We’ve been working with 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 for young people and their families run using Patients Know Best’s (PKB’s) Personal Health Record platform.
We piloted My Epilepsy with young people and their families in 2023, listened to their feedback and made improvements to the platform in 2024.
It allowed patients to track seizures, medication, appointments, symptoms and so much more, all in one single, secure and simple place that can easily be accessed via your NHS log-in on your mobile, tablet, or laptop.
Although Young Epilepsy are no longer collaborating with PKB on further developments to this platform, those with access can still use this tool and its functions.
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
