Community perspectives of spinal management in the UK research project

We know that the SMA Community are better connected than ever before and through social media and our virtual networks, discussions are had, and issues are raised.

SMA UK have launched a community survey to discover the differences in spinal management across the country and to collect perspectives on the effectiveness of different methods. The outcomes of this patient focused research will give clinicians a more holistic understanding of which methods families think are the most effective for their children and what best practices might look like from the perspectives of those living with SMA.

Spinal braces

While there is no clinical evidence to prove the efficacy of spinal bracing in Type 1 SMA we know that clinical opinion does vary. Research is currently being conducted within this area in several specialist neuromuscular centres around the country with the aim to discover the clinical reasoning behind the decisions made.

SMA UK are working with clinicians to give a patient perspective on the administration of spinal braces and management.

Lycra suits

SMA UK and the SMA REACH clinical network are also acutely aware that more families are approaching the private sector to gain access to lycra-based suits for postural support for their children, particularly within the Type 1 community.

The NHS do not currently recommend these suits for use in SMA management, and they are not mentioned in the current International Standards of Care document.

Patient focused research

The outcomes of this patient focused research will give clinicians a more holistic understanding of which methods are the most effective and what best practices might look like from the perspectives of thoes living with SMA.

It will also raise awareness of why families feel the need to purchase spinal braces privately and what that experience is like as well as gaining an insight into the perceived benefits of the lycra suit and the real-life experiences of families.

The higher the number of respondents and the more varied information we can collect the more likely we are able to influence change in this area.

Data to date

This chart shows where we have received data from so far. It is important that we have representation from all over the UK, so if you have not had a go at the survey yet and you have opinions about the spinal management of your child, please complete the survey here, especially if you live in an area that we have not received many submissions from.

Take part in our research project here

Survey Closes 1st January 2024