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

I would like to congratulate the member for Solomon on his fine contribution in relation to epilepsy. On Wednesday, 28 May, we launched the Friends of Epilepsy here in Parliament House. The decision to form the parliamentary Friends of Epilepsy came as a result of my having spoken to Jacinta Collins, the chair of the Joint Epilepsy Council of Australia. She convinced me of the need for such a group. She referred to the World Health Organisation campaign, which identified epilepsy as arguably the most stigmatised and the most underresourced health condition in the world today, with 60 million people world wide suffering from the condition.

In Australia there are around 200,000 people with epilepsy at any one time. These are people like the member for Solomon’s sister and my sister-in-law, who have lived their lives affected by epilepsy in many different ways. It affects their standard of living, their life choices, their occupational choices and their employment opportunities. It has an impact on their general health. As well as that they have to live with the stigma of having epilepsy.

The launch was attended by over 40 people from all around Australia. These were people who had been associated with epilepsy in one way or another. As well as that, we had members of parliament in attendance. The keynote speaker at the launch was Christine Walker, from the Chronic Illness Alliance, on behalf of the research working group of the Epilepsy Foundation of Victoria. She highlighted many needs in relation to epilepsy, such as the need for social research into epilepsy in Australia. A research project was undertaken in 2006-07 that looked at the impact of living with epilepsy. The research explored the impact on community attitudes and it went on to discuss with the participants matters concerning barriers and the way it affected their lives. In a country town those who have seizures cannot play sport and people avoid them—this was all brought out at the launch.

Australia has a world-class health system and epilepsy, unfortunately, does not receive enough attention from governments, or at a community level. Epilepsy Australia has adopted a research agenda and the Epilepsy Foundation of Victoria has a working group. That is where Christine Walker was involved.

The Friends of Epilepsy want to raise awareness and put epilepsy right there on the agenda. We want social research into epilepsy in Australia. We want people in Australia to understand what it is like for Australians who suffer from epilepsy—how just the simple fact of getting around is very difficult in such a car-dependent society as we have here in Australia.

Employment and education are impacted on enormously by epilepsy. Children who suffer from epilepsy have their schooling interrupted and later in life that impairs their ability to get jobs. Quite often the only jobs that they can get are casual ones. My sister-in-law has, in her whole working life, never had a permanent job. Epilepsy acts as a barrier, it leads to social exclusion and it impacts on the quality of people’s lives. I learnt a great deal last Wednesday. I learnt how epilepsy had impacted on the lives of many of the people who attended the launch. In fact, I spoke to two mothers who had lost their sons. The launch was the start of Friends of Epilepsy and it will become a strong group within this parliament. It will raise awareness, not only that of members and senators but also that of the Australian community as a whole. It is time we put aside our fears and prejudices and undertook the research that will lead to a cure for epilepsy and the control of it. This disease affects over 200,000 Australians and their families. We can ignore it no longer.