An Alliance and a DUP politician have pledged to continue to work together to raise awareness on epilepsy after Belfast City Council held a groundbreaking event to support those living with the condition.
Northern Ireland has the highest rate of epilepsy in the UK.
Alliance’s Michael Long, who was diagnosed with the condition following a massive seizure in 2024, joined forces with the DUP’s Sammy Douglas, whose wife Gillian has lived with it for 47 years.
They attended the council’s first webinar to mark International Epilepsy Day in City Hall. Both councillors said it was vital to raise awareness among their colleagues and council staff.
Mr Long said: “People must know how to respond if someone has a seizure in a leisure centre, a park, or any other public space.
“Some 25 staff members attended the webinar. I learned things I didn’t know. Not everybody has the same type of epilepsy.
“There are 20 different types: some are so mild they’re barely noticeable, and others are of the shaking variety. We learned that medication can cause exhaustion which makes sense of what I’ve been experiencing.”
Mr Long was shocked by some statistics disclosed.
“People with epilepsy are more than twice as likely not to work as those without the condition,” he said.
“Only 33% of those with epilepsy are in employment compared to 70% of the general population. Clearly, they feel they’re unable to work, or support for them at work isn’t there, or they’re suffering discrimination. It’s something we must try to change.”
Mr Douglas’s wife had her first seizure in 1979, when she was 21.
“It was 3am, we were asleep and suddenly Gillian started shaking violently. I’d no idea what was happening. I thought it was maybe a brain haemorrhage,” he recalled.
“I was scared out of my wits and didn’t know what to do. Gillian was very confused. She had bitten her tongue and blood was pouring from her mouth. I phoned an ambulance and she was taken to the Royal.”
Mr Douglas added: “I wish something like this webinar had been available back then, but, unfortunately, there was nothing like it in those days.
“In the presentation, we learnt that a fit will normally last one to two minutes. Sometimes it can go on for five minutes. If it goes beyond that, or if someone takes a second fit, which is very dangerous, then you must ring an ambulance.”
“It’s scary watching people having a seizure, but don’t run away. Stay, comfort and reassure them.”
He said it was “an eye-opener” to learn that one in 10 people will suffer a seizure at some stage in their life.
Belfast Lord Mayor Tracy Kelly said: “I was delighted to attend this event with councillors and employees to highlight the importance of promoting inclusivity, education and support for people living with epilepsy, and their families.
“The webinar was delivered by Epilepsy Action and focused on raising awareness of epilepsy, reducing stigma and improving understanding of the condition within communities.”
Mr Long suffered a seizure two years ago when he was sitting at home with his wife, Alliance leader Naomi Long.
“Thankfully, I’ve had no further seizures,” he said.
“I’m told to avoid stress, but that’s not always possible on Belfast City Council.”
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