Endometriosis continued

Wednesday 29th November 2017

Endometriosis

Adjourned debate on motion of Hon. T.A. Franks:

That this Council—

1. Notes endometriosis is an illness where tissue similar to the lining of the uterus occurs outside this layer and causes pain and/or infertility and that there is currently no known cure;

2. Acknowledges endometriosis as a serious health concern, often resulting in fertility issues, multiple surgeries, education and employment absences, and a diminished quality of life for the girls and women affected;

3. Recognises the strain on the economy and health sector due to lack of research and expertise in the area of endometriosis and related conditions;

4. Supports the need for early intervention to protect teenagers and young women from infertility and chronic pain in later life;

5. Supports the need for better training and awareness in endometriosis for health professionals in the interests of early diagnosis and prevention of further health issues;

6. Recognises that women are at risk of suffering severe physical and mental health issues if endometriosis continues to be under-researched and under-funded;

7. Affirms that women's health issues like endometriosis should be more of a priority for funding and research; and

8. Calls on the South Australian Government to provide funding to extend the trial of the ME program in South Australian schools; an early intervention and education program developed by Endometriosis New Zealand teaching young women that not all pain is normal pain, and facilitating early diagnosis of endometriosis.

(Continued from 1 November 2017.)

The Hon. S.G. WADE (21:46): Endometriosis is a condition in which tissue that normally lines the uterus grows outside the uterus. It can grow around the pelvis, ovaries, fallopian tubes, bladder or bowels. During ovulation this misplaced tissue causes bleeding and also causes inflammation and pain.

As well as menstrual irregularities, endometriosis can lead to painful periods and reduced fertility. Endometriosis is remarkably common. One in 10 women are affected by it at some point in their lives. However, many women are unaware that they have the condition. On average the condition takes between seven and 10 years to diagnose. Often women have endured the pain of endometriosis for years without any form of relief. In some cases they endure in silence. In others, they have confided with doctors, who dismiss them because of an inadequate understanding of the condition.

While there is no cure, endometriosis can be treated. The main treatments include hormones and surgery, and sometimes women can benefit from receiving both. The Liberal team endorses the motion of the honourable member and thanks her for bringing it to the attention of the house. Despite the condition's prevalence, it has a remarkably low profile, perhaps reflected in the fact that it receives a very low level of funding.

For example, while the National Health and Medical Research Council allocated merely $837,000 to endometriosis-related research, the cost of treating endometriosis is high, an estimated $6 billion per year in Australia. Applying evidence-based treatments could reduce this cost dramatically. According to the Pelvic Pain Foundation chairperson and endometriosis expert, Dr Susan Evans:

About 20 per cent of Australian teenage girls are missing school one to seven days every month because of their periods, without getting appropriate assessment and treatment. It is important to teach girls what is normal and what is not and encourage them to seek help from their GP early if they are missing school or finding periods distressing. Worldwide, an eight-year diagnostic delay from when a girl first presents with painful symptoms to a diagnosis of endometriosis is common.

Early intervention is critical, and this intervention can start in our schools and spare young girls and women from decades of pain and disruption.

An awareness program was trialled in 10 South Australian schools in August 2017, funded by the Pelvic Pain Foundation. The Menstrual Health and Endometriosis Program was brought to Adelaide from New Zealand, where it has run for the past 20 years. The program involves one-hour presentations to year 9 and 10 students; education sessions for school nurses, counsellors and principals; and the distribution of resources to students.

Endometriosis is receiving more attention in Australia. In June, the federal Labor MP, Gai Brodtmann, and the federal Liberal South Australian MP, Nicolle Flint, formed a bipartisan parliamentary endometriosis awareness group and work alongside organisations such as Endometriosis Australia, Pelvic Pain Foundation of Australia, the Worldwide EndoMarch Team Australia, Endometriosis Association Queensland and EndoActive Australia and New Zealand. The Liberal team welcomes the opportunity to support efforts to continue the good work carried out by South Australians and others locally and nationally to extend our support to women who suffer from endometriosis.

I noted earlier today that the government had filed an amendment to this motion. I appreciate the intention behind it; that is, that one would not want, in pursuing evidence-based practice, to presume on the results of the review. I suggest to the council that another way of modifying the motion to reflect that principle would be to leave out the word 'extend' and insert the words 'beyond the outcomes of'. In that context, I believe that my alternative amendment would provide the council with an opportunity support the spirit of the motion in terms of calling for ongoing funding and support for endometriosis-related programs and, on the other hand, stand ready to learn from the outcomes of the trial. I move to amend the motion as follows:

Leave out the word 'extend' and insert the words 'beyond the outcomes of'.

The Hon. J.E. HANSON (21:51): I also have an amendment that the government seeks to move. I will read that at the start, before I kick off. I move to amend the motion as follows:

Leave out paragraph 8 and insert a new paragraph as follows:

8. Calls on the South Australian government to review the evaluation results of the pilot Menstrual Health and Endometriosis (ME) program in South Australia when they are available.

Not to rehash too much of what has already been said by the Hon. Mr Wade, but I will proceed, generally, with the speech I have and attempt to cut it down a little as I go. I am advised endometriosis affects around one in 10 women and is recognised as a clinical condition with potentially serious outcomes for women if not identified and managed early. I am also told 26 per cent of girls aged 16 to 18 years are absent from school because of distressing symptoms relating to their period. Some of these women will go on to have fertility problems, and many will suffer from chronic pelvic pain. It can take more than eight years to diagnose women who first present with symptoms.

I am advised that currently there is no known cure but that there are effective treatments once a diagnosis is made. Early intervention is important to avoid fertility problems and is supported by the highest level of research evidence. These early interventions can be medical, with drugs or via surgery performed within a number of South Australian public hospitals, including the FMC, Noarlunga Health Service, Women's and Children's, Queen Elizabeth, Royal Adelaide, Lyell McEwin and Modbury hospitals. I am told that SA Health has clinical experts managing pelvic pain in young South Australian women by way of regular paediatric and adolescent gynaecology clinics operating at the Women's and Children's Hospital. There are other specialists in the private sector who also manage pelvic pain.

I am advised that research is currently being conducted at the Robinson Research Institute, focused on the immune and inflammatory pathways that contribute to the development of endometriosis, and that this research is relevant to the prevention of the illness. The exact cause of endometriosis, as I stated, is still unknown and further research would be of value. This could be explored within the South Australian Health and Medical Research Institute as a potential priority for future research and would ultimately require the support of the National Health and Medical Research Council, the primary funding body of Australian research.

I am advised a range of training opportunities are available for health professionals in women's health to assist in the diagnosis and management of endometriosis. The Royal Australian and New Zealand College of Obstetricians and Gynaecologists has a Certificate in Women's Health, designed for medical practitioners who wish to increase their knowledge and practice, including the diagnosis and medical management of endometriosis.

Junior doctors undertaking rotations in three maternity units in Adelaide are encouraged to undertake the Certificate in Women's Health as part of their women's health postgraduate training. Further training in the form of a diploma is available for doctors planning a career in general practice with an interest in women's health. Also, vocational trainees in obstetrics and gynaecology are trained in the diagnosis and treatment of endometriosis over the six years of their training.

Increasing awareness amongst young women about endometriosis and what is not normal pain is supported as an effective strategy to prevent the long-term impacts on the physical and mental health of women. Schools and primary health care are well placed to provide girls and adolescents with this education.

I am told the Menstrual Health and Endometriosis Program was piloted in ten South Australian secondary schools in 2017 with funding provided by the Pelvic Pain Foundation. Nine of these were private schools and one was public. The pilot program is a world's best practice, well-health secondary school education program developed and rolled out nationally in New Zealand in 1995 and has been successful in raising awareness of endometriosis, shifting to its earlier diagnosis, and developing self-help strategies for managing pelvic pain. I am advised the program has been well received by both teachers and students.

I understand the pilot program in South Australia has been formally evaluated, and the results will be published in the next few months. The Pelvic Pain Foundation plans to enrol ten schools in 2018 and to take this opportunity to train Australian educators so that the program is self-sustaining into the future. Given the evaluation results of the pilot are expected in the new few months, it would be timely to consider the next steps with this knowledge of its impact, and the South Australian government is supportive of this course of action, which is the amendment I have put forward.

The Hon. K.L. VINCENT (21:57): I wish only to put on the record a few brief words in strong support of this motion. I thank the Hon. Ms Tammy Franks for providing a briefing to my staff on this issue where a number of people shared their experiences about the long, painful process they went through to seek and eventually secure a diagnosis of endometriosis.

It is very unfortunate that endometriosis is known to be such a common condition yet so often goes undiagnosed. While I of course do not intend to read my entire medical history into Hansard, I can safely say that while it was not endometriosis, I myself have been affected in the past and to some degree presently by a pelvic pain issue. I do not talk about that lightly or easily. It has been a very painful experience and a very long, drawn-out experience.

The reason I wanted to mention it was that when I first started to seek support for this particular diagnosis, in my early 20s, one of the very first things that my therapist said to me was that she was shocked, really, to see someone as young as I was then presenting openly with this condition. She went on to explain to me that it was not uncommon to see women in their 40s or even mid-50s who, only after traumatic childbirths or other issues, began to recognise that what they were going through was not normal and therefore seek support.

Again, this is not easy for me to share, but I feel that I am required to, given that we are talking about encouraging more people to be open about their experiences and to seek the necessary support. To that extent I believe that South Australia would benefit enormously by ensuring that the ME program is provided in schools. This early intervention is crucial to teach young people that not all pain is normal pain and to ensure that help is sought early to prevent years of pain, both physical and mental, and years of potential lost opportunity.

I understand that a pilot program has already been completed in South Australia, and the Hon. Mr Hanson touched on that somewhat, and an evaluation will be available in early 2018. I hope that the government will seriously consider this evaluation. Considering the positive results that have obviously come out of the ME program in New Zealand, it seems that these programs are working, and an extended trial should be funded here in South Australia.

I understand, as most of us in this chamber tonight do, that more work of course needs to be done to raise awareness about endometriosis and pelvic pain in general, particularly around training for GPs. However, I also believe it is crucial to ensure that more young people are empowered by teaching them about their own bodies. I hope that with this education and increased awareness, we may finally see an end to endo.

The Hon. D.G.E. HOOD (22:00): I rise very briefly on behalf of the Australian Conservatives to strongly support this motion. I must confess that I had very little knowledge of this particular condition until I was an attendee at a forum on this topic hosted by the Hon. Ms Franks a couple of weeks ago, in the last sitting week. I was absolutely staggered to learn that one in 10 women suffer this potentially very serious condition. It really had me thinking. How many conditions are there where one in 10 people suffer a particular condition that can be seriously debilitating—not just a mild, almost non-symptomatic, or mildly symptomatic condition, but something that really substantially impacts on their life?

At the forum we heard testimonies, for want of a better word, or personal accounts from young women, women who should be in the prime of their life. One in particular was quite a notable South Australian, someone who everyone in this room I suspect would know and everyone listening to the video feed would know. She gave an account of how her daily life was absolutely debilitating because of this condition. I was really quite shocked by that.

We have done a little bit of research, although I must confess not a lot, into this condition and other conditions that affect roughly 10 per cent of the population in such a debilitating way. I may stand corrected but, as far as I am aware, there does not seem to be anything else that affects so many people that can be so debilitating. It is something that warrants substantial resource funding. One in 10 women suffer a condition that can potentially ruin their life, to put it in colloquial terms. To put it frankly, how can we put up with that? How can we tolerate that? In particular, Roman numeral VI in this motion hits home with me. It states:

Recognises that women are at risk of suffering severe physical and mental health issues if endometriosis continues to be under-researched and under-funded;

We were told at this particular forum that an amount as small as $250,000 would initiate an education program in schools, which would alert young women—that is, women in late high-school years—to the possibility that this condition could be impacting upon them. They may have pain, they may have some sort of condition they do not understand, and this program that could be run in schools would at least give them the opportunity to identify what it might be. Again, that had me thinking.

I know a young woman, and she is probably not that young anymore to be frank, but when she initially started suffering this condition she was quite young, in her late teens. I have known her for a long time—she is a good friend of mine, a good friend of our family—and I wondered if she might have this condition. I reached out to her recently and gave her a call. I said, 'I have just been to this forum.' It was a few days after and I explained what I had learnt at the forum. She said, 'That sounds like me.' She has since been to a doctor. We have not yet had a diagnosis because it was only a couple of weeks ago, but my suspicion is that she is going to come back and say, 'That is exactly what I have, and finally we have a name for this and we know what we can do about it.'

This particular woman, who is now in her late 30s, has been to I do not know how many doctors, but multiple doctors—let's say a dozen doctors or thereabouts—over an extended period of time, seeking medical treatment. All of them have given her a different diagnosis. I am not critical of the medical profession, but she has not had the help she has needed. She has spent time in hospital. It is a massively debilitating condition for her. I hope to hear good news from her in the next few days that finally she has been able to identify the condition and is able to get some treatment. There is also another relatively young woman in my life that may well be suffering from this as well. It is not only a need; it is an urgent need. It is an important need. If the government were to channel fairly trivial amounts of money into this, it would make a very substantial difference to a lot of people's lives. Why are we not doing it?

The Australian Conservatives strongly support the motion and we are really hopeful that the government will now—or if not now, certainly immediately after the election, or whether it be a new government—invest in this. I commit now that our party will be determined to see an impact on this issue because it affects so many women and they deserve help.

The Hon. T.A. FRANKS (22:05): I would really like to thank those who have made a contribution this evening: the Hon. Stephen Wade, the shadow minister for health; the Hon. Justin Hanson on behalf of the government; and the Hon. Dennis Hood from the Australian Conservatives. It would be fair to say that the Australian Conservatives and the Greens do not necessarily always see eye to eye but I am heartened by the fact that we have both taken this issue with the seriousness it deserves.

I also thank the Hon. Kelly Vincent, from Dignity, in particular for sharing her personal experience in this place, which is not the easiest thing to do. One in 10 women suffer from this condition. If you know 10 women, you more than likely know a woman who suffers from this condition and from pelvic pain, and to talk about these issues is difficult for those women. To get help, to get a diagnosis takes eight years, on average.

The amounts that we are talking about here with regard to the schools' program is, as the Hon. Dennis Hood mentioned, $250,000 a year, plus $25,000 in admin costs and $55,000 for that first year of administration set up. So, it adds up to a little over a quarter of a million dollars for something that affects one in 10 women in our society, for something that takes, on average, eight years to diagnose, for something that is a burden on our health system. In the November 2007 report, 'The high price of pain', it was estimated that applying evidence-based treatments could halve the cost of chronic pain to the Australian economy and save $17 billion per annum. With an estimated 500,000 women and girls in Australia with endometriosis, the cost for adult women alone is some $6.6 billion, so that would be a $3.3 billion saving.

We are talking about possible savings of billions for small investments at an early stage so that girls in particular and young women can know that all pain is not normal pain, and get that diagnosis at an earlier time in their lives. That not only saves the health budget but it of course saves those women pain and other various outcomes and trauma and situations where they get to a point where they are unable to have children, where they are unable to participate in the workplace, where they are unable to participate in schooling. We do not need to wait for the review to know that in Canberra, ACT, for example, it was found that 26 per cent of Australian teenage girls were missing school because of their period and, of those, 2 per cent reported time off school with every single period.

Girls are missing school, women are missing work and people's lives are being needlessly damaged. For a very modest investment, we could see that change. While I have some sympathy for the Liberal amendment—and I will support that version of wording—I say to the government that this is a program that has been working successfully for 20 years in New Zealand and for 20 years, the South Australian government has done nothing about this. For 20 years, just across the ditch, we have had evidence that this works. But of course, the South Australian government yet again in the early intervention health sphere says, 'No, we must wait a little longer.' These women who were waiting eight years should not be waiting longer as girls. They should have been given the information that they needed, the one-hour sessions that may well change their lives, much earlier. We can do it for a little over a quarter of a million dollars a year, which will save billions into the future. We should be doing not in a year or two but in the new year as the school term starts.

With that, I commend the motion. I will support the Liberal amendment, which is worded better than the Labor amendment. I look forward to the Labor government paying more attention to this issue and taking it more seriously in the future because, as I reiterate, one in 10 women suffer from this condition.

Amendments carried; motion as amended carried.

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