New Good Practice Points – Duchenne Muscular Dystrophy

The iHV is delighted to share new Good Practice Points:

NEW: GPP – Duchenne Muscular Dystrophy – recognition, diagnosis and clinical care

These Good Practice Points, authored by Dr Henriette van Ruiten, Clinical Research Associate and Paediatric Neurology Grid Trainee, John Walton Muscular Dystrophy Centre and Great North Children’s Hospital, Newcastle upon Tyne, and Dr Michela Guglieri, Senior Lecturer and Consultant Neurologist, The John Walton Muscular Dystrophy Research Centre, Newcastle upon Tyne, set out what health visitors need to know about the recognition, diagnosis and clinical care of Duchenne Muscular Dystrophy.

Go to GPP - Duchenne Muscular Dystrophy - recognition, diagnosis and clinical care

Please note that these GPPs are available to iHV members only.

If you’re not a member, please join us to get access to all of our resources.

The iHV is a self-funding charity – we can only be successful in our mission to strengthen health visiting practice if the health visiting profession and its supporters join us on our journey. We rely on our membership to develop new resources for our members.

So do join us now!

Doctors launch ‘game-changing’ new e-learning tool to help identify muscle degenerative disorders

The lives of thousands of children who suffer debilitating muscle degenerative disorders could be dramatically enhanced as doctors launch a new tool that opens the door to treatment before conditions fully take hold.

The Royal College of Paediatrics and Child Health (RCPCH), in partnership with the John Walton Muscular Dystrophy Research Centre in Newcastle and the Great North Children’s Hospital, has developed an e-learning tool which aims to help healthcare professionals identify the early signs of muscle disease.

The new e-learning resource aims to equip health professionals with the information to identify conditions such as Spinal Muscular Atrophy and Duchenne Muscular Dystrophy at the earliest opportunity. This will in turn, allow treatment to begin much earlier which not only has the potential to enhance mobility and prolong life but will also allow family members to be tested to assess the risk of the condition being passed on to future generations.

In the UK, more than 70,000 people have Muscular Dystrophy or a related condition. Doctors say this new resource, aimed at health visitors, GPs, nurses and physiotherapists will void the gap of knowledge that currently exists and will finally enable awareness to catch up with the science.

With this early identification, they hope that more children can take advantage of the revolutionary new drugs on offer which have the potential to greatly enhance muscle strength, improve quality of life and survival. Currently, science is well ahead of awareness so this new tool could be a game changer for patient outcomes.

Go to RCPCH website to find out more

Go to RCPCH Compass Online Learning Tool - learn the signs and help improve the quality of a child’s life today

The e-learning, which is aimed at healthcare professionals such as nurses, GPs and physiotherapists, comprises clear and easily understandable video footage of normal and abnormal development and provides clear action points at five key stages of motor development that will give the user confidence in knowing how to identify a child at risk and what to do next.

PHE: Screening newborns for muscle wasting condition not recommended

Newborn babies should not be screened for the muscle wasting condition Duchenne Muscular Dystrophy, according to the UK National Screening Committee (UK NSC) . The current test available for the condition incorrectly identifies some babies as having the condition and misses others who go on to develop the disease.

Duchenne muscular dystrophy is an inherited condition which causes muscles to weaken. This gets worse over time and leads to increasing levels of disability. It is caused by faults in the genes responsible for muscle development and mainly affects boys. The symptoms may be noticed when a child has difficulty standing up, climbing or running. Between 100 to 200 boys with the condition are born in the UK each year.

Read full PHE press release