Hi,my names Andrew,im 37 and have had S.L.E from 16.I recently received a letter asking to assess for Emp & Support allowance,any advice?

The cold weather normally housebounds me and itsays it may refer me for a work capability assessment which ive heard nothing but bad things about,im worried about someone with no idea of lupus sitting in judgement over my life!

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  • Andrew,I would recommend that you get letters from your remuy and your GP about your lupus. Concentrate on your bad days and let your care givers speak for you. Go to your local dial / or other agencies that deal with disabilities and get some one to go with you on appointments with emp show them that you need assistance with talking to these people. A report from your doctors will do the trick please don't do this alone get help good luck Andrew healing hugs matey.

    Luppychick x

  • Morning,

    I just submitted my paperwork, it took me 3 weeks to do, however I don't agree with Luppychick, I did a lot of research and you need to put in there how your days vary so that the assessor can see the real picture. Also if you just tell them about just your bad days then they could get the impression that you are always like this, and you could be at risk of loosing your benefit through fraud.

    I detailed good, bad and average days, I typed all the answers so you can add to them as you go along.

    AS Luppychick suggests i did get a statement from my carer who is not family I also sent in my latest report from my rheumy.

    Just be totally honest, and think carefully about your answers, picking up a box may sound easy but on a bad day for me, I don't have the energy to stand long enough to lift a box, or the balance either.

    Good luck and try not to worry

    Nic

  • Thanks a lot for your advice,think i'll pop and see my doctor for a letter,i pretty much rely on family and friends instead of a carer.Its just the fact i look normal on a good day with maybe a swollen ankle or even little finger!while a bad days all day in bed.Lupus seems to be a lot more respected today,but my local doc once admitted that id probably know more than him about it and could only pescribe!thnks again,Andrew

  • Be very wary of presenting too rosy a picture of those days when you perhaps don't feel so bad.! Tiredmum', I hope you are not disappointed when you get your results after carefully completing your form, but I should warn everyone reading this who have yet to submit their form that being 'honest' can result in your claim being turned down or your being placed in the work related group rather than the support group .My husband works for the CAB and is an expert in dealing with the agencies that assess claims for ESA , DLA etc, most of his day is spent in helping people submit appeals and whilst there ARE some people who really aren't eligible for ESA ( i.e. there's nothing wrong with them ,they are just trying it on ) a lot of genuine people are turned down because they have admitted to having 'good' days or being able to do things 'sometimes', which is true for all of us, but if you say so it will be pounced on as proof that there's not much wrong with you! It is not being fraudulent, it's just the way the system works under this government, unfortunately.The assessors are not medical professionals, they will understand nothing of the implications of a disease like lupus, they are just glorified clerks ticking boxes. His advice, as luppychick says, is always present your worst day as your normal day and get help and advice from the CAB or similar before submitting your form, with as much medical evidence as you can supply.Good luck!

  • I recommend that you collect medical evidence and go to your local Citizen's Advice Bureau who will be able to help. You can't do this alone. Good Luck

  • Hello Andrew,

    I know how worried you must be feeling, with regards to the dreaded ESA form. Like you I have SLE and other mental health issues. When I received the form I went into complete meltdown!

    The forms are horrendous and very misleading. Thanks to Paul Howard our administrator for this site. I received an email from him containing amazing guidelines on how to answer the questions posed in the ESA form.

    I also received a letter from Christine (also part of Lupus UK) which gave a detailed explanation of SLE and it's myriad of symptoms.

    To top up my evidence, I approached my G.P, my Consultant and my Mental Health Nurse/counsellor and asked them to write for me a letter explaining exactly how Lupus affects me. They were all very willing to help. Also I put a printout from my G.P of all my medications and the adverse effects that they can have on me in every day situations.

    The best thing with regards to the forms is to fill it in, with how you are on your bad day's in mind. It is those bad day's that are important.

    Please ask Paul for the fantastic guideline documents. They will help. There is a lot of information to absorb but I just took my time, over a three four day period to fill it in. With the help of my daughter. I received the form months and months ago. Have just received a letter stating my ESA award.

    So don't worry to much if you can. Get in touch with Paul he is a great help.

    Hope this help's a little.

    Sharron..

  • hi sharron are you in the support group or the work group but not expected to go back to work

    kind regrds caroline

  • I had the joy of attending one of these 'Medicals' a few months back. Personally, I found it a horrific experience. They had me in there 4 2 hours, purposely trying 2 trip me up with what medications I took, how often, why I ook them, what the problems were etc (they were basically trying 2 correlate how many meds I said I took with how much pain I said I experienced 2 c if everything matched). I was in absolute tears, getting really confused & agitated as they were basically asking why, after having had a diagnosis 4 19 years, I had suddenly been declared unfit 2 work by all my medics.

    I am STILL waiting on the outcome but I would say take somebody with u, tell ATOS BEFORE u attend u're medical with them that u want it recorded & obviously base everything on u're worst days. Just as an example, they ask if u have a pet. By hteir reckoning, if u have a pet (regardless of what kind of pet), u're well enough 2 feed it, walk it, clean it's cage etc etc therefore r not as ill as u claim lol! x

  • Thanks for all the advice,you've all been very helpfull,Andrew

  • Hi Andrew,

    Try not to worry about this, do nit take it personally, IB is coming to an end so everyone on it has to be reassessed.

    Get letters from consultant, be sure to answer every question on the form because if you don't they will ask you to go for an assessment with ATOS.

    Answer each question imagining how you would cope in the workplace. When we have our home adapted to our needs it can be hard to remember how we would cope out there is a non adapted workplace. Get someone from an advice service to help you complete the form. answer the questions on mental health as well. If you get anxiety or depression describe how it affects you when you need to go about your daily activities. Tell them if someone helps you with your activities even if it is a friend or family member. Anxiety and depression, and memory problems, are a common feature of lupus, you dont need to have had treatment for them in order to put them on your claim.

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