The Big Epilepsy Consultation – Let’s make Epilepsy Action work for everyone

Published: June 04 2025
Last updated: June 03 2025

Kami Kountcheva | Epilepsy Action is launching a new survey to hear from everyone affected by epilepsy what they want from the Epilepsy Action community.

abstract image of pink and black ink flowingThis week, Epilepsy Action is launching a new consultation to understand more about what the epilepsy community needs – and we want to hear from you!

This survey from Epilepsy Action follows on from our survey earlier in the year. It will help us reimagine what being a part of the Epilepsy Action community really means.

We want to know: What does meaningful membership look like to you? How can we better connect with, support and represent you? What would make you feel proud to be part of Epilepsy Action?

The survey takes less than 10 minutes to complete and responses will remain anonymous. However, if you choose to leave your details at the end of the survey, you’ll be entered into a prize draw to win a £100 voucher or a donation to a charity of your choice.

 

“Your views matter”

Rebekah Smith, Epilepsy Action Chief Executive Officer (CEO)Rebekah Smith, chief executive of Epilepsy Action, said: “We are committed to improving the lives of everyone affected by epilepsy through support, campaigning and research. But to continue delivering the most relevant services and resources, we need your insight.

“Earlier this year, we asked you to share your views – and you responded brilliantly. Thanks to your honest feedback, we’ve already started work on improving how Epilepsy Action supports its members, volunteers, and wider community. Now we’re back with part two of that conversation.

“This new survey is designed to shine a light on your experience – whether you live with epilepsy, support someone who does, or care about making change happen.

“We want to hear from you, whether you’re a current or past member, a donor, a volunteer or someone new to Epilepsy Action. Your views matter to us.

“We want to understand what’s working, what isn’t, and what’s missing altogether — especially from people we might not usually hear from. That includes those who’ve never connected with Epilepsy Action before, or who saw previous surveys and thought, ‘That’s not for me.’

“So, if you’ve ever felt unsure about getting involved, or didn’t feel like the conversation included you before — this is the moment to change that.

“This is your opportunity to share you challenges and priorities, and shape the future direction of our work to ensure our membership reflects your needs, values and priorities.

“Your feedback will inform how Epilepsy Action develops its work and connects with the community.

“Your insight will help us build a membership that inspires action, amplifies voices and makes everyone feel part of the Epilepsy Action community.”

Independent research agency Membership Matters is carrying out this consultation for Epilepsy Action.

You can take the Big Epilepsy Consultation survey now!