The SMS UK Foundation has commissioned a project to understand the requirements for sleeping safely and the potential solutions for this to happen.
We need the help of our global SMS families.
If we could capture the sleep experiences of every SMS family, or as many as possible, then we would have a significant body of evidence from which to be able to support the needs of our families.
On 21 March 2019 a professional focus group with parental contribution comes together to consider what is required for those with SMS and their families and carers to be confident in overnight safety. A focus group for families will be arranged for April. We need to know your experiences with SMS sleep, whether there are horror stories or no concerns at all.
Please share your experiences through the online survey via https://tinyurl.com/y2henqmp. The password required is cerebra. The survey takes 30-45 minutes to complete on average.
The tangible outcome expected from this project is the publication of clear, supported guidance to solutions and approaches to managing sleep environments in Smith-Magenis Syndrome that can be used by families and professionals with confidence. Families would thus be provided with the support they need for managing sleep patterns in an efficient way to maximise child safety and well-being. Such guidance would help in the selection of the appropriate solutions including facilities and equipment allowing for them to be provided in the most cost-efficient manner.
Dates for 2019 Conference Announced