Lupus and the dwp

Hi , I have had lupus SLE for 14 years I am now 56 .I have arthritis, rash and lupus nephritis level 3 .since my diagnosis I have had an acoustic neuroma and after surgery lost the hearing in my right ear , after a leak of CSF fluid a few years later I had my ear drum removed , 3 months after the surgery I had a massive seizure due to a blood clot on the brain . In 2011 I got meningitis and nearly died , I got another blood clot in my groin when in hospital and so I am now on warfarin for life as I have had 2 clots .I have worked for 7 years out of the 14 ,for the last 4 years I have been unemployed and claiming esa .I had to go for a capability for work assessment in august and I was declared as fit for work .This is worked out on a ridiculous points system , to be declared unfit for work you have to get 15 points , I scored zero and so my esa benefit has been stopped and I have to sign on at the job centre . According to the dwp I am as fit as a fiddle . The report they did on me was filled with lies , for example in the section referring my hearing they wrote that I had heard a conversational voice at 3 metres with BOTH ears and she wasn't wearing a hearing aid . Pretty impossible for me to have heard a conversational voice with both ears as I have no eardrum in my right ear and a hearing aid would be useless .I got no points for that section , I got no points on any of it , basically they have said I have lied about my illnesses despite seeing letters from the hospital with everything listed .They commented 4 times on the report that I go to the supermarket to do shopping there fore I am fit for work , maybe if I stop going to the supermarket and starve myself to death they will be happy .This is very stressful and the appeal will take months and I am already having a flare up because of it , has anyone else had this problem x

14 Replies

  • Please stay strong. This is what they do. Picking on the most vulnerable. Good luck😀

  • I'm so sorry to hear this. They have done the same to me recently and many others will suffer. it's going to be a long process, But we can't allow them to get away with LYING about US!! It's disgusting. Keep strong and fight them! That's what I intend to do. Big hugs from me xx

  • Hi jacqs

    Sorry that the same thing has happened to you!. If you read my reply to Buffy I've given what you can do. Good luck. X

  • Thank-you, I am already having a flare I will probably end up in hospital by the time it gets to appeal , these days even letters from consultants don't work .

  • Hi buffy

    So sorry to read you've been turned down for ESA despite a lot of serious health problems. Please go to Citizens Advice who will help you with an appeal. They know how these things need to be worded to get results!. There's also a website which gives a lot of benefits help for applying and appealing.

    I don't know how the DWP can do this to people causing such stress , as if being ill isn't enough!. Good luck. X

  • Hi I had much the same thing happen to me although I was 62 years old after being left with nothing and two failed appeals they did admit in a letter to me that I was severely disabled ,

    But fit for work with the help off the council's welfare fights officer I was able to retire and claim pension credit plus she got me pip .

    I recommend you to go and see welfare rights at your local council.

  • Thank-you I have just emailed them , noone is going to give me a job with my medical conditions and my age 56 , they know that but they don't care it's all about saving money , it's cheaper to pay jobseekers allowance than esa x

  • Had my assessment yesterday. The woman measured my wrists and ankles for muscle wastage????? Most of the questions don't really sit well with SLE. It felt bizarre. I'm awaiting the outcome with trepidation.

  • Hi Buffy

    Yes this happened to me last year too, I scored 0 points aswell and felt so insulted. I appealed which was to no avail but then went to tribunal and won and was put in the support group.

    The point I focused on when I got the original decision was that the assessor clearly had no medical knowledge of my complex conditions and based her decision on as you say the ridiculous points system (can you move a piece of paper from one desk to another etc) and didn't take into account fatigue, good and bad phases etc and my main fact of why would I give up a job that I loved and was well paid in to live on ESA. So I tried not to get too despondent.

    I straight away did my appeal letter which I was advised was unlikely to change the decision but is a formality but the CAB advised me that my best chance was at tribunal. At a tribunal there is a doctor on the panel who has the medical knowledge that I think is needed at the assessment stage and I felt I could argue my case to someone how knew what I was talking about and was also very sympathetic. On the day it really wasn't as daunting as I thought it would be.

    Please fight this, I know its so insulting, unnecessary and with all the stress it brings it really doesn't help our conditions but it was such a relief to me when I got the decision overturned.

    Do let me know if you need any help.


  • Hi Buffy14,

    I think this is ridiculous they have declared you fit for work !!

    You need to appeal this decision.

    Get yourself on to the website you have to pay £20 for membership but it is valuable information they have on there that will help you with the process.

    This website actually tells you how to appeal and the process you need to make, but also it tells you how to complete the forms for claiming any benefit and it also tells you the things they look out for too. Also with assessments it tells you what to do and not to do when going for one. For example they have people watching you approach the building and when you leave in case you limp while you're in there but then walk out fine. Also sometimes they actually glue money to the floor to see if anyone can bend down and pick it up. Believe me they play very dirty indeed. But this website tells you all of this which is why it's worth paying out £20 for the membership.

    Right now if I was you I would write a letter and in that letter explain your illness and how it affects you day to day. But write about your most painful and worst day ever, as if that was your actual day. How it stops you from doing things, if you can raise your arms but only for a couple of minutes then you can't do it. Write what you can't do not what you can.

    Also, photocopy all of your hospital letters even appointment letters so it shows you go regularly and any treatments you have had. From as early as possible too the better. Go to your doctor and tell them that they have made you fit for work and ask if there is anything he can give you to send with the appeal. Sometimes you have to pay sometimes you don't it all depends on the surgery. Address the letter to DWP and your well on your way to having your appeal finished and then send it off.

    Good luck and I really hope this helps you.


  • I've already paid £10 and got similar forms from lupus UK , I am going to welfare rights for help , I have done a letter to ask for the mandatory reconsideration just waiting for letters from my consultants to send with it , it's ridiculous that I have to ask my e n t surgeon to give me a letter explaining that I am actually completely deaf in my right ear after the surgery and I wasn't making it up which is basically what the dwp have said x

  • your local council social services may have a welfare rights officer who can help. In my experience they are more help than Citizens Advise.

    It must be possible for the activities/ descriptors to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity.

    If you have pain and fatigue these should be taken into account as to wether you can do the "activities" / descriptors on the form eg walking, reaching, standing.

    If things "vary" thesy should take into account wether you can or can't do the "activities" for the "majority" (ie over 50% of the time).

    So for example shopping you may not be able to do it everytime but only when on a "good" day with your SLE. Doing shopping may cause exhaustion so that you can only do a small amount of shopping at any one time, and if you go shopping you may need to rest for the rest of the day and not be able to do anything else .... you need to be able to let the assessors know this kind of thing

    It does depend on what you put on the form in the first place ... I always try to fill out mine so as to "fit" how they give you points. You may have to either appeal the decision (or sometime people completely re-apply to get re-assessed stating reasons why they need a re-assessment eg You did not realise that fatigue and pain and relaibility etc should be taken into account when assesing what you can and can't "do")

    Here are links to how they "score" you to put you in work related activity group (WRAG) ...,

    and also here for the support group ....

    If you are a member of the charity Lupus UK you can access guides to claiming benefits ...

  • I've done all that and I am going to ask for a mandatory reconsideration then appeal , you don't stand a chance when they lie in their reports , obviously I can easily prove that they have lied when they said I heard a conversational voice in BOTH ears , my surgeon is doing a letter to say that that is impossible .I am taking immunosuppressant medication , aren't they chemotherapy medication , that has not been taken into account at all , I also take steroids and now have osteoporosis as a result , the so called doctor who assessed me hadn't a clue what my medication was not even the ibandronic I take for osteoporosis, thousands of people take that , she had to ask what it was

  • Hi buffy14,

    It sounds like you're doing the right thing and on the right track.

    In future I would just photocopy and keep anything and everything your consultants post out to you.

    That's what I do now and whenever I'm called in for an assessment whether they want them or not they get the stash of letters pushed under their noses. They can see then that I've had regular steroid treatments for my arthritis etc.

    Good luck and I hope everything works out.


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