Care Information

Standards of Care

Standards of care have not yet been finalised in the UK, however an English translation of the Dutch 2018 Guidelines for FSHD can be found here, and the 2010 International Workshop Report into Standards of Care for FSHD can be found here. 

Alert Cards

MDUK produces ‘alert cards’, conveniently shaped to fit inside a wallet and outline key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. Download and print your own here, or order one to be delivered by post here.  

Find a neuromuscular specialist

• The NHS Services ‘find neurology services’ page can be found here 

• The MDUK ‘in your area’ search can also be used to find local NHS specialist services 

Martha's Law / Call 4 Concern

Martha’s Rule is a major patient safety initiative by NHS England to provide patients and families with a way to seek an urgent review if their or their loved one’s condition deteriorates and they are concerned this is not being responded to. See the NHS dedicated web page with more information here.