Communicating complex needs

Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and Disabilities Complexity Scale
Karen A Horridge


There are no good data about who and where disabled children are, or what their needs are.


To develop a system that collects and reports the needs of disabled children and their families to improve outcomes that make sense to them.

What we did

We wrote down the needs of 2,000 children who attended paediatric disability clinics in Sunderland. These included the needs that children and families told us were important to them. We wrote an explanatory glossary (pdf)  to explain what each term means so that everyone can understand.

What is the Disabilities Complexity Scale?

We added up:
  • C - the number of health conditions
  • T - technology dependencies 
  • F - family reported issues
  • R - need for round the clock care or not  
This communicates a lot more than just saying that a child’s needs are ‘complex’.

What did we learn from the data we collected?

  • Children with an intellectual disability had many more needs than those without.
  • Good data can help plan services that are more effective at meeting needs, leading to better outcomes for children and their families. 

Next steps

In England, doctors collect data about the needs of disabled children in the Children and Young People’s Health Services dataset. This will make the varying needs of disabled children and their families visible. If needs are visible, there is a better chance they will be met, wherever children live and whoever provides their healthcare. 


Mac Keith Press publishes two series of books: the Clinics in Developmental Medicine and the International Reviews of Child Neurology Series for the International Child Neurology Association.