Make Every Child Count

This study looks at the number of children with life-limiting conditions in England, showing a significant rise in number over 17 years. The study used routinely collected hospital and death certificate data in England to provide an up-to-date count of children and young people with life-limiting and life-threatening conditions. The research shows that the number of children in England with life-limiting or life-threatening conditions increased to 86,625 in 2017/2018 compared to 32,975 in 2001/2002.

The Make Every Child Count, Estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom study was conducted by Professor Lorna Fraser at the Martin House Research Centre, University of York and funded by The True Colours Trust. You can download a two page summary of the key findings, or the full report using the download buttons on this page. There’s also a helpful summary document by Government Office Region, but stress the importance of reading this in conjunction with the full make Every Child report. Or read the executive summary below.

Launch webinar

Executive summary

1. Life-limiting and life-threatening conditions (LLC) are definitions which have been used to describe the population of children who may benefit from input from paediatric palliative care services.
2. Palliative care for children and young people with life-limiting or life-threatening conditions is an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life and death.
3. This study used routinely collect hospital and death certificate data from England to provide an update of current numbers and prevalence of children (0-19 years) with a life-limiting condition and estimate future prevalence (up to 2030).
4. Due to data availability estimates of future prevalence for Scotland, Wales and Northern Ireland were based on data from Scotland.
5. Children were identified as having a LLC using a list of previously developed diagnostic codes (ICD 10). The dataset for England contained 359,634 individuals over a 17-year time period.
6. The national prevalence of LLC in children (aged 0-19 years) in England had increased over 17 years from 26.7 per 10000 in 2001/2 to 66.4 per 10000 in 2017/18. Excluding some diagnoses which may not be considered LLC reduced this prevalence only slightly to 63.2 per 10000 in 2017/18.
7. There was some evidence in these data that this increase in prevalence was driven by both an increase in recording of these diagnoses and an increase in survival in this population. The former may reflect a change in coding practice rather than a true increase in incidence.
8. The prevalence of LLCs was highest in the under 1-year age group at 226.5 per 10,000 in 2017/18.
9. The prevalence of LLCs was highest for congenital abnormalities which by 2017/18 was 27.2 per 10,000 more than twice the next most prevalent group, neurological disorders (10.8 per 10,000).
10. The prevalence of LLCs was significantly higher among boys (72.5 per 10,000 vs girls 60.0 per 10,000 (2017/18) although there was no difference in the rise in prevalence between sexes over time.
11. Prevalence of LLC are highest amongst children of Pakistani origin (103.9 per 10,000) and lowest among children of Chinese origin (32.0 per 10,000) in 2017/18. This is important in terms of flexibility of service to meet the needs of all children.
12. More children than expected with a LLC lived in areas of higher deprivation (13% most derived versus 8% in least deprived). The deprivation categories were population weighted therefore you would expect ~10% of children to have a LLC in each category.
13. The future prevalence of children aged 0- 19 years with a LLC in England is estimated to be between 67.0 and 84.2 per 10,000. There is a range of uncertainty around these estimates.
    The estimated future prevalence in 2030 for Scotland (51.0-55.8 per 10,000), Wales (50.8-55.6 per 10,000) and Northern Ireland (52.6-56.5 per 10,000) are lower which may reflect different demographics of the population.
14. 10.4% (n=37,328) of these children with a LLC died during the study period, 8.4% (n=30,187) of whom died before age 20. There are large number of deaths both in those under 1 year of age but also in young adults, highlighting the need for age specific services.
15. There are increasing numbers of children with a LLC who have a hospital stay of greater than 28 days each year, rising from 2482 in 2001/2 to 3538 in 2017/18. This will impact on hospital services.
16. These data did not contain any measure of complexity of the underlying condition or the needs of the child or family, future research and data collection should address this gap.