We’re currently working with two partner organisations to develop and test digital tools to support young people and their families to self-manage their epilepsy. Your views and opinions are vital in ensuring that these tools meet your needs.
My Epilepsy is a web-based epilepsy specific self-management tool using Patients Know Best’s (PKB) Personal Health Record platform currently used by nearly 4 million patients. Track seizures, medication, appointments, symptoms and so much more, all in one single, secure and simple place that you can easily access via your NHS log-in on your mobile, tablet, or laptop.
We piloted My Epilepsy with young people and their families in 2023, listened to their feedback and have made improvements.
Confidence in my seizure management, being able to take control and be responsible with the option of sharing to family. Appointment and symptom tracker so I don’t freeze when they ask me because I easily track it.
Young person, pilot participant