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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    Pete · 2 days ago
    Disgraceful roll on a labour government 
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    Elaine · 4 days ago
    Only a government which are millionaires would won’t a scheme like this😡 maybe another governing body need to look into and access all of their monies and what they are spending their so called hard earned cash on !! Like holidays, expenses and underhanded business deals…. And as for his comments about disabled and sick claimants are shirkers I would like to tell him that never in my life I would have ever thought that I would end up constantly unwell with health issues that can not be cured and having to live on medication for the rest of my life and that because of this I now don’t see hospital consultants and hardly get to see a GP so I feel that I will be persecuted for both ESA & Pip 
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    rookie · 4 days ago
    'sup?
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    scott speirs · 4 days ago
    absolute disgrace the tories need kicking out asap
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    Mrsvphil · 1 months ago
    I had a missed call this morning off a mobile number my number is relatively new and only a handful of people have it. I am awaiting a hearing date for tribunal could pip still decide to award me and if so could it be them that have tried ro call me?
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    Val Peaco k · 3 months ago
    I was awarded pip indefinitely. I just happened to mention during the assessment that I had had an assessment that morning for ‘Access to Work’. The pip assessment was more or less finished once they’d heard this. If you work you really need Access to Work in to assess what can be adjusted in your place of work to ensure you can continue to work. I had adjustments made and have continued working for five years albeit having dropped a day. Access to work really are understanding and are very helpful with understanding what adjustments need to be made that you might not have considered yourself. Good luck everyone who applies for any benefits.
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      Angela · 16 days ago
      @Val Peaco k Can you explain more about access to work please? Thanks
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      Deborah · 3 months ago
      @Val Peaco k Hello Val, can you please tell me where I would find information on Access to work. What is it and where would I go for it, would it be my employer ? 
      Tia 
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    Melanie Hopkins · 5 months ago
    I recently went to a tribunal to put my case to the court on how my fm affects me .My claim was unsuccessful as I hold down a job I am a nursery nurse and I could converse quite well and I can make my own way in the bus to my place of work.The fact that Im in constant pain and have had to have changes made in work to support me in my role did not matter.
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      leonc1963 · 3 months ago
      @Elaine Yep Govt wants us back to work, but the DWP are working against that 
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      Elaine · 5 months ago
      @Melanie Hopkins I’m going through application process at the minute and was unsuccessful at first stage because I can hold down a job too; it’s almost as if they are encouraging us to give up work and become another statistic of the unemployed!
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    T · 6 months ago
    I have fibromyalgia and was awarded standard rate for daily living and nothing for mobility. The interview for pip was awful, and I was made to feel I like I was lying. Considering the government’s initiative to get disabled people into work, it’s ironic that I was not awarded mobility rate as I work part time and am able to drive to work! That was their grounds for not awarding me mobility component. I took it upon my self to apply for a blue badge and got this. Making a claim for pip is long, difficult and causes extreme anxiety. 
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    Judy Williamson · 6 months ago
    You mention Fibromyalgia, but not M.E/Chronic Fatigue? Why not surely these go hand in hand? It frustrates me beyond believe that M.E doesn’t get the same recognition as Fibromyalgia. 
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      Samiam · 20 days ago
      @Judy Williamson Was shocked to see no chronic pain guide, have literally watched fibro appear out of nowhere during time i have had chronic pain from complex regional pain syndrome, an easily researched condition known for over a centruy to cause severe pain.. yet i still have to prove myself every 2 or 3 yrs with ESA and this. 
       I haven't been able to work at all since early 90s but still they make me feel like a liar. I don't eat because feeding my kids with their help is too much, i shower once a week because its too painful, but i'm okay because i can adapt.!
      Why don't people with Fibro get told they can adapt to level of energy and pain when i am told to. I got stndard care, the same as a 19 yr old with ADHD socialising with his mates every weekend and at school full time. laughable really.   
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    Debbie · 6 months ago
    I have fibro and anxiety,  even though  my pip review  took over a year to happen, which caused no end of stress, I was once again awarded  low rate care only. I have a blue badge because  I can't walk far, they ignored  everything,  I couldn't even be bothered to ask for a mandatory reconsideration . The whole process is awful.  I had reports from OT and a 52 page report from the top fibro guy in the country.
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    MsBasset · 6 months ago
    I failed to get mobility this time around nothing has changed if anything is worse and I have Fibro/anxiety/osteo in most joints/autism and further health issues 
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    Tracey · 6 months ago
    Hi all, I read everyone’s posts with 100% understanding and sadness. 
    I have a phone tribunal on 2nd November and to say I am ‘terrified’ is an understatement. 
    I fight with symptoms of fibromyalgia, anxiety and depression. For years I’ve been able to push on despite high levels of pain and fatigue along with the other delights they bring. 
    In Jan 2022 I got covid. I have gone on to develop long covid which has exacerbated all previous symptoms and given me more to deal with.
    I have since been diagnosed with Rheumatoid arthritis, which I now think I’ve had for years too but put everything down to fibro, post covid asthma, chronic fatigue and I now feel I may have more mental health issues and the anxiety and depression I have are due to that. The dreaded menopause is also something I’ve finally been given treatment for. 
    The whole process of pip has, and continues to be a major strain on every aspect of my being. I am incredibly close to cancelling the tribunal as I’m not sure I can go through with it. 
    The health care assessors report was littered with manipulated inaccuracies and the dwp maintain that I am not affected on the majority of the days. This couldn’t be further away from the truth. I have to plan what I have to do in order to function and am not living… I’m literally exsisting. I can’t just do anything near to normal levels or that I would have been previously been able to do. 
    The report is full of things I simply didn’t say either. 
    I have looked at the guides and started to write more things down but when I’ve looked at my application and think about the assessment…. I have said how I am struggling but it is not being and has not been accepted, I am at a loss as to what to do.
    I also struggle to say exactly as I am due to embarrassment and feeling ashamed and failed to say somethings that I should have. My stupidity but again possibly down to mental health issues and feeling pressurised to answer things I was struggling to.
    It feels very much like I’m begging for help. After having worked in the social care field all of my working life I have helped many people. I now need some help yet can’t get it. Not that it makes any difference with what job you have had I appreciate…. It feels horrendous for everyone struggling to be heard.
    Anyone who can give me some advice would be greatly appreciated and accepted. 
    Sorry for the war and peace. 
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      Good to know !!!! · 3 months ago
      @Sarah Paul Hi everyone my advice would be when you have your assessment weather it’s a phone call or video call or f2f tell the assessor you are recording the assessment  take a friend or family to record your assessment even if the assessor tells you they will record the assessment themselves still say I will be recording for my own evidence You have the right to record your assessment please do this you will have evidence if there are lies in the report by the assessor. And you can use the recording if it goes to tribunal. Good luck everyone.
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      Sarah Paul · 4 months ago
      @Tracey I felt I had to reply to your post as my heart went ont to you! I’m in the process of my 3rd pip application. I had been on incapacity benefit and when it changed to pip I was told I was looking after 2 children and so must be ok!! If only!! 
      Mine started when I was 19, working as an nanny/playgroup leader and for 5 yrs was made to feel crazy and couldn’t understand why I couldn’t stand yet alone walk! I finally got a diagnosis at 24 and given a very thin booklet (about 10 pages!) told I also had joint hyper joint flexi-mobility. 
      I’m now 53, trying again…… I’ve had 2 time extensions and am now sitting here trying to write. Thankfully there is some useful advice on here about cause and effect and thinking a bit more out of my anxious, depressed, tired, painful, brain fogged box!!
      Wish me luck!🍀 
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    M.F · 6 months ago
    I did not get PIP for mobility for Fibromyalgia which I think is a disgrace
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    Diana · 6 months ago
    I have claimed the old DLA and now PIP for fibromyalgia for almost 30 years. It was always very difficult and was only ever allowed for 2 years at a time before  having to claim again. 7 times I had to go  as far as tribunal. I won all but one claim and got high rate care and mobility. The one I lost was the only time I used the Welfare Rights people to help me and that was when I found Benefits and Work. 20 years ago I developed much more severe spinal problems so claiming was then easier but it wasn't until I was about to turn 65 that I finally had PIP allowed indefinitely. The allowance for 2 years only meant I could never try to get a  motability car. They seem to think that fibromyalgia is not a lifelong condition but I sent every piece of information I could; at times 11 extra pages and 3 pages listing consultants that I'd seen. The change to PIP was very worrying but went seamlessly thanks to Benefits and work and because I then had conditions that were on their list that couldn't be argued as not being permanent.
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    Lianne Samme · 6 months ago
    I’ve had pip for fibromyalgia since 2017, just had my renewal assessment last week so we will see how it goes 
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      Lyndsey · 6 months ago
      @Lianne Samme Well done you.. I now on my 4th Attempt for Fibromyalgia,  Anxiety and Depression. It's so hard to get it. 
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    Kayte · 6 months ago
    I have fibromyalgia and first claimed in 2021. I was awarded lower rate daily living. I then put in a change of circumstance in 2023 as it had got worse, I was awarded lower rate daily living and lower rate mobility. I put in a mandatory reconsideration and sent off all my evidence from neurology, pain management, GP and other services. I was then awarded higher rate for both. I also claim ESA and was awarded the Limited work group. I found the process challenging and it gave me anxiety as I do feel they think your lying. But I am so grateful that I was awarded what I feel I am entitled too.
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    Sandra · 6 months ago
    I have fibromyalgia, me/cfs, chronic migraine, oesteoarthritis in hands, ibs, anxiety and other conditions and was given 0 points by PIP assessor.  I appealed but still got 0 points, I couldn’t take it to the tribunal as my anxiety was too bad.
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      Michelle · 1 months ago
      @Sandra This has just happened to me! It's an absolute joke. I'm also being diagnosed for PTSD but until I get a full physiological report, I get no help whatsoever.  
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    Jenny · 6 months ago
    I tried and failed on several attempts claim PIP for Fibromyalgia, even went to court, which was awful experience made me like I was lying, belittled me, cross examined me,making me feel like a criminal, I gave up in end, until a friend persuaded me to do one more attempt,  which was successful,  years later.
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    Bugsy1943 · 7 months ago
    hi everybody, I am in the process of having my pip award reviewed ,the form is a review form it does not seem as in depth as the initial form but i am worried how i should proceed with it. It really is stressing me out could anyone advise me on how much information i should submit please? 
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      Bugsy1943 · 7 months ago
      @Mrs B thank you so much for your advice, think it might be too late to send for my previous application as i'm already in my extended time to complete it,i keep picking it up and then putting it down i am feeling so down at the moment with it all!!!!! 
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      Mrs B · 7 months ago
      @Bugsy1943 It may help you to call DWP and ask “ could you send me a copy of my previous application or review so i can compare accurately to see if anything has changed.” They are usually happy to do this. I talk to my device to type up my answers, including the heading and page number for each heading. 
      Include your name and NI number on every page, also copy and send in all the evidence letters from before plus any new ones. That way it will help you when filling further ones in as it’s already typed up, and you can also give a copy to your GP, so they know how it affects you on a daily basis if DWP write to them. Plus this can help your GP better support you. 
      If questions included on previous forms are no longer on the new form, I would still add all that information in on another page. 
      I hope this helps.
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    Dee · 7 months ago
    I first successfully claimed PIP in 2018 after attending a face-to-face assessment, but they only give me basic daily living.  I do also have arthritis and degenerative disc disease so I am not sure how much of the award is based on my fibromyalgia, which I have had for 14 years.  I could not face the stress of appealing even though I am in pain before I even commence walking and feel that I am entitled to the mobility element.  I successfully renewed in 2021 and have just completed the forms for my next renewal early in 2024; fingers crossed this will be successful.  As others have said, when that brown envelope comes through the letterbox the stress commences and it is hard work completing them.  I have to just do a little each day, when my health allows, until it is finished but the B&W website is so helpful with this.  It makes you realise that you are not the only one going through it.  I do feel that when you have a long term chronic condition and it is fairly obvious that not much is going to change the process should be made simpler, with maybe just an update required from the claimant's GP.  
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      MD · 7 months ago
      @Dee I wish I could help you with your form.  I used to say to my clients at the CAB. "It's not what you say in the form, yet how you write it, the words you use, also evidence, I've saved 15 years of evidence and re send it for each review process. Benefits and work have so much advice too and so I would also give clients the B&W address. 
      Don't be afraid to go to appeal, the form is online and takes 10 minutes to fill out. 
      Sending you positive energy for a positive outcome. 💐