My Experience With PIP – And Tips For Those Going Through The Process

Michelle Pip

The PIP process can be really hard for those with chronic illness

My personal opinion is that the processes for PIP (Personal Independence Payment), the benefit that replaced DLA (Disability Living Allowance) - both the initial application and subsequent reviews - is made as difficult as possible, so that people just give up with their application. Perhaps that’s to stop the benefits cheats, but personally, I think that when you’re chronically ill, it can be really hard to manage this sort of thing and the process takes its toll on you.

I am ‘lucky’ that I do get a PIP. I say lucky in inverted commas because of the unpleasantness of the overall experience. In this blog, I’ll share my most recent PIP experience and offer my own personal tips for anybody currently or about to go through it.

My next PIP review is due April 2019

I received my review paperwork for this in April 2018 – a whole year in advance.  This was the same 40-page medical questionnaire I filled out the very first time I applied. If none of my details had changed, this would have been particularly irksome – but I did need to advise them of a new additional medical condition, so it wasn’t such a big deal this time around, but imagine if I was just writing the exact same thing as the last time… 40 pages worth! For any new readers of my blog: I am somewhat a collector of medical conditions – not all related to my ileostomy or Ulcerative Colitis.

So, I completed my questionnaire and sent it back in April, just 7 months after I received the final decision about my last review, in August 2017, which was back-dated to April 2017! You can see how people get confused. In the last 3 months, a team have analysed all 40 pages of the form and this week I am to attend a face-to-face consultation so they can ‘further understand’ my condition. This part of the process, in my opinion, is particularly stressful, as these people – although called ‘specialists’ usually haven’t even read my notes, let alone Googled my conditions. So I’ll likely spend a lot of time explaining to them what each condition is, and I don’t have anything straightforward like back pain – I’m a complicated lady! I joke, but it is really very stressful.

In my personal experience, because of this lack of understanding, I’ve had to go through a few appeals. This team of specialists usually go back to HQ and give me a lower score than the previous review (despite significant worsening due to additional medical conditions) which results in my PIP being cut. I appeal; they stick to their decision because hopefully I’ll go away. But I know my conditions, my facts and I stick to my guns too – where necessary, I’ve taken it to tribunal. However, it should be noted that I am only able to do this thanks to some wonderful disability charities that have given me some wonderful free advice on how to appeal and support myself through this process. I’ll share some of it below:

My top tips for getting through the PIP process:

1. Before you start, get all your medical paperwork together including hospital letters, prescriptions lists, referrals and such.

2. Complete the form in pencil first, it might seem time consuming but it can cut down processing time if your information is neat and clear.

3. Ask close friends, family and even work colleagues of any side effects they notice or difficulties they are aware of, that impact on your day to day activities. It is easy to forget or fail to recognise something as an issue when it has become your norm.

4. Before you send everything off, take copies of everything including the form. This way if anything is lost, there is no delay replacing it. It will also help you when it comes to your review (if nothing has changed).

5. Be aware it is a long process and use varying support networks to reduce your stress levels. Be it friends, family, social media or forums; do whatever you do to have fun – game, read, go to the beach.

Stay strong – and let’s draw strength from one another

I consider myself an incredibly strong person, especially when there is a cause to be fought for, but even I have been in tears when having to defend myself and my conditions to a tribunal doctor. So I can understand completely why people give up or don’t even attempt to claim… or worse than that, during the process find themselves in a very dark place. But if we work together and share our stories and tips, we can draw strength from one another.  

by Michelle Williams

Michelle Williams

About the author

My name is Michelle; I live in Kent with my husband and son. I have a permanent ileostomy as a result of Ulcerative Colitis. You can follow me on twitter.

Recent Comments

  • Paul ingram

    Hi Michelle

    I am touched by your message and your initiative to reach out to others .
    My PIPis up in apr 2019 too. I received a review form too 1 year early with 12 questions on.
    I suffer with long term (1998-) severe depressive disorder with anxiety, under active thyroid, anaemia, recurring ulcers/ Barrett’s ulcer (similar condition to yours I’ll make the effort to lookup your illness but it doesn’t sound nice you have my empathy ), recent pneumonia , hypertension , high cholesterol , and treatment for heart and torn upper right arm.
    So as you Seekühe you I have a lot going on. I’m currently on upper PIP and ESA but I heard that they were not reviewing any pip claims made before November 2016 ( like mine /yours ) and the government/ DWP SWORE to high court NOBODY currently on PIP 1.6 million will have any benefit taken off them or face to face . That’s why I’m surprised and can under stand fully your stress at why you were called in for a terminal condition?
    I just wondered your thoughts on my condition and have you any idea of timeframe for a result ?
    Take care

  • Dane Munro

    Hi Paul,

    Don't be surprised mate, I had my PIP award prior to November 2016 and I was still sent a Review, like you, dated 25 May. The Award is current to June 25, 2019. I didn't realise it at first either but the original Award letter will read "they" will be writing to me/you a year before the Award end date just to make sure I am getting what I am entitled to, and it duly came.
    I was diagnosed with Chronic Crohn's in 1984 involving lot's of operations - 12 major resections in all between 1987 and 2011, with the loss of chunks of bowel each time. I've had the last rites done on me loads of time's in ICU, got short bowel syndrome, had my gallbladder removed, my liver half clipped off, a and in June 2012 I had a Subachranoid Haemorrhage that has severely damaged the front lobe of the brain - this occurred after intermittent black-outs eventually diagnosed as epilepsy - and my mental health is now completely affected and different .
    I was given a face-to-face for 3pm yesterday (just to make sure I'm not kidding) and was rung up and told it was cancelled @ 1:29pm. After a load of messing about I now have it tomorrow at the same time.
    So, Paul, dated Pip Review letter sent May 25, deadline June 25 and F2F September 18, and now 20. The whole of a good summer totally stressed out.
    Are they really making sure you are getting what you are entitled to in helping you become more Independent, or are the DWP led Independent Assessment Services [Atos/Capita?Maximus] in what a letter writer in The Observer or The Guardian suggested, nothing but 'the gatekeeper's of the Treasury'?
    From what I have "experienced" via other vulnerable, sick and disabled people as well as looking online if one is "Lucky" enough to keep receiving PIP then we will be reviewed every 2 years regardless of what the award's say.

  • Martin

    Went for appeal last week got refuse for pip, suffering all my life from despession,on 60mg of fluoxetine ,have frautard bones, always need walking stick to walk,I will not give up, going to appeal again, give all medicals​ from doctor, and still wouldn't give me pip,

  • Lee Robbins

    Hi my name is Lee I went for a re-assessment on 18 feb 2019.

    10 working days later by post I was told I was losing 2 points and my money would be stopped. I have c o p d high blood pressure and high cholesterol and I also have mental health problems. Why did I lose 2 points because the hcp said I don't need help with my toilet needs. Yet we never talked about my toilet needs as a man talking to a woman you have never met before you would remember something like that so she lied. So now I only get £22.65 aweek mobility and nothing for daily living. The thing I don't understand is I was awarded pip from 19 8 2016 to 5 10 2019 so why was I called in 9 months early and why did it only take 10 days to take 2 points of me and stopping my money yet it has been 11 weeks now and I still haven't heard anything from pip .Every time I phone up it's 5weeks/ 8weeks now am told that no one has looked at my case yet and am in a queue. I have a stair lift walk in shower and hand rails fitted to the shower and toilet which was put in for me by my mental health services. I have just been to the doctors and been told my breathing has dropped and I have to have a different inhaler as one of the inhalers am on is no longer doing it job. I have 3 different types of inhales I have to use every day. 11 weeks now and I don't know what else to do. I did not expect any think to change on my form I said nothing had changed in fact my condition is worse now so I was surprised to receive a letter telling me I had lost 2 points over something that was never disguised.

  • Kay

    Hi, thank you for this wonderful and informative forum.
    I have been on DLA for some years due to spinal disease and I received a letter last Friday (9 August 19) telling me I’ve got to phone and claiming PIP. The only thing I have done is surrendered my Motability car because it hardly got use, 17000 miles over 3 and half years. Would this have triggered a review of my circumstances? I’m totally confused after so much reading on various sites.

  • Pear

    I have been on enhanced DLA since 2005. In April 2018 I was informed it would stop unless I applied PIP. I have transverse myelitis, bilateral hip bursitis, hydromyelia C 2- T1, osteoarthritis and social phobia. I had to go for face to face assessment early June 2018 which would be my first. The assessment was very flimsy and I never got chance to explain how any conditions affect me. It was yes or no answers and ticking boxes. I was not deemed to be in pain as I wasn't taking opioids but all the information was in my 25 medical notes. 5 weeks later I received the dreaded brown envelope. She had down graded me to standard rate. I sent in a mandatory reconsideration with help from citizens advice with further evidence to follow. They ignored this and sent the reconsideration one week earlier than I was given to get further evidence back. It said we can still give you standard rate. I rang and asked for it to be looked at again, the dwp agreed the further evidence had been ignored. After receiving standard rate again I applied for appeal and my bundle came a few weeks later for tribunal. I sifted through all the assessor reports of which there was many flaws. I highlighted these and sent them as submissions to the court for tribunal. The dwp even omitted some medical conditions of which the court clerk said use that as evidence. I went for tribunal on 23/10/19, I went in with my daughters and was greeted by 3 smiling faces. The judge introduced the dr to his left and a lady benefit advisor on his right. The judge said we are giving you back enhanced rate for mobility and care for 5 years. I said am I dreaming as I didn't have to answer one question. I was in and out in 3 minutes. I'm glad I didn't give up as that is what they want everyone to do.

  • Jacqui

    Hi all,

    Just completed my form for PIP reading through this forum I am not holding my breath but will see what happens, I have Rheumatoid Arthritis, Osteoarthritis, Hemicrania Continuim, Under active thyroid, Pulmonary Sarcoidosis resolved but left me with Fibrosis, have already been through this with my husband so have a bit of experience we went all the way to tribunal with him but prior to the actual hearing got a phone call from the clerk to the panel who was putting all the documents together and re reading to make sure nothing missed by DWP she said they were changing award to Enhanced mobility as it was in black and white that hubby can't walk more than 20 metres so that was a result, fingers crossed I will be successful to.

  • steve jones

    what is the diffeence between a review and renew. mines up june 21 but got review form today. nov 19. conditions they same only change is increased medication plus depression have no new paperwork to send with this form

  • Marianne

    Hi I have suffered with clinical depression for years , it was a works Dr that signed me off work advised I tak redundancy this was 9 years ago . I have had pip for 8 years my illness has got worse if anything medication increased .

    I was called for assesment 25/10/19 I recieved a letter yesterday 14/11/19 just to say they had recieved my notes .Do these people have no empathy how anxiety kicks in ,its a disgrace what's going on in this country .I 65 years old worked full time since I was 15 until 9 years ago .By right I should be on State Pension but they have robbed me of that also .Disgusting Goverment

  • Julie Parker

    Hi all.
    Having poor health I put in for pip July this year. I had f2f at my home, I thought it went really well the lady seemed nice.
    I found out online that once DWP received my assessment from this lady, I was allowed a copy before a decision was made to my entitlement if any.
    Well I was taken aback by the lies and missing information by the so call nice lady.
    Angry, upset, anxiety through the roof.
    I phoned Dwp spoke to them about my assessment report all the lies and missing information and the fact the assessor wouldn't take more medical evidence with her..
    They also asked if I was alone or had support at f2f, when I told them I had 2 people supporting me, there attitude changed and they were very helpful.
    Mandatory reconsideration send 3wks ago.. Oh by the way my claim took longer than normal from 12 July and I didn't get pip until 23nov standard rate 3yrs for care.

  • Tracey Lynne Williams

    Hello Having been on DLA high rate mobility & low rate care since 1994 the time came to claim PIP in July 2019 as my 'indefinite' DLA award was ending I have suffered with seizures since 1977 when I was diagnosed with Petit -Mal (Absences) which progressed to Generalized Epilepsy by the time I was 24 Had the forms to describe how my condition affects my daily life so completed & returned them. My f2f assessment took place at home on 15th October 2019. 28th of December recieved the dreaded brown envelope that told me i scored 0 points so no PIP award which I wasn't surprised by at all given all the people who have been through the process sharing their personal harrowing stories online. No way was I going to let a person who met me for 1 hour & decided to completely ignore what I said when I described what living with such a condition is like as my assessment report from start to finish was full of complete lies the opposite of the truth So that 'lovely young woman totally failed in her responsibility to report what i had said and the fact they call her a professional is a complete joke.
    I am 3 weeks away from my Tribunal Hearing which will be a telephone hearing due to the current Covid'19 social distancing restrictions so I have that time to read the encyclopedia of paperwork sent in the DWP response to my appeal. I may have memory issues but I went for medical assessments every 2 years or so while on DLA but none of those reports are in the paperwork sent to me.Did they think I wouldn't notice it as there was reams of it. Didn't bother asking them why it was missing i got in touch with the medical service & requested the reports directly. I doubt I will get them even though its my data I'm asking for as the DWP would have to explain why it was missing & they never admit they are wrong until a judge says so. Don't give up your claim until the end no matter how hard things get -i know its a dark place but the light is glowing brighter every day for all of us & you are never alone.

  • Karen chambers

    Hello all, I have just found this blog and wanted to add my own bit. I broke my back the first time in November 2010 and thought I had just put it out badly,spent ten days in bed and then went back to work. Had to be careful and just thought it takes a while for it to get better. In Feb 2011 I broke my back again so this time took myself off to A&E for an xray when I was informed I had broken vertebrae. I also had an over active thyroid and had been breaking ribs on and off for two years before that (thought I was pulling muscle). So to cut a long story short I am on esa and was awarded higher rate mobility and middle rate care component from dla indefinitely, Nov 2019 I was sent pip paperwork that I duly sent in. I then had a phone call in April 2020 saying I would be having an assessment on the 6th may 2020 by telephone, I laughed and said how can you assess my mobility from a phone call. I had the call and the woman was very officious and I could tell from her tone that she had decided the outcome at the start of the call, I then received a letter on 21st August from motability who had been notified that I had not got the enhanced rate to be able to keep my car. So I rang pip as I was disgusted that they had not had the manners to let me know (letter lost in post again) we'll it turns out I have had everything taken away I scored a total of zero. As you can imagine I am now fighting to take it further, but apparently there are 5 components of daily living communicating/reading/mixing with other people/making budgeting decisions are four. And because I can do all of this I scored nothing, probably because it is my back and ribs I keep breaking not my brain. Sounds to me that a condition of working for pip is that you lack the sense you were born with, sorry about the essay but my anger is still on a high level.

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