National charity launches campaign for COVID-19 answers

PRESS RELEASE

Action Duchenne, the first national charity established to support those living with Duchenne muscular dystrophy (DMD), has launched a campaign demanding Covid-19 answers from government. 

Life expectancy for those living with the muscle wasting condition is typically 25-30 years and as part of the highest risk group, have been shielding at home.

Recent public announcements about the path out of the current Covid-19 restrictions give little reassurance to the families we support, stating only that shielding should continue until the end of June and likely beyond.     

Action Duchenne has written to Prime Minister Boris Johnson, the Secretaries of State for Health, Education and Work and Pensions, and to their counterparts across Wales, Scotland and Northern Ireland. 

The charity has demanded far greater clarity, a more nuanced approach for those shielding and who have life limiting conditions and to be provided with the opportunity to review the guidance with government officials.   

Chief Executive, Florence Boulton, says:

“Duchenne is a devastating life limiting condition.  Our families have been shielding for almost ten weeks now and do not have the luxury of time.  They want to know when they can take their children outside of their home, so long as social distancing is observed.

They need to know what will happen to the range of medical appointments which they need.  We have been told that ventilator filters have been denied to some of those who have DMD as they were deemed to be essential for the coronavirus response.

Children living with DMD are likely to be among the last to return to school in the United Kingdom.  At the moment, the lives of those who have DMD are on hold, as they continue to weaken and their mental health suffers. 

Our community urgently needs more clarity from decision makers. We have had a fantastic response from our community to our #weneedanswers campaign and urge the wider population to join us in demanding answers from governments across the United Kingdom.”