Inclusion and participation of children with epilepsy in schools

An in-depth study to gain an understanding of the views of children with epilepsy, their parents and staff regarding inclusion and participation of children with epilepsy in school. 

Childhood epilepsy can have very significant negative implications for schooling. A systematic review of teacher knowledge and attitudes revealed deficits in knowledge and negative attitudes were pervasive across all studies. 

School staff often have a negative attitude towards the participation of children with epilepsy in physical activities/sport, and teachers often feel ill-equipped to deal with management of seizures and administration of emergency medication, highlighting the risk that students with epilepsy could be excluded from learning and social opportunities. 

The studies which have compared epilepsy to other chronic medical conditions indicate that not only have school staff limited knowledge of epilepsy but have more negative attitudes towards it.


Supporting Children with Epilepsy in Education

At Young Epilepsy, we believe every child deserves to feel included, supported, and understood in school. This research, part of our “What I Need in School” (WINS) study, explores the experiences of children with epilepsy, their families, and school staff across the UK.


Key Findings

1. School Attendance

  • 41% of parents reported attendance difficulties, mainly due to seizures and hospital appointments.
  • These difficulties impacted:
    • Academic progress
    • Confidence and sense of belonging
  • Parents felt schools could do more to support attendance and better understand epilepsy-related needs.

2. Inclusion and Participation

  • Most children were included in classroom activities, but:
    • Parents were less likely than staff to agree their child was included in playground activities.
    • Parents of children in special schools felt their child was more included than those in mainstream schools.
  • Exclusion was sometimes:
    • Child-led (due to sensory issues or confidence)
    • Staff-led (due to lack of training or perceived risks)
    • Peer-led (bullying or social exclusion)

3. Restrictions and Limitations

  • 63% of children felt restricted in activities compared to peers.
  • Common limitations included:
    • Physical activities (e.g. climbing, swimming)
    • Sleepovers and social events
    • School trips (due to staffing or safety concerns)
  • Parents and staff often lacked clarity on what activities were truly unsafe, leading to unnecessary restrictions.

4. Friendships and Bullying

  • Most children didn’t feel epilepsy affected their friendships.
  • However, 30% of parents believed epilepsy made it harder for their child to make friends.
  • 63% of children reported being bullied, though few linked it directly to epilepsy.
  • Bullying was more often associated with co-occurring behavioural or learning difficulties.

Recommendations

  • Improve epilepsy awareness and seizure management training for school staff.
  • Provide tailored support after absences to help children catch up.
  • Educate peers to reduce stigma and bullying.
  • Ensure children with epilepsy are assessed for additional needs and supported holistically.