My humiliating and degrading battle to claim disability benefits

‘She was observed lifting a medium-sized handbag to remove a purse.’

I was stunned when I saw this statement had been used to justify cutting my disability benefits by more than £100 a month.

After seeing me do this, an assessor decided I could prepare and cook a meal, therefore I no longer needed the highest level of support. Apparently living with a lifelong progressive condition – multiple sclerosis (MS) – didn’t trump an opinion made by someone who had only met me for a few minutes and had no knowledge about MS.

I learned that I had MS in 1998, after enduring undiagnosed symptoms for five years. I was working as a teacher and at one point I was accused of being drunk because my speech was slurred and I couldn’t stand up straight or walk in a straight line. It turned out these are common MS symptoms.

I applied for Disability Living Allowance (DLA) and was awarded the highest rates of support for both the daily living and mobility components. This allowed me to access a Motability car and have people come in to help with things like the laundry and cleaning. These might sound like luxuries but because I struggle to do many everyday tasks, they were vital to my independence.

In 2015, I had to be reassessed for Personal Independence Payment (PIP), the benefit that replaced DLA. I remember panicking about getting the long and complicated form in before the deadline. I sent in supporting medical evidence from my MS nurse and physiotherapist.

On the day of my assessment I turned up with my husband, only to find out my appointment had been cancelled. They said they had tried to call me a few days earlier but they didn’t leave a message or call again.

I had to return the following week. The assessor told me he was a physio, so he didn’t have any specialist knowledge about MS. So much is lost when people don’t understand invisible symptoms like pain and fatigue, or have any insight into how MS can affect you.

After the assessment, I found out I would no longer qualify for the higher daily living rate, even though I had this for 17 years under DLA.

He also noted that I was well-nourished, well-dressed, clean and of good appearance. What has this got to do with MS? I’m not going to go to an interview in my pyjamas!

When I saw the assessor’s report I realised he had disregarded everything my husband and I had told him. My husband had explained how I hadn’t cooked in five years because my cognition problems meant I was at high risk of burning or cutting myself. Yet, the assessor wrote in my report that he saw me picking up my handbag and concluded I could prepare and cook a meal.

He also noted that I was well-nourished, well-dressed, clean and of good appearance. What has this got to do with MS? I’m not going to go to an interview in my pyjamas!

I didn’t challenge the decision because I knew it could mean a further cut and I was also afraid of losing my Motability car. When you appeal against a PIP decision, an independent tribunal will look at the evidence and make a final decision on your claim. Although it doesn’t happen often, it could mean getting a lower award after appealing.

It was a risk I wasn’t willing to take.

I found the whole process humiliating and degrading, I felt like I wasn’t believed. It caused a lot of stress, which made my sensory and cognition problems a great deal worse.

I’ve had to cut back on things that help me, like exercise sessions, which help me to keep my mobility. I’m one of thousands of people with MS who have been cheated of vital support.

Research from the MS Society published this week shows how we are facing a battle at every stage of the PIP process. In a survey of nearly 900 people living with MS in the UK, two thirds (65 per cent) of respondents struggled to complete the PIP application form.

More than half (55 per cent) who had a face-to-face assessment don’t believe their assessor had a good understanding of MS. And of the respondents who saw a copy of their assessment report, six in 10 (61 per cent) don’t believe it gave an accurate reflection of how MS affects them.

MS is unpredictable and different for everyone, but we all need an assessment process we can trust.

That’s why, ahead of the coming election, I’m encouraging people to sign an open letter to the next UK Government. We’re demanding common sense changes to the PIP assessment process, so we can rely on support without being in constant fear of having it taken away.

Until it’s fixed, calling it Personal Independence Payment is ridiculous. They’re not helping you to be independent.

If you go to your assessment showing you’re ‘independent’ it goes against you. But you are only independent because of the support you receive and because you’ve found your way of coping. It makes no sense.

The MS Society’s open letter to the next UK Government, calling on it to make common sense changes to the PIP assessment process, can be found here.

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