166,000 Australians face 2.5-year epilepsy clinic waits

For healthcare leaders, a 2.5-year average wait for an adult epilepsy clinic appointment is not just a patient-experience statistic, it is a measurable failure of access, triage and specialist workforce capacity. Epilepsy affects 166,000 Australians and was linked to 322 deaths in 2023, yet it consistently loses out on funding and attention to higher-profile neurological conditions. With a Senate inquiry due to report on 17 September 2026, health systems face pressure to redesign referral pathways, expand telehealth and justify the case that earlier intervention cuts avoidable hospital admissions.

A Senate inquiry into Australia's epilepsy care system is set to hand down its findings on 17 September 2026, and the testimony and data released ahead of that deadline reveal a neurological condition that affects 166,000 Australians yet remains chronically underfunded, stigmatised and, in the words of one patient, 'pushed under the counter.' The catalyst for renewed scrutiny is a profile of Dawn Kenny, a 72-year-old Adelaide resident, whose 40-year search for the cause of her seizures has become a case study in the human cost of delayed and fragmented neurological care.

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Research by the Australian and New Zealand Association of Neurologists and the Epilepsy Society of Australia puts the average wait for an adult epilepsy clinic appointment in South Australia at two-and-a-half years.

Kenny's story is a catalogue of system failures. She took cocktails of medications and endured what she describes as horrific side effects, at times suffering as many as 20 seizures a day. More than five years passed before she was formally diagnosed with epilepsy, and the underlying cause of her disease remained a mystery for decades, complicating treatment. Despite living in a capital city, she waited months between appointments and travelled hundreds of kilometres between doctors, neurologists and hospital stays, ultimately flying to Melbourne for a rare surgery because the help was not available in Adelaide. 'There are brilliant doctors here, but the funding just isn't there,' she told AAP.

The scale of the problem extends far beyond a single patient. Research by the Australian and New Zealand Association of Neurologists and the Epilepsy Society of Australia puts the average wait for an adult epilepsy clinic appointment in South Australia at two-and-a-half years. Epilepsy is the fourth most common neurological condition in the country, behind only migraines, strokes and dementia, yet it receives a fraction of the public attention and resourcing those conditions command. The Australian Institute of Health and Welfare's most recent tally attributes 322 deaths to epilepsy in 2023. Although the condition is not usually fatal, advocacy groups argue that long diagnostic waits directly increase the risk of premature death and drive up avoidable hospital admissions.

The economic argument is central to the campaign for change. Advocates contend that the savings generated by preventing avoidable hospital admissions will 'generate massive returns' on any public money the government invests in epilepsy infrastructure, research and treatment. That return-on-investment framing is deliberately tailored to a fiscal environment in which new health spending must be justified against measurable downstream savings. If the Senate inquiry endorses that logic, it could unlock funding for specialist clinics, faster diagnostic pathways, expanded neurology and epileptology workforces, and greater research investment, all of which would directly address the wait-time bottleneck Kenny experienced.