I'm the first MP to declare I have epilepsy

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Paul Maynard MP writes for ePolitix.com ahead of his Westminster Hall debate on epilepsy services in the NHS.

The range of chronic conditions that people have in this country is enormous, so why, you might ask, have I picked out epilepsy as the subject of a Westminster Hall debate?

I could put it down to self-interest. As someone with nocturnal epilepsy, I know that epilepsy is unlike many other chronic conditions in that it is not a constant. It steals up on you, rather like a thief in the night. The fear, confusion and uncertainty when you wake up after a fit has to be experienced to be believed.

But I know I am not alone in having a form of epilepsy. So the debate I have secured is not for my own benefit, but to raise issues on behalf of the 400,000 across the country who have epilepsy. My own local area, Blackpool, has one of the highest incidences in the country.

And people with epilepsy have a range of concerns. I know from my own experiences how attitudes and stigmatisation can affect diagnosis. I also know from the Joint Epilepsy Council's work the cost to the NHS of misdiagnosis - some £140m. Better services and better treatment can actually lead to cost savings, whether in Disability Living Allowance payments or NHS spending.

So improvements to diagnosis and treatments are crucial. And that means ensuring specialist nurses, GPs and neurological consultants are in place to deliver that better treatment - and those savings.

As someone who relies on drugs to control the epilepsy, I'm concerned like many with epilepsy that I have consistency of supply in my tablets. Changes in manufacturer can mean tiny changes in the drugs themselves, and that change susceptibility to fits.

I've nothing against generic substitution in principle, but I want to know when I pick up my prescription that it is the same company's products each time. I know the consultation is under way, but I really hope this message is being heard.

I believe that I am the first MP to have made clear I have epilepsy. Yet prevalence figures suggest there should be five or six. There is a tendency to keep the condition secret.

The fear and the stigma put people off being honest and open about the challenges they face. I fear this makes the challenge of improving epilepsy all the harder. I hope that changes. Whether in hospitals, schools or just in the community, people with epilepsy should not have to fear the consequences of their condition. Yet I know so many do.

When I once wrote to a local newspaper to highlight National Epilepsy Week, one correspondent replied the following week to suggest I had evil spirits.

If in the 21st century, we still treat those with epilepsy as though they are one step away from the ducking stool, then it is clear we still have an awful long way to go.

I hope that my campaigning, and that of others, starts to deliver a better deal.

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