Motions

Epilepsy Awareness

Mr DULUK (Davenport) (11:46): I move:

That this house—

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

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

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

Today, I would like the house to recognise Purple Day—and Deputy Speaker, I love that outfit; very good.

The DEPUTY SPEAKER: I was hoping someone might notice.

Mr Whetstone: Every day we notice you.

Mr DULUK: Yes, every day we do. Each year, on 26 March, people from around the world endeavour to raise awareness of epilepsy by wearing purple. Purple Day was started in 2008 by nine-year-old Cassidy Megan of Nova Scotia, Canada, because, in her words:

I wanted to tell everyone about epilepsy, especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else. I also wanted kids with epilepsy to know that they are not alone.

Purple Day has grown each year, with people not only wearing purple but holding events, fundraising and working together to increase awareness of the prevalence and the need for recognition of epilepsy as a condition. In South Australia, Purple Day on March 26 was a well-attended event at Bonython Park, where I was warmly welcomed by Robyn Wakefield, the CEO of the Epilepsy Centre, and many members of the epilepsy community who are here today—and I welcome you all to parliament.

Epilepsy is a well-known and relatively common medical disorder. In fact, I suspect that many in this house know or know of someone with epilepsy. Epilepsy is a common medical and social disorder with unique characteristics. It is a neurological disorder that manifests itself as fits or seizures due to abnormal electrical activity in the brain. The seizures can be almost unrecognisable but may also present with sudden recurrent episodes of loss of consciousness, sensory disturbances and convulsions.

The World Health Organisation acknowledges epilepsy as one of the most common neurological disorders in the world, affecting more than 70 million people worldwide and about 61,000 people in South Australia alone. Epilepsy does not discriminate. Whilst the highest incidence of diagnosis is in infants and the elderly, it in fact affects all ages and sexes. Although there are many known causes that include genetic, environmental and lifestyle factors, it is a condition that affects each individual very differently. The common factor that every person living with epilepsy shares in South Australia is that they are not a priority of this state government.

Living with epilepsy carries many negative social consequences. Many people are under the misguided notion that those living with epilepsy suffer a mental illness or are to be feared in case they suffer a severe seizure. This is particularly difficult for children living with epilepsy. The impact of epilepsy on children can affect academic achievement and behavioural and emotional adjustment. Teenage years are often plagued with the loss of independence and the inability to gain a driver's licence. It can also affect the ability of a young person to gain and maintain employment and training.

Sadly, due to the psychological and physiological effects of epilepsy, the suicide rate of young people living with epilepsy is much higher than in the general population. Epilepsy is a disabling condition. Federally, the Department of Social Services recognises epilepsy as a disability when it cannot be controlled with medication. Every part of your life and that of your family is impacted when you are living with epilepsy.

I became more aware of the issue of epilepsy in my community and in greater South Australia through my constituents Vickie and Glenn, and their son Archer. I would like to share their story with you this morning. In the words of Vickie:

It is one of the hardest things to put into words, but the best way I can explain to someone else what it is like to live with epilepsy is this…it's 2am, you are in a deep sleep and you are ripped out by the shrill sound of the seizure alarm going off. It's a sound that means our son is unconscious and having a seizure, so we not only have to get up, but be alert and function well enough to be able to get to him immediately and get him into the recovery position. It's the same sound that represents a possible ride in the ambulance if the seizure is what we call 'a big one' and requires the rescue medication.

It is the sound that could mean we will get to our son and find him not breathing. This can happen more than once a night. It is a sound that I hate. Our family has been on this epilepsy journey now for almost 7 years, and throughout that entire time, we have never gained any type of seizure control. Our son has what is known as refractory or uncontrolled epilepsy. We have tried and failed around 8 different drugs, all of which have had awful side effects, some worse than the seizures themselves. We battle daily with the stigma surrounding this condition, and the complete lack of awareness and understanding of the general public, and the part that [affects] our son the most, the lack of awareness and support from our education system.

Our son struggles to get through a full day of school, he is having multiple seizures daily, this [affects] everything from memory, coordination, ability to concentrate, to be able to interact and play with his peers, some seizures leave him unable to talk…daily in the classroom, [and he is let down] by a system that fails to recognise the condition itself. As a parent, I struggle with the knowledge and the very real possibility that is sudden unexplained death in epilepsy…I struggle with my son growing up with this condition without the adequate support he will need to navigate adolescence and the journey into the workforce without awareness and support.

I struggle with the prospect of my son possibly not being able to drive, not being able to live alone, and not being with someone at all times that can render medical attention and rescue medication when he needs it. As a parent of a child with uncontrolled epilepsy, I am afraid of what the future holds, and I am tired of the constant battles and having to fight for my son.

My constituent and her family are known to the Epilepsy Centre in South Australia, but the Epilepsy Centre can only do so much to help with limited resources available to it. The Epilepsy Association of SA & NT, or the Epilepsy Centre, is the major provider of neurological community support for people in South Australia. Since 1976, the Epilepsy Centre has had the mission to improve the welfare of those affected by epilepsy of those in South Australia and the Northern Territory.

The major source of funding for the Epilepsy Centre is a call centre in Prospect which telemarkets lotteries and donation campaigns. They also telemarket on behalf of other charities for a fee. the Epilepsy Centre actively seeks other financial support in order to provide services for those living with epilepsy. With the money raised from these efforts, the Epilepsy Centre is only able to employ one registered and one social worker part-time for three days a week.

For 61,000 South Australians, the Epilepsy Centre is available to provide a service of on registered nurse and one social worker part-time for three days a week. That is two part-time staff members per week, as I said, for 61,000 South Australians. I commend the Epilepsy Centre for the work they do with such limited resources. I do condemn the state government for its failure to provide the Epilepsy Centre with any government funding—not one single dollar. the Epilepsy Centre, the major provider of community support for individuals and their families suffering from epilepsy, does not receive one dollar in direct state government funding.

I have explained to the house how large the impact of epilepsy is on the individual and their family. It is sad how far behind South Australia is compared with other states and jurisdictions. In other parts of Australia, not only are the services much better and better funded, of course, but their governments recognise that primary care for people living with epilepsy is an investment in public health funding. They provide more treatment options, more support and more services.

Once again, South Australia's families are being left behind because of this Labor government's ineptitude. In contrast, Victorian families benefit from a range of services thanks to state government funding. The Victorian epilepsy foundation receives about $1 million per year to fund a large range of services to individuals and their families. The Epilepsy Centre of South Australia seeks to provide exactly the same services but, without government funding, it is simply unable to do so. South Australians living with epilepsy deserve better.

As I mentioned earlier, epilepsy is recognised as a disability by the federal Department of Social Services when it cannot be controlled with medication, but the state Labor government is the only state government in Australia that does not recognise epilepsy as a disability. Recognising epilepsy as a disability would give those living with epilepsy access to additional support services through the NDIS, access that would provide much relief to families of school-age children who live with epilepsy.

As the heart-wrenching story that I told a few minutes ago demonstrates, South Australian families suffer with sleepless nights, fear of the unknown and an inability to work full time to care for themselves and their children. The lost days of school due to seizures puts children at a big disadvantage. NDIS funding could help them keep up at school. Not only would families be assisted if epilepsy were named a disability in keeping with every other state, but also it would enable the Epilepsy Centre to raise awareness and fundraise at different levels.

Funding dollars are hard to find these days, as we all know. the Epilepsy Centre lost a generous corporate sponsor in recent years but, thankfully, another has come on board. I put it out to corporates in South Australia: if you are looking for a worthy cause to support and get behind, the Epilepsy Centre is most certainly one of those. The Epilepsy Centre operates an excellent service through its limited fundraising and sponsorship work, but recognising epilepsy as a disability would enable the organisation to help so many more individuals and families.

I urge the SA government to provide direct funding to the Epilepsy Centre and I urge the SA government to recognise epilepsy as a disability to enable access to the NDIS and to help the Epilepsy Centre to better attract corporate sponsorship. The benefits of improving the resources available to the Epilepsy Centre would be enormous, not just for individuals and their families who live with epilepsy but also for the state's health budget.

We are all too aware of the strain on South Australia's health system with hospital admissions above capacity, crowded emergency departments and the forced ramping of ambulance services at our suburban hospitals. But rates of hospital admissions could be reduced through greater attention to, and focus on, preventative care. There is a strong relationship between the quality of coordinated primary care in epilepsy management and the reduction of emergency visits. However, improvement can only be achieved through better health literacy and self-management amongst individuals living with epilepsy, increased regularity of GP check-ups and producing patient action plans.

Funding these types of programs would actually help reduce health expenditure in the long term in South Australia by, of course, minimising the cost of hospital admissions. I do acknowledge that not all hospitalisations for seizures are preventable, with 30 to 40 per cent of recurring seizures resistant to current treatment options. These seizures pose serious health consequences and can result in permanent brain damage or mortality. Under no circumstances can these situations be treated outside of hospitals' expert care.

As South Australia plans for a larger ageing population and changing lifestyle factors, which have increased demand for healthcare services, primary care for conditions such as epilepsy have never been so important. It is vitally important that the South Australian government takes a new approach, a caring approach, to preventative health measures in relation to epilepsy in this state. It will save time, it will save money, and it will save a lot of heartache. To meet the current demand, The Epilepsy Centre needs three full-time registered nurses and two full-time social workers.

These workers would help reduce hospital admissions, give families and individuals much needed support and help improve community understanding. I hope in time the state government can meet these needs. Once again, I call upon the SA government to recognise Purple Day, a world day for those living with epilepsy, recognise that epilepsy is indeed a disability and provide much-needed funding for the Epilepsy Centre.

Ms DIGANCE (Elder) (11:59): I am deeply honoured to be able to support Mr Duluk's motion that the house recognises Purple Day in support of epilepsy awareness, acknowledges the work of community members who raise the issue of epilepsy awareness, and calls on the state government to adequately fund epilepsy services, research and diagnosis.

I would like to acknowledge all the visitors in the gallery this morning. Thank you for your attendance. In particular, welcome to Vickie, Glenn and Archer. It is certainly heartrending to hear your story, and I am sure all of us lend our support, deservingly, to you. It is a very challenging time that you find yourselves in. By way of background, I do have some understanding of what you may be going through.

My background is that of a registered nurse prior to becoming a parliamentarian, and one of my three daughters, when she was younger, experienced fits of various kinds. It is a very frightening experience. I know what it is like to wake up and hear that noise, or to have them next to you and suddenly they are either rigid or flaccid because it often presents in so many different ways. Certainly, we extend our condolences to you for the situation that you are going through.

Purple Day is a grassroots movement dedicated to increasing awareness about epilepsy worldwide, and on 26 March people from around the globe are asked to spread the word about epilepsy by wearing purple. Deputy Speaker, I commend you for wearing purple today in recognition of this motion. Awareness campaigns such as Purple Day are a way for epilepsy associations to raise funding for research and support services for people with epilepsy and their families. These initiatives also help to reduce the ignorance and stigma that is and can be associated with epilepsy.

Between 3 and 4 per cent of Australians will have an epilepsy diagnosis during their lifetime. The number of people significantly affected by epilepsy in Australia is estimated to be approximately three million, with up to 50,000 people in South Australia. Epilepsy Australia and its state-based member organisations are the official Australian partners of Purple Day, joining up with other epilepsy organisations from across the globe, including Canada, USA, UK and South Africa, which all promote Purple Day.

In terms of funding for epilepsy services in South Australia, SA Health provides outpatient and inpatient services, including tertiary level medical diagnostic and treatment services for patients in South Australia with neurological disorders, including epilepsy. The recent establishment of a dedicated epilepsy clinic at the Lyell McEwin Hospital has greatly increased access and improved epilepsy services in the north of our state. A new electroencephalography machine, otherwise known as an EEG machine, with extended recording and video capacity, and the employment of electrophysiologists to provide EEGs of high technical quality, has contributed to improved diagnosis and treatment of epilepsy in the north. The hospital also provides education for admitted and non-admitted patients.

In addition, a new inpatient video EEG machine was recently provided to the Women's and Children's Hospital. This expanded service commenced in February 2014 and also included the employment of an additional clinical nurse consultant and a neurophysiology trainee. Further, where there are comorbidities or the epilepsy is severe, disability specific services, such as Novita and Disability SA, work in partnership with the local health networks to form a team of support.

Such investment and support directly benefit people with epilepsy through sustained neurological and neurophysiology services commensurate with other states and standards. Our minister has met with the Epilepsy Centre on a number of occasions to discuss services and recognises the significant contribution that the centre makes to the lives of those people with epilepsy through its advocacy and support programs, counselling, epilepsy management programs and care plan management, to name a few.

The Epilepsy Foundation of South Australia, a privately-funded organisation, promotes research and education in the social and medical aspects of epilepsy. While epilepsy is primarily considered a health condition in South Australia, it is recognised as a disability by the Department for Communities and Social Inclusion when epilepsy substantially reduces the functional capacity of a person to undertake everyday activities and it is permanent or likely to be permanent, uncontrolled and will not likely resolve with medical treatment and antiepileptic medications.

The South Australian government will continue to deliver specialist disability services to eligible people with epilepsy. With those few words and on a personal note, I would like to again thank you all for coming in today, and particularly Archer, thank you for being here.

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

That this house—

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

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

(c) calls 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 in 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).

Kerry has done a wonderful job. Her mother has epilepsy and she 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 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 sharing thoughts, ideas and experiences would help grow the group and grow the understanding of how to deal with and help people with epilepsy living in a family situation. They were very strong on listening, and having guest speakers along as well, and hearing 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 it would be throughout the night to hear those monitors go off and to know that your child was having a seizure. Growing up, I had a couple of friends 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 paragraph (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.

Mr DULUK (Davenport) (12:12): I thank the member for Elder for her contribution and I thank the government for their support on this motion. Indeed, I thank the member for Mitchell for his contribution. I know it is an area that he has a lot of interest in as well. I thank Archer, who is probably in my mind the champion of Davenport, for what he goes through. To Archer's family and everyone here in the gallery who is associated with epilepsy and Epilepsy South Australia, thank you for what you do. Thank you for the support you give to your families, friends and loved ones.

As I said, there are 61,000 people with epilepsy. For the vast majority of people, it is extremely manageable but for those for whom it is not, it is a real problem. Thank you for the support you give. In closing this motion, I would like to draw the house's attention to paragraph (c) where we like to call on the state government to adequately fund epilepsy services, research and diagnosis. With the state budget due on 7 July, it would be wonderful to see something within that state budget for epilepsy funding and services. With this motion, I am sure that will happen.

Motion carried.