The true cost of living with MS in Scotland

For more than 11,000 people in Scotland, living with Multiple Sclerosis (MS) is a daily reality.

By The Newsroom
Tuesday, 10th October 2017, 10:16 am
Updated Tuesday, 10th October 2017, 10:21 am

An unpredictable and incurable condition which affects the nervous system, it can attack suddenly or progress steadily, bringing a range of symptoms including sight loss, incontinence, fatigue and mobility problems.

Sadly, people with the disease also face another reality – making the decision between heating their homes or attending hospital appointments.

For the MS Society Scotland has discovered – following a freedom of information request – that thousands of people with MS have lost millions in benefits since the introduction of Personal Independence Payment (PIP).

Despite previously qualifying for the highest rates of government support, people with MS have found their situation drastically changed.

The charity has calculated that at least £6 million a year has been taken from people with the condition since PIP started replacing Disability Living Allowance (DLA) in 2013.

The FOI shows that almost one in three people (2600) who received the highest rate mobility component of DLA had their payments downgraded or denied after being reassessed for PIP between October 2013 and October 2016.

For those receiving the highest rate for care under DLA, nearly a quarter (800 people) faced cuts under PIP’s equivalent daily living component.

Using the FOI findings, the MS Society has calculated a loss of at least £4,867,200 a year for those receiving the highest rate of the mobility component and £1,141,920 a year for those on the highest rate of care.

Around 80 per cent of people with MS have to stop working within 15 years of diagnosis, meaning they have to rely more heavily on disability benefits.

Some 91 per cent of people living with MS in Scotland currently said they found the process of claiming disability benefits stressful.

Coupled with this nearly one in three didn’t claim the benefits they were entitled at all due to the public stigma.

Genevieve Edwards, director of external affairs at the MS Society, said: “These staggering figures show how PIP is failing some of the most vulnerable people with MS who need the highest level of support.

“It doesn’t make sense that people are losing money they once qualified for when they are living with a progressive condition that will never improve.

“People tell us they aren’t given the opportunity in their assessments to explain what it’s really like to live with MS.

“And what’s more, assessors rarely have enough knowledge about the condition.

“This means significant numbers are getting the wrong decisions about what they’re entitled to, with a potentially drastic impact on their living situation.

“Their only options are to face a lengthy and stressful appeal process or attempt to get by with inadequate support.

“The Government urgently needs to fix this broken system so that PIP assessments reflect the realities of living with MS.

“Having MS is hard enough; it shouldn’t be made harder by a welfare system that doesn’t make sense.”

The MS Society is concerned fewer people are able to access appropriate support under PIP because:

n Assessments are failing to reflect the barriers faced by people with MS due to the unpredictable nature of the condition;

n The eligibility criteria to qualify for the higher rate mobility component arbitrarily changed from 50 metres to 20 metres.

Ange (44) lives in the Scottish Borders with her husband. She was diagnosed with MS in 2000.

Like many living with the disease, the financial impact has hit her hard.

“I was in my 20s when I was diagnosed and my life was ahead of me,” she said.

“I had dreams of getting my degree and having a career. Sadly, MS had other plans and I had to drop out of my studies.

“I tried to work part-time but, after a while, I couldn’t manage it so now I’m reliant on DLA and ESA.

“It’s very obvious that I have an illness which has an impact on my life.

“I need DLA. It enables me to pay for all the extra costs that come with MS, like my Motability car which I use to travel to medical appointments.

“I need to have the heating on all the time because I really feel the cold, especially if I’m tired, so my energy bills are higher. When my benefit was stopped I had to consider if I could afford to turn the heating up.

“I cut back on my shopping and I was late paying my bills. The stress and anxiety triggered a spiral into depression.

“However, I was determined to challenge the DWP so I got in touch with my MP. As soon as he got involved, everything changed.

“The DWP couldn’t apologise enough. It awarded me my claim – this time indefinitely – and backdated my payments.

“There seems to be an underlying assumption that benefit claimants are scamming the system but I have a degenerative illness and there is no cure.

“It doesn’t cost anything to treat people like human beings.”

Through its MS: Enough campaign, the MS Society is calling on the Government to make sure people with MS can rely on support when they need it.

Visit for further information.