A young girl is looking at her mobile phone, looking sombre.

Our Digital Projects

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

A young person concentrating on his mobile phone with headphones around his neck.

Get involved

We are now offering wider access to the free My Epilepsy tool.

After registering, we will email you the instructions to sign on and start using My Epilepsy. All we ask is that you give us your honest feedback about your use and how you’re finding it, when we contact you. 

Try My Epilepsy

We listened...

Feedback from our pilot showed that young people wanted an actual app as a self management tool, so we have now also partnered with Tiny Medical Apps. They're looking to create an epilepsy specific area on their Digital Health Passport - a free self-management app for children and young people with complex health conditions and their families. 

Working with NIHR CYPMed Tech and The Caribbean and African Health Network, the project is currently running workshops with young people with epilepsy and their parents/carers to ensure diverse voices are included in creating this exciting new app.  

Watch this space for more news.