The PIP system makes you feel like you’re on trial for being ill

Wed 27 September 2023

Amy Johnson

I was diagnosed in May 2016. I’d just got a new job, and the Monday I started I was throwing up.

After that, I got really bad vertigo, pain, stopped being able to walk in a straight line, and lost feeling in my arms so I was unable to write.

Read more about balance problems and MS

I briefly went back to work but I was only able to work about three weeks all that year.

I’ve just come through another relapse. Now, I work 14 hours a week for Carers Leeds, and I can vary that depending on how my body is feeling.

I don’t have sensation in my arms or chest area and I use a walking stick. My left leg doesn’t like to lift up when I tell it to. I’ve had a few falls. I also get a lot of pain in my thighs. My greyhound, Bleu, is very good at supporting me and guiding me with my walking.

Learning to navigate the PIP process

I first applied for PIP in the first year of my diagnosis. I was assessed at home, and the woman assessing me was understanding. It was stressful though, and I got really worked up about it beforehand.

After that, I had a review in person in Leeds. I never received a letter about it, so only found out when they sent me a reminder text. That was on the Friday, and the assessment was for Tuesday! That was awful. Because of my fatigue, I have to plan everything in advance. I struggle with changes or last minute plans.

The assessments have a knock-on effect

The anxiety made my symptoms worse. My mobility hadn’t been that bad, but as soon as I received the text message, everything spiralled. I struggled to sleep, with my walking and with holding things in my hand. At the appointment I was shaky, and I struggled with my words.

I took my mum along for support. They could see I was having difficulties with my mobility so said they wouldn’t do the mobility section of the assessment. But the report didn’t reflect that - it said I’d refused to do the assessment!

The rest of the assessment was just ‘tick box’ questions. They didn’t take in what I was saying and didn’t understand the fluctuation of symptoms. It was all based on how they saw me on the day, not on any of the medical evidence from my doctor.

The next review came at a hard time

I had another phone assessment two years ago. I was in the middle of a relapse, and struggling with my mental health.

I asked them not to call in the morning due to my relapse and mental health issues, but they ignored this and called at 8am. I didn’t answer the telephone, and they didn’t give me the chance to reschedule – they just decided they would award me the basic allowance. My mum contacted the PIP centre and fought my case. It turned out my form hadn’t been read.

It made me feel even worse mentally. The PIP assessment process made me feel like I was nothing.  I had recently been diagnosed with fibroid myalgia, I was in so much pain and really struggling with my self-esteem.

Thankfully, my mental health is now in such a better place. My greyhound Bleu has had such a positive effect on me, as has the whole greyhound community.

You’re made to feel like you’re on trial

I’ve just received the “change of circumstances re-assessment form”. Mum used to live in Leeds but is now down in Cornwall. So I’m doing it on my own now. After the form was delivered it just sat on my table for a few weeks, and I had to ask for an extension because it was too daunting.

It’s so stressful to have to constantly prove that you’re ill. You’re made to feel like you’re on trial.

PIP helps me run my car so I can get my shopping, or get out and about.

Making PIP fit for purpose

I think the whole benefits system has got worse. Why are people who don’t have knowledge of these conditions judging us? It’s all decided through numbers and tick boxes.

I think they need to have a true understanding of MS. Rather than having assessor look at you, they should have someone look at your medical records. I’m never going to be cured, so why am I doing an assessment every two years?

Then there’s the constant risk of having money taken off me. I couldn’t survive without it in this climate.

The Government must fix PIP

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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].