COVID-19 has deeply affected the families we support. Most people living with Duchenne muscular dystrophy have been classified as clinically extremely vulnerable and as a result are shielding.
The government’s public announcements and guidance have largely ignored the needs of those living with complex conditions, instead simply advising shielding with no clear exit plan. This is causing considerable stress and upset for our Duchenne community.
What we want to achieve
Duchenne families want to know when they will be able to take their children out (so long as social distance is observed) to the park or even for a short drive. They want to know what will happen to the range of medical appointments they need to attend to keep well. They want to know about the education of their children, if siblings without DMD should return to school or stay at home. As carers, parents want to know about their employment rights during extended shielding.
The government so far had ignored these concerns, and we want to give our families answers.
Update
We’re looking forward to working with the Scottish government as their work on shielding progresses.
What we are doing
We are sending letters directly to Prime Minister Boris Johnson, Secretaries of State for Health, Education and Work and Pensions, as well as to the devolved administrations.
We are asking for the opportunity to help officials review the guidance and find ways to enable people and families with Duchenne in their lives to begin living their lives more fully again.
How you can help
Please take action and send a letter to your MP/MSP and officials to help get our requests actioned. Follow the easy steps below;
- Personalise the template letter we have prepared for you using the easy-to-follow instructions, remember to keep it short and sweet – here
- Find your local MP’s contact details on this useful website – here
- Send the letter, Tweet the decision makers using #weneedanswers, make your voice heard and share our articles on social media.
You have the power to make a big change which will benefit everyone in the Duchenne community. If we come together as a community, we will get the answers we so desperately need.
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