It’s made me feel like less of a person, and like what I have to offer the world is worth less (Picture: Chelsea Sowden)
In March 2021, I had a scheduled review of my Personal Independence Payment (PIP).
This means my award – the benefit I’d previously been deemed eligible to receive for three years – was back up for debate.
I lost it all. I was, according to decision makers at the Department for Work and Pensions, no longer entitled to a penny.
Apparently, I wasn’t eligible anymore, despite my conditions remaining the same. I went from the standard rates of both the daily living and mobility components to nothing.
Part of me expected it to happen. I’m not the first disabled person to have to fight for what they’re entitled to and I won’t be the last.
That evening I was overwhelmed with despair – I was angry, upset, and felt dehumanised.
Work on my appeal started almost immediately, but I didn’t expect to still be sitting in limbo over two years later.
As a child, I was diagnosed with chronic fatigue syndrome and fibromyalgia, and have struggled to walk since a back injury when I was 16.
Just getting around my home is difficult, and even now, at 26, I’m still undergoing investigations with specialists for a long list of unexplained symptoms on top of struggles with my mental health.
When I first applied for PIP, I was nervous because I’d heard it was difficult, and my unease grew when I sent them some NHS information about my condition to be told my assessor didn’t have time to read it.
After an exhausting and humiliating process, having to describe in detail things like how I use the toilet, a letter arrived saying I was successful. I’d be getting £77.65 per week for three years.
Losing the money was one thing, but it also felt like I was losing who I was (Picture: Chelsea Sowden)
PIP, as it’s designed to do, allowed me to pay for some of the extra costs that come with being disabled like using a car or taxi for every journey, buying ready meals, and using more energy for heating as I can’t regulate my temperature properly.
When I found out that I’d lost it, I worried about how I’d be able to live comfortably and safely, especially knowing I couldn’t afford support with things like cleaning and meal prepping anymore.
So, after a year, I ended up having to leave my much-loved independence behind to move back in with my mum over 100 miles away.
Losing the money was one thing, but it also felt like I was losing who I was.
Scope, Citizens Advice, and the wider disabled community all helped me with filling out the forms and planning my appeal.
Despite feeling deflated, I felt I had little to lose by appealing.
Two-and-a-half years later, I realise I was wrong. I had my mental health to lose, and I’m now on a higher dose of antidepressant.
Recently, I was informed that my final tribunal hearing will take place in October of this year.
By that time, I will have had three birthdays, moved home three times, and completely lost trust in the system since first losing PIP.
It has to happen eventually, but I’m not holding out hope that my case will finally be concluded by then. I’ve been let down too many times by the tribunal service to trust it.
I should never have had to appeal to a tribunal level in the first place.
And I’m not alone.
According to the most recent government data, mine was one of 21% of planned reviews that resulted in the award being disallowed.
And I question how we can have faith in DWP decision making at all when 59% of DWP decisions that are overturned at tribunal are down to the tribunal reaching a different decision based on ‘substantially the same facts.’
Part of the problem is assessors having little to no experience or specialist knowledge in the conditions and impairments that claimants have, like physiotherapists.
That’s not to say that these staff don’t have medical expertise, but we can’t expect accurate reports from ill-matched assessors.
Being assessed by a medical professional that has some level of expertise in my primary condition is just one of changes I’d like to see, along with putting more weight on submitted medical evidence.
I was overwhelmed with despair – I was angry, upset, and felt dehumanised (Picture: Chelsea Sowden)
I also feel there should be an element of punishment – benefit claimants face sanctions like the suspension of benefits for missing an appointment. So why can’t the DWP when they make so many erroneous decisions?
I’d like to start with an independent inquiry into the decision making process, and an apology to every claimant let down by the system. And where backdated pay is awarded after appeal, interest should be added.
But ultimately, it all comes down to listening to disabled people and collaborating on a benefits system that actually works for us, rather than harming us.
In my view, the disdain with which the DWP treats disabled people is devastating. I even emailed my MP asking for their support in seeking justice and to question a system that is so often incorrect, unfair, and dehumanising. I was brushed off.
He told me he couldn’t get involved in decisions, ignoring my request that he ‘raise the injustice that faces so many disabled people across the country.’
So, that’s why I’m writing about it here. I’ve felt incredibly alone through this process, but I hope being open helps someone else advocate for themselves.
Even now, over two years since the assessment, I freeze when I see a brown envelope in the post. Sometimes it’s an innocent bill, but other times it’s more bad news about my PIP claim.
I stopped answering the phone to unknown numbers long ago, just in case it’s another surprise tribunal hearing that I didn’t receive a letter about and haven’t prepared for.
I even worry sometimes that someone is watching me when I leave my home to try and catch me out for seemingly not being disabled enough to receive PIP.
It’s made me feel like less of a person, and like what I have to offer the world is worth less.
The main thing keeping me going has been the data that shows just how wrong DWP decisions are and that the problem is systemic, rather than personal.
For a time, I worried about being yet another person who died while waiting for their case to be properly dealt with by the DWP. Now I’m motivated to become one of the 68% of people that make successful appeals at tribunal.
And perhaps, deep down, I still have some remaining optimism that we can change the system for good.