas, in comparison to the least deprived.
The report findings are reinforced and supplemented by stories of bereaved families, who give compelling insights into their daily experiences and struggles with being adequately supported.
Emily Tammam, a bereaved parent, whose ten-year-old daughter Neve died from an aggressive brain tumour two years ago, paid tribute to “incredible” care staff. But she also highlighted the “lack of a fast-track system for education support, when a child is terminally ill” which “had a profound impact on Neve’s quality of life.” Although her daughter had a Continuing Care Package, she observed: “there were too few palliative care experienced nurses…The nurses and carers themselves were mostly wonderful but the system was complex and it did not always feel like Neve’s wellbeing was its priority.”
Emily also describes a lack of facilitated peer support before and after bereavement: “I yearned for the experience and wisdom from parents who had walked this path before and could share and guide me.”
Nick Carroll, Chief Executive of Together for Short Lives, the UK’s leading charity for children’s palliative care, said: “We often hear from parents and carers that they had to fight throughout their child’s short life, so it is not a surprise that this vital report confirms too many families struggle to access the support they need.
“The challenges it highlights are deeply concerning and the depressing reality is all too often this is not caused by medical complexity, but by where a family lives. We know there are many examples of incredible care happening every day but the truth is our system is not sustainable. Our vision is that every child, no matter where they live, can access sustainable, high quality palliative care. Time is short for seriously ill children and their families. Urgent action is needed from government, the NHS and others to fix it.”
Prof Luyt added: “Further important research is needed to assess and better understand barriers to timely medication delivery at home, cultural and other factors influencing care choices, as well as outcomes from early, antenatal palliative care planning.”
National Child Mortality Database (NCMD) programme thematic report
‘Infants, children, and young people with life-limiting conditions. Learning from child death reviews on palliative and end of life care provision’ by Sylvia Stoianova et al.