Press office

Epilepsy Action’s press office provides expert comment on epilepsy issues, spokespeople and case studies.

Woman wearing headphones using a microphone and notepad

Epilepsy Action’s press office can provide you with:

  • Expert comment on epilepsy issues
  • Epilepsy Action spokespeople
  • Radio interviews on our in-house ISDN line
  • Case studies

Contact the press office

The press office is available to respond to media enquiries on 0113 210 8870 or via email at press@epilepsy.org.uk.

Follow us on Twitter @epilepsycomms.

Out of office hours

Please call 07823 558 569 to speak to a member of our on-call PR team.

All other enquiries

Please call the general number on 0113 210 8800 or the Epilepsy Action helpline on freephone 0808 800 5050 or email helpline@epilepsy.org.uk.

Student enquiries

For background information and resources, try accessing our website, e-learning materials, YouTube, social media, and the epilepsy facts below. If you are still unable to find what you’re looking for, contact us at press@epilepsy.org.uk.

  • Epilepsy facts
    • There are 630,000 people with epilepsy living in the UK. That’s a similar figure to people living with autism. And four times higher than those living with Parkinsons.
    • Epilepsy is a serious neurological condition that can affect anyone, at any age and from any walk of life.
      Epilepsy affects around one in every 100 people in the UK. Every day, 80 people are diagnosed.
    • Deaths in people with epilepsy have increased by 70% and people with the condition now die on average eight years earlier than the rest of the population, according to figures from Public Health England (PHE), published in February 2018.
    • PHE also found that people with epilepsy are three times more likely to die from their condition if they live in a deprived area.
    • Photosensitive epilepsy affects 3-5% of people with epilepsy. In this type of epilepsy, seizures are triggered by flashing or flickering lights, or some patterns.

    More epilepsy facts, terminology and myths

  • Case studies

    We have a range of people willing to share their experiences of epilepsy from across the UK.

    Contact the press team on press@epilepsy.org.uk for more details and we’ll aim to find you a case study within 24 hours.

  • Epilepsy Action ambassadors

    Our celebrity ambassadors work with us to raise public awareness and share their own stories of how epilepsy has affected their lives.

  • Suggested terminology

    Feedback from people with epilepsy suggests the following as more positive or preferred ways of referring to the condition.

    Please feel free to ask us for further guidance.

    • ‘Illness’: epilepsy is a condition, not an illness.
    • ‘Fit’: the term ‘seizure’ or ‘epileptic seizure’ is preferred by many people. However, some people with epilepsy still choose to use the word ‘fit’.
    • An ‘epileptic’: it is important to look at the person before the medical condition, therefore it is more helpful to say ‘a person with epilepsy’.
    • A ‘victim, sufferer’: this implies someone is helpless.
    • Grand Mal or Petit Mal are terms previously used to describe seizure types, and have now been replaced in medical terminology.
Share your story!

Become a story champion

We’re always looking for people willing to share their story about living with epilepsy.

Sharing your experience can help to raise awareness, break down stigma and education people about epilepsy

Get in touch