Atypical parkinsonian syndromes are rare complex neurodegenerative diseases such as progressive supranuclear palsy. Patients rapidly deteriorate, accruing multiple disabilities including walking, swallowing, visual and cognitive dysfunction. Patients quickly become dependent and die typically within 6 years of disease onset.
Unfortunately there is no curative or disease modifying treatment and management is supportive. It is not known how best to care for patients with these class of diseases. In particular, would it be more useful to have a multidisciplinary clinic, with therapists, allied health professionals and a coordinator present at the appointment, or a straight forward appointment with a single clinician with separate referrals to other agencies as needed. We are therefore assessing examples of both types of services with longitudinal quantitative and qualitative assessments. This will be used to determine benefits for quality of life and health economics. Results will be used to inform national guidelines and best management practice going forwards.

read more