International Epilepsy Day

Mr BELL (Mount Gambier) (10:42): I seek leave to introduce this motion in an amended form.

Leave granted.

Mr BELL: I move:

That this house—

(a) recognises International Epilepsy Day, also known as Purple Day, which was held on 26 March 2018;

(b) acknowledges the importance of raising awareness of the condition, as it affects about 61,000 people in South Australia;

(c) calls on the state government to recognise epilepsy as a chronic health condition and calls on the state government to provide funding for educational and awareness programs and to provide funding to the Epilepsy Centre.

This year, International Epilepsy Day, also known as Purple Day, was held on 26 March. Some 61,000 people have been diagnosed with epilepsy in South Australia alone. Epilepsy affects about 3 to 4 per cent of the population, so there is a fair chance that you know someone or know of someone who lives with epilepsy. Epilepsy affects more people in our community than cerebral palsy, multiple sclerosis, Parkinson's disease, muscular dystrophy and blindness combined. Such an outstanding statistic further demonstrates the importance of Purple Day and its purpose to raise awareness of the condition and of all the people it directly and indirectly affects.

To define epilepsy, according to the national leading body of epilepsy support, Epilepsy Australia, epilepsy is a disorder of brain function that takes the form of recurring convulsive and non-convulsive seizures. Epilepsy is not just one condition; rather, it is a diverse family of disorders comprising many seizure types. There are over 40 different types of epilepsies and epilepsy syndromes. To put into perspective the effects that epilepsy can have on an affected person and their family, I will speak today of an epilepsy advocate in my own community of Mount Gambier: eight-year-old Ella and her mother, Katherine Height.

Ella is a bright and bubbly young girl who, in 2015, was diagnosed with the rare genetic disorder, GLUT1 deficiency—a disorder affecting just 1 in 400 people. Ella's condition prevents her brain from absorbing glucose properly, which in turn triggers seizures when her brain is starved of energy. Ella suffered her first seizure at three months of age while sitting on the lap of her mother. Ella turned blue and slumped forward. This episode was initially diagnosed as being caused by a viral infection.

Ella continued to develop as normal, hitting all the milestones of a young child, although she was still suffering through these blank events. Then on one terrifying day, the day of the local Christmas parade, Ella experienced her first tonic-clonic seizure, in which she lost consciousness before going through muscle convulsions, which lasted less than two minutes. Four months later, Ella finally had an appointment to see a neurologist. By this time, Ella had experienced seven seizures in 24 hours. What followed was a series of procedures and the prescribing of a loading dose of medication to control the seizures. Ella was finally diagnosed with her GLUT1 deficiency disorder. Ella's mum describes this time as follows:

It was so hard to see her go through the procedures, they were helping and hurting her at the same time, but we had to keep going until we knew what was wrong.

Ella is now on a strict ketogenic diet—high in fats but low in carbohydrates and protein. Ella will also need to take anti-epileptic medications for life. Every three months, Ella travels to Adelaide to see four different specialists, who are managing her condition and giving her the best possible quality of life. These appointments take two days, and the only financial assistance that is received for these trips is through the Patient Assistance Transport Scheme (PATS). Katherine says:

It has been really hard, especially the bigger seizures. I tend to put a block up about them because it just brings back too much pain. It is something that I've come to learn and get really passionate and a little angry about.

Her passion is no more evident than in the creation of the initiative Ella's Purple Promise, a foundation through which Katherine and Ella raise awareness of epilepsy and also raise funds for the Epilepsy Centre. Through Katherine's dedicated efforts, an epilepsy awareness information session will be held in Mount Gambier at St Martin's Kindergarten on 7 and 8 August.

This has only been made possible by the money that Katherine fundraised by holding a golf day earlier this year in the name of Ella's Purple Promise. Katherine has more fundraising events planned, include a movie night and another major fundraiser to coincide with International Epilepsy Day next year. I commend Katherine and Ella for all they have done to spread awareness of the condition. They are true advocates for epilepsy and for the Mount Gambier community at large.

South Australia is well overdue in supporting those living with the sometimes debilitating condition of epilepsy, particularly those in regional South Australia. South Australia and the Northern Territory are the only state and territory in Australia that do not receive state government funding to support more than 61,000 epileptics and their families living in South Australia and, additionally, 8,000 living in the Northern Territory. Currently, the leading support centre that assists South Australian and Northern Territory epileptics and their families is the Epilepsy Centre.

This centre was established in 1976 by a small group of parents, and for over 40 years it has provided invaluable support by way of counselling and psychological support, developing care and management plans and providing individual workplace, school and family training. The dedicated nursing team at the centre also provides epilepsy first aid training as well as teaching those with epilepsy and their families how to identify and respond to different seizures. Annual family retreats, camps for children and youth, presentation of workshops and also the hosting of workshops is also undertaken by the centre.

This impressive list of support, which is provided by the centre, is funded solely by private donations. The Epilepsy Centre urgently needs further funding to enable them to offer additional full-time nurses, allowing the centre to continue to provide support, compassion and understanding to those families who are on the epilepsy journey. To give an understanding of the level of need for this centre's services, five new families approach the Epilepsy Centre every week asking for assistance.

It should also be noted that when epilepsy has been established as the primary diagnosis, it is then regarded as a medical condition rather than a disability. This generally means that NDIS support is therefore not available. If a person has uncontrolled epilepsy but also a chronic syndrome, such as Dravet or West syndrome, where their epilepsy is classed as a secondary condition, it is only then that the person is recognised as having a disability and qualifies for NDIS support.

The distinction between primary and secondary diagnosis creates a significant gap in public health services. The organisation filling this gap is the Epilepsy Centre. The intervention provided by the centre improves the awareness of parents and children on this rollercoaster, helping them to believe that epilepsy is not an insurmountable obstacle to achieving a full life. In South Australia, 34,000 people have a primary diagnosis and many of these are reliant on the support of the Epilepsy Centre.

A report prepared by Flinders University on the rates and costs of seizure-related hospital admissions of both children and adults in South Australia over a two-year period between 2012 and 2014 noted the combined cost of these admissions was $15,436,525. During this period, over 678 children and 1,726 adults presented, resulting in 3,325 admissions to hospital. With appropriate preventative care, including the implementation of care and management plans, the cost of these admissions could be reduced.

How do we achieve this? By investing more funds in the Epilepsy Centre, enabling them to provide more nursing services. The member for Davenport, Mr Sam Duluk, previously made an impassioned speech on 23 June 2016, raising awareness of epilepsy. On that occasion, an occasion when I was in this house to listen to him, Mr Duluk also called on the state government to adequately fund more epilepsy services, research and diagnosis. During that speech, the member for Davenport said, and I quote:

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.

I take this moment to compare the funding with other states. In Tasmania, the Liberal Party has committed to providing $880,000 over two years to Epilepsy Tasmania to support improved services. This will result in the increase of availability of support services for both families and carers and also an increase in education and awareness of epilepsy.

In Victoria, where there are 63,000 people living with epilepsy as a primary condition, the Victorian Labor state government funds the Epilepsy Foundation in the order of $1.2 million. Imagine the 34,000 people of South Australia similarly affected and how completely unsupported they must feel by their state government. It is time for South Australia to keep up with the rest of Australia and deliver the much-needed services for all the Ellas and Katherines out there.

It is challenging, not only for those suffering from epilepsy but also for their families, friends and carers. Having epilepsy is a constant juggling act. It does not stop with the seizures: it is the routine of medications and specialist appointments as well as the social aspect of how it often affects the individual's functioning in society.

Mount Gambier's champion Katherine Height would like to see the stigma attached to epilepsy removed and to make the community aware that no two days are the same for people with epilepsy. We can help Katherine reach that goal by supporting the Epilepsy Centre at Prospect to achieve its mission statement, which is to support and enrich the life journey of people impacted by epilepsy through education and awareness programs that empower people to change lives.

In closing, I call on the state Liberal government to show care for the 61,000 South Australians with epilepsy, show you care and become epilepsy aware. I commend this motion to the house.

Mr DULUK (Waite) (10:56): I move:

Delete paragraph (c) and substitute:

(c) urges the National Disability Insurance Agency to assess applications of eligibility expeditiously to provide much-needed support to individuals whose functional capacity is profoundly impacted by epilepsy.

I rise to commend the member for Mount Gambier's motion in its amended form and wholeheartedly thank the member for Mount Gambier for bringing it to the house. As the member raised in his contribution, it is an issue that is very important to me, to my constituents and to many South Australians, and he understands, as I do, the importance of supporting those in our community, some 61,000 South Australians, who live with this condition.

Epilepsy is a chronic health condition and is recognised as a disability under the National Disability Insurance Scheme Act 2013, both on its own and as part of other disability types. There is a wide spectrum of how people are affected by epilepsy. The severity and impact of epilepsy through a functional capacity assessment determines whether a person with epilepsy is eligible to access the National Disability Scheme.

Epilepsy, uncontrolled whilst on medication, is listed at No. 3 on the list of recognised disabilities under the commonwealth Department of Social Services. In South Australia, neurological impairments of an episodic nature are considered a disability under the Disability Services Act 1993. The severity of one person's condition does not impact on accessibility of service provided by SA Health.

I think it is really important that we have this debate and continue to raise awareness. I know that back in 2016 I moved a motion that was unanimously supported in this house, a motion that also included the need for the state government to provide financial assistance directly to those people in South Australia living with epilepsy. It is also important to note that SA Health, in its work and across jurisdictions, is well on the path of providing assistance to those with epilepsy.

International Epilepsy Day, also known as Purple Day, is an important opportunity to raise awareness of epilepsy by wearing the colour purple. It is a grassroots movement that started in 2008 by then nine-year-old Cassidy Megan of Nova Scotia in Canada to increase awareness and help reduce ignorance and stigma that is often associated with epilepsy.

Purple Day is also an opportunity to acknowledge the work of epilepsy associations, including the Epilepsy Centre of South Australia and Northern Territory, which provides support and services for people with epilepsy, their families and carers. The day has grown each year, with people not only wearing purple but holding events and raising funds for research and support services. Whilst we should not underestimate the importance of Purple Day in helping raise awareness of epilepsy, it has become a critical fundraising event on the Epilepsy Centre's calendar to provide much-needed services back to the community that they represent.

The Epilepsy Centre is a 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 in South Australia and the Northern Territory. Staff work tirelessly with very few resources to help the many thousands of South Australians affected by epilepsy. They do so without any state government funding.

I have been a strong and vocal advocate for those affected by epilepsy and for the Epilepsy Centre. As I stated earlier, in 2016 I moved a motion that called on the now former state government to adequately fund epilepsy services, research and diagnosis. That motion was supported unanimously by the house. I think it is so important that the house, the parliament and the government of South Australia continue to recognise what the people, through the parliament, have put on the record before. I moved that motion in 2016 and I will not waver from the intent of what I stated back then. I thank the member for Mount Gambier for once again raising this issue before the house.

The Epilepsy Centre has expressed to me disappointment with the response they recently received from the government in relation to their request for funding. I would also like to note my disappointment in that regard. The Epilepsy Centre, I believe, has been looking for assistance of about $240,000 a year for the next four years to support the fantastic work that they do. What does $240,000 mean to the Epilepsy Centre? That funding would enable the centre to provide services equivalent to an additional three FTE registered nurses per annum to work with people in the community diagnosed with epilepsy as a primary condition and their families, especially children, young people and those who are newly diagnosed. They currently have only 2.5 FTE staff to resource these activities

The key aim of the Epilepsy Centre is to reduce the need for unnecessary presentations at acute hospitals through better care and planning, awareness and management of the impact of the condition. It is an important goal that aligns with the new Marshall Liberal government's commitments to invest in better prevention and targeted prevention. Preventable health conditions costs us dearly. Investing in prevention avoids future costs to both individuals and government, benefiting individuals, communities and the wider society.

This is the situation that we have at the moment. As I have just put on the record, I am disappointed that the Epilepsy Centre's request for funding has not been met by this new government. But they are the challenges that we confront as a result of Labor's waste and fiscal mismanagement. I look at the programs and schemes, government advertising and re-election charms that the former Labor government invested in, and I always ask myself: had those wasteful government expenditures not been undertaken by the former Labor government, would we today be able to properly afford front-line services for people with medical conditions? And the answer is yes.

I hope that within this four-year term of government there is capacity within the state budget to properly fund not only fantastic hardworking organisations like the Epilepsy Centre to meet their small need but of course all organisations that are in the preventative health space and support those people with disabilities and the like. That is my commitment to my electorate and that is my commitment to the parliament. It is something that, as a member of government from the benches, I will continue to lobby for on behalf the 61,000 South Australians who have this chronic condition. It is hardworking South Australians, such as those living with epilepsy, especially chronic epilepsy, who desperately need help—hardworking South Australians, such as Vikki and Glen in my electorate, whose son Archie suffers from severe epilepsy.

The Marshall government is committed to investing in prevention and working through balanced health service funding, in particular targeting support to those who are at greatest risk. Targeted prevention initiatives, such as investing in registered nurses to work with people in the community diagnosed with epilepsy, can avoid or delay the onset of illness and disability, stop the deterioration of the condition and reduce risk. I want the government to work constructively with the Epilepsy Centre to optimise health services around the thousands of South Australians living with epilepsy so that they can access much needed help and support.

Ms COOK (Hurtle Vale) (11:05): I rise to support the motion of the member for Mount Gambier. I will read the full motion now because there have been changes. I indicate from the start that we will support the amended version as submitted by the member for Mount Gambier, and I will provide reasons for that. The motion now reads:

That this house—

(a) recognises International Epilepsy Day, also known as Purple Day, which was held 26 March 2018;

(b) acknowledges the importance of raising awareness of the condition, as it affects about 61,000 people in South Australia;

(c) calls on the state government to recognise epilepsy as a chronic health condition and calls on the state government to provide funding for educational and awareness programs and to provide funding to the Epilepsy Centre.

I want to thank and congratulate the member for Mount Gambier. I also congratulate the now member for Waite (and previous member for Davenport) on continuing to bring epilepsy to the forefront of conversation here in parliament for a group of people who have significantly suffered across the decades due to epilepsy. There are 61,000 Australians living with epilepsy. It is a diverse condition with a whole range of consequences from severe to minor. Any consequence that creates any form of disability is something we need to take seriously.

I would echo the comments made by the member for Mount Gambier by recognising International Epilepsy Day, which took place this year on 26 March. March was a significant and very busy time for many people in this house, and, sadly, International Epilepsy Day, or Purple Day, did not receive the full-throated endorsement or attention that it rightly deserves from members of this house. Of course, International Epilepsy Day is all about urging people around South Australia, and indeed internationally, to end the stigma and discrimination against those living with epilepsy in our community.

In brief, epilepsy is a common brain disorder that takes the form of recurrent seizures, some of which can be controlled and prevented with ongoing medication and stability. Of course, that is something all people suffering with epilepsy want to achieve. Having seen, across my nursing career, many, many people undergo treatment for epilepsy, I can tell members of this house that it is extremely difficult to gain that stability. Any support that we can give from a medical or psychosocial point of view will be well received.

According to Epilepsy Australia, epilepsy can develop at any age, regardless of gender or ethnicity. Throughout Australia, some 250,000 people currently live with epilepsy. That is actually one in 25. If you look at this house, there would be two people sitting in here with epilepsy. International Epilepsy Day, or Purple Day, was founded in 2008 by a young Canadian named Cassidy Megan. It has since grown into a global movement. There is something to be said about those Canadians and global movements: I understand that White Ribbon started there as well.

I encourage members and those listening to cast their minds forward to International Epilepsy Day in 2019. No doubt we will all be slightly less busy next March, and International Epilepsy Day will prove a great opportunity to do a fundraiser in support of those living with epilepsy or to acknowledge the common contribution of someone living with epilepsy in your electorate or community.

I take this opportunity to mention to the people of Hurtle Vale, and indeed the people of Reynell and Kaurna, the family of Chris and Amy Castle, who are the proprietors of the Morphett Vale Butcher. The Morphett Vale Butcher has been in Morphett Vale since I can remember. It used to be run by a gentleman called Stan and it sat on the western side of South Road, currently in the seat of Reynell. Many people who have walked or driven through Morphett Vale would recall that in the past five or six years that that butcher has moved across South Road and now sits within the shops on the eastern side of South Road.

Previously, Chris and Amy, out of love for their daughter, who has battled and still does battle significant and severe epilepsy, painted their butcher shop purple. Chris and Amy continue to fundraise and raise awareness about epilepsy in our community. I would like to take this opportunity to commend the work they do and thank them for it. Not only do they do that but they generously donate barbecue meat to provide opportunities for other charities to get support. Thank you to the Castle family.

The original paragraph (c) of the member for Mount Gambier's motion links to his new paragraph (c). Both before the last state election and since, people have been coming into my electorate office regarding epilepsy and indicating how difficult it is to secure funding for treatment through the NDIS. Many of the severe cases of epilepsy that need a lot of care and support for whole families have been in the early rollout, in fact the trial of NDIS, because of their age. It has been a testing of the waters in terms of how to access NDIS for these children, and there have been significant challenges for every family. I could list dozens of families I have spoken to who have had a bumpy ride because it is such a complex condition.

In terms of where we are now, my latest advice is that the cost of medical expenses and equipment is not currently funded by the NDIS but that non-medical costs associated with living with epilepsy, whether it is psychological, physical or otherwise, are covered and are, in fact, a disability recognised. It seems that some consequential circumstances are recognised and funded by the NDIS but that some other primary condition issues are not.

What is clear to me is that taking out the original call about the NDIS is worthwhile, but then inserting the call for funding is extremely important because there is enormous confusion within the community about how children and families—and adults, in fact, with epilepsy—are supported and how to gain support and how to gain funding for things they need to lead a dignified and active life, where they can move forward, seek employment and become a really important part of the community. I think that the call for funding is timely and therefore I indicate that we will certainly support funding for places such as the Epilepsy Centre, and indeed education for the community, because it is required.

I could provide dozens of quotes from the previous member for Davenport, now member for Waite, in previous motions regarding his lambasting of our state government and our lack of desire to provide adequate funding for those centres and for people with epilepsy. We are in a new world and you are in government, and you have the chequebook and you have the power to sign those forms now. Now you are in government, so listen to the calls, the pleas of the now member for Waite who stated:

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 feel terrible that that did not happen, but it is timely. It was also stated, 'Once again, South Australia's families are being left behind because of this Labor government's ineptitude.' Well, the Liberal Marshall government has not yet put money in. I cannot find an election commitment so, sadly, the member for Waite was not able—

Mr Pederick: Yes, you burnt up nearly $500 million on EPAS.

Ms COOK: I do not think it is something you have to boom across the chamber, member for Hammond.

The SPEAKER: Yes, please do not.

Ms COOK: Just because you have a big, booming voice does not make you important. Stay there. I think one of—

An honourable member interjecting:

The SPEAKER: Order!

Mr Pederick: No, just putting a fact.

The SPEAKER: Order!

Ms COOK: —the things that is important—

Members interjecting:

The SPEAKER: Order!

Ms COOK: —is that we work together and we now move forward. You have the purse strings, and I support the member for Mount Gambier's motion.

Mr MURRAY (Davenport) (11:15): I also rise to support the member for Mount Gambier's motion. I will cover some of the points raised by the member for Hurtle Vale because the practical reality is that, as she says, we are now in government and we have inherited the chequebook. The practical problem we have with the chequebook is that there are no funds in the account, if I could use that analogy, with which to operate it.

We learnt yesterday, courtesy of the Treasurer, that the Labor Party had planned to chop roughly $700 million out of the budget, of which the South Australian health department was going to suffer $400 million, so there is considerable work for us to do. Albeit that we are in charge of the chequebook, the member for Hurtle Vale's point, there is not a lot of coin left—but thanks anyway.

Ms Cook: Cheers.

Mr MURRAY: Yes, cheers—cheers, indeed. I rise to provide my support for the motion based on some personal knowledge of this disease, and in particular a fairly severe form, but more particularly in recognition of a small family whom I met on the first day I doorknocked in my electorate. I will not name the family, but they had considerable issues. When I doorknocked, I was mistaken for the pizza delivery driver and had to disabuse the kids in question that I was not the driver. I stress that was not based on my appearance, although I recognise that some stereotypes might well apply.

This particular family had considerable issues, not the least which was that they had several children who were chronic sufferers of epilepsy. As I said, it was one of the first homes I doorknocked as a candidate, and I was particularly struck with how tough that family was doing it. What I sought to do, and what I will continue to seek to do as their representative, is the best I possibly can for them and indeed for other sufferers.

As other speakers have pointed out, Epilepsy Day, or Purple Day, is an important means of providing publicity for the condition. It is one that affects literally thousands of South Australians, and we are extremely lucky that they are being supported by the work of the epilepsy associations, including the Epilepsy Centre of South Australia and the Northern Territory, and the CEO, Robyn Wakefield, is a constituent of mine.

Purple Day, as the member for Hurtle Vale has pointed out, was somewhat clouded this year courtesy of the hullabaloo surrounding the election, but I join with her in her suggestion that we gird our loins for 2019 and endeavour to do what we can to raise awareness of the condition and help raise funds, in particular, to support people who suffer from the condition.

Insofar as government support is concerned, we have an ongoing commitment to improving the accessibility and quality of services in South Australia. I am told that SA Health has invested in technology, staffing and other resources in all our local health networks to provide a range of services for both children and adults living with epilepsy. These include outpatient and inpatient neurological and neurophysiology services, including tertiary level medical diagnostic and treatment services and education services for admitted and non-admitted patients.

I share the member for Hurtle Vale's view on her points regarding the NDIS and the square peg in a round hole approach that we are all forced to adopt in our electoral offices, trying to assist people in accessing services or move from the state to the NDIS. I thank her for her contributions insofar as the split of what is funded and supported and what is not supported is concerned.

The NDIS is a fact of life in some respects. Again, I support the member for Mount Gambier's motion and, in particular, the means by which it can elevate the treatment and recognition of this condition out of it simply becoming yet another condition covered, however well or not, as the case may be, under the NDIS. I would like to return to the intent of this motion and, in particular, express not just my support for the motion but my support for the family I referred to earlier.

There is not a lot of capacity that we as an incoming government have. As the member for Waite pointed out, there was not a lot that could have been done previously. I will close by supporting the points made by the member for Waite. I think it is incumbent upon us to do what we can for our constituents. Sometimes we may need to become a little bit obstropolous and insistent in order to make that happen. I support his comments in that regard and, in so doing, support the motion.

Mr BELL (Mount Gambier) (11:22): I will close the debate by thanking all members who have contributed to this motion: the members for Hurtle Vale, Waite and, of course, Davenport. I think there have been some very good points put forward: this disability needs to be elevated and there needs to be money allocated to the Epilepsy Centre. How we achieve that through a bipartisan approach is something that I look forward to working with the government to achieve.

On behalf of all 61,000 people in South Australia who have epilepsy, I wholeheartedly thank all members in this house and ask that we give consideration to a bipartisan approach for funding and moving this forward. When you look at the amount of money being requested, around $240,000 each year, it really is a minuscule amount. In my speech, I quite deliberately touched on the cost to the healthcare budget. When it gets to an acute stage and a hospitalisation stage, you are talking about millions and millions of dollars.

I believe that Liberals are very good at economic rationalisation and working out that it is a finite budget—let's not our kid ourselves about that. An investment of $240,000 to save over $2 million makes very good economic sense to me and is something that I would encourage the government of the day to turn their attention to. With those closing remarks, I commend my original motion to the house.

Ayes 22

Noes 19

Majority 3