Our healthcare research aims to lead to better symptom management and support for people living with MND. We know that neck weakness is an extremely distressing problem in MND and it is very difficult as a clinician to treat this.
Dr Chris McDermott from the Sheffield Institute for Translational Neuroscience (SITraN) said that he wanted to address this problem by working with people living with MND to develop a solution.
Current neck supports available are often restricted. This is because they are designed for other purposes (eg such as immobilising the necks of individuals after trauma). This means that people living with MND who experience neck weakness are left with the wrong tool for the job.
Our neck is designed to support our brain, and as humans we have developed a very large one of these. To put this into context, this means that our neck has to hold up the equivalent of 5Kg (or five bags of sugar)!
Dr McDermott highlighted that there are currently no specific neck supports available for people living with MND, stressing that there is a real need for this kind of support.
Patients, designers, clinicians and engineers
Dr McDermott said: “People living with MND asked us – can you do anything about this? So, we worked with local MND Association branches to design a neck support for people living with MND.”
After speaking to people living with MND the team decided that the device needed to support the neck, be customisable and adaptable for needs, as well as looking natural.
This saw people living with MND, clinicians, designers and engineers working together to try and develop a solution to the problem. Dr McDermott commented: “The advantage of designers is as you learn about problems, you can design out the problems.”
Dr McDermott said: “During the design process, we used hair curlers and everything in the beginning. My personal favourite, however, was the ‘Magneto neck concept’ – but we didn’t end up going with that one, or the R2D2 concept in the end!”
During the whole process, people living with MND were involved form the start. Trialling the neck supports and giving feedback to the team, such as what worked and what didn’t.
The Sheffield Support Snood
The end result was the ‘Sheffield Support Snood’ or ‘SSS’ for short. The team trialled the new neck support on 26 people living with MND, of which 20 completed the study.
During this process the team learnt a lot about different shapes of neck – something which is a unique and different as we all are.
Feedback from participants was that there was strong agreement that the Snood offered support, comfort and no pain compared to existing neck supports.
“I love the way you can adjust it in lots of different ways”
“It looks like an item of clothing and you can wear a scarf over it”
Final thoughts and what’s next?
Dr McDermott said: “Although there are many neck collars out there, most were designed for another purpose. These collars don’t work for people with MND. People take them home and they end up under the stairs gathering dust, rather than around someone’s neck. We worked with engineers, product designers, fashion designers and most importantly people living with MND to develop the new collar.”
The next challenge for Dr McDermott is to get someone to make this and take this on, which is difficult due to the relatively small market. However, Dr McDermott stated that he is in the process of discussing this with several companies.
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