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Disability benefits without the fight

Adrian_Scope Posts: 11,392 Scope online community team
edited March 2022 in PIP, DLA, and AA

Benefits are an essential public service for disabled people. Personal Independence Payments (PIP), Employment Support Allowance (ESA) and Universal Credit (UC) are a lifeline for many.
But disabled people are having to fight for the benefits they need.
Many are having to go through stressful appeals processes, just to get what they are entitled to.
The benefits system should work for disabled people, not against them.
Scope is calling for fairer assessments and to give disabled people the right to request an assessor who understands your condition.
Join our call to the right for an appropriate assessor and tell us about your experiences of PIP assessments below
Community Manager


  • Jean Eveleigh
    Jean Eveleigh Scope Member Posts: 186 Empowering

    This is my report from when I was being assessed for the change over from DLA to PIP - I did it as my MP wanted me to report to them my experience plus I wanted a report incase I needed to appeal


    What happened

    26 Jan 2017

    Received the initial letter dated 21/01/17 telling me my DLA was ending and I needed to apply for PIP.

    Rang the number instructed on the letter around 12:30 and spoke to a lady called Christine (no last name given) to initiate the application process, she asked me a series of questions around finances and the call ended around 1pm.

    She said I should expect the PIP 2 forms to arrive sometime within the next 2 full weeks and I should contact them again to chase the forms if they haven't arrived after 3 full weeks.

    I agreed to receive text message updates, and received the first text message.

    1 Feb 2017

    Received a letter dated 31/01/17 stating more information was needed to progress my claim:-
    Q1 – have I spend 4 weeks or more abroad in the last 3 years?
    Q2 – Do I normally live/reside in the UK?
    This is info I had already provided in the telephone conversation above.

    Although an SAE has been enclosed I will send the question sheet back “signed for on delivery” to ensure I can track it a prove it has been received (as I have experience of the DWP loosing paperwork and claiming it is my fault for not sending it).

    This has cost me £1.74 for postage.

    6 Feb 2017

    Proof of delivery received from Royal Mail tracking service.

    10 Feb 2017

    Received a letter dated 07/02/17 stating more information was needed to progress my claim:-

    Q- Do you claim any foreign benefits?

    Again this is info I had already provided in the telephone conversation on the 26/01/17.

    Although an SAE has been enclosed I will send the question sheet back “signed for on delivery” to ensure I can track it a prove it has been received (as I have experience of the DWP loosing paperwork and claiming it is my fault for not sending it).

    This has cost me £1.74 for postage again.

    Why are they sending out the odd question hear and there that they had already asked and received answers for?

    But not sending out the forms I need?

    14 Feb 2017

    Proof of delivery received from Royal Mail tracking service.

    20 Feb 2017

    Rang at 16:55 to find out why I've still not received forms as the 3 week deadline is up. After 15 mins on hold I spoke to Laura (again no last name given) who said that a 3rd letter was posted out to me on the 17th (so not received yet) and the PIP2 forms had not been sent out yet.

    She did confirm that the 2 previous letters above have been received and is not sure why they keep sending individual questions and not the forms but that my DLA would continue to be paid for however long the process takes until a PIP claim decision is made.

    She also told me to send this new question letter back asap when I receive it as I have been doing, she was apologetic for the delay and the costs I am incurring but there is nothing she can do about it – understandably it's not her fault.

    22 Feb 2017

    8am this morning received a text telling me the PIP2 forms were in the post and I should receive them within 7 days.

    Received the letter mentioned on the phone on 20/02/2017 asking about working aboard and receiving foreign benefits again, really not happy as this will be the 3rd time I have answered these 2 questions. Also another £1.74 spent to return the answers to the DWP .

    23 Feb 2017

    Proof of delivery received from Royal Mail tracking service.

    02 March 2017

    Received the PIP 2 forms today, informed in the accompanying paperwork that it must be completed and returned by the 21/03/2017.

    13 March 2017

    Received a text message at 8am telling me my PIP 2 form had not been received and that my benefits were at risk - it's not due until the 21st.

    Put the completed form in the post with supporting evidence (around 50 A4 pages in total) cost £2.37 for proof of receipt.

    14 March 2017

    Proof of delivery for PIP forms received from Royal Mail tracking service.

    17 March 2017

    Received latter dated 12 March 2017 stating my PIP 2 form had not been received and that my benefits were at risk - it's not due until the 21st.

    Recieved text message informing me that the DWP have received the completed PIP 2 form and supplied supporting evidence and that I would hear anon if I was needed to attend a medical.

    04 April 2017

    When to the GP to put in repeat prescription so took the opportunity to ask if the had received request from PIP for medical report yet – answer NO.

    Asked how much I would need to pay for a report – answer anything from £48-110 :-(

    08 May 2017

    Rang PIP to find out update on claim progress, spoke to a lady named Moria at 11:56 – she informed me that my claim form was sent to an ATOS assessor on the 17th March (7 weeks ago) and that they will contact me anon but that there is a backlog on their system.

    She gave me a phone number 0300 33 00 121 which is the direct dial number for the local ATOS assessment team for further information.

    Rang ATOS at 12:07 and spoke to Alison who informed me that my claim is pending an appointment, she offered to look for an available short notice appointment which I declined as I explained I have stated in my forms I need a wheelchair accessible venue and an assessor willing to be recorded. Alison stated I would need to provide my own recording equipment which I said I was aware of and already had possession of I was just enquiring a progress update as I hadn't heard anything in the 7 weeks they had held my paperwork.

    23 May 2017

    Had the letter informing me of my face to face appointment date today – Rang the ATOS customer service centre at 14:40ish and spoke to the lady to confirm the assessor was aware I would be audio recording the assessment as per my instruction on my form, she said she would send an e-mail to make certain the assessor was aware, and was able to conform wheelchair access to the venue.

    30 May 2017

    Received text message reminding me of face to face appointment time, date and venue along with a link to a map.

    2 June 2017

    Assessment Day – Time 13:15

    Someone called me at 9:30 to ask if I could attend early as they had had several cancellations today, I said I would try but couldn't come straight away as my carer doesn’t come in till 10:30 to get me out of bed, showered, dressed etc.

    My carer and I ended up arriving an hour earlier than my appointment although by the time they were ready to call me through it was 1pm.

    We were asked if it was OK for another ATOS staff member (male didn't catch name) to sit in to assess my assessor who was named Riskan (?), which we agreed. Riskan was not happy about being audio recorded and said she would have to go and speak to the manager as she had not been asked, I pointed out I had stated my intention 3 times and gave the exact dates I did so, the manager came into the room saw the recording equipment and said it was fine.

    The assessment took 2 hours which seemed quite long, Riskan kept asking questions and I answered as honestly, precisely and matter-of-factly as possible however there were several times when I tried to explain how my condition or medication affected a specific task she had asked about and she said we'll get onto your condition/medication later, which seemed strange as how they affect my ability to do the task is important to the ability to be able to do is safely, consistently, repeatedly and in a timely manor.

    She kept asking me what specialist I was under, I don't see a specialist as I am functionally stable at present so managed by my GP who will refer me where and when needed – I am worried this will be used against me.

    I did all of the physical exam apart from the squat at the end but did ensure she was aware that I would not be moving to my full range of motion only to the point my physiotherapist had stated was safe for me to move to which she agreed was acceptable.

    The chap who was assessing her didn't say anything or take part in the assessment apart from taking notes until the end when I asked how I would get a copy of her report.

    When we left the room My carer needed to loo before we left the building and as I was waiting she asked me if I was OK to which I said I was just waiting for My carer and then another staff member came to her and commented on the length of time my assessment took saying something like “that must have been a tough one” - not sure how I feel about that but ...

    9 June 2017

    Rang the DWP at 11am and spoke to Dawn about having my face to face assessment report sent to me, she said it would be posted 2nd class and so would arrive late next week, the report is currently with the decision maker and I should hear the decision anon.

    12 June 2017

    Received the ATOS assessors report, recommending 12 points for daily living and 12 points for mobility, giving enhanced rate payments for both sections and a review in 3 years time.

    23 June 2017

    Received conformation letter dated 16 June 2017 from DWP, Enhanced rate for both Daily living and Mobility from 19th July 2017 to 1st June 2021

  • Jean Eveleigh
    Jean Eveleigh Scope Member Posts: 186 Empowering
    ESA was just as stressful but again because I insisted on everything being recorded was awarded first time at an appropriate rate for me
  • Cress
    Cress Community member Posts: 1,012 Empowering
    I can't help but think the assessments are so stressful for people that they should be done away with.
    Considering the number of decisions that get turned around at MR or appeal they don't seem a very useful or cost effective way forward.
    I think Everything should/could be paper based.
    Any extra info needed could be requested before a decision via post or email.

    I don't think trying to fit a claimant to a medic with the relevant experience is practical, given that we're told the assessment isn't a medical I kind of wonder why they are used at all on phone or ftf.

    If claiments are unhappy with a decision then give the option of MR and/or tribunal with ftf or phone.

    I'm sure they're a million reasons why it couldn't be done that way, I just wish it was..lol
  • Adrian_Scope
    Adrian_Scope Posts: 11,392 Scope online community team
    Some really interesting considerations @chiarieds, would you be happy for me to share them with our policy team?

    Thanks for sharing your timeline and feedback @Jean Eveleigh, @cress and @Pugie, some interesting points and suggestions. Having sat in on many assessments before, I've often wondered about the benefits of paper-based only assessments but do worry that this could inadvertently put some people at a greater disadvantage. 
    Community Manager
  • chiarieds
    chiarieds Community member Posts: 16,195 Championing
    Yes, @Adrian_Scope - that would be fine.
  • unDAWNted
    unDAWNted Community member Posts: 2 Listener
    I should have had my face to face appointment last week (30th September) that morning I got a telephone call saying they would have to cancel due to the accessor being sent home ill. 10 mins later I got another telephone call from capita saying my assessment would now be done over the telephone and a date was set for 6th 0ctober at 10:30. I made sure my phone was fully charged and my papers were all in order. I waited and waited with my telephone right by my side but received no call! I telephoned capita on the number given at the top of my letters at 1 pm to ask why I hadn't received my assessment she asked the usual questions "had I given them the right telephone number? and had I got a blocker on my phone) I replied "no" and that they had never had a problem contacting me before! She apologised and said she would pass it on and if I hadn't heard anything within 7 days to give them a call back. I've checked my phone and there are no missed calls but I can't help but think I've been shafted and due to me not taking a call my claim will be ended!.
  • HJP290
    HJP290 Community member Posts: 45 Connected
    edited October 2021
    Hii my conditions chronic pain syndrome fibromyligia alloydina 

    these are all assements i have had so far 

    First assesment with industrial injurys was brilliant she was lovely understanding when recived report matched what i told her was awarded 37% which i agreeded . 

    first pip assement same again lovely under standing and was awarded standard care . When recieved the report once again was accurate and what and i agreed with it . 

    Esa work cabilitys i waited over18 months for this so by time this time my conditions and everything had deteriorated more so probs a good thing . 

    was man this time and he totally understood me and my issues i hadnt even had proper disgnoises at this point he said i totally understand it is hard when you have pain problems to get the right treatment and see people . so couldnt even tell him what i actually had just how affects me was on the phone 1.30 minutes went threw everything he told me do not to worry  .  I was assed at being lwrca and put in support group . 

    Pip change of circumstances 

    I put this is in because my mobility had gone from my condition affecting one leg had spread threwout my entire body . 

    Had the assement went okayish she didnt seem as friendly on phone and it just didnt feel like the other ones her tone etc . 

    Anyways i found out threw scope :) that can request a report soon as its done so did that . N found out still only awarded me standard care . And half of stuff that was said wasnt even in there . Also said i could walk more that 50 metres unaided i can barely walk 2 steps . Said i was abit teary at one point . She actually had stop interveiw coz i lost the plot . so more inaccurate stuff to . 

    Was hysterical after reading it. Rang sister she carmed me down and said she would help me do the MR once i got the offical letter . 
    So rang docs ask for all my consultants letters i was missing . Lost a few over years sending stuff in for assements n didnt get um back . 
    This caused a week long flare up . 

    But about 2 week after i got the assement report had a phone call from the descion maker .
    she didnt agree with the assesors report at all . She asked me some questions. I told her about the inaccuracies within the report. And she told me no to worry she awarded me the mobility part and wait for the letter she making the descion today . Week later got the letter got standard care. High mobility . Which i was happy with :) got me blue badge now for when needed . And back pay payed for my mobility scooter outright :) 

    re assement idustrial injurys was only award a year at first as we didnt no all these problems were going to devolop i still thought i was just problem with my disc from fall so just been for it yesterday . 
    As i said before i was classed st 37% loss of faculty before i no it should be alot more now .

    She was lovely understanding let me take my time threw the uosetting parts .

     there abit diffrent assement from normal ones . She asked me everything scanned my paper work and told me her thoughts about stuff as went along . Read back to me what she had put wished me luck with everything and keep positive :) and stop trying to rush the recovery and treatment one day at a time . 
    I never be the same again been told that by consultants but hoping they may be little improvement threw my treatment plan . 

    so dont no the outcome as yet but pretty postive it will be in my favour . 

    So overall i have been one of the very lucky ones even if had rubbish assesor for my second pip got a lovely descion maker who actually read my file . :) 

  • KoalaKatie1993
    KoalaKatie1993 Community member Posts: 3 Listener
    I was denied pip when I first applied (as a lot of people are) the report totally lied and directly contradicted medical evidence. 

    I was too ill for the appeal though. I was currently fighting for a surgery I drastically needed. I couldn’t fight both. The experience put me off. It’s been 3 years and I have finally reapplied as my medical professionals told me I should have been receiving it for years. 

    I just want the recognition of disability more than anything. 
  • poppy123456
    poppy123456 Community member Posts: 57,272 Championing
    KatB79 said:
    I'm currently in the process. They received my form back in June, just had the phone assessment a couple weeks ago and decision could be 2 months.

    Assessor made me go through an hour of monotone questions. Normally 30 mins is my limit. She didn't expand on anything, just repeated questions from the form according to my husband. He was there and he helped me at least. Stuttered through the whole thing trying to concentrate, except for one question I've been answering a lot lately 'what medication do you take'.

    For me, it's the lack of communication. DWP has had me on LCWRA (new ESA) since June 2020, not a word about PIP. I found out I could claim PIP aswell from my friend in March 2021!

    She hadn't known either! Saw a post on social media.

    I outright asked DWP if there was anything else...only to find out there's a carers element that hubs can claim. More money we've missed out on.

    Then no one tells you where you are with the process. It's really confusing.

    My assessor had a flat, disinterested voice like she couldn't wait to finish. Am now waiting for decision and will have to fight it if needed because we need the help.

    Really tiring, very stressful and unsupportive so far.

    When speaking to DWP you are ringing a call centre. They are not there to give benefits advice to anyone and they mostly read from a screen because they have very limited benefit knowledge.
    Carers element is part of Universal Credit and for your husband to claim this for looking after you then you must be claiming daily living part of PIP.
    If you're not claiming Universal Credit, Carers allowance is an option for your husband, providing you're claiming daily living PIP and he doesn't earn more than £128 per week (after deductions)
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • tanbang
    tanbang Community member Posts: 61 Connected
    I’m dreading my assessment in 2 weeks ?
  • Colin123
    Colin123 Community member Posts: 134 Empowering
    I have today sent off my latest PIP assessment for, took my daughter hours to fill it in, When I had DLA , it was indefinite, now told will be assessed  every three years Do they think we will have a miraculously recovery... some disabilities you can not see !!!  
  • happyfella
    happyfella Community member Posts: 504 Empowering
    I had a bad experience. I did not want to claim PIP but my doctors and medical team kept on telling me to claim it. I thought against it for a few years until i got fed up with my doctors going on about it.

    So, i applied. Then i went to the assesment. I was in a lot of pain that day. The assessor arrived around twenty minutes late and she appologized to the receptionist and said she got caugt in traffic. She then called me two minutes later to the office.

    I went in the office and as mentioned was in a great deal of pain. She asked me questions and then she asked me to do a couple of tests. I explained to her in normal circumstances i would struggle to do them, and at the moment it would be impossible, and some of them i could never do.

    So she said ok. Then she wanted to talk about the problems i have with my chronic pain and i went through everything with her. SHe then asked about my depression. I explained how it affected me everyday, and she turned to me and said if it was that bad why have i not tried killing myself, or not killed myself. I was shocked and very upset.

    The appointment affected me so much and all i could think about was her saying to me why have i not tried killing myself. it was on my mind all the time.

    I went to the doctors about it and they were shocked and told me to put a complaint in, but i hate complaining.

    Then a few weeks went past and i was told to ask to see the report. I got the report and it was like i was reading about someone else.

    She lied on the report. She said she was watching me for 15 minutes from the office and i looked fine. SHe also said that i did all the tests with no problems at all. She contradicted herself so many times. It is a long story so i wont go into it all.

    I was told to complain about the report and ask for a reconsideration request. it came back with no points like the original report. i was then told by my doctor to complain, so i did and my MP at the time contacted them. Two investigations were launched. One investigation reported that the assessor could not remember me and could not find her notes about the appointment. the second investigation that was launched at the same time reported that they did not believe what she told them and found the report she provided contradicted itself lots of different times.

    Even though i got an appology, they did not award me anything or change the amount of points.

    It really did affect me that experience. My doctor pushed me to go through the appeal and i said no. he gave me a contact number of an organisation who could help. i told them about how i could not go through it again and they convinced me to make a brand new application as it was quicker than appealing.

    They did all the paperwork for me and when i had the assessment over the phone, the lady was really nice. SHe told me she was appalled with the behaviour of the previours assessor. she said she had read the report and was really sorry this had happened to me.

    They awarded me the full award. My worry is though, that my award runs out in about one and a half years i think. I dont know if i could go through a face to face assessment due to the bad experience i had with the first one.

    I just do not understand evn today why the assessor lied. What was she gaining out of it.
  • Colin123
    Colin123 Community member Posts: 134 Empowering
    I had a similar problem about 25 yrs ago, the doctor assessing me came to my home, was in my home 20 mins, spent 1 hour 45 in his car outside my home, I lost my DLA benefits = asked for a copy of my report , everything in it was utter lies, was not asked to perform any tasks which he said I had and he said I had walked 20 meters up my garden , only had a small garden 6 slabs pathway long- I went to a tribunal, lost Motability but was given low rate care...I was disgusted, never done nothing for 2 years until doctor told me to re-claim, he filled part of it in, was given middle care and high mobility - have to mention also, after 1 year I went to C A B to enquire about how to go about having help filling in form , was then shocked on his reply - He said he will send me to an address to have help filling in form and he then said they will tell me how to ACT to get passed... I left so despondent but did phone and spoke to the manager , he was sacked straight away....would you believe it . sp shocked, I then waited a year longer for Doctor to nudge me... 
    On last ESA assessment, was kept waiting three hours , assessor was stuck in traffic, was only in the room 10 mins... The system needs a huge overall. 
  • Colin123
    Colin123 Community member Posts: 134 Empowering
    Another problem I came across recently , claiming for new blue badge as was out of date, The information they ask you to supply s almost as bad as claiming PIP, proof of all disabilities, benefits off PIP and ESA . 2 Proof of address  , Things seem to be getting more demanding... You can see why some people give up. We shouldn't have to go through half of the things we do, there has to be a more simpler way for everything, suffering is enough.
  • happyfella
    happyfella Community member Posts: 504 Empowering
    i have been put off from applying for a blue badge because of my experience.
  • Colin123
    Colin123 Community member Posts: 134 Empowering
    I had a call from PIP , they have received my form and it has been put on a pile , when it gets looked at (can not give a time limit could be a while I was told hopefully before September 2022) if no change could just receive a letter to say it will continue...If any change will be put in a queue for an assessment which because of Covid will be done over the phone. 
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