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.
    L · 2 months ago
    It's just taken a year after they sent renewal form for them to give me an appointment for phone assessment which I don't understand. I said I was in more pain, but they were already giving me highest amount so why the hell are they assessing me, can only be to try and reduce it. I've spent a year being anxious and now anxious about having a phone call, where they can deny what is said or lie. A phone call should not be allowed. There should be a paper trail.
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    Antoinette · 5 months ago
    We sent our pip renewal in
    March this year we had a letter extending it until nov 2024 but our mobility car is due for renewal in march what’s going to happen 
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      Antoinette · 4 months ago
      @Antoinette That’s exactly what’s happening to us it very worrying and doesn’t help with my partners anxiety at all 
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    Anne · 11 months ago
    My son has had his renewal decision through (submitted back in Sept 2021), and has had his award increased. This is a relief and a fair assessment of his needs. I received a phone call from the assessor advising that there would be a lump sum in backdated payments issued, but it has now been over 6 weeks and nothing has appeared. I rang 2 weeks ago, to be told that everything appeared to have been done correctly, but as it's a large sum it has to be checked before being issued and I would hear in a couple of days. Still nothing... Does anyone know what the process for this is, and how long it tends to take?
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      Kelly · 3 months ago
      @Anne Did u get the back payment in the end why did it take so long if so as I am in same position 
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    Bill · 11 months ago
    DWP wrote to me saying my PIP has ended because I didn't submit my review in time. Thing is, they never contacted me once regarding a review. It's the first correspondence I've received in a long time.

    I've written to DWP explaining they have made an administrative error and asked them to fix it, but I can't imagine they will get back to me soon. Now I have to pay for the travel to my hospital appointments on a credit card which I will no longer be able to pay off without picking up more shifts. The irony being that this will make my disability worse due to less rest and more work related stress. Thank you DWP.
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    Natalie · 1 years ago
    I received my pip renewal answer today. They have taken it all off me. My higher rate for care which has gotten worse as well as complete non consideration of my mobility due to osteoarthritis and fibromyalgia. I have mental health issues and feel I have been completely ignored especially during my face to face assessment. I have waited well over 12 months for this reply and now they have taken it all from me.I am going to appeal but I’m not confident any advice would be helpful.Thank you in advance if anyone has any suggestions.
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    Janoula · 1 years ago
    Seen letter sent to GP re award of PIP, when in fact is a renewal. Asking doctor about ability to cook, bathe, etc when I have never been to doctor with that information, can't get an appointment for a new condition ! GP has replied very sparsely, named only 2 conditions out of 5 that affect my abilities. Didn't put all medications down either. Seems like a conspiracy to stop genuine claimants. Would I have given up my job at 63 knowing I had to wait 3 yrs til state pension if I really could still do the job? No, but even my boss knew I was not able to do my job to a degree of acceptability any more. But DWP PIP and GP seems to not want all information. GP didn't even put down appointments where I had asked about another condition that I have to PUT UP WITH, didn't put down her diagnoses of arthritis even? I sent all consultant and GP letters with my renewal form, not forged letters, so why this hassle. I now feel I am going to be declined when in fact my main condition of scoliosis can only and has got worse year on year. If you don't know how to screw the system, you are screwed basically it seems. Scoliosis diagnosed at 24, didn't claim anything til 55+ worked since 16, but now being treated as a scrounger. Hateful system.
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    C.Waite · 1 years ago
    Waited 18 months after I sent my PIP review forms in  to have a telephone assessment.My circumstances havent changed.I am disabled,use crutches,take a lot of meds for mental health and pain meds.I  am awaiting ankle replacement and suffer CPTSD,have already had 6 ops. No movement or feeling in foot. Today I received my letter.10 points for mobility 6 for care.Now only entitled to just over a 100 a month from just under 500 for the last 6 years. Apparently from a phone call they could tell I sounded okay and took no notice or inputted anything I told her.Basically I am cured now then?Destroy peoples lives these telephone assessments
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    Stuart may · 1 years ago
    I am currently due for a review on my PIP application I rang them a week ago to update my contact number and ask them if I was due for a renewal which they said I was they told me they had sent forms out on the 9th December 2022 but I never received these otherwise wouldn’t of asked them when I rang I was told new ones would be sent out but still haven’t received them and had a text this morning about a telephone assessment on the 17/02/2023 my stress levels are through the roof as I haven’t received any forms to fill in and I now don’t have any support as I lost my support worker as she was only a housing support worker so I’m surely going to fail this assessment as they will think I didn’t bother to send the forms back but I never received them in the first place. 
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    Liz · 1 years ago
    My pip extenstion is up at end of january .on the letter it states not to contact them they will contact me which i havent heard yet and nothing from motability about my car  very anxious 
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    Jane williams · 1 years ago
    I had renwel pip form Feb 2022 filled out form with lady at Greenwich assoc for disabled my pip is due to end January not heard any thing beside my self with anxiety have a brain fistula so need help more than ever can’t renew disabled badge or taxi card with council just in terrible state this is making my condition worse 
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    Princess · 1 years ago
    I had my renewal pip form from the beginning of July 22 and ve received two texts saying they have my form and that they will be in touch and ve been waiting nearly 26 weeks ...
    I suffer with mental illness problems like depression and anxiety and panic attacks and I don't really go out because of the stress of being around people and I have severa joint pain and arthritis in my feet which is really painful and Im in my bed most of the time ...
    My reward ends the 1st June 23 which means my last award payment is the last week of may 23...
    I have been in touch with my local MP and she wrote back with a letter from pip saying they have my form but they ain't had chance to review it in which that doesn't help either 
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    Socrates · 1 years ago
    I received a letter saying that PIP “looked into my award” and they decided to continue paying me for the next 5 years, based on what I told them in my last review. However, today, I was due to be paid and I haven’t received anything! I have been trying to call them (called more than 10 times!) and every time, the call is terminated after I spend about 5 minutes answering questions about my identity! No reason, no explanation, I just get a busy signal and the phone hangs up after I answer the questions! What’s going on!? I have checked their website on the DWP website for any indication that they are having problems today, but nothing! 
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    Darren · 1 years ago
    Pip said this to me We have received your PIP review form. We may contact you for more information or you may need an assessment with a health professional before we make our decision. We will contact you again if you do. You will continue to get PIP while your award is being reviewed. You only need to contact us if your circumstances change. But not been paid from them today is my payment date off them but nothing has gone into my bank
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    Louise · 1 years ago
    I completed my PIP review in March 2022. Heard nothing until Sept 22 when someone from a PIP consultation centre called me for further information, Still heard nothing, Then I received a text this morning (14 Nov 22) saying they'll be progressing my review as soon as they can and I may still need an assessment. They are still paying the PIP but the wait is causing huge anxiety for me. 

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      Sean folly · 1 years ago
      @Louise Hi there lousie I have a learning disability and I been told lost of things that are wrong and I keep ringing them up but I get no response from them and it’s hard work to get them to listen to us and I just found out I got to have a hearing aids in both ears now and I put in a new claim in and I still waiting as I been told the doctors thay wanted to talk about my disability but thay did not and I kept telling pip no one listen to me and I get stressed out all the time 
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    DAVID COTTERILL-DREW · 1 years ago
    I sent my review back in March 2022, my pip will end next month. However, I have received text messages telling me that award will continue until review is complete. It is right that they should prioritise new claims. The delays are considerable and extra resources should be supplied by government. 
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    H · 1 years ago
    Whilst your waiting for the review decision and your still getting paid if you have your award stopped at the review descion do you have to pay all the money back they have paid you in the time it's taken to make there decision as I can see from the comments people have been waiting nearly 12 months will you have to pay it all back? 
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      Matthew · 1 years ago
      @Bex i have been on PIP since 2006 had 4 assessments to renew and in that time i failed all 4 so i had to go to Court 4 times,  each and every time and thank god the Judge did awarded my PIP, the system is FIXED, good advice you say by saying dont give up.
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      Bex · 1 years ago
      @H If refused always appeal . Yes appeal/tribunal is scary . But if you’ve had if before and still need it don’t give up
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    R horlock · 1 years ago
    I haven’t heard anything from pip sent forms back dec 2021 rang esa they told me pip have extended for a year because of covid then suddenly my esa has been reduced I’m assuming this is to do with the pip chaos 
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    T.W · 1 years ago
    PIP renewal forms received aug 2021 sent off and received by DWP in 2nd sept 2021 its now November 2022 and every now and again I get a text stating they will be progressing as soon as they can and I may need an assessment they have more evidence sent to them than I've ever sent. I suffer anxiety and depression on top of physical health problems and the wait it's causing my anxiety to get worse as I have no award letter to show anyone when needed. It really needs sorting.
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    A · 1 years ago
    My renewal was sent in deadline March 26th 2022 we are now in nov 2022 I'm still waiting can't apply for blue badge no prove of getting pip now spoke to blue badge who advised I have so not getting pip so I'm now without a blue badge still waiting on pipterrible how treated had nothing in writing had two text messages that's it 
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      Julie Jones · 1 years ago
      @Paul You can get your blue badge by not filling out you get pip give them other evidence I did this for my husband his pip is being reviewed since last April blue badge ran out February sent in evidence for his badge for 3 years hope this helps 
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      Bex · 1 years ago
      @Paul My badge ran out and pip extended blue badge are aware of delays apply anyway worded case you will be assessed which is what happened to me then I got my badge 
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      Paul · 1 years ago
      @A same here iam trapped due to my blue badge expiery
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    Becky · 1 years ago
    My sons dla as ended they havent renewed or looked at it yet some his payments have now stopped
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