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Anyone caring for someone with epilepsy? - Page 2 - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
Hi Jean
I agree, it's a pretty appalling state of affairs with regards to epilepsy when you consider that 1 in 131 people have epilepsy, 450,000 people in the UK have the condition, with 40,000,000 people worldwide. With some people, it's still a taboo subject, bred by ignorance. The Epilepsy Association, now known as Epilepsy Action, promotes awareness and understanding of epilepsy, even working with health-care professionals. It's worth checking out their website.

My son was told he didn't have epilepsey anymore when he used to attend the childrens clinic at the hospital.by a doctor there without any tests or anything as he had been fit free for a while. when we went to see another speciliast about another problem she was disgusted and refered us back to the top doctor in the childrens clinic. Of course his fits have come back. We still went to the childrens clinic till he was 18 as they didn't know where to send him. It was full of small children and us!!! anyway turned out there was a specialist epilepsey nurse all along who he sees now.

He has complex Focal and tonic clonic fits and ths diagnosis is probably symptomatic temporal lobe epilepsey.

Its good to talk to other people who are affected by this as. Its hard to see him have the fits as he can't explain how it feels for him.
I just got this press release that I thought you might be interested in......


Epilepsy charities to merge
Two national, well-respected, epilepsy research charities - the Epilepsy Research Foundation and the Fund for Epilepsy - are to merge on 1 April 2007, under the new name Epilepsy Research UK.

Epilepsy Research UK will become the UK's only national charity dedicated to epilepsy research and will be at the forefront of research developments in this field. It aims to substantially increase the amount of funding going to this area of medical research.

Epilepsy Research UK's new website goes live on 1 April 2007. The web address will be: www.epilepsyresearch.org.uk
Thanks for that Matt.

It's always good to hear about research or combined resources into this debilitating condition. I've always thought that epilepsy was a condition that has been overlooked and ignored at the expense of the very people it affects. As mentioned earlier in the thread, prominence has been given to other medical conditions. Considering the effect that it has on people's lives and their families, I've never understood why it's always taken a back seat regarding funding and research. I think more public awareness and a change in attitudes is definitely the way forward.

All good wishes
I noted what you wrote about your unortunate experience LilyRose and I wondered if any others had similar experiences, or just a poor standard of care and treatment?

From my own experience with my wife's care, it's been an all-too-frequent occurance. The first neurologist we experienced was a lady, who I now believe must have escaped from the Jurassic period. She wasn't helpful at all and just seemed to treat and look at us with total contempt and suspicion. She didn't take us seriously when describing my wife's seizures, so that each consultation became an ordeal. My wife has a condition called 'eyelid myclonus', which is signified by a series of jerks and rapid eyelid flickering. It's regarded as generalised type of seizure, as there is brief loss of consciousness, which can disorientate her, so she is prone to losing her balance. This was waved away as a facial tic, would you believe? I received a copy of my wife's medical records and my lack of confidence in this doctor was, it seems, justified. She wrote that my wife was playing a sick role. My wife was sick and having a number of nasty seizures, which is the reason her GP referred her in the first case! Image

This is just one of many poor experiences that we've received. Upon reflection, with some consultants, the word 'quack' springs to mind.

All good wishes
Russ what a terible thing to say Image
Yes, it beggars belief, particularly when there has to be an element of trust on the patient/carer's part when seeing any doctor or consultant. As a result it can undermine confidence in the profession.
Hi Russ

In Leicester we had a situation with a consultant who diagnosed all sorts of children with epilepsy, whether they had it or not. He also overtreated a lot of kids - some were on 7 drugs at a time. When what he'd done was discovered he was neither struck off nor sacked. Just moved elsewhere with an agreement that he wouldn't work again with children.

The latest news on that front is that he's working with children again...you can imagine how the hundreds of families affected feel about that.
Hi Charles47, yes, I remember that case a while ago. This demonstrates also that doctors, consultants do not seem to be accountable for their behaviour, mistreatment etc. Even on a GP level, I think the Shipman inquiry unearthed a whole can of worms there.

We had the displeasure to encounter another neurologist - who was completely terse and rude from the moment we walked into his consulting room. He was asking my wife what her tonic clonic seizures are like and ignoring me completely - I might as well have not been in the room. How does my wife knows what her seizures are like, as she's unconscious when she's having them. He also said that she should have one of her anti-convulsants excluded from her dosage. This resulted in her having several seizures a day until one of the GPs from her practice re-instated them. On complaining to the hospital authorities, he replied by saying that we were told that her seizures could get worse. If that was the case, I would never have consented to her having them reduced and would have definitely said something! You don't go to a specialist to have your condition made worse - so he was dishonest too. Complaints fall on deaf ears I'm afraid, as the system is more akin to an 'old boys school' I've found in my experience.

I think that doctors should work with carers more closely and listen to what they have to say. We are with the people who are close to the person we care for, so who better to know about their condition? From my position as a carer, it's in my interest to find out information about the medical condition of my wife and to be clued up about it, so that I can understand it better and try to offer the best possible care with regards to its management.

Anyone else have any thoughts about this?

l agree Russ l dont thik doctors are really clued up to deal with people with special needs at all when l take my daughter for appointments it is in her records that she has very little speech she doesnt even know she has epilepsy all though l have told her, her lack of understanding because of her Autism and learning disabilities limits her understanding lm not saying that they should not talk to her and ask how she is but they could do it in a way that she could understand instead they still use medical jargon and sometime they dont look past the main disability (Autism in my daughters case) and try and put everything down to that for years l fought to get a diagnosis of epilepsy and they just put it down to Autism and her being able to cut off that was until she had a big seizure and l had to call an ambulance l know whennurses are doing their training now they have to do a secondment with children or young adults with special needs and the same should be for doctors if its not in place already well thats my thoughts on the matter
hope everyone is well
take care
96 posts