Paul sitting in a brown armchair at home

I shouldn’t have to justify being ill

Paul is from Bangor. He was diagnosed with relapsing MS in 1998.

MS affects my life in many ways, but it varies from day to day. My symptoms include fatigue, pins and needles in my feet and arms, muscle pain, and bladder and bowel problems. It also affects my mental health. For a year I didn’t leave the house because of depression and anxiety.

I was awarded DLA 10 years ago, at the highest rates for both mobility and care. I applied for it when I had to give up my job as a finance broker.

I was exhausted by the end of the PIP assessment

At the end of 2018 I had to be reassessed for PIP. I found it extremely difficult to fill out the form because the questions weren’t appropriate for me. They didn’t take into consideration relapsing MS and how symptoms fluctuate.

It was also difficult to provide supporting evidence because my GP wasn’t willing to write me a letter. And my MS nurse and neurologist were too busy to help.

My assessor told me she understood MS because her aunt has it. I tried to explain how it’s not a simple condition and how everyone’s different. But I really don’t think she got it.

The assessment lasted for an hour and half and by the end of it I was utterly exhausted.

I lost £100 a month

After the assessment I got a letter to say they were dropping my rates to lower care and mobility. It meant I lost around £100 a month.

I asked for a mandatory reconsideration, outlining everything they got wrong in the assessment. They came back straight away giving me full mobility. But they didn’t change the care part.

At that stage I thought it was pointless to do anything else. I thought about appealing but that can take up to three years. I was already really struggling with my mental health so I didn’t have it in me to pursue it further. 

I shouldn’t have to prove I need support

With the reduced income I’ve had to do without certain things. It’s had a huge impact on my family and my wife has had to work harder to make up for it.

Going through this has made me suffer mentally and physically. It’s made my anxiety worse and I’ve had to start taking medication and going to counselling because of the added stress.

I don’t think I should have to justify being ill. When my consultant tells me I have MS, I shouldn’t have to jump through hoops to prove I need support.

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