FOR most people, the news that you have Parkinson’s Disease is earth-shattering enough. The incurable illness progressively damages the brain over many years, causing tremors, slow movement and stiff muscles. It can leave sufferers depressed, bring on problems with sleeping and, inevitably, an inability to work. But for sufferer Kevin Stannard, 62, the worst was yet to come.
In 2010, he was made redundant from the blind-fitting firm he had worked for for 40 years due to his worsening symptoms. He was forced to begin claiming disability benefits or Employment and Support Allowance. For the next few years, he and his wife, Amanda, struggled financially as part of the ESA Wrag group – which was set up especially for people who may be fit for work in the future.
Unfortunately for Kevin and Amanda, 60, from Colchester, the allowance was not enough to cover the cost of living. “Being part of this group meant they deemed him well enough to go back to work, meaning he had to take the time and money to go to meetings – even though he was never well enough to work,” said Amanda.
“We couldn’t afford to pay bills or buy food, so we were forced to live off credit cards the whole time and we’re still paying them off now. “It got to the point that we were going to lose the roof over our heads as we couldn’t pay the rent. “Luckily our local councillor stepped in to help us at that point.”
The stress of working while dealing with the “confusing” process of claiming ESA for her husband led to Amanda suffering a minor stroke, which meant she also had to give up her part-time work as a director with a housing association. She said: “With Parkinson’s it is difficult as on the surface you don’t always see how awful it is but there was just not way he could work.
“We had to move house so we could have separate bedrooms – he would have night terrors and lash out because of his symptoms. “The amount we get is nowhere near enough to live. “Kevin was deemed fit to work so we got no money from ESA for a long time, £400 month from the Disability Living Allowance and I earned around £60 a week from work.”
The struggle experienced by Kevin and Amanda is not uncommon, according to the latest findings of the Disability Benefits Consortium, a national coalition of more than 80 different charities and organisations.
A survey of people claiming ESA shows 60 per cent of 1,755 respondents say the amount they receive is not enough to live on. When asked about the consequences of this, 62 per cent said they struggled to stay healthy, while 49 per cent said they could no longer pay their bills.
Amanda added: “The whole process of ESA is so confusing. “I took it on because it was too difficult for Kevin to deal with alongside his Parkinson’s.