Evelyn Leitch was diagnosed with primary progressive MS in 2000 after years of symptoms and spoke out on how the Personal Independence Payment (PIP) assessment failed her.
She underwent the PIP assessment last year and, despite previously receiving lifetime awards through the Disability Living Allowance (DLA), had her personal care payment removed completely and her mobility allowance cut.
The 57-year-old from Musselburgh fell victim to an assessment known as the 20-metre rule where people who can walk one step over that distance are deemed not to require the highest rate of mobility component.
Around 15,000 people live with MS in Scotland, with nearly one in six facing the prospect of losing out on PIP support because of the 20-metre rule.
Leitch said: “I can only describe the PIP assessment as the worst possible process. I felt like it had no bearing on or relation to my condition and it had a material impact on my health.
“Not a single question was asked about the way MS affects me or what impact it has on my life.
“I was asked things like ‘did you go to a ‘normal’ school?’ and ‘do you have access to internet banking?’ – things that have nothing to do with my health. The 20-metre rule is completely unfit for purpose.
“MS is a fluctuating condition and my symptoms change every day. Even on days when I can walk 20 metres with a walking aid, there’s a chance I might fall and it doesn’t account for fatigue or the exertion of doing so. In any case, the assessor didn’t see me walking at any point.
“I was asked one question as to how long it would take for me to walk 20 metres, with no follow-ups or clarifications.”
MS damages nerves in the body and makes it harder to do everyday things, like walk, talk, eat and think.
Symptoms of the illness include fatigue, vision problems, muscle spasms, numbness and tingling.
Scottish Labour MSP Neil Findlay said: “The assessment process for PIP is crude, degrading and without any real understanding of how people with MS live.
“With the Scottish Parliament getting powers over these benefits we must see a new system developed that has respect, dignity and compassion at its heart – we cannot allow a repeat of the dreadful, failed system we see at present.”
Morna Simpkins, director of MS Society Scotland, said: “We’ve long known about the enormous harm caused when PIP takes vital support away from people with MS. Not only does the process lack respect for people and their lives, but arbitrary and nonsensical conditions like the 20-metre rule can deprive people of vital support.
“We welcome commitments by the Scottish Government to reform the assessment system when it becomes devolved, but it is essential that the 20-metre rule is scrapped to ensure that people with MS get the support they need.
“MS can be painful and exhausting. It shouldn’t be made harder by a welfare system that doesn’t make sense.”
Social security secretary Shirley-Anne Somerville confirmed the Scottish Government’s replacement for the Personal Independence Payment starts early next year and said they were committed to “significantly reducing” the need for face-to-face assessments.
Somerville said: “We know the UK Government assessment system for disability benefits causes stress and anxiety and acts as a barrier to disabled people getting the benefits they are entitled to.
“Our focus will be on getting decisions right first time and we will have a reformed assessment process, delivered by Social Security Scotland, not the private sector.
“A face-to-face assessment will only take place where there is no other way of obtaining the information required to make a decision.
“When it is required there will be flexibility in appointments and we will offer audio recording as standard to improve transparency and accuracy.”