Epilepsy care: Your comments


For years NHS care has been driven by the need to meet targets.

Jane Hanna, director of the charity Epilepsy Bereaved, argues that removing these targets could create a more level playing field for the rationing of health resources and save lives in treatments such as epilepsy

BBC News website readers have been sending in their comments.

Your comments:

I was lucky to be seen quite quickly and I have regular check ups with a specialist. I have met too many other epilepsy sufferers who were using medication that wasn't working, later when they moved to a new area and were seen by a new specialist, they were given new treatment that worked very quickly! Theirs wasn't a new treatment for epilepsy. Lots of time lost and lots of suffering and frustration through lack of specialist help! L Todd, Hampshire

I feel like shouting from the roof "when will our words be heard?". Our daughter died from SUDEP (sudden unexpected death in epilepsy in 2005) we know first hand the devastation and loss from lack of investment in epilepsy care. Epilepsy Bereaved is the "leading light" in trying to find "why" these deaths are happening, when will the government listen to them, and give them the support they need to prevent further loss, when oh when? DB, Norfolk

As a bereaved sister, it is about time epilepsy and its potential consequences was treated with more respect. This is not some benign condition. It should be treated in the same way asthma and diabetes is. These are both long term chronic conditions that can have serious complications if not managed correctly, so does epilepsy. It is criminal that people are dying without good reason because of the basic lack of care they are afforded. Lynn, Dorset

Services for people suffering from epilepsy are atrocious in the UK. It took the NHS 12 years to correctly diagnose my symptoms as epilepsy, a further 13 years to find out that the cause was a benign tumour, and nearly three more years to get around to removing the tumour, hence bringing an end to my seizures which had been completely uncontrollable with drugs. I wouldn't even have had the surgery if I hadn't put my foot down and insisted on being referred to an epilepsy specialist who actually knew what he was talking about. Having spoken to many others with the condition, I get the impression that this kind of experience is not at all unusual. TW, Coventry

I had no idea this was the case. My son is literally in the process of being diagnosed with Landau Kleffner Syndrome which is a form of childhood epilepsy. We have been trying to get him into the system due to our concerns for nearly two years now, and have incurred great cost and concern due to misdiagnosis. Enough was enough, and during a meeting with his GP (who just could not be bothered) we insisted on a private referral. The condition is highly regressive and my little boy can no longer speak or understand what we are saying to him. He is confused all the time and often seems afraid due to the changes he has gone through. We are finally at a stage where we feel that we are being taken seriously and that he is going to receive treatment for the right condition. However, having read the above article I am highly frustrated that my son has had to go through this whilst we have been systematically bounced by the medical profession! The change cannot come soon enough! CJ, Manchester

I have been very lucky and put a lot of it down to living where I do and paying for a private consultation. Having had epilepsy since I was a baby I had access to the expertise of Great Ormond Street as a child and received amazing specialist treatment, but as soon as I turned 16 I was deemed to old for their care and had to go back to my local hospital where they knew very little. I felt I was just treated as an experiment trying new drugs and constantly increasing doses rather than looking at what exactly was causing the seizures. It got so bad over the next 10 years that I paid to go for a private consultation (very expensive) where the neurologist referred me to The National Hospital for Neurology and Neurosurgery in London and from there I never looked back, but without paying for a private consultation this may not have even been possible. Sally, Rickmansworth

As Executive Director of the Epilepsy Foundation Western/Central PA I commend you for advocating for the rights of people with epilepsy. I have been working with children and individuals with epilepsy for over 23 years and many of the same myths still exist. On a positive note people like you have shed light on SUDEP (Sudden Unexplained Death in Epilepsy Patients). We in the US owe you a debt of gratitude for the work that you have done. We too are trying to get physicians, neurologists and the public to be aware of the dangers associated with epilepsy and what we all can do to learn about early warning signs of SUDEP. Judy Painter, Pittsburgh, Pennsylvania

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