Centre for Disability Research

Living with Motor Neurone Disease

Led by Dr Jo Ferrie for the Strathclyde Centre for Disability Research (the former name for the Glasgow Centre for Disability Research), this work has explored the intersection between disability, chronic ill health and terminal illness.

This stream has produced three reports; and multiple peer reviewed publications.

In recognition for these contributions, Jo was appointed as PI to the Euan MacDonald Centre, affiliated with the Anne Rowling Clinic at the University of Edinburgh: Europe’s largest hub of scientists working to support adults with Motor Neurone Disease (MND) and find a cure or treatment.

The work has had significant impact leading to the doubling of MND Specialist Care Nurses in Scotland, and the funding of these moving from charitable to national health budgets. Further, the Speak Unique project launched in 2020 as a business, to maximise its reach for those who are challenged by voice degradation.   

Publications

Ferrie, J., & Wiseman, P. (2020). Interrogating the body: Exploring what it means to live with motor neurone disease using phenomenology. SAGE Research Methods Cases.doi:10.4135/9781529716177 

Keynote: Ferrie, J. with Rewaj, P. (2018) Finding Your Voice and Coping with a Distressing Diagnosis International Conference on Neurological Disorders and Stroke, Athens Greece. (doi:10.21767/2171-6625-C3-013)  

Invited Speaker: Ferrie, J. (2018) Running Out of Time: The experience of living with a neurological condition. 13th World Conference on Neurology and Neuromuscular Disorders, Frankfurt Germany. 

Ferrie, J. & Bates, S. (2018) A Qualitative Evaluation of the Futures MND Initiative: Foregrounding the Views of Families who Experience MND. Euan MacDonald Centre and MND Scotland. 

Ferrie, J. & Bates, S. (2018) A Qualitative Evaluation of the Speak Unique Project: Logistics & Experiences. Euan MacDonald Centre and Chief Scientist Office 

Ferrie J. and Wiseman, P. (2016) Running Out of Time: Exploring the concept of waiting for people with Motor Neurone Disease. Time and Society, published online 16 August 2016. 

Ferrie, J. & Watson, N (2015) The psycho-social impact of impairment: the case of Motor Neurone Disease,  Editor: Shakespeare, T. Disability Research Reader, Routledge 

Ferrie, J., Robertson-Rieck, P. and Watson, N. (2013) Living with MND: An Evaluation of Care Pathways Available to Adults with, or Families or Carers of, Adults with Motor Neurone Disease in Scotland. MND Scotland