'Barbaric, cruel and discriminatory'. That’s how a mum living with Multiple Sclerosis has described a new rule, proposed by the Scottish Government, which disqualifies anyone who can walk further than 20m from the higher rate of mobility benefits.
Amy Newton, who was diagnosed 11 years ago with relapsing remitting MS, is backing the MS Society Scotland’s call for the scrapping of the 20-metre rule – part of the new Adult Disability Payment (ADP) assessment process.
It comes as charity MS Society Scotland renews its plea for the “arbitrary and nonsensical measure of mobility” to be dropped from the new benefits scheme, which started to replace Personal Independent Payment (PIP) in Scotland last summer.
The rule states that people with disabilities who can walk one step over that distance do not qualify for the higher rate of mobility support. The Scottish 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 now urging people living with MS to respond to the consultation and demonstrate to the government why the 20m rule is “an unacceptable way to assess mobility.”
Amy, 45 – who was diagnosed with the degenerative disease at the age of 34 – has been co-ordinator of the MS Society’s Fife local group for several years. She hasn’t yet switched to ADP, and receives the enhanced rate for the mobility and daily living components of PIP.
She said: “I think the 20-metre rule is barbaric, cruel and discriminatory. Why do I have to prove that I’m ill? You know what MS is, you can’t make up MS. If you’ve got the scans to prove it, why should you need to prove how it’s going to affect you?
“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. It should be enough for a doctor to confirm that someone has MS or another chronic illness.
“Being able to walk 20 metres doesn’t do anything. It doesn’t give you independence. Where do they want you to go in 20 metres? What are they trying to say you can get to in 20 metres?
“Someone might be able to walk 20 metres – but then they might not be able to walk back. Or they might be able to walk 20 metres – but what happens if their bus stop is 25 metres from their house? If you walk 20 metres to the bus stop and get into town, you might not have any energy left to walk around the shops so what’s the point?
“Or, 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. Because you have to push yourself, and you end up suffering for it and feeling worse. And then you won’t be walking at all for the next few days after that.”
Mum-of-three Amy – who has created an ‘MS Kit’ that helps demonstrate what it can be like to live with the condition – continued: “I’ve got no balance, that’s what’s wrong with my mobility. 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?
“I’ve got my sticks for my normal days, crutches for the not so good days, a wheelchair for crappy days and then I’m in bed when my MS is the worst. So, I have four levels of mobility. But it doesn’t go in order from one to the other, it can jump around.
“Emotions can impact mobility as well. If you’ve had an emotional time of it, that can increase fatigue and then it becomes an effort to do anything. You then have to force yourself to do even ‘normal’ things, which impacts the fatigue even more. It’s a vicious circle.”
Said Amy, of Dairsie, Fife: “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.”
The Government has said everyone in Scotland currently in receipt of the Department for Work and Pensions’ (DWP) PIP will have switched over to ADP, which is managed by Social Security Scotland, by summer 2025. Some people in Scotland who receive Disability Living Allowance (DLA) will also be transferred to ADP from this year.
MS Society Scotland maintains that the 20 metre rule has failed people living with the condition. As a result. many people have lost vital financial support – and their independence.
In 2021, shortly after draft ADP regulations were published, MS Society Scotland and fellow charity, Neurological Alliance of Scotland, launched a petition calling for the 20 metre rule not to be included in the final version. It was signed by more than 3000 people.
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.”
A Scottish Government spokesman said: “We have made several improvements to Adult Disability Payment over Personal Independence Payments, the benefit it replaces.
“The eligibility rules for Adult Disability Payment have remained largely the same as under PIP while people’s payments are transferred from the UK Government to Social Security Scotland by 2025. We cannot create a two tier system, while case transfer takes place.
“However we recognise that there is considerable interest from disabled people and stakeholders about the eligibility criteria for the mobility component and we are consulting on the eligibility criteria for the mobility component to seek a broad range of views on this matter.”
The spokesman added: “The Scottish Government is committed to beginning an independent review of Adult Disability Payment later this year.” The consultation, ‘Adult Disability Payment: Review of the mobility component’ closes on Tuesday, April 25.
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