"Epileptic services in Inverness are just a joke"

WAKING up in the morning can be a painful experience for Cara Cameron — sometimes her muscles ache and she feels exhausted.

That is when she realises she has had a fit in her sleep.

Ms Cameron has had epilepsy, a condition which effects the brain and causes repeated seizures since the age of 15.

"At the time when I was diagnosed in 1985 you just didn’t tell people," said the 41-year-old. "Then, when people at school finally found out they picked on me something chronic. I started bunking off school which was a shame as I was in the top 10 per cent."

As well as having nocturnal epilepsy, which is when seizures occur during the night, Ms Cameron, of Bremner Gardens, Smithton, also suffers from absence seizures, which can happen during the day or night and cause a person to lose awareness of their surroundings for up to 20 seconds, often characterized by the person staring into space.

She was also diagnosed with a brain tumour in her 20s which was successfully operated on. "My family were supportive," she continued. "When I was first diagnosed I was very embarrassed but it was my mother who used to say if somebody has a problem then it’s their problem not your problem.

"The fact is there is always someone worse off than yourself."

Upon leaving Inverness High School, Ms Cameron took up a secretarial job but said it was hard work convincing employers that despite having epilepsy, she was no different than anyone else.

"When I was younger I was going for jobs and I couldn’t get interviews," she said.

"I decided to take off my CV that I had epilepsy and I started getting interviews. Then when I was at interviews, I told them I had epilepsy and they would back off."

One employer who did not discriminate against Ms Cameron was Harry Gows bakery.

"When I went in for interview with Harry Gow and I told him he said: ‘Okay, we’ll give it a try’ and I was there for 14 years," said Ms

Cameron.

It was during her time at the bakery that Ms Cameron had her first and only fit during the day.

"I don’t remember the fits," she said. "But I can remember a girl being really upset when I came round."

Living with epilepsy, she added, is a challenge. Feeling stressed out or tired tends to bring on the fits and although she can enjoy one glass of wine with a meal, any more alcohol can bring one on.

And as a precaution, she is not allowed to have a bath, use a gas hob for cooking or a coal fire in case she has a fit. The general lack of awareness about epilepsy also poses dangers.

"One time when I was flying back from Brussels, I took a fit on the plane," she explained. "The crew knew I had epilepsy and they re-directed to Amsterdam and off loaded me. I phoned my mother on her mobile and she asked me where I was and I didn’t know because I was confused. She told me to hand the phone to anyone around and she found out I was in Amsterdam Airport. I think people don’t realise that epilepsy is on par with diabetes in that it can kill you."

Having lived with epilepsy for years, Ms Cameron, who has tried various medications but has still to find one that helps, believes major improvements are needed to the services for people living with the condition.

"Services in Inverness for people with epilepsy are a complete joke, we don’t have the same access to support as in Edinburgh and Glasgow," she said. "If anything happens to you, if you’re not feeling well there is nowhere for you to go or any help. I have a social worker but I’m not her only client and she can’t come round every time I fit."

Although she has been issued with a special help device which she wears around her neck, with a button to press if she feels unwell, Ms Cameron claims paramedics who respond are limited in what they can do.

"You are not deemed unwell enough to go to hospital. If I feel unwell I have to go up to my father’s house but he’s 82. We should have more help than that."

Having experienced feelings of isolation she also believes it would be beneficial if a support group for people with epilepsy was set up in the area, so people could share experiences.

Epilepsy explained

Epilepsy affects around 456,000 people in the UK — about 1 in 130 people.

It usually begins during childhood, although it can start at any age. Cells in the brain, known as neurons, communicate with each other with electrical impulses. During a seizure, the electrical impulses are disrupted, which can cause the brain and body to behave strangely.

The severity of a seizure varies from person to person, with some experiencing a trance-like state for a few seconds or minutes, while others lose consciousness and have uncontrollable convulsions.

Epilepsy Scotland has a free helpline for anyone looking for support or information. telephone 0808 800 2200, text 07786 209 501 or e-mail enquiries@epilepsyscotland.org.uk.