Feb 022016

I have been in receipt of Disability Living Allowance since 2000, and have had to reclaim every five years. As such I was sent a DLA reclaim pack prior to my claim coming to an end on the 23rd of June 2014. Initially I thought I had been sent the wrong form and checked that I was to complete the DLA reclaim form and not the new Personal Independence Payment.


For various reasons known to many of us the form took so much time to complete. Filling bits out here and there made even more difficult for me due to dyslexia. I spent hours trying to track down an electronic copy to fill in and eventually ended up scanning pages into my computer manually.


I finally finished the form and sent it off with every bit of medical evidence I had including a letter of support from my GP and waited.


At the beginning of August I opened my post box to see the dreaded brown envelope and my immediate thought was that it was a reassessment for ESA. It wasn’t it was a letter from DWP DLA Blackpool informing me that I was not entitled to claim DLA however my claim could be ‘treated as a new claim for PIP’.


Obviously confused by this I rang the DWP and asked for an explanation to be told that as the reclaim form had arrived at their office 6 days after the end of my claim I had fallen outside of the reclaim period and my DLA had ended on the 23rd of June. However, the information provided was enough for the claim to be treated as a claim for PIP and that I should wait for the PIP Unit to get in touch with me.


I asked for a Decision Maker to look at the decision again and was again told over the phone that my DLA had ended but the claim would be ‘treated as a claim for PIP’ and again to wait. The DM also suggested I might want to contact my MP about this issue, something I have never had a DM say to me or others I know.


I duly contacted my MP, to be honest in a bit of panic as I had been using my DLA to cover the £20.00 shortfall in my Housing Benefit as a result of the Bedroom Tax. My only relief was that I could never afford to use the mobility allowance for a Motability car and so at least I didn’t have my car removed. Although finding the money to keep it on the road I knew was going to be very difficult.
I explained what had happened and asked for someone to get back to me as soon as possible. Two weeks passed so I emailed again, this time even more stressed and panicked. Another week went by so I emailed again this time not so polite and deferential.


Finally, I got a response but to my previous email not the stroppy one and so felt even more stressed that I had not exactly made myself likable to a woman I was asking to help me. So immediately emailed again to apologise.


What followed was a series of emails between me and the person in her office who was tasked with ‘Welfare Problems’ arguing over where PIP was being rolled out and to whom, the understanding of various Regulations and Statutory Instruments (pretty much a pissing contest) which yet again impacted on my growing stress levels.

I really didn’t expect when I got in touch with my MP I would know more than the person I was dealing with and so ended my communication with her office with a ‘I thought you might be able to help; I now realise I was barking up the wrong tree’.


Apparently when you do this some people’s ego goes into overdrive, I was mistakenly copied into emails between my MP and the person ‘dealing’ with my case. In which he stressed again and again ‘I am right!!!’. I got one last email from my MP a short one liner “I am sure he is right, sorry”’ At that point I didn’t know who to be angrier with the DWP or my MP’s office who thought it was more important to be right than actually help a constituent.


By this point over a month had passed since my DLA reclaim had been rejected, financially things were getting very tight. I had to borrow some money to pay for the car tax was worried about winter because my home has rotting window frames and an inefficient heating system. I was starting to think that I would just have to give in and make a fresh claim for PIP and forget about the weeks I had already been waiting, which was little comfort as daily there were reports about how badly PIP was rolling out and the massive backlog of claims to be processed.


Despite trying and trying to get through to speak to someone at PIP the phone was either engaged or I was placed in a queue which I couldn’t afford to be stuck in on a mobile phone.


I checked my emails to see yet another email from my MP’s office where he detailed what he thought the issues were with the reclaim. After reading it I realised that right from the beginning he hadn’t actually grasped what my problem was and was just giving me general information. I explained again and also apologised for being abrupt but that this situation was having a very real impact on my health


I was graciously forgiven and then told how amazing my MP is and what a good job she does working with disabled people and that he himself had been congratulated for his breadth of knowledge on the subject at a parliamentary meeting. I bit my tongue because I realised even if my MP was of no use it was better for the DWP to think that an MP was involved in my case the hope being that they wouldn’t mess me about any more than they already had.


I managed to get through to someone in the PIP Unit who told me that the information about being ‘treated as a PIP’ claim was correct and that she would get someone to contact me urgently to explain the process and let me know what the progress of my claim was.


Three weeks went by and the promised urgent phone call hadn’t materialised. I contacted the Unit again only this time to be told the exact opposite of what I had been told previously. My stress and frustration at this point was going through the roof so asked to speak to a manager. I was put through to a Manager who officiously told me that both the letter and information received about the claim being treated as a PIP claim was incorrect and that the letter I had received hadn’t been ‘worded properly’ and he advised me to contact the New Claims department of PIP to request a claim form.


I was stunned, and again not my finest hour but I do remember saying rather forcefully that if he thought I was going forget about weeks of waiting he had another thing coming and did he enjoy earning a wage deliberately misinforming people and making their lives even more complicated and stressful than it already was. Again emailed the MP’s office to update them on this new contact. Then went for a drive to try and just get away from thinking about it and calm down. It was really hard not to feel that this wasn’t a deliberate tactic of the government to make it as difficult and as stressful as possible to dissuade people from claiming Social Security. The news was getting worse regarding the PIP roll out and peoples experience of it.

I then managed to track down what ‘treated as a claim for PIP’ meant.


SI 2013/380 – Interchange with claims for other benefits 


S25 (4) Where it appears that a person who has made a claim for disability living allowance or attendance allowance is not entitled to it but may be entitled to personal independence payment, the Secretary of State may treat any such claim alternatively, or in addition, as a claim for personal independence payment. 


(5) In determining whether the Secretary of State should treat a claim as made alternatively, or in addition to another claim (“the original claim”) under this regulation the Secretary of State must treat the alternative or additional claim, whenever made, as having been made at the same time as the original claim. 


Universal Credit, Personal Independence Payment, Job Seekers Allowance and Employment Support Allowance (Claims and Payments) Regulations 2013.



I sent this to my MP’s office and said that given this information could they please contact the DWP urgently and ask them what the status of my claim was. Which they finally did and on the 19th of September 2014 I finally found out that yes my DLA claim had lapsed due to it reaching the DWP 6 days late but my claim was being treated as a claim for PIP and would be backdated to the date of claim (for DLA).

They went on to apologise to my MP for the lateness of their response and gave an excuse as to why there had been a delay in dealing with my claim but nowhere did they express any acknowledgment to me and nor did my MP think it was worth pointing it out.


That was the last contact I had with my MP’s office, she had been little to no help, had increased my stress and anxiety and forgot to delete my address on an email thread where she had asked if her staff member could ‘bear getting in touch with me’. I had to spoon feed this person what the issue was and track down the Statutory Instrument that related to treating one claim as a claim for different benefit. The only thing I couldn’t do is make the DWP treat me with the same respect that they treated my MP.


I then waited till February 2015 for a Disability Assessor to come out to my home and assess me, then waited again for the outcome. It was an extremely hard winter my car broke down, I couldn’t’ afford to heat my home and my diet was the worst it has ever been.


In April I got fed up of waiting so rang for an update to be told that a decision had been made and money was in my bank. I had not been awarded the mobility component, the thing that I needed. So asked them to resend the original decision letter as well as an explanation has to how the Decision Maker had reached that decision.


I got that letter at the end of May the next day I got another brown envelope through the post informing me that after a Mandatory Reconsideration the decision remained the same! A Reconsideration I hadn’t asked for, but had impressed on the person I had last spoken to that I needed to have sight of the original decision and reasons because time was running out for me to decide whether or not to ask for a Mandatory Reconsideration and gather any further evidence I could in support of my claim.


I can only assume that someone at the DWP realised that my claim had been a cock up from start to finish and were covering their backs. I was at an extremely low point emotionally and mentally and so took the decision to not pursue it to appeal or even to argue about the fact that I hadn’t asked for an MR. I felt too deep into a Kafka nightmare to be able to do anything other than accept what I had been awarded.


My PIP claim from start to finish took 42 weeks, 42 weeks of hell that I never ever want to revisit. Even writing this has brought back some of the anger and frustration I felt at the time.


Do I regret not questioning the mandatory reconsideration or pursuing it to Appeal? Yes, I absolutely do, my car has finally reached the point of no return and my health has progressively worsened. I’m waiting for a neurosurgical consult and another MRI, being without a car has had a huge impact on my ability to take care of myself in terms of shopping, engage with anyone outside my home and getting to GP and Hospital appointments is now a major mission of planning and physical effort which I cannot sustain. So yes I do regret it but then again at the time I don’t know if I would have had the strength to have pursued it to the end and I suppose at least I am in receipt of the Living Allowance which provides enough of a cushion to start this whole sorry process all over again.

By Toni


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  12 Responses to “A long and winding road: From DLA to PIP”

  1. It’s absolutely disgraceful that people awarded indefinitely with DLA have to apply again for PIP ! I am about to go through the process today for my 24 year old son who is registered blind with a rare condition causing developmental delay and him needing lots of medicines to survive … years ago we had to go to appeal and when we got there the lady on the panel looked at jack and asked why are we here ? I replied you tell me ! Within a minute she had scribbled over the form I received and said this child should t be here and awarded it indefinitely… I’m afraid this is going to happen all over again … how is it fair that if it’s been awarded indefinitely then they go and change the benefit that these people need to go through this all over again ! I fear for my sons future when I’m not around to fight for him … Jack uses a long cane when out and can go no where without anyone … he is simply unable to because of his sight and his developmental delay … im just so furious that people who know nothing about the struggles disabled people and their carers have make these changes and then the changes fail them.

  2. I am still on DLA, indefinitely is what last years award letter… So am terrified I am next to be dragged thru a system that is allowed to breach every human right or civil liberty I have as an adult with disabilities since birth.

    But my DLA claims and applications were ALL denied until 2010.

    Even my LA, are trying to cull my support package… Together they will KILL ME.

  3. For everyone going through the process of DLA to PIP.Look up the site BENEFITS and WORK. Its an online forum for members and guides to help you complete the application forms for pip.It has lots of useful information and tips regarding the process of PIP and rule of law to qualify for pip on each descriptor. Unfortunately you have to pay a subscription. Just under £20 for a year but it is well worth the money.and the information is invaluable.

  4. I’m so sorry, I’m going through my own hell with being over charged for care then while it was all going on didn’t receive the care I needed. It’s a minefield trying to work it all out, find away to prove the private company lied. It has made me much sicker iller than I already was. I even tried to kill my self with the stress of it and the insanity of it all.

    I’m on dla indefinitely I hate how just like that it will be gone and I have to fight again, the income support form to esa took over 8 hours I vomited a lot, no one got back Intouch to tell me it was all ok not for a year did I here, then when the money was meant to go in there, it didn’t mores stress. Every penny is spent, on the care Finacial assessment they never asked me the costs I incur due to being sick n disabled, it’s crazy. The whole system is set so the sick give up and the ones they say they toughened it up for well they are happy to fill in more forms there not stressed or sick.

    I hope at a later date you reapply for mobility perhaps get as much information together first, explain at appointments how the system has changed and what it needs to show how it effects your life not just the condition ❤️

  5. Well, the more I read about the people being swapped from DLA to PIP, the more I fear for my own future. I have been receiving an indefinite award for DLA for quite some years and in the process have undergone several medical assessments at a variety of centres. I am now waiting for the PIP application forms to arrive, presumably in the not too distant future, when I expect to be chewed up and spat out by the same useless system that has so far wrecked more lives than it has helped.

    As I have repeatedly read, this changeover is not about ‘Independence’ it’s about unjustifiably depriving the needy and vulnerable of their means of remaining a useful and active part of their respective communities.

    Sure, I have mobility and other issues as a result of a spinal cord injury. Pain is a constant companion and my walking is extremely painful. Like most people in a similar situation, I do as much as I can do, regardless of the pain levels. My first duty is to myself. Do I sit in a chair all day and vegetate or do I get off my arse and try to look after myself within the parameters I have and which my condition allows ?

    There seems to be no logic or proper reason when making decisions and ceetainly no proper justice for those wrongly assessed. I genuinely fear for my future. I, like everyone else, am at the mercy of a system that is not fit for purpose, run and managed by people who are not properly qualified, who are wrecking lives at the stroke of a pen.

    What a corrupt, vindictive, system. How did we ever get to this ?

    • Hi Harry

      My strongest advice would be to contact an Advice Agency and submit the claim with their support. Even if you complete the form yourself please get some help on how to word your claim and fully understand what ‘planning and following’ a journey means in DWP speak.

  6. Debbie, that’s brutal. I know somebidy whose DLA is due for renewal, and will try to learn from your horrible experiences. A sincere Thanks – Joe.

  7. i know this assessors are inthe medical indrustly,butfor all i know,i could be sent a porter.Will let you know what happens on fri.I really do not like being lying to.I just wish i had someone there to support me.

  8. the next thats happenedis that i have found an advocate.We went to triburnal in dec 15.this was to discuss my assesssment over my mobility.when we walked in,we were told that the panel was only interested in what happen 2 yrs piro,went i travelled to london.i explaind my father was dying.my advocat pointed out several time,we were her to discuss the assesssment of oct 14.
    i have now been advised to go for an appeal.i was waiting for an application form.4 weeks late nothing arrived.my advocat ph PIP,to be told they dont know anything about an appeal.what should have happend next,after the form was sent in with new medical evidence,then it goes to the descion maken.and then if its not awarded,i get assessed agin.oh no thats not what happened.i have just rec aletter,telling me ,im to be assessed agin,this fri.i rang PIP and said i had no form,but have new medical evidence.oh i was told i could send it in ,buy thery were not really interested.i really hate this assessments.I would prefer a GP.

  9. i am so sorry you went through all that.I was in a simlar position.having been awarded before DLA in 1984,then onto DLA in 94.Like you i had many medicals over the years.
    I got my first car with handcontrols 3 years go.Due to my age ,i had to apply for PIP.
    an assessor came in oct 14.i asked her if she was medically traind,she said no.i asked if i could loose my benefits and car,she said no.i could loose my job if i did that.I live alone and have no support.so you can imagain how i felt,when that brown envelop earrived.I was horrified that 10 days later i lost my car.
    I then went to have 2 private medicals.as well as a gp,s letter and a letter from the pain clinic.I had a ph call from PIP.in may 15,telling me that the letters were useless as they are all about your joints and pain.She then told me,that my joints and pain has got nothing to do with my walking.Bythis time i was thinking ,i must be crazy.i wasalso told that the desion maker had not looked at my case.i asked who made the desion to have my car remove,oh that was the assessor who visited.

    • So basically they are wearing and tearing us down with their disinformation and misinformation making us go through hoops.

      It was Feb when you last wrote, I hope you managed to get your claim sorted?

  10. You live & learn Debbie. Every bit of benefit now has to be fought for. Its survivall of the fittest of the sickest..

    Was downgraded from the support group to wrag after presenting with another health condition that affected my mobility? Because of this chronic illness i was found fit for work within a year . I immediately asked my GP if there was a cure for my condition. No it will most likely get worse was the reply.

    I like you had to do my own research & found something called a “supercession” . Despite lots of negative feed back from everyone i dealt with, citizen advice, helplines etc who said I risked losing all my benefits. I went ahead. I won.

    Buy a disability handbook. Yes u have to buy this. No freebies for us. And keep on top of every bit of legislation about disability

    Remember There is no logic to benefits. I leaned this when i was a CAB advisor. And MP’s are useless at benefits (also student loans) You use their name & status to get yr problem attention. They never solve it. Thats up to you. Disability is now a full time job . If u need benefits then u have to work for them.

    Please don’t lose heart. You now have knowledge of how the system is administered. Next time it will be easier

    Chin up & don’t let them win. You need that car !

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