"Never Give Up": Disabled Teacher Scores Victory Over ME/CFS Discrimination in the U.K.

Discussion in 'General Discussion' started by Pike, Jun 24, 2017.

  1. Pike

    Pike Member

    The Brown Envelope

    I recently received the dreaded brown Department of Work and Pensions (DWP) envelope. Fully expecting yet more bad news, I tore open the envelope, ready to rip up the letter and fling it in the bin. The letter informed me that in light of my second complaint against my second assessment together with new medical evidence that the DWP was now awarding me the enhanced rate for the daily living and mobility components of Personal Independence (PIP). My 8 month battle against institutional discrimination by the DWP had finally paid off.

    I believe that my struggle against institutional discrimination by the DWP was mainly down to a no-surrender/never give in attitude. Let's face it, the DWP's war on the poor, a disproportionate number of whom are disabled, is part and parcel of the Tory government's class rule on behalf of the richest one per cent in society. I saw my struggle to obtain PIP as part of this class struggle against an establishment that seeks to impoverish the poorest sections of society while transferring wealth to the 1%.

    August 2016 - The Beginning

    My story begins in August 2016. I already had the lowest rate of the mobility element of PIP due to my neurological illness. My illness, which is a form of low grade brain inflammation and mitochondrial dysfunction called ME, had gotten a lot worse. My wife was having to cook and prepare all my meals, having to push me round in a wheelchair, etc etc. I had been on sick leave from my job for several months and knew in my heart of hearts that it was very unlikely that I would return. I told PIP that my illness had gotten worse and wanted a review of my award.

    Pushing for certain answers, the medical examiner was clearly biased
    In early November my wife and I went to the local PIP assessment centre by taxi, which dropped us outside the entrance. After a short wait we were greeted by the health professional who was going to carry out my assessment. Once inside the 'consultation' room she started firing questions at me.

    I tried in vain to explain how my illness affected me and asked for time at the end to give her more medical evidence. I was ignored and told we could deal with this latter. The so called health professional fired one leading question after another at me. When she did not get the response she wanted she would repeat the question again and I would try and repeat my initial answer. The question would be asked again until she got a response that she wanted.

    After about 15 minutes my wife interjected and said, "My husband has answered your question so stop asking him it again and again". This comment was ignored as the health professional persisted with her war of attrition style tactics that were grinding me down. After half an hour I asked for a break to take some painkillers and ribose, that help with energy production. I was now so very fatigued that I had my head in my hands resting on the desk of the health professional.

    The questions continued unabated. She didn't stop to ask if I was in pain or feeling unwell. My wife began to answer questions for me, as I was struggling to comprehend the questions due to overwhelming fatigue. By the end of the assessment I felt as if I'd been in a fight and just had one desire: to go home to bed and take more painkillers. The health professional watched me shuffle out of the building and into the taxi waiting outside.


    A month later I received the dreaded brown envelope informing me that I was not entitled to any element of PIP, and with aids I could cook a 3 course meal, walk up Ben Nevis and run my own business. You get the picture. With the help of the local CAB and my family I prepared my Mandatory Reconsideration letter that included further medical evidence and sent it off expecting to be turned down. A month later another brown envelope arrived turning down my reconsideration.

    PIke appealed the DWP's decision - based on inaccurate medical records - to provide support
    Another trip to CAB and we filled in the form for an appeal. At the same time I wrote a letter of complaint that explained in detail the lies and distortions in the health professionals' report. It also pointed out the omissions of things that I had told the health professional.

    Christmas came and went as I waited for the DWP to respond to my appeal and letter of complaint. It got to late January and I could wait no longer. I rang up DWP, only to be told they had no record of my letter of complaint. I was told to send it again. Meanwhile, my employer dismissed me on the grounds of ill-health to round off a miserable month.

    In mid February, I received 2 short phone calls from different Atos managers who never gave their names, and informed me that my assessment in November was not up to the 'high standards' that Atos expects of its employees. The issues raised in my letter of complaint were never mentioned. I was told that Atos had decided to let me have a second assessment, this time at my home in mid March. I was told by my CAB worker that she had never heard of someone being given a home assessment after a complaint.

    Home Visit

    In the buildup to the home visit I was filled with anxiety, hoping that this time I would be given a fair hearing. On the day of the visit my wife greeted the health professional who came into our living room. He identified himself as a paramedic. He expressed regret for my the 'unfortunate' experience I'd had during my first assessment and asked if I felt anxious about his presence. My wife repeatedly told him that his presence in our house made me rather anxious.

    He set up his laptop while I laid down on the sofa and closed my eyes due to overwhelming fatigue and pain in my back. My wife gave him 2 separate reports by different consultants that explained in great detail the debilitating impact of my illness upon my life. He promised to read the reports later. Then it was back to the same old routine of questions and type, type by the health professional.

    I tried my best to answer the questions with help from my wife. The assessment lasted an hour and a quarter, and then the health professional carried out a physical examination while I was lying down. It lasted about 90 seconds and then he left, much to my relief.

    Despite Pike's appeal, the second examination was as distorted as the first one.
    Two weeks later, I received a copy of the health professional's report which had me in tears within a minute of reading it. I could not believe the lies, distortions and omissions of things I had told him. The consultants' reports that I had given him were not even mentioned. He did however mention that the report from the November assessment, which had been described by 2 Atos managers as unsatisfactory, was part of the evidence that he had considered!

    I felt incredibly upset at not being believed a second time. I thought the first rule of medicine was to do no harm. Obviously, the health professionals working for Atos seemed to have forgotten what the word ethics means. This greatly increased the severity of my anxiety while I struggled with a flaring up of my neurological illness. For several weeks I was too ill to think about my PIP claim and regretted ever making a claim.

    A month after the home assessment, I decided that I could not give in to this institutional discrimination. I spent two weeks going over his report line by line and took it apart. My critique ran to four pages and I sent it off by recorded delivery. Atos sent me the obligatory letter saying they would reply to my complaint within 30 working days.

    Seven weeks after my assessment, I rang up DWP and was told that I would receive a decision in one to two weeks, as they were considering 'new' medical evidence related to my claim.

    A few days later I received two letters from Atos which were replies to my two written complaints. The letter dealing with my first complaint noted that the health professional and her manager had failed to respond to the request from Atos client relations for a response to the points I had raised. It concluded with the statement that the health professional's report was, "both insufficiently detailed and based upon information which dated from 2014 and earlier dates". This was just not true. I provided several up to date reports from different medical professionals concerning the impact of my illness.

    The second letter was a reply to my second complaint and noted that a review of the health professional's report had been carried out by a Client Relations Medical Advisor. It went through in detail the many points that I had raised. It concluded with the statement that there were 'many inaccuracies and omissions' within the report and that further medical evidence "had not been fully considered". To cap it all off was the further admission that the report contained many "inconsistencies and contradictions".

    After such a damning quality review, the Atos client relations officer noted that the conclusions of the review had been sent to DWP for them to consider.


    Three days later I received the DWP letter saying that I had been awarded PIP at the enhanced rate for daily living and mobility for ten years! Two days later my CAB worker rang me up congratulating me and saying that the ten year award in such circumstances was unprecedented.

    It wasn't easy but Pike ultimately prevailed. His recommendation: "Don't give up!"
    I punched the air after receiving my award. I felt that I won a small victory over the institutional discrimination that seems to be the modus operandi of Atos and the DWP.

    The moral of my story is simple: Never give up fighting. No matter how many times you are turned down, no matter what lies are said about you in Atos reports, don't let it get get you down. Turn the dejection, anxiety, stress and anger you may be feeling into action. Put pen to paper and write a letter of complaint about what happened at your assessment and/or what was said in the health professional's report. Make sure it is sent by recorded delivery. You cannot expect to be treated with respect. You cannot expect fair treatment. You can expect to be treated with disdain, to not be believed and to have the medical evidence you provide ignored.

    Tory Britain in 2017 is a society that fails disabled people on so any different levels. The benefits system is on the front lines of the class war against the disabled poor. We must stand together to give disabled people the help, encouragement and support necessary to fight for the benefits that they are entitled to. As a community we need to put pressure upon politicians of all colours to take up this issue of institutional discrimination by the DWP benefits agency and demand they cancel all contracts to private companies that have earned half a billion pounds from carrying out so called "health assessments" upon disabled people.


    Rare Success Story

    Pike's story was covered by the Disability New Service which stated that:

    UK Disability Resource
    Other Disability Resources
    • Health Rising's Disability Resource Center - check out disability resources on Health Rising
    • How To Get On - if you're considering or are trying to get disability or are trying to manage financially or otherwise with these diseases do not, do not, do not miss Lily's (Kit Cat on Health Rising) stunning How To Get On website. Find out how to get on disability, medicaid, get housing help, get help with meds; the list goes on and on. (I'm about to dig into how to get out of my 25 year old student loans.)
    • Disability Story? Do you have a disability story you wish to share with Health Rising? Please let us know. (We're particularly interested in stories which provide tips for people confronting rejections).
    • An ME/CFS/FM Disability Attorney Talks - Steve Krafchick has been helping FM and ME/CFS patients get disability longer than anyone. An interview with Steve is coming up soon.
    Last edited by a moderator: Aug 18, 2017
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  2. Empty

    Empty Well-Known Member

    Thanks for posting your story here. I read it elsewhere and I must say I have been thinking a lot about it. A big dose of gratitude for your persistence and strength.

    When people are so ill it becomes extreme cruelty to put them through these kinds of emotional torture techniques. Asking the same question over and over again, not accurately recording your answers, watching you slump on the desk and not ending the interview. Just what is it they expect to gain from this?

    When a simple mundane object "The Brown Envelope" becomes a government weapon striking terror into the disabled, often using "fraud department" in the address, then you know you are not being properly supported.

    "You cannot expect fair treatment" I think that is accurate and really accepting that allows for a more detached outlook. However untangling their lies and scams in a marathon effort of letter wars, is too much for a lot of sick people.

    When is this going to stop? How can these DWP employees do this to disabled people?

    Fight Back 4 Justice is supposed to be useful in offering advice and support.
    Last edited: Jun 24, 2017
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  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Wow....what a story. With the GOP slamming medicare to give a tax break to the wealthy I'm afraid we may be heading for the same situation here.
    lynda70578 likes this.
  4. Edie

    Edie Active Member

    Hi Pike, I won't repeat all my story as it was pretty well the same as yours. After a good 4 years of this run around, I finally got a lawyer. I then won an out of court settlement. My lawyer would not charge me anything unless we won, and if we did win, I was to give him 30% of the insurance settlement. Well, I figured that my getting 70% was better than nothing!

    Those that work for these insurance companies have no morals and no values and I can't believe that they can go home and live with themselves and their conscience!

    Got to tell you about something really strange that happened. I went to the local health food store one Saturday in January way back then, and they had some kind of open house, where the company reps were handing out information and samples. I was surprised to see a Tarot Card reader there and she was only charging $20, so out of curiosity, I decided to try her out.

    She said to me: "whatever you are doing right now, that the information has to be perfect, it will be settled in your favor in April" Guess What! The insurance co. settled my claim in April! Weird or what!
    Last edited by a moderator: Aug 19, 2017
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  5. Pike

    Pike Member

    Hi Eddie, I am very pleased to hear that you finally won your case. I agree that the insurance companies have no morals at all.
    I was dismissed from my job in January on the grounds of ill-health and am now applying for my occupational pension early on the grounds of ill-health. I just hope I don't have to go down the appeals road as that will be very tiring and demoralising. All the best Pike.
  6. Edie

    Edie Active Member

    I hear you! Only 10% of Insurance Company clients actually fight them to the end. They always say no to the first request for long term disability, so don't get discouraged and don't take it personally as it will drain you of energy. Just make sure you have good letters from all your health professionals. I had a car accident a few years ago that was not my fault and the auto insurance wouldn't even pay for one crutch. Here in Canada, there are various ombudsman that are appointed by government to fight for the 'little guy' against these Insurance Companies and it's free. Would you believe it took 3 years but they finally paid me for the crutch. A few years ago, I saw on TV, a hearing of insurance companies brought before the US congress. One nurse that worked for one of those companies admitted that some of her clients died because of the decisions she had to make in denying their health claims. I'm not sure what happens in the case of Government disability pension, so there may be someone else out there that can help you. Stay strong, I'm rooting for you!
  7. BrianH

    BrianH New Member

    I had a differing issue at my last but one assesment. The guy told outright lies on his report. At the next assessment I took a voice recorder with me, and very obviously placed in on the desk between us.

    Guess what? That assessor behaved a whole lot better.
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  8. lynda70578

    lynda70578 New Member

    Hi Pike,

    Congratulations on getting a very well deserved result. I went through exactly the same 'trial' and was awarded higher rate mobility and middle rate care for 5 years, this was after having to go to a tribunal which really freaked me out !

    The treatment of the sick and disabled in our country is a national disgrace . I was first seen by a former A and E nurse who was in his mid twenties, extremely arrogant and asked questions that had no relevance to my main condition of Chronic Fatigue. My tribunal was a different story and I was treated with the utmost kindness and understanding by the judge and his panel who were knowledgeable about the subject. Being believed was a huge relief.

    I wanted to give up, like you the pressure and worry was unbearable but it was worth it in the end.

    It seems that Atos staff have a staring point of total disbelief and are not set up to give you a fair hearing. The evidence of doctors and specialists is ignored and carries no weight !

    I could go on, but I won't.

    I'm really pleased you persevered and let's hope that you never have to go through it again.
    Rowan, Cort and Empty like this.
  9. sharonklb

    sharonklb Active Member

    Hi Pike

    My story was very much the same...PIP standard rate initially for 1 year, after going to Tribunal Court 1st time (2008..remission for a year...then applied for PIP 2015)...then they actually awarded enhanced mobility and full rate for 3 years on the last assesment, due to 2 things...i was a basket case and the girl who did the assessment had a friend who had M.E!

    Then 2 months later, ESA assessments (claiming they did not recognise the PIP assessments)...which immediately placed me into a work group...entailed me being removed from my local job centre to Capitas around 30 miles journey and constant harrasment and threats of sanctioning if i didnt turn up...i refused point blank...there was no parking...and i would have had to walk for 15 minutes before i actually entered ther building.

    I have had all the same excuses...no record of sending anything...all sent recorded delivery. We can't find files...sorry they have been lost, send them again...we have no record of the paperwork given at the assessment, which btw, was a joke...they left me in a waiting room for nearly 2 hours on a hard chair...painkillers wearing off and then it took 90 minutes and she did not record anything said....claimed i behaved normally when i was in floods of tears and in pain and was also using a back support...it was witnessed and if i would give one bit of advice, i would say always take a witness and record everything in detail via notes if they tell you you can't voice record!

    This obviously went into another round of Tribunal papers...and like yourself EVERYTHING was inspected and words failed me at the incompetance and lies....even telling the court that they could not find the initial forms sent...when i had received them via a FOI application.

    I was unable to attend court, but my friend turned up and the judge actually came out of the office to speak to him and said that he could not see why i was being brought through the system, immediately told him he was throwing the case out in favour of 3 years in support group...i have multiple problems ...and sent him away!

    By the end of this i have felt like they try and strip you of all dignity and self respect and dread the envelopes coming through the door for the next drama.

    I think its important to share these experiences and i agree, benefits and work site was invaluable for getting constructive advice.

    Wishing you best wishes with your ongoing health and any case against your terrible employers...shame on them!

    Sharon x
    Last edited by a moderator: Aug 19, 2017
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  10. O'brian

    O'brian New Member

    Hi Pike

    Unfortuantely I also suffer dreadfully with ME and have done for many years. I'm currently on middle care with the old disablemant benefit waiting for the dreaded PIP application to arrive, If it's at all possible could you maybe post your letter on this forum as I especially would be very happy to veiw it and your answers in preparation to my PIP application. Many thanks for your post, most helpful.
  11. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Great idea! Should be the first thing people do when dealing with these guys.
  12. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Expect a battle but I'm confident that you will prevail.

    Even though it was as rough as hell the silver lining is that your story is an inspiration to everyone seeking help to not give in. Good luck!
  13. diane

    diane Member

    In the light of all of these comments, I consider myself fortunate. I went through the system here in the UK before things got too tough.

    I approached our Local Authority Occupational Health in 2003 when I first needed a break from teaching. They did not give me any actual help or advice, which was the purpose of my visit, but immediately told me I would not get ill-health retirement with ME. (Later I discovered that my headteacher had phoned them to see if he could get rid of me because of ill health, so they must have assumed that was why I was there.) Later they sent me a letter to say I would not be eligible because I had not completed the offered course of CBT. (The nurse practitioner and I had both considered it a bit of a waste of time as I was already doing everything she would recommend. Also, going to the sessions was adding tiredness and stress to my life.) I therefore returned to CBT and this time I saw a clinical psychologist, and was given 4 months off work in order to complete the CBT. She obviously thought I should not be returning to work but I did so for 2 terms as the old headteacher had left and I wanted to be sure my symptoms had not been connected with his bullying. In early 2005 I gave up. Once again, Occupational Health said I had no chance of ill-health retirement. I asked for a report from the Clinical Psychologist and shortly thereafter received a phone call from Occupational Health saying they had never before seen such a strongly-worded recommendation and they were sure it would go through. It did. (The psychologist was also excellent at changing the attitude of my GP and convincing her that I needed to give up work.)

    In addition to this I was eligible for a small amount of pension from the government. I had a medical review of this after about a year but the woman concerned took notice of everything I said. Even though I could pass all the physical tests (bend over, stretch up, etc.) she listened to what I told her about the psychologist's report, including the important information that I could return to work tomorrow but within 2 weeks I would be back at the state I was at when she first saw me.

    It was a relief when I reached the age where I could receive my old-age pension and no longer had to worry about proving I am ill. I have seen too many stories like this one.
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  14. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I wonder if there has been a backlash against ME/CFS patients recently?
  15. Phil Hayward

    Phil Hayward Member

    I agree with all this except "blaming the Tories". This is a problem apart from partisan politics. Public health and "care" systems either have to "ration" resources, or become fiscally unsustainable. If they grant the resources that someone with CFS deserves, someone with hearing loss or sight loss, or someone with cerebral palsy, has to do without. Or if the health system is allocated enough to care properly for all deserving cases, there won't be enough funding to keep public transport running, or school class sizes will have to get larger. Or if the government keeps running deficits to make sure spending pleases everyone, sovereign default is likely and ultimately you will be Venezuela. Pity all the needy, then.

    I am the first to agree that proper care for people with CFS should be a higher priority than a lot of things governments do spend money on. I have FM myself. But I blame straight-out dishonest and incompetent medical research which plays into the hands of the people administering the inevitable rationing of care. Of course the bureaucrats with the unenviable job of doing the rationing, can put at the top of the list of conditions from which to withhold funding, those for which charlatan medical researchers are telling them "it's all in their heads anyway". These "researchers" are the most to blame, not the politicians.

    Crony capitalism is a problem (including drug companies as well as financiers and property magnates) but socialist politicians are just as often suckers for this as Tories, on the grounds of "protecting the public" and so on. And most Tories these days are desperate to virtue-signal at least to match their political opposition, so as to "hold the political centre ground" and maximise votes.
    Last edited: Aug 23, 2017