Someone could die due to NHS scandal says Horncastle epileptic

Andrew Jackson EMN-140306-094940001
Andrew Jackson EMN-140306-094940001

A Horncastle man fears someone will die from epilepsy locally and slammed the NHS’s response to the illness as “a scandal”.

Anthony Jackson, of Low Toynton Road, is calling for a campaign to improve awareness and standards of treatment.

Mr Jackson, who was diagnosed with epilepsy at the age of two, has started a support group in the Horncastle area.

In an exclusive interview with the News, the father of three revealed a catalogue of failures in the NHS.

He said there are more than 5,000 epileptics in Lincolnshire but no specialist nurses or doctors.

He explained his problem was misdiagnosed at Lincoln County Hospital.

Mr Jackson had to travel to Nottingham on a regular basis and pay for private treatment.

Thanks to that treatment, he has now learned to cope with epilepsy.

Mr Jackson admits hundreds of other people aren’t as fortunate and many “suffer in silence”.

He said: “The fact there is no provision for specialist treatment in Lincolnshire is a scandal.

“If we were talking about cancer or cardiology there would be an outcry, but because it is epilepsy the NHS don’t appear to care. It is not a top priority.

“Epilepsy is a big issue. Nationally, one in ten people suffer from it but there is a stigma attached.

“People don’t like talking about it. They don’t like admitting they’ve got it so they suffer in silence. If we don’t do something, someone could die. It is that serious.”

Mr Jackson highlighted the many problems epileptics encounter, including bullying.

He revealed he was bullied at school in Horncastle because he had to had to wear a cycle helmet to prevent serious injury when he had a seizure.

Mr Jackson, a self employed gardener, said: “My co-ordination was all over the place.

“That - and the cycle helmet - made me an obvious target.

“I know it (bullying) still goes on today but nothing is done.

“We need to be educate people about epilepsy and exactly what is happening when someone has a seizure.”

Mr Jackson explained his bullying stopped when he started martial arts as a teenager. He now has three black belts.

He added that when he was mis-diagnosed at Lincoln, he suffered what could have been a life threatening violent seizure.

After a lengthy stay in hospital, he was treated at Nottingham. He paid £160 for one hour sessions. NHS patients are allocated ten minutes.

He said: “The treatment I got was brilliant. They put me on the right tablets. It took two years but I’m living a normal life. I wouldn’t want to go back to Lincoln.”

Mr Jackson says the NHS has gone back on promises to hold meetings to discuss the lack of specialist care.

He is full of praise for the support of Horncastle MP Sir Peter Tapsell.

Dr Aleksandra Kirjazovas, Lead Consultant Neurologist at United Lincolnshire Hospitals NHS Trust, said: “The Trust is committed to providing high-quality, accessible services for patients with epilepsy. In the last 2 years we have set up a dedicated, specialist led weekly “First Fit ” clinic at Lincoln County Hospital.

“GPs and Hospital doctors can directly refer patients who have a first or suspected first seizure. We want to see patients quickly for this initial clinic and the current waiting times are 3 to 4 weeks from referral.

“Patients admitted with seizures are regularly seen on wards by consultant neurologists to advise as to investigations, diagnose and treatment with further management plans for outpatient and community settings.

“We are continuously looking to improve our services. Our Neurology department is led by two consultant neurologists, one of whom - Dr Carlo Solinas – has specialist interest in epilepsy. We are currently recruiting a third consultant. Dr C Solinas and I have developed protocols and pathways on how to care for epilepsy patients for other doctors in the Trust when epilepsy patients are being treated. We also work with specialist centres in Sheffield and Nottingham.”

“We need to be educate people about epilepsy and exactly what is happening when someone has a seizure.”