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Scleroderma & Raynaud's UK (SRUK)

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esa

glyn profile image
glyn
14 Replies

i wrote to my mp andrew smith to ask where i stood with anything he forwarded my letter and i just got the reply. its the same as my esa/dis thats all. so it looks like i will be signing on and look for jobs , well its going to be fun at interviews if i get that far .in and out of oxford every other week, even if its just with a sick note to the job centre. funny they were the ones advised me to go onto esa as i would not get a job?

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glyn profile image
glyn
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14 Replies

I couldnt get ESA with scleroderma, sjogrens, primary biliary cirrhosis and hypothyroidism so i,m not surprised you couldnt get it. I,m now back at work full time as i need the money, hated signing on.

msdeedee profile image
msdeedee in reply to

I am sorry but is ESA the same as disiablity?

SandraMarie profile image
SandraMarie

I'm confused, as I have to stop working due to my condition, so will I not get ESA?

glyn profile image
glyn in reply toSandraMarie

its a long road to get anything, as you are working you may have a better case . i would say stay and let your employer medically retire you or get you boss to sack you due to your condition , that way you have a stronger case.

Bee346 profile image
Bee346

SandraMarie you will no doubt have to fight to get ESA. The examining board will almost certainly award you just a few points if you. You need medical evidence from your GP(?) who will endorse that you are not fit to work.You need to explain how your illness impacts on you not what illness/es you have.Good luck.

Bee346 profile image
Bee346

*if you are lucky (that should read)

lynbw profile image
lynbw

Hi Glyn

i get Dla , did you tell them how your meds affect you ? i wrote a letter with my claim and filled it in as if i was telling them how my conditions affect me .I dont know what you are taking but if they are anything like i take that alone stands for a lot of points . i cant do anything until i take them in the morning and then waiting for them to work takes time .Bee346 is right in saying you need your Gp to back you . i need to rest quite a lot during the day , how can you do this if you are working . i have four children and have worked for years until this affected me in the nineties , it has been a big impact in my life ,good luck do not give up all best wishes lyn

fairygoddess83 profile image
fairygoddess83

i get esa for serve primary raynauds and bipolar.. i have been trying to get dla but they keep saying i dont need it and i dont need anyone to care help .. which is soo untrue as nearly everything is setting off my raynauds if gets bad lowers my mood and get depressed which then leads to my bipolar kicking off ... theres so much stuff that i need to help me yet i cant afford it as all my money goes on my bloody gas bill which over £1000 for just 3 months and i was still frozen ... hope you get the esa and other help ...

uknlv profile image
uknlv

When I was put off work due to my condition I got ESA right away, but it was the one where they expect you to go back to work. After being on it and sending my sick notes every so many weeks I was sent for an interview with one of their doctors. I was denied long term ESA and then appealed and was sent for another interview. I was given long term ESA. In between I had to go register for the JSA and the person sent me to a specialist adviser. I also filled out the form for DLA mobility and it took me about 3 tries and one appeal to get it. The problem is that the people who originally look at your claim are not doctors or nurses and they go by a set criteria and they have no idea what Scleroderma or Connective tissue disease is, so you will need to appeal. When you apply for DLA they will send a form to your GP to complete as well. It is very difficult to get the carers portion of the DLA though, you have to show that you can pretty much not do anything for yourself at any time. Only suggestion I can make is when filling your forms for DLA put how you are on your worst day not on average days. I wish you luck and hope you get help soon.

SandraMarie profile image
SandraMarie

Thankyou for advice, I am actually self-employed(this was the only way I could work) My condition is in my lungs now though and I can't do my job anymore. I've been getting low-rate care DLA and high-rate mobility DLA for some time now, so maybe I'll stand a chance with the other benefit. It's all so demoralising.:(

glyn profile image
glyn in reply toSandraMarie

i was told that esa would stop if i got dla as it is higher . check with dla as you might get a higher rate care or advise centre

SandraMarie profile image
SandraMarie

I'm surprised at that as DLA is to help with extra needs not everyday money, and I have been able to get working tax credits along side it. Oh well I'll find out soon enough. It all keeps changing anyway so sooner or later they'll probably stop all of it,and then where will we be???? :(

keza profile image
keza

Hi all, i have diffuse scleroderma & was awarded ESA, DLA & carers allowance all at the higher rate, in all my letters it states that i will get this amount forever as the condition is incurable, i believe its because i have had organ involvement.....Kidney & vascular, but i didn't take a letter from the GP, i took one from my consultant who see's me for my scleroderma, perhaps that's what you need to do to get this money, Hats of to all of you that are at work, that's something i can't ever see me doing again.......If only i could x

I too get HRM & HRC along with SD IS and my partner gets carers allowance for me the first three i got in 91 and have had ever since with Scleroderma & Mild Raynaulds FOR LIFE/INDEFINATELY (however we all know that as far as DWP goes life/indefinately mean nothing nowadays and many conditions suddenly do not qualify?

I like you only wish they could get rid of my symptoms so damn fast and well my worry is what does it say about the "specialists" who are using their years of expertise to say how we will be affected for them to reject it and say we wont?? i really wish one of the really well known eminent physicians would take up a case where his patient was thrown off on the grounds that his diagnosis is being questioned or be brave enough to sue or somehow get it out what these non trained people are doing to us surely eventually going to cause a no confidence vote in our NHS system (although if you read my blog you might learn an amazing fact with Scleroderma/mild raynaulds) but there in it shall remain that some get some dont Why?? your guess is as good as mine i would say that the benefitandworks.co.uk website is well worth visiting if having issues along these lines the advice there-in managing to get loads of claims paid.

Good luck never give up fighting its simply has to be done

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