The DWP’s decision not to pay Disability Living Allowance to children in hospital long term was defeated in the Supreme Court thanks to one brave dad
At Alder Hey specialist children’s hospital in Liverpool, five-year-old Ethan Wheeler is flying down a colourful slide. The hospital and its parents’ centre, Ronald McDonald House, is as familiar to him as his home 70 miles away in Shrewsbury.
Born three months premature at his local hospital, Ethan spent the first 18 months of his life here, including three months in intensive care, and six months in a high-dependency unit. Now, regularly returning as an emergency admission, he is greeted like an old friend by doctors and nurses.
“Because of being born so early, Ethan had necrotising enterocolitis which led to him losing most of his bowel,” his mum Mell, 36, explains. “He has learning difficulties. He is non-verbal and has mild cerebral palsy. He has to be fed intravenously by me at home, and he often suffers with septicaemia and a host of other complications.”
Even so, at the beginning of Ethan’s life, his frightened, struggling family weren’t entitled to any Government support. A brutal Department for Work and Pensions ruling stated that children who had never been home from hospital, or who had spent more than 84 days as an in-patient, should not receive Disability Living Allowance.
Last year, parents Lynette and Craig Mathieson won a four-and-a-half year fight against this injustice in the Supreme Court in the name of their son Cameron, who died aged five at Alder Hey.
Thanks to Cam’s Law, which came into effect just a few days ago, over 1,000 parents have already been given the support they desperately need.
Today, Mell and Ethan have returned to the hospital to thank Craig. “You don’t need to thank me,” he says. Ethan’s big smile is all Craig needs to see.
Real Britain first took up Craig’s campaign two years ago.
While Cam had been bravely battling a rare combination of Cystic Fibrosis and Duchenne Muscular Dystrophy, his parents told me they had come close to destitution. In 2010, desperately sick Cam spent his 84th night in hospital, meaning their state support was abruptly cut off. In total, their son had spent over three years of his life at Alder Hey.
“We came close to destitution, and being on the street,” Craig, from Warrington, told me. “I will fight this policy in every court in the land until the Queen herself tells me there is nothing more I can do.”
I believed him.
Cameron had died in 2012, but his parents were carrying on his fight for other families.