It was earlier this year that my health took a turn for the worse and I found myself unable to work. My temporary job was coming to a close anyway, and a combination of my ongoing physical health problems and my newly worsened mental health meant that job searching wasn’t something I could do either.
I was left with one choice, the benefits system.
If you’re disabled in the UK, there’s two things you can get benefits-wise. Universal Credit (UC) – with a premium if you’re unfit for work or work-related activity – and Personal Independence Payment (PIP).
If you’re lucky enough to have begun your journey into the hoops the DWP requires you to jump before the changeover to UC, or you live in an area where it hasn’t happened, you may get Employment and Support Allowance (ESA), but they’re, at least theoretically, the same thing.
As someone who has been through the process required for both of these benefits recently, I can tell you that it’s absolutely shite.
ESA goes a bit like this – you hand in doctors’ notes to be signed off by your work coach for a month or so – because god forbid the DWP just actually take your doctors word for it. Then, you’re put on the “health journey”.
Unlike the journey to the (relative) health I was hoping I could go on, it was very much a road of traumatic twists and turns.
A paper form arrives on your doorstep – a nightmare in a brown envelope I will forever refer to as The Form.
Thankfully, it was also available as one you could type in – useful when writing in all of those tiny boxes would leave you unable to use your right hand for about a week.
The Form, for the uninitiated, asks you to explain exactly what it is that you can’t do.
Plenty has been said about The Form, I’m not going to repeat everything that other people have put better than I could. What I will say is that I am forever thankful that I was having regular therapy sessions while I had to fill in The Form.
I’m sure Florence*, my overworked charity-based therapist who was only able to provide me with eight sessions when I really need them indefinitely, had some choice words for the author of The Form.
It can’t have been fun for her that I spent at least two of those eight crying over the feelings of uselessness it left me with.
The questions range from “how far can you walk?” – something you’ll generally never get the same answer to twice – to “can you control your bladder and bowels” etc.
Give all of these details over to an assessor who will literally never meet you for them to see if they can tick enough boxes to give you money so you can afford to eat.
And then you wait.
Universal credit is an absolute pittance, and you’re stuck on the lowest possible rate while you wait for the paperwork.
Next stop is the work capability assessment. During covid-19, they were doing these on the phone, but they decided that I would have to come in, despite me requesting the phone on two separate occasions.
You’ve just told them that leaving the house is hard, that walking very far is hard, that talking to strangers is really hard, so they of course say “come here and do all of these things so we can see if you’re lying or not.”
My work capability assessment didn’t exactly go to plan, in as far as I didn’t get instantly awarded the help I clearly needed, but also in that they failed in their attempt to call me a liar. And they did attempt to.
After saying my assessor would be running more than half an hour late, a time they advanced on from “no more than 15 minutes” and actively encouraging me to reschedule, a message appeared in my file. “Claimant arrived on time. Wouldn’t wait more than 30 minutes”.
Luckily for me at this point is that my work coach – who I still had to see every few weeks despite my doctor signing me off – was outraged at this.
Honestly, she felt like the only person in the whole system who was on my side. I’m fully aware she is part of the system, and her job often involves the trauma of sanctioning and pushing unsuitable jobs on people, but I was a little bit glad to have her.
I did in fact get a telephone assessment after that. A lovely nurse practitioner who seemed to understand my conditions perfectly took less than half an hour – and not all of her questionnaire – to conclude I wasn’t fit for work or work-related activity.
Not that she told me that though. She just ended the call and I had another nervous wait for the decision – formulating my potential appeal strategy the whole time.
The decision arrived by a message telling me to look at another message, which told me to look at an attached letter, which actually just felt like taking the piss at that point. But I was given the top rate. I didn’t need that appeal strategy.
Next up was PIP. In my final appointment with my work coach, she encouraged me to go for it, telling me if it was up to her I’d have the highest rate of everything instantly. If only it were so easy.
You start with a 20 minute phone call in which you provide a bunch of information that you only have to provide again later anyway, and then you get The Other Form.
My time with Florence was over by this point, so I had to venture into this one alone. A lot of crying, some swearing, and just about managing to fight the inadequacy caused by listing quite how useless you actually are. Just how many people have to know I wet myself before I can be given enough money to have a tiny amount of quality of life? Eventually, The Other Form was sent out into the ether as well.
I’m still waiting on the next stage of this. When I requested The Other Form, they told me they’d supply me with information regarding Motability.
This information never arrived, but I still spent weeks thinking about how amazing it would be to whizz around on my new wheels, and never have to worry that I’d be stuck in a city centre because my hips have given up on me.
Weeks of feeling both strung along and vaguely hopeful, weeks where I had no choice but to do things that have made my pain worse; that would have been easier with the help I told them I needed. The Waiting is the worst part.
At one point, I considered calling them to see how my application was progressing. But I’ve learned a lot about the benefits system, and I didn’t want the fact that I was “able” to call them to count against me. As if making one call to reduce the stress of uncertainty meant there wasn’t anything wrong with me.
I believe the next stage of PIP is another assessment. Why they can’t just take the result of the one they just did is beyond me.
We hear about our friends’ appeals and tribunals, and yes a lot of them do win, but can we face that ourselves? Is it worth the trauma for the pittance you might get if you manage to get someone sympathetic? The Form and The Other Form sent me into states of panic, asking me about the very anxiety they were worsening.
You’re less likely to hear about it than about “benefit fraud”, but £15 billion of benefits were unclaimed in 2020. This is painted as people not applying, but in reality it’s down to how difficult it is to actually claim.
The system is so hard to navigate, even if you are a person who isn’t suffering the kind of health issues that stop you from being able to work. Applying for benefits is so traumatic that you should qualify for additional money just for having to go through it in the first place.
I have this theory about our disability benefits and it’s one I’m sure many people share. The system is not about making sure everyone is “deserving”. It’s not about reducing fraud. No, it’s about trying to scare us off.
They want us to become overwhelmed, to exhaust ourselves with worry. And, ultimately, to give up.
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