Have to go back to work: good morning. I have just... - LUPUS UK


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Have to go back to work

Donnygirl profile image

good morning. I have just recently had my assesment for my ESA. They have decided i am fit enough to go back to work. I see my rhummi every month has they are struggling to get my lupus under control. I am starting with a flare in the last few days and feel so ill and tired and the pain all over is getting too much for me. I have also started with a new problem with my right hip hurting when i move. So besides all other joint pain my hips have added to it and so has my jaw which keeps locking and is painful. Because i have been unable to work i have now lost my car and have to rely on my family to do so much for me. Does anyone know how somebody sat behind a desk make judgements of you when they havent met you. So angry !!!

23 Replies

It sounds so un fair... is pbc.. some kind of cirrhosis?.. and for my info.. what reaction did you get to the malaria drug?


PBC is caused by the autoimmune by my liver specialist has decided that it is more likely caused by my lupus. It is called primary billary chirrosis. The only thing that the malaria drug has done for me has stopped all the rashes and burns i tended to get. They are now adding a new drug to my list but had have tests to make sure my liver could take it. Hope this has helped x

I know it's hard but keep fighting dwp it has taken 6 months to get my esa restarted.go to copy every appointment and medical statements you have.ring them a make them aware. Record..who and when you speak to them.do not give up ,good luck,they make you have more stress than you need.get someone to fill in the form,don't forget to tell them worse days.any send them all your info.I sent mine registered letter.they claim they lost my first form,then ATOS lost my second,so my husband did it all again.please make photo copies of everything.I have now been put in a support group.They want you to give in,good luck again,feeling very cross about what's going on as regards dwp and lupus sufferers.Hope this is helpful.

Thanks for that steph i have been doing all this anyway. I think its not worth the fight anyway anymore they only allowed me 27.00 a week and has made things even more difficult for me to cope with. The fight is all gone :-(

I went through nearly the same thing as you Donnygirl, except my work also declared me unfit and would not allow me back, so I was unable to access any income at all because the Atos board said I was fit! It makes me sick honestly. I haven't given up though, just keep trying and good luck to you xxxxxxxxxxxxxxx

I am just making another claim for jsa... i challenge them to find me a job that will take me on lol.. im even allergic to the floresant tubes in offices. And who wants someone that has normally 3 to 4 hospital app a month. Im not getting any monies except child benefit and tax credits for my daughter.

I was finished work after 12 mths off sick. I finally got a diagnosis of lupus and fibromyalgia. As I was fighting for my pension the specialist wrote to former employers stating it was highly unlikely I would be fit to work before aged 65- I'm now 56- I sent this letter in with my ESA claim and was awarded it until Feb 14, without medicals. I am not asked to attend anything. They say it should continue after Feb but it would not be contribution based. Has your rheumy done this for you? or am I just lucky?

Good luck with your claim

im sorry to say I gave up my fight for financial help,having to beg after years of good health and working. I hadn't any energy to keep fighting the system when they kept loosing my paperwork WITHIN their building as I sent all letters etc by special delivery......we are now severly struggling to survive,selling what little treasures we own,living on cheap food and no heating...........the system stinks.

keep fighting! don't let them bully you too x

I am in the very same position and no longer have anything left to sell. By the grace of god i havent lost my home has they are helping with the mortgage. But i get no help with council tax and put my gas and electric on a meter so when its gone its gone and have to do without. We eat the bare minimum and im expected to look after my 15 year old daughter !! I know exactly what you mean... i have worked all my life upto feb this year and feel like i am punished for been ill. We should set up a campaign group...

wish we could!........

just wish they would listen and actually look at every individual case as a person not a case number. im struggling big time at work,im trying to prove im worth keeping,my husband is good and he works every hour god sends but we struggle to pay the bills and rent......feel ive failed my kids.

You havent failed them !!!!! I am a single parent and sometimes think the same but they know i have worked hard in the past and always paid my way.. we are not at fault..its the system that is all wrong. Xx

lillyanne profile image
lillyanne in reply to Donnygirl

You are absolutely right Donnygirl. The system is awful. What right have they to make people feel they have to crawl to get what they should be entitled to if they would just go by the specialists who treat us rather than the quacks at Atos. Sorry but it makes me so mad! xxxxxxxxxxxxxxx

It is unfair !!! And it pains me to know so many of us are going through this extra trauma that causes so much stress :-( im sure this is part of the reason i am starting with another flare.

Just seen on my fb page that Atos are under investigation :-)

About Blooming Time Too Donnygirl :) I'm not on facebook. What does it say?

Im a bit useless with techno but will try and put the link on here later x

photocopy all documents especially sick notes. I have appealed against my decision that i am fit for work as atos after half an hour seeing me saying i am fit for work. I have been waiting since march for a decision. They sent me a letter saying it will be 40 weeks before i get a decision and would i like to continue. i said yes. I have to continue to send in sick notes. don't know how long the doctor will carry on sighning them.

This might be the Atos investigation you were talking about.


In 2011 a few ATOS doctors were being investigated by the GMC. however think the DWP hushed up the results under the FOI Act.

This might just be an MP pretending to care but maybe if we keep hassling our MPs, MEPS, MSPs or whatever they might actually do something. Or maybe that's wishful thinking.

I'm so sorry to hear all this. It sounds really unfair. And anyway, it's so difficult to determine one's capacity to work. Lupus is simply too unpredictable. How can a benefits assessor possibly reckon with all the unknown factors? We can't do it. Our doctors sure can't do it. I don't know much about the system in the UK (it has to be better than our national disgrace of a non-system here in the States, though), but it sounds as if everyone has a lot of problems to solve. And lupus doesn't make solving them any easier. What a stupid disease!

Artygirl thanks for that article. I don't know why this has come a surprise to some MP's because there are thousands of recorded cases saying the same thing about this terrible company and the way they operate. David Cameron should hang his head in shame for the way disabled people are being persecuted in this country whilst mps are given astronomical pay rises. Rant Over !!!

Donnygirl profile image
Donnygirl in reply to lillyanne

Think we are all entitled to rant over this... the post i was going to put is very similar and it is all about how they are making disabled ppl travel so far and making judgements they are not qualified to make. Me for one hope that this company is laid off..

ya the stress sure doesnt help...

There is a site on fb called FIGHT BACK, get in touch with them for help and advice, it's all free and they have helped lot's of people make successful claims, they are similar to CAB, Good Luck and don't give up , you are entitled to be in a support group and probs DLA , and lot's of other help with your illness :)

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