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The Benefits Trap

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  • foxuk
    foxuk Community member Posts: 103 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
  • wildlife
    wildlife Community member Posts: 1,293 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. 
  • wildlife
    wildlife Community member Posts: 1,293 Pioneering
    edited June 2022
    [Username removed] 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.  
  • Topkitten
    Topkitten Community member Posts: 1,285 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.
  • wildlife
    wildlife Community member Posts: 1,293 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.. 
  • Andreasuperstar
    Andreasuperstar Community 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.
  • wildlife
    wildlife Community member Posts: 1,293 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..
  • CathScarlett
    CathScarlett Community 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.
  • wildlife
    wildlife Community member Posts: 1,293 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.  
  • Jimbo2
    Jimbo2 Community 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. 




  • Justice
    Justice Community member Posts: 197 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_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 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 community@scope.org.uk 
    Scope
    Senior online community officer
  • RAMC74
    RAMC74 Community 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. 


  • Tugglz
    Tugglz Community 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.

  • debbijane
    debbijane Community member Posts: 9 Courageous
    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!
  • Dilyton
    Dilyton Community 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!!
  • soupdragon
    soupdragon Community 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
  • walsallchick
    walsallchick Community 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
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    Thank you for the link
    Be all you can be, make  every day count. Namaste
  • vicky2
    vicky2 Community 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

Brightness