I had my ESA Assessment about 3 weeks ago, and havent given it a second thought since really. The thought of them saying anything other than 'of-course you can keep claiming employment support allowance' seemed completely impossible? To me, it is blatently obvious that I am unfit to work! I am in constant, chronic pain; which I told the doctor. I have atleast 3-4 days a week when I cant even get out of bed; which I told the doctor. And I showed him all of my medical letters, a doctors note signing me off for a further 3 months, and all of my medication. Enough? Apparently not.
Today a letter has come through the post telling me they are stopping my money because they think I am well enough to work. I cannot believe it. How on earth could this happen when I told the doctor how much I suffer?
It seems I scored 0 points on the questionnaire thing. Because I can lift my arm above my head? And because I can take a message from a stranger? Oh, and I can write with a pen, or use a mouse on a computer. (These were the actual questions!!!!) BUT SO WHAT??!! Yes I can do these things, but that doesnt mean I can work!!! What do any of the questions have to do with my disease ridden pelvic cavity?
I feel as though I am being treated like a scrounger. Like my endo is in my head. I feel as though they are saying I am lying. Its such an insult. I have had the worst year of my life, and this is the result. Go back to work. I cannot itterate enough how completely impossible this prospect is. I tried and tried to keep going back to work, when I had a job, and couldnt even get through a full day! So after 6 months they let me go. Understandably. I would do anything in this world to be better and work again. But I simply cant. I am ashamed that I have to claim benefits, but I have no choice.
Obviously I will appeal against the decision... but they said it can take several weeks/months to go through the system. Several weeks/months with no money coming in. I dont know how I going to cope......
Can anyone help or advise me? Has anyone been in the same boat? What can I do?
Thank you ladies. Im desperate...
Aimee x
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Fletch
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42 Replies
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Hi Aimee.
I am so sorry to hear what you are going through. I had to go on to Incapacity Benefit as I was fired from my job because of having so much time off ill (which was devastating). I am currently waiting to hear if I qualify for ESA or will be put on Jobseekers Allowance and I am so worried. I feel exactly the same as you, I HATE being on benefits and wish so much that I was healthy enough to work (I dream of having a job!).
Please make sure that you appeal, we need to make a point that endometriosis is a disability and just cos we can raise our arms, walk up a few steps and leave the house on our own does not mean we are well enough to work!
I really hope that things work out for you and please know that you are not alone in the situation.
Hi I had exactly the same thing, they said there was nothing wrong with me and yet whenever I try to get a job and at the job centre they tell me I shouldnt be working! I got 0 on the test because I can do the things you say but I agree that does not mean you can work.
I applied for ESA Feb 2010 was assesed in June 2010 and have just not got my appeal through for March 2012. It has taken 2 years. I have gotten help from Coventry Law Association they will help with things like this if you live in the local area there will be something simillar in your local area.
Getting on to ESA is not about your ability to work it is about how much you know what to say in the interviews and how to fill in the form. The only people who can get on this without leagal help are the scourgers who know how to play the system.
Call Citizen's Advice and see if they can point you in the right direction.
Whilst you are waiting for an appeal you do still get the lower rate of benifit (£65 a week) so don't worry about that. I have also been told that if I fail at this appeal I can just re apply for it anyway.
Chin up. I was devistated when I heard back from them but it is them who are the idiots not you.
In response to this message, you say that I can still get the lower rate benefit of £65 whilst I am appealing. Well, thats all I ever got anyway? Do you get a lot more? How come? Do you live in London by any chance?
HI ya, when you pass the exam and get on to ESA you then have to attend 5 work focused interviews where they still try and force you to work. If you attend all 5 you get an extra £25 a week, this is called the higher rate of ESA. I am still waiting to have the appeal so I haven't seen any sign of this, I am not the standard £65 a week rate. xx
Im glad to hear that whilst I am appealing I still get £65. They failed to tell me that when I rang them to complain.... Good job you're here!!!! He he
I was getting £125 ESA support group. Plus extra £65 because i am Disabled on PIP. Now i am getting £121 on JSA, again higher because i am on PIP. (amounts not exact, swamped by paperwork). I had ESA cut even though my Neurological condition is getting worse. Just getting Bus to JSA leaves me in agony, and unable to move for days. A very sick joke by DWP. Does anyone know of any Legal Class Action happening. Best to all.
Hi can somebody help me here i been apealing on my esa since october last year and i was wondering would i still need to attended an assesment while i apealing
Hey thank you every so much for your reply as I am waiting for my assment ti come back and was stressed I would be left with no money if I was turned down but I learn I can get 65 pound a week if I am at least now I know if it happens at least I can eat until appeal comes in you have just saved a life tonight
I feel a bit calmer today then I did yesterday. It was such a blow! If I'd have gone into the assessment and acted out an oscar winning performance like Im sure many do, Im sure I would be fine! But I thought telling the brutal, honest truth would be enough. It seems that all they go by is the questions in the questionnaire, all of which I am fine with. I wonder though; where was the question about how much pain I am in in a day? How many painkillers do I have to take to get through a day? How I sleep? Can I exercise? How do I get on walking? Can I stand and cook a meal? How often I bleed? How that effects my day? Whats my pain on a scale of 1-10? How it effects my bowel? How it effects me when I urinate? How it effects my digestion? How have I had to change my lifestyle because of the illness? How often I leave the house?
If they's have asked questions that are applicable to an endo sufferer, I would have got a different result. But no, I was asked if I soil myself, and if I can pick up an empty cardboard box. I answered yes. SO OF-COURSE I AM FIT FOR WORK??!!??
Starri, I cant believe it took 2 years for your appeal to go through. This is such a depressing thought. I dont know whether ive got the fight in me. But then, I have no choice, so i'll just have to roll with the punches.
I'll get myself down the CAB office and see if they can help.... sigh. Why does if have to be this hard?
Hi Fletch, where i work they have just stopped paying me ssp after 6 months, im going to the job centre plus tommorrow to see what help i can get.
Im sorry your having this terrible time, its so not fair when you see the scroungers getting EVERYTHING. Its not our fault is it, we didnt ask for this illness, ive worked hard for 20 years since leaving school, this is the first time ive asked for help, im dreading it.
I hope you get good results. All the best. Sarah. xxx
i know a couple of people who are playing the system and you wont believe the stuff they do , it gets me so mad when genuine people who tell the truth get told there fit to work, my advisor at the job center put me on two week signings with reduced pressure because she said who is going to employ you when your awaiting two operations and can barely walk. she even surgested i go back to the docs and see if she can write me up two different conditions and reclaim esa
You should be fine for the first 6 months. Its after then that they question you a bit more, and get you to attend an assessment. Which in itself is absolutely fine? I wouldnt expect the government to give people money every week and not ask any questions as to why! But... their form of questioning is a lot to be desired.....
My advice? If they ask you if you can walk... say no. It appears it pays more to lie then to tell the truth.
(ignore me though... Im just upset because they have stopped my money and I am sick of fighting)
Like you said... We didnt ask for this awful disease?!?
Sigh...
Thanks for your email xxx
Hi Aimee,
I am so sorry to hear you are in this position - sadly it seems to be hard at the moment for ladies with endo claiming ESA. It just sounds very difficult. As well as contacting CAB, I would also email your local MP and explain your whole story, put in all the details so they understand exactly why you are in this position and ask for their support. It isn't right, they should be treating people as individuals instead of some sort of box ticking exercise. It is very worrying and I hope things get successfully resolved for your soon - keep fighting, I know it is hard but keep telling them what it is like for you with your endo.
Thankyou for your response. Your advice is appreciated. I think I will contact my local MP... I 'ummed and arragghed' about it, but you're not the only person that has said to do it, so I think I will. How much he can do is unknown to me, but it is worth a shot! I can but try....
I have written a 5 page long appeal letter to the jobcentre people, with points outlining exactly why it would be impossible for me to work, so hopefully they will see that I just cant. It just feels horrible to have to justify myself. I cant help but think that if I had cancer, there would be no questions asked. Is that an awful assumption? I feel bad saying it, but I feel as though I am being punished because people are not aware of how destructive Endometriosis is. It's so sad. But I shall try and remain positive and keep fighting them against it.
I have found out that while I am appealing, I will still get some money coming in, so atleast I dont have to worry about how to manage with nothing.
I'll get there anyway.... I hope! I'll let you all know of my outcome
I am on ESA I went to my medical and failed then appealed and failed I then went to tribunal and I won. You need to break the endo down in my case it was the endo, the depression the endo gave me because of chronic pain,incontinance due to it being on my bladder and bowel, chronic migraines because of the hormones and so it goes on you see when you fill in their forms you just put endometriosis down you have to separate it into how it affects you also if you do have depression with it contact MIND the mental health charity they have advocates who will go to medical and or tribunal with you hope this helps
Hi I was just looking for info on medical assessments and I thought I'd drop a wee comment cause you raised a valid point. I have Crohn's Disease and when applying for ESA I noticed the questions can you stand, can you sit, can you use a pen, keyboard ect....I'm like yeah....don't mean I'm fit for work....yeah I can do these things but normally while I'm on the toilet lol! I hope you appealed and got sorted!
Hi, thanks for your comment.... I appealed, and it is still in the appeals process. They said my tribunal date might be around Oct/Nov time. Ive written to my local MP to ask for his support on the matter, and Ive got a letter from my specialist that 'hopefully' will work. I'll let everyone know how it goes. Fingers crossed x
I found this very helpful, you should get some points, (although you need 15 overall to qualify) for example if you can't stand/sit for very long or prepare your own meals x
Hi Fletch - I am the same as you although I dont suffer from edometriosis I suffer from something similar. I feel the same as you in that yes I can pick up a pen, make a cup of tea, take a message from a stranger and all the other questions that dont actually prove you can work, I can do most things for 5-10 minutes, but to do anything for longer than that would absolutely knock me out or cause endless pain, but it seems that for people like us there is no way of passing this assessment as they dont take any of our circumstances into account. My tribunal is coimg very soon but I dont hold out much hope of winning it, as it doesnt cater for people like us. It has all been so stressing and making my condition deterioate. I cant offer much advice Im afraid as I havent been able to get much help myself. Good Luck to you anyway.
Sorry to hear about your difficulties.There is alot of legislations involved with ESA and it goes beyond the points system.There is a booklet given to health professional which outlines the points system.A consultants letter will be the best way of representing yourself at Tribunal and the panel which is only small wiill be very sympathetic in court.
Unfortunately we are in a recession and the government is trying to reduce the budget on benefits spending so they want to pay out only those in extreme need.It must be awful to be in chronic pain and to have to go through the process of representing your needs.But peservere,you just need the medical evidence to support your claim and somethimes it needs a senior medical professional to support you.Good luck and don't loose heart x
ye me i suffer from chronic asthma, severe neck and back pain, depression ,anxiety and when i went for the check at ATOS the most criminal company in the UK in my opinion. i took all my medication with me which is a lot. and i was only told to lift arm up sit down talk and thats it. THEN i get a letter from then telling a bunch of lies saying i was carrying a large bag and not out of breath. thats it. i never carried a bag, i was tottaly out of breath.
they fabricated everything!!! its criminal. i was then put on JSA and left without advice or anything, its causing me such stress and my depression in through the roof. i know i cant hang on to a job with all my problems. its shocking that no one cares, they left me without money, all they said is claim JSA or do without, its beyond belief how cruel and nasty they really are.
Hello everyone I have just read all the above comments and must say that if saddens me what the system has come to. I had my Atos appointment 10 days ago and just received a phone call saying I will get a further phone call this coming Friday about my ESA decision. I guess I should expect the worst. Been Hypo for 20 years had two root nerve procedures for cervical spondylosis, awaiting foot operation for osteoarthritis after cortisone injections failed, depression etc etc. I had a lovely lady at the interview but I think that you really have to been very very poorly/disabled somehow before they will even consider anything. Oh you can walk, talk and stretch a bit all seems well to us, what about what is going on inside? I will wait and see but I am not holding my breath!
The best of luck to you Marmaris. I know more than most what a battle it is, and that's not even an exaggeration. It truly is a battle. It's emotional, exhausting, upsetting, unjustified and unfair. But, I'm proof that women can beat the system. I took my decision to a tribunal and won. So, never give up. If they say no, fight it. You've got tonnes of help and support on here from everyone if you're having a hard time with it.
Click on my profile and read about how I won my case. It's on one of my old posts. You may find it helpful,
Many thanks for those kind words Fletch, I have got to the point now of not caring, feeling very low and almost waiting for a sentence to be put on me for the phone call tomorrow. If I have to go back on Job seekers so be it, maybe that is what I need a job. Only they offer me a carers job, hard at one's age in this ageist world that we live in. xx
Hi Fletch I got 0 points yes 0. Back on the job seekers today. Gutted and the report is laughable you fail at the first hurdle as they see you walk in. They have an answer for everything. I am awaiting hospital appointment for my foot in January 12 (Birthday), and if bad and surgery needed i shall be applying again. I am not appealing as I feel that they would just shoot me down. Very disheartened with it all.......
Please try not to be disheartened, although I do completely understand why that would be your initial reaction. I got 0 points too. I remember receiving my letter and breaking down crying. My boyfriend picked the phone up and rang them; shouting at them at how wrong they were and how disgusting their decision was. It was the first time in 5 years I'd ever seen him really lose his temper. Do you have anyone with you today who can be a shoulder to cry on? You really need some support today. I know how awful you feel
But once their ridiculous decision has sunk in, give it a couple of days and rethink appealing. They won't shoot you down, I promise. You've been through the hardest part which was the assessment. The appeals process is very straightforward and surprisingly, you don't feel as judged as you think you will. I guess that's because it's out of Atos' s hands and its them who have the flawed system. But they pass your case onto an independent tribunal and honestly, they're not half as judgemental. They just want to hear your side of the story. They do listen. They just want to know in your own words why it is you can't work. And a lot if it is asked for in writing, so there's lots if time to prepare and say exactly what you want to say. My document I sent them was about 15 pages long! I sent them doctors appointments (as there were many), doctors notes, my doctors records, I asked my specialist to write a short statement about her opinion on my ability to work so there is lots you can do to support your case. It's not as scary as you think it's going to be. The only downside is that it takes AGES. From the first phone call from my boyfriend until the date of my tribunal was about 18 months. But I was paid basic ESA while I waited and when I won my tribunal I was paid the difference of the highest rate if ESA.
The judge at my tribunal was brilliant. Really understanding. He said women with Endometriosis always score 0 in their assessment. It's impossible for us to score any points. He recognised that the system is flawed for us and urged me to fight it. I volunteer for Endometriosis UK and part of what I help with is this. Tribunal help.
So if I can say anything to you, it's don't give up. You've done the hardest part. Honestly, the assessment is the worst bit. And you were never going to get full marhs because it's impossible for us. So now that's over you can move forward and prove to Atos that they're wrong. Tell them why you can't work. Tell them what your days are like. What your pain is like. How often. How much medication you're on. What the side effects are. Etc etc.
I hope that you know that just because they've said you're fit for work, doesn't mean that you are. Don't doubt yourself. You know how you feel and what you're capable of. And try not to let it get you upset (hard I know). Just because they've said it, doesn't mean it's true.
Hi Fletch thank you for your kind words. I am a bit confused about when you say you received the basic rate of ESA whilst you were appealing. I had to go on jobseekers. What happened was the lady rang me on the friday last week 5 December and told me that my ESA had ended and that my Jobseekers started the 6 December. I have been for first signing today but have further interviews and signing. The lady at the DWP said I could go back to my GP and reinstate it ie come off jobseekers if I apply again for the ESA with a NEW ailment. That will be my foot, and I got the jist of this from the lady who phoned me from ESA. So my plan is to go for the consultant appointment on 12 january and await the outcome, go back to the doctor and tell her about my pain etc, get a sick note and reapply. Fed up of it all they have no compassion. This is what I have, cervical spondylosis neck, had two root nerve procedures, long term hypothyroidsim and the myriad of ailments that go with that, and osteoarthritis (although awaiting further results after consultation), in the left foot, oh and yes last but not least Depression. Produced all proof of consultations, procedures and medications. Felt as if they thought I was making it up.
Sorry for the late reply. I had a bad week with my pain last week.
So, you need to check out the website at the bottom. I've done a bit of reading, and it looks as though the procedure for appealing (and the whole ESA system) has changed since I was last on it, which is why what I was saying didn't make any sense to you. It's different today. It looks as though you have to call them and ask for a " mandatory reconsideration". And then take things from there. I think I'm right in saying that you still shouldn't be claiming jobseekers though if you are not well enough to be working. When you go in to sign on do you tell them you're not well enough to work? Or do you lie and say you're looking for work? (In fear of getting thrown off JA too)
My advice to you is to call your local Citizens Advice office and go and speak to someone. They'll be much more upto speed than I am with the procedures as they stand today. You can appeal though or at least ask for someone else to look at your case and reconsider the decision. Thats a start atleast?
Hello Fletch sorry you are feeling in pain, and thank you for getting back to me. I went to the DWP and have registered but told them about up and coming appointment for my foot in January. I cannot life or stand for long. I am seeing my Doctor tomorrow and asking her advice. I know you can ring them or write. I will see what the doctor says I am so afraid of not getting any money and it messes up a lot of things. I only have until January 4 now to appeal so will see with doctor. I may ride it out until January see what the hospital intends to do with my foot and then re apply. A kind lady from the DWP informed me that I can go back on ESA if I have a different ailment, which I have my foot. When I remember the call back from ESA and results of ATOS that was what the lady was telling me. So I will go down that road. Feel so tired with it all, and I just hope all will go well for me. Wishing you lots of healing thoughts. I will let you know how I get on. Take Care. Marmarisx
God, it sounds like it's all changed a lot since I was claiming in 2012/13. They've really come down hard on everyone. I don't know what I would have done in your position (or if I need to claim again) because I don't have another ailment. My endometriosis is enough!!! The 'old system' seemed much fairer. This can be another reason to add to the long list of why I hate our Tory Government!!! I hope they're out next year I really do. There is no way in the world that it is fair to force you onto Jobseekers, abd actively seek employment when you're not well enough to work. It's disgraceful. Anyway. ... That's my rant over.
Let me know how you get on. You've made me realise I need to become more read up on this new system. It sounds very complicated!
Hi there they have done the same to me definitely appeal against it also ask your doctor to write you a note I know this costs but it saves it going through tribunals so it is worth doing or go to citizen advice and they will help you with everything I hope you get it sorted these people are vile for what they do.
Also if you can get medical evidence like going to hospital that's definitely worth doing because it proves your illness
I have suffered with a bad back for over a year im currently awaiting a scan the pain is just getting worse every week to a point where my medication isn't working.
And all we've left with is to suffer well it's not fair and it's wrong of them to do this
Hi I am 24 just diagnosed with multiple sclerosis last sept I lost my vison in my left eye my balence I suffer back ache neck ache leg spasms dizziness chronic pain carnt sleep always up to pee in the night cos of bladder issues alsorts could be here for ever o work since the age of 17 and now I after try and claim for the first time. I have had a ESA and PIP face to face meeting as my money stopped March 17th. And guess what I scored no points I had to use my crutch I was off balence I was upset I gave them my daily life struggles I even had my ms and Nero letter appointments but they didn't even ask to see them. I feel ashamed too ad rather be at work and healthy than deal with all this crap! But unfortunately that's just not the case. I even had to see an health consultant and he even srated in that that I am not fit for work as I have only been on medication 4 months I self inject 3 times a week I am on copaxone amd it can take 9 to 12 months to get into your system and these medications for multiple sclerosis do not make you better or take the symptoms away they are to space out the relapses as everytime we can be left with damaged some may repair bit not fully amd can take months even years or never and we will never get better as time goes on it progresses. I bet PIP will say the same as ESA too am on my arse basically and yeah I still live with my mam she's having to pay for everything now and it makes me feel so ashamed I need help! I have no income what so ever I know how you feel it's S**t! X
I'm not making my statements to people dying of cancer. I'm making statements on the Health Unlocked Endometriosis UK Forum so I'm unsure what's lead you to this thread. It's a thread aimed at women with Endometriosis who are too having problems with the ESA system because of their pain and as you will see from the many, many responses on this conversation, there are hundreds of us in the same boat. I can assure you that my brain was engaged when I wrote what I did, as I'm sure were the brains of everyone else who is struggling and have commented. I'm not a horrible person and don't appreciate your nasty comments.
I'm truly sorry to hear about your situation but it doesn't give you the right to be cruel. Just because I don't have cancer doesn't mean that I haven't suffered. I wasn't making any comparisons between what I'm going through and what you're going through so there was no need for you to make that comparison. People can suffer without cancer. People can have problems without cancer.This is an Endometriosis UK post and I'm entitled to comment on it because I have Endometriosis. As you do not have Endometriosis I'm not sure that you are as entitled to comment, especially viciously.
I wish you all the best. This is obviously a very difficult time for you and I'll pray for you.
My comment to you was a knee jerk reaction to someone making a comparison to cancer. I suffered with endometriosis for years (I have now just about managed the madness of menopause). I know how you suffer and its a truly horrible disease. Believe me the benefits system isn't any kinder to cancer sufferers. I apologise for the hateful things I said, I too need to engage my brain before 'letting rip' Forgive what was a truly awful day, 2 times cancer and now another investigation- I shouldn't have taken it out on you, wrong time and place.
I too wish you the best. Not a hater just totally fed up.
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Please can somebody offer advice as I don't know what to do! :-( 
Does the bladder pain feel like a water infection and what can I do to ease the symptoms!
Feeling fobbed off after 1st gyne appointment
