In 2023, MND NSW was involved in a research project that aimed to understand healthcare inequities of people living with MND in NSW, here are the results.
Authors
Julie Labra, Dr Anne Hogden, Andrew Peers, Andrew Collins (MND NSW), A/Prof Parvathi Menon, Prof Steve Vucic.
What was the study about?
In 2023, we sent an online survey to 471 people living with MND (plwMND) in NSW, to hear directly about their experiences accessing specialist MND healthcare and equipment.
Summary of survey results
132 plwMND or their nominated carer completed the survey. 53% resided within metropolitan Sydney, 47% in a regional, rural or remote (ie. RRR) area. Analysis revealed the positive and negative experiences encountered in accessing specialist healthcare and equipment in NSW.
Overall, 70% rated their healthcare quality as ‘excellent’ or ‘very good’. Satisfaction for those linked to a multidisciplinary MND clinic was higher than those not linked, regardless of where people lived. Uptake of interventions, particularly riluzole and drug trials, was also higher for those linked to a multidisciplinary MND clinic; as was use of telehealth.
RRR respondents were disadvantaged, with 39% not linked to a multidisciplinary MND clinic, compared to 21% not linked in metropolitan Sydney. They also reported specific access issues, including: travelling long distances for appointments, lack of healthcare professionals locally and high healthcare costs.
Funder-based restrictions and delays, as well as age-based discrimination, emerged as significant factors impacting on access to equipment and services.
How might the results help the MND community?
Results will support more efficient use of existing healthcare resources and support applications for increased funding of multidisciplinary MND clinics, particularly to support plwMND in RRR areas. The results will also help with future national studies that help to identify potential solutions to improve equity of access to specialist MND healthcare in Australia.
Learn more about the research and the findings
The research was recently presented at the MND Special Interest Group Workshop (SIG Workshop). View the presentation on the MND Hub. All courses are free for people living with MND and their informal carers, contact us for a course coupon