Thursday, 1 August 2019
Select Committee on Stillbirth Research and Education; Government Response to Report
I would like to begin by thanking the government for responding to the report of the Senate Select Committee on Stillbirth Education and Research. This was a significant report. For the first time in Australian history we have a national set of recommendations to address the tragedy of stillbirth in this country. Stillbirth is a tragedy that affects six Australian families a day; 2,200 babies a year are lost to stillbirth. In the last 20 years, the rate of stillbirth has not changed in this country. I use the 20-year figure because that's as long as we have been keeping accurate—or at least somewhat accurate—data. In those 20 years, some 44,000 babies, who were wanted and loved by their parents, were lost to us. Quite tragically, they were lost to us in large part—a large number of them—because we as a country, collectively, had not spoken about the issue of stillbirth, had not sought to understand what causes stillbirth and were not providing parents and clinicians with the advice that would help prevent stillbirth. The rate of stillbirth in this country is higher than the road toll. It is the No. 1 killer of babies under the age of one.
This inquiry allowed parents who have experienced stillbirth to speak. And speaking is important, because this is an issue where remaining silent has been of great detriment to the Australian community and to Australian families. Remaining silent has meant we don't talk about it. It's meant we don't address it. It's meant that stillbirth has been a tragedy people have suffered in silence. We viewed it as a private tragedy, not a public health problem. And it is a public health problem. It costs us an extraordinary amount of money. Analysis done by PricewaterhouseCoopers showed that stillbirth cost the economy $680 million over five years, and that's before we really get to the impact of what it cost the health system.
This inquiry had submissions from hundreds of parents, as well as researchers and clinicians. It was an inquiry, perhaps unlike many others done in this place, where there were no bad guys; there were only victims, and the only thing that they were victimised by was the silence of the last 20 years. This inquiry gave them the chance to speak. They spoke loudly and passionately and they were heard by this Senate.
The report made some significant recommendations. I want to speak briefly to three broad areas. One is research and information. We are really bad in Australia at collecting data when a stillbirth occurs. We have a shockingly low rate of autopsies when a stillbirth occurs. We do very little to put information about a stillbirth back into the clinical practice in order that we might prevent it in future. We collect data inconsistently across jurisdictions. We even have two national datasets that give us wildly varying figures on the actual number of stillbirths. If you were to look at the ABS data, it would only report about half of the stillbirths that actually happen. So we aren't very good at this. Other jurisdictions are much better, and we can learn from them. The report sought to do this.
I particularly note that this report made a recommendation that we should consider placing autopsies for stillbirth as a Medicare item. The government have accepted that and are seeking advice on doing just that. That would make a massive difference. The reality is that stillbirth autopsies are not funded in this country. It's one of the reasons we don't do them, and it's one of the reasons parents don't get information and clinicians don't get information to prevent stillbirth.
One of the other areas the report covered was around bereavement. I have to say to the Senate that I was a little bit taken aback by the extent that the report went into bereavement, because we started out really looking at education and research. What we uncovered is that bereavement care plays such an important role in preventing future stillbirths, in helping parents to return to work, in helping our medical profession deal with their own bereavement and particularly in helping the medical profession understand what causes stillbirth and how we can prevent it. On bereavement support, the report made recommendations regarding employment and paid parental leave. That was regarding supporting families at the point at which a stillbirth occurs and particularly in providing bereavement support for culturally and linguistic diverse communities and Aboriginal communities, where the tragedy of a stillbirth is sometimes experienced in a different way to the broader community and where we need special care.
The inquiry and the process of writing it was a remarkable one. I want to pay tribute to the chair of this committee, Senator Malarndirri McCarthy, and to the other senators who participated: Senator Bilyk and Senator Rice and former Senators Gichuhi and Molan. Senator McCarthy was a very wise chair, and we benefitted greatly from her leadership. Senator Bilyk brought passion and the experience of being the mother of a stillborn son, Timothy. I want to particularly note former Senator Jim Molan, who is not here. I know he wishes he could be here to see and appreciate the government's acceptance of all of the recommendations of this report. Former Senator Molan was a very valuable member of this committee. He was the deputy chair. He contributed well. His granddaughter, Emily Charlotte, was lost to stillbirth too. He brought that passion as a grandparent, which we heard about during the committee too. Perhaps I'm not helping the former senator's career when I say this, but I wish he was in this chamber and perhaps they might think about bringing him back.
I particularly would like to thank Minister Greg Hunt for the way in which he interacted with the committee and has led a government response that his seen the government accept all of the recommendations. It goes to show that sometimes, in a place that is marked by division and adversarialism, that we can come together to do things well. I also want to thank Labor's former health spokesperson, Catherine King, and our new health spokesperson, Chris Bowen, who have constantly and always supported me and the Labor members of the committee to persist in this work. I also want to thank the Senate for its unanimous support in getting this Senate select committee up. In doing that, I acknowledge that when that when I first arrived here I didn't have much awareness of how one gets a Senate select committee up. I would like to thank Senator Farrell and Senator Wong for their assistance in that. It was very gratifying to have the opportunity to draw the Senate's attention to the issue of stillbirth.
As I said, there were several hundred submissions. In closing my remarks, I want to pay tribute to the parents who showed courage, coming forth to talk—often in great grief, but with a spirit of generosity—to share their experiences as the parents of stillborn children with the Senate and with the country. My experience in this inquiry was a difficult one. My daughter Caroline was stillborn 20 years ago. I was just filled with admiration at the courage with which some of these parents could come forward—sometimes just months after their children had been lost—to be able to speak, coherently, compassionately and with conviction about what we, as a country, needed to do to ensure that other families didn't live through this tragedy.
This report acknowledges that, if we adopt the recommendations, there is great confidence that we could reduce the rate of stillbirth by 20 per cent in just three years. That would be remarkable. That would be hundreds of babies' lives saved. The researchers that we spoke to were quite confident that we could easily exceed that, but we need to take the first step. The first step was taken by the Senate, and I thank the Senate. The next step has been taken by the government, by accepting all the recommendations of the report, and I thank the government for that. I look forward to working with the Senate, the government, the parents and the stillbirth community to ensure that we achieve the goals and the targets that we have set in this landmark report.
I also wish to take note of the committee report. Stillbirth in Australia is still the biggest cause of death amongst infants. The rate of death from stillbirth is higher than the national road toll. As we heard from Senator Keneally—we recite this fairly frequently now—Australia loses 2,200 babies a year to stillbirth. That's six babies a day. Just by way of comparison, without being at all denigrating about SIDS, that is 30 times more common than SIDS. We all know that, with SIDS having a community approach and some funding being put into SIDS, we managed to reduce the rate of SIDS dramatically over the past few years. I just want to point out to people that it is 30 times more common. You can tell that the rate of stillbirth in Australia is still way too high.
As Senator Keneally also said, we've seen very little action. In fact, statistics have been kept for only the past 20 years. Thirty-six years ago, when my husband and I had our son and he was stillborn, he didn't even rate as a statistic, let alone anything else, and there was no counselling or support available for us. Nobody really came to us or spoke to us very much. We were lucky that we did have very good friends. We were living here in Canberra at the time, away from all our family. So, for me, this was a very personal inquiry as well.
One of the things that I took from this inquiry was the importance, as Senator Keneally also mentioned, of being able to speak about your child. Every day, Senator Keneally's Caroline is still her Caroline. Every day, my Timothy is still my Timothy. No matter how many years go by, they are still our kids. I just want to thank Senator Keneally because she brought this inquiry to the Senate. Without her doing that, this wouldn't have happened. Senator Keneally, you have changed the lives of so many parents by bringing it to the Senate. Being able to talk about it makes life a little bit easier. Parents don't ever forget their stillborn child—ever.
One of the things about this committee was that we started to remove the taboo around death, stillbirth and dying, and 'What's worse than having your baby die?' It really is something that people are very uncomfortable in speaking about, but this committee enabled people to start talking about it, and I think that's wonderful. I've always spoken about our son and I've left lots of people not knowing how to handle me, but I was never going to ever deny his existence. Family members who had stillborn children long before me—in fact, decades before me—did things after the inquiry like organising a memorial plaque for their child, which they didn't do previously, because it has come into the open so much more.
As Senator Keneally also mentioned, there were about 300 submissions to this inquiry. That shows the level of interest. When people gave evidence, especially the parents, it was extremely moving. It was a tough inquiry to do, but it was so worthwhile to be able to do it. I want to take this opportunity today to thank those parents who were so courageous to tell their stories. It stays in my mind that there was a mum and dad who had lost their baby 12 weeks before. I have to tell you that, 12 weeks after losing my son, I don't think I could have fronted a Senate inquiry. But they did. The courage and frankness the parents in particular showed to the committee was amazing.
I also want to take this opportunity to thank all the committee members. As Senator Keneally mentioned, it's nice when you can work in such a cooperative fashion with people right across the chamber. You would hope that there wouldn't be any sort of dissent on this issue, but you can never be sure. Everybody on the committee was respectful to not only the people giving evidence—and, as Senator Keneally said, that was researchers, parents and others—but also each other. I think that speaks heaps for how really well this chamber works when it works well.
We have seen successes achieved in other countries. Australia really lags behind countries like the United Kingdom, New Zealand, Norway and the Netherlands. It's really time that we took concrete action to start reducing the number of stillbirths in Australia. This committee inquiry was the first national investigation and report on the impact of stillbirth on Australian families and the Australian economy. Senator Keneally mentioned that. One of the things people on the outside, so to speak, don't understand is the effect that it can have on the economy.
The fact we've been able to have autopsies allocated a Medicare number is really important because the last thing you want when you're grieving is to have to find the money to have an autopsy. We didn't have an autopsy on our child. We just could not afford it, so it didn't happen. Things like that will give us so much more information for research into what causes it. A variety of issues can cause stillbirth of course—anything from a genetic issue to how the blood is pumped to the baby and all sorts of things. Being able to find out what might cause it is beneficial to not only the country and prospective parents but also the parents whose child has died.
As Senator Keneally said, the report made 16 recommendations. I see it as the first step. Labor welcomes news that the government has agreed or agreed in principle to all of the recommendations of the Senate select committee. We also welcome the announcement by the government of additional funding for perinatal services. This will aid research and prevention programs to drive down Australia's stillbirth rate. We remain committed to working with the government to prevent these tragic deaths in the future and we offer our support in developing a national stillbirth action plan. I recognise that the government is taking steps to make progress on this issue. I'm hopeful and confident that the government will accept our support.
In the last minute or so that I have left I would once again like to pass on my sincerest heartfelt thanks to all those people who gave evidence to the inquiry, to the committee members and to the secretariat. Sometimes I think the staff in the secretariat just go way above and beyond—from discreetly supplying tissues to being so professional about the whole inquiry. I would really like to thank the secretariat that worked on this inquiry. They didn't choose to work on this inquiry. I actually did choose to come on this inquiry; they didn't. They were so professional, and so caring of the witnesses in particular, that you've just got to stop and think about the great job they've done. I know that Senator Keneally, Senator McCarthy, who was the Chair, Senator Molan, Senator Rice and former Senator Gichuhi also really appreciated the support of the committee secretariat. On that note, I will seek leave to continue my remarks.
Leave granted; debate adjourned.