I have a fear of walking. DWP put me through hell waiting for a disability benefits tribunal

The Big Issue is shining a light on the Department for Work and Pensions (DWP) disability benefits system. Sarah Smithers was refused the higher level of personal independence payment (PIP) and was put through two years of “absolute hell” when she attempted to appeal the decision. She won at tribunal but the damage had already been done. 

I have suffered from chronic pain for a decade and had a nasty flare up five years ago. I kept having to take time off work and eventually they got rid of me. That caused a breakdown mentally and, in the same week, my mum and dad and myself were evicted from our house. It was a lot of trauma all at once.

I have never worked after that because I suddenly developed a condition called basophobia. I was scared of walking. I was scared of walking everywhere – in the house, on the carpet. I was terrified of falling over when I walk. It became so much that I was terrified to go out.

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There were long NHS waiting lists to face so my parents helped me get some private help to get me better. But then two years ago, my dad died of blood cancer. A year later, my mum got blood cancer too but she’s in remission. That brought all the trauma back again in an even worse way.

The only way I could afford any kind of therapy or treatment is by claiming benefits from the DWP – and PIP is supposed to help people cover living costs if you have a long-term physical or mental health condition. I have both. My chronic pain, trigeminal neuralgia, can be debilitating.

My experience being assessed for PIP was awful. I was just completely misunderstood. My doctor and therapist wrote several letters explaining my condition, but the assessor altered those in my report to make it seem like I wouldn’t be eligible. There were inaccuracies in the report too. So I was only awarded the lowest level of PIP – the standard mobility element and nothing for daily living.

It was really terrible. My life has been on hold for a long time. I wanted to use the money to get treatment and go back to work. I never wanted to be getting benefits all my life. It has always been about getting benefits and going back to work. But because the DWP didn’t want to pay out in the beginning, it has held the process up and my condition has deteriorated massively by not having that treatment. 

I’m scared of everything when I walk around the house. I have to grab on to anything I can find. That’s only come about because going through this process has caused a big drain on my mental health. These benefits are supposed to help people who are vulnerable, but the whole process needs to be scrapped and replaced.

My mum had to pay for my therapy when she was in hospital with cancer. I went through the initial stage of the appeal – the mandatory reconsideration – and that took about a year. They didn’t award me any extra points from that. The only choice was to go to the tribunal and then you wait even longer. 

It was two years of absolute hell. I was so anxious in the build up to it. And then the judge at the tribunal told me that I should have been awarded the full rate for the mobility element from the very beginning. They didn’t even ask me any questions. They said I’d provided copious amounts of evidence and that was all I needed to do. It was an online hearing and I was logged off in five minutes. 

I was so angry that the DWP had wasted two years of my life and it caused so many problems with my mental health and chronic pain. It was a massive relief and I got backdated pay, but that can’t erase the damage that has been done. 

I think it’s all about money. The government doesn’t want to pay out for people that are genuinely not well. All they want to do is push people like me into work, even if it’s going to be dangerous for their health. All people want is to get the proper treatment and support they need first, and then they will go back to work. I don’t want to have a life stuck indoors working from home and never going out. 

There’s a lot of negativity around mental health. A lot of people don’t understand it. A lot of my own family don’t understand it. They just think I’ll pull it together. They don’t understand how mental health can really take a hold of you. I was terrified to go out that door without my mum helping. People just don’t get it. I’m angry with the government that they have done nothing to help people like me.

Response from the DWP

A DWP spokesperson said: “We support millions of people with disabilities every year and in the majority of PIP cases we make the right decision.”

The Big Issue has not seen evidence to confirm it makes the right decision in the majority of cases. Official statistics show 68% of claimants win their case when appealing the decision at tribunal.

The spokesperson added: “All our disability assessors are qualified health professionals, and we are investing in their skills so that everyone has a positive experience when claiming PIP.”