My mobility isn’t measured in metres: Why PIP needs to understand MS
Rob lives with MS and is studying rehabilitation at university. He tells us about applying for PIP and the difficulties he's had with the assessment process.
My MS journey
In 2016, I couldn’t move my legs for 8 weeks. That was the first time I ended up in hospital. I didn’t know what was going on with me at the time. I was told I wouldn’t walk again. My neurologist said she didn’t think that I would even be able to move my toes.
It wasn’t until later that I was diagnosed with MS. The way my lesions present on my spine and my brain is quite rare. But that’s why my legs and walking are affected so severely.
At the hospital I received brilliant care. I was determined to give every rehabilitation session 100%. I made noticeable improvements at an accelerated rate. After 3 months of being in hospital, I was able to walk short distances with a cane.
After leaving hospital, I committed to improve my mobility and strength and to learn more about rehabilitation. I was making steady progress. I thought there’s no reason I can’t do more. It got to the point where I'd exhausted what I could teach myself. So I decided to go back to university to study rehabilitation.
My MS symptoms also include chronic pain throughout lower back, knees and ankles on both sides, it’s like an expanding cramp. I also have unpredictable spasms, and my energy levels are quite badly affected and they fluctuate.
My ambition is to make rehabilitation methods that are used with professional athletes accessible for those with neurological conditions.
Walking with my MS isn’t straightforward
My depth perception means it’s difficult for me to navigate different terrain or walk on uneven surfaces. Before, if I tripped on uneven flooring, I would stumble but be able to steady myself. Now, on a bad day, I don’t feel safe walking to the shop. I can’t predict how my leg is going to respond, how I make contact with every step.
Since my diagnosis, I've come crashing down about 5 times because I don’t have the neurological control or reaction time to steady myself. I'm still quite young and still a bit bouncy so I bruise a little bit. But the older we get, the greater the risk of a broken wrist or a broken hip.
It’s not just uneven pavements. Stepping on and off pavements, coming down steps, or picking up or carrying things can be a struggle. I feel uneasy walking too close to the road. I'm learning to manage my symptoms, so now I take days off to make sure I don’t become too fatigued.
The crude PIP assessment process
I applied to PIP to support me with everyday life and so I could study at university. The initial assessment was quite a crude interview process. There was a physical assessment where I was asked to touch my toes and to pick up a cup. But that was all they asked. I was awarded the standard rate of the Daily Living component and the higher rate of the Mobility component.
Once I was awarded a vehicle, it made a huge difference. Having the freedom of a mobility vehicle allows me to use my energy more efficiently.
If I want to go grocery shopping, I have to walk to get the food. But then I wouldn’t have the energy to prepare the meal or do anything else that day. Having a car allows me to conserve my energy and allows me to be more self-sufficient.
One telephone call took away my vehicle
By the time I received my vehicle, I was in my first year of university. I had the car for less than 6 months, and then I had a mandatory reassessment via telephone call just 18 months after the initial assessment. I thought how can they assess my mobility with just a phone call? They were reading the questions on the form. When I asked for more explanation about the definition of the questions, they seemed to hurry me through. And gave really simple examples.
When I asked how far 20 metres is, they said it’s about 2 buses. So I said: “yes, I can walk about 2 buses.” But it doesn’t reflect the reality. How long does it take to take me to walk that distance? How many breaks do I take? Am I stable? Am I safe? Could I repeat that distance after completing it? There’s no way any of that can be covered in that question. The risk of walking needs to be considered by PIP.
Based on that one phone call, I was awarded a lower rate for Daily Living and The Mobility component and my vehicle got taken away.
Even though it’s just one person doing their job, that one person’s interpretation disrupted everything. That's not right. I don’t think they should be contacting us directly. Instead, I think they should call our neurology team to check whether anything has changed. If anything, I'm more likely to have a relapse than to improve. It's just really exhausting having to prove yourself, and it’s even more difficult when you’re also in pain.
How I overturned my PIP reassessment
My mental health was spiralling. I was still making myself commute to university. But it was difficult and draining without the vehicle. A big part of the mobility vehicle was carrying everything I need. At the time I still had bowel problems, and it led to some very awkward and embarrassing moments.
I contacted the MS Society, and they put me in touch with a legal advisor who explained the definitions of each question. I took my appeal to tribunal. It took letters from my GP, consultant, neurosurgeon, physiotherapist, lecturers at university, and a disability advisor for it to go in my favour. But even though I’d had reduced support for six months, it was only backdated 3 months. But I was grateful to be able to get a new car.
It worked out in the end. But I almost dropped out of university. I’m lucky that I managed to push through despite the difficulties. Now I've finished my second year and have one more year to go.
PIP needs to base mobility reassessments on real-world independence
My walking is affected by MS every day and I've worked incredibly hard to make the most of the mobility I have. That shouldn't be used against me.
The current PIP assessment doesn't properly reflect what mobility really means for people with MS. It shouldn’t be about whether you can walk a certain distance once. It should be about whether you can move around safely, reliably, and independently in everyday life.
That's why I'm backing the call to fix PIP.
