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

by Michelle Williams

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.  

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,

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