IJPDS International Journal of Population Data Science

A new study from a team of researchers at University College London and published in the International Journal of Population Data Science (IJPDS), finds that 4 in 10 children with a major congenital anomaly were identified as needing special educational needs provision during primary school. The proportion differed depending on the type of major congenital anomaly, but almost all children in England with chromosomal major congenital anomalies (such as Down syndrome and Turner syndrome) are identified as needing some form of special educational needs provision in primary school.

The study also revealed that the proportion of children with recorded special education provision decreased over time, which matches reports of the rising unmet needs in these services.

For every hundred children born in England, two to three have one or more major congenital anomaly. Some of these children have complex health problems requiring additional support from health and education services as they grow up. However, there is very little information on the proportion of children with specific major congenital anomalies who are allocated support for special education needs in schools in England. Researchers at UCL used the ECHILD database (Education and Child Health Insights from Linked Data) to answer this question.

ECHILD joins together existing health, education and social care information for approximately 20 million children in England. The data that has been routinely collected from hospitals and schools, can provide valuable missing information about the proportion of children with a major congenital anomaly who are assigned support in school for special educational needs. This new information is useful for parents and practitioners, teachers and policy makers.

There is also great potential for future research to find out who is not receiving support for special educational needs that should be. Principal investigator, Ruth Gilbert commented that “ECHILD should be used to help services anticipate which children with long-term health conditions might need support in preschool day care, before starting school, to help them participate fully in school.”

 

Click here to view the full article

Co-author, Kate Lewis, Research Fellow – University College London Great Ormond Street Institute of Child Health, UK

Peppa, M., Lewis, K. M., De Stavola, B., Hardelid, P., Gilbert, R. and on behalf of the HOPE study (2025) “School-recorded special educational needs provision in children with major congenital anomalies: a linked administrative records study of births in England, 2003-2013”, International Journal of Population Data Science, 10(1). doi: 10.23889/ijpds.v10i1.2519.