The MS Society Scotland has called for a draconian mobility test to be excluded from Scotland's new social security system

A Scottish charity has held a demonstration outside calling for unpopular and arbitrary rules around disability assistance to be scrapped.

MS Society Scotland’s national council, supporters and staff were in Edinburgh yesterday (Thursday 20 February) to state that #20sNotPlenty and demand that the ‘20-metre rule’ plays no part in the incoming Scottish social security system.

Under the current Personal Independence Payment (PIP) system, the 20-metre rule says people who can walk one step over 20m don’t need the highest rate of mobility component. As a result of this, thousands with MS have been stripped of their Motability cars and left trapped in their homes and unable to work, seen their health deteriorate, and been forced to face stressful and lengthy appeals to get their benefits reinstated.

The charity has said this failure to support people with MS doesn’t make sense for the UK Government either – the 20-metre rule is predicted to cost the UK Government £92 million over three years, more than it will have saved by cutting people’s PIP.

Paul Kellas is a member of the MS Society Scotland Council and has secondary progressive MS.

“Simply put, the PIP assessment system has failed and is failing people with MS,” he said.

“There is no appreciation or understanding of either the relapsing-remitting or progressive forms of the condition or how it can fluctuate.

“Many people are being made to feel like walking 20 metres whatever the cost to their wellbeing or symptoms means they shouldn’t get any support. To suggest that if, on any occasions, I or anyone else could walk 20 metres completely misunderstands MS as a condition and is resulting in people losing the support they need.

“The system for re-assessment is overly stressful, complicated and unnecessarily long and intrusive; it took three months from me writing the change of circumstances form to the face-to-face assessment.

“The stress and anxiety the process causes serves directly to worsen symptoms and, as a result, has a negative effect for the people it is supposed to be designed to help.

“It is inhuman and lacks empathy; this process needs to be reformed with a better understanding and consideration for people with all chronic illnesses, not just MS.”

MS Society Scotland visited the parliament with an MS Kit, which gives a rough simulation of a limited number of the symptoms people living with MS can experience, to demonstrate the kind of impact the condition can have on walking any distance.

The kit includes goggles to imitate optic neuritis, gardening gloves for loss of sensation an ankle weights to reflect the common symptom of fatigue.

MSPs leaving First Minister’s Questions were asked to try on the kit and get some small idea of how MS can affect someone’s independence.

MS is a fluctuating condition and symptoms can affect people living with the condition differently from day to day.

Under PIP and the current UK system 94% of people with MS who were formerly receiving the old benefit, Disability Living Allowance (DLA), were getting the higher rate of mobility support, but under PIP this has fallen to just 71%.1

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 urge the Scottish Government to reform the assessment system – including the nonsensical and arbitrary 20-metre rule.

“We have heard pledges that under devolution the system will treat people with respect and dignity and what we have heard from our community is that for that to happen then, simply put, this rule must be scrapped.

“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 PIP 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.”