10 September 2026

Australians with epilepsy are waiting months, and in some cases more than two years, to access specialist care, putting them at risk of avoidable hospitalisation, injury and death.

The Australian and New Zealand Association of Neurologists (ANZAN), which is a specialty society of the Royal Australasian College of Physicians (RACP), and the Epilepsy Society of Australia (ESA), the Australian body of healthcare professionals and researchers working in epilepsy, are calling for urgent national action to address dangerous gaps in epilepsy diagnosis and treatment.

ANZAN President Dr Michelle Kiley said “We cannot continue with health care systems where people experiencing potentially life-threatening seizures are left waiting months, and more often years, for specialist care”.

Epilepsy affects approximately 166,000 Australians (0.6% of the population) and is associated with stigma, social isolation, co-morbidities such as anxiety, depression, cognitive impairment, and an increased risk of premature death, including the risk of sudden unexpected death in epilepsy (SUDEP). As such, access to timely diagnosis and specialist care is critical.  The longer people wait, the longer they remain at risk of further seizures, injury, hospitalisation and in some cases, preventable death.

“Being on a long waitlist not only may result in years of uncontrolled seizures, but also an inability to drive and/or work, which puts enormous pressure on patients and their families”.

Evidence presented in a joint ANZAN and ESA submission into the Senate Inquiry into Epilepsy in Australia, shows that in South Australia, patients wait an average of two and a half years for a new patient appointment at an adult Epilepsy Clinic. Other states are not faring much better, with wait times for such appointments being over a year in Victoria and Tasmania. In Western Australia, patients wait about one year to be seen in an adult First Seizure Clinic, which should ideally aim to assess patients within two weeks from their first seizure presentation.  

ESA President Professor Piero Perucca highlighted that the issues go beyond wait times in the outpatient setting.

“There are no dedicated epilepsy services in the Northern Territory or Australian Capital Territory, while patients in South Australia, Tasmania and Western Australia have severely limited access to video-EEG (video-electroencephalogram) monitoring and more advanced treatments for drug-resistant epilepsy”, he said.

According to the Australian Institute of Health and Welfare (December 2025), there were almost 30,000 epilepsy-related emergency department presentations across 2023-24, approximately half of whom required hospital admission.

“A substantial proportion of these could potentially be avoided through faster diagnosis, appropriate treatment and ongoing specialist care, which will also result in major economic savings”, Professor Perucca added.

A previous study (Lowerison et al. JAMA Neurol 2019) found that patients whose management involved a specialist epilepsy centre have a death rate that is half of those managed by non-specialists.

Both Dr Kiley and Professor Perucca agreed that “Lives are being lost; we cannot risk this becoming another report that sits on the shelf. We need change, urgently.

“Australia is in desperate need of a national epilepsy strategy. Urgent investment to expand public access to specialist care and multi-disciplinary clinics is needed so that patients with epilepsy can get the care they need, right now.”

Some of the recommendations from the joint ANZAN and ESA submission call for the Federal Government to:

• Establish a national strategy for epilepsy care, increasing capacity of epilepsy services in all states and territories, with a specific referral stream for individuals with drug-resistant epilepsy.
• Develop clear national referral criteria and service benchmarks for escalation to epilepsy-specific and comprehensive epilepsy centre assessment.
• Improve access to regional and remote epilepsy services by improved telehealth access, and improved Medicare reimbursement for basic essential services such as EEG.
• Invest in culturally safe, multidisciplinary epilepsy pathways delivered in partnership with Aboriginal Community Controlled Health Organisations.
• Expand the epilepsy workforce with investment in Neurology Specialist training, general practitioner (GP) education and training and an expansion of the Epilepsy Consultant Nurse network.
• Establish government-funded early-career research fellowships for junior epilepsy investigators to build the next generation of internationally leading epilepsy researchers.
• Create a Commonwealth fund to support the development of new epilepsy therapies to address the stagnating seizure outcomes in the treatment of epilepsy
• Establish government-funded critical infrastructure for a national epilepsy registry and data platform, enabling inclusive and nationwide contributions.