Epilepsy patients in west Wales waiting 18 months to see a neurologist, charity says

People with epilepsy in west Wales are being left without local treatment or support, a charity says.

Epilepsy Action Wales said patients were having to wait up to 18 months to see a neurologist.

The charity has called on the Hywel Dda University Health Board to immediately appoint a specialist epilepsy nurse.

Elaine Edwards, from Carmarthen, said she had never been offered local treatment in the 20 years she has had epilepsy.

"In those early days, when I wasn't allowed to drive, I had to depend on someone else to take me. If there was something local, I could have kept more of my independence," she said.

She said having local specialist support would have made a huge difference when she was learning to live with the condition.

"It made living every day extremely difficult. I didn't understand what was going on. I was working but some days that was impossible.

"I had sleep seizures as well so I had the fear of going to sleep at night, because I knew very often that things would happen in my sleep."

Ms Edwards has recently been offered an appointment to see a specialist in Swansea but nothing in her local health board area.

There are currently two part-time epilepsy specialist nurses in the Hywel Dda health board area.

Epilepsy Action Wales's manager Jan Paterson said there was an urgent need for more.

"Numerous patients have told us they were falling behind with services and that patients under the Hywel Dda area haven't received any services for the past 12 months.

"We also understand people with epilepsy are waiting up to 18 months to see a neurologist, so they're living in a dire situation which is then causing their epilepsy to get a lot worse because of the strain and stress they're under."

"It's very clear from the patients themselves that they haven't had any information or support from Hywel Dda," she said.

In a statement, director of nursing Mandy Rayani said: "The health board is taking steps to review the current access to neurology services and the capacity available within the specialist epilepsy nursing resource to meet the needs of our resident population.

"The health board has recently appointed an additional epilepsy specialist nurse within our paediatric services.

"We additionally have a new consultant working from Withybush General Hospital to review new patient referrals."

BBC Wales also asked the health board to confirm waiting times for people with epilepsy, but it did not provide the information.

Epilepsy Action Wales said there were 32,000 people with epilepsy in Wales and only nine adult epilepsy specialist nurses - making an average patient load of 3,500 per nurse.

It said the current recommended limit was 300 patients per nurse.

Elaine Edwards said people in west Wales were losing out and not getting the best treatment or support because of where they lived.

She thinks an extra nurse in her area would help ease other pressures on the system.

"It's crucial and it would be an important investment because it would free up the consultant to deal with more complex cases.

"I'm lucky to have it under control but I still have challenges because of things like medication.

"I could pick up the phone to a local specialist nurse and maybe build up that relationship and not have to have an appointment with a consultant," she said.