Call for robust data on seriously ill children

Together for Short Lives has welcomed an important new report commissioned by the Council for Disabled Children (CDC) and True Colours Trust, which highlights the lack of knowledge about the numbers of children with complex disabilities and/or life-limiting conditions.

‘Understanding the needs of disabled children with complex needs or life-limiting conditions’ seeks to:

  • provide a definitive picture of the type of data that is available
  • understand what this data tells us about this group of children and young people
  • identify gaps in current data collection
  • develop an action plan with key stakeholders to drive forward improvements.

The population of children explored by the report’s author, Anne Pinney, is those with complex disability, some of whom will have a life-limiting or life-threatening condition. The report shows that numbers are rising. Our own commissioned research, carried out by Dr Lorna Fraser, showed that there were 49,000 children and young people with life-limiting and life-threatening conditions in the UK and similarly showed that prevalence was increasing. However, the fundamental problems raised in the report must be overcome if we are to make sure that every child and young person in the UK with these conditions can access the palliative care they need.

The report rightly recognises that it is impossible to effectively plan and fund services for disabled children and young people if no one knows where they are. We back the Council for Disabled Children (CDC) and True Colours Trust’s recommendation that government should do more to develop a clearer picture of their number and needs. Together for Short Lives is pressing the government to make sure that the number and needs of children and young people with life-limiting conditions are more accurately monitored. Without this action, it will not be possible to address the alarming postcode lottery of support on offer to children and young people who need palliative care, uncovered by Together for Short Lives’ own findings.

Barbara Gelb OBE, Chief Executive of Together for Short Lives, said:

“This important report sounds another warning bell about the lack of clear data relating to the number and needs of disabled children with complex needs. It chimes with our work to press for robust data about those children with life-limiting conditions. 

“I join the CDC and the True Colours Trust in calling on the government, NHS and local authorities to do more to create joined-up data sources and to make sure that vital information is collected. Without a clearer understanding of children and young people with life-limiting conditions it will not be possible to plan and fund the lifeline palliative care they rely on. I make an open offer to help ministers to rectify this fundamental problem.”

Notes to editors

Fraser L et al (2012). Rising National Prevalence of Life-limiting Conditions in Children in England, Paediatrics, Vol 129, No 4.   http://pediatrics.aapublications.org/content/129/4/e3923http://pediatrics.aapublications.org/content/129/4/e3923

Together for Short Lives has published maps which show, for the first time, how well palliative care for children and young people with life-limiting or life-threatening conditions is being planned and funded by the NHS and local authorities in England. These are available to view at www.togetherforshortlives.org.uk/datamap

The CHiSP study (2015) showed a 50% increase over a 10-year period in the number of children and young people with life-limiting conditions in Scotland; their numbers rose from 4,334 in 2004 to 6,661 in 2014.

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