'I'm an amputee and the DWP reduced my disability benefits. I worried I would be homeless'

The Big Issue is shining a light on the Department for Work and Pensions (DWP) disability benefits system. Aidan, who claims personal independence payment (PIP) and employment support allowance (ESA), shares his story of having his benefits cut back after an assessment went against him.

I was driven to severe psychological trauma to the point of being suicidal when the government cut back my disability benefits. I still don’t understand why they did it. Maybe I didn’t communicate my situation well enough, but I also believe the DWP made mistakes. It cost me my car and financial support and made me worry about ending up homeless. 

I have a neurological disorder called neurofibromatosis which affects me physically and cognitively. I’m on the autistic spectrum and I have growths across parts of my body which led to the amputation of my leg. I can’t wear a prosthetic because of the pain, so I use a wheelchair.

I get the disability benefit PIP, which helps with the added costs of my everyday life, alongside ESA, which is extra financial support because I can’t hold down a job. Part of that is down to stress. I upset people because of the autism. If I make mistakes I stress so badly. 

I was on the standard rate for the living component of PIP and the higher rate for mobility until last year. Even though I believed I should have had the higher rate of living, I didn’t want to look a gift horse in the mouth, so I left it. But then I had a reassessment to renew my PIP and they dropped me to the lower rate of mobility too. 

I struggled with the assessment. They asked how I managed at the GP and hospital, and I tripped up on my communication. That’s a loaded question for me, because the only reason I can go to GPs and hospitals is because they are extremely familiar environments. I’ve done it since infancy, multiple times a year, for my entire life. 

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It was the same when they asked about the grocery shop. I’m only comfortable because I worked in one for 14 years and I don’t get as stressed as I would in other places. 

The assessment came back and it said things I believe were demonstrably untrue, such as that I didn’t have an autism diagnosis. I challenged the DWP and went through the “mandatory reconsideration” stage, when I asked someone to speak on my behalf. They said I had no trouble with communicating because I engaged fine on the phone. But it wasn’t me who was on the phone. 

I was worried about this loss of income. I didn’t want to end up homeless. I’ve been in a sofa-surfing situation once before. If I can’t guarantee money is coming in, I can’t pay rent and I can’t pay bills and I worry about ending up on the street. I’ve had that looming over my head.

I lost my mobility car, which is adapted for my needs and I’ve effectively been housebound. That was really hard, because I enjoy going to music gigs with my friends. I’ve lost out on a massive support network because I was forced to stay home. I was living in quite squalid conditions in the flat because I haven’t had the mental capacity to keep the place tidy and clean and sanitary. It got really bad.

I was fortunate enough to be helped by a friend with a Master’s degree in medical law. People shouldn’t have to go through it alone. At the last minute, a staff member for the DWP submitted extra evidence in my case. I worried they were working against me, but she also couldn’t understand why my PIP had been reduced. She was very supportive. 

There was overwhelming evidence in my favour from specialists and I won. Payments were backdated and I was awarded top level of PIP for 10 years, which is the longest you can get it for. But it needs to be for life. There’s no cure for autism. There’s no cure for an amputated leg and all the other problems I have. 

I’m slowly managing to pick myself up out of that despair. Before, I was just treading water and going through the motions and waiting for them to hurry up and do the morally right thing. 

I take some of the blame. But most of the blame is categorically with the DWP. They failed to do their due diligence. They could have contacted my GP or specialists, or just asked me for anything that was lacking. They should have a duty of care. 

They legally shouldn’t be allowed to act in a way that causes any sort of harm, whether that is physical or psychological. It is an act of neglect because they haven’t done things properly. In my instance, it has caused psychological trauma. I’m not the only person who has gone through that. I am on a mission to shout it from the rooftops so more people know about these stories. Hopefully there will be public outcry.

Get help if you are struggling. Call Samaritans for free on 116 123, email jo@samaritans.org or visit samaritans.org for useful resources and advice on coping during this difficult time.

Response from the DWP

A spokesperson for the DWP said: “We were not given the opportunity to look into the circumstances of this case but we support millions of people every year making sure they get the benefits they are entitled to as soon as possible.”

Aidan spoke with The Big Issue via the disability charity Scope, which supported him with the appeals process. The DWP asked for specific, personal details about Aidan to look into the case and provide a tailored response. This has not occurred but this article will be updated if circumstances change.

The spokesperson added: “Our disability assessors are qualified health professionals who are trained to provide a supportive service and decisions are made using all the available information. If someone disagrees, they have the right to ask for a review.”

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