Today on World Duchenne Day (7 Sept), local MP Andy Slaughter is calling for better support for families in Hammersmith living with the life-limiting muscle-wasting condition.
He highlights Muscular Dystrophy UK’s warning that parents are hearing their children have Duchenne muscular dystrophy over the telephone, despite calls by health professionals for better psychological support.
The charity tells how nearly a quarter of parents say they found out their child had the devastating condition, Duchenne muscular dystrophy, over the phone. And more than a third of families received no follow up emotional support.
Andy Slaughter MP is backing calls for all parents to be offered professional emotional support after diagnosis. Andy also wants to see better sign-posting to charity-run helplines and support services, by health professionals.
Around 100 children are born every year with Duchenne muscular dystrophy, which causes muscles to weaken and waste, leading to increasingly severe disability. The condition affects muscles used to move, meaning most children will use a wheelchair before the age of 12. It also affects the heart and vital breathing muscles; few of those born with the condition currently live to see their 30th birthday.
Pedro Fernandes, whose son Luca was diagnosed with Duchenne muscular dystrophy in 2013, said:
“Luca was just three years old. Utterly devastated, it was like a death sentence had been handed down for our son. We were left to spend long periods with no information, and we were in no state to chase for it. You make yourself strong for your child, you have no other choice. However, no family should go without emotional support like we did. There is nothing more to say, families need more support at diagnosis.”
Andy Slaughter MP said:
“This awareness day is a vital chance to remind people about how this devastating condition is effecting thousands of families in the UK. I will do all that I can to make sure that the NHS support these families anyway they can.”