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I Just wanted to say thank you for a great site, i know i can come here anytime of day and someone will listen to my moans knowing what i am talking about. Its fantastic to read other peoples experiences and know your not the only one who feels like this.

After a very emotional day i heard my medical assessment i have scored 6 out of 15 and they are taking me off ESA and putting me onto JSA in January saying i am fit to work. I have SLE and Anti phospholipid syndrome have had multiple clots to my legs and lungs, tired all the time, joint pain in my knees and loss of memory. How can these accessors make this judgement of your day to day life with the questions and assessment they are given ( I cant uinderstand it ) I have said im going to appeal need to find the strength from somewhere but dont know where to start any advice would be greatly appreciated kind regards

8 Replies

Hi REVAMP2010,

I'm glad that you find the site useful. It is always nice to have positive feedback about a service that we offer.

I'm very sorry to here that you are having a difficult time regarding your benefits at the moment. Regrettably it seems that many people are in a similar situation at the moment.

You are well within your rights to appeal. Have you contacted your local citizens advice bureau yet? They are there to help people such as yourself and can give you all the assistance you need to appeal. They have experts at filling in the forms necessary.

LUPUS UK can also provide a supporting letter if it is needed. Send an email to if you need one and we can send it out.

If there is anything else you need, please don't hesitate to get in touch.

Kindest regards,




Paul thank you so much for your support and advise i have contacted Lupus uk and awaiting a reply and i will contact CAB as you advise. It very sad that we as Lupus sufferers have been through so much already and have to fight for our rights and what we are entitled to

Kind regards again


I'm now sending you a message regarding this


You have to appeal,and tell them how it is on a bad day,some times when we go to these assessment we don.t do that,we tell how we feel that day and that day maybe the best day you have had for weeks

All the best



I am really sorry to hear about the problems you've experienced in regards to ESA. I know exactly what you mean. Everytime I go for an assessment, I am told that I did not score high enough and so have to appeal. Jan is totally right about having a tendency to tell how we feel that day instead of how much of a negative effect Lupus has on our lives. I constantly feel as though we are almost being punished for staying positive about what this disease does. I try to play down the problems I have, almost as a way of making sure the illness doesn't defeat me completely by bringing down my mood as well. The truth can hurt a lot of the time, and staying slightly positive about it all seems to get you nowhere. The main thing is to appeal. 9 times out of 10 the appeal is successful, and the great thing is that the money that gets deducted from you during the appeal, is backdated to the date it began when ESA is rewarded after the appeal. So it's not all doom and gloom. Remain positive, it's bad enough having the illness, don't let ridiculous government policies get you down too!

Hope you begin to feel better soon



I worst comes to worst.

Get yourself to the job-centre and say that you want to work. Then when they try to match you to a job, and ask what you can and cannot do. You tell them what you cannot do. A. You cannot sit still for too long or drive because of the risk of DVT from the APS and you cannot do....B Type because of ... and you cannot do C. Stand up for too long because. and you cannot do D. or F. etc.

It will very quickly become apparent that you cannot actually do any real job.

This worked for me at one point.


Good to know LupusUK are able to support with people's ESA claims. I've experienced the "system" first hand as well is in my work and it is very frustrating, particularly as people are usually in the throws of major illness at the time of applying. "Stress" the demon to us all is certainly not considered within current processes. I found I had to chase my claim every step of the way to get my full entitlement near on time. (lost paperwork and other frustrating delays)

As a professional, I find it quite patronising that I should be made to attend work focussed interviews or risk losing my benefit and I am distinctly not happy with the hint that "someone from DWP" may be involved in my "condition management". I do believe we have the right to gain access to work and that the "appropriate" support should be available. In my opinion ESA will always remain no more than a tick box exercise unless some of the barriers to work are removed e.g. employer awareness of Lupus and current benefit enittlement rules. It can be so disheartening to find one's self forced to turn down work because the benfeits would be cut too sharply, making it un sustainable.

I feel angry to hear what youv'e had to endure and I hope you get your entitlement sorted very soon.

Best wishes



Hi everyone

thank you for all your replies and support i myself try to stay positive i put on a big front to people that im ok but inside im screaming. Some days i dont even leave the house and have to force myself out of bed every day just so that i have abit of stability in my life. My illness affects me on a daily basis but i am the only one that has to keep going and stay positive otherwise i would be in a very dark place.

I have worked all my life and miss my working / social life as you lose this once you leave employment and i would love nothing more than to have it all back. You get put on these benefits and just left to lose your confidence and are given no support to get back in2 the work place after being diagnosed with illness such as Lupus. You just dont know where to turn when something like this happens to you but i am thankful of the support of this site but i can understand why some people give up and feel like they dont want to keep fighting for what they are entitled too and give into these goverment policies who pick on the wrong vunerable people

Thanks again for you kind words of encouragement

i will let you know how i get on


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