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.