Motions: International Epilepsy Day

Wednesday August 01, 2018

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.