Standards of Care

The International Standards of Care for SMA (SoC) have been written by expert clinicians with input from people affected by SMA. They set out the minimum standards of care that anyone with SMA should expect, wherever they live. They’re used by your medical team whenever they’re discussing and deciding with you and your parents what’s the best care and management for you. They’ll be thinking not only about your ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also about which physical milestones you’ve reached.

For simplicity, these milestones are sometimes used to group people with SMA as:

  • non-sitters - those who are unable to sit
  • sitters - those who are able to sit but not walk
  • walkers - those who are able to walk 

They’re not the most user-friendly terms, but advice and care may vary depending on which one applies to you.

The Guide includes these chapters:

  • Chapter 1 - Introduction    
  • Chapter 2 - Genetics and diagnosis    
  • Chapter 3 - Physiotherapy and Rehabilitation    
  • Chapter 4 - Orthopaedic Management    
  • Chapter 5 - Nutrition, Growth and Bone Health    
  • Chapter 6 - Breathing (Respiratory and Pulmonary Care)    
  • Chapter 7 - Other Organs and Systems    
  • Chapter 8 - Medication    
  • Chapter 9 - Emergency Care    
  • Chapter 10 - Anaesthetics    
  • Chapter 11 - Administration of new treatments for SMA    
  • Chapter 12 - Ethics and Choices    

You can read or download the full Guide here:
www.smauk.org.uk/international-standards-of-care-for-sma

Page last reviewed: August 2021

Next review due: August 2022