First-ever national neurological survey in Australia reveals gaps in care

Australians living with neurological conditions are facing significant barriers to diagnosis, treatment and ongoing care, according to the first national survey of people affected by neurological conditions.

Released by the Neurological Alliance Australia (NAA), of which the Brain Foundation is a proud member, the inaugural Neuro Service Gaps and Innovation Survey captured the experiences of 3,805 Australians, providing the first nationwide snapshot of the challenges people face in accessing neurological care. The findings paint a concerning picture of a healthcare system struggling to meet the needs of people living with neurological conditions.

Among the key findings:

• More than half (51%) experienced difficulty accessing neurological care
• Nearly 1 in 3 wait more than four years for a diagnosis
• Almost half (48%) delayed or skipped healthcare because of cost.
• Nearly 1 in 2 carers provide 36+ hours of care per week
• Only 4 in 10 report their care as coordinated
• Just 9% felt fully supported by their healthcare team
• Nearly 1 in 2 people are unaware of research opportunities

NAA Chair Rohan Greenland said the survey shows Australians are being let down at multiple points throughout the health system.

“For someone living with a progressive, fluctuating or complex neurological condition, a delay in one part of the system can severely impact their health, independence, employment, family and future care needs.”

The survey also highlights the personal impact these gaps in care can have.

James Dunn, who lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS), said navigating the healthcare system can become as challenging as managing the condition itself.

“Living with a complex neurological condition isn’t just about managing the condition itself,” he said.

“It’s about navigating a complex healthcare system, dozens of appointments, specialists, tests and treatments, sometimes outside your state or territory, while carrying significant ongoing costs, and often without the coordinated care and support you need.”

The report found that these experiences are shared across many different neurological conditions, suggesting the challenges are systemic rather than condition-specific.

A roadmap for reform

Neurological Alliance Australia says the findings provide clear priorities for improving neurological care across Australia, including:

• Faster diagnosis and better access to specialist neurological services.
• Better coordination between health, disability and aged care services.
• Greater investment in neurological research.
• Growing the neurological workforce to meet increasing demand.
• Ensuring equitable access to care regardless of where someone lives.

The organisation is calling on Australian governments to work with people with lived experience, carers, clinicians, researchers and community organisations to develop and implement a National Action Plan for Neurological Conditions.

Mr Greenland said Australia currently lacks a nationally coordinated approach to neurological conditions, despite millions of Australians living with these disorders.

“These survey findings provide a roadmap for change,” he said.

“We now need governments across Australia to work with the neurological sector to develop and implement a National Action Plan that gives Australians living with neurological conditions a fair opportunity to receive timely, coordinated and affordable care.”

The Brain Foundation supports efforts to improve access to timely diagnosis, coordinated care and investment in neurological research. Neurological conditions affect millions of Australians and, as this landmark survey demonstrates, addressing the gaps in care will require collaboration across governments, researchers, clinicians and the broader neurological community.

Read more: The full Neuro Service Gaps and Innovation Survey Report and executive summary are available from Neurological Alliance Australia.