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."

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Steve Brine: Before granting a concessionary price we contact suppliers to ascertain that the product was not available at or below the reimbursement price listed in the Drug Tariff. While a specific assessment was not made as to why this particular product was not available at or below the reimbursement price listed in the Drug Tariff, we are aware of a number of reasons for the pressure in the supply...

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Steve Brine: A funding requirement automatically applies to any intervention, including medical technologies, devices and diagnostics, recommended in technology appraisal guidance issued by the National Institute for Health and Care Excellence, in line with the NHS Constitution.

Written Answers — Department of Health and Social Care: Dental Services (19 Jan 2018)
Steve Brine: Information on the value of units of dental activity is not held centrally in the form requested. It is not, therefore, possible to provide information on the value, average value or the value as a proportion of the health spending of NHS England of contracted units of dental activity commissioned in Bradford South constituency, Yorkshire and Humber and England in each of the last five years.

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