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Epilepsy Awareness Motion

Mr WINGARD (Mitchell) (12:05:30):  I rise today, too, to commend the member for Davenport for bringing this motion before the house to:

            (a)        recognise Purple Day in support of epilepsy awareness;

            (b)        acknowledge the work of community members who raise the issue of epilepsy awareness; and

            (c)        call on the state government to adequately fund epilepsy services, research and diagnosis.

Yet again, this is another area where South Australia sadly sits at the bottom of the table in support of people with epilepsy, as South Australia and the Northern Territory are the only states that do not receive government funding to support children and families with epilepsy. Epilepsy is not recognised as an eligible disability in these states and 61,000 people live with epilepsy in South Australia and the NT. We know of the great work that the Epilepsy Centre does to continue to support those people.

As the member for Davenport pointed out, and I think it should be noted in the house again, the suicide rate amongst youth living with epilepsy is 25 per cent higher than the general population due to difficulties in securing employment, keeping friendships and holding a driver's licence. It is a life of uncertainty which no-one should endure. Epilepsy can affect anyone of any age. The member for Davenport, in my opinion, has done a great thing to bring this to the attention of the house.

In my community, I have been working with some people who have done some wonderful work in helping to raise the awareness of epilepsy in the community. I know there are a number of groups out there that do some outstanding work in this field, but I would like to acknowledge Kerry Smith and her family. Earlier this year, I went to the launch of a group that they establish called Epilepsy Awareness Relationship Support (EARS) group.

Kerry has done a wonderful job. Her mother has epilepsy and has lived with epilepsy for a long, long time. Kerry is a mother of two and her mother was diagnosed when she was 15 and has suffered from grand mal seizures for most of her life. Kerry has been very frustrated in trying to find access resources to help her and other people like her deal with someone in their family who has epilepsy. She was so frustrated with the lack of awareness and information that was not available to people and families who had someone with epilepsy in their family that she went out and set up this support group, and I do really commend her for doing that.

I did go to her launch, which was held at the ADRA Café Community Centre in Melrose Park, and Kari who works there did a wonderful job in coming along and supporting Kerry and her family by putting this awareness group together. In fact, Kari made mention that her mother had suffered from epilepsy as well, so she had a very strong affinity with what Kerry was trying to achieve. Kerry's partner, Bronte, has worked very hard also, along with Kerry's children, to put together a Facebook page to help keep people aware of what is going on with epilepsy and also to offer that support because of how tough it is for families and people who are supporting someone who has epilepsy. They are having regular meetings at the ADRA Café. It was great to be offering that sort of support and it was wonderful to go along and lend my support to what they were trying to achieve.

Ultimately, what they were looking to do was to gain more understanding of epilepsy. They wanted to meet with others who have had epilepsy impact their lives. They wanted to hear about other experiences and what people have learned. They felt very much that by sharing thoughts, ideas and experiences that would help grow the group and grow the understanding of how to deal with and how to help people with epilepsy living in a family situation. They were very strong on listening and having guest speakers along as well to hear about other subjects relating to epilepsy. They just wanted to create a relaxed environment where they could sit down, have a cuppa, share, converse and tell their stories, which was wonderful.

They also wanted to work towards helping with fundraising for events, much like Purple Day on 26 March.

They were heavily involved with getting purple packs together, getting them out into schools and trying to make the schools aware of epilepsy and keeping it at the very forefront of people's minds.

With that, again, I would like to commend Kerry Smith and her family for the wonderful work they do. The member for Davenport has outlined more detail on the background of the funding, or the lack of funding, for epilepsy here in South Australia, and I think it is really important that we make note of that. We heard the story that the member for Davenport told about a family and their child. Kerry explained to me a little bit about the sleeping mats that they often have, and I know a lot of the money raised by the Epilepsy Centre goes towards providing families with these seizure monitors. They cost about $900, and it is quite incredible what they do.

I think they source them from Finland, but I have been told that someone in South Australia is looking at trying to develop these. It would be great to have a South Australian connection to bringing down the cost and potentially making an even better seizure monitor. They put these mats under the beds, of young children in particular, and they can detect movements and seizures in their sleep. It is of great benefit. To be living alongside the monitor, as a parent I cannot imagine how gutwrenching that would be throughout the night to hear those monitors go off and to know that your child is having a seizure.

I had a couple of friends growing up who had epilepsy and I know the tough times and the struggles they went through and I commend them for the way they fought this. Again, that was my childhood, it was a long time ago, and they were going through it with fewer resources and less support than now.

I support this motion that the member for Davenport has brought to the house and I want to acknowledge, as it says in point (b) of the motion that we acknowledge the work of community members who raise the issue of awareness. I point out the great work that Kerry has done in that. Purple Day in March is a great initiative to keep people aware of epilepsy in our community, but calling on the government to adequately fund epilepsy services, research and diagnosis is a really key point to this motion.

I stress the point that this is an area where South Australia sits once more at the bottom of the table, and it is not a table on which we should sit at the bottom. People living with epilepsy do it hard, and when and where we can support them and get resources for them and help them live a better life, I think is only a good thing. I also note the great work that the Epilepsy Centre does in raising funds to help provide not only these mats but other tools and aids that can help people living with epilepsy. It must be commended. Once again, I commend the member for Davenport for bringing this motion to the house and I fully support it.

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