NICE (the National Institute for Health and Care Excellence) have released for consultation, a new set of draft guidelines for healthcare professionals to use in recognising and referring suspected cases of neurological conditions (including Duchenne and Becker muscular dystrophy).

NICE Suspected Neuro Conditions Draft Guidelines

Duchenne muscular dystrophy is included in the draft guidelines (pages 131-136) under the 'Motor development delay and unsteadiness' section. The guidelines currently cover:

  • The use of the Creatine Kinease (CK) test to identify Duchenne muscular dystrophy
  • Referral to specialist services (and acknowledging that GPs do not have the resources to manage DMD)
  • The importance of early diagnosis so that genetic counselling and support can be provided
  • The importance of early diagnosis so that the use of steroids can be considered.

What next?

Action Duchenne will be providing feedback and input to this consultation. Your opinions and experiences are a vital part of this process and we invite the Duchenne community and healthcare professionals working in Duchenne muscular dystrophy to do the same.

You can submit your feedback by emailing [email protected]

The deadline to submit responses to the consultation is 19 September, so if you would like us to submit on your behalf please email us by 15 September. Please remember to state in your email whether you would like your comment to be made anonymously.