The challenges of navigating the UK disability benefits system
I was diagnosed with primary progressive MS in June 2018. For a couple of years I’d had severe back pain and was struggling to walk. I later found out this was related to MS. I'd heard of it but thought it only affected young women. I know now that's not true at all.
How MS affects me
I've got pretty much all of the MS symptoms - pins and needles and numbness from head to toe, foot drop, cognition problems, and bladder problems. The maximum I can walk is maybe 10 metres and then I'll have to sit and rest. I can't use public transport because I can't get to the bus stop. I have to spend a lot on taxis to get around. I was a plumber and joiner but had to retire because I could no longer fulfil my responsibilities in the job.
Starting the disability benefits journey
In late 2017, before I'd been diagnosed, I applied for ESA. I'd been signed off work with sick notes explaining my back pain. I had to wait six months for an assessment date and afterwards they kicked me off ESA, saying I was fit to work. With no other form of income my only option was to apply for UC.
My assessment was in a town 12 miles away. I was in severe pain and already struggling greatly with my walking. They refused to come to me or give me an interview in my own town. It's like they wanted to see how I dealt with getting to a different place.
Equality Together helped me to apply for PIP and to fight this ESA decision. After they told the DWP that I would appeal their decision, they backed down and repaid me £2,000.
As I'd already started applying for UC I couldn't get back on ESA. On UC they put me in the ‘limited capacity for work’ group. This meant I had to sign on at the Job Centre every two weeks. This was really difficult - the office was on the third floor and the elevator was for staff use only. Getting up the stairs was a massive struggle. It was also a six-mile round trip, so every fortnight I'd have to waste £12 on taxis which I couldn't claim back.
My work coach could see the pain I was in and how completely exhausted I was after the journey there. After a few of these visits he said we could have the interviews over the phone.
I had to agree to apply for at least 10 jobs a week and spend 10 hours a week doing internet work searches. I didn't think this was right. When you look at the jobs I might have been capable of doing, only one or two of those roles even exist. Yet they expected me to apply for 10 a week! What was I supposed to do - reapply for the same job??
The long wait
I was going through a PIP application around the same time. It took seven months before I got that decision, they gave me the highest rates for both daily living and mobility. This is when they decided I didn't have to sign on for UC anymore because they considered me ‘not fit for work’.
It was this January (2019) when my PIP got sorted out and then the UC. Life is a lot easier for me now. I’ve got my freedom back – I have a scooter so I can get out and about. For most of last year, unless I had a medical appointment or job centre appointment, I didn’t leave the house. Most of my money went on taxis to get to the places I had to be.
Risking health to guarantee income
I've never been sanctioned. I forced myself to go to the interviews when I really shouldn't have because of my health. In the past year my health and mobility have suffered. I've gone from walking to using a wheelchair. I think the stress substantially contributed to my decline in health.
I'm treated as if I will get better, but with primary progressive MS that just isn't the case. I think they need educating about MS, from my experience, the frontline staff just haven't had enough training to be able to deal with it.
Volunteering and looking to the future
To get back into work I'd have to retrain. I've recently started volunteering for my local MS Society group, this is my way of retraining. I'm not saying I can never work again, I'm just not capable of working at the minute.