DLA help please: My DLA is up for... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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DLA help please

TJSTICKYBLOOD profile image
13 Replies

My DLA is up for renewal soon each time I end up at a Tribunal but always win. I know we all have different syptoms but does anyone have some helpful tips as I don't fancy another Tribunal

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TJSTICKYBLOOD profile image
TJSTICKYBLOOD
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13 Replies
paddyandlin profile image
paddyandlin

I know there is a book that gives advice and tricks and tips will see if i can find it and also have you spoken to your money advice service they should be run by your council you may also want to try Citizen Advice will see what i can find

TJSTICKYBLOOD profile image
TJSTICKYBLOOD in reply to paddyandlin

Thanks Paddy I have access to the material you are talking about which can be found at benefitsandwork.co.uk/ think there is a small fee but lots of access to material. I was after tips specifically connected to Hughes at the last tribunal the GP on the panel said '' you are on warfarin now so you should be better' I then had to explain all the damage that the disease has done to me even in the handbook they have for guidance Hughes is not included. But thank you so much for your reply.

Storky profile image
Storky

I am a member of B&W. If you would like to PM me I will help you with the information you need.

AnnieAxVale profile image
AnnieAxVale

Hi TJ

What you need to explain, if asked this question in the future (re warfarin you should be better) is this..

You have incurable antibodies in your blood that can form clots and make your blood sticky which affects your whole body, including the working of your brain. You take wafarin because it helps to ease your symptoms and preventative against clotting events. It DOES NOT cure the antibodies. They continue to develop and can become rife regardless of the warfarin you take. The antibodies are always present. You can also add that warfarin is an unstable and erratic drug and can alter and change depending on many factors - the other drugs you take, your diet and general well being.

I hope this helps a little :)

TJSTICKYBLOOD profile image
TJSTICKYBLOOD in reply to AnnieAxVale

Anniemk this is very helpful and the type of help I wanted

Herb profile image
Herb

You can take an advocate to the tribunal, there are charities who can provide one for you. In Newcastle near me there is a charity called the Rights Project which I used to be involved with and they often went with clients.

judes profile image
judes

AnnieMK thats a really usefull way to explain things succint and to the point. My DLA and ESA is due for review and will try to rememebr that and add it in to the list. though I do have other probs not related to Hughes. And I always take some one with me as I dont see so well, steps are a nightmare partly due to eyesight and partly due to back probs. (30+ years of working in a health setting and then a riding accidnet where I broke several back bones)

TJSTICKYBLOOD profile image
TJSTICKYBLOOD

Thanks everybody for your help I'm awaiting for the forms to land on the door mat its due for renewal in Jan so I'm starting to gather all my evidence fingers crossed no tribunal this time as its so stressful but as before I will go all the wayif need be

AnnieAxVale profile image
AnnieAxVale

I am glad it was helpful.. :)

SharontheSheep profile image
SharontheSheep

HI there,TJ it took me nearly 2 years to get my DLA and I was finally awarded at tribunal. I am sure the fact that I still work went against me that and the fact that the moronic DLA doctor did not understand that having hypermobile joints means that I can touch my toes and bend! But that does not mean that I am an athlete. I am currently asking for the lower rate to be reviewed as those of you that have read me before will know I don't do much of my own care at all now. I know I will have to appeal the negative decision. It's a shame you can't take an understanding doctor with you to the tribunal!

Keep collating the evidence.

Love sharon x

TJSTICKYBLOOD profile image
TJSTICKYBLOOD

Sharon it seems that me and you have experienced the same thing I felt because I work did not help despite the fact I struggle to keep my job I'm lucky to have fairly sympathetic employers. At my last tribunal I took a disability officer who said i should have got mobility (I got middle care) but I was too exhausted to appeal but I will ne going for it this time asmy legs have deteriorated a lot I have taken photographic evidence and I'm awaiting test results too for my legs and that's just one of my problems

SharontheSheep profile image
SharontheSheep

Isn't it ridiculous. Do you have a Blue Badge? Would you like to look at my application stuff for when I got my mobility bit? Have you applied for a taxi card? Have you got your Local Authority on side? Sorry all this seems a bit agressive but it makes me so cross when we are trying so hard to continue being valuable members of society and we're not asking for the world just support. I don't mean to bombard you with questions but I think we need to address this issue of people with APS having problems with DLA. If we had MS we wouldn't have to explain ourselves, I'm not wishing for 1 moment that it was MS rather than APS but it's really not our fault that the medical world isn't as informed about APS as it is about MS. People with MS pretty much automatically get DLA higher mobility once diagnosis is confirmed. I have the week off work so I am going to do a bit of research this week.

Look after yourself, I am on the case

Love Sharon "the sleuthing" Sheep xx

mully profile image
mully in reply to SharontheSheep

people with ms don't automatically get dla we are dragged through hell just the same as hughes patients i have positive lumber puncture and 3 mri's confirming ms also probable hughe s i belong to the ms society and we're all in the same boat i'm afraid its just awful how we are all treated both hughes and ms, never met someone with ms who just automatically got dla i've had it 8yrs and been severely disabled with it and was awarded dla a year ago for just 1 year have to claim all over again in june won't it be great if i'm cured in june plus i'm not alone like i said we're all in the same boat ,good with your claim mully

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