People with degenerative diseases are being put under “extra stress” by having to undergo reassessments of their health so they can continue to receive benefits, say campaigners.
Currently, anyone who is diagnosed with a medical condition that will continue to get worse only has to undergo one test to determine if they are entitled to Employment Support Allowance.
But, anyone who was assessed before a rule change in September, has been told they must undergo a new assessment to make sure they continue to qualify.
The MND Association has launched a petition calling on the Government to exempt people with motor neurone disease (MND) from having to be routinely reassessed for disability payouts.
MND, also known as ALS, is a fatal and rapidly progressing disease that affects the brain and spinal cord.
It attacks the nerves that control movement, and those who are diagnosed are eventually left unable to walk, talk or swallow.
A third of people who are diagnosed with MND die within 12 months of diagnosis. Some, like Stephen Hawking, live on for many years.
Stephen Hawking has motor neurone disease
Susie Rabin, head of policy and campaigns at MND Association, told Sky News they are “very concerned” that people with MND currently in receipt of benefits will have to be reassessed “to establish that they are still terminally ill.”
“We think that’s a little bit bonkers,” she told Sky News.
“It’s extra stress and trauma being put on people at a time when they just really need to carry on having support,” Ms Rabin added.
“If you have an illness like MND, it will not have got any better.”
MND was the subject of a global campaign in 2014, the ice bucket challenge, which saw people tipping buckets of ice cold water over their heads and nominating others to do the same.
It raised more than £7m for the MND Association in the UK, and $115m for the ALS Association in the US.
Liam Dwyer, 54, suffers from MND, and was sent a Capability for Work questionnaire twice this summer.
He uses a wheelchair and has trouble speaking, but he spoke to Sky News via email.
“I had to retire from work after two months,” said Liam, who was a building manager with a large building company.
Liam Dwyer has been called for reassessment twice this year
“It was unsafe to stay working on site after two falls, and my speech was getting slurred. I was asked by a person on site if I was still drunk as it was an early Monday morning.”
“The DWP has sent me out a 24-page from to fill in and because I can’t hold a pen it’s another job for my wife.”
He said if the Department for Work and Pensions looked at what MND was, they would not need to reassess people who have it.
In September, the Government changed the rules on who did and did not need to undergo regular assessments to receive disability benefits.
Previously, anyone who claimed benefits was subjected to medical tests every six months to determine whether they were fit for work.
Afterwards, people with severe lifelong conditions like MND and Parkinson’s disease were told they would no longer need to be routinely assessed.
But those who were assessed before the rule change, regardless of whether they were judged unable to work, were told they must still endure a test.
Warren, 68, was diagnosed with MND in August 2016.
Warren worked as an insurance broker
His daughter Katie, 34, told Sky News there’s a “massive lack of understanding” of the disease.
“It is heart breaking to watch him deteriorate and to know that there is never going to be a happy ending.
“This isn’t made any easier by the existing bureaucratic processes in place and lack of understanding of this cruel condition.”
Parkinson’s UK also says it too is concerned people with the disease will have to deal with the “stress and anxiety” of a reassessment.
Phil Reynolds, senior policy and campaigns adviser at Parkinson’s UK, told Sky News: “We fear that many people with Parkinson’s still won’t be protected from the trauma and indignity of pointless ESA assessments.”
A DWP spokesperson told Sky News: “We’re making sure that people with severe health conditions or disabilities who are unlikely to ever be able to move into work, no longer need to attend routine assessments to receive the benefits they’re entitled to.
“We’ve worked closely with healthcare professionals, disability charities and a number of other organisations to develop clear criteria and guidance.
“We have apologised to Mr Dwyer for the clerical error which led to him receiving unnecessary reassessment letters earlier this year.”