Renewals for PIP are in a state of chaos, with claimants left terrified that their PIP is suddenly going to stop because a new decision has not been made by the time their award is due to end.

Last month, after hearing from members whose PIP renewals had been delayed due to a lack of available assessments, we asked readers to tell us if they’d had similar experiences.

The responses we’ve received make it clear that the PIP renewal system is currently badly broken.  

The main cause of the chaos appears to be an increase in the number of fresh claims for PIP and a decision by the DWP to prioritise these over existing claims, but without any effort to explain what is happening and give claimants a written extension to their award.

We can report, however, that so far we have not heard from anyone whose PIP award has actually been stopped due to a failure to make a new decision.  Instead, awards seem to be being allowed to run on, but frequently without the claimant being told in writing that this will happen.

Anxiety of not knowing

It is this entirely avoidable uncertainty about whether their award will suddenly end that is causing enormous anxiety for some readers.

“Had to extension due to covid & renewal form in May 21, completed returned with all consultant letters etc returned by 17th May 21 ( 13 July 21 cut if date for forms). Since then I’ve rung 4 times, to be told its waiting case manager review, last week my Mental Health support worker called and was told it’s in next batch for assessment call, can't say when it will be.  PIP ends 12th March 22. How am I going to cope I’m losing my sight can’t go out as stuck on 1st floor flat no lift,my anxiety is off the scale . . .”

“I sent my forms back in June 2021. They have received them but I'm still waiting for a decision. I'm still receiving my low rate care so that's a blessing.  But it is very stressful waiting to see when I check my bank whether they have paid me or just stopped my money.  It’s been the case before that its stopped THEN I get the letter.  Something is seriously wrong with the benefits system and it needs a complete overhaul in my opinion.”

Some readers have even been told that it is their responsibility to keep chasing up their renewal:

“Yes, I too was given an extension to 28/2/22 followed shortly after by a review form. I returned that in April 2021 and have phoned three times. The first time they confirmed it had been received, the second time it was with ‘the DM’ (Decision Maker) and the third time they agreed I had been waiting a long time so it would be sent to a ‘Case Manager’ at Capita. I was told to ring again to chase it up at the end of January. Apart from being desperate for a decision due to the anxiety this is causing, why should it be up to us to chase our claims? I’ve written to my MP about this but he has not even had the courtesy to acknowledge my email, let alone reply. Covid will always be an excuse and I do realise that everyone is busy but this treatment of people with disabilities and health problems is causing severe anxiety, harm and can only be described as disgraceful.”

Another reader has received a range of different explanations for the delays to their renewal and is even worried that they may end up with a large overpayment bill:

“I received a letter in 2020 saying my pip was extended due to covid. I then received a renewal form in June 2021 saying unless I returned by 31st July my award would stop.  In passing during a phone call they said it was extended to September, they did not inform me of this in writing.

“I’ve been told when chasing various delays - it’s still in a backlog pile or it’s with an assessor for an assessment.  When the organisation that has supported me writing my application chases it they said “Oh no, it’s not going for assessment at all it’s just in the backlog pile”.  I’ve chased again last week and been told it is with assessor but no date been given - they have told me if I have not heard by March (when my claim ends apparently although I’m now so confused when my claim ends) I’m to ring and chase again.

“So in summary I don’t know when my claim ends - I don’t know whether I need an assessment (this causes me huge anxiety as I’m agoraphobic as well as other medical issues) - and more recently I asked if they change my claim will I have to pay anything back - they stated I would only have to pay back if it was deemed I had failed to tell them a change - well there has been changes but only worse as I’ve now been diagnosed with a neurological condition .

“so I’m left confused and very anxious - my renewal has been with them since July 2021.”

Reassurance given

Some readers have been reassured by the DWP that their claim will not end if a new decision is not made in time.  But even then, this has been done verbally but not in writing.

“I received my review forms April ‘21 and returned them in July. I was lucky enough to have 3 months to complete & return form. My original award was extended until March 2022.

“I emailed them a couple of weeks ago and actually got a response: there has been an administrative error with my claim form and they have passed it on to the assessment team.

“Reassuringly, after I had queried if my award would stop in March I was told ‘ Please rest assured that your PIP will remain in payment until a decision is completed and if there is an increase to your award the difference will be paid back to [review date].”

“I sent off the PIP renewal form on 31/8/21 by registered post. as I had not heard from the DWP by 31/12/21, I called them in early January to enquire why I had not heard anything. I was told that there was a massive delay owing to Covid and that I should not worry as the DWP will get back to me. I continue to receive my PIP payments every month - it has not stopped.”

Change in condition

Some claimants, however, are desperate for their award to be looked at again because their condition has worsened and they now need more financial support.  In these cases, every week without a decision simply makes their position harder to cope with.

“Nightmare! Notified DWP in June 2021 of a deterioration in my condition - heard nothing. Received a PIP review form in September which I returned on 6th Sept advising I was waiting for Neurologist appointment. Inevitable letter saying they hadn't received it etc etc. Phoned in Nov to be told claim was 'on the system' but not yet being assessed. Phoned again in Dec to be told it will be well into 2022 before I hear from them. Sent copy of letter in Dec from Neurologist confirming I have a muscle wasting disease and it is likely to be Motor Neurone Disease, MS or some other unpleasant conditions. 26th January now and still no communication whatsoever. So angry, frustrated and worried!!”

“I have been waiting 12 months for my pip renewal and been told it could be a other 8 months to wait.  Is this ok?  I have had changes to my health but have not been able to tell them about them.  Is this right to wait this long?”

“I sent my renewal form back to the DWP September 2021 they received them on 6th September 2021 I chased them up on October 21st 2021 agent said because my condition has worsened I need an assessment he said I would receive a letter about it still waiting for this and it’s now nearly the end of January 2022, in November 2020 I received a letter saying my PIP award had been extended for 9 months ending on 22nd July 2022 I’m getting quite concerned now.”

Further information

We have now made a Freedom of information request to ask what guidance is issued to decision makers for dealing with cases where an assessment has not been carried out close to, or at the time, that an award is due to end.  We have also asked for any statistics which show whether the number of claimants who have not received a timely renewal decision is increasing.

We’ll let you know when we get any responses.

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  • Thank you for your comment. Comments are moderated before being published.
    Mandy · 5 months ago
    They stopped my PIP on 21st November 2021. I wasn't sent a review and when I called them on 21st December 2022, I was told that the DWP don't have have to contact. I asked whether they had a duty of care and she said they didn't. Told me to reapply.

    I was devastated. I had to return all my families Christmas presents as I could no longer afford the. I don't put the heating as it's too expensive, I wear my dressing gown instead. I have lost weight as I only have £8.00 spare for food.

    I spoke to my MP and he is helping me. I have had a call to help me with my application from DWP and also got a call from a case manager. It's really affected my health and I really don't think I can wait 20 weeks.

    PIP is in chaos. It's cruel and not fit for purpose.
    • Thank you for your comment. Comments are moderated before being published.
      Shrimp · 4 months ago
      @Mandy I never got a review form either and they stopped my payments, I wrote to them twice but these letters got ignored, now waiting a form....will not hold my breath
  • Thank you for your comment. Comments are moderated before being published.
    Mark · 5 months ago
    Hi Guys
    it’s my 1st time posting I’m new on here, I already have standard PIP daily living allowance but have now been told I have to have a phone assessment & was just looking for some tips to prepare for call I have heart failure & have had an ICD implant since last I spoke with them, any help would be gratefully received thank you 🙏
  • Thank you for your comment. Comments are moderated before being published.
    Adam · 5 months ago
    Update guys, I have been given enhanced mobility before I had only enhanced daily living. I just rang them up and told them I was very depressed and that I had sent all evidence in already etx. They looked at it again and apparently a case manager just made the decision based on “evidence” I must stress that u need lots of evidence and it’s needs to be sent to them instantly if you want your case to get looked at. I had sent my forms back 26th October and have been given new award.
    • Thank you for your comment. Comments are moderated before being published.
      Allan · 2 months ago
      @Adam Allan ( on behalf of wife Jayne )

       What a disgrace, my wife has been waiting over 12 months for her PIP renewal to be granted, they constantly extend by 6 months , but in order to renew her motability car she needs a minimum of 12 months, so we have had the same car for over 4 years now.
      The car is in the garage being repaired more than it is on the drive , so almost no reason paying for it .

      Her condition has not changed at all and each time i phone them it is with a different department and will be sorted soon, have been hearing this for at least 8 months, plus so many different excuses i've lost count.😪😪😪 👈👈

      I can't understand why they are concentrating on the new claims rather than the existing ones.

  • Thank you for your comment. Comments are moderated before being published.
    Adam · 5 months ago
    I have been waiting since 26th October been calling every other week and still the same stupid answer , we have a back log bla bla bla , they don’t know how to manage the back log that’s the issue! It’s been over 18 weeks now still no review even though exhaustive evidence has been sent. They can’t manage to make an informed decision. Yet other people are getting their reviews within a week or even a month and it’s very unfair. I feel there is some sort of discrimination against disabled peopel whether it be race religion or sex definitely because it doesn’t make sense
  • Thank you for your comment. Comments are moderated before being published.
    Maz Elaine Kirby · 5 months ago
    What do I do?I have sent letter and email. I have profound hearing loss.And need face to face assessment. But they sent out for the 10th March for a phone
  • Thank you for your comment. Comments are moderated before being published.
    Sueh · 5 months ago
    My claim was due to end Feb 22 but was extended to Nov 22. I received review forms beginning of January 22 and completed using Benefits and Work guides. Having read other posts about delays for reviews I was extremely surprised to receive the verdict on 24 Feb 2022. Enhanced for care and enhanced for mobility to be reviewed after 10 years this time. I can only imagine that this was due to the thick pile of documents drawn from my health records alongside all the tipsy I have gleaned from this website. THANK YOU SO MUCH. PLEASE KEEP UP THE GOOD WORK
    • Thank you for your comment. Comments are moderated before being published.
      Anne · 5 months ago
      @Sueh That’s impossible and very unfair that they’re picking and choosing who they assess first
  • Thank you for your comment. Comments are moderated before being published.
    Anne Radford · 5 months ago
    My pip claim was due to end May 2021 got a letter extending it until 23rd February 2022. Then received a form with a month to return in July which I did. I have heard nothing rang up this week to be told not to worry my claim was extended to 2031 but still nothing in writing said if I heard nothing to ring back in a couple months very stressful
  • Thank you for your comment. Comments are moderated before being published.
    Darren · 5 months ago
    Hi I have been waiting since August 2020 for the results of my wca despite having another one in October 2020 so two in one year and still waiting
  • Thank you for your comment. Comments are moderated before being published.
    nickthebottlewasher · 5 months ago
    My OH returned her PIP renewal form back in August 2021 but has heard nothing. She rang them last week and was told that there was still another six months to wait. She explained that she needed a letter so that she could renew her Blue Badge which expired as well, but, needless to say, she didn't get it, so now she's having to be reliant on family or friends to even go shopping!
  • Thank you for your comment. Comments are moderated before being published.
    Gully · 5 months ago
    Gully Hi could any advice me as to what I should write on my award review. If my condition has stayed the same. Worried I might get taken of high rate. Could someone advise me pls would be vey grateful. Thanks. To all benefit and work forum. Thanks again for your good work.
  • Thank you for your comment. Comments are moderated before being published.
    E Price · 5 months ago
    My daughters PIP was stopped in October last year and she hasn’t received a penny since then.
    She returned the forms for renewal to them and sent them in a timely manner. Now almost March and they haven’t been in touch with her at all!
  • Thank you for your comment. Comments are moderated before being published.
    not peopley67 · 5 months ago
    my original claim was awarded in march 2019 and I appealed and won through the mandatory route, so it was adjusted up in the august and back pay applied. It was for 3 yrs. I received a letter middle of last year informing me they had extended my award from March 2022 to Dec 2022 because of covid etc. So I was expecting some sort of contact in regard to this being the new end date in the summer. I received the AR1 forms end of Jan still quoting the original end date in March and told the forms needed to be back by 27 Feb 2022. It feels like you might as well take any letters or dates your award runs to with a pinch of salt basically and they don't seem to know what they are doing. Since I sent the Ar1 form back I've received another letter saying they haven't had it, and seeing as it clearly states if you don't send it back your whole claims stops and you'd have to start from scratch I spent over an hour on hold this morning waiting to see if they have actually got it. They have but was only 'scanned in' today which is nearly a fortnight since I posted it and only 1 more available week day until they'd cancel my claim totally. I am very nervous as I have read people have had their claims stopped as they haven't been to a Dr all through covid, and like them, neither have I, I have sorted myself out and had phone appointments with other departments who were dealing with me. How can they say you're no longer ill just because you didn't go to see a doctor. If you only had one leg and you didn't go to a doctor would they think it would have grown back in 2 years, ridiculous.
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    jeanette williams · 5 months ago
    im in the same boast sent my forms of last june been told its in queue for an acessoer runs out march 19th what happends if the descion goes against me i dont know the all sitution is a joke ive rung many times got my mp invloved only to be told it stil in a queue ive got mental health problems and it just giving me more excity
  • Thank you for your comment. Comments are moderated before being published.
    Lynn Massey · 5 months ago
    I informed PIP of a change as I had fractured my pelvis. You are advised to let them know of changes. As a result I had to have another face to face and my payment was reduced! I appealed and took it to tribunal as the obnoxious interviewer did not read my notes and she lied. I won my case but will I inform them of changes again. I doubt it.
  • Thank you for your comment. Comments are moderated before being published.
    Sheila · 5 months ago
    If the PIP continues to be paid even after the set deadline - as I can read here in some comments for reassurance - does that mean that when the decision is finally made, and - God forbid - it's negative, then the applicant needs to pay it all back to DWP or the payback will be left pending until the decision of the tribunal?
  • Thank you for your comment. Comments are moderated before being published.
    delabutte · 5 months ago
    My PIP was awarded by the Courts at an Appeal. Last year I applied for a renewal, as there have been no changes in my health circumstances. I had a telephone assessment in December. In late January, I was informed that I didnot qualify for PIP - one of the reasons given is that I have not been seen by my GP in over 2 years! I have had telephone contact with the GP and have been seen by the practice nurse but the GP has not been "seeing" patients during the pandemic. Even though I reported that I could really only walk a distance between two lampposts, but would need to stop because of the pain. This came back as "I have decided you can walk a minimum of 209 metres unaided. Needless to say, these are just two examples, of many, where everything I have said has been disregarded and the pandemic/lockdowns, etc., have been used by DWP to show people have "not bothered" with health professionals, rather than they have been denied access to them. The whole assessment criteria and the way the DWP interpret their own rules seems, to me, to be ridiculous.

    My assumption is, they want me off PIP as I will be eligible for the state pension in June. I went to Citizens Advice and they have put in a Mandatory Reconsideration letter for me. I assume that, as they did 4 years ago, the result will be a further rejection of my claim, so I will be taking it on to appeal again.
  • Thank you for your comment. Comments are moderated before being published.
    Pat Kirwan · 5 months ago
    Hi, I had my Pip renewed, but as it was previously given/awarded at a tribunal, this did end on the end date whilst I was waiting for my new renewal. I was told this was because there was an end date on it, as it had previously gone to Tribunal that it had to end that date even tho my new renewal was still being processed! I asked regarding an extension due to Covid, and they said sorry no, as my case went to Tribunal and was given an end date that it couldn’t be extended whilst I waited for my new tribunal date. Which I don’t think was fair. It stopped for 3 months. I then went to tribunal for renewal again, and was then awarded it, with having the 3 months backdated arrears awarded to me then. Which isn’t the point, this shouldn’t have stopped and I was not paid for 3 months.
    • Thank you for your comment. Comments are moderated before being published.
      Susan · 2 months ago
      @Jane Get help from your CAB
    • Thank you for your comment. Comments are moderated before being published.
      Jane · 4 months ago
      @Pat Kirwan I have not recieved my renewal form my pip ends this month what do I do
    • Thank you for your comment. Comments are moderated before being published.
      MrFibro · 5 months ago
      @Pat Kirwan Hi Pat

      It's so ironic the dwp wanting to scale back on court cases, only to create more appeal cases by stopping claimants monies, when they should had just simply continued until a final decision had been made.

      Thing is its not our jobs to reach the decision, it's theirs, and if they cannot get through cases even after say 6 - 9 months then it's on them to continue paying and not to expect the claimant to pay monies back. Or have i got it wrong ?
    • Thank you for your comment. Comments are moderated before being published.
      Sheila · 5 months ago
      @Pat Kirwan Pat, I want to ask whether you were represented by a lawyer or any other legal representative when you appealed at the tribunal? Or you presented your case as a litigant in person? Thanks.
  • Thank you for your comment. Comments are moderated before being published.
    Ste k · 5 months ago
    I got my renewal form and sent it back in July 2021, they confirmed that they have it, not had any word on their decision and still getting paid, but as other people have said its stressful, they seem to be trying to put disabled people in an early grave, surely this kind of treatment by the DWP towards disabled people is in it's self discrimination.
    • Thank you for your comment. Comments are moderated before being published.
      Bev · 4 months ago
      @Ste k Exactly same 4me I sent renewal back on 15th Aug 2021 (had a 2 week extension as my husband died & he was my carer & my whole world was in state as I was assessed & given carers from a company) I haven't heard nothing since but still getting paid but I dread everytime it's due in case it suddenly isn't there as award was due to end/be reviewed September 8th 2021.... Its now March 23rd 2022!!
    • Thank you for your comment. Comments are moderated before being published.
      MrFibro · 5 months ago
      @Ste k Hi ste k,

      when was it due to run out ?
  • Thank you for your comment. Comments are moderated before being published.
    Jo · 5 months ago
    I received renewal forms on the 16th December 2021, letter dated 2nd December, renewal forms (only did a year ago) and wanted it all in by January 2nd 2022 ,
    So they set me up , to fail, knowing that they close over Christmas and not back in the office till January , also over Christmas, having to get forms and evidence, doctors , well that’s hard enough anyways
    I feel utterly disgusted how DWP treat people that are ill
    this has had a massive impact on my mental health and that makes my physical illness much worse
    Shameful
    • Thank you for your comment. Comments are moderated before being published.
      Gee · 5 months ago
      @Jo Hi Jo, you should have phoned them and asked for an extension. I was in the same dates muddle and couldn't get assistance with mine until the second week of January. As It was the first appointment I could get, they allowed an extension and Aspire who also assisted me to get my thoughts down ready for the form over Christmas bless them, said if needs be they would request another extension. It never does my ptsd any good so I understand you.
  • Thank you for your comment. Comments are moderated before being published.
    Gilly · 5 months ago
    I have been lucky after reading these comments. PIP renewal ended 1 May 21, then extended to 21 August 21 for them to look at the claim. DWP then looked at claim and decided to end the claim on the 30 July 21...We then went for the MRN which again was refused. We then went ahead with a court appeal at the beginning of December 21. Out of the blue I received a phone call on the 12th January 22 from the DWP stating they were re-instating it. Great News. Now I have to wait for the Carers...this could take up to 12 weeks.!

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