‘The DWP took away my disability benefits. I’ve had so many tribunal dates I’ve lost count’

The Big Issue is shining a light on the Department for Work and Pensions (DWP) disability benefits system. Chelsea was refused personal independence payment (PIP) and shares her story of going through a distressing appeals process for the last two years.

I have battled for my rights for over a decade as a young woman with chronic health conditions. I faced homelessness as a child and became ill as a teenager. I struggled to have my pain taken seriously by healthcare professionals. A doctor once told me it sounded like female hysteria. Now I am having to fight the for my rights to disability benefits too. 

My PIP was taken away two years ago and life has been a disaster since. I am constantly waiting for a letter from the DWP. I panic every time the post comes or I see a brown envelope on the floor. The doctor had to increase my antidepressants last year. All I could think about was quitting and suicide. It was horrific.

I am diagnosed with chronic fatigue syndrome and fibromyalgia, and I am undergoing investigations for a heart condition and Ehlers Danlos syndrome. I was originally given the disability benefit PIP in 2017, and it made a huge difference to my life. 

It gave me independence. I could afford a car and to go to the gym and eat healthily. I can’t stand to cook the majority of the time, so I rely on convenience foods. I don’t have the energy to clean and I could afford a cleaner. 

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My assessment was difficult. It always is. I remember crying pretty much the whole way through. The assessor is incredibly unlikely to know any of the specifics about your condition and, if they do, it’s a very generalised understanding. 

They don’t take into account how it affects you as an individual and your circumstances. I was awarded the standard rate for both the living and mobility components. I believe I should have gotten the enhanced mobility. But I really didn’t want to fight it. I just accepted it. 

Then I had my review in 2021 and I lost the whole thing. I was awarded nothing. There were complete inconsistencies in the report, such as saying I commuted to work every day before the pandemic and could barely manage to go into university. I had my attendance statistics to prove this.

They don’t seem to put very much weight at all on actual medical evidence that you provide. The vast majority of it goes on the assessors’ report. It is incredibly dehumanising. It leads you to question yourself. It’s easy to read these reports and question how legitimate your needs are.

I had never been through the appeals before because I didn’t see the point. It was exhausting. I couldn’t bear it. But I work in the disability sector and I speak to people every day who are fighting it, and it has opened my eyes. A lot of people win their cases at tribunal. That is what pushed me to do it. 

I went through the mandatory reconsideration phase, which is the initial challenge, and I wasn’t awarded anything. So I took it to tribunal. I’ve had so many tribunal dates that I’ve lost count now. They’ve all been adjourned or postponed or cancelled. I had one in April but they said they didn’t have time to finish it. 

It’s been over two years. I’ve asked the DWP for all of my tribunals to be done over the phone because I find it so distressing. I had one where I turned up and they said that they couldn’t read their photocopies of the documents, so it was adjourned. By that point I was already sobbing, and I had a panic attack.

I think they make assumptions about me. They see me, a 25-year-old woman, and they definitely make assumptions. The panels are overwhelmingly men, and I do believe I’ve experienced some misogyny like I’ve experienced in healthcare. 

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You just don’t know who you’re going to get. And you just have absolutely no idea whether they’re going to listen properly or try to catch you out. I was asked about my shopping habits, and they were all looking at Google Maps and questioning my routes to the supermarket. It was traumatic. 

The only thing that keeps me going is knowing that if I win, then that’s over two years of backdated pay. And I will be another person that they have lost against. Hopefully cases like mine will lead to reform. I’d like to see independent, legal advice offered for free to everyone going through tribunal. Advocacy services are a postcode lottery and Citizens Advice are overwhelmed. 

And I’d like to see the system led by the medical professionals you have regular contact with – people who know how your condition affects you. It’s currently completely outsourced to private companies, and then brought back to DWP, and it’s not transparent at all. The whole thing needs to be scrapped and started over. There’s no fixing it as it is.

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.”

Chelsea spoke with The Big Issue via the disability charity Scope, which has been supporting her with the appeals process. The DWP asked for specific, personal details about Chelsea to look into the case and provide a tailored response, but she did not feel comfortable sharing them. This article will be updated if circumstances change.

The DWP 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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