Published: 00:01, 30 April 2018
A campaigner who gave up work to look after her husband has hit out at “inhumane” rules which say he must reapply to receive disability benefits.
Katy and Mark Styles’ lives were turned upside down when Mark was diagnosed with a rare form of motor neurone disease called Kennedy syndrome - a progressive and degenerative muscle wasting disorder.
Mrs Styles, from Chartham, was working as a geography teacher when she left her 20-year profession in 2014 to care for her husband who, at the same time, was forced to give up his education role at Kent County Council.
“Mark was forced to retire at 46, and although our income had fallen off a cliff, our bills continued to increase,” she told the Gazette.
“We often have to travel miles and miles to receive care and have had to adapt our home, which was paid for with savings we will never be able to replace.
“Mark has gone from being physically active to depending on crutches and a wheelchair to get around. At night, he breathes with the help of a machine that supports his weakened chest muscles.”
But despite this and the progressive nature of the disease, Mr Styles will need to complete a 50-page form and face an assessment after receiving a letter saying his Disability Living Allowance was ending and he would need to reapply for Personal Independence Payment (PIP.)
The process has been further complicated as the couple will need to collate a vast amount of medical evidence to support the application.
Mrs Styles, 50, explained: “We have a few weeks to gather all the medical evidence which is often from different specialists in different departments. It’s inhumane that we have to go through this, and even then there is no guarantee he will be awarded PIP.
“It’s so stressful. Nobody should have to go through this.”
"It's inhumane that we have to go through this and even then there is no guarantee he will be awarded PIP" - Katy Styles
Mrs Styles has been supported by Canterbury MP Rosie Duffield, and has also received support from charity MND, but says others can be left to work out complex forms for themselves and want things to change.
In the meantime she continues to campaign for carers rights and has launched a petition to get a carers strategy published by the government.