Accessibility statement

Make Every Child Count

“Make Every Child Count” will give an up-to-date estimate of the number of babies, children and young people with life-limiting and life-threatening conditions across the UK and will help to predict levels of need in the future. Together for Short Lives has secured funding for this research from the True Colours Trust following a consultation with the children’s palliative care sector which identified this as a pressing need.

Little is known about the current number of children living with life-limiting and life-threatening conditions and new information is needed about their age, condition, ethnicity and where they live. A lack of accurate data on this population makes it difficult to plan, fund and deliver the right care and support that meets the needs of every child and their family.

The most recent estimate, from 2010, showed that there were at least 49,000 babies, children and young people with life-limiting conditions UK-wide1, but service providers suspect that this is an under-estimate for two key reasons. Firstly, advances in medicine mean that more babies are surviving complications at birth, and young people with complex conditions are living longer. And secondly, a recent research study by Dr Lorna Fraser on the prevalence of these children across Scotland, showed that there has been a continued increase in the number of children with life-limiting conditions up to 20152.

The Make Every Child Count research study will:

  • Estimate the number of babies, children and young people in the UK with life-limiting and life-threatening conditions.
  • Develop a model to predict the future number of these children.
  • Provide the evidence base to help policy makers, commissioners and service providers accurately plan, fund and deliver palliative care to all children and families who need it.


Please click on the link to down load the Final Report - Prevalence Final Report (PDF , 2,884kb)

Link below to the study information leaflet:-

The Increasing Number of Children with LLCs in the UK (PDF , 75kb)

Follow the link for the 'Life Limiting Conditions in Children and Young People in England: Prevalence and Survival Privacy Notice'.


Start Date: June 2018
End Date: January 2020 - COMPLETED