Train Australian hospital staff in rare epilepsies
The issue
Within the last few weeks, I have seen my health rapidly decline due to my epilepsy. My personal experience with Doose syndrome, an extremely catastrophic and rare form of epilepsy, has been both harrowing and life-threatening. At times, I endure up to 100 seizures a day, some demanding swift ICU admission and resuscitation. This experience, however, is exacerbated by the lack of trained professionals who can accurately recognise and treat such rare forms of epilepsy in EEGs and clinical presentations.
Doose syndrome, along with other rare epilepsies, often goes unrecognised and misdiagnosed due to a lack of specific knowledge and training among healthcare professionals. In Australia, the absence of national clinical training standards in recognising and treating rare epilepsies significantly hampers our healthcare system's ability to provide timely and efficient emergency care.
Statistics indicate that rare epilepsies affect approximately 30% of epilepsy cases, which equates to thousands of Australians. Despite their rarity individually, collectively, they form a substantial part of the population facing severe health challenges. Training our medical staff in recognising these conditions is not just beneficial but crucial for enhanced medical care and patient safety.
We are calling upon the Australian healthcare authorities to implement national clinical training standards that will equip our medical workforce with the skills and knowledge needed to properly diagnose and manage rare epilepsies, including Doose syndrome. This can be achieved through continuous education programs, specialised workshops, and updated medical coursework focused on these conditions.
By initiating these training measures, we will be significantly improving the diagnosis and emergency care available to individuals with rare epilepsies, ensuring they receive the urgent and precise medical attention they deserve. This shift could greatly reduce the number of preventable complications and fatalities, providing a lifeline to many suffering from these debilitating conditions.
Please join me in urging the Australian healthcare system to adopt comprehensive training programs for rare epilepsy recognition and care. Your support can make a significant difference in the lives of people affected by rare epilepsies. Let's ensure that everyone gets the care they need, when they need it the most.
Sign this petition to make a change and improve the outcomes for everyone with rare epilepsies in Australia.
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The issue
Within the last few weeks, I have seen my health rapidly decline due to my epilepsy. My personal experience with Doose syndrome, an extremely catastrophic and rare form of epilepsy, has been both harrowing and life-threatening. At times, I endure up to 100 seizures a day, some demanding swift ICU admission and resuscitation. This experience, however, is exacerbated by the lack of trained professionals who can accurately recognise and treat such rare forms of epilepsy in EEGs and clinical presentations.
Doose syndrome, along with other rare epilepsies, often goes unrecognised and misdiagnosed due to a lack of specific knowledge and training among healthcare professionals. In Australia, the absence of national clinical training standards in recognising and treating rare epilepsies significantly hampers our healthcare system's ability to provide timely and efficient emergency care.
Statistics indicate that rare epilepsies affect approximately 30% of epilepsy cases, which equates to thousands of Australians. Despite their rarity individually, collectively, they form a substantial part of the population facing severe health challenges. Training our medical staff in recognising these conditions is not just beneficial but crucial for enhanced medical care and patient safety.
We are calling upon the Australian healthcare authorities to implement national clinical training standards that will equip our medical workforce with the skills and knowledge needed to properly diagnose and manage rare epilepsies, including Doose syndrome. This can be achieved through continuous education programs, specialised workshops, and updated medical coursework focused on these conditions.
By initiating these training measures, we will be significantly improving the diagnosis and emergency care available to individuals with rare epilepsies, ensuring they receive the urgent and precise medical attention they deserve. This shift could greatly reduce the number of preventable complications and fatalities, providing a lifeline to many suffering from these debilitating conditions.
Please join me in urging the Australian healthcare system to adopt comprehensive training programs for rare epilepsy recognition and care. Your support can make a significant difference in the lives of people affected by rare epilepsies. Let's ensure that everyone gets the care they need, when they need it the most.
Sign this petition to make a change and improve the outcomes for everyone with rare epilepsies in Australia.
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Petition created on 12 February 2026