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Tell us your experiences of benefits

Scope_PhilMarsh Member Posts: 12 Courageous

Hi there, Phil here from Scope's Content team. This is an urgent call out for new benefits stories. 

We’d like to speak to people about their negative experiences of PIP, ESA and Universal Credit. This would likely involve a recorded phone chat or face to face chat with one of the Content team. From this, a transcript of the conversation will be sent to you to amend or approve.

Once approved, we might like to use elements of your transcript in Scope content, including social media posts, website articles, reports etc. If a story is really strong, we may ask you if you would be comfortable speaking to press and maybe get you to do a photoshoot.

Subjects which we are interested in hearing about:

  • People scoring 0 in their assessments
  • People taking their cases to appeal
  • Factually incorrect assessments
  • People struggling with bills because of their benefits
  • Experiences of the assessment process as a whole
  • Moving from one benefit to the other

If you would like to find out more information or tell us a bit about your story, get in touch at [email protected]

We understand this is a very sensitive subject and we will treat your story in complete confidence. We never publish anyone's story without their permission and you will always have final say in how it is being used.





  • Bevvy7andover
    Bevvy7andover Member Posts: 38 Connected
    Yes I want to speak my assessment was a joke as was the mandatory reconsideration so now I’m going to appeal just recived a letter saying it will be held in Southampton- this is the second time I’ve suffered this injustice and to make matters worse I’ve had to hand my car back which is my lifeline ....someone should be held responsible for the bad way assessors word their reports even thought I told them I only drive with a carer or relative and a maximum of 4 miles as I have panick attacks and I’ve had 2 strikes while driving, they took my full points away and scored me a big fat 0! When I called to appeal the guy at the other end of the call handler couldn’t understand how I went from full marks to 0 on the driving part i even have 2 named drivers 
    I would love to talk more but my phones about to run out
    Bev ☹️
  • pixie61
    pixie61 Member Posts: 67 Courageous
    Will happily provide you with my story. It’s both a nightmare & stressful. Will go to your suggested website 
  • michfinch
    michfinch Member Posts: 173 Pioneering
    I collapsed and had a Epileptict Fit (I’m Epileptic) with sheer and utter frustration with my “Work Coach” the other day. I dropped the phone, He called 999 and when I came round I did the same thing. Stress is one of my triggers. I have (after 2 years of wrangle and misunderstanding of Epilepsy) been awarded PIP at the lower rate. Most days are new days as I don’t recall much of what’s happened ? a symptom of Epilepsy. To continue with my UC I was FORCED to sign up to say I would look for work. Has this happened to anyone else? This was June 2018. I still send my 28 day fit notes, see my Dr every 2 weeks, medication increased recently and have forwarded a letter from my Psycologist at Momentum Skills (DWP funded Service) endorsing my Dr’s evidence and explaining why I am not fit for work. However, the DWP now want to Sanction me because I’m to ignore the Superior Medical Assessors and go by what the Nurse Practitioners note of me, and my Under Pressure Acceptance of Work Commitments (when I am not of sound mind...). I’m so frustrated. Just realised this should have been sent to [email protected] OK to leave here and not type out again !!!!
  • Dotty123
    Dotty123 Member Posts: 492 Pioneering
    Mine at assessment was lies start to finish I for last 6/7 yrs can’t use hands deformity of fingers yet assessor says I can work ok I have thumb finger but can’t open tin hold pan,pick up anything assessor says I’m able to work at what with no use of hands ,then I asked what safety does job give me I can’t drink out ordinary cup food has to be cut very small usually falls off fork or spoon then asked me sit on bed few attempts I got on nearly fell off end she says oops 
  • vikingqueen
    vikingqueen Member Posts: 777 Pioneering
    i must be one of the lucky ones, my assessors both for pip and esa were brilliant, i suppose they couldn't disagree with my disability because of all the evidence i sent in and the sheer amount of medication i have to take. everything i told them was noted correctly and my awards were reflected in the recommendations they made. 
  • Waylay
    Waylay Member Posts: 971 Pioneering
    So lucky @vikingqueen! One of my PIP assessments was really good. The other 3 were not.
  • pixie61
    pixie61 Member Posts: 67 Courageous
    I was on DLA for 11 years, enhanced on both elements. Transferring to pip, I was reduced to standard on care & nothing for mobility & ive lost my mobility car! I put in a MR my care went to enhances & mobility standard, but I’ve still lost my car! Now waiting for Tribunal. The assessment was a joke. The assessor lied massively in her report. I apparently did loads of joint movements, bending, flexing etc. I wasn’t asked to do anything. I was well kempt & of average build. I’m 5ft 1inch & weigh 7st 8lbs. I feel she was discriminative & I felt as a disabled person worthless!! Something needs to be done to change the system. I have my MP involved, but not holding my breath he will or can help me. My disabled daughter is going through the same thing. It’s awful, she’s a single mum & struggling daily. Now very stressed because of her pip assessment. Yet her ESA, assessment agrees she’s unable to work, due to her health conditions. 
  • michfinch
    michfinch Member Posts: 173 Pioneering
    Yes fortunate @vikingqueen, however, not when you’re unwell, so I send my good wishes for a peaceful day.
    The frustration, for me, when dealing with the DWP in geneneral, is the inconsistency of information and of empathy and understanding  If your call is picked up by a DWP employee who understands a little or a great deal about your conditions, wishes to go that extra mile to assist, great, if not, “computer says No” is the attitude I’ve come across. We’re all human and the Benefit System is there to help, when honestly needed.
  • Dotty123
    Dotty123 Member Posts: 492 Pioneering
    It’s a joke as to me your dr has new you yrs knows you yet you go to assessment total stranger who knows you’ve failed before you go ,how come wouldn’t your dr know you best ,they ask dr for medical report when I went I asked if she got my drs report she said yeah when she was typing she said can you tell me your medication she had left drs report somewhere shouldn’t she of had it with her it’s disgusting how they have done this mr is waste time it’s just to make you go without till tribunal load of bollocks sorry xx
  • vikingqueen
    vikingqueen Member Posts: 777 Pioneering
    thank you michfinch for your comments,and i hope you too have had a good day.. i certainly don't want to have to go for assessments and i would do anything to have my health back but alas this is my life now. i know what you mean about the inconsistency i have had a few run ins with the dwp, i insisted at my assessments that the assessor knew about my condition and i seemed to get the ones who had swotted up on rheumatiod arthritis... i am probably tempting fate and my next assessments will be terrible  :s
  • Shlbly
    Shlbly Member Posts: 128 Pioneering
    edited March 2019

    Debilitating illness

    Shelia has developed fibromyalgia, a long-term condition that causes pain all over the body which is recognised by the NHS to be triggered by a stressful event, including physical or psychological stress. 

    In 2007, she had a breakdown when she was made redundant and everything got on top of her.

    “I’ve been diagnosed with recurrent depressive disorder. I don’t feel like I get the right support with mental health services.

    Shelia says she has 16 different illnesses in total, ranging from arthritis to hepatitis acquired during her drug-taking days.

    Since the breakdown, Sheila, who formerly worked at a drug and alcohol agency and a homeless hostel, says she feels unable to cope with employment. She says life on benefits has proven hard and she’s had to fight to have her disability payments reinstated.

    “I can’t walk far because of the pain,” she said. “I struggle with daily life, with my depression I can’t get out of bed, wash or dress myself or eat properly.”

    She also added that her benefits were stopped for several months after assessors said she didn’t suffer from any mental health problems.

    “I only got my benefits back because my local counsellor got involved and attended my assessment.”

    “I’m completely broken by everything that’s happened,” she said. “The only thing stopping me from ending it all is the thought of what it would do to my girls.”

    Gladly get involved, already been to the newspapers as got nowhere with Atos, DWP and ICE.

    [Edited by moderator.]

  • Adrian_Scope
    Adrian_Scope Posts: 8,595 Scope online community team
    Hi @Shlbly thank you for sharing your story with us and your offer to help with our research. If you would like to find out more information or tell us more about your story, get in touch at [email protected]
    Community Manager

    Tell us how to make the community better for you. Complete our feedback form.
  • Waylay
    Waylay Member Posts: 971 Pioneering
    I'm very happy to help out with the project, too. I'm unemployed (shocker) but was a research scientist in physics and epidemiology, and have written ~10 journal articles ans 2 chapters in a book. :)
  • madquasimodo
    madquasimodo Member Posts: 127 Courageous
    edited April 2019
    My partner had brain surgury, damage to the Vestibular nerve, balance right side 100% failure, low output left side, unable to walk at all un-aided needs walking aid and steering as the balance problems means she veers to the left all the time,

    PIP claim awarded standard rate, no medical exam took place
    MR and paperwork from assessment, spoke to DM and pointed this out as DM wrote "the results of your musculoskeletal examination and assessment show you have no problems" 
    Tribunal awarded lower rate mobility as we sat down, then asked if she would like to try for the enhanced rate,did not go through the PIP form item by item, the doctor started a line of questioning about the operation, then offered enhanced mobility and enhance PIP, mentioning as her balance was so poor she could not prepare food safely or reliably.

    Anyone who has suffered or knows about vestibular balance problems will understand when I say my partner has no ability to "Plan or Follow a route" outside she get confused can never find the car, has panic attacks in shops, suffers severe anxiety when out in case anything happens to me or her daughter as she is totally overwhelmed without support.

  • Vicki988
    Vicki988 Member Posts: 24 Connected
    I hate UC, struggling with money, no money to buy food and still waiting to hear back on PIP as UC have already failed me!
  • wilko
    wilko Member Posts: 2,452 Disability Gamechanger
    Hello fellow complaints and moaners, as a PIP claimant myself and having had two medical exams and a paper based ESA I know that the reports submitted to the DWP for the DM to make their awards are difficult and sometimes, a lot of the times unbelievably to understand how the acessor came to their wrong reporting. Yes we go well dressed, clean washed, shaved looking good  well fed but we are just like all the other people we take pride in our appearance or our partners won’t let us out the house otherwise, as for the comments or answers we give at our acessments then the acessor has no option but record, report in their opinion what you or I answer to the questions asked. And attending with out a clear idea of what to say for your answers let’s and allows the acessor to make subjective answers that you or I agree to then on reading the report object to as we get awarded a low or reduced award. Sometimes we are our own worst enemies in not being  prepared and sending  adequate proof and evidence to support our claims when we apply.
  • Scope_PhilMarsh
    Scope_PhilMarsh Member Posts: 12 Courageous
    Hi everyone,

    Thank you so much for all of your responses to this post. I realise it's not easy to share your experiences of such a sensitive and difficult subject.

    Our Stories team is low on numbers at the moment due to sickness, so we are a little delayed in getting back in touch with you all. We will get in touch with you directly as soon as we can.

    Thank you so much for your patience!

    Many thanks,
  • Shlbly
    Shlbly Member Posts: 128 Pioneering
    Hi oh boy do I have a story. 
    2007 breakdown and this is where it started. Sick pay for 6 months, no bills paid rent etc. Then put on Income support, still in debt everywhere. Health deteriorated so put on ESA and DLA high rate. Assessment for ESA whilst I had been bed bound for 5 days, all stopped lost car etc. Reinstated 3 months later. Started to do a complaint but gave up. Mental health got worse due to this. I was involved with Operation Yewtree 2013, a life time of sexual, mental and physical abuse came out for the first time ever. 
    First PIP assessment 30 minutes long in my house, and he cut and pasted all the way through, money halved as apparently I have no MH disorders, when first diagnosed age 10 plus 4 others. Taken to appeal and lost as had no help doing forms. New assessment August 2018, forms had been done by the Disability Drop in Centre, I was there all day 8 hours as lots to fill in and local councillor at my house, so all changed and back on high rate. Light touch forms done again in December and now on a 10 year till I get contacted again. It has been one hell of a ride, as actually complained about the assessment February 2017 and got nowhere, savings all gone as used to compensate money being cut. Went to the press to tell my story as why are these people allowed to get away with this? 
    I’m very open about what happened to me now as needed to because of what it was doing to my health, still having therapy.
  • fluffycat
    fluffycat Member Posts: 222 Pioneering
    I've emailed across so to remain private 


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