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Speaking out to end the 20 metre rule in Scotland

We’ve been speaking to you about the Scottish Government’s draft regulations for a new devolved social security system. In this blog we share what one woman living with MS had to say.

In December 2020 the Scottish Government published draft regulations for a new devolved social security system.

Personal Independence Payment (PIP) will be replaced by an Adult Disability Payment (ADP), which has some significant changes from PIP. These include the scrapping of functional assessments, which means you’ll no longer be asked to carry out physical tasks to support your claim.

But the 20 metre rule hasn’t been scrapped

Disappointingly, ADP will continue to use criteria from the PIP system, including the discredited 20 metre rule. Under this rule, if you can walk one step over 20 metres you won't qualify for the higher rate of mobility support.

Here’s what one woman from Scotland living with MS has to say about the new system. She’s asked to share her story anonymously.

Stress and the 20 metre rule

“Anyone with MS, and the experts, will tell you that you can’t know from one day to the next what you’re going to be like.

“One day you may be able to walk 20 metres but you might not be able to walk back, some days you can’t walk even five metres. That can change from day to day or morning to afternoon.

“The 20 metre rule is one of the main causes of stress in the application and I find stress is a huge contributor to causing my relapses – it’s not fair.

“The rule needs to be cut now, not in a couple of years, before it gets off the ground. It’s not a fair playing field for anyone with a neurological condition.

“It’s not dignified and it’s not fair and the Government said that when assessments moved to Scotland that they were going to be."

Made to prove you’re ill

“I receive the high level mobility payment [of PIP] but the process of actually getting that was dreadful.

“For any neurological condition and especially for MS it’s not easy to get a diagnosis. They don’t just give them out willy-nilly, you have to go through a lot of, sometimes painful, tests like lumbar punctures, MRIs and blood tests. It’s not something you can pull the wool over someone’s eyes about so why makes us prove we’re ill?

“If [in Scotland] they’re able to do a consultation in which they’re not trying to make you prove how ill you are by making you do things that you can’t, then that’s a start.

“Cutting down the number of assessments that need to be made after taking supporting evidence is a good idea. I’ve been awarded PIP for 10 years now so it’s not so often that I have to be reassessed, but some people aren’t getting PIP because their assessment has cut their support."

A better process?

“There are some people who had been awarded lifelong DLA [Disability Living Allowance, which PIP began replacing in 2013] and now don’t get support through PIP. So what’s changed? It’s not that they’ve got better. For a lot of people that lack of support comes down to the 20 metre rule.

“The Scottish Government’s assurances that other changes will mitigate the 20 metre rule just raise more questions. It feels as though they are using semantics to keep the 20 metre rule in. If people with certain conditions, like MS, wouldn’t have to answer the 20 metre question then in theory it seems like a compromise that could work.

“It isn’t a fair, level playing field for those with MS. The Scottish Government is saying, you may not need to have a consultation [a discussion to gather further information] so if you fall in the majority then you are fine. If, however, you fall in the minority who will be consulted then you’re going to come up against those criteria.”

Read more about the Scottish Government's proposed changes

Have your say

As a community we have the opportunity to say what we think of the draft plans by submitting a response to the Government’s consultation.

Would you like to share your views and experiences with us?

Read the consultation in full

Send us your views by email, phone call or in a group discussion with others. Get in touch with us at [email protected] or call 07554 116 108.