Brainstorm, light globe with brain inside and puzzle pieces

MND NSW is excited to announce surveys are now open for you to have your say about accessing specialised and coordinated MND healthcare in NSW and the potential use of telehealth in supporting people who live in regional and remote areas. 

Sponsored by St. Vincent’s Hospital Sydney, the project is a collaboration between MND NSW, St. Joseph’s Hospital, Concord Clinical School at the University of Sydney and the University of New South Wales.

Project title

Exploring access to Motor Neurone Disease healthcare in New South Wales, and the potential use of telehealth for patients in remote, rural and regional areas.


The project aims to explore the potential role of telehealth in improving access to specialised and coordinated care for people living with MND in remote, rural and regional areas.


Over the coming days, MND NSW will distribute surveys to people currently on our mailing list.

Surveys will go to:

  1. MND NSW participants who are living with MND.
  2. Healthcare professionals.
  3. Neurologists.

The survey is voluntary. Surveys close on 28 February 2023.

Project areas of focus

The outcome report will focus on:

  • Areas of greatest clinical need.
  • Barriers or challenges in accessing specialist healthcare.
  • Experiences of, and willingness to engage in, a specialist MND virtual health model for people living with MND as well as healthcare professionals.


The results of the survey will inform the development of a proposed model of care for specialist remote monitoring of people living with MND in remote, rural and regional areas of NSW. This may include a virtual health system to link Sydney based clinicians with patients and could be used to support and educate local clinicians in MND specific skills and healthcare.

Subscribe to news and updates