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.
    Sarah · 1 years ago
    Hello, they have been similar with me - received the review last year to return by September 2021 - which i returned by recorded post on time - heard nothing, no text, no call, no letter. So anxious. Then eventually my support worker called in New Year and they gave verbal agreement they had received it - and I shouldn't worry as it's not due to run out until July 2022. We called again February 2022 and this time told I would get a text to tell me I would have a telephone consultation in around 4 weeks time, and again not to worry etc etc. Well, it's end of April now and still no text, no call, no letter and nothing in writing about these verbal exchanges - so I am very worried ... and it's due to just end very soon with no idea what to believe and if it will be okay. I hate having to contact them they are so affecting,... They just get worse.  Why do they get away with it still?  All from them should be recorded and in writing.
    • Thank you for your comment. Comments are moderated before being published.
      Ella · 1 years ago
      @Sarah Hi,

      DWP record all their phone calls and you can request a copy if you know the date and roughly what time you rang. You should be able to get that off your phone bill. Useful to know if you need to prove you have spoken to them, and what they told you. 
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    Mo · 1 years ago
    Hi I am in a similar situation to many on here still waiting for review, documents been in for 10 months with pip apparently being extended for 3 months at a time while I wait but me not being informed. I discovered that what you need to do is ask for a copy of your Statement of Entitlement which you can then use to renew Blue badge etc. 
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    Lady · 1 years ago
    They have stopped my Pip, the reason why they are saying I hadn't sent the review form back in time. Which I did 
    • Thank you for your comment. Comments are moderated before being published.
      Lee · 1 years ago
      @Lady Should always post forms recorded delivery hence it's proof you've returned them
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      Welfare · 1 years ago
      @Lady Request a mandatory reconsideration and 
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      Gill R · 1 years ago
      @Lady Same here and it's impossible to get through and speak to anyone most of the time 
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    Shrimp · 2 years ago
    I got a letter several weeks ago saying to ensure my review form is returned within and it was due in 2 days time - I had not received any forms was quite surprised as it was extended to Jan 2023 - tried to ring was on hold for about 4 hours in total so did recorded delivery letter to tell them no form received, kept trying to get through but no luck, so wrote again, then got a letter saying payments stopped as no forms returned, I eventually after total of 6 hours over 3 days spoke to someone who spoke to case worker and said payments would get reinstated and another form would be sent, 2 weeks later - nothing - no money - no form, again after hours got through and was told case closed and that I had been given false info last time - she said my recorded delivery letters logged on screen, she spoke to a case worker and said a form would be sent but no payments would be made until form received....  I should have got 50% car tax discount but because of this I could not apply for it....(my tax is £265) so I now wait a form....  shabby DWP
  • Thank you for your comment. Comments are moderated before being published.
    Katie · 2 years ago
    Can someone help? I done my form in September 2021 for a renewal of PIP. Since I haven’t heard anything so I called them today and got informed I need an assessment. When you do a renewal do you usually have to have an assessment? I’ve looked it up but I can’t find anything. 
    • Thank you for your comment. Comments are moderated before being published.
      Lee · 1 years ago
      @Katie I know they have been doing telephone assessments for some
    • Thank you for your comment. Comments are moderated before being published.
      Mindy · 1 years ago
      @Katie The majority of people do go for an assessment even if it's just a renewal. Especially if you stated that your condition has worsened 
    • Thank you for your comment. Comments are moderated before being published.
      Carol · 2 years ago
      @Katie I’ve just rang dwp and been told I’ve to go for another assessment I got awarded first time for 5 years can’t believe I have to go through it all again 
  • Thank you for your comment. Comments are moderated before being published.
    Jason William Lee · 2 years ago
    when will they stop pip and esa assesments for depression?
  • Thank you for your comment. Comments are moderated before being published.
    Michael · 2 years ago
    I received my renewal form back in August 2021 which needed to be return by the 1st September, I received and text to inform me the form had been received. I phone them in December 2021 as not hearing anything else back just get told its with my case manager and they have all the information they need. Its now 27 weeks and I've still not heard anything back from them. I am now getting worried as my motability car is near to replaced 
    • Thank you for your comment. Comments are moderated before being published.
      Michael · 1 years ago
      @Michael Update on my progress I had a telephone assessment on the 3rd August 2022 and the pip extension run out on yhe 1st July told it would be upto 6 weeks before I hear back but know found that my pip as not been paid this month 
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    Mandy · 2 years 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 · 2 years 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 · 2 years 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 🙏
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    Adam · 2 years 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 · 1 years 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.

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    Adam · 2 years 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 · 2 years 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 · 2 years 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 · 2 years 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 · 2 years 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 · 2 years 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 · 2 years 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 · 2 years 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 · 2 years 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 · 2 years 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.
  • Thank you for your comment. Comments are moderated before being published.
    jeanette williams · 2 years 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
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