The CHESS Study 2014

This study arose from a senior politician saying to us “I know that people with epilepsy are not counted in schools and I know that they have a wide range of cognitive and behavioural problems but you have to do something that brings this to everyone’s attention”. Our response was to have four international annual meetings that highlight these problems, a new course for professionals and this; The CHESS Study.

The purpose of this study was to document, on a population basis, difficulties with cognition and behaviour in children aged 4 to 16 years. 

The cognitive aspects included memory and processing speed, and the behavioural aspects included symptoms of Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Developmental Coordination Disorder (DCD), anxiety and depression.

At Young Epilepsy, we believe that every child with epilepsy deserves the right support to thrive in school. The CHESS Study was the first UK population-based research to explore the educational and behavioural challenges faced by children with ‘active’ epilepsy.

Key Findings

  • Widespread Difficulties
    • 95% of children had at least one significant difficulty in cognition or behaviour.
    • 55% had below-average IQ; 40% were in the learning disabled range.
    • 58% showed memory underachievement; 42% had slow processing speed.
    • 42% underachieved academically, especially in maths and sentence comprehension.
  • Behavioural Concerns
    • 60% met diagnostic criteria for at least one behavioural or motor disorder (e.g. ADHD, ASD, anxiety, depression, DCD).
    • Only 20% had previously been diagnosed, showing a major gap in recognition and support.
  • Parent vs Teacher Perceptions
    • Parents reported more concerns than teachers, especially around attention, behaviour, and school attendance.
    • Teachers often missed subtle but impactful issues like inattention and memory difficulties.

Why This Matters

  • Many children with epilepsy are not on the special educational needs register, yet still face serious challenges.
  • Without early psychological assessment, these difficulties go unnoticed and unsupported.
  • Current epilepsy guidelines focus on seizure management, not educational or behavioural needs.

Recommendations

  • Update epilepsy management guidelines to include mandatory psychological assessments.
  • Recognise epilepsy as a special educational need in schools.
  • Provide ongoing monitoring and tailored support in school settings.
  • Train school staff on the cognitive and behavioural impacts of epilepsy.
  • Improve communication between families, schools, and healthcare providers.

Positive Impact

  • Psychological assessments helped families and schools better understand children’s needs.
  • Parents reported improved school transitions, learning strategies, and emotional support.
  • Teachers gained confidence in supporting students with epilepsy after training sessions.

Next Steps

We call for:

  • More research into effective school-based interventions.
  • Better support for families and peer networks for young people with epilepsy.
  • Evaluation of the best training methods for school staff.

Together, we can ensure that children with epilepsy are not left behind in education.