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.
    Sweets · 3 months ago
    I received and returned a light touch review form in July 2023, I haven’t had a response yet and my blue badge is about to expire, any idea how long the backlog is? Seven months seems a bit excessive!
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      C · 2 months ago
      @Sweets Returned my review form over 12 months ago and haven't had a response yet. You might have a long wait ahead of you, unfortunately.
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    mary · 3 months ago
    hi, Just phoned for a review form and swore after first time 3 years ago i wouldn't do it again and i just wish someone would write it out for me. Can I type up an additional sheet as my hands shake and its easier to type up. cheers
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    CC · 4 months ago
    hi all, I just received my review form on 23 dec..nice timing, when my renewal is not due til end Mar 24..have already asked for extention to return as it was 9 Jan, however given I have had 7 years of loosing and fighting for PIP after being awarded in 2014, stopped in 2016, tribunal from 2016-2022, and awarded again 2021-2024 I am terrified of putting in any changes (which are only increases in need) however one of the main reasons I got kicked off all that time was simply being discharged by the local CMHT which was due to NHS cuts not needs and this has happened again recently due to moving area. I cannot go through another reduction/tribunal - I just haven't got it in me. Can anyone advise is the telephone/medical assessment after filling it in going to happen regardless? I'm also not sure which form I've received but think its the shorter one.
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    Didi · 5 months ago
    I am on the highest for both PIP parts and my award is ongoing but just received an AR1 not AR2 form. So it’s not working as they promised 
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    Ms · 6 months ago
    Throw any extra evidence you can at them. No change is ok once or twice but in their opinion its not enough sometimes. Best of luck
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    Sarah · 6 months ago
    Hi I just got a text about my review and expect the form to arrive any day. I have complex issues which have slightly worsened since my award in 2020. I am already on max points so should I just say no change or should I detail the worsening problems, and if so should I then submit evidence such as doctors' letters?? #stressed!!! 
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      Lee · 5 months ago
      @Sarah I wouldn’t say no change if you’ve got worse and have doctors letters to back it up attach them to your review letter I’m just waiting on my review letter to come in the post I’m diabetic my medication has been put up twice since my initial pip claim so I’ll be putting all that in please don’t think should I just submit everything that’s changed about your self all the best
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    Ms · 6 months ago
    After going through 3 triunals in the past 26 years, numerous MR, I had a telephone assessment 8 weeks ago. After 4 weeks they stopped my pip, they gave 4 points for personal care. Tribunal gave me 10 points 6 years ago and i got 11 off a case worker 3 years ago. I have amputation of fingers so therefore my condition and help i need will never change. Sent an MR off month ago expecting to have to go through another tribunal, this morning, completely out of the blue, a nice lady from dwprand and asked me a couple of questios, have i been out of the country in the last 12 months and if my bank account details are still the same. She then told me i got my pip back. Fight it all the way people. Its usually worth it in the end. Dont give up
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    Jacqui Adams · 6 months ago
    I was on the phone for over an hour to DWP PIP today, on behalf of a 68 year old alcoholic. They stopped his PIP 2 months ago, no warning, no letter. Apparently the pension people have only just realised that I've been phoning on his behalf even though I have LPA finance and have registered this with the DWP and have acted on his behalf for over a year. Normally they send an agent out to interview me. Why ? I asked. It's legally binding, registered, they have the access code. And I was told, his PIP has to be paid into a seperate account other than his bank account. I've never heard such a load of rubbish. When I pointed out just how long I've had the LPA, how many interactions I've had with the DWP, and that stopping a benefit without warning  sent him into OD, and that he is vulnerable, she couldn't have cared less. By the way they stopped his pension credit last month, no reason given, but I'm guessing this was why. I've got both reinstated now. What a shambles 
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    C · 6 months ago
    Hi I got the 6 page review in Dec 2023 sent it back in with all health issues ongoing no changes. I was then assessed on phone in Sept 2023 for over an hour n half felt like a full assessment asking same question over again and got my report I've gone from enhanced care and mobility to enhanced care and standard mobility even though I sent in Dr's letter stating I had fibromyalgia copd anxiety and couldn't walk any further from 1 metre to  10 metres. But my report states 20 to 50 metres. She even asked how long I had my mobility car for. I said a year today when she called me. I've asked for a mandatory reconsideration and resent the Dr's letter in saying it contradicts the length I can walk before it causes me pain breathlessness  and I have to stop. How long before I have to send my car back? Does anyone know please. I'm so upset my nearest family is 6 and 12 miles away and only 1 drives who lives 12 miles away how I'm supposed to get to Dr's etc I don't know as the nearest bus stop is at least 100metres away. Any advise will be appreciated. 
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    Helen · 7 months ago
    I just ticked nothing has changed on my form , that’s what I was to do, now I’m panicking.
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    Bernard CHAISTY · 7 months ago
    I got in touch with pip to tell them about change of address and asked for for certificate of entitlement, they sent one out but it was only till August 2024, i appealed my points for daily living, and they sent me a letter saying I have enhanced for both ongoing with no end date, now they are saying I have to apply again in six months for pip again when I will have been nearly 7 months over my pension age any help would be appreciated.
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    Sam · 7 months ago
    I have just had a light touch review after being on pip for 5years I filled in my new form posted I back 7 working days later received a text to day they had received my paperwork and 2 days later I received a notification that my review had taken place and I would receive my paperwork within 2weeks on the outcome of my award I must admit that this was a very easy process compared to the other occasion when I applied for pip so there is hope that things are getting better good luck to everyone else who has to go through the process 
    • Thank you for your comment. Comments are moderated before being published.
      Mary · 6 months ago
      @Sam How did things go, any word back
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      Marion · 6 months ago
      @Sam Hi Sam, when my first review for PIP comes up (sometime in 2025?) as I have it from 2019 to 2026, standard for both, is there a sample review form on B & W, or elsewhere? A very experienced man who was a carer for his wife with M.E. attended a support group I go to, he did my first PIP form. He also did my ESA a few months before, late 2018 & I was over the moon I got kept in support group without another WCA. But sadly, he passed away in summer 2022 & hardly any places to help in Norwich, with varied experience.

      I’m concerned on 2 fronts, my condition has worsened, plus diagnosed in 2022 with a pre cancer rare myeloma (no way am I risking telling them yet) need to know what evidence I would need to provide for this? Plus, as a woman age 62, done out of pension until 2028, I want to continue getting PIP, so I keep it after pension age. Any advice would be gratefully received.
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    Ms · 7 months ago
    Tiptoe, you should ring again. You have to persevere with the dwp. You dont get anything for nothing. You have to work hard for your money
    • Thank you for your comment. Comments are moderated before being published.
      Ms · 7 months ago
      @Tiptoe Oh thats great news. You have to fight these people but at least it was all worth it in the end. No more assessments, just an easy form to fill in which is basically a yes/no. I had my phone assessment 2 weeks ago. Could be waiting weeks yet🤞
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      Tiptoe · 7 months ago
      @Ms Hello Ms, after five phone calls to DWP, and being told on more than one occasion to complete the full 44 page PIP paperwork I was eventually transferred to a DWP caseworker..
      And the good news, I had a result today!
      It did take the caseworker 24 hours to get back to me but the good news is, over the phone DWP has extended my full PIP for mobility and Care until 2028 and she said that in 2028 I will get a light touch review..
      I also got an apology saying it was a glitch in the IT system. Probably going back to Covid times? 
      Thank you Ms for your excellent advice and giving me the strength and encouragement to fight my corner….
      Bless 🙏


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    Ms · 7 months ago
    You do not need an assessment. You should just have to fill in the light touch review form which is much simpler and quicker than the normal form. Im not at that stage but i have downloaded the form to look at and it will probably take about 5-10 mins to fill in
    • Thank you for your comment. Comments are moderated before being published.
      Tiptoe · 7 months ago
      @Ms Thank Ms, that's really kind of you to get back to me with some additional advice.
      The PIP paperwork that I was sent was dated the 1st of September and I only received it on the 15th of September and its had to be returned by the 1st of October...2 weeks notice to complete a full 44 page assessment, when hopefully I should only be on a light touch review due to my age of 69..
      Take care and I will let you know the outcome of my next lengthy conversation with DWP
  • Thank you for your comment. Comments are moderated before being published.
    Emj · 7 months ago
    Hello does anyone know what the procedure is like for those who have been claiming pip for 10 years. Do they still do phone or video calls for reviews?
  • Thank you for your comment. Comments are moderated before being published.
    Ms · 8 months ago
    I would ring them on monday and say why are you sending me a 44 page review form when im 69 years of age. You should have a light touch review
    • Thank you for your comment. Comments are moderated before being published.
      Tiptoe · 7 months ago
      @Ms Thanks Ms for the much appreciated reply.
      I took your advice and spent 40 minutes waiting for DWP to answer the Phone only to be told he didn't know the answer to my query and continue with the 44 page paperwork!
      When I queried the fact that I was 69 and I've been on continuing DLA for 30 years and PIP for the last five years for enhanced care and mobility he said he would transfer you to somebody else who can answer my question and after a 10 minute wait the line went dead!
      Talk about being stressful and I still don't know what to do
  • Thank you for your comment. Comments are moderated before being published.
    Tiptoe · 8 months ago
    Good afternoon B&W members.
    Can anybody please guide me with my query…
    I am 69 and I've been on DLA and PIP for 30 years for care and full mobility [I was reassessed in 2018 after a face to face meeting at my home for the new PIP award and my care element was increased to high]
    I had a random letter about 3 weeks ago DWP asking me to ring DWP.
    The lady on the phone was very vague but asked me if I wanted to renew my PIP [it expires in February 2024] All she wanted to know was am I UK citizen [yes] has my condition changed since my last review [NO] and the name of my GP and Health centre.
    Today I've just received a full 44 page PIP assessment form.
    So I'm slightly confused with the conversation thread on the site about the AR2 light touch review?
    Any advice much appreciated
  • Thank you for your comment. Comments are moderated before being published.
    Barbara · 8 months ago
    I became a pensioner in Jan 23. I had both high parts of pip. Now dwp has used a review form from 2 years ago with just an update of additional conditions. And now have decreased the care to low. I had got a letter after the review form to say my award was extended to October but this has been changed aswell. They have used a med exam from 2017, which I had won an appeal against! It’s a complete mess! They are doing a mandatory reconsideration but are not including the original conditions on the original claim. 
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    Adrian Marsh · 8 months ago
    I received a pip review form the other day even though it's not due to end till 24 and they said they'd extended it to 25 during lockdown. I got the form, it's one of those no changes ones. When I last had one in 2020 they took a point from me meaning I lost my mobility car, but after manual reconsideration I got it back. I suffer from bad anxiety, depression and have problems with my leg. Also have COPD and Asthma and rarely go out of the house because I get so stressed and worried about the outside world, and prefer to stay in. This means though that I have hardly any relationship with my Dr, even when I have a COPD exacerbation I can ring the surgery and get antibiotics and steroids from the receptionists. Therefore it only shows on my Drs record if I have to go in for a second lot of tablets. Therefore I'm a little worried what the Dr will say if they write to him, and I lose my award. Can anyone reassure me?
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    EJ · 8 months ago
    Has anyone had their award extended,, my dads was supposed to end today but they didn’t send a review form or anything so we called them and they said it was extended to 14 January 2025
    • Thank you for your comment. Comments are moderated before being published.
      Nickb · 8 months ago
      @EJ Yes, I got a letter yesterday from DWP saying that I am now on a light touch review without an end date.
      No forms to fill in or anything, it's such a weight off my shoulders!!