SMA Care UK webinar

SMA UK’s Head of Advocacy and Community, Portia, talks to Kate and Connor, both members of the SMA community. They see first-hand the need for a revised standards of care document for SMA in the UK.  
They are joined by Vanessa, project manager for SMA Care UK. She is bringing together UK SMA clinicians, researchers and the SMA community. UK. They will share practices, research and experiences to create this important document.  
Anne Marie Childs, Paediatric Consultant Neurologist and one of the two Principal Investigators of the SMA Care UK project said: 
This discussion highlights the need for updated standards for the SMA community. 
Involving those living with SMA is crucial for the project. It will help set priorities, ensure the guidance is relevant, and empower people to get the best care.
It is vital to share the guidance with those less familiar with SMA, especially acute care providers. 
I am really excited to join this project, working with the SMA and clinical community during these changing times. We want to address unmet needs and improve care for all with SMA in the UK.
How to get involved 
It is essential that people living with SMA sit at the heart of this project. This includes anyone who has SMA, parents, carers and personal assistants.  There are different ways you can join:
The SMA Care UK Facebook group SMA Care UK Facebook Group  
This has discussion forums where you can share your experiences in each field of care. You can review documents as they evolve and share your views on the clinicians' recommendations.   
A working group as a patient expert 
If you have a lot experience in a particular area of SMA Care that you want to share, please get in touch with [e-mail] You will be able to join remote meetings with leading clinicians to discuss what best practice should look like.
Our face-to-face adult care workshops 
We want to ensure the new standards of care document is as relevant for adults as it is for children. We will run two workshops, in or around London and Manchester early in the new year.  If you are an adult living with SMA in the UK with views on what needs to be included, please register your interest . More information to come.