Epilepsy awareness

Mr DULUK (Davenport) (15:44): I rise today to acknowledge national epilepsy Purple Day, held each year on 26 March. Purple Day is an important annual event, with people not only wearing purple, like you are today, Deputy Speaker, but holding local community events, fundraising and working together to increase awareness and understanding of epilepsy and the need for increased funding to support individuals and families affected by epilepsy. Last Sunday, 26 March, the Epilepsy Centre hosted a family day at the Entertainment Centre. Whilst it was a fantastic and fun day, it is important that we remember the very serious and important motives that underlie the need for Purple Day.

Nine-year-old Cassidy Megan of Nova Scotia in Canada started Purple Day in 2008 because she wanted to raise awareness about epilepsy and she wanted other kids with epilepsy to know that they are not alone. That is why, as I have been saying, we celebrate world Purple Day on 26 March. It has become an important opportunity to draw attention to the prevalence of epilepsy within our community and what we can do as a government and as a society to help those living with epilepsy. Deputy Speaker, as you know, we can do a lot.

Around 61,000 South Australians are affected by epilepsy, suffering periodic fits or seizures. The severity and regularity varies from each patient, but for many it is debilitating not just for the individual but also for their family. I have been fortunate enough to get to know young Archer and his family, who live in my electorate. Archer featured on the ABC News last Sunday discussing how epilepsy affects him. Archer is just like any young boy. He likes to play basketball and watch Star Wars movies, but epilepsy makes life for him a lot harder. Unfortunately, Archer has a lot of seizures. He has spent a considerable amount of time in hospital and regularly travels to Melbourne to see a specialist and receive treatment. Some days, he cannot go to school, and on the worst days he has to go to hospital. Sadly, Archer is not alone.

In June last year, I moved a motion in the house calling on the government to adequately fund epilepsy services. The Epilepsy Centre, led by CEO Robyn Wakefield, another wonderful constituent of mine, does a superb job providing support for people living with epilepsy, their families and their carers. You do not need to scroll down too far on their Facebook page to appreciate the enormous level of gratitude felt for the Epilepsy Centre. However, they do this outstanding work with very limited funding and, indeed, without any state government funding at all—not a single dollar.

Their main source of funding is a call centre in Prospect, which telemarkets lotteries and donation campaigns. The Epilepsy Centre is staffed by only two registered nurses and three social workers, who all work part-time. These dedicated staff work out of some of the major hospitals, but they are paid by the centre. I cannot speak more highly of the work the centre does, especially with such limited resources.

Unfortunately, the Weatherill Labor government has continued to ignore the Epilepsy Centre's request for assistance. They have continued to ignore the community's request for assistance, and they have also ignored my requests for assistance for the centre, but we are not deterred. We will continue to fight the South Australian families living with epilepsy. Without funding and without a proactive government, these South Australian families will continue to miss out on much-needed assistance and access to innovative new practices and medication.

The Victorian Epilepsy Foundation receives about $1.2 million annually in state government funding. Last year, dozens of Victorian children with severe epilepsy were recruited to participate in a medical marijuana trial. This followed a New South Wales government announcement that children with severe epilepsy could access a medical cannabis, called Epidiolex, that has shown positive results in US trials. In October 2016, a world-first trial of medical marijuana gel to reduce uncontrolled seizures for adults with epilepsy commenced in Melbourne.

South Australians living with epilepsy, like my friend Archer, already regularly visit Melbourne to receive specialist treatment that is either unavailable in our state or they face unacceptable waiting periods. If we are not careful, they will join the many thousands of South Australians who are turning their back on the state each year and decide to move to Victoria, leaving in search of better opportunities, fed up with a tired Labor government that lacks initiative and is slow to react and too arrogant to listen to those who they represent.