ESA Stopped!!!!

Please bare with me, this cld be a long post. I'm a 62yr female. I was diagnosed with sle, sjogrens syndrome, raynards, severe anxiety, uncontrolled blood pressure & depression & the list keeps getting longer. In 2006 I had surgery for breast cancer, followed by 15 sessions of radiotherapy. Unfortunately, I had unusual reaction to the radiotherapy. It caused the breast to mummify, damaging the whole upper quarter of my chest. I had to have a free tram reconstruction & numerous surgeries. All that took me to 2013 when I was diagnosed with the autoimmune disorders. In all that time I managed to work, but things got increasinly more difficult with reaction to uv lights/sun & aches & pains. I was increasingly more & more of work due to all lupus flares etc. I was eventually dismissed in May this year due to incapabilities due to ill health. This was extremely upsetting at the time, but has taken a lot of stress of me. Oh forgot to add that boxing day my home was flooded & I've only just got sorted with that. Anyway, I'd been claiming esa since march last year & I've just had the medical assessment a few weeks ago. I had the medical done at my home due to anxiety & I cldnt get to the medical assessment centre because of it been height of summer & my reaction to heat & uv light. Last Thursday the DWP phoned me to say that I hadn't passed the medical, my esa money was been stopped straight away & I was to sign on at the job centre! They are sending paperwork to me which explains why they decided I'm fit for work. So as yet I've no idea why they think I'm fit for work. I'd sent in letters/evidence from 2 consultants & my gp explaining my condition & how it effects me on a daily basis. The same paperwork I used to get pip! I said I cldnt sign on at job centre & declare myself fit for work because I'd be lying. So now I'm left with no income, no housing benefit or council tax benefit. I've gone into a bad flare & can't stop crying. I spoke to my gp the same day & she's given me a sick note with new illnesses on because my sick notes that I was sending to DWP with sle etc on are now useless because they deem me fit to work with those conditions. I saw my dermatologist last Friday & she's given me more written evidence on the severity of uv light on me. That I'm on strong toxic medicine's & creams & there compromising my health insisting that I find work! The whole system stinks! I not sleeping very well now, not interested in eating, can't concentrate on anything & feel totally worthless. I know I need to find strength to fight this situation our government has put me in, I do not intend to lay down & die. But it's so difficult to muster the strength to go into battle. Thank you & well done if you managed to get to the end if this long post.

38 Replies

  • I'm so sorry - there is nothing I can say that will make it any better is there? Just know I DID read to the end and I'm sending you a virtual hug. xxx

    This gubmint has destroyed so many people with their sneaky privatisation of social services - it is utterly disgusting. Quite how they think people who are seriously ill with multiple conditions can go from being unfit for work to healthy overnight - or even in a few months - defies belief. And they are doing their darnedest to remove decent healthcare as well by stretching an already over-stretched system even further to cover 6 days instead of 5. Because none of them need to use the NHS I suspect. Or claim benefits.

    The awful part is that if you were just 2 years older you would be retired by now.

  • Report on the news you need to appeal, as the agency that was hired to do these test have made big mistakes ,

  • Do ask for a Mandatory Reconsideration and Appeal, Appeal Appeal! I think whilst they are looking at the evidence again that you can get your housing benefit reinstated and some other payments.

    The Citizens Advice will be able to help you further and your council will have a Disability Advocate who will represent you for no cost.

    If you haven't done so, have a look at the Benefits and Work site, (google it). There is a wealth of information there. Also look through the blue pinned posts on the left, "Work and Benefits".

    The DWP regularly refuse your first application, I think it is to see if you have the stamina to go on!

  • Hi bluebell, thanks for info on Benefit's & Work site. Just joined, looks as if it'll be very helpful 👍

  • When was this ? I am going through same thing at the moment my report was full of lies for example they said I had heard a conversational voice at 3 metres with BOTH ears and wasn't even wearing a hearing aid . I had a type of brain tumour and ear connection to the brain was cut to remove it , I later had my eardrum removed all together, a hearing aid is no use if you don't have an eardrum.,and they said I heard a conversation in BOTH ears , they had proof about the surgery and in fact wrote in the report that I had had my eardrum removed two pages after claiming I had heard in BOTH my ears , how do they get away with making up rubbish.

  • I'm completely deaf in my left ear and they said I heard perfectly fine. Thing was, the accessor stood only feet in front of me! If she'd stood on my left side and spoke I wouldn't have heard a thing! I can't wear a hearing aid because it picks up to much background noise.

  • It's a joke , I sent a letter from my ent surgeon with my mandatory reconsideration nothing makes any difference the statement they made about my hearing was ridiculous as they had it on a hospital letter about my surgery and how the hell can anyone know what someone has heard through their ears , the problem is that these people are complete morons who know nothing , why should people be assessed by people who know nothing about the disease they are reporting on its ridiculous, why should they say we are fit for work when the doctors treating us say we are not , they are not just calling us liars they are saying our consultants are liars aswell, in actual fact it's these decision makers that are liars .There was an article in the paper recently about an ex nurse who worked for one of these assessment company's who got sacked for saying on Facebook that a person she had assessed that day was taking the piss , these are the sort of people we have to deal with . A friend of mine also knew someone who did that job for a while but left because she didn't like what they were expected to do .

  • Hi smudge contact the welfare rights team at your local council they sorted things for me when I was in a similar position to you .

    With thier help it got fixed with very little stress for me and they will get the best financial

    Outcome for you .

    Take care

  • It is despicable that the government puts people who truly need these benefits into such positions. I fear the day that my illnesses get the better of me, and they will. Venting your frustrations on here will help, if only for the time it takes to write. I have no advice, or ideas or positive action you can take, but take each day as it comes, unload your burdens onto your loved ones, it's what they are there for and would want you to. And appeal!! I'll have you in my thoughts and hope things turn around for you

    Hayley xxx

  • @smudge 1980,

    Horror story.Go make an appointment at the job centre. Go with carer and when they ask what sort of work you fit for they have to log it and report back how they are able to help you seek work.In your case it will only reads unfit for any employment and this has to be addressed by them. We know you can't , they Know you can't . you know you can't but you unfortunately have to go through this procedure to get back to where you were.They will indeed point you back to esa.

    Keep strong, the system is geared up to make us feel helpless and to make it be as difficult to access what is available almost seem impossible, the truth alone will overturn the outcome , hang in there girl --------I don't know if you have access to Shelter, they can help with the appeals process and immediate money issues,


  • Appeal appeal and appeal again.get local councillor and mp involved.this is totally unfair after all you be been through. The amount id addicts that get signed off and you who have worked and been seriously ill can not beggars belief. At least you have supportive health professionals backing you.I think you can get reduced payments while appealing.I no it's not great but fight them and use every resource available.local social work can point you in direction of disability advocate. Hope you get a good result in the end. Chin up !

  • first you have to request a mandatory reconsideration

    this usually comes back unchanged, but you have to do this before you can appeal

    tell housing benefit and they will still pay on the grounds of nil income

    you have to sign on during the mandatory reconsideration,but if you tell them that you are only signing on pending an appeal, they will reduce your job search responsibilty

    once the reconsideration is done,if it is not in your favour you then go to appeal

    once you request appeal, you can then go back on esa assesment rate untill the appeal is heard

    sorry for all the bad spelling

    Extremely foggy

    Good luck x

  • How much is esa assessment rate do you know ? And is there a disability component if you are receiving dla or pip x

  • assesment rate is around £72 ,and the disability premium is not added

    If you win your appeal,you then get put in either the wrag or support group,with support gruop the premium is added

    Also the premium gets backdated

  • Thank-you x

  • Thank you to everyone for all the help, support & suggests.

    Latest update on an extremely stressful few days, my gp has doubled my dose of antidepressants, so hopefully they'll kick in soon & help to calm me down. When the esa phoned with their decision last wk I was in such a state I'd forgot to tell them I'd been admitted to a&e a few days after the medical assessment with very high blood pressure & ectopic heartbeats. My heart felt like it was doing back flip's! One if my beatablockers was increased & I've been referred to cardiology for a 24hr heart monitor reading. I phoned esa this morning to tell them about my visit to a&e & spoke to a decision maker called Dave. He said that the doctor that assessed me had wrote that on the day of the medical my blood pressure was high & it was noted that it was uncontrolled! He, Dave, took the decision to over turn the original decision & put all my esa payments back to what they were. He said that I can stop worrying & he'd send all paperwork telling me what to do next. Basically, he's taken it out if my hands & has extending the time for me to get extra evidence. Also I've just received the paperwork explaining their decision. I got nil points! Not once has it mentioned my lupus etc. Not once has it mentioned the effect of uv light etc. Nor the fact I've spent most of the summer indoors, behind blackout curtains or the pain in my bones & skin from uv light! Not even that my blood pressure was high on the day & I was advised by the medical accessor to go see my gp!! I cld go on but this post is long enough already. I just cannot believe what I & others are been put through! Don't think this is over with yet , but at least I've got time to get into my battle armour 😉

  • I've also had a recent run in re ESA and my GP wrote a letter to them, it cost me £24 but it worked.

  • You were very lucky they have had numerous copies of letters from consultants etc from me and it's not made any difference at all , they just lie , fortunately I can easily prove one blatant lie they put in my report when I go to appeal.

  • That's fantastic Margaret! I'm really thinking of getting my mp involved. It's finding the energy and strength to do battle. My gp this morning said their willing to give me more evidence on my health and how it affects my daily life. The medical assessment is all wrong for certain conditions. Pleased you won your battle ☺

  • Hi I am going through exactly the same thing as you at the moment, I got zero points at my assessment a complete joke considering my lupus and other conditions and they had consultant letters etc , I have seen the report and it is full of lies which is what they are doing , you must apply first for the mandatory reconsideration and if that fails which it has for me go to appeal with the help of your local council welfare rights team , do not let them get away with it , they hope that people will not appeal because of the stress YOU MUST .I am claiming jobseekers I am 56 and not a cat in hell's chance of getting a job with my medical conditions, they know that , it's all about money to them and it's cheaper to pay jobseekers than esa , good luck you are not alone x

  • Yes, the system really does stink at times. As per other replies, you need to get professional support on this one i.e. Citizens Advice Bureaux or a similar support organisation fulfilling such a role in your area, and you then need to work together to appeal. A decade ago I went to appeal re the then Incapacity Benefit and the advisor told me that was little chance of being successful without the assistance of someone who knows what they are doing i.e. an experienced representative from CAB or similar. I won my appeal, thanks to the wonderful woman who helped me - and, by god, was she impressive. She went straight in with 'we are appealing on points x, y, z, etc' and via our preps we knew exactly what I was going to say in terms of each.

    I really hope this goes well for you.

  • Hi there, this is awful, BUT you can still claim Housing Benefit - although they do not tell you this! You need to go to your local Council and get a NIL INCOME form I believe - although how this works with Universal Credit, I have no idea?? Wishing you the very best of luck xx

  • Please find the strength to go to citizens advice or phone them and beg them to come to you.let them contact your local mp and get Him to take your case to houses of parliament.

    That is what I may have to do if P.i.p come to my 2nd ASSESMENT to try and take my car and £200 per month.high d.l.a

    I am Medically clinically had s.l.e plus lots of other issues.long time.Now just want to end this sister is paraplegic cant move a muscle in a nursing home.i

    Cannot tell you how Sorry I feel for you.norma.x

  • Thank you Norma for your concern, it means a lot to have your & others support. After speaking with the decision maker today & he's reinstated all esa I feel little calmer. Things are still not finalised & I've still got to go through it all again. I've decided to give myself a few days of from the worry, but I've made a decision that I am going to speak with my local mp. This treatment of disabled people cannot go on! It's made me feel worthless & what's the point in taking highly toxic meds to have a bit of life. All sorts of thought's have gone through my mind, but I'm not the sort if person to be bullied. I hope you find the strength to fight also. We are worth more than how they are making us feel. Don't give in

  • Good to hear re the ESA. And I hope it stays that way! I'll be rooting for you!:)

    The demonisation of sick and disabled people that seems to be happening all too frequently at present is quite appalling, I feel. One time when I was in hospital the hospital radio DJ came round to see if people had any requests. I got talking to him and he has cerebral palsy but, because of him doing hospital radio for 2 hours a week, he was having his ESA reviewed. He was in a complete state and told me that he had missed the previous 3 weeks' shows due to being ill caused by the stress of it all. His is but one account that I have heard.

    Anyhow, rant over, and very best wishes to you!

  • Thank you MrsMouse. There must be a better way forward to access the disabled. I've have numerous letters from 2 consultants & my gp saying how my many conditions affect me. Surly you wld think this evidence wld be enough without having to go through a medical? But apparently not. The government wld rather spend more money on employing so called professional people to overrule our medical teams that look after us, those people that know & see us.

  • I know... Although of course the DWP assessors and the docs one sees at the medical are having to work to the government's criteria for assessing one's fitness to work. And there, I think, lie so many of the flaws. The criteria are facile, reductionist, and simply not fit for purpose.

  • I'm so sorry, I also wish I had something more helpful to say. It's a travesty, ludicrous to say and put you in such a burdendome position. Of course you are depressed--it is part of this condition anyway and now further shame from the system and feelings of worthlessness. I fight them every second for similar reasons, though not the same specifics. I am also in limbo, I can't work and have very little to live on--I honestly don't know what we're supposed to do. Though I don't want anyone to suffer I do wish the people who make these decisions and cast judgements had to live in our bodies--not for one day for years just like we do--then get back to us with their assessment. You are the first person I've heard who was diagnosed with lupus after getting radiation treatment for breast cancer, that is exactly what happened to me. I didn't have the mummified tissue and am so terribly sorry you had to endure those surgeries. But years later the scar itches and flares like it is still healing and I have the same reaction to sun and light, it is almost unbearable. I did have ulcerative colitis before that which is auto immune but after radiation and the onset of lupus I have never been the same. I don't know why Drs won't acknowledge the connection it seems so obvious. It is so disheartening to lose strength when we need it the most to advocate for ourselves. I had no idea these years of dr visits would yield only vague answers and usually open up other problems, the financial burden, the social stigma, the loss of friends and support, the condescension from the medical community. But it sounds like you have some Drs pulling for you and with some persistence you will get through this battle. As you find strength you can try to work toward the next step, the suggestions people posted, even though it seems impossible right now. You are certainly not alone, and you have no reason to feel worthless. Shame on the system and people who make those decisions, not you! You are in my prayers.

  • Morning alicemoon, thank you for your reply & support. If we cld transfer our conditions on to these people I for one would love to access them & tell them their fit for work! They even had me thinking that it's all in my head & I'm going mad! I would love to go bk to been employed. I've worked hard all my working life, like many of us. And I've lost so much since I'm not able to, like friend's, social life, making plan's etc the list is endless. And you end up feeling like your on the scrape heap & along come the government & kick you in the teeth. Sorry, went on abit of a rant then 😣

    I don't think I explained properly about my diagnose with lupus etc. My rheumatologist thinks ive had lupus since my son was born in 1980, but think's the bad reaction to uv was exasperated by the radiotherapy. I had no problem with sunlight or indoor lighting till then. In fact I was a big sun worshiper. Been pale is the way forward now 😉 But I too, have never been well since.

    Thank you again for your support.

  • Hi , just been to sign on at jobcentre today , I gave a sick note for 3 months to them last time I went and the man I saw then said I wouldn't need to go every two weeks because of the sick note , the woman I saw today said no it's not as simple as that . She accused me of being negative at everything she suggested with regard to work . I told her about the dangers when you are on immunosuppressants so she said well you could work from home , suggested I do things like Avon and betterware , no one makes a living doing that they are what people do to boost their wages from another job it's not guaranteed pay what do you do if noone buys anything and what makes her think I am fit enough to go round delivering brochures and then collecting them and then delivering any orders . When I said I'm obviously going to have problems when I list my health issues on application forms she said just stress what you can offer them . Also she denied that my age would be an issue , I am 56 .when I told her I was asked to leave my last employment because of my health she said well that obviously wasn't the job for you .I have heard many stories on here from people having problems with unhelpful employers .I wasnt being negative I was being realistic unlike her .

  • Beggers belief buffy 😤 That's why I wldnt go to sign on. I'm unfit for work & I'd have been lying. I can't comply to what they want just to bring down the employment numbers by one person. In may this year I was dismissed on the grounds of "capabilities due to ill health". My employer cldnt accommodate my conditions & guarantee my health & safety. The job centre are asking you to put your health at risk?

  • Exactly I was asked to leave my job 4 years ago because of my health benn on esa ever since but they have just stopped it. And told me to claim jobseekers, I have no choice I would have no income if I didn't do it x

  • I'm sure I read that the job centre had to accept your sicknote if it's got different conditions on it to your old sicknote. Example; old sicknote may say sle, Sjogrens, depression. New sicknote cld say anxiety, reactive depression, high blood pressure. Worth finding out about buffy.

  • I have not had a sick note since I lost my job 4 years ago but they both just say lupus, not really helpful my gp she only gave me a sick note because she didn't want to write a letter for my appeal. I don't have much to do with my gp surgery as I am at the hospital every 4 months for rheumy and Renal check ups , gp from what I can gather don't even read the letters from my consultants and most gp S are clueless when it comes to lupus

  • Hang in there - The system is massively flawed, I know someone who has some pretty serious epilepsy, and sometimes he gets told he is fit for work too, go figure... It's this whole point-scoring system, if you don't score high enough then tough tits, there is no humanity involved in any of the assessments... Keep appealing, and keep getting evidence, they will be forced to back down at some point!

    And if I'm not mistaken, you should get back-pay for the time which your benefits were suspended...? Which I know doesn't help right this minute, but at least it means you'll be able to treat yourself afterwards right?

    Looks like more of us got to the end than you thought :) Virtual Hugs all around!

  • Thank you Preywinder, all this support & understanding is fantastic & just what I need to continue this fight. And fight is what I'll do!!! I feel their asking me to commit some sort of forgery putting my signature on a piece of paper saying I'm fit for work when my gp has been signing me unfit for work since Nov 2014! And yes your right, they will! owe me back pay from my 1st claim of esa in march 2015. If I get put into the support group it's a higher benefit. Thank you again for your support 😀

  • Hi , I was just wondering how you are getting on with your esa claim , have you been for a second assessment yet and if you did how did you get on ? I had my esa stopped at the end of Aug this year , zero points, mandatory reconsideration was unsuccessful and on 1st November sent appeal forms to the courts , meanwhile I had complained to maximus about the lies in my report. Yesterday a decision maker from dwp phoned me saying that maximus rang them and said a new doctor had looked at the report and had said it wasn't right and so they have put me back on esa for the time being and I have to go for another assessment. Not looking forward to it at all after all the stories on here so many people getting zero points, what's the point of another assessment when they all seem to be as bad . I think I will have this one recorded although there was someone on here who had their assessment recorded and they still lied in the report . I hope your esa has now been reinstated permanently.

  • Morning Buffy, I've been put into the support group for maximum length of time, 3yrs. A decision maker overturned everything & made it permanent when I'd told him days after my assessment I was taken into a&e with very high blood pressure, bad palpitations & chest pain. At my assessment, the doc advised me to see my gp as my blood pressure was high after 2 readings. When I received my assessment paperwork none of this was mentioned! The decision was overturned over night from nil points to maximum points of 15! I've had no explanation. I had my assessment at home & had it recorded, all 2hrs of it & had loads of supporting evidence. In my opinion, none of this was read & when it'd gone to the decision maker he's listened to the recording & read all of my evidence. Even though it's been a couple of months now, I still don't trust that everything is fine & I'm going to be left alone. You must be worried sick about it all & I'm sorry to hear your still going through the traumas of it all. Please make sure you have your nxt assessment recorded & have someone with you. For you to have another assessment makes me think the 1st one is not standing up to the evidence they need to justify the 1st decision of nil points. Good luck Buffy & please keep posting. It helps to vent. If you need anymore information you can pm me x

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