COMMITTEES

Senator ALLMAN-PAYNE (Queensland) (16:00): I present the report of the Community Affairs References Committee on epilepsy, together with accompanying documents and move: That the Senate take note of the report. Epilepsy is more than just seizures. That was what we heard as a committee at our first hearing into epilepsy, here in Canberra.

Over the course of this inquiry, through the generosity and bravery of those people who are living with epilepsy, their families and those people who have lost loved ones to epilepsy, the committee heard loudly and clearly that epilepsy is indeed much more than seizures. I had no idea that 30 per cent of people in this country who get an epilepsy diagnosis have what's called drug-resistant epilepsy.

For those people, their lives and the lives of their families are turned upside down. We heard testimony from parents of young children and young adults and, in some cases, adult children with drug-resistant epilepsy who feel like they are on high alert 24/7, day after day, week after week, year after year, looking out for and caring for their loved ones, hearing bumps in the night and wondering if their child has had a seizure, worrying whether their young child is going to be injured from a seizure.

We heard moving stories from families who have lost loved ones to epilepsy. SUDEP—the first time I heard that term was during this inquiry—stands for sudden unexpected death from epilepsy, and people with drug-resistant epilepsy have a 17 per cent risk of dying suddenly from epilepsy. Tragically, many, many parents and people living with epilepsy are not told that when they get their diagnosis.

For some, the first time they hear about SUDEP is when they are burying their child or their loved one. Those families told us loudly and clearly that they want SUDEP to be part of the discussions when an epilepsy diagnosis is made. They want families and people living with epilepsy to understand clearly what SUDEP is, what the risks are and how it can be minimised.

For those people who have epilepsy that can't be controlled, their lives are turned upside down. When you get an epilepsy diagnosis, you lose your driver's licence, but not only can you not drive yourself around, we heard evidence from people living with epilepsy that taking public transport is out of the question for many people. The danger of having a seizure on public transport is too big a risk.

We heard from people who'd been thrown out of taxis or Ubers because they were having a seizure, and the person driving the car didn't understand what was going on. They thought they were drunk or on drugs. People with drug-resistant epilepsy, in many instances, can't work.

They can't drive. Yet, for many, because their conditions are episodic or fluctuate—they go up and down over time—they're not eligible for the National Disability Insurance Scheme. It's families, partners and loved ones who are the ones doing the majority of the caring for those people.

We heard in our inquiry that there are no optimal care pathways for epilepsy and that epilepsy care and diagnosis around the country is fragmented. For most people, it's a postcode lottery. We heard from a young family in Tasmania whose daughter was having 30 seizures a day and yet being sent home because the seizures weren't long enough to meet the threshold for more tests to be done.

We heard stories of young First Nations people in the Territory either being removed from or having to leave their families on country because there's no support there once they get an epilepsy diagnosis. Yet First Nations people are overrepresented when it comes to diagnoses of epilepsy. We also heard things in our inquiry that give us hope and are a good story.

We went to see the Murdoch Children's Research Institute in Melbourne and speak to Professor Howell and the others who work there, who are leading the world in gene therapy for epilepsy and who are also leading the world in rapid gene testing for epilepsy. We heard the story of a young family with a young daughter who was diagnosed within months of being born, and that has fundamentally changed the trajectory of their daughter's life, because an early diagnosis for a baby or a young child with epilepsy—if it can be controlled—changes their life trajectory.

Continual seizures on a young brain affect that young person's development, and many young people with severe uncontrolled epilepsy end up with many comorbidities or other medical conditions that affect their life trajectory. So making rapid gene testing available to people very early on in their diagnosis is incredibly important. We heard, too, that, despite Australian researchers making massive strides in epilepsy research, some funding is not guaranteed and some funding is being reduced.

Australia is a world leader when it comes to epilepsy research, and one of the recommendations of the committee is that we continue to invest in that research so that we can continue to lead the world and provide the breakthroughs that we need for people who are living with this condition. I want to offer my thanks to Senator Wendy Askew, who was the instigator of this inquiry.

Senator Askew played a key role right up until she left the Senate, going around the country with us, hearing the evidence and contributing to what will be our final report. I also want to give thanks to Senator Ananda-Rajah, who also has a deep interest in this inquiry and who, with her medical background, was able to add to the quality of the questions that we were able to put to the medical experts who came before the inquiry in particular.

I want to thank the secretariat because the work that they have done in assisting us to bring this report into the chamber has given voice to so many people who came and gave evidence at our inquiry. We had hundreds of submissions. We had numerous lived experience panels right across the country, and every single one of those people has been given voice in this report.

I want to encourage the government to take on the 27 recommendations in this report. It starts with the need for an education campaign in this country. Certainly, one of the things that I learnt as I chaired this inquiry and listened to the evidence of witness after witness is that we as a community have very little knowledge about epilepsy.

Yet it's one of the most common brain conditions experienced by people in this country. We need teachers, we need nurses, we need GPS, we need taxi drivers, we need Uber drivers, we need other people who are in the community to understand what epilepsy is, to not be afraid of it when they see someone experiencing a seizure and to understand that there are multiple ways that people can have seizures—they don't all look the same.

We need to find ways to support those people who are living with an epilepsy diagnosis, particularly those with drug-resistant epilepsy, who desperately need more care and support. I want to say a personal thank you to every person living with epilepsy, to every family member of someone living with epilepsy and to every family member of a loved one who died from epilepsy.

Thank you for your courage and your bravery, and I hope that this report does your evidence justice.