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.
    Amanda L · 5 months ago
    I am in this situation. My claim is due to end in March. I sent my form back in August. As I hadn’t heard anything, I called them last week, and was told there is such a backlog, mine just hasn’t been looked at yet, but that if it hasn’t been looked at by March, my payments will definitely continue, and I should get it in writing that it will continue for another year. It’s a huge worry, and also, my Blue Badge will run out in March, when my award is due to end. I’m not going to be able to apply for another one if I don’t get it in writing that my award has continued. I’m so worried about everything, it’s definitely having a negative effect on my mental health.
  • Thank you for your comment. Comments are moderated before being published.
    Mykonos · 5 months ago
    The system, with particular regard to PIP is in chaos.

    After being “invited” to renew my claim (very early - February 2021) it was then refused quickly and benefit immediately terminated after the assessment which eventually took place mid-September 2021.

    BTW - I received not one but two differently-worded reasons for the termination, same author.

    During this time, I had received a letter extending my PIP payment until mid January but this was obviously invalid after September 2021. However, when I asked for an MR and received the reply, it was claimed that I had been in receipt of PIP until January 2022 - clearly incorrect. This makes it very apparent that nobody in this system properly reads what anyone else has written. Pointless and unfit for purpose.
  • Thank you for your comment. Comments are moderated before being published.
    Niclou · 5 months ago
    I sent my renewal back in May 2021 and my PIP runs out early March 2022. I have on numerous occasions contacted them to check the status of the renewal and update them with additional information as my conditions have got a lot worse, I was told each time it’s with a decision maker and they don’t know how long it will take for them to make there decisions so I will need to wait because new claims are a priority.

    It is so stressful and it certainly doesn’t help when you have sever mental health. Do they honestly understand how not knowing what his going to happen to their payments is helpful in any way, obviously not, if only they understood as it’s the not knowing is the worse thing.
  • Thank you for your comment. Comments are moderated before being published.
    Linda pearson · 5 months ago
    My brother is still waiting for a decision on renewal of his PIP claim having sent the forms in last June and we have not been told if his money is going to stop. HOWEVER his ESA is going to be considerably reduced because they are removing his disability premium because they have had no decision on his PIP. PIP have given no indication of when his decision will be made and ESA are not interested,just that he will lose his money. Feel completely helpless.
  • Thank you for your comment. Comments are moderated before being published.
    queenmalka · 5 months ago
    no wonder there are still people on DLA indefinite awards waiting for the dreaded letter to claim PIP!
  • Thank you for your comment. Comments are moderated before being published.
    Speedy101 · 5 months ago
    Check your letters! I got one which extended my award to Nov 2022. Got my PIP renewal forms and sent them back Jan this year. Note the DWP are treating all dated awards by tribunal as finite! Apparently whilst a decision made by them can be varied a tribunal decision can not!

    I got awarded daily living after a 0 points initial award and Mandy letter was accepted by the DWP. So with the current COVID cluster **** we're in a 2 tier system; DWP awards being auto extended whilst Tribunal awards are not!
  • Thank you for your comment. Comments are moderated before being published.
    Steve · 5 months ago
    My wife has also been waiting , end date was supposed be feb 2022 now , i phoned and they said it will continue till a decision is reached but shes still waiting for a assessment, not much has changed and the anxiety it is causing her is awful, we don't know if payment will stop at any point and then if it does for some reason like they refuse the claim and we have to fight on appeal i suspect she wont get any money.. all this with rise of cost of living energy prices going up its disgusting and shocking but not at all surprising. I hope you get answers from the DWP, some of the cases like my wifes should just be renewed if nothing has changed it would ease up the assessment phase and help those who have had changes and should be receiving more money.
  • Thank you for your comment. Comments are moderated before being published.
    Petunia · 5 months ago
    I needed new award letter to get my Blue badge. Dwp said they had written and told me about extending award to March 23 but I had never received a letter. Asked them for a copy, I’m still waiting!!
    • Thank you for your comment. Comments are moderated before being published.
      Vicky · 5 months ago
      @Petunia I had a similar problem. When my carer chased them up, the DWP told her that I should apply to renew my Blue Badge, even though I don't have a new award letter, and "tell them that they haven't assessed my renewal claim, but it will be OK for them to issue me with a Blue Badge". That's just impossible on the Blue Badge on-line application! I'm sure the DWP person knew that, but wanted to get my carer off the phone. Infuriating! We have Blue Badges because we need them, so this has a real impact on our lives!
  • Thank you for your comment. Comments are moderated before being published.
    Diane · 5 months ago
    I've had the opposite problem, I'm on higher rate care & standard mobility which I got via tribunal whi extended my award until October 2022. It was further extended until July 2023 because of Covid. Yet I was suddenly given a telephone assessment with only 3 weeks warning and no communication from DWP.
  • Thank you for your comment. Comments are moderated before being published.
    Elaine · 5 months ago
    It's a bit telling when DWP is issuing AR1 questionnaire 12 months before expiry date, when they can't begin to process the ones submitted over 6 months ago!
    • Thank you for your comment. Comments are moderated before being published.
      MrFibro · 5 months ago
      @Elaine Hi Elaine,

      all i can say is EXACTLY i don't make any sense at all.

      Roll on the next GE so i can vote these muppets with no brains or empathy out of office. But which muppets will carry the can afterwards lol.

      regards.
  • Thank you for your comment. Comments are moderated before being published.
    Frank · 5 months ago
    One of the knock on effect's of this situation is that we are being drip fed P.I.P on a monthly basis, but do not have an award. No award letter means my blue badge cannot be renewed. This severely impact's on my mobility.
  • Thank you for your comment. Comments are moderated before being published.
    Jane Mallin · 5 months ago
    I received a letter around the time my claim was supposed to be reviewed. Instead, I was told the claim would go on longer and I'd hear back in due course.
    My PIP review form arrived a couple of weeks ago & I'll send it back this week.
    I think I'm in the minority here - I was glad of the extra time because my meds had caused a life-threatening disease and I was struggling to cope with that.
    I suppose I should've told the DWP immediately but I was honestly too overwhelmed by almost dying of a newly diagnosed illness! It took me a while to come to terms with it.
    I hope this new disease will encourage them to give me a longer award period, e.g. 5-10 years rather than just 2 years. They probably won't, but it's a nice dream!
  • Thank you for your comment. Comments are moderated before being published.
    Jakki · 5 months ago
    I too have been waiting since june of last year for a decision on my renewal....the most stressful time is checking my bank to see if I've been paid as you always receive the letter after theyve stopped your money.....the disabled really are hated by the system arnt they!
  • Thank you for your comment. Comments are moderated before being published.
    Wendy · 5 months ago
    My renewal was due January 2022 my forms went back before the new year & I have a new health condition that I added to the form.
    Still not got a date when it will expire & I need this proof for my blue badge renewal. As I could only get a blue badge for 11 months last year, due to pip running out January 2022. It's pure madness
    • Thank you for your comment. Comments are moderated before being published.
      susan · 3 months ago
      @Wendy  I am a prisoner in my own home can not get my blue badge renewed due to not having an updated pip entitlement its disgusting and sickening because i can only manage to walk  about 5 metres as its too painful and exhausting hope they can sleep at night i know i carnt for worrying about this
    • Thank you for your comment. Comments are moderated before being published.
      Amanda L · 5 months ago
      @Wendy Exactly the same here. I’ve no idea what will happen about my blue badge, as it only runs until March.
    • Thank you for your comment. Comments are moderated before being published.
      LilaKitten · 5 months ago
      @Wendy Hi Wendy. With regards to your blue badge renewal, get in touch with your local Council & ask them to send their application form (I downloaded mine, but each council is slightly different). You only need your PIP (12 points minimum) mobility award for an AUTOMATIC acceptance, BUT you can bypass this step & apply for a 3 year Blue Badge in your own right.

      My mother is 85, ineligible for PIP, but was granted a Blue Badge after completing every question on her Council's application form in detail.

      I am under a different Council, but whilst I was waiting for my delayed PIP decision I applied successfully for my Blue Badge after completion of their application form (& subsequent confirmation of my answers via a telephone consultation).

      Some people are fortunate enough to be financially secure & have never needed to apply for the financial support of PIP, but nevertheless can apply successfully for a Blue Badge.

      Do it today! Add a note (if you wish) that you fulfil the criteria for the enhanced mobility component of PIP but your DWP review has been delayed, & your problems are ongoing & unlikely to improve. Just be truthful & you should be fine.

      Blue Badge applications/renewals are certainly much simpler with a concurrent award of PIP Enhanced Mobility Component, but it is not essential.

      All the best, & I hope you find my comments reassuring & you get the confidence to successfully reapply for a Blue Badge.

      Lilakitten🐾
  • Thank you for your comment. Comments are moderated before being published.
    MrFibro · 5 months ago
    I'm in that boat too. Pip ENDs in march this year, I phoned up lady at dwp a few weeks back for an update on my pip re-newal (review) she said on the phone, pip will continue even if a decision has not yet been made. I smell a rat ! how can we have any faith or trust in them at all!
    • Thank you for your comment. Comments are moderated before being published.
      Allan · 2 months ago
      @Cat Allan 
                PIP runs out first week in July , still no response .
    • Thank you for your comment. Comments are moderated before being published.
      Cat · 5 months ago
      @MrFibro Why is AA paid for care only and not for care and mobility ?

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