New independence for people with neurodegenerative diseases

Motor neurone disease (MND) is a group of diseases that affect the nerves in the brain and spinal cord that tell your muscles what to do.

This neurodegenerative disease gradually affects people’s ability to move, walk, talk and eventually breathe. Treatments are very limited, and most patients with the disease are only expected to live two to five years after diagnosis.

Many people with MND begin to lose strength in their neck, causing their heads to droop to the side or the front. Most of the head supports currently available to MND patients resemble the restrictive braces used after a trauma – such as a car crash. These existing supports typically restrict any residual head movement, and patients find them uncomfortable, bulky and visually unappealing.

A revolutionary neck collar designed to ease pain and make everyday tasks much easier for people with MND is now available to patients in the NHS and across the world thanks to our funding.

The Head Up collar, which is made from a material initially designed to line NASA space suits, offers personalised support to the small muscles in the neck, helping people with MND to eat, communicate, drive and carry out other day-to-day activities.

Funded by NIHR’s Invention for Innovation (i4i) programme, the Head Up collar was developed in an innovative five-year project by the University of Sheffield, Sheffield Hallam University and the NIHR Devices for Dignity MedTech Co-operative, which is hosted by Sheffield Teaching Hospitals.

The collar was designed with the help of people with MND and has been trialled by over 100 patients – 80% of whom said the collar helped them and they wanted to carry on using the it after the trial.

The collar, which was produced in collaboration with the Motor Neurone Disease Association, is now being used with suitable patients at 25 NHS Trusts.

Andrew Stanton, Medical Design Researcher at Lab4Living, part of Sheffield Hallam University and a member of the team that designed the Head Up collar, said:

“The whole ethos of this project, from the very start, has been collaboration. The project team was made up of healthcare professionals, designers and engineers.

“As a group, we worked with those people living with MND and their carers, to understand their needs and hopes for the product and their contribution throughout the whole process helped us to get where we are today.

“We are excited that the product is now available to patients around the world, with Sheffield – the universities and local NHS – bringing a life-changing and life-enhancing healthcare product to market.”

Although the collour uses MND as a case condition, it will also benefit people who have weak neck muscles due to other diseases, such as stroke, myopathy, dystonia and multiple sclerosis. In addition to the 5000 people in the UK living with MND/ALS, an estimated 100,000 people are living with multiple sclerosis and 250,000 people with the effects of stroke.

The neck support is now available on the NHS.

Read more making a difference stories.

 Philip Brindle, 72, from Chesterfield was diagnosed with MND in 2015, by which point his neck had become so weak that he could not hold his head up at all.

“I felt very self-conscious. On holiday or in the pub, my head would be down. Eating and drinking were difficult, communicating with people could be awkward.

“This just added to the complications that we were facing. We didn’t know how we were going to cope.

“I’ve had the collar for about 18 months. Whatever I’m doing - whether just reading the newspaper, watching the TV, out and about, driving - I wear the collar most of the day.

“Even if I’m just sitting reading a book, that little bit of help makes all the difference.

I can’t imagine what it would be like without it. It’s life changing

More NIHR research on motor neurone disease

• Researchers funded by the NIHR Health Technology Assessment (HTA) Programme are investigating a form of talking therapy called Acceptance and Commitment Therapy (ACT) to help people cope psychologically with MND 
• Researchers at the NIHR University College London Hospitals Biomedical Research Centre are looking at how changes in gut bacteria could slow the progression of neurodegenerative disorders such as MND.