How can my dla be stopped completely ... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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How can my dla be stopped completely when my condition has worsened?

acjoseph profile image
9 Replies

I suffer from sceroderma, raynauds,depression.migraines, fatiguE was granted dla 2008 after year 12yrs workin in the veterinary industry, lost my job due to depression lateness and generally being unreliable...I am in constant pain and my 5yr daughter is unofficial carrer...why is it whenever I have an Idependent assessment I get told I am more than able(took me 20mins to get to the door to let him in) I am finding some healthcare professionals dismissive(it cud be due to the fact they r busy lookin at my dyed hair..it helps hide the thinning and my tattoos which cover pigmentation) have been advised to appeal but am generally deflated by black and white medical facts from which I suffer and being told iam fine...... I am in a very dark place.this illness is so mind altering and now I'm being cast aside...any advice

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acjoseph
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9 Replies

I get DLA although i have to reclaim soon - as my hands are too cold/swollen at times to prepare a meal. Appeal via citizens advice bureau. I also have scleroderma/depression and today had a horrible experience with my rheumatologist who took nothing seriously despite my symptoms (and i have dreads, tattoos and piercings)! I know i am not fine despite their 'expertise'

acjoseph profile image
acjoseph in reply to

Feel like a drama demon.... I don't see why we shud be made to feel its wrong to express ourselves thru body art... Shud I dress like a frump and "ham up" my symptoms... If I had the grip in my hands I wud have thrown (someyhing really light like a paper clip) thE independent GP baically wrote opposite of what I was sayin.....do u find u really have to physc urself up to go to "specialist appointment" u see that big file listin what cud kill u and they send they ummM and aaaaaahhH and send u away....as I was diagnosed young (7yrs old I'm now 32 ) I have nothin to gauge normailty on.... Keep inkin keep piercin(my always grow out) keep doin u..... U have really helped

SandraMarie profile image
SandraMarie

Why do you automatically assume that it's to do with the way you look. It took a lady in our local Disability rights office to get me DLA, I didn't even know there was any chance that I might be eligible. Noone had ever suggested it to me. I now get lowrate care DLA because of limited ability with use of hands, and finally after being heavily persuaded that I was entitled, I now recieve highrate mobility DLA, as the scleroderma is in my lungs, and also have Bronchiectasis,so constant chest infections. Best advice would be to find out where your local Disability Rights office is and make an appointment.They even fill forms out for you and deal with these other officious people on your behalf. I could not have done it without them.

lynbw profile image
lynbw

I agree with Sandmarie it has nothing to do with the way they look. don't give up you deserve this DLA . give it a go at your disability rights office , good luck best wishes lyn

acjoseph profile image
acjoseph

Thank u for above answers... I know deep deep I shhouldnt let the few consultants who raise an eyebrow abd say humm tattoos inyeresting.... Have got afew days left to aqppeal just Abit deflated due to the fact the hospital ssupported my clAim in 2008..... This pAge is very informative and will b a regular visitor,,,time for meds. And home visit from physo

Don't take the result of the assessment personal, especially if it was conducted by ATOS. The good news is that appeals following the outcome of the assessment (and the decisions they make) are pretty successful, just make sure you get the right help (CAB can advise).

I have only just begun this process but have made myself aware of what to expect and where to get help. Tip for anyone going for an assessment: take someone with you and request (prior to the assessment) that it is recorded.

Best wishes, Layla

Anteater profile image
Anteater

I also think you should appeal I get middle rate DLA at the moment which was assesssed in 2007 - It was for an indefinate period but with all these changes going on with the government I presume that a reassessment will be done. I also get Incapacity Benefit due to my inability to work - I was retired on Ill Health retirement in 2007 from my job in Local Government. I also had loads of time off and could not do my job properly or any other similar job.

Recently, I completed an ESA form to be reassessed for IB - I have to go to see ATOS next week regarding incapabilty to work. I am 56 years old had Raynauds since I was 15/16 and diagnosed with Scleroderma in 1992 although looking back I had the symptoms long before in my 20's. I also have numerous auto immune diseases which cause fatique, tireness and aches and pains of the muscles and joints. WHat are we supposed to do, live on fresh air..

We are easy targets, it makes me angry that some people claim these benfits that are able to work - why pick on us and make our stress worse????

Very Very angry and stressed person at the moment !!!!

lifeforce profile image
lifeforce

I was diagnosed with scleroderma in 2000,I continued to work also in the dog business until 2008. My fingers stayed so infected with ulcers and my muscles cramped up so bad I had to go for disability. After the social security taking about 6 months while I couldn't work they sent me to their doctor. I have a face full of telengectasias so I went bare faced, that will scare anyone and my crippled hands completed the picture. But you know the doctor asked me if I had any tatoos,I thought that was strange. I did get approved and I get 1/2 of what I made but I am thankful for that. Hang in there and don't give up, sometimes you have to get a lawyer to help you. Take care.

acjoseph profile image
acjoseph

Thank you all so much,some of the dark clouds are shifting slightly,I have a wonderful cousin who is fighting my corner while dealing with her own health issues.Health consultants,G.P and mental health team saying I should not give up and i have valid reason to claim...suppose having to face my condition head on is daunting for me (25yrs in denial will take awhile). Hats off to you brave strong folk.will keep u guys informed

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