Health & Wellbeing Politics

The Trauma of PIP(Personal Independence Payment)

September 2, 2021
A white woman with long dark hair, is sprawled across an unmade bed. She is wearing a white shirt and black shorts and covering her face with her arms. It is a vision of despair, the best I could find to express the trauma of PIP

If you’ve ever experienced even a fraction of the process involved in applying for Personal Independence Payment (PIP) you’ll know exactly why I’ve chosen to title this post “The Trauma of PIP”. But I know that many people in the UK have absolutely no idea what is involved in this, and still believe the rhetoric that people are “playing the system”. So I wanted to set the record straight by sharing my own personal experience of applying for PIP, which is far from unique. Because let me tell you, if anybody is able to “play” this system then they must be an absolute genius, because it’s almost impossible to be awarded the points you need even when you’re so sick you can barely leave your home!

What is Personal Independence Payment?

Personal Independence Payment is the UK benefit for people who are disabled and/or have chronic health conditions. Or at least that’s what it’s supposed to be for. The reality is that a large number of people who should be eligible for it are not receiving it, or only receiving a fraction of what they need.

Why do disabled and chronically ill people need benefits? Well, being disabled and/or chronically ill costs money. The charity Scope carried out research into the additional costs faced by disabled people and found that:

  1. disabled people face additional costs of around £583 per month compared to non-disabled people (with 1 in 5 disabled people facing additional costs of up to £1000 per month)
  2. these costs are equivalent to almost half their income (not including housing costs)
  3. money doesn’t go as far for disabled people, with £100 for a nondisabled person only being the equivalent of about £68 for a disabled person.

You may be wondering where all these additional costs come from, because it’s hard to imagine what life is like if you’ve never been affected by long-term disabilities or illnesses. So here are just a few ways in which disabled people may have additional costs:

  • needing pre-prepared ingredients like chopped vegetables, or ready meals, or having special dietary requirements, all of which cost more
  • being at home more often and needing to heat or cool the house because their body cannot regulate its own temperature effectively
  • having to drive everywhere, or rely on taxi services, because they cannot walk very easily and public transport isn’t completely accessible to them
  • having to pay for mobility aids, medications, or personal care support workers to help them manage their symptoms and remain as independent as possible
  • hiring a cleaner, sending laundry to the laundrette, and other household tasks they cannot do alone
  • being unable to work, or working limited hours, meaning their income is far lower than the average

So, as you can see, PIP can make a real difference to the lives of disabled and chronically ill people. The problem is, it is notoriously difficult to access. I’m going to briefly explain the overall problems with PIP before sharing my own deeply traumatic experience with you.

A few key points that show the problem with PIP

I’ve previously written a fairly detailed post about the problems with PIP, which you can read here. But that was written back in 2018 when I tried applying for PIP for the second time, and some of the stats have changed and I’ve experienced an awful lot more since then. So here are the key points you need to know right now:

  1. By June 2019, 75% of PIP and ESA (Employment Support Allowance) appeals were successful, according to Ministry of Justice figures. I can’t find the most up-to-date figures, but this is higher than it was in 2018 when I wrote my first post about this (when it was 66% and 68% respectively).
  2. A Freedom of Information Act response in 2020 found that the DWP had spent more than £120 million fighting challenges to PIP and ESA decisions between 2018 and 2020, despite so many decisions being overturned at tribunal.
  3. Only 42% of new PIP claimants are awarded anything without going to Mandatory Reconsideration or Appeal, and for those renewing their claim almost a quarter (24%) lose it and 14% have it reduced.
  4. And to give these percentages some kind of context, in the first quarter of 2021 there were 170,000 new claims for PIP, and 26,000 changes of circumstances logged, both the highest levels ever recorded since the introduction of PIP.

The system is entirely broken and is hurting those who are the most vulnerable thanks to massive amount of ableism in this country and the government’s sheer contempt for disabled and chronically ill people. You only need to look at how they have treated us over the course of the pandemic, and with so many more people joining our ranks thanks to Long Covid I don’t understand how this isn’t already a national scandal.

The Trauma of PIP – My Personal Experience

My experience with PIP starts in 2017. I’d been getting increasingly ill following a virus in 2015. My joints were incredibly unstable and I was going up our stairs on all fours and down on my bum as my hips would pop out of place constantly, I was having migraines for around 10 days per month at that point in time, and I had been signed off work, left my job, and was trying to work freelance from home around my health but only really managing a couple of hours per week. I was, in effect, still functioning better than I am today but definitely in need of support. So I tried applying for PIP.

That initial application resulted in me not getting anywhere. I don’t think I even scored a single point because the PIP descriptors are notoriously difficult to get when you have fluctuating conditions like I do. Despite the guidance stating that you should be able to do these things reliably and repeatedly, the experience of many claimants is that if the assessor can mark you down as doing something once they will do so. So I tried for Mandatory Reconsideration, the next step, when they have to look at your claim again. But that was turned down too. And I simply didn’t feel well enough to take it to appeal, so I let it drop.

Why did I let it drop? Because the entire process is both exhausting and dehumanising, and honestly when you’re struggling to get through each day the last thing you feel able to do is continue fighting against a system that clearly doesn’t care for you at all. For those of you who do not know, this is what applying for PIP looks like:

  1. You call up the DWP helpline and tell them you want to apply for PIP, giving over some details and waiting for them to send you the first form.
  2. You then fill in said form, which asks you to detail how your condition affects you in great detail. You’re basically having to write down, in black and white, how crappy your life is. It sucks. Big time. And it is exhausting too.
  3. You then have a face-to-face (or during Covid times a telephone) assessment, where someone with some kind of vague medical background asks you the same damn questions and makes notes based on your answers and their own observations. By their own observations I mean things like, “claimant repeatedly moved the hot water bottle on her lap, so she has no issues using her hands”. That’s right, that’s something that an assessor wrote on my assessment, something which I didn’t even know she was making a note on. They are basically watching you like a hawk for any tiny detail they can use against you.
  4. You then wait for a decision, which is made by someone in an office, who has never spoken to you, and probably has no medical background, based on your assessors notes. No, you didn’t read that wrong – the person who decides whether you get any points or not has never even spoken to you. I mean, WTF, right?
  5. If your claim is unsuccessful you then have to fill in a Mandatory Reconsideration form. This is basically your opportunity to tell them any further information you think they may have missed, and point out where you think you should have been awarded points. It’s another form to fill in. Another point in time when you have to go through everything all over again. So we’re at the 3rd time of doing this. It’s exhausting!
  6. If your Mandatory Reconsideration is unsuccessful you then have to file an appeal to be heard at tribunal. This involves, you guessed it, yet another form. In which you tell them the same bloody things you told them several times before. This then gets sent off to the panel for your tribunal, which will be made up of a judge, a doctor, and a disability advocate, who for many of us has absolutely no understanding of our personal type of disability (because disabilities have a wide range, and let’s be fair you’re unlikely to get someone with a condition that keeps them house or bedbound sitting on a tribunal panel!)
  7. And guess what, when your tribunal comes around you have to answer questions, once again, on how your condition affects you. And if you take someone with you, like a carer or a friend, they’re not allowed to speak for you to help you out because you’re finding it so distressing. Nope, you have to answer the questions yourself. It’s traumatic as fuck!

Are your shocked yet? Do you realise how much of a scandal this is? How utterly dehumanising and humiliating it is to have people who do not know you hear the most intimate details of your life (eg I cannot wash myself) and then make an assessment on whether you deserve a bit of financial support? Can you understand now why I felt too ill for go to tribunal in 2017?

My Two Year Wait for Tribunal, and What Came Next…

The thing is, though, we couldn’t afford for me not to claim for PIP. Being ill costs money. And by the beginning of 2018 my migraines were up to a minimum of 50% of the time, I had been forced to give up even the couple of hours per week I was working from home as I just couldn’t do it any more, my partner Thea was out of work and basically my Carer, we moved into a bungalow because I could no longer access downstairs unless absolutely necessary, and I needed support.

So I applied again. I went through every single one of the steps above. It was humiliating. Especially as the assessor wrote things like, “claimant shows no signs of instability” despite me having a huge bruise on my upper arm the day of my assessment (which I showed her) because I had fallen in the bathroom the night before. That’s right, she outright lied!

Amanda, a white woman with long, dark hair and dark eyes is sitting propped up in bed by a flowery pillow and wearing a black nightie. She has a large bruise on her upper arm.
The bruise on my arm that I showed the assessor on the day of my assessment. Apparently I showed no signs of instability and falling!

But the worst part? The worst part was that my tribunal date never came. In 2020, almost 2 years since the start of my application, I contacted my MP about the wait. He thankfully chased them up and I got a tribunal date (over the phone) last year. Finally. By this stage I had been mostly housebound for 2 years, and had actually spent most of 2020 completely bedridden because of a massive flare brought on by a bout of flu in January. But the tribunal can only be done on how you were when you originally applied, not how you are then. So I was 2 years worse off, but could only talk about how I had been in 2018.

I’d like to take just a quick moment here to mention how stressful it is going to tribunal in the first place. Thea and I had already been to two of them at our local courthouse. But doing it via conference call over the phone, without being able to see people’s faces, was even worse. I came away beyond exhausted and desperately hoping they would give me enough points. And they did. Partially. I was awarded the basic daily living component, but denied the mobility component. The strangest part being I was awarded points for mental health issues affecting my ability to go out and about, but not for physical issues because I could walk my son to school one day per week in 2018. Apparently that meant I could reliably and repeatedly walk perfectly fine. Despite having joints that regularly pop out of place thanks to my hEDS. The system is a joke.

But, after 2 long years of waiting and going through this horrific system I was just relieved to take anything. And I thought I could breathe a sigh of relief, because they told me I wouldn’t be assessed again for another couple of years….

Except now I’m waiting for another assessment, in a week’s time!

The Ongoing Trauma of PIP… It’s Not Even Over When It’s Over!

How did this happen? Well in April I randomly received a form from the DWP claiming that I had informed them of a change in circumstances. I had done no such thing, so I have no idea what triggered this, and I could have rung them up and questioned it. But I thought, “fuck it, they’ve based my award on how I was in 2018 and I’m far more ill now, so I’m going to bloody tell them!” And so despite hating the thought of yet another form to fill in, I did it.

I sent that form off about 4 months ago, and last month I rang them up to find out what was going on. I spent hours on the phone to first the DWP, and then Capita, and then the DWP again, because neither one could tell me everything I needed to know. Even that was exhausting. And eventually I found out that they were making a paper based decision and were waiting for information from my GP (I have no idea what they had requested from the GP, but as I’ve got more diagnoses now, different medications, and am much, much worse, I’m guessing they wanted medical proof of this). Apparently there is no deadline for paper based decisions, so I was left to just wait and see.

Then, today, I received both a text reminder and a letter through my door about a Capita assessment on behalf of the DWP on 9th September. This is like going back to step 3 of the process detailed above! To say I am dreading what will happen next is an understatement of massive proportions. Will they take away what little I already have? Will I have to go through the entire process of Mandatory Reconsideration and Appeal again? What happens now? I wasn’t supposed to have to do this again for another couple of years.

I am beyond exhausted. Physically, mentally, and emotionally. The entire process of trying to access financial support has traumatised me in ways I haven’t even begun to acknowledge. I am in sheer survival mode right now. And I honestly don’t know how much more I can take. I suffer from hEDS, Fibromyalgia/CFS, Endometriosis, Chronic Migraines, IBS, Anxiety, Depression, and OCD. My life is limited to spending most of my time resting in bed, trying to save up enough energy to spend a bit of time with my partner and son. My partner has to help me shower when I can, and give me bed baths when I can’t. And I’m currently fundraising for an electric wheelchair (and perhaps a pair of smart crutches too) to try and help me get out of the house more often. I now use a wheelchair as well as a crutch when out of the house.

I desperately wish I wasn’t this ill. I wish I could do more. I want to work, to contribute more around the home, to go on adventures with my son, to just enjoy my life a little bit. I don’t want to be reliant on the state. Nobody does. And anyone who thinks people are “playing the system” and living the high life whilst others are working hard to pay their own way is completely ignorant of both the reality of our welfare system and what it’s like to be disabled and/or chronically ill. Which is why I’m sharing this, because people need to know. People need to know the heartache and trauma that those of us with disabilities and chronic illnesses are living with. As if it isn’t hard enough having our health taken away from us, we then have to deal with downright cruelty from the very systems that are meant to support us all.

So, please, take some time to understand what is happening in our country right now. And remember that this could happen to you or someone you love at any moment. It only takes an accident, illness, or getting older to throw you into this cruel and heartless system. And believe me, you do not want my life!

Edited to add: I decided to use an advocate for my assessment, because I could not go through the whole process again alone. And I cannot recommend this enough! The difference was startling – there was far less push back from the assessor when I told them I couldn’t do something, and there were fewer “leading questions”. And I was awarded both the basic daily living and enhanced mobility for a whole 5 years this time around! Whilst I still feel there were a couple of points they missed on the daily living elements (such as not accepting I have to use aids with my medication), I came away with a far better outcome than I could ever have hoped for. The advocates I used were Personal Independence Payment Professionals.

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  • Reply
    Kim Carberry
    September 3, 2021 at 4:13 pm

    Ugh! I know a few people who have dealt with PIP. It is no fun at all. From what I’ve heard about it the people making the decisions are sometimes not even medically trained and certainly not in every illness or disability that they are making decisions on. The whole system is a joke. I hope you get somewhere with your claim. Good luck x

  • Reply
    September 5, 2021 at 2:52 pm

    Thank you for giving up some of your valuable time and energy to share this journey with others. It’s obvious you don’t ahve much energy to spare, so the fact that you’ve put some of it into advocating for yourself and others in this fashion makes you a hero. I am disabled and I live in the US; our system is different, yet eerily the same. I will be sharing this post to help raise awareness of theunreasonable battles we face every day.

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