Towards Equitable Motor Neurone Disease Care in Australia: Identifying Gaps and Co-Designing Solutions

Background: Optimal care for people living with motor neurone disease (MND) is best delivered through access to specialised multidisciplinary clinics. Coordinated inter-professional and integrated specialised MND care has been shown to extend survival, improve quality of life, reduce hospital admissions and slow functional decline. However, access to such care remains inequitable across Australia, with significant variation in funding, service availability and integration. This is the first national study to explore these inequities and co-design solutions with the MND community to improve access to specialist and local care for all Australians with MND.

 

Approach: This national mixed-methods study involves two stages. Stage One: a REDCap survey completed by people with lived experience of MND (PLEx-MND) (n=71), health and social care providers (n=48), and MND care researchers (n=4). The survey captured demographic data, care accessed, and key challenges faced. These findings informed the design of online focus groups, scheduled for November–December 2025, inviting participants from metropolitan, regional, rural, and remote areas. Service mapping methodology is being used to build the first national picture of MND clinics and other multidisciplinary services accessed across Australia. The Consolidated Framework for Implementation Research will guide a hybrid inductive and deductive analysis of survey and focus group data. This analysis will identify barriers and enablers, and context-specific concerns related to accessing and delivering MND care.

 

Stage Two comprises co-design workshops with the MND community in early 2026, exploring solutions to overcome inequities experienced. A research and stakeholder advisory group, including lived experience, healthcare, service providers, researchers, policymakers, and culturally diverse representatives, guide and oversee all aspects of the study.

 

Results: Survey findings revealed significant barriers and enablers to accessing MND care across Australia, including fragmented services, knowledge and resource gaps, lack of coordination between specialist clinics and local services, and limited services in rural and remote areas. Additional challenges included age-related funding inequities, delays in diagnosis, slow referral pathways and culturally appropriate services. Health and social care providers reported moral distress due to systemic delays, rapid MND progression, and limited support from specialist services. Proximity to metropolitan areas was associated with better access to MND clinics and broader service options.

 

Focus group findings will be presented, providing a more comprehensive understanding of health equity issues. A national service map, being developed, details MND clinic locations, staffing, funding models, governance structures, referral pathways, telehealth use and research access. Region-specific information, including cross-border and geographical location issues, technological infrastructure, and workforce availability, is being integrated to reflect contextual variations.

 

Implications: This is the first national study to identify context- and population-specific barriers to accessing MND care in Australia. Findings will inform national consultations and co-design of more equitable care models. An emerging service map will offer valuable insights into the operationalisation and connectivity of specialist MND clinics and multidisciplinary teams with local services, where people with MND live. This research will provide a critical evidence base to support national advocacy, policy reform, service design, clinical practice, and care guidelines.