Calling All Brits- RE NHS & YOUR TREATMENT FOR EPILEPSY??

[Mantis]

Guess I better join the late party too- it's good to vent about the NHS on here, saves me freaking out strangers in my local who just want a quiet drink

I have to say my GP has been great over the years- can't fault him at all, but the neuro? Hmm not so good. I have no way of getting in touch with her save from going via a secretary (who repeatedly doesn't pass info on, then gets really b*tchy if I ever complain about it).

Our twice-yearly appointments are just 15 mins of me describing what's happened since the last time. I actually had a seizure in the hospital on the way to my last appt. I missed it, but was on a gurney recovering- clearly in a post-ictal state (loss of speech, needed to 'reboot' etc) and when I finally did get to see her, she recorded it as me having fainted!!!!

That for me was the last straw. *bangs head on desk*

4-letter word, rhymes with 'fit'...

The incompetence that you describe certainly reminds me of my own experiences with the NHS. Now, don't get me wrong. Some of the NHS staff are very good indeed, but when it comes to epilepsy they are few and far between. The "specialist" who I've been having to go to Birmingham to see on an irregular basis has been completely unresponsive and unhelpful. And just like your experience, his secretary is practically useless. On at least a few occasions she has promised to pass a message for a call back to him. Didn't happen. It's a joke that this guy is supposedly amongst the best in the UK.

Some time ago I went for a PET scan. I have temporal lobe epilepsy and the NHS has told me that my epilepsy is quite the mystery. For a couple of years they told me I had an arachnoid cyst in my brain, but I definitely have TLE. Now they've told me I don't have that cyst at all... erm, okay? They also told me that I might have lesions ALL OVER MY BRAIN. Well thanks a !@%£ing lot, guys! I don't know what the future holds for me if that's true, but I'm going to Birmingham in the next week or two to get the results of the PET scan that they told me they'd give in a few days. (But, you know, being the NHS a few days is a few months at least.) This result will determine whether I can have brain surgery. I guess I'll let you know the outcome. It would change my life so much if they could essentially "cure" (I know it isn't a total cure) me of the seizures. I can't get my hopes up though.

 

[Elaine H]

I'm trying to think of a way of getting some kind of television documentary made on epilepsy, how the hell would we do it? I guess it's down to the big organisations like Epilepsy Action and Epilepsy Society. We are starting to see programmes about the human brain and all it's complexities now aren't we? Conditions like Tourettes, Depression/Bi-Polar, ME, Alzheimers, etc, but never ever Epilepsy, it is still the hidden disease, it is still mocked, people are still scared of it, and I don't care what anyone says, there are still people out there who think you can catch it!!! You would not believe the things I have had said to me over the last thirty years, and when I finally get my book typed up, it's all in there. To be honest, with all the horrible stuff that's been going on in my life over the last few years, it's been a struggle to keep positive. I got kicked off a training course recently for a voluntary job!!

Considering that this is the 21st Century, we still live in the Dark Ages when it comes to Epilepsy, it's up to us to keep battling on and keep positive, and educate the masses, the alternative is that the next generation will have to go through all the s--t that we are going through, and we can't have that can we, it may also help the way we are treated by the NHS, bringing more attention to the condition, and hopefully better training for our GP's, no epilepsy can't be cured, but life could be made a lot more comfortable for us and consequently our families.

I hope everybody is ok, I hope the warm sunny weather helps your mood as much as it does mine? And, all of us who are members of Epilepsy Action or Society should write to them and see if we can get them to somehow organise a tv documentary soon. I'm still doing radio when I can, but we need prime time television, so that people can see normal healthy people, not three legged mouth foaming, nostril flaring, teeth baring animals, crawling across the floor in a puddle of pee!!!

Lotsalove

Lainey
XXXX

 

[Mantis]

I'm trying to think of a way of getting some kind of television documentary made on epilepsy, how the hell would we do it? I guess it's down to the big organisations like Epilepsy Action and Epilepsy Society. We are starting to see programmes about the human brain and all it's complexities now aren't we? Conditions like Tourettes, Depression/Bi-Polar, ME, Alzheimers, etc, but never ever Epilepsy, it is still the hidden disease, it is still mocked, people are still scared of it, and I don't care what anyone says, there are still people out there who think you can catch it!!!

I've thought about producing an epilepsy documentary one day myself. I think the only way we could make it happen is to pitch the idea in the form of a trailer-sized segment of video to a major broadcaster. Of course, the best choice for that would be the BBC, but any form of approval is unlikely. Channel Five is very fond of illness-related documentaries, but to be honest, it feels like they broadcast these for the sake of entertainment rather than education. They're nearly always superficial.

As things stand I certainly couldn't host or narrate a documentary like this. I'm okay when it comes to video editing, and I thought about many interesting ideas. For instance, discussing the various forms of epilepsy, more so in layman's terms. Or showing what a tonic-clonic seizure is usually like in a first-person perspective; through the epileptic's eyes. I find it difficult to accurately recall a TC, and although you certainly couldn't document the feeling of imminent death (yikes!), showing the distorted sounds and vision (and various other sensory disturbances) might make it an interesting documentary for the average person.

Of course, the most important aspect of such a project is education. It suffices to say however that facts and figures will cause most to flick the channel unless interesting experiences are documented, such as an epileptics perspective or the trauma caused when one's life is taken away. That's my two pennies' worth. It's certainly a documentary that needs to be made, and indie projects aren't always ignored. They just need a voice.

 

[Nick88]

We would have to be very careful about making a documentary I think. Many of those "illness-related" documentary, especially on channels 4 & 5, can be a bit freak-show-ish.