hacked off

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

P

petrie

New
Messages
15
Reaction score
0
Points
0
hi i was diagnosed with the big E in march 1st 2011,since then ive been pushed from pillar to post trying to find out what im going to be entitled to as in 11 weeks im out of my job as a firefighter.I phoned the the neurologist today to see if i could ajust my meds because ive had 3 bad night siezures in the past week(probably due to stress),he wasnt there so i spoke to his secretary who informed me theres a nurse who specialises in epilepsy and can help with loads of information that i was after.why wasnt i told she was there to help on the day the neurologist dropped the bomb shell,i just dont understand.
 
The nurse doesn't have the right to tell you to take more or less. They can't even write a prescription. If the nurse told you to take more or less meds and you did that nurse could lose their job.
 
I live in Blackpool UK and i have an epilepsy nurse specialist. She's based in the neurology department and much easier to get hold of when i need to talk to someone. If there is any changes needed in medication, she will speak to the neurologist for me, get him to clear it and then get back to me.

Basically she liases with my neurologist for me, and is great to talk to. You probably know how hard it is to actually speak with a neurologist between appointments.

Do you mean "entitled to" with regards to money? I had to cut down my hours at work drastically and applied for DLA and disabled tax credits. They top up my earnings until i can be well enough to work full time again. If you want any more info let me know.

Nice to meet you - Louise
 
Hi
My hospital has just employed a full time epilepsy nurse,so i went to see her about 6 weeks ago,to be perfectley honest i didnt expect much and thought it would be a bit of a waste of time,HOW WRONG I WAS!!!!!
She gleaned more info out of me than any nuero has,since i live with my brother she got him in for a chat and got even more out of him,mainley because my memory is shot my answers are vauge while he can tell a lot more about my actions than i can,i thought she was exellenet

p.s She was the first person to tell me im entitled to a bus pass.well it only took 17 years i wonder could i get my bus expenses back dated hmmmmmmmmmmmmmm?
 
Bugger, you just reminded me that my bus pass expires in two days >.<

It's gonna take a while to get one too. I either have to go to the DVLA, reapply, get turned down on medical grounds and submit that, or take the easy route and get the nurse to write me a letter lol. (Wish i'd thought of that the first time round, instead of going through all the rigmarole)
 
Ah well we epileptics have to stick together,i aint applyed for mine yet i must get it sorted out,seem like its one of those things ill do tommorow then the day after that and so it goes on.I think ive got to hand it into the community service point god knows what happens after that.
 
Hmm... i got mine from the local council, but it's valid to use all over England and Scotland (though unfortunately not Northern Ireland!) It's called a NOW card, pretty sure you can get them anywhere though.
 
I'm glad to hear of the type of relationship you have with your nurse Loopy Lou. It does make sense that they have nore time to listen and take notes. I myself know the more information they take the better. I'm glad for you and wish you the best.
 
I must look further into mine to,i was told it was just free for Scotland certainley not England which would have been ideal.
 
Ach, they've changed it so you can only use it in your country of residence. Would have been handy to catch buses up to Cairnryan or Stranraer. Mind you, i mostly fly to Ireland now so it doesn't really matter.

Edit - so sorry Petrie to get off your subject. Easily distracted >.<

But yeah you should definitely get in contact with the specialist nurse if you can. Are there other jobs you would feel able to apply for? It's become a little easier now that it's against the law to ask for medical information on application forms. Mind you, the problem is that they can still request a medical. That's supposed to be for jobs which need medical clearance but it seems like a lot of companies are using it as a loophole around the Equality Act of 2010. Certainly easier to get interviews now though :)
 
Last edited:
Hi everyone, my hubby has epilepsy and I was just wondering what benefits he could be entitled to, I was wondering whether to give DLA a try, he has Tonic Clonics and also has sleep apnea and high blood pressure, would this entitle him to anything?
 
Oh well,thats free trips to London and all over England gone right up in smoke then!!!
 
Hi htl2010
Im not to sure to be honest,im sure there are better people on here to answer your questions.Do u have to come to the mainland for nuero appointments,im sure he would get a buss pass,do you think he would get a ferry pass? Im just guessing nice to meet you let us know how u get on
 
htl2010 said:
Hi everyone, my hubby has epilepsy and I was just wondering what benefits he could be entitled to, I was wondering whether to give DLA a try, he has Tonic Clonics and also has sleep apnea and high blood pressure, would this entitle him to anything?
Click to expand...

I sent you a PM.
 
Thanks guys for the advice, I'll let you know how we get on! Yes, he goes to Aberdeen for neuro and scan appointments. I used to apply for DLA for my son who has ADHD so I know what a pain it can be and it seems so inconsistent when you look at who can get it and who can't! I was always advised to present worse case scenario when filling it in so I guess we'll do the same for hubby's form and see what happens from there. We do get subsidised travel to the mainland for hospital appointments to the mainland which certainly helps as it costs an arm and a leg to get off this rock otherwise!

I'll keep you posted! :)
 
thanks to all your replies.but the point i was making is why didnt the hospital inform me that a epilepsy nurse even existed,i only found out by chance and it doesnt seem right that youve got to stumble into info rather than being given it.
 
No,its not right you should have been told from the start,the only information i can give you is that it was my doctor who told me,not the hospital,he gave me her number to phone and i made an appointment wit her,it wasnt a long wait to see her in my case.
Neil129
 
well i got in touch with the nurses secretary and she said the nurse would phone me once she had gone over my case with the neurologist so i hope between them they can sort me out.
 
Yeah they should have told you straight off. They did with me. Mind you they could probably tell that i looked petrified lol.
 
petrified well ive never heard that one before lol.nurse has been in contact now and is making me an appointment to see her,she sounds very understanding.
 
You must log in or register to reply here.
Back
Top Bottom