Shayne Neumann (Blair, Australian Labor Party) Share this | Hansard source

Epilepsy affects approximately 50 million people across the globe. It accounts for one per cent of the burden of disease worldwide. Nearly 80 per cent of the burden of epilepsy is in the developing world. More than 80 per cent of the people in some developing countries receive no treatment at all.

Epilepsy is a very common but serious disorder of the brain. It is up there with depression, Alzheimer’s, dementia and other brain disorders in commonality. According to the World Health Organisation’s Global Campaign against Epilepsy report in 2005, it ranks with breast cancer in women and lung cancer in men in terms of commonality. This report makes it very clear that those people suffering from epilepsy are ‘forced into the shadows’. They suffer far more than seizures; they suffer from ‘fear, misunderstanding and the resulting social stigma and discrimination’.

The seizures are unpredictable but still many people do not understand that the disorder is noncommunicable. In ancient times those suffering from this disorder were considered to be suffering from demonic influence or possession and treated as outcasts—lepers, indeed. Many myths and superstitions abounded. One wonders whether reports in the Bible were really of epileptic fits rather than the casting out of demons et cetera.

Fortunately, we have moved on since then, but not far enough. In 1997 the Global Campaign against Epilepsy was launched by the World Health Organisation, in consultation with other bodies, ‘to improve acceptability, treatment, services and prevention of epilepsy worldwide’. In Australia, we need to acknowledge that one in 120 people suffer from epilepsy and that up to five per cent of people in our society may have a seizure at some time in their lives. Unfortunately, it is usually only when seizures are recurrent that diagnosis occurs. Often epileptic seizures are put down to febrile convulsions or some other cause. Many people outgrow epilepsy or go into long-term remission, suffering no further seizures. In other words, epilepsy is not always a lifetime condition. That is a fact not always understood.

In my family we have had our own experience. In Maryborough on 26 December 1990, my eldest daughter, Alex, had seizures. After fitting for some time she lay motionless in my arms, lifeless, as I took her to the Maryborough Base Hospital. She was hospitalised for many days. My wife was pregnant with our second daughter. I did the night shifts and Carolyn, my wife, did the day shifts. Subsequently, Alex had further seizures in Ipswich, our home town, and was hospitalised yet again. I worked out then that medical diagnosis was problematic, confused and often difficult.

Alex was put on Epilim and she was on it for a long time. Her prognosis was uncertain, and we lived with the memory and with fear and anxiety about what might happen in the future. Fortunately for Carolyn and me, Alex has become seizure free and she no longer requires medication. She is now a very happy, healthy and opinionated young woman of nearly 19 years of age. But the experience for me is seared into my brain and, as a parent, I will not forget it as long as I live. It is one of those memories I will take to my grave. I can barely imagine what life must be like for those parents and children who suffer and for sufferers generally. I only suffered it vicariously.

We must help. We must do more. We must lift the veil of ignorance. We must fund more research. We must engage in education programs to improve community awareness. We must encourage philanthropic donations and support families and individuals better with confidence-building assistance and practical help. High-profile sufferers such as Wally Lewis, the Australian test rugby league great, have brought home the message that epilepsy can strike anyone.

It is not just specialist surgical cases which must be the focus. We need programs in Australia to enable us to spend time getting people off medication and then reassessing them and remedicating them when necessary after a new diagnosis has been undertaken. They have these programs in western Europe but not here. I urge the federal government to heed the voice of the Joint Epilepsy Council of Australia in this regard. Community health centres are an ideal way to assist people. I think that the government’s super GP clinics can play a role in promotion, education and medical service delivery and I call on the government to place a greater emphasis on dealing with this very important issue accordingly.

See this speech in context