Steve Brine MP

for Winchester & Chandler's Ford

07 SEP 2015

MP backs call for support for local families living with devastating condition

Monday 7th September is World Duchenne Day, and Steve Brine is calling for better support for families in the area living with the life-limiting muscle-wasting condition.

The Winchester & Chandler's Ford MP has highlighted 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.

Steve is backing calls for all parents to be offered professional emotional support after diagnosis. He 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' son Luca was diagnosed with Duchenne muscular dystrophy in 2013: Pedro 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."

Steve Brine said: "Speaking to families in my constituency affected by Duchenne, they tell me of feeling overwhelmed, as they try to keep family and working life going. We have seen a good deal of progress in specialist care for boys and young men with Duchenne muscular dystrophy. Yet 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. I will do all I can to ensure that the NHS provides these families the emotional support they need."

Back to all posts


Written Answers — Department of Health: Air Pollution: Housing (17 Nov 2017)
Steve Brine: The World Health Organization's report, ‘Preventing Non-communicable Diseases by Reducing Environmental Risk Factors’, published on 12 September 2017, will be taken into consideration along with the rest of the relevant evidence base when developing cross-government policy. The Department of has recently asked the National Institute for Health and Care Excellence to develop...

Written Answers — Department of Health: Influenza: Vaccination (17 Nov 2017)
Steve Brine: Encouraging take-up of the flu vaccination in people with chronic respiratory disease is primarily a matter for Public Health England (PHE). PHE, in partnership with NHS England, is currently running the national multi-channel campaign ‘Stay Well This Winter’, which encourages people who are most at-risk of preventable emergency admission to hospital to take actions to help them...

Written Answers — Department of Health: Pupils: Diabetes (17 Nov 2017)
Steve Brine: The Department and its arm’s length bodies maintain a continuous dialogue with colleagues across government on a range of issues, including how best to meet the health needs of schoolchildren. It is important that children with medical conditions such as diabetes are supported appropriately. Statutory guidance for governing bodies of maintained schools and proprietors of academies in...


Contact Steve Brine in Westminster

Call your MP in his Commons office on 0207 219 7189 or email steve.brine.mp@parliament.uk

Early Day Motions (EDMs)

Steve Brine does not sign EDMs - click here to read why.

Facebook

Sign up to e-newsletter

Sign up for email updates:

First name: *

Last name: *

Email: *

Postcode: *