A national survey of Australians affected by neurological conditions has found that many people are struggling to access coordinated care, with long waits for diagnosis, difficulties finding specialist treatment and rising healthcare costs emerging as common concerns.
The first Neurological Alliance Australia (NAA) Neuro Survey gathered responses from 3,805 people across the country and provides a broad snapshot of the experiences of people living with neurological conditions.
The survey found that 39 per cent of respondents described their care as coordinated, while 51 per cent said they had difficulty accessing neurological care. Thirty per cent reported waiting more than four years for a diagnosis, 48 per cent said they had delayed or skipped healthcare because of cost, and 9 per cent felt fully supported by their healthcare team.
NAA Chair Rohan Greenland said the findings suggested many people were encountering problems across multiple parts of the health system.
He said some people waited years for a diagnosis, struggled to find appropriate specialists, faced high out-of-pocket costs for consultations and tests, and were left to manage complex care across multiple services on their own.
“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,” Mr Greenland said.
Neurological conditions include a wide range of disorders affecting the brain, spinal cord and nervous system, such as epilepsy, multiple sclerosis, Parkinson’s disease, motor neurone disease, migraine, ME/CFS and POTS.
One survey participant, James Dunn, said the results reflected many of the challenges he had experienced while living with myalgic encephalomyelitis, also known as chronic fatigue syndrome, and postural orthostatic tachycardia syndrome.
Mr Dunn said he had spent years building a legal career before co-founding a national consulting business, but was eventually forced to leave work to focus on managing his health.
He described the burden of navigating multiple appointments, specialists, tests and treatments, sometimes across state borders, while dealing with ongoing costs and limited coordination between services.
He said many people living with neurological conditions were facing similar barriers to obtaining timely, effective and affordable care.
The survey findings align with broader evidence that Australians living with long-term and complex health conditions often experience fragmented care, workforce shortages and uneven access to specialist services, particularly outside major metropolitan areas.
Mr Greenland said the survey was the first national effort to bring together the experiences of people across a wide range of neurological conditions and identify shared patterns across the healthcare system.
He said the findings could help guide future policy priorities, including earlier diagnosis, improved access to specialist care, better coordination across health, disability and aged care services, increased investment in neurological research and workforce development, and more equitable access to care regardless of where people live.
Neurological Alliance Australia is calling on federal, state and territory governments to work with people with lived experience, carers, clinicians, researchers and community organisations to develop a National Action Plan for Neurological Conditions.
Mr Greenland said neurological conditions affected millions of Australians, yet there was still no nationally coordinated approach covering diagnosis, treatment, research, workforce planning and long-term support.
He said work on neurological plans was already underway in some states and argued that a national framework could help improve access to timely, coordinated and affordable care across the country.
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