After the completion of our ‘Embedding the Learning’ project, the sequel if you will, to our project in 2023 ‘Understanding the experiences of young people with epilepsy from communities that experience marginalisation’. Young Advisor Beth, part of the Youth Voice Network at Young Epilepsy, shares a little of her experiences with epilepsy and her experiences of being a Young Advisor on this project. Her reflections highlight the key messages from this work for all young people with epilepsy and the staff supporting them as well as the importance of projects like this for the young people involved – thank you Beth!
Hi, My name is Beth I’m a young adult with refractory epilepsy. When I’m not taking part in YVN or AYPH projects I love playing wheelchair basketball, racing and DJing – I’m very active and I love being busy!
I got involved with the project as I am very keen to help people and having lived with epilepsy, I know how it can feel and wanted to help ensure others know that they are not alone and do not have to feel excluded.
I experienced feeing excluded when I was 11-12 years old when I wanted to start going to social clubs and football camps etc. I was constantly told I couldn’t because I might ‘get kicked in the head with the ball’, or be affected by the famous ‘flashing lights’ and so much more – those are the comments I remember really well before trying to join one of the first things I ever wanted to do.
Learning about marginalisation helped me realise that there are potentially even more barriers for other young people, and I don’t like the thought of anyone being left out. I joined the project as I wanted to stop people being marginalised due to their race, age, gender, sexual orientation, disability etc. and I hope that this is what will be accomplished in the future from this work.
My highlight of the project was being able to gain confidence to speak up and help in some way or form. I gained enough confidence to speak up in co-production sessions, representing other conversations I’d had in breakout groups. This was a massive achievement for me and I’m glad I got the opportunity to develop this confidence.
It was a great experience and other ways I have found it benefited me directly included:
- Helping me speak in a group
- Gaining confidence in general
- Progressing my listening and active listening skills
- Progressing my ability to work in a team
- Helping my timekeeping, communication and attendance/punctuality
We would like to thank Beth and all the young people who worked with us on this project. All the resources and reports from the work can be found on the RCPCH’s website here The original work can also be found on our website here.
Author: Beth, Young Advisor
July 2025