Grievance Debate: Epilepsy Centre

Wednesday November 07, 2018

Mr BELL (Mount Gambier) (15:22): On 1 August this year, I put forward a motion to this house calling on the state government to not only recognise International Epilepsy Day but also provide some level of funding for the state's Epilepsy Centre. I spoke of two Mount Gambier residents: eight-year-old Ella and her mum, Katherine Height. Ella was diagnosed with a rare genetic condition leaving her to experience multiple seizures per day as well as being placed on a strict ketogenic diet.

Experiencing this firsthand, Ella and Katherine decided to raise awareness through their own foundation: Ella's Purple Promise. Through advocacy, Katherine and Ella have held fundraisers that go on to fund talks held by the Epilepsy Centre in Mount Gambier, raising awareness throughout our community. I am pleased to announce that Katherine's efforts have finally been officially recognised.

On Friday night, 2 November, I had the honour of coming to Adelaide to watch as our very own Katherine was awarded the Carers SA award at the Community Achievement Awards, which is a tremendous achievement. In her acceptance speech, Katherine spoke honestly about her determination to get the condition the awareness and recognition it deserves. Katherine also spoke about the state government's lack of assistance to the many South Australians living with epilepsy.

As I said in my original motion, South Australia and the Northern Territory are the only two states or territories where the Epilepsy Centre does not receive state government financial support. Currently, the Epilepsy Centre in South Australia provides support and services to thousands of people diagnosed with epilepsy, plus their families and carers. There are over 60,000 in South Australia alone. It is truly outstanding that with so little funding the centre and their staff are able to provide such quality care to people with epilepsy as well as those close to them. I will now quote a small part from my original speech from the motion.

…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 [South Australian] 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 [solely] on the support of the Epilepsy Centre…

In Tasmania, the Liberal Party has committed to providing $880,000 over two years to Epilepsy Tasmania…

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.

The government's aim is always to support South Australians. Without government support, the Epilepsy Centre will simply not be able to keep up with the demand for their services. In order for our state to grow, we also need to grow our services.

In closing, I would like to once again congratulate Mount Gambier's Katherine Height on her advocacy and her drive in this important area. It is a topic that hits very close to home for Ms Height. She sets a wonderful example for her young daughter Ella, and her work is truly touching so many South Australians' lives. It is an outstanding effort. I would also like to commend the member for Waite and the member for Davenport for their support of my motion, which passed this house with support on 1 August.