Childhood epilepsy

The needs of children with epilepsy who experience prolonged convulsive seizures have been neglected – but these children may be at serious risk without effective treatment.

Context

Epilepsy is one of the most common neurological conditions in children, yet it remains poorly understood. As a result, children with epilepsy are at risk of stigma and discrimination. The needs of this group of children have, until now, been poorly addressed.

A small group of children with epilepsy who may be particularly vulnerable to discrimination are those who experience prolonged convulsive seizures.

Unlike most seizures, prolonged convulsive seizures are unlikely to stop without emergency medication. But many schools are not aware of what to do if a child has a prolonged convulsive seizure, and may lack adequate policies to manage such an emergency.

%

Approximately 30% of children with epilepsy have seizures despite taking medication

%

Approximately 50% of teachers surveyed in European countries knew what to do if a child had a seizure

What we achieved

We worked with epilepsy patient and parent representatives, educational and clinical experts to develop a policy paper and an advocacy toolkit to help improve the management of prolonged convulsive seizures in schools.

The policy paper makes recommendations for national governments, schools and healthcare professionals. The toolkit provides a practical resource for parents to aid them to advocate for better social inclusion, awareness, individualised healthcare plans, national guidance and school policies to support children who have prolonged convulsive seizures.

The toolkit is hosted on the International Bureau for Epilepsy website, and was translated into Italian for dissemination by the Federazione Italiana Epilessie. One of the report’s authors, Professor Olena Shyyan, presented the work at the Association for Teacher Education in Europe conference in October 2017.

Key partners and stakeholders

  • International Bureau for Epilepsy
  • Federazione Italiana Epilessie, Italy
  • Fondation Française pour la Recherché sur l’Épilepsie, France

 

  • Epilepsy Ireland
  • Association for Teacher Education in Europe

The project was initiated and funded by Shire.