MS Society Scotland has stated what it would like to see ahead of the elections this spring

A health charity is highlighting the past failures of social security support for people living with multiple sclerosis (MS) as people across the country look ahead to the Scottish Parliamentary elections.

MS Society Scotland’s first mini-manifesto, of three prior to the elections, is asking prospective MSPs to commit to ensuring that the incoming devolved social security system doesn’t punish their constituents as previous ones have.

The Social Security manifesto focuses on the creation of a world-leading, rights based social security system co-produced with the people who it will offer support.

The charity is asking politicians from all parties to take action should they take seats at Holyrood come May on:

• Scrapping the ‘PIP 20m rule’ and use appropriate assessment criteria
• Providing sufficient additional help to cover the associated extra costs such as heating, transport and disability equipment for people living with MS

• Providing sufficient additional financial support to unpaid carers

MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think. The condition is relentless, painful and disabling.

Research released earlier this year highlighted the high numbers of people diagnosed with MS in Scotland every year with 720 receiving a diagnosis annually.

The charity is using its #LouderForMS campaign to keep issues that affect the over 15,000 people living with MS in the country at the forefront as polls near.

The MS Society’s My MS MY Needs survey in 2019 showed that people receiving benefits are twice as likely to be struggling on their current household income than people with MS who are not in receipt of any benefits. The Covid-19 pandemic will potentially have exacerbated this.

MS Society Scotland is calling for a social security system that makes sense, including the scrapping of the '20 metre rule’ which sets an arbitrary benchmark for higher levels of support with no evidence to back it up, when the devolution of powers is completed.

Draft disability assistance regulations are being consulted upon by the Scottish Government but provisionally include retaining this rule among other criteria.

In the draft regulations the Scottish Government recognises the current assessment criteria are unfair and promises to review them in 2023 once they have been administering the new Adult Disability Payment for a year. The government says this is to ensure that the transition of powers is made safely and securely.

MS Society Scotland director, Morna Simpkins, said: “Everyone living with MS, their family and friends across Scotland has a unique MS story and it’s vital that the proper financial support is available to them.

“The first of our three mini manifestos sets out some of the ways we believe the system can be changed to improve the experiences of people living with MS.

“We have been heartened by the progress made as social security becomes devolved but there is still much work to be done to reach a longer term vision which removes the financial barriers to independent living for people with fluctuating neurological conditions like MS.

“We truly want to see ‘dignity’, ‘fairness’ and ‘respect’ being at the heart of devolved disability assistance as the Scottish Government have promised.

“We want to see a system that our community has confidence in but will always reserve the right to challenge when we believe these principles not being adhered to.

“So while we are pleased to see the need for so many unnecessary assessments being scaled back there remain questions about how retaining the plainly unfair assessment criteria from PIP in the incoming system can lead to a system that works for everyone it is supposed to help.

“We want prospective MSPs to get louder for MS for their constituents as they campaign and commit to being bold for real change should they be elected.”

CASE STUDY

A woman from Scotland living with MS has criticised the outgoing social security system and urged the Scottish Government to scrap illogical criteria currently proposed to be transferred to the new Scottish system.

She did not wish to be identified due to worry that her current social security award might be revoked.

She said: “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 stress is a huge contributor to causing relapses – it’s not fair.

“It 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 they said that when assessments moved to Scotland that they were going to be.

“I receive the high level mobility payment 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 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 which is the longest it can be awarded for so it’s not so often but some people aren’t getting PIP.

“There are some people who had been awarded lifelong DLA [Disability Living Allowance] 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.

“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 certain conditions, like MS, wouldn’t have to answer that 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 Government is saying, you may not need to have a consultation, 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.”