Liz started getting symptoms in 1993 and finally received a diagnosis of relapsing MS in 1998.
In 1998 I was awarded Disability Living Allowance (DLA). I was given the high rate for daily living and high rate mobility.
Fatigue is the biggest issue for me. I also have sensory problems with my hands and arms. I can’t hold things, I drop them because I lose my grip.
I remember panicking before the deadline
In 2015 I was reassessed for PIP. I found the form very difficult to fill in and it took me weeks. It’s hard to get my condition to fit into the criteria. A lot of my care happens at home, behind closed doors, which means I have no evidence.
I remember panicking to get it in before the deadline. I didn’t know that I could have asked for more time, but I’m not sure I’d have asked for it. Because at the end I just wanted to get it done and not have it hanging over me. It caused so much stress and my MS got worse.
The PIP report was inaccurate
I asked the assessor what qualifications he had, and he told me he was a physiotherapist. I asked him what he knew about MS, but he just said he had a friend who was an MS physio.
I was given the standard rate for daily living and higher rate for mobility for five years, which meant I could keep my car. On DLA I was receiving enhanced rate for both for the last 17 years.
The report showed me that anything I didn’t have evidence for (where the assessor had to take mine or my husband’s word for it) was ignored.
I was scared I’d lose support if I challenged the decision
The report said I was well-nourished, well-dressed, clean and of good appearance. But what has this got to do with my MS? If I’d been assessed at home I would have been in my comfy clothes. I’m not going to go to an interview in my pyjamas!
I didn’t ask for a mandatory reconsideration. I know they can sometimes take support away, and I was too scared of losing my car.
Cutting back meant social isolation and anxiety
I’ve had to cut back on things that helped me, like my cleaner. It now takes me three hours to clean my small bathroom. After that I don’t have the energy to do anything else.
We’ve also cut down on social activities which have led to social isolation and anxiety. And I’ve had to stop going to exercise sessions which isn’t good for my MS. It’s a vicious circle.
Due to my age it’s possible I won’t receive a full assessment again. But I’ll never regain the benefit I received on DLA. It’s a benefit cut for life.
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