A survey of nearly 900 MS sufferers found “major problems at every stage of the claims process”, leaving claimants betrayed by the same welfare system that is meant to protect them.
The survey found that 55% of people living with MS who had a face to face assessment for PIP don’t believe their assessor had a good understanding of MS.
PIP assessments are carried out by private firms on behalf of the Department for Work and Pensions (DWP).
The MS Society says these assessors are making incorrect decisions based on ‘informal observations’, meaning how claimants look or act during the face to face assessment.
Of the people who told the MS Society that their assessment report included ‘informal observations’, 48% said the person carrying out the assessment had made incorrect assumptions about their capabilities.
The survey also found that 65% struggled to complete the PIP application form because it is too long and complicated.
PIP is designed to support people in managing the extra costs associated with living with a disability or long-term illness, but the MS Society too many people with MS are having this support wrongly or unfairly reduced or cut completely.
This claim has been backed by earlier research by the charity showing that 83% of people who appealed a PIP decision after moving from the old benefit, Disability Living Allowance (DLA), won their case at tribunal.
Ashley, who works in Leeds as a veterinary assistant, was diagnosed in January 2016 with relapsing MS. “I get quite bad pain, fatigue and I have problems with my eyesight”, she said.
She applied for PIP in 2017 and was awarded the standard daily living rate but not the mobility component.
Ashley for reassessed for PIP in March 2019. “As soon as I got the questionnaire, I was confused”, she said.
“There were sections that repeat themselves so I wasn’t sure where to put my answers, and you don’t really get any advice on how to fill it in. I also didn’t feel I had enough time to get the evidence I wanted.”
“The assessor rushed through the questions and didn’t give me a chance to explain anything properly.
“When I got the report it was full of contradictions. There were some things I definitely said that were not in there.
“The report said I‘m fine to work, not mentioning I’ve had to reduce my working hours and take time off.
“I said I had bad anxiety that I take medication for. But my report said I held myself well and didn’t show signs of anxiety.”
Ashley says the report also claimed that her condition may improve because she was taking medication.
“But MS doesn’t get better – the treatments just slow the deterioration”, said Ashley. “The total lack of knowledge about MS was alarming.
“I kept the lower rate for daily living, and still didn’t qualify for any mobility. The decision was all based on what the assessor wrote. None of the information I submitted was taken into account.
“I thought about appealing but I was afraid of making a fuss and losing the award altogether.”
She added: “It makes me really angry. You have a diagnosis of MS and there are clinical records that back that up. And then you get a report that completely contradicts it. It doesn’t make sense.
“You don’t want to prove you have MS, but you have to prove how badly it affects you. To have someone judging you for a chronic illness is terrible.”
Genevieve Edwards, MS Society Director of External Affairs, said: “The PIP process is failing people with MS at every stage, and cheating thousands out of vital support.
“From tackling the complex form and to challenging an incorrect decision, people tell us it’s humiliating and degrading to spend months fighting for PIP.
“Ahead of the coming election, we want politicians to recognise that people with MS deserve a welfare system they can trust.
“Decisions should be backed up by evidence not assumptions, and assessors need to have good knowledge of the condition.”