Jill Hall (Shortland, Australian Labor Party) Share this | Hansard source

The World Health Organisation has identified that epilepsy is arguably the most misunderstood, most stigmatised and most underresourced health condition in the world today. There are an estimated 60-plus million people with epilepsy in the world, including at any one time around 200,000 Australian citizens. While Australia has a great deal to be proud about in its medical treatment of people with epilepsy, there are many for whom current medical treatments are woefully inadequate. As many as 10 per cent of Australians with epilepsy have poor control of their seizures, and for a smaller percentage there is so little control that life is almost unbearable for them and for those who love and care for them. I have experienced this at a personal level. My sister-in-law has suffered from uncontrollable epilepsy since she was 10 years of age, and I know the impact that it has had on her and her family’s lives.

In countries such as the Netherlands and England, for people with uncontrollable or refractory seizures, programs exist that enable them to spend the time needed to be safely taken off all their medications and then reassessed and remedicated in light of the new diagnostic assessments. In conjunction with medical makeover and some social and employment support, help with developing independent living skills and whatever else is needed to get the person back on their feet with a chance of a better life. It is a more comprehensive approach than is offered anywhere in Australia. Once again, I can speak from experience, having worked with people with disabilities and epilepsy prior to coming into parliament.

Even where seizures are fairly well controlled, the truth is there is often an accompanying sense of shame and fear attached to this condition. There are many burdens borne by people who live with epilepsy which make it particularly difficult to diagnose and to deal with. Epilepsy is a very complex condition and manifests itself in many ways. People living with uncontrolled or refractory epilepsy suffer enormous and unnecessary pain and hardship.

It is time for us in Australia to accept the challenge and take steps to make the lasting changes to the lives of people with epilepsy and their carers, whose lives are impacted on in various ways. The recent mental health initiatives are a good example of what governments can achieve. Despite significant medical research and treatment initiatives, there has been a failure to address many of the issues facing people living with epilepsy.

The Joint Epilepsy Council of Australia, which is the Australian chapter of the International Bureau for Epilepsy, is a key player in the World Health Organisation’s global campaign. The JECA has asked that a national epilepsy working group be established and resourced to oversee a national public education program, in tandem with an applied social research program to ensure that the right messages are being targeted to the right people, and to develop strategies to address many of the issues faced by people with epilepsy based upon credible, rigorous applied social research.

Areas requiring urgent attention include looking at the impact of epilepsy in Aboriginal and Torres Strait Islander communities; developing a better informed and more workable national response to the transport and driving difficulties faced by people living with epilepsy; ensuring appropriate, timely diagnosis and assessment is possible for all Australians who experience seizures, not just those living in selected capital cities; and making it possible for people whose seizures are totally uncontrollable to access longer term, up to nine months, reassessment and treatment centres. The critical role of trained epilepsy counsellors working throughout Australia with state and territory epilepsy associations needs to be recognised and given consistent support by the states, led by the Commonwealth. We need to listen to expert groups such as the Epilepsy Society of Australia and the American Academy for Neuroscience and put an immediate end to prescribing and dispensing practices that are high risk to people with epilepsy.

The Joint Epilepsy Council has asked the parliament to form a parliamentary friends of epilepsy group. I am pleased to advise that this will take place. In conjunction with Senator Humphries, I will convene this group. We hope to launch it on 27 May this year. I hope that those people who are speaking in the debate will become members of this group because I believe it is a way by which we can make real changes. We will work to ensure that people living with epilepsy are able to be included in the mainstream life of Australia and, as the World Health Organisation global campaign puts it, ‘come out of the shadows’.

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