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The Benefits Trap

MischeefmanagedMischeefmanaged Member Posts: 5 Connected
edited July 2017 in Guest blogs

My name is Charlotte, I'm 34 and I live in Carmarthenshire, West Wales. I was a Primary School Teacher before disability made it impossible for me to work, and I would love to be able to go back to teaching one day. I have Fibromyalgia, a spinal injury, osteo-arthritis, severe anxiety and PTSD as well as some other health complaints, which have made life extremely difficult for both me and my family.

I had to leave work in March 2017. I absolutely loved my job – teaching was what I was born to do and I went back to University as a mature student to achieve my goals, which I did despite my disabilities. However, towards the end of 2016, my conditions worsened and I had to go on long term sick leave. This has had a devastating effect on my mental health, as I have gone from being an award winning career woman, to living in one room of my house and spending most of my time alone.

I have now left work permanently, which has thrown me into a very poor financial situation. I have debt, no savings, and although my husband works full time, his wages aren't enough to cover our outgoings. I applied for Employment Support Allowance, which was turned down because I have a husband that works full time. It was the same story for Working Tax Credits – my husband earns very slightly over the threshold, when in reality, his wages are just over £300 a week. This doesn't cover rent, bills, debts, fuel, utilities, food, clothes and other necessities. Housing Benefit have offered us £1 a week off our rent, which is laughable. We are right in the middle of the “Benefit Trap”, where we are not entitled to anything more than a pound a week because one of us works full time.

Young woman - Charlotte - looking at camera

My husband was advised to either stop working entirely, or work less than 16 hours a week. The government seem to be actively encouraging people to work less, in order to receive more money! It just doesn't make sense. He doesn't want to give up his job because he loves it there, and it is a form of respite as when he is at home, he is a full time carer and parent. He does everything in the house including laundry, cooking, shopping, cleaning, pet care and looking after our son. He also looks after me. He washes me, dresses me and feeds me, even sacrificing his own lunch breaks to bring me food, at the detriment of his health. He has lost a large amount of weight, is now severely underweight and has had to seek medical attention himself because he has no time to eat.

Occupational Health have offered to raise our toilet and convert our bathroom to a wet room which is much appreciated. I'll be able to shower more independently. They cannot help with anything else, such as personal care or food. They have provided me with a self-propelled wheelchair, which I cannot propel due to pain in my arms and neck. Even if I could use the chair, it does not fit through the doors in my house and I have stairs leading to downstairs and outside. I cannot access my living room, kitchen or garden at all. I need an electric wheelchair but the NHS cannot provide this to me due to funding cuts and I was told to buy my own, which obviously I am not in a position to do. Therefore, I am facing remaining in my bedroom alone on a long term basis.

I have recently applied for Personal Independence Payments. This process has been harrowing. On application, I felt positive. I knew that as a chronically ill, mentally ill and physically disabled person, I was entitled to maximum PIP benefits. I undertook a mock assessment with the Citizens Advice Bureau and scored 74 points, entitling me to higher benefits for both mobility and independence. When it came to my real assessment, I had to cancel the first one, due to severe panic attacks. The second assessment went ahead in my home and I spent most of it shaking, sobbing and telling my husband that I was sure I was going to die. I physically could not move from my bed as I was in too much pain and the assessor was reassuring, discouraged me from moving and told me that as I was clearly severely distressed, he could come back at another time, which we declined as I just wanted it over.

Charlotte with her son and husband signing a marriage register

When I received my PIP report, I was floored. We all were. I had scored 0 points for the first section and 4 points for the second, denying me any benefits at all. The report itself was paragraph after paragraph of blatant lies. The assessor had said that because he didn't see me move during the assessment, he deemed me able to walk, get into the bath, go downstairs and complete all aspects of self-care, despite the fact that he told me not to move because I was visibly in too much pain. He had ignored medical reports, letters from the mental health team and the fact that I was being given a wet room and a wheelchair by Occupational Therapy. He deemed me fit to work. He had sat in my bedroom, witnessing me screaming and crying in terror and then wrote that I was “calm and relaxed throughout the assessment”. It was absolutely shocking and the stress and anger caused me to have a flare up of my illness.

I had to put together a Mandatory Reconsideration, which addressed every untruth in the report that were so extensive that I wrote 22 pages, not including supporting evidence from my GP and mental health team. I have just been informed that this has also been declined. I have to now appeal again and take the case to a tribunal, meaning that I must attend court to fight for what I am entitled to. This will be extremely difficult for me, not just physically but mentally – it was hard enough having the initial assessment in my home. I haven't left my house for months and I do not know how I will be able to go to court. Meanwhile, we are spiralling further into debt. With just my husband's wages coming in, we are having to start looking into food banks and may face homelessness.

I find it very hard to accept my illness, as I do not want to be stuck in bed, living a lonely life of pain and boredom. I find it even harder to accept that the government is now making it as hard as possible for me to just exist. Surely this isn't how we should be treating our sick people?


Tell me about your experience of benefits as a disabled person. 

Replies

  • NSAblueNSAblue Member Posts: 6 Listener
    Done most of that regarding the PIP. I got zero points even though I see a shrink, have counseling, Cognitive Behaviour Therapy, and had panic attacks for 9 months. This to go with two serious head injuries and depression.
    So I too am stuck on Benefits, but not enough to live on!
    ESA. Housing Benefit.
    I had lifetime DLA prior the PIP rubbish.
    So basically life's pretty rubbish.

    But it is sunny out! lol
  • Martin64Martin64 Member Posts: 3 Listener
    This sounds far to familiar.  I myself had to give up work through disability and I got both esa and pip. I have now lost my pip leaving me only was to live on so life is a struggle and frequently can't afford to eat but at least I have lost some weight. 
    The latest set back was to receive a fine for claiming free prescriptions on esa because my esa is contribution based. I didn't know there was more than one type of esa so I didn't know I had done anything wrong.  The fine was  £100 plus the cost of the prescription. 
    The trouble is that they work 3 months behind so I am expecting another 2 fines before this is up to date. 
    Not sure how I can pay the outstanding amount so I will see how it goes. 
    When I phoned up to query this I was spoken to like I had done it on purpose and I was told that I had a good run and surely I knew I would be caught at some point. 
    I am devastated and this has had a very bad affect on me so my advice is check what type of esa you are on if you claim free prescriptions. 
  • WebsterWebster Member Posts: 1 Listener
    Can your husband get carers allowance. I get it for my husband and yes its only £62.70 a week but it does help a .lot.
  • wildlifewildlife Member Posts: 1,314 Pioneering
    edited July 2017
    @Mischeefmanaged I too can identify with your story. However I managed to get my award changed AFTER the MR and didn't need to go to Tribunal. From my experience this is possible if you are determined enough. Also if you were a teacher I would guess you write well and are able to talk to people so this is what I did. As soon as I received the assessor's report full of lies I complained in writing to ATOS. Having done that I made sure DWP knew I'd done that. My MR was kept the same but there was a sentence on the reasons for the decision that I picked up on and used to my advantage. The decision maker had promised to look at my claim again if the ATOS complaint changed anything. But even without the complaint changing anything as it is still not resolved I booked a call back from a decision maker or case manager as they're now called. I had prepared questions before hand that I wanted answers for. After the phone call I had achieved a promise from them to look at my claim again. They knew I also suffer from PTSD and during the call I told them I couldn't cope with going to tribunal. I suggest you do the same. They asked me to send in more evidence and I wrote what was my 2nd Mandatory Reconsideration letter referring to medical evidence they had not used. Each time they review a claim, and they can do this anytime before your appeal, they will send the case back to the assessment company for a new so called health professional to look at. This they did for me and I had a phone call to offer me an award I was happy to accept. Why should you make yourself suffer by having to wait for months and then going through the trauma of an Appeal. Don't let them do that to you. In saying that you should still apply for the appeal so as not to run out of time and to keep all your options open. Good Luck and I hope I have helped..     
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,376 Disability Gamechanger
    @Mischeefmanaged sorry to hear what you are going through.

    I am getting ready to go to work but wanted to point out you can appeal the decision and ask for a paper decision. This way you do not have to appear, the tribunal will assess your appeal based on the evidence presented in writing.

    If this is an option you would like to consider someone among the benefit advisers may be able to offer more advice.

    @BenefitsTrainingCo any advice?

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • dogfatherdogfather Member Posts: 61 Connected
    hi sorry to hear about your issue, I hope you make progress with your PIP review / tribunal. If you have paid your stamp why can't you claim contribution based ESA. I managed to get contribution based ESA once my SSP ran out. If you are placed in the support group ( after interview ) you get this until they decide to review your case. I think it would be worthwhile checking if you can claim this benefit. 
  • JusticeJustice Member Posts: 206 Pioneering
    @Mischeefmanaged . I too am very sorry to hear all that you, and your Husband are having to go through. @Wildlife is right. If you can muster up the energy then DO complain, DO call them, take names, log times of calls, and of course keep a copy of everything you send to them, and send anything by recorded delivery. I was thinking along the same lines regarding contribution based ESA, and so I agree with @dogfather too. I guess it depends on how much National Insurance you have paid to date. My Husband was in receipt of the contribution based one, this is not means tested at all. I would double check too about your Husband, and the carers allowance. It is true that he will get no money from it, but may get a letter saying that he would be eligible if he earned less ( I forget what they call it), but it does mean that you get more help with other benefits such as rent and council tax, for example. I am not a benefits adviser, just speaking from our own experience, so do get some professional help to point you in the right direction. I am in the throws of writing a book about the plight of the Disabled in the UK, with particular reference to the minefield known as the Benefits System.I am including in the book real stories, many of my new found Friends on Scope have contributed. I do NOT use real names of course, and often change location, so no worry there. I would love to include your story if you are willing? I did ask Scope Office if it was ok to mention this here before I joined. I am not sure how to send you a private message so if you are interested please mail me, and I will tell you more. The email is one I only use for the Book [email protected] I have also just started closed Disability and Benefits group on face Book. it isn't a place to give advice ( That is what Scope is for), I hope for it to become more of a virtual drop in centre where we can share problems, support each other, and of course share any fun things too. If you want to join us there drop me a mail and I will invite you. It doesn't matter if you decide not to share your story you are still very welcome in the group, that goes for anyone else reading this too. I look forward to hearing from you if you are interested. Take Care, don't let the B( you know what) grind you down :-)
  • wildlifewildlife Member Posts: 1,314 Pioneering
    edited July 2017
    @Justice It's called "Underlying Entitlement to Carer's Allowance". MOH has it and we get more Housing Benefit and pay less Council Tax because of it..
  • JusticeJustice Member Posts: 206 Pioneering
    edited July 2017
    Wildlife Thanks for that. I should have remembered as I have just received the letter which I needed to take with me for our Housing benefit, and Council Tax Support application. It is a very logical name but seems to be one that refuses to set in my brain :-)

  • MischeefmanagedMischeefmanaged Member Posts: 5 Connected
    Thank you for all your replies! Unfortunately I can't get ESA because I took time out of employment to do a post grad teaching degree so they said I now haven't made enough NI contributions, even after teaching for 18 months. Apparently trying to better myself for my family has now had a negative impact on me! 

    My husband can't get carers allowance despite social services assessing him and registering gum as my career because he earns just over £300 a week, which is over the threshold. 

    With regards to Pip, I put in a huge complaint to Capita. A few weeks later I received a letter with am appointment for a Pip assessment. Confused as obviously I've already had one I, I called them and they said that there were some discrepancies with my original assessment and I'd need to do another one. I called the DWP and they told me this never happens and to take it as a "good thing". They then called me back in a bit of a panic and mumbled their way through the call, suggesting that Capita had an "internal audit" and I had been randomly selected for a second assessment. It doesn't sound right at all to me. 

    I had the assessment on Friday. It took over 2 hours this time. It was awful, I had panic attacks and she made me do the exercises despite me crying in pain. She asked questions like who painted my nails and what caused my PTSD and kept pushing and pushing the triggers. I can't believe I had to go through it all again. 

    My first assessment is waiting for a tribunal date and who knows what will happen after this second one. I just know we can't live on £300 a week for much longer as everything is suffering :(
  • wildlifewildlife Member Posts: 1,314 Pioneering
    edited July 2017
    Hi Charlotte, You are not alone in finding the PIP process a traumatic experience. Have you rung DWP for your assessor's report? It isn't sent out automatically you have to request it. That will give you a good idea what your award will be as DWP have no medical knowledge so they use the points suggested by the assessors. Hope that helps..
  • TopkittenTopkitten Member Posts: 1,288 Pioneering
    As far as I can make out the PIP system relies on questions set by people who have no contact with or experience of disabled people and, from what I've heard, little or no experience of mental illness. Consequently their ideas are based the simple philosophy of missing limbs and accident damage. The whole thing falls apart when faced with the multitude of invisible illnesses. The whole thing has fallen into a great big hole in the ground so the necessary complete redesign has not been scheduled and probably will never happen.

    I am still on DLA and dread the PIP assessment I will have to go through because outwardly I look perfectly healthy. Because of multiple deregistrations by surgeries that couldn't remotely cope with my problems I now have yet another doctor that doesn't have a clue and all attempts to sort it out have been completely ignored. (A deregistration is when the surgery sends you a letter giving you 7 days from the day it is typed to find a new doctor or have no doctor at all) Earlier this year I had no doctor for 3 months because I couldn't face the disagreements involved in trying to get a new doctor to begin to understand my problems.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Seren27Seren27 Member Posts: 1 Listener
    Hi Ive just read your post on twitter -Im from Ammanford, Carmarthenshire. Have you tried speaking to 'Catch Up' in Llanelli? They were great and helped me win my appeal. xx 
  • RosRos Member Posts: 12 Connected
    Martin64 - My daughter was also fined for improperly claiming free prescriptions. When I looked into it I found she had incorrectly been put onto the contributions-based version of ESA, even though she has been severely disabled from birth and has never paid any National Insurance Contributions.  When I discovered this, I asked them to correct it.  They said that would send me the form to fill in, and apologised that it was about 20 pages long.  It turned out to be 42 pages long.  Then they checked and found out that I had in fact sent in this form 18 months earlier but they had decided not to action it.  My reply was action it now then, to save me filling in a new one, and they said they couldn't because they had thrown it away!  At this point I contacted my MP and he got them to switch her to the correct benefit without any more form-filling.  But the crucial point is that during this process, and in the course of numerous phonecalls to try and sort it out, no less than 3 different DWP staff on 3 separate occasions told me it's DWP policy to put people on the contributions-related benefit because it pays a lower sum, and then it's for the disabled person to find that out and challenge it.  So my advice to anyone applying for ESA is demand to be told which version you've been put on, and demand to be put on the correct one.
  • emkins40emkins40 Member Posts: 28 Connected
    Finally I won after being messed around for 2 years at one point being told I had won my appeal to then have it overturned and return to higher tribunal. I wrote weekly to my mp, the right hon David Gauke ( minister for DWP) the head of operations at DWP and the prime minister plus Jeremy Corbyn. I had 2 letters from 10 Downing street, no response from anyone else and my local MP said he would represent me if the issue was not resolved. Within a month they were sick of my letters, my award was reviewed high rate for both and for a 10 year period. The only way to succeed is to not give up. Go straight to the top it's worth the stamps and continued pressure. No matter what! I have not heard of anyone who got pips first time unless they were sadly terminally ill. Keep on fighting as you will win eventually. Love and peace. 
  • Epilepsy_PatientEpilepsy_Patient Member Posts: 6 Connected
    My sympathies to everyone who has contributed to this post especially Mischeef the first person. My experience was similar. I have Epilepsy with mild Absence seizures, about 3 to 12 times a month, for which I take a hold of medication. I taught abroad and thoroughly enjoyed it, yes even with the Epilepsy. I hit a problem when I lost both parents in 2008, the inheritance counts as Savings, and the threshold of 16,000 is laughable with today's Rents (Owning a house for me has gone, a dream I will never realise). Tried for ESA, PIP but all I get is NI credits. I am 50, single, so I don't have so many commitments, and shy away from relationships, don't want to upset other people. I too have written to my MP but to no avail. I have been out of work for 4 months, I can't get back in. Basically the DWP or DSS, says you have money, you can live off that, Rent is 550 a month. To get a flat I had to strike a deal, sign up and pay 6 months rent up front, so at least I have a roof over my head. So the Government is doing well out of me and so is the Landlord, because from my experience, phone up a letting agent, the first question was "What job are you doing?". Mischeefs story was interesting because I too have thought of going back to Uni, but I am running out of money. OK I think I have said enough. I wish everyone on the site well, and I know there are people worse off than myself. We all have 1 thing in common, victims particularly of these last 2 Governments.
  • dwpeedonmedwpeedonme Member Posts: 6 Listener
    Due to mental health issues that include self harm and neglecting myself, I have more or less been unemployed since leaving school 20 years ago. I was in reciept of DLA for 5 years but the dwp have tried all they can to prevent me from transferring to PIP. I had to return their form to atos by the 1st of January. Because it was Christmas time it actually meant they had given me about a week to complete the form and send evidence. I managed to put something togther and sent it off. I then got a letter stating I needed to travel for 2 hours on a train in order to be assessed by atos. My GP rang them and told them this wasn't possible due to anxiety. The appointment was cancelled but they were soon back on at me. I was told to attend an appointment an hour away. Again I told them I couldn't attend. 6 months after sending them my application the dwp wrote again and said I had failed to attend an appointment and unless I gave good reason for not letting them know I wouldn't be coming, my dla would stop and my pip claim would be disallowed. I told them I had no idea that I had an assessment because I didn't get any letters or telephone calls making one. I said in 20 years I've never ignored the dwp. I've always made them aware I would or wouldn't be attending their assessments etc. Unfortunately my reasons weren't accepted and my last dla payment was yesterday. I've asked for a mandatory reconsideration and sent a leter fom my GP which states I cannot travel please do a home assessment if needs be. NOW I WAIT. I wait for whatever news it is they are going to give me and fear it will be bad news. I can't understand why they are doing this to me. I have an autism assessment soon and find this very difficult to deal with. I've been self harming and my GP is very concerned, but doesn't want me overly involved with mental health services because they may just drug me and mess up my autism assessment . I am not sure how long my GP will keep that mind set though. If I get any worse then maybe they will have no other choice but to send me to a shrink. Its unreal how the dwp can do this to people. I have threatened to send them my blood, and a few years ago I actually did send their forms back covered in blood. Its not a pleasent state to get in, but they just don't listen. There have been plenty of people die due to DWP decisions. A simple search on google using words such as dwp atos benefits cut death should reveal a long list of people that killed themselves shortly after they were declared fit for work. The poor chap Mark Wood sticks in my mind. He died weighing just over 5 stone. The dwp declared him fit for work. There are loads of similar stories of people with dying or taking their own lives due to DWP decisions. I forget his name, but one the guy died iand when found he apparently had 6 tea bags and £6 to his name. Well its very possible that my name will be added to the list of tradgic deaths. And no thats not a threat or anything. It is simply fact. How can someone that is socially isolated, suffering depression and anxiety, as well as possibly being autistic supposed to deal with this nonesense. I can't afford to live without PIP payments. I pay someone out of the DLA to do a lot of the things I wouldn't do. They post letters, make calls, attend meetings etc etc etc. I can't afford to pay for their help anymore. I just have fingers crossed the dwp see some sense and start paying dla or pip again in the near future. I don't think I can face an appeal and a court, however if I do go to court I will go with a noose around my neck and I will show the judge what a nutter I can be. And I know that sounds bad and dodgy, but some publicity for people going through similar *** is needed and thats the sort of thing to grab the judges attention and the attention of  joe public..
  • EhitEhit Member Posts: 18 Connected

    My name is Charlotte, I'm 34 and I live in Carmarthenshire, West Wales. I was a Primary School Teacher before disability made it impossible for me to work, and I would love to be able to go back to teaching one day. I have Fibromyalgia, a spinal injury, osteo-arthritis, severe anxiety and PTSD as well as some other health complaints, which have made life extremely difficult for both me and my family.

    I had to leave work in March 2017. I absolutely loved my job – teaching was what I was born to do and I went back to University as a mature student to achieve my goals, which I did despite my disabilities. However, towards the end of 2016, my conditions worsened and I had to go on long term sick leave. This has had a devastating effect on my mental health, as I have gone from being an award winning career woman, to living in one room of my house and spending most of my time alone.

    I have now left work permanently, which has thrown me into a very poor financial situation. I have debt, no savings, and although my husband works full time, his wages aren't enough to cover our outgoings. I applied for Employment Support Allowance, which was turned down because I have a husband that works full time. It was the same story for Working Tax Credits – my husband earns very slightly over the threshold, when in reality, his wages are just over £300 a week. This doesn't cover rent, bills, debts, fuel, utilities, food, clothes and other necessities. Housing Benefit have offered us £1 a week off our rent, which is laughable. We are right in the middle of the “Benefit Trap”, where we are not entitled to anything more than a pound a week because one of us works full time.

    Young woman - Charlotte - looking at camera

    My husband was advised to either stop working entirely, or work less than 16 hours a week. The government seem to be actively encouraging people to work less, in order to receive more money! It just doesn't make sense. He doesn't want to give up his job because he loves it there, and it is a form of respite as when he is at home, he is a full time carer and parent. He does everything in the house including laundry, cooking, shopping, cleaning, pet care and looking after our son. He also looks after me. He washes me, dresses me and feeds me, even sacrificing his own lunch breaks to bring me food, at the detriment of his health. He has lost a large amount of weight, is now severely underweight and has had to seek medical attention himself because he has no time to eat.

    Occupational Health have offered to raise our toilet and convert our bathroom to a wet room which is much appreciated. I'll be able to shower more independently. They cannot help with anything else, such as personal care or food. They have provided me with a self-propelled wheelchair, which I cannot propel due to pain in my arms and neck. Even if I could use the chair, it does not fit through the doors in my house and I have stairs leading to downstairs and outside. I cannot access my living room, kitchen or garden at all. I need an electric wheelchair but the NHS cannot provide this to me due to funding cuts and I was told to buy my own, which obviously I am not in a position to do. Therefore, I am facing remaining in my bedroom alone on a long term basis.

    I have recently applied for Personal Independence Payments. This process has been harrowing. On application, I felt positive. I knew that as a chronically ill, mentally ill and physically disabled person, I was entitled to maximum PIP benefits. I undertook a mock assessment with the Citizens Advice Bureau and scored 74 points, entitling me to higher benefits for both mobility and independence. When it came to my real assessment, I had to cancel the first one, due to severe panic attacks. The second assessment went ahead in my home and I spent most of it shaking, sobbing and telling my husband that I was sure I was going to die. I physically could not move from my bed as I was in too much pain and the assessor was reassuring, discouraged me from moving and told me that as I was clearly severely distressed, he could come back at another time, which we declined as I just wanted it over.

    Charlotte with her son and husband signing a marriage register

    When I received my PIP report, I was floored. We all were. I had scored 0 points for the first section and 4 points for the second, denying me any benefits at all. The report itself was paragraph after paragraph of blatant lies. The assessor had said that because he didn't see me move during the assessment, he deemed me able to walk, get into the bath, go downstairs and complete all aspects of self-care, despite the fact that he told me not to move because I was visibly in too much pain. He had ignored medical reports, letters from the mental health team and the fact that I was being given a wet room and a wheelchair by Occupational Therapy. He deemed me fit to work. He had sat in my bedroom, witnessing me screaming and crying in terror and then wrote that I was “calm and relaxed throughout the assessment”. It was absolutely shocking and the stress and anger caused me to have a flare up of my illness.

    I had to put together a Mandatory Reconsideration, which addressed every untruth in the report that were so extensive that I wrote 22 pages, not including supporting evidence from my GP and mental health team. I have just been informed that this has also been declined. I have to now appeal again and take the case to a tribunal, meaning that I must attend court to fight for what I am entitled to. This will be extremely difficult for me, not just physically but mentally – it was hard enough having the initial assessment in my home. I haven't left my house for months and I do not know how I will be able to go to court. Meanwhile, we are spiralling further into debt. With just my husband's wages coming in, we are having to start looking into food banks and may face homelessness.

    I find it very hard to accept my illness, as I do not want to be stuck in bed, living a lonely life of pain and boredom. I find it even harder to accept that the government is now making it as hard as possible for me to just exist. Surely this isn't how we should be treating our sick people?


    Tell me about your experience of benefits as a disabled person. 


  • EhitEhit Member Posts: 18 Connected
    I have a similar story. I have severe fibromyalgia and had to give up my job as the Inclusion Manager at a primary school, which I loved!!! I have debts that weren't debts when I was working. I have my PIP assessment on Friday and today I'm stuck in bed, which means by Friday I will be much better. It's a vicious circle. I want to get better (I know there's no cure), better than I am now, but if I do will I lose my PIP? I've applied for access to my pension on the grounds of ill health, but because I 'may get better in the next 17 years' it was refused! I'm in the process of appealing. I'd love to get back in the classroom, but 1 I'd need to find a job, 2 I wouldn't cope in the classroom full time, the sensory overload would knock me out!!! 3 who would want to employers someone who couldn't be an outstanding teacher. I now work as an Associate Lecturer, which means I don't get paid over the summer break - ESA phone call is being made later today. Just remember your debts weren't debts when you were working. You could have afforded to pay them!!
  • foxukfoxuk Member Posts: 108 Pioneering
    The most important thing to have at any assessment is an independent witness.

    Without one it's just one person's word against another. Interested parties like spouses don't count.

    It is time that all the Disability organisations took this on board and worked towards providing a 'Witness Program'.

    It is a sad situation when an obvious answer to many of these cases has been ignored for decades.

    Just the presence of a Witness does work. I had to go to a tribunal to get my DLA reinstated a few years ago and the attitude was very different to the over the phone 'assessment' that led to my being denied any benefits in the first instance.

    My sympathies to all. I'm just experiencing the first stage of transfer from DLA to PIP myself and am pretty wobbly, to say the least.

    Good luck to all,

    Jon
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @foxuk, Yes you're right. My husband was with me and saw and heard everything but I'm being told he is not an independent witness. However the advisors on here say he is. 
  • mikehughescqmikehughescq Member Posts: 7,132 Disability Gamechanger
    edited February 2018
    I was going to ask why not contributory ESA but that's now been answered. However, I would like to highlight that you may have a further complaint about your face to face assessment. DWP assessment guidance for assessors can be found at https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers

    The PIP face to face is meant to be a consultation not a medical. There are very limited circumstances in which functional testing can take place.

    See paragraph 2.3.69 re: whether there should be a functional assessment. If those things have already been detailed in medical reports they are not needed again unless there is some inconsistency. So, a sight-impaired person who is registered and has put in their CVI cannot have their eyes tested. If you put in test results showing the extent of flexion etc. then they cannot repeat that. They almost always do and it's worth complaining about.

  • wildlifewildlife Member Posts: 1,314 Pioneering
    @mikehughescq From my experience I didn't know how to get test results for muscle strength movement. Especially as you don't know till your assessment that this is what they need to know. You would need a medical professional to do the exact movements and strength exercises as in the assessment so the 2 results can be compared. I provided a physio report done within months of my assessment which had a description of my weaknesses and how that resulted in every day problems but this was totally ignored in favour of my assessor's ficticious results. My physio report stated all my muscles and reflexes were weak and stated which were worse but in medical jargon very different from the recorded results in angles from my assessment. Would be interested in your thoughts as I would have given anything to prove the so called HP's results were way out.  
  • TopkittenTopkitten Member Posts: 1,288 Pioneering
    The whole business of ATOS assessments and PIP is pathetic. My last assessment was held at a local office which is actually disability unfriendly. I had to ask for help to get into the building because of a high step. I had to get in and out of the wheelchair and partially collapse it 3 or 4 times just to get along the corridor and had to have someone help me into the room because it was physically impossible to get the wheelchair inside. Then of course the issues were repeated leaving the building. Even after all that they refused to grant me DLA and I had to appeal to both the lower and higher tribunals where I finally got granted lifetime DLA. I have yet to be assessed for PIP but, from what I've heard, that's going to be even more of a nightmare because in the 5 years since all my physical and mental problems have become considerably worse. I doubt I could even go there now, let alone try to cope with all the problems.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @Topkitten When the time comes you can have an assessment at home as I'm sure you know. But then that doesn't highlight your mobility problems. It wouldn't surprise me if assessment centres were making access for wheelchairs difficult intentionally to catch people out. If you had to get out of the chair before you even got in there they'd be watching to see how you dealt with that. The whole process is degrading, it breaks their customer charter big time and day after day they're getting away with it. Refusing benefit causes hardship and deterioration in people's health and well being and fighting the decision requires an amount of strength most people do not possess on top of what they need to cope with their disability.  
    @Mischeefmanaged How are you getting on? Have you progressed your claim at all? Do hope so.. 
  • AndreasuperstarAndreasuperstar Member Posts: 13 Connected
    Oh my goodness this thread sends shivers down my spine.  How can the system exploit vulnerable people in great need?  I'm currently in a very similar position to @Mischeefmanaged  though I have yet to have any face to face PIP assessment yet. To say I am dreading it, is a complete understatement. Surely we can start a campaign to rid the Government of such a torturous and inhumane assessment process.  For any disabled and clearly unwell person to be assessed according to a points system in my opinion, and others, is degrading and quite frankly vulgar and offensive.  Why should people with rafts of medical evidence be treated so badly?  I fail to comprehend it.  I have heard that these companies are paid per each rejection, thus they are incentivised to churn out cruel reports and are clearly lacking morals and compassion. I feel so sad reading everyone's experiences.  I can relate to them and in the meantime, I am petrified for my PIP assessment and for my financial, psychological, physical and emotional well being as a direct result.
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @Andreasuperstar Put it this way I stumbled into PIP without any knowledge of what to expect and therefore got caught out, whereas you now have the opportunity to learn from other people's experience and be ready to recognise all the pit falls. OK you shouldn't have to do that but you will have the chance to be one step ahead. I agree it is time things were changed and I know there are people working to do that. I have posted on my ATOS complaint thread info. straight from the IAS complaints people which shows their attitude towards any one who tries to accuse them of corrupt practice. I am now with ICE the independent complaint's examiner and will continue to do what I can to highlight what is going on..
  • CathScarlettCathScarlett Member Posts: 2 Listener
    I have a very similar story as well.
    I originally got DLA in 2013 at higher mobility and middle rate care; was forced to change to PIP in 2015 after reporting a change in diagnosis (diagnosis was of progressive and untreatable illness!) but got enhanced rate daily living and mobility awarded for three years from April 2015. I was also (and still am) suffering from severe PTSD after being bullied out of my teaching job due to my headteacher not wanting a disabled teacher on his team (despite my good record and Maths degree!)
    In February this year I suddenly got a reassessment form and so did everyone else I know who gets PIP.
    I reported all the cases to my MP who said they could only do something about cases on an individual basis.
    I had my assessment in mid-May and got the judgement right at the end of May. They had kept my enhanced mobility but knocked my daily living down to standard - because I had been observed to grip a crutch in my right hand and was 'well orientated in time, place and person' (translation: I know when, where and who I am) I have special handles on my crutches that mean that I have a flat surface to lean on, can twitch the crutch a couple of inches to support me as I shuffle the couple of metres from my stairlift to my hospital chair BUT that special handle means that it is impossible to grip the crutch. It is safer for me to shuffle that distance that to make two wheelchair transfers. However, they used this to say that I could do all the daily living activities with just some unspecified aid.
    As I had included a lot of recent evidence from my medical team (consultant, occupational therapist and psychologist) that said I couldn't wash, dress or prepare food and needed a considerable amount of help, I was completely taken aback by this and wrote a very lengthy mandatory reconsideration letter and added more letters from my occupational therapist and psychologist to back it up. I also requested the ATOS report.
    I didn't get a copy of the ATOS report and just got the same reply on the mandatory reconsideration as on the previous letter.
    By this time I was in a complete state over it and needed my CPN to help write my appeal application.
    I contacted my MP's secretary and she rang the DWP and demanded the ATOS report. My CPN helped me go through it an we discovered it was full of lies and that they hadn't used any of the evidence I had sent them.
    I made a detailed critique of the report and collated all the paperwork to do with my PIP and bundled it with a DVD containing a video and voice recording of my PIP assessment (it was a home assessment so we set up my GoPro camera (hidden in plain sight) and a digital voice recorder. The first two lies on the ATOS report were debunked in the first two minutes of the recording. In the letter to my MP I stated that I wanted it taking further than just a complaint to ATOS and that I intended to go public with it.
    My Mp's secretary sent all this to either ATOS or the DWP at the beginning of this week.
    This morning (Friday 28th July) I got a brown envelope through the post. It was from the DWP, dated 26th July! In it they said they had reviewed my award in light of my appeal and had changed their mind because of the GP information- my GP had no input into this as I rarely see them - and had raised my daily living to enhanced and so had stopped the appeal process. There is no mention of a complaint and I am still waiting for acknowledgement of the complaint.
    I am still going to go public or I would be letting down all the other disabled people this is happening to. I am also very unhappy about the continuing lies being put forward by ATOS and the DWP. I need to go public to encourage other people to tell their stories and appeal and also to record their assessments if they can. We need to work together to force change in the system to ensure that disabled people are all treated fairly.
  • wildlifewildlife Member Posts: 1,314 Pioneering
    edited August 2017
    @CathScarlett When you say go public, can you say what you are going to do. It is clear your award was changed due to your being able to prove the report contained lies, along with the involvement of your MP. I guess you didn't ask before your assessment to be able to record it. Normally this makes it null and void or if the assessor finds out part way through they stop the interview and insist the tape or DVD is handed over to them. 2 recording are supposed to be done, one to be handed over even if you have permission.  How did you get away with it? I'd love to know. I go to a centre where it would be a lot harder to record the assessment.  
  • Jimbo2Jimbo2 Member Posts: 4 Connected
    edited August 2017
    No one dreams of living in poverty. 
    This post is in response to Charlotte's post of July 26th.

    How people on benefits and/or a low income can reduce their expenditure by a third or more in two months or less and how they can escape the benefits trap for good. 

    My name is James Boughey. I am retired and disabled. Prior to retirement I anticipated that I would retire into poverty. I was wrong. I have a significant advantage because my job was to increase the efficiency and effectiveness of the organisations I worked for. My job was to save money and I applied those same money saving techniques to my own personal circumstances and reduced my expenditure  by 33% on just my top four items of expenditure. That was equivalent to a £5450 a year increase in my salary and that was just the beginning.

    Last year my vehicle insurance came up for renewal. Performance Direct quoted £460.34 for comprehensive insurance. I obtained a quote for £250.18 from More Than insurance using a comparison website. A saving of £210 and the only difference between the two insurers was the cost. Most people waste thousands of pounds a year every year by paying over the odds on almost everything they buy. Cut out the waste and you can easily, quickly and simply save up to a third or more of your annual expenditure for life. 

    The procedure is simple. 
    1. Go to www.gov.uk/benefits-calculators and check to see if you are receiving the correct benefits or are entitled to additional benefits.

    2. Check with CAB, Scope, Social Services, Age UK or an appropriate  organisation that offers independent financial advice to see if you are entitled to additional financial assistance.

    3. Sign up to www.moneysavingexpert.com for up to date financial advice and offers.

    4. List your regular income and expenditure in ascending order of cost. Most expensive first and least expensive last. Do not forget those items you pay cash for. Have a sensible cut off point there is no need to include items that only cost say £15 a month. Now add any irregular items of expenditure. I pay my Water Rates annually so this is an irregular item of expenditure. If I paid this bill monthly it would be a regular item of expenditure. 




  • JusticeJustice Member Posts: 206 Pioneering
    edited August 2017
    @Jimbo2 I looked at the manual you suggested, and as I suspected you wrote it yourself, it is in the region of $22, and your post is blatant advertising and has no place here, I feel
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @Jimbo2 I have removed part of your post as it is advertising.  If you'd like to discuss this further, you can email us on [email protected] 
    Scope
    Senior online community officer
  • RAMC74RAMC74 Member Posts: 2 Listener

    My name is Charlotte, I'm 34 and I live in Carmarthenshire, West Wales. I was a Primary School Teacher before disability made it impossible for me to work, and I would love to be able to go back to teaching one day. I have Fibromyalgia, a spinal injury, osteo-arthritis, severe anxiety and PTSD as well as some other health complaints, which have made life extremely difficult for both me and my family.

    I had to leave work in March 2017. I absolutely loved my job – teaching was what I was born to do and I went back to University as a mature student to achieve my goals, which I did despite my disabilities. However, towards the end of 2016, my conditions worsened and I had to go on long term sick leave. This has had a devastating effect on my mental health, as I have gone from being an award winning career woman, to living in one room of my house and spending most of my time alone.

    I have now left work permanently, which has thrown me into a very poor financial situation. I have debt, no savings, and although my husband works full time, his wages aren't enough to cover our outgoings. I applied for Employment Support Allowance, which was turned down because I have a husband that works full time. It was the same story for Working Tax Credits – my husband earns very slightly over the threshold, when in reality, his wages are just over £300 a week. This doesn't cover rent, bills, debts, fuel, utilities, food, clothes and other necessities. Housing Benefit have offered us £1 a week off our rent, which is laughable. We are right in the middle of the “Benefit Trap”, where we are not entitled to anything more than a pound a week because one of us works full time.

    Young woman - Charlotte - looking at camera

    My husband was advised to either stop working entirely, or work less than 16 hours a week. The government seem to be actively encouraging people to work less, in order to receive more money! It just doesn't make sense. He doesn't want to give up his job because he loves it there, and it is a form of respite as when he is at home, he is a full time carer and parent. He does everything in the house including laundry, cooking, shopping, cleaning, pet care and looking after our son. He also looks after me. He washes me, dresses me and feeds me, even sacrificing his own lunch breaks to bring me food, at the detriment of his health. He has lost a large amount of weight, is now severely underweight and has had to seek medical attention himself because he has no time to eat.

    Occupational Health have offered to raise our toilet and convert our bathroom to a wet room which is much appreciated. I'll be able to shower more independently. They cannot help with anything else, such as personal care or food. They have provided me with a self-propelled wheelchair, which I cannot propel due to pain in my arms and neck. Even if I could use the chair, it does not fit through the doors in my house and I have stairs leading to downstairs and outside. I cannot access my living room, kitchen or garden at all. I need an electric wheelchair but the NHS cannot provide this to me due to funding cuts and I was told to buy my own, which obviously I am not in a position to do. Therefore, I am facing remaining in my bedroom alone on a long term basis.

    I have recently applied for Personal Independence Payments. This process has been harrowing. On application, I felt positive. I knew that as a chronically ill, mentally ill and physically disabled person, I was entitled to maximum PIP benefits. I undertook a mock assessment with the Citizens Advice Bureau and scored 74 points, entitling me to higher benefits for both mobility and independence. When it came to my real assessment, I had to cancel the first one, due to severe panic attacks. The second assessment went ahead in my home and I spent most of it shaking, sobbing and telling my husband that I was sure I was going to die. I physically could not move from my bed as I was in too much pain and the assessor was reassuring, discouraged me from moving and told me that as I was clearly severely distressed, he could come back at another time, which we declined as I just wanted it over.

    Charlotte with her son and husband signing a marriage register

    When I received my PIP report, I was floored. We all were. I had scored 0 points for the first section and 4 points for the second, denying me any benefits at all. The report itself was paragraph after paragraph of blatant lies. The assessor had said that because he didn't see me move during the assessment, he deemed me able to walk, get into the bath, go downstairs and complete all aspects of self-care, despite the fact that he told me not to move because I was visibly in too much pain. He had ignored medical reports, letters from the mental health team and the fact that I was being given a wet room and a wheelchair by Occupational Therapy. He deemed me fit to work. He had sat in my bedroom, witnessing me screaming and crying in terror and then wrote that I was “calm and relaxed throughout the assessment”. It was absolutely shocking and the stress and anger caused me to have a flare up of my illness.

    I had to put together a Mandatory Reconsideration, which addressed every untruth in the report that were so extensive that I wrote 22 pages, not including supporting evidence from my GP and mental health team. I have just been informed that this has also been declined. I have to now appeal again and take the case to a tribunal, meaning that I must attend court to fight for what I am entitled to. This will be extremely difficult for me, not just physically but mentally – it was hard enough having the initial assessment in my home. I haven't left my house for months and I do not know how I will be able to go to court. Meanwhile, we are spiralling further into debt. With just my husband's wages coming in, we are having to start looking into food banks and may face homelessness.

    I find it very hard to accept my illness, as I do not want to be stuck in bed, living a lonely life of pain and boredom. I find it even harder to accept that the government is now making it as hard as possible for me to just exist. Surely this isn't how we should be treating our sick people?


    Tell me about your experience of benefits as a disabled person. 


  • TugglzTugglz Member Posts: 2 Listener
    sad to say yours isnt the only problem with them lying and ignoring issues, my first ever assessment i spent the entire time in tears, i had panic attacks on my way to the appointment which a friend kindly agreed to take me to, and yet to read the report that came out of it all you would have been certain it was a different interview, the friend who came with me said they werent even asking me questions and yet i was getting flustered, i have now been through multiples of these assessments and a tribunal which i won, people dont understand that you would give anything to live a normal life again, but its not that easy, i didnt ask to be born disabled, i still worked and lived as normal a life as anyone else for as long as i could, but of all the things i have experienced with this new system i was amazed when i witnessed someone finish their assessment, come out and leave, then her assessor came out of the office, walked into reception, which i might add is not an entirely sealed room and you can hear all conversations going on from the waiting room, i then listened as they went through all of her medical history and circumstances whilst i was sat waiting for my appointment to come, i was amazed, and shocked, i wouldnt want my circumstances discussed like that after my appointment, the other thing that really stresses me out is the disparity between how people with the same disorders are treated, i have Ehlers Danlos, it is a very wide spectrum disorder and all of us share one thing, unless we are wearing braces or sat in a wheel chair we look as if nothing is wrong, so why does it seem to depend on who we see to how seriously it is taken, some have it dismissed as not a problem at all and others seem to have every thing taken into account and accepted, i struggle to walk i dont walk without pain ever but i have got so fed up with explaining why im struggling i hide it as best as i can which i am so used to now, so apparently i have no issues at all, the fact that on a walk which i am advised to do by physio to strengthen joints i can dislocate tow or three times and sublax multiple times apparently has no bearing as i still try to do it. i was told i must be able to walk fine if i do it.

  • debbijanedebbijane Member Posts: 9 Connected
    So much of this sounds familiar! I have a spinal cord injury, depression because my life changed completely after a fall. I was turned down for DLA, got contribution based ESA for 12 months which then stopped because my husband worked. Despite my case worker at Jobcentre deciding I was unfit for work, I wasn't moved from the wrag. Last year after my condition deteriorated again, I applied for PIP. This is where my story differs. My assessor was brilliant. He was an ex paramedic and very sympathetic. As he was also dyslexic, he was speaking his report out loud to an app on the pc, so I heard everything that went into it. He even suggested other ways I could get help. I was awarded both elements of PIP at the enhanced rate for 5 years. I'm dreading the next one after reading all these horror stories though. Shortly afterwards I was reassessed for ESA and finally put in the support group, but I also fell foul of the confusion about what sort of ESA I was on, and ended up with a fine. I was devastated. I've never claimed benefits before and the letter I got wasn't clear at all. It's a minefield!
  • DilytonDilyton Member Posts: 1 Listener
    I have recently had another PIP review.  I had my second one in April 2016 and had my care component reduced from Higher rate to standard rate with 9 points.  LAst time I scored 16 points.  My Mobility was reduced from Higher rate to standard rate which meant I would be losing my car.  mY HEALTH HAS SLOWLY DETERIORATED SINCE MY FIRST ASSESSMENT.. The assessor was awful and had written in his report that I could walk 50 mtrs.  I was clearly obvious to him that I couldn't even walk 5 FEET.  I asked for a mandatory review and stated all the things that were wrong in the report.  I was given a further 2 points on care but not enough to take it back to the higher rate and had my Mobility put back to higher rate.  In May this year I had notified DWP that my health  had worsened in particular my mental health.  I had to have another Face to Face assessment which I had at the beginning of August.  As yet I still have not had a decision.  The assessor was a nurse with 40 years experience and had brought with her a trainee who was a paramedic.. She explained to the trainee that they really did not need any medical experience as they were not there to discuss the clients medication,  illnesses or condition as that was all in the main report. All they HAD to do was report HOW your condition affects you undertaking the specific tasks.  If you cannot do them, why could you not do them, what happens to you if you did try and what pain, difficulty you had or what psychological impact it would or does have on you to perform such tasks..    I wanted to see exactly what had been written down at the time of the assessment.  She had made a spelling mistake and said to her colleague that it didn't matter at the time as she could change it when she got home.  I didn't bother asking to see anything as every single word could have been changed after they left!!
  • soupdragonsoupdragon Member Posts: 1 Listener
    Hi Charlotte.
    You've had a lot of replies giving some great advice and many sharing similar tales of their experiences of being disabled, the PIP process and how difficult it can be financially when you lose an income.
    I too live in Carmarthenshire (on the border with Pembrokeshire) am disabled with a spinal condition  (2 major ops in 9 months) and also suffer with fibromyalgia and CFS.
    I also had great difficulty getting  PIP, having gone through a very similar experience as you, although I managed to win my appeal.
    I hope you have a good support network of family and friends - if not there are organisations the can help.
    Above all I wish you luck with your tribunal and a positive change in your life and health conditions. X
  • walsallchickwalsallchick Member Posts: 1 Listener
    I completely understand what you are going through, my husband and I run a charity that helps with this kind of thing and representing people in court, with forms and tribunals etc. Nothing surprises us anymore. I hope this is ok to add the link for our site, if you or anyone else needs any advice, please do not hesitate to contact us through our website. The service is 100% free and will not cost a penny for any of our services. My husband is disabled and feels passionately about this and disabled peoples rights. It doesn't matter where you are in the country, we will always do our best to help. www.dspuk.org.uk  x
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Thank you for the link
    Be all you can be, make  every day count. Namaste
  • vicky2vicky2 Member Posts: 1 Listener
    i had assesment and failed. the asser awarded me 7 points but i needed 8. the people who make the discission didnt agree with him and awarded me 0. i am the in the process of appealing it. i have a slight a learning disability and short term memory loss. if this doesn't work then i will have to go to court to try again
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    vicky2
    sorry to hear that. Concentrate on the descriptors that best apply to you and where you can score more points. If you can get more supporting evidence that would be very helpful. Letters from GP and people that know you best ie, familly and friends will all help
    Be all you can be, make  every day count. Namaste
  • kangabearkangabear Member Posts: 1 Listener
    There are too many lies told by assessors. I had a home assessment after I nearly died from septic shock, I also had other ongoing health issues and had been on indefinate DLA enhanced rate care and mobility for several years. Changing to PIP it was coincidental my home assessment was a couple of weeks after discharge from hospital. I was in so much pain, had friends taking it in turns to stay with me as I could barely even walk to toilet, couldn't cook and was in need of so much help. According to the report I was alone at home, I had someone with me, she opened the door to assessor, made her a drink and let her out as well as helping me to be comfy at various time during the visit. I was laying on the sofa as a bed, in nightwear, dressing gown and wrapped in blankets as I was cold all the time. I had not washed and hair was not brushed as I could not bear to be touched. The assessor said I was casually dressed, sitting up, my appearance was good and I am average build. I weigh over 16 stone and am 5' 5. I cried often, I was in great pain, she said I showed no distress at all. She said I refused a physical examination, she never even mentioned one, it was obvious she couldn't do one. She said I was able to move from sitting to standing after a few attempts .. I never moved from laying down in the bed! The list goes on, all lies, and in her opinion I was capable of walking more than 200 metres although she herself said to me she could see how much pain I was in so wouldn't ask me to stand or walk! I went to standard care and NO mobility and although I complained about the lies I am still awaiting a tribunal, the assessment was in January! The latest news is that I may get a date in October.
  • wildlifewildlife Member Posts: 1,314 Pioneering
    @kangabear I have been through the PIP process with lies written about me. I persevered with a complaint to ATOS which took 5 months for them to reject my challenge. However they may be in for a shock as the Data Protection Law clearly states that companies or organizations cannot record incorrect data about people, the exact wording can be found online. I have a case now open with them and have sent a list of all the false information along with a copy of my assessor's report. I even included the incorrect descriptors as these were chosen based on the false statements. I have also continued my complaint now with ICE as I am determined my assessor will not be allowed to get away with behaviour that would not be tolerated if she was working anywhere else.  
  • FlowerpotFlowerpot Member Posts: 3 Listener
    I to had lies said by my pip assessors and DWP who stated as I do not have a lift in my apartment block and if I have to walk down numerous flights of stairs then I can walk ok, huge mistake as I do have a lift which was discussed with the DWP person on the telephone, needless to say I am taking them to a tribunal.
    I do not get how they can say such blatant lies.
  • sueandbensueandben Member Posts: 1 Listener

    My name is Charlotte, I'm 34 and I live in Carmarthenshire, West Wales. I was a Primary School Teacher before disability made it impossible for me to work, and I would love to be able to go back to teaching one day. I have Fibromyalgia, a spinal injury, osteo-arthritis, severe anxiety and PTSD as well as some other health complaints, which have made life extremely difficult for both me and my family.

    I had to leave work in March 2017. I absolutely loved my job – teaching was what I was born to do and I went back to University as a mature student to achieve my goals, which I did despite my disabilities. However, towards the end of 2016, my conditions worsened and I had to go on long term sick leave. This has had a devastating effect on my mental health, as I have gone from being an award winning career woman, to living in one room of my house and spending most of my time alone.

    I have now left work permanently, which has thrown me into a very poor financial situation. I have debt, no savings, and although my husband works full time, his wages aren't enough to cover our outgoings. I applied for Employment Support Allowance, which was turned down because I have a husband that works full time. It was the same story for Working Tax Credits – my husband earns very slightly over the threshold, when in reality, his wages are just over £300 a week. This doesn't cover rent, bills, debts, fuel, utilities, food, clothes and other necessities. Housing Benefit have offered us £1 a week off our rent, which is laughable. We are right in the middle of the “Benefit Trap”, where we are not entitled to anything more than a pound a week because one of us works full time.

    Young woman - Charlotte - looking at camera

    My husband was advised to either stop working entirely, or work less than 16 hours a week. The government seem to be actively encouraging people to work less, in order to receive more money! It just doesn't make sense. He doesn't want to give up his job because he loves it there, and it is a form of respite as when he is at home, he is a full time carer and parent. He does everything in the house including laundry, cooking, shopping, cleaning, pet care and looking after our son. He also looks after me. He washes me, dresses me and feeds me, even sacrificing his own lunch breaks to bring me food, at the detriment of his health. He has lost a large amount of weight, is now severely underweight and has had to seek medical attention himself because he has no time to eat.

    Occupational Health have offered to raise our toilet and convert our bathroom to a wet room which is much appreciated. I'll be able to shower more independently. They cannot help with anything else, such as personal care or food. They have provided me with a self-propelled wheelchair, which I cannot propel due to pain in my arms and neck. Even if I could use the chair, it does not fit through the doors in my house and I have stairs leading to downstairs and outside. I cannot access my living room, kitchen or garden at all. I need an electric wheelchair but the NHS cannot provide this to me due to funding cuts and I was told to buy my own, which obviously I am not in a position to do. Therefore, I am facing remaining in my bedroom alone on a long term basis.

    I have recently applied for Personal Independence Payments. This process has been harrowing. On application, I felt positive. I knew that as a chronically ill, mentally ill and physically disabled person, I was entitled to maximum PIP benefits. I undertook a mock assessment with the Citizens Advice Bureau and scored 74 points, entitling me to higher benefits for both mobility and independence. When it came to my real assessment, I had to cancel the first one, due to severe panic attacks. The second assessment went ahead in my home and I spent most of it shaking, sobbing and telling my husband that I was sure I was going to die. I physically could not move from my bed as I was in too much pain and the assessor was reassuring, discouraged me from moving and told me that as I was clearly severely distressed, he could come back at another time, which we declined as I just wanted it over.

    Charlotte with her son and husband signing a marriage register

    When I received my PIP report, I was floored. We all were. I had scored 0 points for the first section and 4 points for the second, denying me any benefits at all. The report itself was paragraph after paragraph of blatant lies. The assessor had said that because he didn't see me move during the assessment, he deemed me able to walk, get into the bath, go downstairs and complete all aspects of self-care, despite the fact that he told me not to move because I was visibly in too much pain. He had ignored medical reports, letters from the mental health team and the fact that I was being given a wet room and a wheelchair by Occupational Therapy. He deemed me fit to work. He had sat in my bedroom, witnessing me screaming and crying in terror and then wrote that I was “calm and relaxed throughout the assessment”. It was absolutely shocking and the stress and anger caused me to have a flare up of my illness.

    I had to put together a Mandatory Reconsideration, which addressed every untruth in the report that were so extensive that I wrote 22 pages, not including supporting evidence from my GP and mental health team. I have just been informed that this has also been declined. I have to now appeal again and take the case to a tribunal, meaning that I must attend court to fight for what I am entitled to. This will be extremely difficult for me, not just physically but mentally – it was hard enough having the initial assessment in my home. I haven't left my house for months and I do not know how I will be able to go to court. Meanwhile, we are spiralling further into debt. With just my husband's wages coming in, we are having to start looking into food banks and may face homelessness.

    I find it very hard to accept my illness, as I do not want to be stuck in bed, living a lonely life of pain and boredom. I find it even harder to accept that the government is now making it as hard as possible for me to just exist. Surely this isn't how we should be treating our sick people?


    Tell me about your experience of benefits as a disabled person. 

    Hello Mischeefmanaged i can totaly relate to everything you have said. I suffer terrible chronic pain and daily living is just so hard. I to feel like a prisoner in my own home,alot of my time is spent in my bedroom as it is just to hard and severly painful to even move. I to have FIBROMYALGIA, unless someone who has it themself or knows how this dreadful disease effects our every lifes then they have no idea. I also have IBS, CURVED SPINE (SCOLIOSIS, DEGENERITIVE DISC DISEASE, OSTEO.i had to give up my job as a pre school teacher as it was becoming to difficult to do anything. Then my illness progressed which has made it impossible to live a normal life. I have 3 young children and i was told to claim ESA and get sick notes. One day i was at job centre snd an assesor was helping me with forms. She said i do not know why you have to drag yourself here, when she could see i was just in to much pain. She adviced me to make a claim for PIP. She kindly told me what PIP was and what i had to do. She explained why it was changed from DLA to PIP. She said for example if someone had heart attack and then they made a full recovery and was able to slide back into work and stop DLA, but she said people like that still go on claiming the DLA when they are no longer entitled to it. Thats where PIP came in, they could recall anyone at anytime for a medical and can check with GPS & hospital departments to see if that oerson is still allowed the claim.

    I think i was one of the lucky ones with PIP claim. My husband had to quit his job he loved. He had to care for me, he had to shower me, do all my medication ect plus care for the children, cook, housework everything. my hubby, children lives had to change so badly since i became ill. The lady who done my medical knew all about fibromyalgia and wrote in detail how my life was effected by it ontop of all my other medical conditions, i was awarded  enharnced rate. Its awarded on the grounds of reducing the burden financialy to by equipment and things that i could never of ben able to afford myself.
  • BeccamrscBeccamrsc Member Posts: 1 Listener
    Hi i have been disabled since i was 8.. i am now 41.. they give me dla for life untill they changed to pip.. i filled in form ect and was give till november this year. For some reason i was called in for a one to one.. went in my wheel chair with hubby who is also my carer... long story short when i had the letter back.. the person who done the interview had also said a load of lies.. i got out of chair with help to sit on chair right next to it coz o was stiff and needed to move.. she said i could walk approx 200 metre?? Where she got that from i dont know... to many probs to list but main ones is RA and im  also been waoting for total hip rebuild since i was 15... they took my money off me.. i am now waoting a tribunal date when i got to attend xx
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Unfortunately this is all to common a story, those HCP's that  blatantly disregard the obvious truth should be reported to their employers and their professional body. The simple fact that 65% of appeals are successful should be ringing alarm bells somewhere.
    Be all you can be, make  every day count. Namaste
  • Fightback4justiceFightback4justice Member Posts: 3 Connected
    As a pip and ESA lawyer and founder of fightback I can tell you a few things that haven't helped. Firstly I cannot understand why you have not been advised to reapply for ESA as you worked so your stamps would carry over into the next year and with different evidence you should have been afforded a paper based assessment for esa. Your husband's income will not matter for the first 365 days and as long as you get into support group it will then continue. Either way the fact that you would at least get something. As for pip this happens commonly in home assessments and we often advise a centre one is best as you are at your worst. You really should appeal this further to court and even if out of time with DWP have a year and a day to do so in court. The fact you sent 22 pages actually hindered you. DWP are often overwhelmed and we recommend no more than 6 pages of written MR and sticking to the points themselves. Your main reason for failing will be lack of medical evidence so you need to look at where this can be improved for an appeal etc. There is a lot of additional advice I could give and we have lawyers who cover your area. Although we are non profit we still offer free advice via phone daily and can advise in our offices. You really should appeal or reapply. 
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    edited August 2017
    As a pip and ESA lawyer and founder of fightback I can tell you a few things that haven't helped. Firstly I cannot understand why you have not been advised to reapply for ESA as you worked so your stamps would carry over into the next year and with different evidence you should have been afforded a paper based assessment for esa. Your husband's income will not matter for the first 365 days and as long as you get into support group it will then continue. Either way the fact that you would at least get something. As for pip this happens commonly in home assessments and we often advise a centre one is best as you are at your worst. You really should appeal this further to court and even if out of time with DWP have a year and a day to do so in court. The fact you sent 22 pages actually hindered you. DWP are often overwhelmed and we recommend no more than 6 pages of written MR and sticking to the points themselves. Your main reason for failing will be lack of medical evidence so you need to look at where this can be improved for an appeal etc. There is a lot of additional advice I could give and we have lawyers who cover your area. Although we are non profit we still offer free advice via phone daily and can advise in our offices. You really should appeal or reapply. 
    1) Thank you for that. So many people opt for quantity over quality.

    2) can you give your phone number please ?

    Thanks
    Be all you can be, make  every day count. Namaste
  • kitkit Member Posts: 24 Connected
    As a pip and ESA lawyer and founder of fightback I can tell you a few things that haven't helped. Firstly I cannot understand why you have not been advised to reapply for ESA as you worked so your stamps would carry over into the next year and with different evidence you should have been afforded a paper based assessment for esa. Your husband's income will not matter for the first 365 days and as long as you get into support group it will then continue. Either way the fact that you would at least get something. As for pip this happens commonly in home assessments and we often advise a centre one is best as you are at your worst. You really should appeal this further to court and even if out of time with DWP have a year and a day to do so in court. The fact you sent 22 pages actually hindered you. DWP are often overwhelmed and we recommend no more than 6 pages of written MR and sticking to the points themselves. Your main reason for failing will be lack of medical evidence so you need to look at where this can be improved for an appeal etc. There is a lot of additional advice I could give and we have lawyers who cover your area. Although we are non profit we still offer free advice via phone daily and can advise in our offices. You really should appeal or reapply. 
    1) Thank you for that. So many people opt for quantity over quality.

    2) can you give your phone number please ?

    Thanks
    Do you have anyone to help in Newcastle please.
  • mikehughescqmikehughescq Member Posts: 7,132 Disability Gamechanger
    edited November 2017
    The “main reason for failing” comment is speculative and potentially unhelpful without reviewing the claim pack and supporting evidence itself. In fact DWPs own figures show that 52% of those claims which do succeed do so without any accompanying evidence whatsoever. Of the other 48% which have some evidence there’s no data on how much of that evidence is medical and whether or not it is decisive. 

    I would not wish to speculate but medical evidence is only helpful if it fills a gap or confirms something otherwise in dispute. Concentrating on medical evidence is essentially adhering to the medical model of disability too. 

    The main reason for claims failing (apart from the manifest flaws in the assessment and decision making process) are that either people genuinely do not qualify; the specific descriptors are not addressed; there is unevidenced assertion e.g. saying you fall a lot but not detailing recent instances when that occurred (where, how, when, what happened next etc.) and having medical conditions which remain contentious within the medical profession e.g. CFS, IBS and Fibromyalgia.

    I would echo the point re: too much information but in reality though the MR process is poor and the effective target is that 80% of original decisions are maintained so efforts are generally better directed to the appeal stage. 
  • MischeefmanagedMischeefmanaged Member Posts: 5 Connected
    Hi, I just wanted to let everyone know that my MR was turned down. I arranged a tribunal but as a result of my story being in the press, I was offered a second assessment before a tribunal which doesn't happen very often! I went from no points to qualifying for enhanced rate of PIP for both components and my tribunal was cancelled!

    Fighting was very worth it, and contrary to the advice above, the DWP said that my 20+ pages of challenges to their original report was part of the reason mine was re-looked at. 

    A fantastic result! 
  • MischeefmanagedMischeefmanaged Member Posts: 5 Connected
    Also again, I am not entitled to contribution based ESA. This is because I worked for under two years as a teacher and had chosen to go back to university before that to do a degree and a PGCE. 
  • mikehughescqmikehughescq Member Posts: 7,132 Disability Gamechanger
    Hi, I just wanted to let everyone know that my MR was turned down. I arranged a tribunal but as a result of my story being in the press, I was offered a second assessment before a tribunal which doesn't happen very often! I went from no points to qualifying for enhanced rate of PIP for both components and my tribunal was cancelled!

    Fighting was very worth it, and contrary to the advice above, the DWP said that my 20+ pages of challenges to their original report was part of the reason mine was re-looked at. 

    A fantastic result! 
    Excellent result. I would imagine that the use of the media would be the driving force behind an award. Used sparingly it can be time well spent.
  • JusticeJustice Member Posts: 206 Pioneering
    edited December 2017
  • lillybellelillybelle Member Posts: 519 Pioneering
    Please could you explain why a centre assessment is better than a home assessment
    i have a home assessment next week and dreading it
  • mikehughescqmikehughescq Member Posts: 7,132 Disability Gamechanger
    No difference other than location bar the fact you should at least feel more comfortable and in control in your own home.
  • minimouse61minimouse61 Member Posts: 4 Listener
    my son was refused his pip when he had dla for life n made him sit it again for pip n he has disabillty 2 n they lied about every think n we lost on zero points even a lawyer did our forms n say he should win i now apply a mandary but not sure wot else we can add as he not under no docs as he  fear of strangers so there for cant go out and in much pain 2,,i been told my money as i his carer stops on 1st may does any one no if i apply mandary then court if my money will carry on till all sorted as i upset n not no...but i am sure thy need reporting not sure who 2 so i will see my lawyer so he can tell me or sort it out
  • EhitEhit Member Posts: 18 Connected
    Hi @minimouse61
    Your money will stop, if you win you will get it back paid.  :'(:'(

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  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Did you exit work via occupational health route?
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
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  • EhitEhit Member Posts: 18 Connected
    I left my job through ill health and was awarded it in September 2017. They back paid it to November 2017 after appealing the decision. Teachers Pensions (TP) wanted proof that would never work again, but my consultants all said they couldn’t say that because one day someone my discover a cure (and it could be said the same for cancer, not my words).
    E
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