Urgent action needed to protect families affected by Duchenne muscular dystrophy
I am deeply concerned about the devastating impact the collapse of NRS Healthcare is having on families across the UK. As Chair of Action Duchenne and grandmother to an 11-year-old living with the condition, I see daily the serious consequences of not having access to this critical equipment.
Duchenne is a progressive, life-limiting condition. Children and young people rely on specialist equipment to maintain mobility, independence, and dignity. When this equipment cannot be repaired or replaced, the effects are immediate and irreversible; lost mobility cannot be regained. Families who already face immense daily challenges are being left without the support they need to care for their loved ones safely.
Despite assurances that alternative suppliers would be found, many families report there is still no clear provision. Vital equipment remains unrepaired because no provider has been identified to take on responsibility for “specialist equipment.” This situation is unacceptable.
We call on the Department of Health and Social Care and local authorities to act urgently. A fast, coordinated solution is needed to ensure children and young people with Duchenne, and others with complex health needs, are not left without the vital equipment that allows them to maintain their health, dignity, and quality of life.
Have you been affected?
We know that despite reports that services will continue, many people are experiencing a loss of service and delays in provision which is resulting in significant unmet need. For families in our community who already face so many challenges, this is simply not acceptable.
We want to find out more about how this is affecting the families in our community so that we can ensure your voices are heard.
Tell us:
- Where in the UK are you based?
- How has the recent collapse affected your equipment provision?
- What impact does this have on your current day to day life?
- Are you happy for us to share your story?
Contact lizzie.cox@actionduchenne.org
