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Last Updated: Sunday, 16 October 2005, 11:52 GMT 12:52 UK
'Epilepsy took away my childhood'
By Jane Elliott
BBC News health reporter

Nicola Howells
Nicola's epilepsy diagnosis was slow

For years Nicola Howells was told her illness was "in her head".

She was just 11 months old when she had her first seizure, but it was another 24 years before doctors finally diagnosed her with epilepsy.

She was sent for psychiatric treatment, told she was suffering from vertigo and panic attacks, and put on anti-depressants.

But it was not until her father died from a hereditary tumour that doctors finally scanned her and diagnosed epilepsy.

And it was nearly two months before she saw a specialist.


"It got to the point that they told me it was all in my head.

"My teenage years and my childhood were stolen from me. If I had been diagnosed younger, I would have come to terms with it more easily and would have learnt to take my medication, but as an adult I felt that my whole world had been rocked.

"They sent me to a child psychiatrist and I was told that it was all in my head. I know so many people who have gone through so many similar scenarios.

It is frightening that it is one of the most serious neurological disorders but people know nothing about it
Nicola Howells

"My mum tried to fight my corner and she is riddled with guilt because when they said it was all in my mind she began to think it was."

Epilepsy experts say Nicola's story is not uncommon. They are calling for more money and expertise to be ploughed into the UK's services.

National Institute for Health and Clinical Excellence (NICE) guidance states that misdiagnosis rates for epilepsy in the UK are between 20-31%.

Patients currently have to wait between eight to 10 weeks from diagnosis until their first hospital appointment.

They wait about five weeks for an EEG (to monitor electrical activity in the brain) and 24 weeks for a magnetic resonance imaging scan (MRI), which can reveal structural abnormalities in the brain.

NICE standards call for waiting times of no more than a month.

Neurologists, nurses and epilepsy charities say the specialty needs an investment of 150 million to overcome serious gaps in the service.


And they say there needs to be an increase in the number of specialist nurses from 140 to 600.

They say the NICE guidelines will take at least another four years to be implemented.

Epilepsy is the most common serious neurological disorder
One in every 131 people in the UK are affected

Dr Jonathan Bird, Consultant Epileptologist at the Burden Centre, at Frenchay Hospital, Bristol, said the services offered to people with epilepsy in the UK were very poor.

"The NICE guidelines are not over the top, nothing Utopian. Everyone who has a seizure wants to be seen as soon as possible.

"They want to know whether they have a tumour, whether they should be driving and whether they will have to give up their jobs.

"At the moment only 6% are seen within two weeks and many of them will be seen several months later.

"It is very unsatisfactory. Epilepsy for a long time has been in the shadow - it has always been one of the subjects that has been stigmatised.

"The service at the moment, one would have to say, is very poor and also very patchy, depending on where you live."

Epilepsy Action's deputy chief executive Simon Wigglesworth agreed: "Epilepsy is the most common serious neurological condition in the UK, and has been highlighted as a national priority for action since 2001.

"Epilepsy Action welcomes the recent NICE guidance, which sets out better standards for epilepsy care.

"However, these standards will not be achievable in all areas of the UK unless there is a huge and immediate inward investment by the government."


Nicola said that one of the things that makes her most angry is the lack of information about the condition.

"No-one has sat down and told me what type of epilepsy it is or how I should stay away from triggers. I got most of my advice from the mother of a friend who died from epilepsy.

"The most frightening things for me was that I have had to go out and find out the information myself.

"With an epileptic person, each seizure causes problems and that is quite frightening.

"It is frightening that it is one of the most serious neurological disorders but people know nothing about it.

"I have been in a shop with a flickering light and have had a seizure before now."

She has four general seizures each week and countless partial seizures.

She has had to give up her job as a youth worker and says her life is ruled by her condition.

"Epilepsy affects your whole being."

NHS 'failing epilepsy patients'
20 May 02 |  Health
New epilepsy patients 'failed'
18 Oct 01 |  Health


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