Understanding the needs of disabled children with complex needs or life-limiting conditions

This report by the Council For Disabled Children and The True Colours Trust looks at what we can learn from national data on the numbers of children with complex needs or life-limiting conditions.

Together with the True Colours Trust, we commissioned this piece of research because we wanted a definitive picture of the type of data that is available; to understand what this data tells us about the population and whether it shows us anything useful in terms of developments and/or changes in the population; to identify gaps in current data collection; and to develop an action plan with key stakeholders to drive forward improvements.

It's the first analysis of the numbers of disabled children with complex needs and life-limiting conditions in over a decade, and estimates that numbers have increased dramatically by over 50% since 2004, from 49,300 to 73,000 children and young people.

We believe that disabled children and young people with complex needs and/or life-limiting conditions deserve better support than they currently receive. The Council for Disabled Children and the True Colours Trust are committed to improving the national data on these children because, without robust and accurate data, it is impossible to commission and provide services which meet their needs and enable them to live full lives. This report is a first, important step, in meeting the data challenge.