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"Challenging my benefits decision almost broke me."

Andy shares his experience of challenging his benefits decision, and the impact on him and his family.

My name’s Andy* and I’ve been given a preliminary diagnosis of multiple sclerosis.  

I have a help dog called Doug. He helps me get up. When I stand up, he uses his head to support me. And he gets my wife, Jane*, if I fall. I have a few falls, not as many as I used to, struggle with my speech. I have face and hand spasms. I have issues with my bladder and my bowels. 

I was abused as a child physically, mentally, emotionally, the whole nine yards. My mental health manifested in self-harming since I was seventeen. I was working weekends, I used to work full-time, but I had to stop working. I thought admitting that I had a mental health issue was admitting I was weak. 

My benefits assessment

I've been on PIP (Personal Independence Payment) for about fourteen or fifteen years. In May I had a telephone assessment for my PIP payments. Looking back on it, the PIP form wasn't filled out the best. We didn't do a good job, so it wasn't their fault. I'll admit when I've done something wrong. 

But with the history of challenging decisions, which I've had a few, pretty much every PIP assessment goes to a mandatory reconsideration, or even an appeal in the past. A mandatory reconsideration is asking the Department for Work and Pensions (DWP) to look at their decision again. 

This time, the assessor calling for my mandatory reconsideration rang up 40 minutes late, and to put it bluntly she was awful. The call was an hour and 29 minutes of pure torture, to the point where I ended up harming myself. 

I was stuttering over the phone and my speech was a bit slurred whilst talking and answering questions. She didn't ask if I needed to stop or anything like that. And I got upset talking about the issues I have with my bladder and my bowels. 

Very quickly into the call, the assessor had quite a patronising manner. She was making me believe things, like I could walk so many meters, and that I could cook, and be in the kitchen unaided. She was planting things in my head like, ‘you can do this, you're not as bad as think you are’. 

Looking back on the call, she was very leading with the questions, and not very informative. She had no empathy and no duty of care. 

Aftermath and impact of the PIP assessment and losing benefits 

When my wife Jane got home, I was in a hell of a state. The kids had to go upstairs, Jane spoke to the assessor again, to let her know how bad I was doing. 
I was in a really bad state, could hardly speak and I was really upset. I didn't sleep that night.  

About a month after my assessment, when PIP was due, Jane checked the finances and we’d only received a partial payment for PIP. She rang and found out that the claim had been stopped because I didn't meet the criteria. But the letter had not been sent out and we didn't get it for another week or two after. 
We were a bit stuck financially, and unprepared. We have an emergency food credit card and with the money we got from the last PIP payment, Jane basically spent all of it on food. It didn't go to any bills or for anything else, Jane panic bought food. With PIP stopping, Jane was worried about other money stopping. This was the first time it had happened whilst on Universal Credit and Carers Allowance, and these payments also stopped as well. We didn't just lose PIP. In total, we lost £600 a month.  

Results of mandatory reconsideration

There were issues with the postal service. When we finally sent the 40 pages of paperwork for the mandatory reconsideration, despite sending it by recorded delivery - they couldn't find it.  
About two months passed. It got so bad, we got a case manager that Jane was talking to, and even the case manager couldn't find our documents. 

But then in September, (four months after that first assessment) we got a call from a different case manager, completely out of blue, to say that my PIP payments had been reinstated. We didn't get a letter for about another three weeks after, because we were still having issues with the post. 
Although the claim is active again and I’m receiving PIP, it's not an accurate reflection of my disability. 
To be honest, I'm exhausted with it. I didn't want to complain. I should, but the amount of emotional and mental stress it put on us as a family, it nearly broke us. We’re exhausted as a family.  


Time and time again, benefits assessments cause extreme anxiety for disabled people like Andy. Sign Scope's petition for disability benefits #WithoutTheFight 

*Names have been changed to protect privacy. 

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