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Disability benefits without the fight

Adrian_Scope Posts: 8,078

Scope community team

edited October 1 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
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  • Jean Eveleigh
    Jean Eveleigh Member Posts: 156 Pioneering

    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 Member Posts: 156 Pioneering
    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 Member Posts: 927 Pioneering
    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
  • Pugie
    Pugie Member Posts: 6 Listener
    Maybe it's time the DWP really thought this through and started hiring disabled assessor's who actually know what it's like to live with a disability and how it effects that persons life. They want more disabled to work and this would help other disabled people feel reassured that they were been fully understood. Lets be honest nobody likes discussing very personal issues with a stranger and we tend to hide them details rather then discuss them. 
  • Adrian_Scope
    Adrian_Scope Posts: 8,078

    Scope 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. 
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  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,516 Disability Gamechanger
    Yes, @Adrian_Scope - that would be fine.
  • idontlikeliving
    idontlikeliving Member Posts: 119 Courageous
    From my point of view I think people with mental health get chucked to the curb. I have never gone through such a stressful process than the pip. It is ridiculous. I think that professional mental health nurses should be to assessors for people like me. No one will understand mental health unless you have specialised in it, or have suffered with it…. I am good friends with someone at the JC who helps disabled and people with mental health problems and she outright says it needs to change. 

    This is just my opinion on what I’ve gone through. And what I’ve spoke to a few others like me outside of this forum. 

    There is so many illness’ out there and there is professionals what understand most of them. I think a certain professional should be assigned to someone who is suffering from what they are educated in. 

    Also, the phone calls need to be longer, not rushed. 

  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,516 Disability Gamechanger
    I'll agree on some points @idontlikeliving -  I only have physical problems, but also found the PIP process stressful....right from completing the claim form; it's not much fun describing your 'difficulties' particularly as my son was writing it all up for me (I can type rather slowly, but writing is difficult due to a previous injury). It's not great for any of us to say how we are, as so often we try & cope, but you don't realise sometimes how bad you are until the form is completed.....my son was rather shocked as he didn't realise how badly I was affected, but I don't think writing down how we are helps any of us; it's depressing, & I'm sure likely to be detrimental to many people with mental health issues.....please don't think I'm minimising this.
    In an ideal world I would agree that having mental health nurses (or others specialising with an understanding of this) would appear great, yet the PIP assessment isn't a medical. Exactly the same, only different, there's not even a specialist that understands my combination of disorders (in the UK), as I've said above.
    I don't unfortunately see how more mental health nurses/professionals can be recruited as assessors, so I think the main thing is to go with the flow.......I think the main problem is it's not obvious to many (& I include myself as I went through the PIP process prior to joining this forum) as to how to 'successfully' complete the PIP claim form, this can then lead to not knowing what an assessment will be about, having to do a Mandatory Reconsideration, then an appeal, where, if actually done correctly, you're then listened to. I hope this forum can help members navigate the PIP process; it really is my sincere hope.

  • unDAWNted
    unDAWNted 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 Member Posts: 26 Connected
    edited October 8
    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 . :) 


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