York woman calls for more understanding of epilepsy

It's after a survey found more than half of people have been accused of being drunk or on drugs following a seizure

Published 24th May 2023

A York woman is calling for more awareness of epilepsy. It's after a report found over 50% of people with the condition in the UK have avoided public places due to the fear of having a seizure and experiencing stigma and misunderstanding. According to Epilepsy Action 47% of people have been accused of being drunk or on drugs after having a seizure in public.

Lauren Terry is from York and was diagnosed with the condition when she was 10 and says often people mistake an epileptic fit for being drunk: "Automatically when you are a teenager, especially if you are out drinking or partying, people automatically jump to a conclusion, what has she taken?"

"People don't realise that alcohol can be a trigger, that doesn't mean that we've been downing shots like nobody's business and are absolutely hammered and things like that, it can mean we've had one drink, we were tired anyway and then something has happened that has caused a seizure of brought a seizure on."

She also says members of the public often overreact if they see someone having a seizure: "They say things like you must lie down, you musn't do this, you mustn't do that, I've come around with somebody's fingers in my mouth that I don't know, because they think this thing about swallowing your tongue. I appreciate you are trying to help me out here, but you are making this into a much bigger drama."

Epilepsy Action campaign

The charity has launched its CARE acroynm and free posters to create a more supportive environment for people with epilepsy in public space as it is revealed fears lead people with epilepsy to avoid social interaction.

Its research showed:

• Over 50% of people with epilepsy in the UK have avoided public places due to the fear of having a seizure and experiencing stigma and misunderstanding.

• 47% of people with epilepsy have been accused of being drunk or on drugs after having a seizure in public.

• 8% of people with epilepsy have been robbed, and 7% have been physically assaulted while having a seizure in public. 10% search social to see if videos or comments exist.

• Over 90% of people with epilepsy believe that public spaces do not do enough to help or make people aware of what they should do if someone has a seizure in public.

Today, Epilepsy Action is launching the CARE acronym to teach the key things we need to know and do when it comes to looking after someone having a seizure in public.

C – Comfort

Cushion their head with something soft to protect them from injury

A – Action

Start to time the seizure, and clear the area of anything that might be harmful. You could also check if the person has a medical ID or bracelet with more information on how to help

R – Reassure

After the seizure stops, put the person in the recovery position and reassure them as they come round

E – Emergency

Call 999 if the person:

  • has a seizure lasting longer than 5 minutes
  • is not regaining consciousness
  • goes straight into another seizure
  • has trouble breathing after the seizure stops
  • has never had a seizure before

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