Living with MS is painful but I’ve never felt indignity like a PIP assessment I delivered a letter to the Prime Minister, signed by over 21,000 people, demanding change

On Thursday I made the long journey from Meanwood, Leeds, to Downing Street to deliver a letter to the Prime Minister. Signed by over 21,000 people, it demands the PM and his government make some urgent changes to Personal Independence Payment (PIP) – the benefit many people like myself rely on to live independently.

In January 2016 I was diagnosed with the relapsing form of multiple sclerosis (MS). It’s a condition that comes with many challenges. At 28, I never thought I’d be wondering how soon I might need a wheelchair. I also live most days with debilitating symptoms like pain, vision problems and extreme fatigue, which make life increasingly challenging.

But one indignity I never expected was the process for claiming PIP.

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Firstly, the form itself is incredibly complex – not ideal for anyone with cognitive issues, experienced by up to 60 per cent of us living with MS. And you don’t really get advice on how to fill it in. But an even bigger – and very common – worry is the lack of knowledge from assessors. My assessor did not seem to understand MS at all, and gave me no chance to explain it. In fact when I suggested it would be helpful for me to give some information about my condition, she seemed to get pretty annoyed.

For those not familiar with MS, it’s unpredictable and different for everyone, so a good understanding is critical if someone’s going to make an informed decision about you and the support you need. But the assessor’s total lack of knowledge was alarming.

‘Anything that was inconvenient to the DWP’s version of me was either ignored or rewritten.’

When the assessment report came back it was full of contradictions and inaccurate information. For example it claimed my condition could improve with specialist input – but treatment does not make MS better, it just tries to stop it getting worse. The report also said I was observed walking with no difficulties and a normal gait. But the assessor never observed me walking, and I definitely don’t have a normal gait!

When I mentioned I had two dogs, the assessor quizzed me relentlessly, asking loaded questions about how far and how often I walk them. I explained there are days I can and days I can’t do things, but the report refused to mention these fluctuations, which define MS for so many of us.

These are just a few examples in a catalogue of mistakes. And while they might seem like minor issues, these informal observations were used to determine my financial future. In the end I kept the lower rate for daily living, and still didn’t qualify for any mobility support – in spite of the fact my condition has got significantly worse since I was first assessed. I’m not usually an angry person, but this makes me really angry. Anything that was inconvenient to the DWP’s version of me was either ignored or rewritten.

At least one in four people with MS have had their PIP reduced or cut altogether – often incorrectly. Figures from the MS Society revealed 83 per cent of people with MS who appealed their PIP decision after moving from the old benefit, Disability Living Allowance (DLA), won their case at tribunal.

I thought about appealing but was afraid of making a fuss and losing the award altogether, which I know has happened to others. Right now I don’t feel supported by the system at all, just scared and exhausted.

That’s why I’m supporting the MS Society’s call for common sense changes to PIP. For years the Government has been dragging its heels, with various politicians promising improvements to PIP, and that we will have a benefits process we can trust. But what’s taking them so long? Why are they leaving thousands of people like me struggling to get by?

It wouldn’t take a lot to make things better. The letter handed in to Boris Johnson on Thursday was not an essay of demands. We don’t need to wait for a lengthy consultation or green paper that never arrives. There are simple changes that can be made right now. Like decisions backed up by evidence rather than assumptions, and assessments carried out by someone with a good knowledge of the condition they are treating.

MS is relentless, painful and disabling, and the current process for claiming PIP is costing many of us our independence rather than giving it to us. I knew coming to London would take everything I have physically, but people need to know about this indignity, and the UK Government must act now. We can’t wait any longer for change.

Ashley Arundale is a veterinary nurse from Leeds.

A DWP told i: “We are spending £84m more a year on PIP and DLA for claimants with MS compared to 10 years ago. Under PIP, 52 per cent of MS claimants receive the highest level of support.

“We will do more to help PIP claimants by introducing a minimum reassessment period and we’ve scrapped unnecessary reviews for pensioners and those with the highest needs.

“Our planned Green Paper will go further as we continue to improve the experience for people with long term health conditions and disabilities.”