Deborah is from Nottingham. She was diagnosed with relapsing MS in 2002 and secondary progressive MS in 2016.
My MS affects me in lots of ways. I have falls and general weakness in my arms. I have fatigue, lots of headaches and numbness in my toes. Walking can sometimes be difficult. I can’t really prepare a meal or use cooking utensils, and my husband helps me get dressed and undressed.
My MS meant I had to stop working. It’s been terrible as it’s taken so long to sort out my money.
Filling out the form was exhausting
I started claiming DLA around 12 years ago. I received higher rate mobility and standard rate for care. In December 2018 I was reassessed for PIP.
Filling out the form was exhausting and depressing, because you’re being asked to look at what you can’t do. I don’t think it allowed me to express how my MS affects me. I wasn’t able to say whether I can always do something. It’s far too black and white, and MS isn’t like that.
Everything in the letter was incorrect
My assessor was a nurse, but not an MS specialist. I didn’t feel like she had a full understanding of MS.
The decision letter said I was “fine” and that I’d soon be “much better”. Everything in the letter was incorrect. It was like they were talking about someone else. It said things like ‘she can do this’, ‘this lady can do that’, things I’d said I was unable to do. I was given the standard rate of daily living and nothing for mobility.
I asked for a mandatory reconsideration. After four months I was given the higher rate of mobility and the higher rate of care until retirement age.
The process just makes you feel worse
I’m not working, I’m not getting any other benefits other than PIP. I’m using PIP for daily expenses and food. My husband only works three days a week so he can care for me. I saw a financial advisor who suggested I take out a lump sum from my private pension in order to help pay for things. That means that when I retire, I won’t have a pension.
This process took me to rock bottom. I was extremely low, I shut myself away from the world. I wasn’t sleeping because I was so worried about money.
It’s an awful system. The crazy thing is that you’re doing this because you’re not well and it just makes you feel worse.
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