Up to one in ten of all people living with multiple sclerosis (MS) in the UK could lose the highest rate of support under Personal Independence Payment (PIP), despite qualifying for it under the old system, the MS Society has estimated. The figures, published today by the charity, reveal the severe extent of potential benefit cuts for people living with MS.
It’s estimated that more than one thousand people with MS have already had their benefits downgraded since the Government introduced PIP to replace the Disability Living Allowance (DLA). Under DLA, 93% of people with MS who received the benefit were awarded the highest rate of the mobility component. But of the 4,349 who have so far been moved over to and awarded PIP, only 70% have received the equivalent rate.
MS is an incurable, progressive and debilitating condition. For many people living with MS, the impact of their condition is likely to get worse over time, not improve. With more than 80% of people on DLA still to be moved onto PIP, the MS Society anticipates that up to 10% of the 100,000 people living with MS in the UK could eventually lose access to the enhanced rate of mobility.
Michelle Mitchell, Chief Executive of the MS Society, said: “Changes to disability benefits assessments have already had a devastating impact on the lives of too many people living with MS. It’s absurd that those who were once deemed to be in need of this crucial support now face having it reduced or taken away. We’re deeply concerned by the staggering figures of how many could lose out.
“Living with a neurological condition like MS can cost up to an additional £200 a week. People with MS have told us financial support from disability benefits is vitally important for them – many of those who use it for a Motability vehicle or electric wheelchair say they rely on it to continue to be independent, travel to work or medical appointments, or pick their children up from school.”
Tightening of the eligibility criteria under PIP means that more people with MS stand to lose this support. Under PIP, if someone can walk more than 20 metres, even with walking aids, they will no longer qualify for the highest rate of support. Previously, 50 metres was often considered to be the rule of thumb for entitlement to the higher rate under DLA
Michelle Mitchell continued: “Changes to the eligibility criteria for mobility support under PIP were introduced with no evidence to show why it should be reduced. These changes must be reversed to reflect the barriers people with MS face. Having a disability like MS is hard enough; it shouldn’t be made harder by a benefits system that doesn’t make sense.”
David Trotter, a 32-year-old IT worker from Midlothian, Scotland, was forced to hand back his Motability car earlier this year after being moved onto PIP. David was diagnosed with MS 11 years ago and started receiving DLA two years later. The payments helped him with the day-to-day extra costs of living with a disability, as well as allowed him to get a Motability car.
But after an assessment for PIP in March, it was decided he no longer qualifies for the higher rate of mobility, despite having a chronic, disabling condition which badly affects his ability to walk.
Since having his car taken away, David has been unable to travel to hospital appointments, his job (which is 15 miles away), the shops, and generally to get out and about. He says the combination of buses and trains is more than he can physically cope with: “My nearest bus stop is 150 metres away, but they’ve said I can walk no further than 50 metres. I don’t quite understand what they want me to do.
“This new benefit has ironically taken “personal independence” away from people like myself and will have an effect on many people with MS for years to come. I have already started to feel that confidence I have built up over the years slip away from me, and trying to deal with the mental aspect of this is proving to be extremely difficult.” David is challenging the decision and his appeal will be heard in Edinburgh next month.
The MS Society is encouraging people with MS to share their experiences about PIP to the Government’s second independent review, via its website: http://bit.ly/2b0ZA92
A report published by the MS Society last September, MS: Enough, found that disability benefits are vital to help people with MS to live independent lives. Of the 809 respondents who used the Motability scheme, 20% said the scheme had enabled them to stay in their job and almost a third (31%) agreed the scheme enabled them to continue caring for their children. Over one in ten (13%) said they would be unable to continue working if they lost their vehicle. In addition, 18% said their partner would have to give up or reduce hours of work to assist them.
MS affects more than 100,000 people in the UK. MS is a condition of the central nervous system and is unpredictable – one day you’ll be fine, the next you might lose your sight or be unable to move. People typically start experiencing symptoms in their 20s and 30s, which include fatigue, sight loss, incontinence and disability.
For more on the MS Society’s MS: Enough campaign, visit www.mssociety.org.uk/msenough