Clinicians and Patient Groups want to establish a project (SMA Care UK) to update and implement UK Standards of Care across all ages. A proposal is due to be finalised in 2023 when SMA UK will endeavour to secure funds to support the first 3 years of the project.

Clinicians and Patient Groups want to establish a project to update and implement UK SMA Standards of Care across all ages and groups. The project would address people’s evolving care and management needs reflecting developments around treatments, ensuring that those living with SMA are central to this process. Clinicians and patient representatives from across the country would be involved in the establishment of working groups to review each aspect of care.

The main objectives of the first 3 years of the project would be:

• To review the International SoC (2017) with clinicians and patients to identify key aspects of care that require revision / update in light of the changing SMA landscape.
• To establish a UK SMA SoC consensus for each area of care.
• To implement and disseminate a UK minimum recommendation for each aspect of care.
• Address inequalities in care for families and adults between different sites across the UK by campaigning for this UK standard to be accessible to all people who have SMA, no matter where they live.
• Identify areas of care where further work / evidence / research is needed and work with SMA Europe and other international groups to develop new consensus statements for specific elements of care.
• Link with ongoing international initiatives to update the SoC recommendations based on the evolving therapeutic landscape.

How can you help? 

Learning from individual experiences is so important when trying to find best practise. If you would like to inform the diagnosis working group of the SMA Care project by sharing your diagnosis story, then our Advocacy Lead would love to hear from you.

Please email portia.thorman@smauk.org.uk