John's reality
My name is John, and I have been receiving Personal Independence Payment (PIP) for the past two years. But getting here was far from easy. It took over a year, and my initial application was rejected, forcing me to undergo a long and stressful appeal process.
I was diagnosed with Multiple Sclerosis (MS) quite late, in my 60s. It progressed much faster than I could have ever expected. In August 2021, before I even knew what was happening to me, I was still working at the Ministry of Defence as a Policy Advisor. I was deployed to Afghanistan to help with the evacuation. Before my diagnosis, I had spent years working and contributing, and I never once thought I would be in a position where I needed to rely on benefits.
It all started when I had an MRI scan on New Year’s Eve 2021, followed by a lumbar puncture. By May, I finally had my diagnosis. But by then, I was already noticing how much my body had changed. For example, I couldn’t do things that had once been second nature to me. Someone who had previously worked with the Department for Work and Pensions (DWP) told me I might qualify for PIP. I had never even heard of it before. At first, I assumed I wouldn’t be eligible, but after researching, I realised I should apply.
I’ve worked my entire life, so I never really saw myself as someone who would need benefits. But PIP exists precisely for people like me—people whose lives have been turned upside down by illness and disability.
Applying was a nightmare. The process was so difficult and one-sided that it made me even more determined to see it through. When I finally received my assessment, DWP scored me zero for the impact MS had on my daily life. Zero. If they had at least acknowledged some of the difficulties, if they had scored me a five or six or even a seven instead of the eight I needed, I might have accepted it. But to say that MS had no impact at all? That was infuriating.
There is a bus stop 100 meters from my house. Usain Bolt could get there in less than 10 seconds whereas it takes me 10 minutes but we would both score a zero for impact on our lives. It’s ridiculous.
I contacted the MS Society as my diagnosis became clear and helped me, but the PIP process is so broken. Through them, I became more involved with a support group. Speaking with others in the same situation, I could see the stress and anxiety the PIP process causes. These are people who have worked their whole lives, contributed to society, and now find themselves needing support, not because they want to, but because they have to. They aren’t “scroungers”. They deserve help.
The way the DWP assesses people is deeply flawed. My assessment was done over the phone. There was no video call or face-to-face interaction. It was just a voice on the other end of the line making a life-altering decision about me without ever seeing me.
The forms were another battle. They don’t account for the fact that some symptoms are deeply personal and embarrassing to talk about. How do you properly explain that you routinely wet yourself? That you have to wash your clothes and shower multiple times a day? That these things affect your dignity and mental health just as much as your physical well-being? The system doesn’t seem to recognise that these struggles are real and matter.
After my appeal, DWP stated they would review my case in ten years. But there was no acknowledgement that MS is a progressive disease and that there is no cure. For others, they sometimes set a review period of just one or two years, as if somehow MS will magically disappear in that time. If DWP knows of a cure coming in two years, I’d love to hear about it!
I use my PIP payments for exactly what they are intended for. I have someone come to my flat to help me with the things I can no longer do alone. I pay extra for pre-chopped food because I can’t use knives safely anymore (I would end up cutting my fingers). If I lost this support, I’d have to cut back even more, and I’ve already given up so much. Without it, I couldn’t leave my home as much. I’d be stuck. That’s not right.
I’m lucky in one way that I have a pension. MS forced me into early retirement, but at least I have that financial cushion. For many others, that’s not the case. They don’t have enough to cover even their basic costs, and without PIP, they would be left with nothing.
What frustrates me is how hard I fought to be recognised. A panel decided my appeal (a judge, a medical professional, and a third-panel member). They were given all my paperwork and the DWP’s assessment. On the morning of my appeal, the judge called me to explain that the panel had already reviewed everything and unanimously agreed that I should be awarded PIP. They didn’t even need to ask me any more questions. So how is it possible that the DWP saw no impact on my life, but the panel immediately saw how much MS affects me? How is that right?
People don’t choose to have MS. It’s not like I went to Tesco, saw it on a shelf, and thought, I’ll try that for a bit, then return it when I’m done. No one would choose this. But here I am, and here are so many others like me.
This isn’t just about MS. There are so many disabilities and conditions that people are living with, and as a society, we need to do better. We have to help people. The system should be fair and accessible and should never make people feel worthless for needing support.