We exist to improve the lives
of everyone affected by epilepsy

Media volunteer agreement

Why be a media volunteer?

Here at Epilepsy Action we get a number of requests from the media, who wish to interview people with epilepsy who have a story to tell.

These stories are a powerful way to convey what it is like to live with epilepsy. They are a good way to raise awareness and educate people about epilepsy and our services. They can also help to break down stigma and help other people with epilepsy and their families realise they are not alone.

Thank you for showing an interest in becoming an Epilepsy Action media volunteer.

This form has two sections. The first covers your contact information and your personal story and the second is the data protection agreement.

Your personal details

Please provide give their name and date of birth:

Address line one
Address line two

By supplying your details above you are agreeing to be contacted by these methods in connection with being a media volunteer.

Please tell us about your medical history so we know more about how your epilepsy affects you.

Below are some questions to give you an idea of the kind of information we would find useful.

  • When did you first develop epilepsy? When were you diagnosed?
  • What type of epilepsy do you have? What are your seizures like?
  • How often do you have seizures, or how long have you been seizure-free?
  • What are the triggers for your seizures?
  • Do you take epilepsy medicines?
  • Have you had any other types of treatments and how did they work out for you?

Please tell us about the impact epilepsy has had on your life.

You might want to talk about how it’s affected your health, employment or education. Again we have listed some questions to help guide you.

  • How has epilepsy impacted on your life?
  • Are there any barriers you have had to overcome?
  • Are there any achievements you are particularly proud of?
  • Are there any issues you feel passionately about?
  • Have you had any particularly positive or negative experiences?
  • Has Epilepsy Action helped you in any way, such as through a branch or its helpline? Please give details.

Requests from the media can come through at short notice, with a tight deadline. This means we will usually try to contact you by phone, probably on week days between 9am and 5pm. If we are unable to contact you, please tell us if we can leave a message for you, either on your answer phone or with another person answering the phone. (Please tick Yes or No below).

Please note that the information you have provided us with will be held on file so that we are able to match your story to requests from journalists. If we think your story is suitable for a journalist’s requirements, we will contact you to discuss the request. We will not pass your contact details to a journalist without speaking to you first. Please also bear in mind that it may be some time before you hear from us with a suitable opportunity.


I confirm that the information on this form is correct and I am happy for it to be processed in accordance with Epilepsy Action policy. I understand that if I am appointed as a volunteer, this application will become part of my volunteer record with Epilepsy Action.

If you are completing this form on behalf of someone under 16 please complete the details below.

As parent/guardian/carer of:

Data Protection agreement – media volunteer

Thank you for your interest in being a media volunteer for Epilepsy Action. Please read this section on how we will use your personal information and how you will help us keep our records up to date. Please sign the bottom of this form. This meets the terms of the Data Protection Act 1998.

  1. We promise to keep this information securely and to use it only for the benefit of Epilepsy Action and people with epilepsy. You can ask us to delete the information we hold about you at any time. If you do want your information to be removed, your name, area and telephone number will be kept so we know not to contact you for media volunteer work in the future.
  2. If at any time you want to be removed from our records, you will contact us to let us know.
  3. The information you provide to Epilepsy Action will be used for the benefit of people with epilepsy and the charity.
    3.a Your name and contact information will only be given to third parties with your consent.We may use your story anonymously, without linking it to you, at any time. If we want to use your story or information about you in a way that may identify you, for example by printing your name, we will contact you first.
  4. Your details will be held on file until we get a request from a journalist. If we think your story is suitable for the journalist’s requirements, we will contact you to discuss the request. It may be a while before you hear from us to discuss a relevant media opportunity. Please also bear in mind that once information has been published it becomes publicly available. It may then be picked up and used in other media without Epilepsy Action’s consent. Epilepsy Action has no control over this.
  5. You make a commitment to keeping us updated with the information on this form. This helps us to work with you more efficiently.
  6. Epilepsy Action will always try to provide you with copies of, or information on, the results of your media volunteer work.

Your contact, your way

We'd love to keep you informed about our work and ways you can support our vision of a brighter future for everyone affected by epilepsy.

This may include contact about epilepsy-related products and services from Epilepsy Action's trading company. Neither Epilepsy Action nor its trading company will swap, sell or share your details with any other party. You can read our privacy policy at epilepsy.org.uk/privacy

Please tell us how you'd prefer to hear from Epilepsy Action by choosing one option for each method of communication: