We were delighted to welcome children and families to our third workshop on the ‘Design and Development of an Innovative Neck Stabilising Aid for Children with Narcolepsy’.

This project is funded by the Medical Research Council Confidence in Concept Scheme and is a collaboration between young people with narcolepsy, the design engineering team at Sheffield Hallam University, the Sheffield Institute for Translational Neuroscience, Sheffield Children’s NHS Foundation Trust, and NIHR CYP MedTech.

Narcolepsy is a disabling neurological sleep disorder characterised by excessive daytime sleepiness and attacks of muscle weakness precipitated by strong emotions, known as cataplexy. The symptoms of this debilitating condition have a huge impact on a child’s life.

Our Respiratory and Sleep Theme organised two exploratory workshops to identify the the general challenges faced by children and young people with narcolepsy and cataplexy. The main problem identified in these workshops was how to best support a child’s head and neck when they fall asleep in the car.

Children with narcolepsy inevitably fall asleep on car journeys and the loss of head control causes immense stress to parents who may be driving the car and unable to support their child, as well as pain and discomfort for the child. There is currently no suitable car seat or effective neck support for these children.

A series of follow up workshops were therefore organised for children and families to share their experiences, identify criteria for a new head and neck support, and develop and test prototypes. Nine fully functional prototypes were produced in total and were tested by children and families in this third workshop.

Children, young people, and families will continue to be involved in development and evaluation of this neck support.