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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    Hayley baker · 1 years ago
    My renewal was sent back on the 22nd August 2021 and I'm still awaiting a decision. I ring all the time and get told they have not forgotten me but I am in a queue and to leave it with them. I've been waiting 15 months now! In that time I've had another joint replacement and my condition has got worse but they don't want to know! 
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    Tony · 1 years ago
    I was On esa for 10 year made to do yearly assessment.i should have been offered pip .who do I speak to?

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      Julie · 1 years ago
      @Tony You have to apply yourself for pip it not offered. 
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    Leonie whyne · 1 years ago
    It crazy because mine is the exact opposite I had my review on the 5th of October got a decision on the 19th. Which is ridiculous. They have stop my award completely even though I have not got any better.
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    david · 1 years ago
    Got the covid extinction and it messed my mobility up, Cant renew my car till 20/10 and they won't let you renew with mobility unless you have 12 months left, I apparently have 10 months left and it could take 20 weeks for an answer, I will now be without a car,.... even if it is done in 3 months, it takes time to order due to shortages..... now what do i do
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      Fiona g · 1 years ago
      @david Hi, contact mobility about extending lease.. explain situation they extended mine as I’m still waiting on review decision
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    May · 1 years ago
    I just got a letter today from them saying they want to end it because I failed to complete and return the form but I had never received the form in the first place. Like many others it was extended due to the pandemic but they did not give me any chance to reapply before they made their decision. 
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    Mrs K Strange · 1 years ago
    I'm sure that my pip is due to end but I have had no renewal pack. My decision was made thru' appeal a few years ago. Will my pip suddenly stop?
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      Julie · 1 years ago
      @Mrs K Strange Call and request the form don’t wait. 
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      Leonie whyne · 1 years ago
      @Doglover2 I did not get this what form what it.
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      Doglover2 · 1 years ago
      @Mrs K Strange @Mrs K Strange
      You need to phone them. Use to be if you won via tribunal and did not make a fresh claim your pip ended, I won twice at tribunal, first time when the award ended I had to fill in a form as if it was a first claim, after second award ended they sent me a review form,six months on still waiting and my pip ends next week. 
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    Doglover2 · 1 years ago
    Review form  sent back  six months ago,Looks like my pip will be running out and I won't be getting an extension on my claim,previously won at tribual. Twice!.it ends early oct, not a word about my assessment,  I asked point blank on the phone when I was trying to chase it up if I will get one and she wouldn't answer, said phone back in Sept, yeah,so she won't have to tell me no and some other poor s*d will.
    I detest all this, I went from indefinite dla to zero points for pip, first try,and then 2points second try,
    So much for trying to save cash by "Getting it right first time". 
    Even emailed my mp weeks ago, didn't reply.
    I've never had one single oerson help me through any of this,it's all trial and error and a learning curve.
    Didn't  even have a representative at the tribunals. Oh well,we fight on and on and on and on...........
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    Angel · 1 years ago
    I filled my renewal form and sent it back. I received a text to say they had received my form . Had a letter last week 7/6/22 stating I had not returned my form and my pip would stop the end of this month. I have tried ringing every day for over a week but just on hold for sometimes an hour the the call get cut off, this is happening everyday , there is no email address to contact them and the letters I have sent have not been answered.
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    Cheryl · 1 years ago
    I sent in my review form on the 17/1/22 they received it on the 18/1/22 and was told it would be 8 weeks. I phoned back again end of April and was told I’m really sorry il send it asap to the adjudication team it should have been done weeks ago. Now it’s June and I’ve still heard nothing, I’m same as the rest of people scared incase one day it’s not In bank. I told them on my review that my healths got worse so I thought I’d definitely know by now.
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    Brian · 1 years ago
    in 2020 my pip was meant to end in December they sent a letter stating that it was being extended to June 2021, I have a blue badge and that was due to end in the December as well so I went to my county council and showed them the letter from the PIP and asked them as the pip has been extended would the letter be acceptable for when renewing my blue badge. I was told that it had to be as award notice not just a letter. I contacted the PIP office and told them what I had been told by the county council they said they would send it out to me, but they sent me a claim form to fill in which I  did then the next thing I get is that they had processed my claim and had stopped the current claim and had awarded a new claim with a new start date I contacted them as they had not included the certificate of entitlement which is what I needed for my blue badge as well as the road tax, I now am in a battle with them via a tribunal and so far it has taken 2 years and 3 adjournments as the PIP state the reason for bringing it forward was due to new medical evidence from the healthcare professional examination which was supposedly done in the August of 2020 ut there was no medical and now the tribunal have asked them to produce the report and be present at the next hearing to answer why they have come to the decision they have. the PIP still have not produced the evidence of the medical that they stated they used to alter the date of the award. also they took 2 weeks to process the claim which according to them the reason for the extension to the June 2021 was due to lack of staff due to the Covid 19 and the restrictions it had caused. 
    so if they seem to do things without actually doing them or fail to notify you then seek some legal advice from the CAB or any other advice/help centres as it could be that the PIP are trying to cut back on the back log due to the epidemic and just use the old information and state that there is new evidence or that things have not affected your scoring.     
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    Scott · 1 years ago
    I've literally just informed them my conditions got worse and they've took my pip away from me ...I now I have to get rid of my emotional support dog I can't afford to see my son and I may aswell top myself ....
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      Janoula · 1 years ago
      @Scott the system is fixed against genuine claimants. Only those benefits savvy get through in my opinion. How my scoliosis diagnosed at 23 getting worse year on year can suddenly improve at 66 ? I have been waiting 2 months since renewal telephone call, now they say all information received to make a decision. Well make it then ! I know whats going to happen, but I will fight this. Just because they PAY a GP 33.50 to complete a form, and they complete it in minimal form omitting things they themselves diagnosed, doesn't mean I should not get it renewed. ITs ridiculous
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    Chez · 1 years ago
    I've told the pip about my change of need as my condition has got worst ,does anyone know when they will get back to me as it's been over a month that I've given them the form back I've got a lot of anxiety surrounding this 
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    Leonard · 1 years ago
    I am desperately getting more and more anxious at the thought of not getting my PIP renewed. 

    I recieved my review form to be sent back by 30th April 2022 with a copy of my medical records which was being delayed by my GP Surgery because of short staff issues and after weeks of chasing that up I knew I would be late in returning my PIP review.
    So I tried calling the PIP line for days on end holding on from 45 minutes to over an hour and a half.
    I eventually sent all the forms off a few days after the due date and kept trying to call PIP but to no avail until the 12th May. To which point I was told my PIP has been stopped and I would have to call back in 8 days to speak to a case manager and explain...again! I asked if notes can be made to explain why and was told NO. I would have to call back, I even said I have my phone record of all the attempts made to call before the cut off date but was still told to call back. 
    I am now struggling as that topped up my bills and food shopping money. So no PIP payment now means I am short on bill payments and no money for food shopping. I am so desperate and going absolutely out of my mind I don't know what's the point in living.
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      Tracey · 1 years ago
      @Leonard I sent my renewal form in Jan 22 still waiting for assessment now August 22 it's ridicules my condition has got worse but this waiting then no backpack isn't fair like the people they know will get more money off them they leave waiting longer so they don't have to pay us 
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    paul cattaneo · 1 years ago
    i put my PIP renewal in  last July as i was told to get it in by 1st August still waiting for a reply and when i ring up i get a different answer every time.With out i am unable to renewal my blue badge and my bus pass
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      Andrea · 1 years ago
      @paul cattaneo In my council they will assess you for your blue badge with evidence alone. You do automatically qualify with PIP points but I'm in the same situation and they told me to send me evidence of my disability and why I need it and that will be enough. Hopefully your council is the same! 
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    Carol Ferguson · 1 years ago
    I put my pip renewal form in December 2021 I called in April was told call back May when I called back the man on the phone told me to call back weekly. They took my mobility off me 3/4 years ago but I am going to fight to get it back I have copd and bi polar with other problems I need a decision so I can take it further this is a disgraceful carry on. 
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    Mozoomder · 1 years ago
    Hi, I am the appointee for daughter PIP, I sent her PIP review form back to them in January 2022, since then I am still waiting…… My mother in USA became very unwell, my other family members was requesting me to visit her, but I could not visit her incase DWP contact me for more information about my daughter PIP review claim, I very sorry to say my mother has died recently. I am feeling very sad for that I couldn’t see or visit my mother for last time. Does the department understand that what I lost, is my god will forgive me for this? Sorry I can’t write anymore….
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    Noor · 1 years ago
    I have son with Autism, I look after him, I sent his review form beginning of January 2022 still not receiving any reply, actually, they don’t understand Autism is a life long disability, it’s can affect someone different way, they don’t understand mental health issues, because they can’t feel and sometimes it’s not visible. Thanks 
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      Nazim · 1 years ago
      @Noor The decision maker or the department don’t cares about the stress or extra pressure they put on people with mental health, because they are not the one of them or related to anyone with mental health issues. They just don’t care anyone, they think it’s their job, it’s not a matter to them who died or dies. We are the peoples we should be human. I feel very sad for that they aren’t helpful. They should keep people updating in every 4 weeks if they need more time to make the decision. Thanks 
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    Muhammed · 1 years ago
    I am waiting for review decision from January 2022, still no reply, this not acceptable for people with mental health disability. 
    • Thank you for your comment. Comments are moderated before being published.
      Loulou · 1 years ago
      @Muhammed I've been waiting since January got a letter from pip about reviewing my claim I sent it back saying that my mobility was worse due to getting arthritis in both needs since my last review, all I've had since then is a a letter telling me that pip payments are going up with inflation it was just a single sheet of paper, don't know what to make of it 
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      Muhammed · 1 years ago
      @Muhammed They don’t understand mental health issues because they can’t see and feel. 
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    Kaz · 1 years ago
    I have long term health issues I finally was awared the low rate living allowance Pip in 2016 and lost my job in 2017 due to Time off cause of my condition was awared low rate mobility 
    and living allowance in 2018 didn’t have a review date in line … it’s only when I couldn’t renew my blue badge for more then 6 months at a time they realised it need a review although I had done a change of health that’s worsened through covid times was told this wasn’t necessary they lost the form .. I called again last September 2021 and they agreed they lost the form and yes needed a to have a review on my condition sent for back with all evidence and medication change … 
    back in October 2021 it’s taken 7 months to have a assessment that was done by phone the assessor rand 2 hours late … then rushed my assessment and never read my report back which the should …
    I ask she said would get it through the post … never received had to chase it and found d out that I have scored 0 on everything but I can do anything for my self my mental health is really bad to do now this has thrown me into full anxiety attack flare up of my conditions and left me feeling alone… still no report !! Can’t do nothing about it till receive letter .. 
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    Anna · 1 years ago
    Had a letter last year extending my award until March 2023. Now I’ve received a letter to say my claim being reviewed, so I rang …. “Extension letter doesn’t count now, we can review at any time” My original award granted in NI, I’m now in Scotland. Covid means I’ve rarely seen a GP let alone a Consultant and have no evidence to present and no way of getting it! I have 2 weeks until deadline. PIP is about to be transferred to Scotgov …. I’m totally confused and in limbo and DWP won’t answer direct question or confirm a verbally agreed extension.
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