MS doesn’t fit into the boxes PIP provide

Tue 19 September 2023

Rob Denholm

I was diagnosed with relapsing remitting MS in 2006. Most of my symptoms are invisible.

Fatigue is the main one and it’s hard to explain to people because everyone gets tired. But MS fatigue is different. I also experience cognitive issues. My mobility can vary day-to-day, and although I have a walking stick, I don’t use it all the time.

The PIP assessment doesn’t recognise fluctuating symptoms

In 2019, I was automatically transferred from Disability Living Allowance (DLA) to Personal Independence Payment (PIP), for which I had to apply. When the brown envelope came through my letterbox I felt dread, based on what I’d heard about the PIP process.

I found the application horrendous. It took me a number of attempts to fill in the form. I couldn’t sit and do it in one session. The questions are so difficult to answer. They often require binary, yes or no answers. For example “Can you get in and out of bed by yourself?” or “Can you bathe or shower yourself”. But life with MS is not that simple.

With MS, my symptoms fluctuate a lot. I might be able to do something one day, but then fatigue will kick in and the next day I can’t. But the form only gives you yes or no questions. It’s impossible to fit a fluctuating condition like MS into the boxes they provide.

During the assessment I felt like I was on trial

As my appointment got closer, my anxiety increased each day.

At the assessment, it felt like I was on trial. Under the DLA system, there was some empathy: “You have MS, how can we help?” But with the PIP process it seems to be, “You say you have MS, now prove it.” It felt mechanical: a tick box exercise where any need for further discussion or investigation was ruled out.

In one hour, I was asked and had to answer over 90 questions. Often, I was asked the same question in different ways. They’d ask me, “How far can you walk?” A bit later on, I was asked, “How did you get to the assessment centre today”. It felt like they were trying to catch me out.

The 20 metre rule is irrational and unscientific. What does it prove if on one day I can walk 20 metres unaided or with a stick but, at the end, I’m exhausted and collapse? And can go no further and have to spend the next 5 minutes recovering? It takes no account of the pain involved – pain that for me is the baseline for walking.

Being awarded what I need helps me keep my independence

I never expected my assessor to have a full understanding of MS. But I did expect some understanding of, even empathy with, what it’s like to live with a neurological condition that’s not going to go away. The assessor didn’t seem to get it at all.

The whole way through the assessment I kept thinking, “I could lose everything”. The Motability car I had through DLA payments was a lifeline to a sense of normality. In a household with a young son, I’m the only driver. Losing the car would have stripped me of my independence. I can’t afford taxis. Getting the bus isn’t an option either — even if I could get to the nearest bus stop I’d probably collapse.

Much of the original decision was based on informal observations

When I got the report back it was full of subjective observations about how I navigated the assessment centre and my cognitive ability. The observations about these, and other symptoms, didn’t reflect my experience of the assessment. Nor those of my advocate, who was present throughout.

For example, the assessment ended with a physical examination. I was asked to bend my head forward and said I couldn’t do this because it gives me shooting pains (Lhermitte’s Sign). Yet, when I got the report and saw the results of the physical exam, it said I was in tip-top condition!

When I walked with a stick into the assessment room I stumbled. I knocked over a chair and managed to grab another chair to keep me upright. Yet when I saw my report it said, “He navigated the assessment centre well”.

I provided written evidence from my consultant about my cognitive impairment. This was ignored. The report said that I demonstrated no cognitive issues. I’d also provided a weekly diary as evidence. However, this was rejected for the most ridiculous reason: I’d put “Week commencing” at the start of each week, rather than individually dating each day.

I decided to take them to a tribunal, at which point they awarded me my PIP.

PIP needs to change

There’s never been an independent review of PIP involving, or even led by, medical professionals.

But everything needs fixing. From the form to the assessment process, from the mandatory reconsideration to the tribunal process. The PIP process is not trusted and is not transparent or accurate. Not my words, but those of the Work and Pensions Committee’s 2018 Report on PIP. They reported this was at the heart of the lack of faith people put in the PIP process. What’s changed in the last 5 years?

It needs to be understood that MS can be a debilitating, fluctuating and progressive condition. This is sadly lacking in the current process. Enough is enough.

Get support

Our MS Benefits Advice Service offers free advice to people affected by MS in England, Wales, Northern Ireland and Scotland.

You can get in touch with the service through our MS Helpline on 0808 800 8000 or email [email protected].