My outrage was never about the money (Picture: Alex Akitici)
I couldn’t believe what I was reading.
I’d just received a letter from the DWP following my phone interview for PIP – which I’d applied for because I have Ehlers-Danlos Syndrome (EDS).
My condition means I faint spontaneously – anywhere, at any time – which is both very dangerous and incredibly hard to live with.
PIP, or Personal Independence Payments, helps people with long term physical or mental conditions or disabilities with extra living costs. It’s split into two parts: mobility (for those who need help getting around), and daily living (for those who need help with everyday tasks).
One letter confirmed I was getting the mobility allowance, which I was happy with.
But I’d been denied the daily living allowance.
At first, I wasn’t bothered by this. After all, I’d only applied for PIP to be eligible for a disabled person’s railcard.
It was only when I started reading through the DWP letter, which showed how I’d been scored on the daily living assessment, that I started to feel a sense of indignation creeping in.
‘Cannot cook a simple meal using a conventional cooker, but is able to do so using a microwave,’ I read – and my blood started to boil.
I’d been denied the daily living allowance, Alex explains (Picture: Alex Akitici)
Their assessment was utterly incorrect – I can’t cook without help in the kitchen, full stop. What if I’m holding a knife and then pass out? What if I’m taking scalding hot food out of the microwave and collapse?
As I compared the two assessments, my outrage grew. The mobility assessment had correctly concluded that I can’t go anywhere without aid; but the daily living assessment said I could engage with other people, face-to-face, unaided.
The two statements were completely contradictory – and I knew I couldn’t just accept it.
My outrage was never about the money.
It was about how I’d been scored incorrectly, and how the scoring proved my suspicions that I hadn’t been heard or understood in my assessment phone call – which, incidentally, was one of the most degrading experiences of my life.
Every time I come around after fainting it’s like I’m trapped in my own body, Alex explains (Picture: Alex Akitici)
And it was about how I should be treated as a human being, rather than a tick-box exercise.
I’m 50 now, but I only got diagnosed with EDS when I was 41; I’d started losing consciousness and I had no idea why.
It turned out I have autonomic dysfunction, which means my autonomic system malfunctions especially when I am upright. It can’t control my blood pressure or heart rate properly, and there are significant issues with my circulation.
When I sit still or stand for too long, the blood pools in my feet and can’t get to my brain quick enough – which means I faint.
Having EDS is utterly terrifying, says Alex (Picture: Alex Akitici)
It can also happen when I get up after sitting – even after just sitting on the toilet.
Having EDS is utterly terrifying. The first time I collapsed, I thought I was dying.
Every time I come around it’s like I’m trapped in my own body. I can hear but I can’t move, or respond, or do anything.
It’s like being buried alive.
The pain is relentless, too – I’ve had to start using a wheelchair. Because I’m hypermobile, which is another element of EDS, and because I’m collapsing all the time, my joints are often in agony.
At the moment, I have a shoulder separation injury from frequent fainting – there’s a big lump of bone sticking out of my shoulder.
I can’t expect the system to change if I don’t speak out, Alex points out (Picture: Alex Akitici)
Living with EDS is awful – but, all the same, I’d never thought of applying for PIP. I work as a Streetworks Manager but have to work from home and when I do visit an office, I have to be chaperoned at all times.
I think I’d lose the will to live if I didn’t work.
But, once I learned I wasn’t eligible for a disabled person’s railcard unless I was receiving disability benefits, I realised applying for PIP was a sensible idea.
For one thing, my husband and I have spent all our life savings and had to remortgage having our house adapted, putting the bedroom and bathroom downstairs so that I won’t have a fatal injury – I’d previously collapsed on the stairs twice.
We used all our savings and re-mortgaged our house – and the PIP money would certainly come in handy to help us pay this money back.
The phone interview for PIP in September 2023 was awful – because my condition really gets me down. In fact, my antidepressants have more than tripled in the last few months, from 37.5mg to 150mg.
When I was explaining to the woman on the other end of the phone about how it feels to pass out, I was hysterical; I couldn’t stop crying, and the woman I was speaking to kept asking me if I wanted to ‘take a minute’.
After I called the DWP to question my scoring, they sent me a copy of my report, which detailed the thinking behind each score.
As I read through this report, I was appalled.
I’ll keep speaking up, vows Alex (Picture: Alex Akitici)
Firstly, the woman who did my interview had spelled my condition wrong on the report – she’d put ‘automimic’, rather than ‘autonomic’. I found that so unprofessional, and it all felt so degrading.
She’d written that I’d be fine going to the doctor’s, and that I could open the door without an issue. But I’d collapsed at the doctor’s, and I once collapsed opening the front door, too – in doing so, I smashed both my knees.
She added that I ‘coped well at the interview’; ‘normal manner, not anxious’. But I’d been crying.
‘Is this the same person I spoke to?’, I wondered.
I also learned that one of the factors for why I’d been given the mobility allowance was because I was on epilepsy medication, because it helps with migraines – another symptom of my condition.
But an assessment of my condition shouldn’t be dependent on the medication I’m taking.
Fainting is like being buried alive (Picture: Alex Akitici)
As I read through everything, I felt like an object. ‘If they had to live in my shoes for a day…’, I thought.
I knew I had to get the scoring I deserved.
The only way for me to do this was to get a tribunal; but to get a tribunal, you have to launch an appeal. Before you can do that, though, you have to launch a mandatory reconsideration request, which challenges the DWP’s decision.
I’d have given everything to have my health back and not be forced to go through these convoluted steps – but I didn’t have a choice.
In January, I went to see my local MP – I actually fainted in front of him – and he tried to speed everything up, but wasn’t able to.
Ultimately, I went through all the steps, but the whole process felt so dehumanising.
Finally, I got a tribunal date through: April 23, 2024 – 10 months after I’d originally applied for PIP.
The tribunal was so different to every other part of the process. Everyone was so nice, and I could tell the disability expert actually understood what I was talking about.
Unsurprisingly, I was rescored correctly. The original score about me being able to use a microwave, for example, was changed from a score of ‘two’ to a score of ‘four’: ‘Needs supervision or assistance’, which was correct.
Now, I’ve got both the mobility and the daily living allowance – but I should never have had to fight in the first place and go through such an arduous, multi-faceted process just to be treated like a human being.
I didn’t do it for the money. Even if they’d given me the money, but scored me incorrectly, I would still have fought for my assessment to be rescored.
But I didn’t just fight for myself.
I did it for all the people who aren’t able to speak up for what they deserve – and because I can’t expect the system to change if I don’t speak out.
It seems to be a constant battle for people with disabilities to have any type of equality. But I’ll keep speaking up.
Because everyone deserves to be treated as the human being they are.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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