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MadworldMadworld Member Posts: 20 Connected
I dont know what to do, ive been in recipt of standard daily living for nearly 2 years sinse then my condition has worsened I was told to get a mandatory reconsideration notice so I did and I underwent the appeal prossess. I have had servere ocd sinse i was 7 years old and no not the kind that makes you wash your hands constantly the kind with rituals where I cant walk through a doorway unless I do it repeatedly until it feels right this is the same with opening and closing the fridge, turning on the taps, windows, light switches etc.. This took me a long time to type because i have to write retyping certain words till it felt right. I also have the same problem with opening lids, closing jars, turning on buttons anything with buttons i struggle with and always have and its always made life difficult well years ago i stopped leaving the house, someone had seen me walking over and over the drain pipe until it felt right and had started laughing at me with their friends calling me a freak and I had a panic attack and I started to get worse from then on... now its been 3 years and i havnt left the house at all I dont even have the curtains open incase someone sees me, I dont leave at all and i dont have friends over. I have an infected wisdom tooth from lack of medical attention and an infected ingrown toenail I pysically cant go out the last time I had a medical problem they sent a doctor here because I would not go and sadly surgeries of any kind cant be done at your home. I need reasurance that the ovan is off and the door is locked because i am afraid someone will break in or gas us out and i cant take my own word for it I dont trust im seeing what im seeing I need a second opinion like sometimes i think my cat is in the washing machiene and i panic trying to turn it off because im that convinced hes in there. Im serverly depressed Im 26 and I dont have a life or friends or social media account because i feel like such a freak most days. Well I just want to understand how someone as ill as I am whos been ill for so long and has doctors records amd statements to back up what im saying got kicked off standard and rewarded nothing?? Capita came for a home visit as I refused to go there and had a doctors letter saying im agraphobic and havnt left the house in years. The assessor asked me a few questions I told him i cannot use the ovan without assistance cuz i need someone to tell me its off or il keep checking it he wrote I cant use it but i can use a microwave... I never said that, I would of stated I couldnt use the microwave because it has buttons on it. He didnt write down half of my answers he just wrote his down he didnt mention anything about my trouble with turning the taps on or pressimy buttons or any of that, He also wrote i can plan and take journeys with no problems.. im so confussed did he get my report mixed with someone elses or is he just a liar. I dont know what to do how is it possible that im far worse now and they decide im not intitled when I was intitled before I got worse. This injustice must be happening to others out there. I strongly suggest people start recording these assessments so they have evidence to back up what really happened, I wish i had.


  • rash72rash72 Member Posts: 3 Listener
    I'm very sorry to hear that. I've had exactly the same problem where the assessor barely spoke. As I suffer with severe depression anxiety disorder and panic attacks, plus persistent migraines and physical breakdown too. I was very anxious at the time so waffled on. However when I was declined and got some of the reasoning with that. It was all lies, so I've reported her. My Mandatory reconsideration has be rejected so I'm also going to have to appeal . 
    They don't realise how much this affects people and actually they don't care. Which is such a sad state of affairs in our "United"  Kingdom England :-(
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @Madworld and a very warm welcome to the community. I am so very, very sorry to hear of what you are going through and what you have been put through. And you are correct, every resource and community like our own receives reports of assessors either lying or being incompetent.
    I'm not qualified to advise on benefits, but we do have people here who are and who will get back to you as soon as they possibly can.
    I am sorry, too, that you have been subjected to such cruelty by others and that it has made your life even more difficult. Only people with very small minds find other people's difficulties amusing, but unfortunately the world seems sometimes  to be full of them.
    You won't find any of them here. Here we are friends who care about each other, and nobody is going to laugh at you or try to hurt you in any way at all. This is an online experience you can feel safe with, and I hope you discover the truth of that fairly soon. We ARE here for you :smile:
    I'm going to tag in a couple of people who I hope may be able to help you.
    Tagging @RebeccaMHadvisor and @BenefitsTrainingCo
    Stay in touch, @Madworld, and have a look around the site. Don't hesitate to get back to us if there is anything you would like to ask us or to tell us.
    Very warmest best wishes to you,
    Richard @JennysDad
  • MadworldMadworld Member Posts: 20 Connected
    Thankyou @rash72 and @JennysDad for the quick response it means alot to me, expecially knowing there are others here who really get it, im happy im not alone but its upsetting to know this is so common, I cant imagine how many people have been stripped of their rights because of assessors who dont do their job. I understand there are people out there who want to milk the govenment for all they can but most people applying are genuinely disabled and need help, its not fair they are treat like this. I hope more is done about this surely this isnt right. I really think recording the assessment would prevent this from happening to people the future, its hard to lie about something when theres video footage proving otherwise.
  • RebeccaMHadvisorRebeccaMHadvisor Member Posts: 99 Courageous
    Hi @Madworld

    Welcome to the community. I can hear that things have been very difficult for you for some time and things are been compounded by the DWP processes. I am afraid I am not a PIP expert so can't really give that much advice on the process but I do talk to a lot of people who have a mental health condition and don't get the support and entitlement that they have had in the past. The assessment process does seem very unfair and unbalanced. 
    It appears that the incident with the drain pipe has really stuck with you and impacted on and the way you view yourself. 
    The community here is a safe environment and people here are very supportive. Engaging here can be a really big step to getting help and support for your condition.

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello again, @Madworld, and good to hear from you,
    There has been a bit of a stink raised in Parliament about the assessment process and I understand they are looking at changes including the recording of assessments. One can only hope.
    I am concerned about your lack of getting out and about and the stress and damage - your untreated ingrowing toenail and your tooth -  that your OCD is causing you. 
    Have you got any kind of medical or other support going on at all?
    Warmest best wishes to you,
  • MadworldMadworld Member Posts: 20 Connected
    @RebeccaMHadvisor thankyou for your support and kind words I appreciate it. I'm going to appeal the decision again with all the records i need and il request to record any further assessments im sure this is wrong and can be fixed somehow. I'll let everyone know if it goes well and hopefully people will start to talk about this more and do something before more people get their rights taken away. Thankyou again.
  • MadworldMadworld Member Posts: 20 Connected
    @JennysDad Thanks for the reply, yes I have heard many stories about whats going on in parliment right now and they're horrible I too hope recording becomes mandatory. Thankyou for your concerns on my health, I constantly use warm salt water and painkillers to stop them from getting worse, I have a psychiatrist who calls me from time to time we are arranging to see if he can make home visits he plans to get me on the list for cognetive theropy but they wont do home visits and I am on medication I have been for 2 years now they send a repeat prescription to the local chemist and my mother picks it up and gives me them when I need them. Im on sertreline for the ocd and quetiapine for sleeping, I dont kbow how my agraphobia got this bad but I cant go outside I cant even go in the back garden its just gotten worse over the years it started not being able to get on busses then after the negative experience It became leaving all together. I wish it would just go away so i could be normal and have a normal life like people my age but Ive been isolated for so long I feel like im gonna passout when someone even knocks on my door its the worst feeling in the world like youre whole worlds come crashing down and you dont no why or how to fix it, almost being mad at god or who evers in the sky thinking I must have been a horrible person in my past life or something to deserve this way of life, it sucks not being able to leave but its even harder when every object in the house is against you. Thankyou again for your reply
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello again @Madworld and thank you for getting back to me. I am relieved to hear you are getting some support, though it's clearly not enough. Political austerity does not make life any easier for us, does it?

    Will words, simply chatting, be any help to you?

    32 years ago my then wife gave birth to a daughter and, for a matter of hours, I was the happiest man alive. Within hours my daughter was showing symptoms that nobody recognized and in a few days Jenny's system crashed altogether. Passing within inches of her death we began to discover a whole range of disabilities which no-one had imagined and which would impact on her and us for the whole of her life. 

    That life was destined to be a short one - though we did not know it - and represented four and a half of the toughest, most demanding years I have lived.
    Much of our lives was indescribably awful.

    During that time my mother, what I'd call a 'card carrying Christian' began to ask some of the questions you have asked. What had she or we done to deserve this? Whose fault was it - because somebody has to be to 'blame' for all such things?

    A 'card carrying' atheist, such thoughts occurred to me in the darkest moments, but I realized that they were nonsense. Not only in terms of what had happened to us, but also in terms of what happened to other people that we knew, mostly other parents of disabled children. For the most part they - and we - were ordinary, decent, compassionate folk, and our experiences made us if anything braver and more compassionate. None of what I saw happening to them, and none of what I understand to be happening to you, can be apportioned to 'blame'. You have not done anything to deserve this, nor had we, and nor had anyone we knew.

    Jenny's life and death were the result of Nature, of possible infections, possible malfunctions in her mother's reproductive system, possibly in mine. But it is Nature, not any god, which determines this.

    If what has happened to you and what happened to us and our friends demonstrates some Divine, punishing intervention, then so must everything - every accidental stubbing of the toe, every painful wisdom tooth, every summer cold or attack of hay fever, and that is nonsense.

    None of this is your fault, Madworld. You are a victim, a sufferer, and you deserve ease, rest and recovery. Your friends are here to try to help you toward this.

    I hope that makes some sense to you.

    Warmest best wishes,

  • MadworldMadworld Member Posts: 20 Connected
    Thankyou @JennysDad for the wise words, im so sorry about what happened to your daughter thats terrible I cant imagine what its like to lose a child and I admire your strength and look on everything after experiencing something like that. I wish I could be as strong as you, Im just losing the hope because its a constant thing and I cant help being negative not just because whats happening to me but because of all the bad thats happening in the world, all the tens thousands of innocent cats and dogs tourtured every year in the chinese dog eating festival, all of the children sold into slavery world wide, familys dying world wide from starvation when theres obesity and resturants like mcdonalds who throw away billions worth of food every week. And good people like you who have to bury their children when theres people throwing theirs away everyday. Its just not right and i struggle sometimes to see that light when theres so much bad going on and knowing we cant change anything only the big guys get to make the rules and the rules are (make money). Its hard to see the point in all of this, thankyou for your reply and im sorry again about your daughter, if there is a good place to go when we pass im sure shes in it.
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello again @Madworld (wish I could call you something else :smile: )
    And I do entirely understand what you are saying. Sometimes the bad in the world seems so vast that we feel absolutely hopeless, wonder if it is worth going on.
    But then there is a 'good', a light that we can pass from one to another simply by being friends and helping where we can.
    The evil that is done is done increasingly by those with power, aided and abetted by those who won't make any effort to make things change. We have to be the ones to make the effort, however small that effort is.
    There are going to be people here who can benefit from your care and compassion. Why not use it, and bring that little extra light into the darkness?
    Only my thoughts.
    Take care of yourself,
    Richard @JennysDad
  • MadworldMadworld Member Posts: 20 Connected
    @JennysDad I will try to take your advice and talk to others on here who need advice where I can and I do see the light in the world in some places and its beautiful, I just think there could be alot more going around. I'd like to see more people up for changing the world but most are too interested in their facebook feeds and what not. Thankyou for your advice and your kind words its always nice to know theres other people who want change out there, and you can call me Trish. Thanks again.
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Trish! Yay! Love that name. Always makes me think of 'Patricia' which became a favourite with me many years ago when I was reading Leslie Charteris's 'Saint' books. 'Patricia Holm' was his lasting love interest, so I fell for her too.

    Yes, we have to keep trying for change. And we will.

    Don't ever forget I'm here :)

  • justg72justg72 Member Posts: 173 Pioneering
    Hi Madworld
    I am sorry to hear about your PIP assessment and the outcome its so unfair. The same has happened to me I have gone from my daily care and mobility enhanced rate to scoring 0 on both daily care and mobility. My assessment was not correct at all the assessor has answered questions I was not even asked, in fact by reading my assessment, me and my friend who came with me, both thought we must have been sat in somebody elses assessment because what was written in the report was totally different to what got said. None of my evidence was taken into account as the assessor could not access it due to the computers been down. I have uncontrolled temporal lobe epilepsy which is severe. The assessor had written that I can cook, get a bath, can do all household duties including ironing and much more with no supervision required. The assessor said that I was not in danger at all. Try telling that to my son who is 15 years old and is my major carer. On the Friday which has just gone I had a seizure at the top of his steps and went down the full flight. My son came to my aid and found me still fitting at the bottom of his stairs. He then rang for an ambulance and I went to the hospital. I have a badly swollen and bruised back and had a head injury. I am very lucky that I have not caused anymore damage, this is me who apparently can do everything safely because in the report it states I get 10 minute warnings before I have a seizure NOT!!!!!! Most of my seizures come with no warnings at all. I can fully understand and empathise with you, something needs to be done about this theres so many people saying exactly the same about this and their reports are incorrect will get. I am appealing mine with an MR not that it will get me anywhere I will probably have to take it all the way to a tribunal. Good luck try not to let it get you down I know thats easier said than done.   
  • MadworldMadworld Member Posts: 20 Connected
    @justg72 Thanks for the reply, yes exactly its happening to so many people right now. Im sorry for what you are going through you are another victim they have done this to so many people it must be illegal. Hopefully recording assessments will become mandatory so it doesnt happen again. Tribunals are highly accepted now because more then 66percent of people who have had their pip taken away shouldnt have and there are investigators looking into this, reports of assessors lying and writing false information has become so common now. I hope your appeal is sucsessful and you get your claim back. Get as many reports and doctors statements as you can to back up your claim. keep me updated on how it went :smile: best wishes 
  • MadworldMadworld Member Posts: 20 Connected
    @JennysDad You guessed it, my mum liked the name herself lol trish is a nickname. Thankyou for your support and i'll definetly keep your advice in mind. :smile: thanks again 
  • justg72justg72 Member Posts: 173 Pioneering
    Hi Madworld
    Thankyou for your response I do not know how these assessors can sleep at night the whole system stinks. Once again taking it away from genuine disabled people. I have lost my job, driving licence and all of my independence because of my epilepsy. I would love the assessors to swop lives with us and see whats it like to be in our shoes. Anyway I will fight for my rights. Good luck and thanks for the kind words and support.
  • MadworldMadworld Member Posts: 20 Connected
    @justg72 Damn right.. id like to see that. Thanks for the response, hope it all goes your way :smile: keep us updated. Goodluck 
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