Many people with Motor Neurone Disease (MND) develop weak neck muscles, leading to pain, restricted movement, and problems with swallowing, breathing and communication. The neck collars available were of limited use for people with MND and frequently rejected by patients. Patient identified problems with existing neck supports and specification of what their requirements were for an ideal neck support were addressed by this multidisciplinary collaborative project involving patients, researchers, clinicians, academics and designers across different organisations to produce a new neck collar.
Patients were involved at all stages of the research cycle. From identifying the need for a new fit for purpose orthotic device, involvement as co-applicants for grant funding requests, and providing input into the design process and protocols for user testing of the new product, disseminating the research results and were featured in press coverage upon market release of the product.
A group of patients and carers living with Motor Neurone Disease (MND) were at the core of involvement activities over a long-term period from 2010. The quarterly meeting research advisory group (Sheffield Motor Neurone Disorders Research Advisory Group) continues to feed in to a broad range of research through regular interaction with researchers. The HeadUp collar (previously known as the Sheffield Support Snood) is now available commercially through TalarMade and has been clinically adopted by 25 NHS Trusts across the UK as of May 2018.
Problems addressed by Initiative
The initiative addressed a gap in the provision of support orthoses for patients with chronic and progressive neck weakness as frequently experienced by patients with Motor Neurone Diseases.
Quality of patient engagement
Results and outcomes
Sheffield, United Kingdom