Epilepsy is one of the most common chronic brain conditions, affecting how people think, work, learn and live. Without reform, the projected cost over the next decade is stark: 15,227 deaths and nearly A$19.9 billion in healthcare costs by 2033.

Australia has a strong national record in epilepsy research. In 1995, Australian researchers identified the first epilepsy gene, opening the way for genetic diagnosis and changing epilepsy care worldwide. This is reflected today across AI-assisted imaging, clinical trials, genetic research and evidence-based service models. In practice, Australian patients often experience delayed diagnosis and unequal access to coordinated epilepsy services. AAHMS’s submission to the Senate inquiry examines the barriers to diagnosis and care, and identifies the mechanisms needed to address them:

• A national time standard for specialist review after a first suspected seizure
• Hybrid care models able to combine in-person initial assessment with telehealth for ongoing management – ensuring that rural, remote and regional patients can access the same expertise as those in metropolitan centres
• A research-active workforce embedded within epilepsy care settings
• A nationally coordinated workforce of specialist nurses with expertise in complex epilepsies
• Sustained workforce funding to train and retain neurologists, epileptologists and future epilepsy researchers.

Commonwealth investment is supporting major epilepsy research, including through $30 million in MRFF funding announced in May 2026 – bringing total investment in the Australian Epilepsy Project to $60 million. Translating this investment into better outcomes for patients will require targeted support for the specialist workforce and the service infrastructure needed to embed research in routine practice, alongside the platforms and technologies that enable this.

The National Health and Medical Research Strategy 2026–2036 provides a timely foundation for this. Its commitments to embed research as a core function of the health system, strengthen clinician researcher career pathways, and expand hybrid, telehealth-enabled models of care are directly relevant to the needs of epilepsy patients – presenting an opportunity to close the gap between research and care delivery.

 

Download the full submission below: