The need for pro-active planning and delivery of multidisciplinary (MDT) care to children with life-limiting conditions (LLC) is widely acknowledged, and ‘standards frameworks’ have been recommended by Together for Short Lives and others. Palliative and end-of-life care are important priorities of the United Kingdom government.Methods
We conducted a retrospective case-notes audit of 20 children (8 cancer and 12 non-cancer), aged 28 days to 16 years, who had died as a direct result of a LLC, against seven pre-agreed standards. Sudden deaths, neonatal deaths and deaths within a month of diagnosis were excluded.Recommendations and conclusion
Recognition of needs and planning for palliative care in children remains sub-optimal overall, especially so in children with non-cancer LLC. This audit has led to much introspection and an acknowledgement of the need for hearts-and-minds change in clinicians’ approaches. We hope to influence commissioners to develop a robust children’s palliative care service with a complex-care co-ordinator, rolling MDT meetings and dedicated paediatrician time. A sub-regional working group is mapping services to needs, in order to identify further gaps. A comprehensive care pathway that will incorporate palliative and end-of-life care plans has been written, with input from parent groups.