‘Broken system’ taking millions in vital benefits from people with MS

New figures show that thousands of people living with multiple sclerosis (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. Following a freedom of information (FOI) request, the MS Society 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 (2,600) 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 the care part of 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 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.

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. 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, 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.”

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

  • Assessments are failing to reflect the barriers faced by people with MS, such as the unpredictable and fluctuating nature of the condition; and
  • The eligibility criteria to qualify for the higher rate mobility component arbitrarily changed from 50 metres to 20 metres, not accurately reflecting people’s needs.

The Department of Work and Pensions has not provided any evidence to show that those people losing out actually have less need for support. There are at least 38,000 people with MS yet to be reassessed for PIP. Following the current trend, an estimated minimum of 11,000 more could still lose out on the mobility component alone, meaning a further £20 million per year could be taken away from them by the time PIP is fully rolled out.

MS affects more than 100,000 people in the UK. It’s unpredictable and can cause problems with how people walk, move, see think and feel. Living with a neurological condition like MS can cost up to an additional £200 a week. 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, without the constant fear of having it taken away. See more at www.mssociety.org.uk/ms-enough

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