An interactive toolkit on prolonged convulsive seizures, created by The Health Policy Partnership (HPP), has been featured on the International Bureau for Epilepsy (IBE) website.
The toolkit and accompanying policy paper were published in October 2017. They focus on improving the management of prolonged convulsive seizures in schools. The IBE was part of an expert group comprising clinical, patient and educational experts from across Europe, who supported HPP to create the toolkit and paper.
Unlike most other seizures, prolonged convulsive seizures do not stop on their own. Emergency medication is necessary to prevent progression to a potentially life-threatening situation. But many schools do not have appropriate policies to ensure children can receive such medication safely and quickly. Delays in administering medication may lead to severe health risks.
Children with epilepsy may face stigma and social exclusion, owing to a lack of understanding of the condition. Those who experience prolonged convulsive seizures may be at particular risk of discrimination.
The needs of this vulnerable group of children with epilepsy have so far received little attention from policymakers. The toolkit HPP has created provides a practical resource to advocate for better social inclusion, awareness, individualised healthcare plans, national guidance and school policies. It is aimed at parents, but may also be used by patient organisations in their advocacy efforts.
The project was initiated and funded by Shire. The expert group had full editorial control over the content.