Epilepsy ME (CFS) & DLA

Cotton_wool_katie

Hi - just wondering if anyone who has epilepsy recieves any DLA? & how frequent seizures are if they recieve it.

Also has anyone recently recieved DLA who has ME

Thanks in advance

CWK

System

my daughter gets dla for her epilepsy she has daily abscence seizures and occasional t/c seizures

Invasion

With ME, it's not about the diagnosis, it's the care and mobility needs that arise from it. I have HRM and LRC and I have a diagnosis of ME, it was awarded last March after I applied the previous November. Comes up for renewal this year, so 2 year award.

dmg24

Invasion, just to let you know you need to ask permission to have links in your signature. You can contact the MSE Team by clicking on the red triangle in your post.

Invasion

Thankyou dmg! Had no idea!

[Deleted User]

I have epilepsy get dla mrc and lrm,i have around 3 tc`s a week and several absences daily,you may want to look at the site below it offers great advice and a free forum for anyone with epilpsy
http://www.epilepsysociety.org.uk/Homepage

soolin

Invasion wrote: »

Thankyou dmg! Had no idea!

Could you please remove your link then please. It looks so untidy when the abuse team change it for their own one, so best do it before they do it.

KxMx

It's very hard with ME to get any benefits sadly

Invasion

KxMx wrote: »

It's very hard with ME to get any benefits sadly

I personally don't think that it's any harder with ME than with any other illness/disability.

It depends on your symptoms, and your needs. I get both IB and DLA and I have ME as my sole diagnosis (well, apart from bits and pieces that go with it) admittedly it wasn't easy to get them, but I don't think it is for anyone, especially with a fluctuating condition that has no clinical abnormalities on exam.

If you get the right support and get the evidence you need to back up what you're saying then you should get there eventually, as long as you have adequate mobility and/or care needs, or meet the criteria for IB/ESA.

I do understand that not everybody gets what they deserve benefits-wise, but that's across the board, not just with ME.

Cotton_wool_katie

Thanks for your replys.

Just in the process of appealing / going to tribunal with both ESA and DLA.

Admittedly i dont have ME as bad as a lot of people but it severly affects my day to day living.

On top of ME i have depression, maybe epilepsy?, vertigo. all of which makes every day difficult.

The benefits system is a joke - i would love to go to work and support my family but find even the day to day running of my home difficult.

Thanks again.

KxMx

Invasion wrote: »

I personally don't think that it's any harder with ME than with any other illness/disability.

It depends on your symptoms, and your needs. I get both IB and DLA and I have ME as my sole diagnosis (well, apart from bits and pieces that go with it) admittedly it wasn't easy to get them, but I don't think it is for anyone, especially with a fluctuating condition that has no clinical abnormalities on exam.

If you get the right support and get the evidence you need to back up what you're saying then you should get there eventually, as long as you have adequate mobility and/or care needs, or meet the criteria for IB/ESA.

I do understand that not everybody gets what they deserve benefits-wise, but that's across the board, not just with ME.

Well I applied for DLA and got a letter back saying I was not at risk of falls. This despite having to write after I applied because i'd had another fall (all of which are on my medical records after A&E visits) which needed a visit to the local walk in centre.
I have a friend with severe ME and the DLA "advisor" said she would get better and recover if she started gentle exercise. That's the kind of thing ME sufferers are up against.