Benefit change leaves MS sufferer ‘exhausted and fearful for future’
The MS Society said many of its members have been disadvantaged by the new 20-metre walking test rule.
A Northern Ireland woman who suffers from MS says the change of a key benefit has left her exhausted and fearful for the future.
Melissa Leavy, 18, from Downpatrick, spoke out as the MS Society released new research which finds the change from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) is costing the health service an least an extra £7.7m a year.
The MS Society has also found that people suffering from the condition have been losing vital support since PIP was introduced in Northern Ireland in 2016.
The charity said many of its members have been disadvantaged by the new 20-metre rule, a walking test used to test determine eligibility for the higher rate of mobility support.
Under DLA the distance used in the test was 50 metres.
The MS Society has found a drop from 94% to 66% of those who qualified for the higher level of support from DLA to PIP.
Ms Leavy was among those whose support has been cut after she was reassessed for PIP.
“I have to get a taxi to and from college five days a week as the closest bus stop is too far from my home for me to walk to,” she said.
“DLA helped to pay for this but now mum and dad will have to help me.
“I have to walk to class once I get to college, which is approximately 40 metres.
“I am fatigued once I do this and have to rest before I can begin the day but PIP disregard this information as it does not tick their 20-metre box.”
Ms Leavy said she fears becoming more isolated if she loses her Motability car in which she had been planning to learn to drive.
I feel I am being disadvantaged for having a disability that is progressive and incurable Melissa Leavy
“I have such little independence as it is, and this will isolate me even more as I move into adulthood,” she said.
“We use the car to attend all my appointments and scans in the hospital which is 30 miles away and also to drive to the clinic miles away for blood tests.
“I need to attend these appointments as my treatment has very high-risk side effects and requires regular monitoring.
“DLA recognised my condition as progressive and awarded me indefinitely, but I no longer have that safety net and I feel I am being disadvantaged for having a disability that is progressive and incurable.”
Another MS sufferer, Rodney Ashe, 44, from Belfast, also criticised the 20-metre rule as “cruel”.
“It has absolutely no use when it comes to fluctuating and progressive conditions like mine,” he said.
“On a good day I could walk maybe 30 metres, on other days I couldn’t get 20 metres without stopping for five minutes.”
“At my assessment, I found the tasks and the questions physically demanding and awkward.
“It made me feel angry and frustrated to be asked to perform tasks I couldn’t do or could do differently from day to day.
“My diagnosis, my doctors and my application should have been more than enough.”
The UK survey of people with MS, published on Tuesday, also reveals that of those who lost support when reassessed for PIP, 65% say the transition has had a negative effect on their condition.
It finds that 39% had increased their use of GP services, 39% had to reduce spending on food, 30% reduced spending on treatments or therapies such as physiotherapy and counsellors, while 27% had to borrow money from family or friends.
PIP needs to change, starting with scrapping the 20-metre rule MS Society
MS Society, Northern Ireland director Patricia Gordon said PIP was causing “enormous harm to people with MS”.
“PIP needs to change, starting with scrapping the 20-metre rule,” she said.
A spokesman for the Department for Work and Pensions said: “We introduced PIP to replace the outdated DLA system.
“PIP is a fairer benefit, which takes a much wider look at the way an individual’s health condition or disability impacts them on a daily basis.
“A higher proportion of people with MS receive the highest possible award under PIP than under DLA.
“We work closely with organisations such as the MS Society to ensure that PIP is working in the best way possible, and we recently announced that people with the most severe, life-long conditions will no longer have to attend regular reviews for PIP.”
In Northern Ireland the Department for Communities has responsibility for the benefit.
A spokesman said that under PIP, some 35% of people in Northern Ireland get the highest rate of support compared with 15% under DLA.
“The NI Executive also put in place a number of mitigation schemes to support people who lose out financially as a result of the changes including those transitioning from DLA to PIP,” they added.