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Legislative Council - Fifty-Second Parliament, Second Session (52-2)
2013-09-11 Daily Xml
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EPILEPSY

The Hon. J.A. DARLEY (15:38): On 25 August, I was invited to attend a public meeting hosted by Epilepsy—Let's Talk About It, a group established by like-minded people suffering from epilepsy, either directly or indirectly, who hope to adjust the way epilepsy is treated in Australia. At this meeting, I was shocked to hear that South Australia was the worse of all the mainland states in regard to epilepsy treatment. South Australia is the only Australian state where there is no funding for epilepsy support services and, to make matters worse, there is no support by way of a disability support payment, as epilepsy is not considered to be a disability.

A mother who travelled from Victoria told us about the services available to her as a mother of a child with epilepsy. She explained that, upon diagnosis, her child was registered for the children's epilepsy program, and testing through EEG monitoring started almost immediately. As her child was part of the children's epilepsy program, she had access to dedicated staff who specialised in the treatment and management of epilepsy. Conferences are held monthly between parents and all staff, including nurses, neurologists, dieticians and paediatricians. An epilepsy support nurse is contactable five days a week, and at home respite services are provided.

In contrast, the services available in South Australia—a mere eight-hour drive away—are significantly inferior. Upon seeking medical treatment for a child who has suffered a seizure, many parents find that their children are placed on a waiting list to have the diagnosis of epilepsy confirmed. The average weight on this list is 12 months. Until a diagnosis of epilepsy is confirmed, patients are unable to access the few epilepsy services available in this state and parents must continue to watch their children suffer seizures, often chronically, without support or treatment. Even after serving the waiting period, people often find that South Australian hospitals have limited resources and lack the equipment required to make a full and proper diagnosis.

Once a diagnosis of epilepsy is finally confirmed, the resources are so limited that often people have to wait a further 12 months to see a neurologist. Every other state in the country has at least one epilepsy nurse. However, in South Australia parents find it difficult even to access information services that will help them understand what is happening with their child. Similarly, South Australia is the only state which does not offer long-term VEEG monitoring—which is essential to determining where a seizure originates in order to obtain a clear diagnosis—to children.

We heard story after story of the same thing—delayed diagnoses, inadequate treatment and shortage of medical specialists. Desperate parents, those lucky enough to be in a position to do so, often made the journey to Victoria to help their children. Tragically, we also heard a story about a 15-year-old girl who sadly died whilst waiting for an appointment to see a neurologist. Her parents shared with us how they had waited months to see a neurologist. Heartbreakingly, their daughter suffered a seizure whilst in the bathroom and drowned.

It is simply appalling and shocking that this young life has been lost due to the lack of funding for epilepsy services. Had the family lived in Victoria, she would have been registered with the children's epilepsy program after her first seizure, and treatment and management would have begun immediately. It is simply awful that South Australians are treated as second-class citizens. I hope that by talking about it more and spreading awareness about the issue, epilepsy services in this state will begin to improve.

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