At Young Epilepsy, we wanted to understand how well schools in England are supporting children with epilepsy. We surveyed 373 families and young people in state schools to see if schools are meeting legal requirements.
Medical Conditions Policies
- Less than half (45%) of families said their school had a medical conditions policy.
- Nearly half (49%) didn’t know if one existed.
- One parent told us:
I’ve never been given any information about how the school supports pupils with epilepsy.
- Another said:
It seems a policy is in place but not enforced or followed.
Individual Healthcare Plans (IHPs)
- 1 in 3 young people with epilepsy (36%) still don’t have an IHP.
- Even when IHPs exist:
- 16% don’t include medication details.
- 11% don’t explain what to do in an emergency.
- 67% don’t mention how epilepsy affects learning.
- Parents shared their struggles:
We had to dig our heels in to get an IHP.
- Another said:
Staff had not been trained in seizure first aid … this horrified me.
Staff Training
- Only 51% of families said staff had received epilepsy training.
- Training often came from parents or epilepsy nurses.
- Some staff lacked confidence or misunderstood seizure types.
- One parent noted:
They send her home for enlarged pupils—one of 20 seizure symptoms.
Exclusion from Activities
- 18% of young people with epilepsy were excluded from activities like sports, trips, and clubs.
- Some schools showed great inclusion:
She’s been on ski trips and zip wires.
- Others lacked support:
I attend all trips because the school can’t provide help.
Transport and EHCPs
- 17% of families had concerns about school transport; this rose to 34% for secondary pupils.
- 1 in 4 young people had an Education, Health and Care Plan (EHCP), but many families struggled to get one.
What We’re Calling For
We’re campaigning for:
- Every child with epilepsy to have an IHP
- Schools to publish medical policies online
- School inspections to check support for medical conditions
