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ESA assessment

Hi everyone, i have been on disability for a few years. I have Lupus, auto immune hepatitis, Sjogrens and Fibromyalgia. I also have other things going on. Lung involvement and a kidney problem. Five years ago i also had a perforated colon that nearly killed me. I have damage to my colon but the doctor thinks its too risky to have surgery with my health and medictation. Recently i've been getting really stressed about receiving a letter from DWP wanting me to fill in a questionaire and probably wanting me to go in for assessment. I have read a lot about the assessment and watched the dispatches programme...sick note Britain and the Panarama programme, disability or faking, and it seems even the sickest people in society are being thrown off benefits and classed as fit for work. Has anyone had any experience with them and if so what was the outcome? I live on my own so don't know how i will cope if they take my benefits away. I am becoming more and more terrified of going in after seeing how callous they are with people who are obviously too ill to work. Any information would be greatly appreciated. Thankyou. Love to all xx

17 Replies

Lupus UK has plenty of advice, which you can find here:

Good luck!


Thankyou. I've just renewed my out of date membership and can't access them yet. Hopefully i will be able to in the next few days. Any idea how long it will take to get access? I paid online today..thanks


Hi Jacqueline. There is no way to access them through our site. If you want any guides, please email me at




I have just had 2 fill out a DWP form 4 my renewal, which is stressful enough as it is! This will b my 2nd year claiming ESA & so far, I haven't been asked in 4 a medical, they have been quite happy 2 accept letters from my Rheumy & regular 'sick notes' from my GP.


Hi if you are a member of Lupus Uk you will b able to get a supporting letter from them, I ailed and he was really helpful. Be sure to mention all your symptoms and tell them how debillitating lupus really is. Hope it all goes well for you.


Hi don't give up ! You will need all the help you can get from medical

People , letters an statements . An CAB had to fight tooth an nail for my daughter an no doubt it's going to be all of us .good luck


I'm also going through this even they have said themselves I won't be able to return to work on the other hand they still want me to go to work programmes but I'm appealing the decision and sadly I have appointment with GP tomorrow to get a sick note something the DWP told me to do because if I don't turn up to the assessment they will stop money it makes me mad because I've just also been passed for high rate mobility and care because I can't walk etc etc. it's an unfair battle if I was faking my illness then fair enough but I know the doctors won't lie about these things but DWP just don't care they just want figures


Hi, I went for assessment a couple of years ago and was worried like u are. Consultant letters, my physical appearance really helped. The doctor did not examine me, he was actually apologetic for asking me to attend. I was amazed as I had heard horror stories. I was given lifetime benefit at the higher rate and have also been granted medical retirement from the health service. However I think I will have to b reviewed again to keep getting the benefit thanks to the governments great sweep of the benefit system, so hope when I get the call, it's not a problem. Hope that helps in a worrying time for all disabled people.


The CAB helped me with all my forms, and I was put in the support group. I appreciate how lucky I was because of all the horror stories I have read here and elsewhere.

Just make sure you tell them about when you are at your worse.


Thanks everyone for all your advice. I'm seeing my rhuematologist on tuesday so i woll ask him if he will help me...also Cab and mh gp and even lupus uk. i can walk ok most of the tkme even though i do geg quite.bad arthritis and most of the tests seemed to focus on the physical. But knowing that some of you have managed to stay on benefits is a relief. I know i will have to appeal if i need to. I wish uou all the best and thanks so much for your input. Jacqueline


My sympathies with you for having to go through this.

I was placed in the support group for ESA. My partner gave up his job to be my carer, moved in with me. He is (was) a teacher in a secondary school, so this was a sacrifice for him. He now goes in voluntarily when needed as he loves teaching!

Anyway, we informed everybody that I am no longer living alone and that my partner was no longer working as he is my carer.

My ESA has been suspended without payments since 6 Nov. while they decide on his income - of which he has none! We now have to appeal, because I believe my ESA has been stopped now!

The system isn't fair. When stress affects us so badly these forms are not good for our health.

The decisions are made by a group called ATOS, it's their job to cut 22bn from the welfare budget, they are paid 100m a year by the Government to make these cuts - and they were the sponsors of the paralympics!

On the plus side, it is good to know that there is help available with the form from Lupus UK.

The day after my diagnosis I went to the ATOS HQ and joined the demo! (don't seem to get out much, but I really wanted to do that)

I hope that everybody's reviews are fair to them, and not too stressful.

I read and article written by a nurse who worked for ATOS until she could bear it no longer. She stated that if you wear make-up, or smile you are marked down. If you can propel your own wheelchair, you are marked down. If you can press a button on a keyboard easily, you are marked down. Something to think on at the fit for work assessment?

Much love,



Great help and advice from everyone. I think the thing to do when filling forms in is to describe how u r on your worst day.


the system is unfair, i am struggling to work and we can not live on my hubbys full time wage alone but im not entitled to any help as i can feed and dress myself? yet i know of a person whom gets everything going and laughs that we have a 13yr old car and she just got a new dla car. i have no probs with geniune people whom need financial help but one or two i know are taking the system for a ride and getting away with it!


Hi Jacqueline121

I would ask your rheumatologist to write a supporting letter that you can put in with your application stating that it will be detrimental to your health if you are asked to do any type of work or work related activity. I really don't think they would bother you then. I was not asked for an interview after filling in my form, I was just put in the work related activity group, so I doubt if you will be asked. Because of this (being put in the work related activity group), I will loose my money in September as my husband earns too much money - lol - I wish! I've written to my local MP and just got a letter back saying how good it was for disabled people to work and make a contribution to society - it was as if I'd never worked.

I didn't put my supporting letters in with my application - that was my biggest mistake - please don't make this.

All the best


Thankyou all so much for your advice. I wish you all the best of luck who are also going through this crazyness. Take good care of yourselves. I will keep you posted. Love and hugs jacqueline


I have had the same experience as sher78. Please try not to stress. Just send supporting letters with your ESA form as evidence.

Take your time filling in the ESA form.

Keep a diary of how your illness effects you each day. It's easy for us to forget how bad we have felt when we are having the rare good day.

I am sure I have read if there is major organ involvement with Lupus you will have a good case.

All the best.


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