NICE reviews respiratory care guideline

What NICE’s review means

NICE’s review confirms that the respiratory guideline has followed a rigorous process and that healthcare professionals should have confidence in its use to support consistent, high-quality care across the UK.

“We think the guideline from DMD Care UK is a useful resource that will help healthcare professionals improve care in this area.”

NICE website

This recognition strengthens DMD Care UK’s mission to make sure everyone with DMD receives the best possible care, wherever they live.

Why respiratory care matters

Respiratory health is a critical aspect of managing DMD. As muscle weakness progresses, breathing can become more difficult, and proactive care is essential to maintain quality of life and prevent complications.

The DMD Care UK respiratory guideline provides clear recommendations for:

• Regular monitoring of breathing function from the early stages of DMD.
• Early introduction of cough assistance techniques to help clear secretions and reduce infection risk.
• Non-invasive ventilation (NIV) for individuals with declining respiratory strength, improving sleep quality and overall health.
• Emergency planning, including guidance for managing chest infections and hospital admissions.

These guidelines were developed by leading UK clinicians in collaboration with patient representatives, ensuring they reflect both clinical expertise and lived experience.

You can download the respiratory care patient leaflet here.

Duchenne Care UK – raising standards of care

‍Duchenne Care UK is a collaborative initiative between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Duchenne UK, embedded in the UK North Star Network. It is funded by Duchenne UK, Duchenne Research Fund and Joining Jack.