Since 2014 state schools in England have been legally required to support children with medical conditions such as epilepsy to ensure they can participate in all aspects of education.
Young Epilepsy conducted an online survey of young people with epilepsy and their parents and carers to find out whether schools are providing support that complies with Government standards.
At Young Epilepsy, we believe every child with epilepsy deserves to feel safe, supported, and included in school. Our 2019 survey of young people with epilepsy and their families revealed serious gaps in how schools are meeting their legal responsibilities.
Key Findings
Individual Healthcare Plans (IHPs)
- 1 in 3 children with epilepsy do not have an IHP in place.
- Only 39% of IHPs include how epilepsy affects learning.
- Some schools wrongly believe IHPs aren’t needed if a child doesn’t take medication or is older.
Medical Conditions Policies
- Only 61% of families said their school had a medical conditions policy.
- 36% didn’t know if one existed, despite government guidance requiring it to be accessible.
Staff Training
- Only 50% of families said staff had been trained to support a child with epilepsy.
- Concerns included:
- Lack of seizure first aid knowledge
- Misunderstanding of seizure types
- Failure to recognise how epilepsy and medication affect learning and behaviour
Exclusion from Activities
- 17% of children with epilepsy are excluded from school activities.
- Exclusions include:
- PE, swimming, school trips, playground access, after-school clubs
- Often, exclusion is due to lack of staff training or fear, not medical necessity.
Parental Confidence
- 1 in 3 parents are not confident their child receives the support needed to fully participate in school life.
- Issues include:
- Medication errors
- Misinterpretation of behaviour linked to seizures
- Lack of understanding of epilepsy’s impact on learning and wellbeing
Positive Examples
Some schools are getting it right:
- Proactive care planning and regular updates
- Buddy systems and pastoral support
- Staff training and open communication with families
Young Epilepsy’s Call to Action
We’re campaigning for:
- Mandatory IHPs for all students with epilepsy
- Clear, published medical conditions policies
- Staff training on epilepsy and its impact
- School inspections to check support for medical needs