Ben Small (Forrest, Liberal Party, Shadow Assistant Minister for Electoral Matters) Share this | Hansard source

I couldn't allow a discussion of endo to go on in this place without mentioning and paying tribute to the legacy of my predecessor in the seat of Forrest, Nola Marino, whose deeply personal and profoundly effective advocacy in this space was built on the experiences of her daughter Kylie, whose story Nola shared because it highlighted the failings of our healthcare system and its inability to respond to endo appropriately.

After seeing two gynaecologists, who simply dismissed Kylie and told her that she was overstating her symptoms, her condition progressed disastrously. Finally, a third gynaecologist diagnosed what he called the worst case of endometriosis he'd ever seen, so aggressive that it was attached to her bowel and was strangling it. The disease almost killed Kylie, who, in the course of very, very serious treatment, developed peritonitis, septicaemia, a lower bowel infection, a burst appendix and had an episode where her heart went into fibrillation while she was in surgery. She spent 11 days in ICU, had some 1,500 internal staples, 15 tubes inserted and three external colostomy bags. That is how serious endo can be for women in Australia. It of itself is a story that highlights how unacceptable it is that for a condition affecting some one in seven women in Australia, the average wait time for a diagnosis can be seven years. So Nola's advocacy was built on concrete achievements in this place.

I want to take just a few moments to step through those achievements because, alongside the then health minister, Greg Hunt; the then member for Boothby, Nicole Flint; and the then member for Canberra, Nola set up Parliamentary Friends of Endometriosis Awareness, which ultimately led to the National Action Plan for Endometriosis being launched in 2018. It was the first ever national action plan focused on improving awareness of the disease and understanding of its impacts, speeding up diagnosis for Australian women and investing in medical research to develop better treatment options and ultimately pursue a cure. This is a foundational policy document. The entire program has followed on through successive governments.

Additionally, in 2020, Nola managed to get the PPEP Talk into WA, so that school-aged women and girls were receiving the information that would ultimately build the awareness of this insidious disease. Clinical guidelines have gone on to be updated and promulgated across the medical industry, and Nola has led direct constituent outreach across the south-west of WA to build the case for a pelvic pain clinic in the south-west of WA, which is sorely needed. Nola is still an Endometriosis Australia ambassador and remains committed to that work to this day.

I find it a little bit hard to reconcile the government's closer-to-home rhetoric when announcing these new clinics with the fact that for women outside of Perth, the south-west is home to the largest population of people—some 200,000 people—and the only regional clinic in WA is in Albany, which, for women in the south-west affected by endometriosis, is up to a 3½-hour drive from the Perth clinic or a four-hour drive from Albany. It affects one in seven women, who, as I said, have to wait up to seven years for a diagnosis, although hopefully don't experience what Kylie Marino did. I do have to ask why it was that the government chose to pass over the south-west of WA for an endo clinic. It is a priority for the region. It is something I will continue to advocate for, building on Nola Marino's proud legacy in this space. I think it would be fitting that, when one day a government listens to these pleas to build an endo clinic in the south-west of WA, we get Nola Marino there to cut the ribbon and to celebrate what would be a defining achievement for someone so personally committed to advocating in this space.

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