Brainwaves Ed 76, 2026

Dear Friends

A Defining Moment: Senate Inquiry into Epilepsy

As mentioned in our last Brainwaves Newsletter we are at a pivotal moment for our sector.

The Australian Government has announced a national Senate Inquiry into epilepsy — a significant and rare opportunity to strengthen understanding, policy, and systems of support for people living with epilepsy.

This is an opportunity to turn lived experience and professional insight into meaningful, system-level change.

Why this matters

Epilepsy affects over 250,000 Australians, yet many people continue to experience:

• Delays in diagnosis and access to care
• Inconsistent support across systems
• Limited awareness and understanding
• Barriers to treatment and innovation
• Ongoing safety risks, including SUDEP

Submissions close 15 May 2026 — so if you are considering contributing, now is the time.

Epilepsy affects over 250,000 Australians, yet many people continue to experience:

• Delays in diagnosis and access to appropriate care
• Variability in support across regions and systems
• Limited awareness and understanding in the community
• Barriers to accessing emerging treatments and technologies
• Ongoing safety risks, including SUDEP (Sudden Unexpected Death in Epilepsy)

This Inquiry provides a structured pathway to bring these issues forward and contribute to meaningful, system-level improvement.

Where to start

We’ve created a central page with everything you need:

👉 Start here:
https://epilepsytasmania.org.au/senateinquiry/

From this page you can:

• Understand the Inquiry
• Watch the webinar series
• Download submission templates
• Access guidance on how to contribute

We can help

We are supporting individuals, clinicians and organisations who are considering contributing to the Inquiry.

If you would like to:

• Sense-check your approach
• Align your submission to the Terms of Reference
• Talk through ideas or recommendations

then email senateinquiry@epilepsytasmania.org.au and we can assist you.

A defining moment

This Senate Inquiry represents a defining moment — not only for individuals and families living with epilepsy, but for clinicians, organisations, and the broader system that supports them.

It is rare to have an opportunity where lived experience, clinical insight, and system knowledge can come together in a way that directly informs national policy.

If you are a clinician, this is an opportunity to ensure your experience of the system — what works, what doesn’t, and what needs to change — is clearly heard.

If you are part of an organisation, this is a moment to contribute to shaping more consistent, effective, and equitable models of care.

And if you know someone living with epilepsy — a patient, a client, a colleague, or a family member — please consider sharing this opportunity with them.

We are hopeful that through collective contribution, this Inquiry can lead to practical, meaningful improvements in safety, care, and quality of life for people living with epilepsy across Australia.

Thank you for taking the time to engage with this work.

Warm Regards,
Paul Quilliam CEO

P.S. If you haven’t had a chance to explore the Inquiry yet, here are three quick ways to get started:

👉 Start here (everything in one place):
https://epilepsytasmania.org.au/senateinquiry/

🎥 Watch the webinar series (understand how to contribute):
https://www.youtube.com/playlist?list=PLCaFMR0KqP676fgnyrxqsc9jLhk9fkYUX

🏛️ View the official Senate Inquiry:
https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia