A mum with multiple sclerosis has branded disability tests to access benefits “barbaric and discriminatory”.
Amy Newton, 45, was diagnosed with relapsing remitting MS aged 34, leaving her feeling severe pain, fatigue and mobility issues.
She is one of thousands backing calls to Scottish Government to scrap the 20-metre walking rule retained as part of the Adult Disability Payment (ADP), the new benefit replacing Personal Independent Payment (PIP) in Scotland.
Claimants that can walk more than that distance would not be entitled to higher rates of support.
Amy, from Fife, questioned why medical records were not sufficient proof for sufferers to receive support.
She said: “I think the 20-metre rule is barbaric, cruel and discriminatory. It’s degrading.
“If you’ve got a chronic illness, a degenerative disease, it’s not going to get better, it’s only going to get worse.
“Life is hard enough as it is without making you jump through hoops. Being able to walk 20 metres doesn’t give you independence. Where do they want you to go in 20 metres?
“Someone might be able to walk 20 metres, but then they might not be able to walk back.
“It could be that walking that 20 metres is going to impact them not only for the rest of the day but for the rest of the week.”
Amy described her own condition as fluctuating and unpredictable, with her level of mobility varying from day to day.
She uses sticks and crutches on her better days and uses a wheelchair, but is often left bedbound on her worst days.
She said: “I’ve got no balance. And my leg sometimes stops working.
“I woke up one day a few weeks ago and my leg and my arm weren’t working at all, I literally couldn’t move them. And that was scary because you think, ‘is it going to come back?’.
“It’s one of those illnesses where you look fine and healthy on the outside, but people can’t see what it’s like inside your body.
“When the nerve atrophy strikes, the pain is like barbed wire being pulled through your veins backwards. It’s horrendous. The medication to combat the pain completely floors you.
“With MS, you don’t know when you wake up what it’s going to be like. You don’t know until you get up, if you can get up.”
Amy is co-ordinator of the MS Society’s Fife Local Group and has created an MS Kit that helps demonstrate what it can be like to live with the condition.
She hasn’t switched to ADP yet and receives the enhanced rate for the mobility and daily living components of PIP.
She fears having to undergo the tests and said it “would be absolutely frightening to prove that you’re ill”.
The Scottish Government has said those getting the Department for Work and Pensions’ (DWP) PIP will be switched over to ADP, which is managed by Social Security Scotland, by summer 2025.
The government has launched a public consultation into the mobility component of ADP, which will form part of its review into the new benefits system later this year.
MS Society Scotland is urging people living with MS to respond to the consultation and demonstrate their opposition to the 20m rule.
Morna Simpkins, director of MS Society Scotland, said: “The 20-metre rule is an unfair and unacceptable method of assessment. It punishes people with fluctuating health conditions such as MS, which is unpredictable and different for everyone.
“The Scottish Government has an opportunity to build a world-leading social security system that gives disabled people in Scotland, including the 15,000-plus living with MS, fair access to the benefits they need and deserve. Currently the 20 metre rule is stopping that happening.
“We urge everyone living with MS in Scotland to respond to the consultation and show the government why it needs to urgently update the mobility component of ADP.”
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