Experts say postcode remains a major factor in access to timely diagnosis, treatment and ongoing support.
Australians with epilepsy are being pushed into overcrowded emergency departments and left waiting months for specialist care as health experts warn the health system is failing many patients, particularly those in rural and remote communities.
The warnings come in submissions to the Senate inquiry into Epilepsy in Australia, with neurologists, GPs, rural health advocates and government agencies describing a fragmented system marked by workforce shortages, long specialist waitlists and growing inequity.
The submissions – 187 to be exact – to the Senate Community Affairs References Committee inquiry paint a picture of a fragmented and overstretched system, where patients face long delays for neurologists, limited access to diagnostic testing and major disparities between metropolitan and regional care.
The Department of Health, Disability and Ageing’s submission said about 152,000 Australians were estimated to be living with epilepsy.
It said there were 25,200 hospital admissions in 2023–24 where epilepsy was the principal diagnosis, alongside another 12,300 admissions where epilepsy was recorded as an additional diagnosis.
Emergency departments recorded 29,200 epilepsy presentations during the same period, with almost half of those patients subsequently admitted to hospital.
Government data also revealed epilepsy was among the leading causes of disease burden in young children. It was ranked as the third-leading single cause of disease burden among children aged one to four years, and the fifth-leading cause among children aged five to nine years.
Rural and remote Australians are experiencing the greatest barriers to care, the department conceded.
“In general, people living in regional and remote areas have poorer access to and use of primary health care services, such as general practitioners,” the department’s submission said.
“This can contribute to poor management of chronic conditions such as epilepsy, and more interactions with the health system in tertiary care settings rather than primary care.
“Similarly, the rate of hospital admissions due to epilepsy was 2.1 times as high among people living in remote and very remote areas compared with those living in major cities, after adjusting for age.
“However, compared to ED presentations, this could include hospitalisations for planned procedures in hospitals such as generalised allied health interventions and assessment of personal care and other activities of independence.
“National policy frameworks recognise that geographic location remains a significant barrier to timely diagnosis and effective treatment for conditions requiring specialist diagnostic investigations and care, such as epilepsy.”
The National Rural Health Alliance said epilepsy had become both a neurological condition and a health equity issue for Australians living outside metropolitan centres.
“Epilepsy in Australia must be understood not only as a clinical condition, but as a matter of health equity,” the alliance said in its submission.
“For people living in rural, regional and remote communities, the burden of epilepsy is compounded by distance, workforce shortages, underfunding of services compared to the city, fragmented services, transport disadvantage, cost pressures and limited access to ongoing supports after diagnosis.”
“A fair and effective Australian response to epilepsy must work for people wherever they live, whatever their postcode. For rural Australians, that means bringing care, support and system investment closer to home.”
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The alliance said patients often travelled long distances for neurologist appointments, scans and follow-up reviews, delaying diagnosis and disrupting continuity of care.
Research cited in its submission found only one of 24 first seizure clinics across Australia and New Zealand was located in a regional area, with some patients waiting up to 56 weeks for specialist assessment.
“The Alliance recommends that the Australian Government invest in equitable first seizure pathways for rural, regional and remote communities. This should include telehealth-enabled first seizure clinics, specialist outreach where appropriate, clear referral pathways from general practice and emergency departments, timely access to electroencephalography (EEG) and magnetic resonance imagining (MRI), and investment in epilepsy nurses and care coordinators,” the alliance said in its submission.
“Nurse practitioners with advanced training in epilepsy care could support timely assessment following a first seizure, coordinate access to investigations, provide education and safety planning, and contribute to ongoing review closer to home. Rural patients should not be required to wait longer or travel further for the early assessment that can shape the trajectory of their epilepsy care.”
The Royal Australian College of General Practitioners said GPs were increasingly managing complex epilepsy cases because specialist support was difficult to access.
“Too many patients face long waits to see neurologists, difficulty accessing diagnostic testing, and significant financial pressure from specialist fees, travel costs and ongoing treatment needs,” RACGP president Dr Michael Wright said.
“This is particularly challenging for people living in rural and remote communities.”
Dr Wright said GPs were often the first point of contact for people experiencing seizures and continued to coordinate care long after diagnosis.
The college is calling for a 40% increase in Medicare rebates for longer GP consultations and greater investment in culturally appropriate education, research and support services.
Neurologists and epilepsy specialists also warned many hospital admissions could be prevented through earlier diagnosis and faster access to care. In a joint submission, the Australian and New Zealand Association of Neurologists and the Epilepsy Society of Australia described epilepsy as the fourth most common neurological disorder and highlighted significant delays for first seizure clinics, epilepsy clinics and EEG testing.
The specialists warned delays in diagnosis and treatment were contributing to avoidable emergency presentations, hospital admissions and epilepsy-related deaths, including Sudden Unexpected Death in Epilepsy, which occurs in about one in every 1000 people with epilepsy each year.
The federal government pointed to its new Chronic Conditions Prevention and Integrated Care Program, backed by $109.9 million over three years from 2026-27, as part of broader efforts to improve chronic disease management.
But health groups said meaningful reform would require better access to specialists, diagnostics and coordinated care, regardless of where Australians live.
See all the submissions and details of the inquiry are available here. A final report is due by September 2026.
