Benefit changes force people with chronic condition to spend less on food
A “senseless and unfounded" rule in the disability benefits system is causing people with multiple sclerosis (MS) to lose support at an alarming scale.
That's the findings of a new report from the MS Society marking the five year anniversary of the introduction of Personal Independence Payments (PIP).
It shows the devastating impact PIP is having on people’s lives.
People with MS have been increasingly losing vital support since PIP began in 2013.
The biggest change has been the introduction of the 20 metre rule, used in assessments to determine eligibility for the higher rate of mobility support.
Under the previous benefit, Disability Living Allowance (DLA), the measure was 50 metres.
Now, if you can walk just one step over 20 metres, roughly the length of two double-decker buses, you won’t qualify for higher level of mobility support. 94% of people with MS who were receiving DLA were getting the higher rate of mobility support, but under PIP this has fallen to just 66%.
In a UK survey of people with MS, of those who had support taken from them in the transfer from DLA to PIP, 65% said the transition had a negative effect on their MS, 39% increased their use of GP services, 39% had to reduce spending on food, 30% reduced spending on treatments or therapies (such as physiotherapy and counselling) and 27% had to borrow money from family or friends.
Analysis by the MS Society shows PIP is also having a staggering knock-on effect on local services.
Based on respondents’ increased use of health services, the NHS across the UK is spending more than an additional £1.8 million a year on GP services and £5.9m a year on hospital accident and emergency services for people with MS who’ve lost support when transitioning to PIP. These figures are projected to rise as more people transfer from DLA to PIP.
Niall Sommerville of MS Society Scotland said: “Contrary to the UK government’s insistence that PIP is meant to help those with the greatest needs, the truth is it’s causing enormous harm to people with MS, with many losing their independence as a result. This senseless and unfounded rule is leading to people with the highest need facing the biggest losses.
“The 20 metre rule was strongly opposed by charities, people with MS and medical professionals when it was first introduced, and we’re still waiting for the UK government to provide any sort of evidence of how it helps those who need support the most.
“Enough is enough; PIP needs to change, starting with the government scrapping the 20 metre rule.”
As part of its MS: Enough campaign, the MS Society is urging people to sign a petition to the secretary of state for work and pensions, Esther McVey, calling on the government to scrap the 20 metre rule.
Amongst other calls to improve PIP, the MS Society wants the government to work with disabled people, charities and healthcare professionals to review and redesign the measure for the higher rate of PIP mobility support.
In the meantime the charity says 50 metre threshold should be reinstated.
The impact of PIP: "It's a brutal system - they made me feel like an unfit mother"
Ayrshire mum-of-one and councillor Laura Brennan-Whitefield has been living with MS for 10 years. The 33-year-old was given a life time award on DLA, however after reassessment on PIP, her award was decreased.
Laura said: “The whole process needs to be changed as it doesn’t make sense for people with a fluctuating condition like MS – especially with the 20 metre rule. Some days I can’t get out of bed because I am in so much pain but other days I would be able to walk more than 20 metres.
“The assessor also brought up how do I take care of my baby – they made me feel like an unfit mother. It has to be better than this for people with long term conditions – it is a brutal system. It is so demeaning and it centres on the things you can’t do rather than what you can do.
“They don’t grasp what the health professionals are saying. I brought along my medical notes to the appointment and I was marked down for being able to hold the medical records.
“There were other comments like “if you can hold a phone at work why can’t you hold a knife at home?” I felt as if I was being punished for working.”
Edinburgh IT worker David Trotter endured a lengthy appeal process after his enhanced mobility award was taken from him.
In 2017 David’s appeal was overturned, seeing him rewarded the higher rate of mobility.
“My assessor had ticked the box saying I could walk no further than 50 metres despite them not observing me covering this distance and me explaining that I can only walk 10 steps before I experience an increase in pain in my legs and arm due to the use of a crutch.
“Under DLA this error by the assessor would still have resulted in me being awarded the higher rate of the mobility component, but due to the 20 metre rule I had to take it to a tribunal to argue that the 10 steps she had written in the notes did not correspond with the points I was awarded.
“The system needs to be designed to take into account that all conditions and disabilities are not the same and so there effects on people cannot be determined from a one size fits all application form and assessment.
“The assessments should be performed by a medically qualified person specific to the condition they are assessing ie neurologists assessing those with MS.”
