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

[Elaine H]

Hi Guys

Next Tuesday 22nd Jan, I'm attending a Reception at The House of Commons-Westminster, London, on behalf of Epilepsy Action. We are trying to get better and more efficient treatment for people with epilepsy. I just wanted to hear from anyone on here who had suffered at the hands of the NHS?

I've friends who know they have epilepsy, were sent away from their GP with a prescription, and that was it!! No scans, no idea what to avoid, to do/not to do, no Neurologist, what triggers it, how it started etc, and as for being a possible surgery candidate??? Never been discussed. I'm going to be talking to MP's, Health Officials, doctors, Saphire nurses, all the people involved in looking after us guys who try and live with epilepsy every day, I thought if I could offer a few examples of our lack of support, it would be helpful to the people in the future too, who will hopefully be looked after more efficiently than we are.

I know it's not all bad, but, I hear horror stories all the time, and that's just me! so there must be one hell of a lot of bad experiences out there, I know my mum had to really fight to get me considered for surgery, but not everyone has the sort of support that my dear mum gave me, and lets face it guys, the alternative, unless we are lucky and it stops on it's own, is a life on these drugs, no drivers license, and unless told to take a Calcium/Vit D tablet daily,Osteoporosis, and probably no career!!!

C'mon, spill the beans and share your stories with me?? I'd love to have some examples when I get to Westminster, it can only help eh? :agree:

Lotsalove

Lainey
XX

 

[cazzy]

where what when,i will come aswel...i live in lowestoft.....my treatment one word SHIT

 

[Elaine H]

Hi Cazzy, wow, that's kinda how a lot of the guys I know have described it. I'ts a shame it's not a kind of debate though, I know there would be more againsts than fors, if you could kinda briefly summarise it, I'll jot it down in my notes and mention it. It's no probs if you don't want to, you certainly wouldn't be named or anything, it's more so that I can show our general opinions and give a few true to life examples. I'lll sure let you know how it gies though, I see my neuro the following day, for the first time in nearly a year!!!! I've had to hound them for an appointment, and my seizures have never ever been more regular or more severe, crazy huh? We shouldn't have to ask for help should we, not with such an incredibly complex and at times debilitating condition as this?! Thanks for writing. X

 

[Cez]

Hi Elaine,

I'm Ceri from Cardiff, I've had epilepsy since I was 5 the care I have recieved is mixed, my new neurologist is fantastic hes discussed surgery/new medications as I'm running out of options.

I'm lucky enough to live near a specialist unit. However, the problem is not the lack of trying to care for people its the staffing/money issues. My neurologist says they need at least 8 nurses at the unit....they have 2....no one is specialising or willing to work in such a high demand field.

The unit is crippled with over saturation and under staffing. Due to this I struggle to throw blame as they try to make the best out of a dire situation. To be frank it feels like the NHS funding sees it as "it cant be cured, so why bother?" obesity and diabetes are going to be scoffing up even more of the budget as time goes on so I can't see it getting better. Especially outside of the epilepsy community most people barely know what it is let alone care or try to help. I'm sounding like a cynic now, apologies!

I have also found it varies from Dr. to Dr. My previous neurologist for got who I was everytime I saw him, pretty much ignored everything I had to say and was generally rude and dismissive. However, my new one is bending over backwards to try to help and is checking up on a regualar basis. I do see a general reluctance for GP's to deal with epilepsy as I think they feel its such a complicated condition that they feel intimdated and not qualified enough to make the decisions. Basically I feel there are too few staff for too many many people. One word rules all MONEY! There is no money to be made in epilespy. Sorry a little long winded, plus I'm not sure its even relevant due to being in wales and seperate health boards etc. Good luck!!! Its lovely to see people taking some action!! I hope they listen I really do, I think most people don't understand how much epilepsy impacts the people who have it.


Ceri

 

[Elaine H]

Hi Ceri Thanks so much for taking the time to reply, and to be so wonderfully explicit and open in your opinions of the NHS, and your treatment. You don't need to apologise, I have heard very similar comments many times, but where you said there is no cure for epilepsy so why bother? it really hit the nail on the head with me!! Having had TLE since 1986, I agree with the complexities of the condition, and having also lost countless jobs, you were again sadly right, where you say society generally has no idea how much it effects us, it's not just falling to the floor, legs akimbo, peeing ourselves, rolling our eyes about, people are always shocked when I tell them, that there are forty different types of epileptic seizure!! I've also had consultants before, who peer at you as you walk in, and fob you off with yet another prescription for yet another new anti-convulsant! I'm really looking forward to it, just hope the weather is ok by then, it is snowing heavily here, and I am having a particularly bad time with Atonic seizures right now and don't fancy travelling to and around London alone, especially if I keep dropping to the floor!!
Anyway Ceri, thanks again, I shall be making notes of people's experiences and as I'll be able to talk to doctors, MP's, pharmecutical people etc, I can at least quote true life examples! I will certainly let you know how it goes. Luv Lainey

 

[jonsey]

good god were do i start , my daughter was miss diagnosed for many years . Our gp said i was over protected , amy was a lonley child and thats why she day dreamed. Until she hit her late teens when she first experienced her seziure . You have to have three episodes before even beeing considered for the usuall tests . I had to leave my daughter in the hospital because i refused to take her home , i walked away leaving her , that feeling never left me . Luckly the next morning when the doctors came around to do the rounds , Amy wandered off thankfully thats when things started to be done.

But its still been a long battle , appointments to long in between , cancelled appointments again to many times . Feeling of being a guiene pig , because the doctor you are under has an interest in epilepsy .

Thank god for my distant family here on CWE . I have a voice now and it will get louder

Good luck

sharron

 

[jayde-101]

i am currently fed up of being talked down to and talked over and "not believed" by the neuros around here !!!

 

[Fedup]

Elaine H

Hi Elaine as you can see I live in Ireland but I did spend a little time in England and I must say no more than Ireland the doctors in the Hospitals do not seem or want to know anything about epilepsy or anybody with epilepsy, from what I have read and heard much the same problems exist in both countries, lack of interest in the condition and the person, lack of treatment given and the fear shown by doctors when they meet somebody with epilepsy. The one thing I must say is both times I was admitted to hospital in London the nurses were so kind and nice they made up for a lot.

 

[Sammy]

Hi Elaine, many thanks for trying to help us all! I for one am very grateful. I am 40 and have had epilepsy from the age of 16. I have had so many drugs I have lost count, however, as a result of a lack of control via drugs the neurologits have lost interest. I however, still have the condition...and two children to care for. I am often unable to get to the centre in Chalfont as it is not accessible via public transport, and I therefore, need to speak to a specialist via phone; this I am told, is not a service they offer. As a result I have not seen my specialist in over a year. Dreadful! Good luck.

 

[Maisy]

Check out my post what a day n half in the padded room, been waiting two months nearly now they don't care its wrecking my career, just been send away with high dose of tegretol, been hit, laughed at andcalled names at the hands of professionals, don't know how too explain it uts a nightmare

 

[Cherriuz]

I didnt have a problem getting diagnosed. The problem was my neurologist said she thinks im having seizures and to follow up in 6 months, no specific answer as to what was causing it. Couple of weeks later I got a letter diagnosis: epilepsy - follow up with epilepsy nurse in 6 months. No support. No help. No advice. I turned to my gp who has upped my dose of anti depressants and sent the epilepsy nurse out who explained how busy she is, left me some leaftlets and off she went.
Sunk further into depression. Just been left to try and find my feet.



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[Maisy]

In some ways we are luckier than most regards drugs and things but in others were not we can't choose our neuro etc, its tough, and the ignorance is diabolical think I've said this but angers me so!

 

[cazzy]

In some ways we are luckier than most regards drugs and things but in others were not we can't choose our neuro etc, its tough, and the ignorance is diabolical think I've said this but angers me so!

yes we can

 

[Maisy]

I've been told I can't and put up with it!

 

[Elaine H]

Well, it is with real sadness and regret, that I have to write this, but because I've had so many Atonic Seizures this last few weeks, I haven't gone down to London this morning. I also couldn't get anyone to come with me at such short notice, and also, as we have had a lot of snow, many trains in my area have been badly affected over the last few days. I am so upset to be missing this, and all I keep doing is looking at the clock, and thinking, I should be there now!! I've been sat here alone day and night for months, get the opportunity to do something positive, and everything goes wrong!! Can't help thinking somebody somewhere has got it in for me!!

I just wanted to thank you all for your replies, and I spoke to Epilepsy Acrion's PR Manager yesterday, and I told her about the feedback I'd got from you all, they were fine with me not going, and very grateful for all our feedback on what we all think of the NHS, and how we feel things could most certainly be improved to help us all live with this extremely complex condition more comfortably, rather than just suggest we "take another one of these and come back in six months....close the door on the way out please!"

I've got a little bit of good news, I've got a Work Placement, starting on Monday, working for the Borough Council's Employment and Disability division, hey!! quite appropriate huh?!? it's unpaid, part time, but could lead to a job, and, the most important thing of all to me right now, is it will get me out of this damn house, meeting new people, mixing with people etc!!

I'll keep you posted, but I just wanted to thank you all for your input, let you know that your comments weren't wasted, and I'll let you know how my little job goes. I had an Atonic seizure after the interview, so lets hope I can get through the first week relatively wobbly free!!

Lots of Love To You All

Lainey
XXXX

 

[Nakamova]

Sorry you haven't been feeling well Lainey -- hope the seizures give you a break. But it is good news about the work. Keep us posted!

 

[stacyemma]

hello I am a patient in chalfont centre, my professor is prof sisodya, he is wonderful. I prob will never be cured as it is genetic but he tries as best he can to give me better quality of life, general neurolgists I have found to be about as helpful as a radiator tho.

 

[Nick88]

Sorry I'm a bit late to this thread. Just wanted to say that I haven't got a bad word to say about the NHS. I'm sorry to hear that some of you have had bad experiences, but they've always helped me and done what needed to be done. All my Drs have been amazing and healthcare workers are some of the people I admire the most in the world.

 

[Crash]

Im late in on this thread to.I would say im 50/50 with the NHS.Once diagnosed my doc just came round the house after my EEG and MRI and gave me Epanutin.I was not told what to do and what not to do.Every seizure after that my dose was upped.Never saw a neuro for years until i complained that my head was a mess with the Epanutin,was never talked through anything,like how was i feeling seizure wise.Nor the possibility off adding another anti seizure medication.

In the end i got my nuero appointment and was changed drugs straight away to Tegratol and got to the bottom off a few things.I've a newdoctor now who is great.If i go to him with a sprained ankle,he still asks about my epilepsy and how im doing.

But at the start i never knew any better,it was like "take these and you will be fine".I wasn't aware off how fickle epilepsy is and the many different ways it can effect you.But now things are much better,regular nuero appointments an epioligist nurse i can phone any time if i have questions or concerns which is good as i seem to have developed a new type off seizureto go along with my original lot.I would never have known any off this if things had stayed the same.So as i have said above in my experiences 50/50.

 

[SlimBlue]

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'...