Senate Community Affairs References Committee - Melbourne, VIC (part 2 of 2)
3 August 2026
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Senate Community Affairs References Committee Australian Parliament
00:00 - 02:36
Speaker 1
SUDEP parents who have recommendations for change. There are real inconsistencies in how children with seizures who attend hospital are managed, and this is in itself a cause for alarm. If you go to hospital to emergency and you see a neurologist, you're automatically then sent for a brain scan and other tests, even if you've only had one seizure. But if you present to emergency and see an ED doctor, then you'll be sent home with no tests and no referral to see a neurologist, which is just not right. Lucia was 13 when she died.
If she'd been 16, she would have been referred to the Alfred Hospital seizure clinic. Many major hospitals in Australia don't have a first seizure clinic run by trained paediatric neurologists with access to EEGs and other more involved evaluation modalities. So I believe that the following actions could be taken in order to save lives. Please make it easier for doctors to diagnose epilepsy and educate them on the 40 different types of epilepsy. As seen in Lucia's case, the risks are just too high and the diagnosis really needs to be quicker.
Please investigate all seizures regardless of the age of the patient or the number of seizures that they've had, and listen to families and don't dismiss their concerns, because we know our kids. All patients and parents need to be advised of the risk of SUDEP. Greater awareness will save lives. We need to raise awareness about SUDEP and help reduce the risks, because it's empowering for people to know. Epilepsy Action Australia has a SUDEP prevention list, and this should be shared with all patients and GPs across Australia.
There's also SUDEP prevention tools and seizure alerts that people should be advised about. And I think a full education and training program must be delivered to medical professionals, including GPs, paramedics, nurses, ophthalmologists, school staff, and maternal health nurses. Please help raise awareness and funding for SUDEP. There's no education or focus for SUDEP like there is currently for SIDS or heart disease or cancer or MND. And I suggest that the following actions could be taken.
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