East Ayrshire woman with epilepsy raising awareness after abuse

Jacqui Kiltie says she's scared to go outside

Epilepsy Screening
Author: Kieran BrandPublished 25th May 2023

A Newmilns woman is calling for more awareness of epilepsy after facing abuse in public.

Jacqui Kiltie was diagnosed in 2017 and has been filmed whilst having a seizure and has had personal belongings stolen.

The 52 year-old is now scared to go out in fear of being abused.

She said: “I don’t know how many times people have accused me of being drunk or on drugs.

If I’m disorientated it takes me a wee while to know why I’m in a place after a seizure so they’re asking me questions and I can’t answer them – so they leave me.

“It’s this loss of dignity, this loss of myself as an educated person with a whole life behind me and to be treated like that, it’s quite shameful.”

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.

That's according to Epilepsy Action, which also found 47% of people have been accused of being drunk or on drugs after having a seizure in public.

Epilepsy Action campaign

The charity has launched its CARE acronym 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.

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

The main findings of the charity’s research are:

• 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.

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