Being chucked off a bus for ‘being drunk’ is just one of the experiences of 51-year-old Nikki Garrard, who has epilepsy, has had to deal with.
The Epilepsy Action volunteer is campaigning for better awareness across the UK and Europe of the condition urging people not to ring 999 every time they have a seizure.
“I was chucked off a bus once because the driver thought I was drunk when I was having a fit,” said Mrs Garrard from Davidson Close in Great Cornard.
“If someone misunderstands it and they get bad treatment then that is when things can go wrong. All we want is for people to understand properly. To make sure people get good treatment.”
Last week Labour Euro MP for Suffolk Richard Howitt met Mrs Garrard to discuss the issues to take back his findings to share with other countries, including the lack of knowledge on what to do when someone has a seizure.
Mrs Garrard said that all too often people immediately call 999 out of panic and lack of knowledge.
“The amount of times I have come out of a seizure and there’s and ambulance there that could have gone to a real emergency.
“There are only three reasons you need to call an ambulance. If the seizure lasts longer than five minutes, if there is no ID on the person as all people with epilepsy should have ID explaining this, and if they are harming themselves.”
Mrs Garrard offers talks to groups, organisations and work places on what to do when somebody has a seizure.
Unlike with asthma attacks and strokes, she feels there is a lack of public knowledge.
As a small charity Epilepsy Action is unable to afford expensive television adverts, while information is not passed on in schools to the same extent as other conditions.
Mrs Garrard also believes care and facilities for those with epilepsy in Suffolk is substandard.
“We need public awareness to make people aware we exist and what to do when we have a seizure,” she said. “We hear a lot about strokes etc,but how much do you hear about epilepsy?”
Mrs Garrard added that it should be ‘people with epilepsy’, not ‘epilepsy sufferers’.
“It doesn’t have to be a big deal if you know how to work with it,” she said. “It is not an issue in the workplace.”
Mr Howitt said: “There is a huge stigma surrounding epilepsy and there is a vast amount of uncertainly when it comes to dealing with a seizure.
“Only by raising awareness can we ensure that those who suffer are not victimised.
“But only through working with our European partners can we plough enough money into research and prevention so one day we can ensure less people suffer with their illness.”
Epilepsy Action has relaunched its West Suffolk group which meets in Bury St Edmunds on the first Saturday of each month.
Meetings take place at the Quaker Meeting House in St John’s Street, 1.45pm-3.15pm. There is a free workshop at the Meeting House on February 6, from 1.45pm-4.30pm.
For more information or to book a place call 01132 108885.