Most children with epilepsy should be able to attend mainstream school and enjoy their education without significant problems, providing there is good communication between family and school.
Although many schools and colleges are understanding and accepting, there are huge regional and country variations around official support. There are also issues about inclusivity for the children and a lack of staff training that have a negative impact on a child’s education and their experience through learning.
A survey by the Young Epilepsy charity found that only 51% of school staff had been trained to support a young person with epilepsy. It also reported that 18% of young people with epilepsy were excluded from school activities such as assemblies, sports, after school clubs and trips.1
The result can hamper both educational achievement and social integration, a report by the World Health Organisation’s Global Campaign Against Epilepsy warned. It stated: “Young people with epilepsy experience a real struggle in negotiating educational systems and work opportunities. The barriers that keep them back must be identified, in consultation with the medical profession at an early stage.”2
Experts agree that a good education for a child with epilepsy needs the synergy of parental involvement and a positive approach from the school. Teachers need to feel comfortable dealing with seizures, even prolonged ones, and handling epileptic medication, for which they will need official training.
Children with epilepsy are an educationally vulnerable group and both education and health staff need to be aware of the additional support that many of these children require at all stages of education.
A report emphasized that epilepsy can profoundly affect the student-patient, the school, and the home, stating: “There is a complex interplay between learning ability and epilepsy, which can result in a greater risk of children with epilepsy being misunderstood and excluded and of being denied equal opportunities for learning and development of their full potential,” a report stated.3
Tips for parents
The school needs to know about your child’s epilepsy and it is advisable to reach out to the school head and maintain contact with their group or class teacher, and any staff involved in the wellbeing of pupils. It is an opportunity to help them with information about your child’s seizures and what support they need and to answer any of their questions.
Understanding what happens is vital for teachers to feel comfortable with dealing with a seizure and explaining it to classmates in a calm, informed manner. It will also allow them to consider, and avoid, any seizure triggers.
Keep them updated
Keep the school up-to-date with detailed information about your child’s epilepsy and needs. This is especially important if there are any changes in their condition or treatment
Make sure that the school are easily able to contact you, or the family doctor, in an emergency.
If your doctor has prescribed a rescue medication in case of a seizure, make sure the school staff receives proper training on how to administer.
Involve your Child
Make sure your child is aware of events or conditions that could be triggers to a seizure and give them the knowledge and confidence to talk to teachers and other children.
It is important to involve them in the process so they know that teachers and staff are aware of their epilepsy and what to do. The age of the child will dictate the level of information you can share and how much you can involve them in meetings with the school but children need to be included so they don’t feel decisions are taken without them or that any shame attaches to their condition.
Know Your Rights
Official support from government and education authorities is available but the type and level of help varies across schools, local areas and nationalities. It is worthwhile research what support your family is entitled to and regional patient groups are helpful.
Resources are available to support you and the school but they may not be obvious so it is important to discover your entitlements as they are there to make the schooling journey as smooth as possible.
- Young Epilepsy. Epilepsy Support in Schools. October 2017. Accessed January 2021. https://youngepilepsy.org.uk/images/Epilepsy_support_in_schools_report_-_Oct_17.pdf
- Cross JH. Epilepsy in the WHO European region: fostering epilepsy care in Europe. Epilepsia. 2011;52(1):187-188. doi:10.1111/j.1528-1167.2010.02903.x
- Marshall RM, Cupoli JM. Epilepsy and education: the pediatrician’s expanding role. Adv Pediatr. 1986;33:159-180.