Thousands of people living with multiple sclerosis (MS) have lost millions of pounds in benefits since disability benefits system was changed four years ago, new figures show.
More than £6m a year has been taken away from people with the condition since the introduction of Personal Independent Payment (PIP), as despite previously qualifying for the highest rates of government support, sufferers have been told they are no longer eligible for it, according to responses to a Freedom of Information request by charity MS Society.
The figures show that almost one in three people – or 2,600 – who received the highest rate mobility component of Disability Living Allowance, which PIP has replaced, had their payments downgraded after being reassessed in the three years up to October 2016.
Of those receiving the highest rate for the care component of DLA, nearly a quarter (800 people) faced cuts under PIP’s equivalent “daily living” component.
The findings amount to a loss of almost £5m a year from all those receiving the highest rate of the mobility component, and £1,141,920 a year from those on the highest rate of care.
There are at least 38,000 people with MS yet to be reassessed for PIP, indicating that in line with the current trend, an estimated minimum of 11,000 more could still lose out on the mobility component alone. This would mean a further £20m per year could be taken away from them by the time PIP is fully rolled out.
The Department of Work and Pensions has not provided any evidence to show that those people losing out have less need for support.
In light of the findings, MS Society warned that mobility assessments were failing to reflect the barriers faced by people with MS, such as the unpredictable and fluctuating nature of the condition.
It highlighted that the new eligibility criteria to qualify for the higher rate mobility component did not accurately reflect people’s needs, having “arbitrarily” changed from 50 metres to 20.
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.”
“Significant numbers are getting the wrong decisions about what they’re entitled to, having 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.”
IN response to the findings, a DWP Spokesperson said: “Under PIP 36 per cent more Multiple Sclerosis claimants receive the highest rate of support than under DLA. We recognise symptoms of Multiple Sclerosis can fluctuate over time, and regular reassessments mean we can ensure people with degenerative conditions get the help they need as their condition changes.
"Assessments consider illnesses which affect sufferers during the majority of days in a year, rather than just on someone’s 'best days' or assessing ability on a single day.”
‘My symptoms worsened, as did my depression’
Yolanda Barker, 45, has lived with MS for over 20 years and received the higher rates of care and mobility under DLA for around a decade, but following her PIP assessment last year she was downgraded to the standard rate for care.
The mother-of-two from Kent, who appealed this decision but was unable to get it overturned, said the change has caused her “a great deal of stress” and caused her symptoms to worsen.
“The financial impact on me and my family has been huge. The whole process took around a year and it caused me a great deal of stress. My symptoms worsened, as did my depression,” she said.
“There were so many things the assessor got wrong or didn’t mention in my report. I tried my best to explain how my symptoms affect me differently every day, but I don’t think he understood this. If your problems don’t fit in their boxes, they’re not taken into account.
“The worst thing is that I’ll face another assessment next year. It constantly plays on mind whether I’ll lose more money or my Motability car, and if I’ll be able to manage.
“Life isn’t going to get any easier for me, yet I feel like I’m being targeted. The system has made me feel like I’m dishonest and that I’m continually being judged. There’s just no let up from it.”
The Independent has reached out to the Department of Work and Pensions for comment.
