My daughters DLA refused.

Refused for both care and mobility. They were apparently contacting the specialist she seen recently so no idea why.

Its so crap she really really needs this, she is gonna be devastated when I tell her. Right now shes in her bed still sleeping as shes been really tired and in a lot of pain with EDS the last few days.

I guess we cant do anything but appeal? Can anybody help or advise us at all. We used the info on filling out the DLA forms and we were very throurough about everything so I dont really understand.

This is really getting me down too because I know of 3 young people who have recently died because of EDS and another two are critically ill in the hospital because of it too.

We are both getting more ill and we are really in short supply of any kind of support from anywhere. Really dont know what to do next tbh.

Carolyn wrote:

Refused for both care and mobility. They were apparently contacting the specialist she seen recently so no idea why.

Its so crap she really really needs this, she is gonna be devastated when I tell her. Right now shes in her bed still sleeping as shes been really tired and in a lot of pain with EDS the last few days.

I guess we cant do anything but appeal? Can anybody help or advise us at all. We used the info on filling out the DLA forms and we were very throurough about everything so I dont really understand.

This is really getting me down too because I know of 3 young people who have recently died because of EDS and another two are critically ill in the hospital because of it too.

We are both getting more ill and we are really in short supply of any kind of support from anywhere. Really dont know what to do next tbh.

Hi C,

I am sorry to hear of your daughter's failure to gain an award of DLA.

I know that you say that you used our guides to make the DLA claim, but there is also very good information in the guides to appealing a DLA decision from this post. :

www.benefitsandwork.co.uk/forum?func=vie...id=10&id=70444#70446

Have you got a local CAB or other advice agency in your area that can help.

Also have you looked at the EDS website here. :

ehlers-danlos.org/

I'm not sure whether you can gain any advice and support from there, but may be worth having a look, if you haven't already done so.

If after looking at the appeals guides you have any general questions, please come back to the forum.

bro58

Thanks am already a part of the EDS online community. I will def appeal am just so exhausted.

Ihave to apply for myself too just not done it again as Ive already applied god knows many times for myself and was refused at my own appeal earlier this year. I just am so sick of it, even now with a diagnosis and the both of us are literally falling apart. Its just all doing my head in a bit.

I will def read the appeal stuff and will be appealing, just feel so tired of it all.

I am meant to be having a welfare place sort my appeal but there was a mix up at the last appeal and had someone from CAB who didnt have a clue about my illness and I just felt like it was all a waste of time. I just wish I could lie down and sleep and someoen would sort everything out for both of us cause am really struggling.

Thanks again for your help!!

Carolyn wrote:

Thanks am already a part of the EDS online community. I will def appeal am just so exhausted.

Ihave to apply for myself too just not done it again as Ive already applied god knows many times for myself and was refused at my own appeal earlier this year. I just am so sick of it, even now with a diagnosis and the both of us are literally falling apart. Its just all doing my head in a bit.

I will def read the appeal stuff and will be appealing, just feel so tired of it all.

I am meant to be having a welfare place sort my appeal but there was a mix up at the last appeal and had someone from CAB who didnt have a clue about my illness and I just felt like it was all a waste of time. I just wish I could lie down and sleep and someoen would sort everything out for both of us cause am really struggling.

Thanks again for your help!!

Good luck with the appeal C.

Let us know how you are getting on.

cheers

bro58

MOD EDIT. : Don't forget that you only have a month from the date of the adverse DLA decision to appeal using form GL24.

So sorry Carolyn for all the hassel you are having, hang on in there and keep going and take care
lots of luck and a hug

Carole