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Revolutionary neck support collar now available on the NHS for people with motor neurone disease

Published: 30 May 2018

A revolutionary neck collar designed to ease pain and make everyday tasks such as eating and communicating much easier for people with motor neurone disease is now available to patients in the NHS and across the world.

The Head Up collar, which was funded by NIHR’s Invention for Innovation (i4i) programme and the Motor Neurone Association, has been brought to market as a result of an innovative five-year project by the University of Sheffield, Sheffield Hallam University and the NIHR Devices for Dignity MedTech Co-operative.

The neck support collar is now being used with suitable patients at 25 NHS Trusts and is available to purchase worldwide from Chesterfield-based manufacturing company TalarMade.

Motor neurone disease is a debilitating condition that destroys the cells that control movement, leaving patients unable 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.

A frequent problem caused by motor neurone disease is the loss of strength in the neck, causing patients’ heads to droop to the side or the front. Until now, many head supports available to patients resemble the restrictive braces used after a trauma – such as a car crash.

The unique Head Up collar, which was designed with the help of patients with motor neurone disease, offers personalised support to the collection of small muscles in the neck that are particularly vulnerable to the wasting effects of the disease.

The neck support collar was trialled by more than 100 patients in 10 sites across the UK and Ireland, 80% of whom felt the collar helped them and wanted to carry on using the collar after the trial.

Lead clinician in the Head Up project, Chris McDermott, Professor of Translational Neurology at the University of Sheffield and Consultant Neurologist at Sheffield Teaching Hospitals, said: “Motor neurone disease is a terrible disease, and what we need is a cure that stops people from dying from the condition. While something like this collar is not going to change the disease course, we hope it will help improve patients' quality of life and help them get the most out of what they can do.”

Professor McDermott, who is also the Deputy Director of the NIHR Sheffield Biomedical Research Centre, added: “The concept itself seems extremely simple and we couldn’t believe something like this hadn’t been developed and patented before.”

Clinical Director of the NIHR Devices for Dignity MedTech Co-operative, Professor Wendy Tindale, said: “Devices for Dignity has been a real catalyst in enabling the Head Up collar to be developed and made accessible to patients. Gathering the evidence about how it has helped people with motor neuron disease has been a really important part of the journey and has helped in ensuring the product got to market.”

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