Henry Smith MP has given his support to Muscular Dystrophy UK and their work calling for better support for families in Crawley living with the life-limiting muscle-wasting condition on World Duchenne Awareness Day (Monday, 7th September).
The campaign 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.
Henry said;
“While there has been a good deal of progress in specialist care for boys and young men with Duchenne muscular dystrophy, we need to make the right support for mental health and wellbeing a priority too.”
“World Duchenne Awareness Day offers a reminder of the impact this condition is having on thousands of families in the UK.
“The UK Duchenne population is put at 2,500; Muscular Dystrophy UK have told me that on this basis there would be 35 people affected by Duchenne muscular dystrophy in West Sussex.”
The charity tells how nearly a quarter of parents say they found out their child had Duchenne muscular dystrophy over the phone. More than a third of families received no follow-up emotional support.
Henry is backing calls for all parents to be offered professional emotional support after diagnosis, and is urging for better sign-posting to charity-run helplines and support services, by health professionals.
Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK, commented;
“We’re very grateful for Henry’s support for individuals and families affected by this devastating condition.
“Too many families have been left abandoned and alone to cope with what can be a bombshell at diagnosis. This void of emotional support is having a detrimental impact on people’s lives and their mental health and well-being.
“Families are not being given the right information about charities and others that can help with the feelings of isolation. We need to recognise the emotional impact of learning a child has Duchenne muscular dystrophy and provide support to these families at a very vulnerable time.”
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.
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