A dad from Sheffield campaigning to speed up the availability of muscular dystrophy drugs has accused the NHS of ‘keeping quiet about funding’ for the medication.
Mark Creswick’s son Harley, aged six, has Duchenne muscular dystrophy, a rare progressive disease which causes muscles to weaken over time.
In 2013 the dad, from High Green, gave evidence to a parliamentary inquiry, telling committee members his child was enduring a long wait for treatment.
Last week, NHS England released its rare diseases strategy, but did not provide information on how high-cost drugs and care would be funded in future.
A special fund for treating rare conditions was recently merged into the overall health service budget.
Mark, who is backing the work of the Muscular Dystrophy Campaign charity, said: “Harley’s condition is affecting him more as he grows and he now uses a wheelchair. Unless we find a treatment to stop it, his muscles will continue to weaken and waste.
“Having to wait while the NHS figures out all the funding is a huge worry.
“We need to be ready for when a treatment does become available.”