Research shows a significant rise in the number of children with life-limiting conditions

• There has been a steep rise in the number of babies, children and young people with life-limiting or life-threatening conditions in England. The absolute number of these children has almost trebled in the last 17 years from 32,975 in 2001/02 to 86,625 in 2017/18.
• The prevalence of children with life-limiting conditions has increased from 26.7 per 10,000 in 2001 to 66.4 per 10,000 in 2017/18.
• Prevalence is higher in boys than girls
• The prevalence of life-limiting conditions was highest for congenital abnormalities.
• Prevalence is by far the greatest in babies under one year of age, as is the number of deaths.
• The number of young people with life-limiting conditions living to age 19 is increasing, from 921 in 2001/02 to 3,075 in 2017/18, and there is a large number of deaths among young people in their early 20s.
• The prevalence of life-limiting conditions is highest among the most deprived groups of the population, who are least able to afford the financial burden of caring for a child with a complex condition.
• The prevalence of life-limiting conditions is increasing across all regions of England, with the highest increase in the North West of England and Yorkshire and the Humber.
• The increase in number looks set to continue. The study’s most conservative prediction suggests that the number of children with life-limiting conditions will rise to between 95,318 and 97,242 in 2030 – an increase of 11%.

Whilst the increase may be partly down to better recording of hospital data and improved diagnosis, the study suggests that it is also likely to be because children are living longer as a result of better care being provided and advances in medical technology.

“The Make Every Child Count research shows that the overall number of children with serious, life-limiting or life-threatening conditions has grown in the last 17 years and the number of children is likely to continue to rise,” says Professor Lorna Fraser, Director of the Martin House Research Centre at the University of York. “We wanted to estimate the current national prevalence of children with life-limiting conditions and develop some robust predictions for future prevalence.

“The findings show that not only are there increasing numbers of children with life-limiting conditions, the prevalence is highest in the under ones, in areas of higher deprivation and in ethnic minority populations. The proportion of children living into young adulthood is also increasing. Hopefully these findings will help commissioners and service providers to work together to ensure that all these children and young people have access to accessible and age appropriate health services.”

“The Make Every Child Count research is crucial,” says Andy Fletcher CEO of Together for Short Lives. “This new data will be invaluable to help the government, the NHS, children’s palliative care providers and others to deliver the right care and support for children with life-limiting conditions, now and in the future. That more children are living for longer is good news, but with increased numbers comes different challenges. The specialist services needed to support babies under one year old with life-limiting conditions, where the mortality rate is highest, are different to those needed to support the growing number of young people who are living into early adulthood, but both are equally important to get right.”

“Our collective focus is understandably on responding to the COVID-19 pandemic right now. Over the past month our work has focused on supporting families caring for vulnerable and seriously ill children, who are feeling frightened and alone and whose lives have been hit-hard by the pandemic. In many ways the pandemic has exacerbated many of the challenges families were already facing in getting the support and services they need. So, we must not forget the growing number of children and young people with life-limiting and life-threatening conditions and their families who need care and support, both now and in the future. This research is an important foundation stone, and we’ll continue to work with government, commissioners and palliative care services in the NHS and charity sector to ensure that all children have access to properly funded services when and where they need them.”

The research was conducted by the Martin House Research Centre, University of York and funded by The True Colours Trust. “We are delighted to fund this vital piece of research,” says Lucy Sainsbury, Chair of the True Colours Trust. “We are committed to improving the national data on children with life-limiting and life-threatening conditions because without robust and accurate data, it is impossible to commission and provide the services they – and their families – need.  This research reveals that there is a significantly greater demand for services than previously understood. We hope the report will help shine a light on this often overlooked population and will be a catalyst to ensure that these families get the support they deserve.

The report is published today (23 April 2020) and will be launched by Professor Fraser via a Together for Short Lives’ live webinar.