A revolutionary new collar which will benefit people with MND and others with weak neck muscles was launched at the Symposium.
People with MND can experience head drop as a result of neck weakness, which in turn can cause pain and difficulties with communication and swallowing.
In the past, many of the cervical orthoses available were designed with other conditions in mind, and either did not provide enough support or were too rigid.
Professor Chris McDermott explained people with MND were involved in a user centred design project, alongside engineers, designers and healthcare professionals to develop a specific orthosis to meet the needs of people with MND.
The cervical orthosis, known as the ‘Head Up’ collar was developed to make it easier for patients to carry out everyday tasks such as eating, driving and communication. It can be customised to provide support where it is needed most and to adapt to the changing needs of the patient.
116 patients from 10 centres across England, Wales and Ireland were fitted with a HeadUp collar to use at home for one month, after which they completed a questionnaire and assessment. Health professionals were also asked to complete and assessment on the practical aspects of fitting the collar.
The majority of patients chose to keep the HeadUp collar and continue to use it after the trial period. They reported higher levels of satisfaction compared to collars used previously, a better level of support, lack of interference with eating and drinking and improved appearance.
The HeadUp is manufactured by TalarMade, and will be available on their website from April 2018, through the NHS in the UK or for worldwide orders. Online videos including tips, tricks and fitting advice will be created for patients, carers and professionals.
Head of Education and Information
MND Association, UK