We want every individual with SMS to have coordinated care!
For all our SMS families, care is never about a single visit to a single service. Good care seamlessly moves between services – between the GP, hospital, and back again.
Sometimes this seems like an impossible goal.
We want to help you through this process. We are currently producing a passport-style document for you to give to professionals which will describe everything about SMS and how it impacts your SMSer – reducing the burden on you to explain your SMSer.
This starts with us learning about your SMSer’s health and behaviour, and where your concerns lie.
If you are a parent/carer for an individual with SMS please help us in gathering valuable evidence by completing this questionnaire. It will only take approximately 8 minutes, and this will enable us to produce a document which will save you answering all the questions professionals will have about the features of SMS and how the SMSer is affected by different conditions and behaviours.

Affection! Study Participants Needed