As a young person, finding information about your epilepsy can be a daunting task. A lot of epilepsy health information may not reflect your experience, some of it can make you feel hopeless, and it is often difficult to understand all the medical terms.
At Young Epilepsy, we put children and young people at the heart of our processes when we create and share health information. With your input, we can ensure that the information isn’t only up-to-date and expertly researched, but easy to understand and relevant for children and young people.
It is our mission to help people like you find what you need in a moment of crisis, concern or simply curiosity.
Listening first
Whether we are presenting standard health information such as diagnosis and treatment, or sensitive information about topics like mental health and sudden unexpected death in epilepsy, SUDEP, we start by going to the children and young people with epilepsy in our network.
Online, social media and email surveys help us to better understand how young people are accessing our health information. We then meet with a dedicated group of Youth Voice Network members that helps deepen our understanding of what is most relevant.
After these sessions, we then have co-creation sessions to establish the best ways to present health information across our site.
We listen to and apply suggestions from young people in our Youth Support sessions throughout the process.
Language that connects
The main problems young people have with health information available is how complicated and impersonal a lot of it can be. That's why we write our health information to be clear and uplifting, while still being comprehensive, based on the latest evidence, and up-to-date.
Maintaining our positive tone and outlook does not mean we compromise on honesty. We know the impact that seizures, medication, and stigma can have on young people with epilepsy and won’t downplay their risks.
However, our health information comes with a promise of support and a community that understands. Youth Clubs and the Channel are places you can safely hear from other young people. One-to-one support gives you an expert to guide you.
Real voices, real impact
Involving young people throughout the creation of our health information makes it practical and relevant.
Our seizure films, for example, are an excellent tool for understanding how to help someone having a certain type of seizure. The scripts were taken directly from our community and young people were heavily involved in the production.
Your input, about how many seizure types are misunderstood and how others need to listen to how you want to be supported, helped make these films a success and led to improvements across our seizure pages.
The Channel is another great example, providing a community of information for young people, by young people.
Why it matters
At Young Epilepsy, children and young people are at the heart of everything we do. We know that providing expert health information is not enough, and that we need it to represent the experience and voices of the young people we serve.
Our mission ensures health information isn’t just accurate but also accessible and meaningful for those who need it most.
PIF Tick certified information
Presenting our health information for young people with their input ensures it is trustworthy and relevant. Young Epilepsy is a certified member the PIF TICK scheme, the only independently assessed certification for both print and digital health information.
This means UK-wide quality mark that shows our information is:
- based on the latest evidence and up to date
- is checked by epilepsy nurses or doctors
- is accessible and easy to understand
- made in collaboration with young people with epilepsy
