VEEG on the NHS?

[Loopy Lou]

Someone told me recently that the nhs are very unlikely to do a VEEG on a person because of the cost. I was thinking about asking my neurologist when i see him at the end of the month. Not knowing for certain whether i'm having seizures in the night is driving me nuts! I don't know whether it's my mind playing tricks, if it's psychosomatic or if it is actually seizures. Even a normal longer eeg would do if it meant that i may find out for certain.

I'd like to feel like i know my own body again

So anyhoo, has anyone been able to get a veeg on the NHS before? I'm not very well educated on these things, as i've not had to deal with them before.

 

[epileric]

I don't know anything about the NHS but I do know that whenever I've wondered if I'd done something during a seizure, I always had. I'm thinking the same applies to you, that you wouldn't wonder if you'd had a nocturnal seizure if you hadn't had one.

 

[Loopy Lou]

Thats very true, but i just want closure really. Ooh i don't know. Feeling a little confused lately :dontknow:

 

[epileric]

Feeling a little confused lately :dontknow:

Only lately? I feel like I was born confused & I'll die confused. Not so bad once you get used to being like that lol

Seriously though I can relate to that frustration, I just don't know what to do about it either.

 

[vapour]

I am from the UK, i currently live in the US. I highly suggest if you can afford it... by any means afford it even if it means eating mash potatoe and beans for weeks.. and giving up certain things.. GET A PRIVATE neurologist.

NHS wont give you jack. Did it take months to get you into the neurologist in the first place ?

I really hope you do get the tests you need, if you cant afford to go private at all be demanding. My mother had a heart problem the NHS would not od anything about, she finally went private and paid the money and it saved her life... she needed open heart surgery. Her friend who has cancer and was told she had only a certain time to live came out here to the US to a UCLA hospital and they are going to give her the surgery she needs when the chemo she is recieving in the UK has shrunk.

grrrrrrr... sorry.. just very bad memories @socialized medicine.

 

[Meetz1064]

Only lately? I feel like I was born confused & I'll die confused. Not so bad once you get used to being like that lol

Epileric, you DO make me LAUGH!! Thank you, I needed that tonight!!!:roflmao::roflmao:fft:
:bigsmile:

Lou, have you ever considered borrowing someone's videocamera or something similar, and videotaping yourself???

 

[Loudmouth]

Loopy Lou, I was told by my neuro 2 1/2 yrs ago that I needed a VEEG to see how bad my night-time seizures were, but still have not been able to have one. The NHS just will not stretch to that if you don't attend one of the LONDON hospitals(probably one centre up north as well but wouldn't know where), and the furthest my PCT will allow me to go is Queens' Hospital Romford. London is only another 15-20 mins away on the train, but because my PCT won't fund it, I can't have one. I am saving up to try to go private but it's very hard to do when I can't work and have 3 kids to look after. I tried to pay for BUPA health cover but they said that as my epilepsy was a pre-existing condition, it wouldn't be covered. All I can say is try to use the 'chose and book' system of picking what hospitsal and neuro you want to use. If your PCT refuse that neuro, do what I am doing and appeal to NICE to try to get the tests and treatment that you need. Also if you check online for neurologists, you can often find what the best ones in your area are-or further away if you are prepared to travel. If you are unemployed you can claim back your travel costs it's a bit of a pain in the arse but they do do it. Also if you are on a low income. Good luck with trying to drag a VEEG out of the National Healthcare Shambles....

 

[Loopy Lou]

I do have a free bus pass, but Preston is probably far enough to go. It's a really great department, but i think the next best one is probably in London, and it's so far to travel!

My dad was just asking me the other day about whether we should have health cover, but didn't believe me when i said that we couldn't get it as they don't cover pre-existing conditions (He's diabetic and has a lot of other health problems.) We were thinking of getting health insurance before we go away (In 12 days, woooot!)

I suppose the best i can do is just ask my neuro.

Vapour - It took four months for me to be able to see a neurologist, another month to get my MRI, Yet another for my EEG, about two months to get the results from them, and nearly 7 months after seeing neuro for the first time, i see him again at the end of next month.

Luckily i am still working although it's much less than i was before. I think i'll take your advice Meetz and have a look online. I wasn't aware that you could actually pick a neurologist - i thought you just got what you were given lol.

Thanks guys

 

[Loopy Lou]

Hmmm no luck looking for good neurologists Apart from Queens Square in London, which unfortunately is much too far away.

On a slightly different topic, i did just find the National Society for Epilepsy website, which has loads of useful information on it :clap:

Edit - Plus it's in "Laymans" terms. I think maybe i should get my mum and dad to look at this. I would direct them to this site, but this is sort of my own place...

 

[Loudmouth]

NSE are good. have you also got anyone from Epilepsy Action local to you? I have found that my local volunteer (Sheila, an absolute gem!) is soooo helpful, she has even been able to sort out appointments I've needed that I've not been able to. They also have an online forum...Forum4E although I have to say, I prefer to chat to people here, I find Forum4E has a few people on there who are a bit judgemental, whereas here they are more supportive...

 

[Loopy Lou]

Hmmm... I'll have to have a look for that. Thanks Loudmouth :banana:

 

[Loopy Lou]

I didn't have any luck on the internet, but i did eventually find a number for a woman who covers the Fylde Coast... I'll give her a bell on tues or weds when i'm off work (My goodness - two days off in a row )