Number of children with life-limiting conditions is rising, new study reveals

Categories: Care, Featured, and Research.

The number of children with life-limiting or life-threatening conditions in England is rising significantly, a new study by the University of York has found.

The Make Every Child Count study found that the number of children with terminal illness increased to 86,625 in 2017/2018, compared to 32,975 in 2001/2002.

The research has been published amid the Coronavirus crisis in the UK, which has already had a far-reaching and negative impact on families caring for seriously ill children, who are feeling frightened, isolated and alone, with some families struggling to get the right care and support for their child.

Responding to predictions that that the number will rise at least another 11 per cent by 2030, children’s palliative care charity Together for Short Lives has called on the government and the NHS to make sure seriously ill children and their families can access the lifeline services they rely on.

The new research also revealed that the prevalence of life-limiting conditions is by far the greatest in babies under the age of one. Additionally more young people with life-limiting conditions are living to the age of 19 years; and while this is positive, Together for Short Lives have stated that there is an urgent need to make sure that children’s palliative care services are properly planned, funded and delivered to ensure these young people and their families can live life to the full.

Other key findings of the study include:

  • The prevalence of children with life-limiting conditions has increased from 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
  • 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 per cent

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

Professor Lorna Fraser, Director of the Martin House Research Centre at the University of York and the report’s lead author, commented: “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 is likely to continue to rise. 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.”

Andy Fletcher CEO of Together for Short Lives, said: “The Make Every Child Count research is crucial. 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 come 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.”

To read the report visit Make Every Child Count