重建对医疗系统的信任以及归属感的关键

ABC 听播客、广播、新闻、音乐等。

ABC Listen, podcasts, radio, news, music, and more.

你好。

Hi.

我是泰根·泰勒，欢迎收听《生活要事》，在这里，你的故事塑造着全国的对话。

I'm Tegan Taylor, and this is Life Matters, where your stories shape the national conversation.

如果我问你，你最喜欢住在这里的哪些方面？你的第一反应是想到澳大利亚整体，还是你所在的城市，或是你附近的社区？

If I asked you what you love about living here, does your mind snap to thinking here as Australia broadly or the city you live in or your immediate neighbourhood?

我们都希望有归属感，而一份新报告表明，对于移民来说，在你居住的邮政编码区域内获得归属感至关重要，而且这种感觉比对整个国家的归属感来得更快。

We all want to feel like we belong, and a new report shows that for migrants, a sense of belonging in the postcode where you live is key and comes quicker than that feeling of belonging to the country overall.

所以我想知道，你的社区是如何让你感到有归属感的。

So I wanna know how your neighborhood makes you feel like you belong.

接下来，你有没有试过通过压力测试来检验一段新关系，比如邀请你的新伴侣和你一起组装平板家具，或者和你一起去爬山？

Also ahead, have you ever tried pressure testing a new relationship, inviting your new squeeze to help you put together flat pack furniture or climb a mountain with you?

这有用吗？

Is this useful?

这合乎道德吗？

Is it ethical?

接下来全部内容尽在ABC国家广播电台。

It's all coming up here on ABC Radio National.

但首先，昨晚的《四角》节目揭露了对一位著名的墨尔本妇科医生的严重指控。

But first, last night's Four Corners program unveiled serious allegations against a renowned Melbourne gynecologist.

前患者们分享了她们经历多次手术治疗严重子宫内膜异位症的故事，但后来发现病理结果表明疾病证据极少或根本没有。

Former patients of doctor Simon Gordon have shared their stories of going through multiple surgeries for severe endometriosis, only to discover later that their pathology results showed low or no evidence of disease.

一位名叫考特尼·佩顿的患者在25岁之前就被切除了双侧卵巢和子宫，如今已无法自然受孕。

One patient, Courtney Payton, had both her ovaries and her uterus removed before the age of 25 and is now medically infertile.

医疗监管机构APRA正在对戈登医生展开正式调查。

The medical regulator, APRA, is conducting a formal investigation into doctor Gordon.

子宫内膜异位症影响了澳大利亚约七分之一的女性，而获得诊断平均需要六到八年。

Endometriosis affects around one in seven girls and women in Australia, and getting a diagnosis can take on average six to eight years.

对许多人来说，到那时，她们早已为让别人相信自己的疼痛而苦苦抗争多年。

And for many, by that stage, it's already been a long battle just to have their pain believed.

现在，针对这位知名专家的这些指控——戈登医生强烈否认这些指控——让一些患者开始质疑他们寻求帮助的医疗体系。

Now these allegations against a prominent specialist, allegations doctor Gordon strongly rejects, have left some patients questioning the system they turn to for help.

您即将听到一位戈登医生的前患者和一位倡导者的声音，他们将谈谈为恢复子宫内膜异位症患者对医疗体系的信任需要做出哪些改变。

You're about to hear from one of doctor Gordon's former patients and from an advocate on what needs to change to restore trust in the health system for people with endometriosis.

海兰·希尔是戈登医生的一位前患者，我不久前与她交谈，询问她对《四角》节目这期报道的反应。

Helane Hill is one of doctor Simon Gordon's former patients, and I spoke to her a little while ago and asked her how she was reacting to this report from Four Corners.

确实令人震惊。

Definitely shocking.

看到这一切被揭露出来，确实非常震惊。

It was quite shocking to see this all play out and come out.

我认为这同样引发了信任危机，因为你显然会信任你的医生，任何医生，尤其是那些进行手术的医生。

I think it really brings trust into question as well because you obviously trust your doctor, any doctor, especially if they're doing surgery and whatnot.

你信任他们，愿意相信他们说的话。

You do trust them and want to believe what they say.

因此，这不仅令人惊讶，更令人痛心，尤其是对澳大利亚的子宫内膜异位症群体而言，因为关于这种病的研究实在太少了。

So it is quite surprising as well as just devastating, especially for the endo community in Australia because so little research is done about endo.

所以我觉得，这一切曝光之后，让我们又倒退了一点。

So I do feel like it's sort of brought us back a little bit with all of this coming out as well.

回溯到你治疗旅程的起点，你花了多久才得到诊断？

Winding the clock back to the beginning of your journey, how long did it take for you to get a diagnosis?

是的。

Yeah.

不幸的是，花了相当长的时间。

Quite a while as well, unfortunately.

我从青春期初潮开始就出现了子宫内膜异位症的症状。

I did have endometriosis symptoms when I was a teenager when I first started getting my period.

比如请假不去上学、呕吐、剧烈的盆腔疼痛。

Like, stayed home from school, vomiting, horrendous pelvic pain.

我当时吃避孕药是出于其他原因，并不是为了治疗这个病。

And I went on a contraceptive pill just for different reasons, not for treating that.

直到我二十出头停用避孕药后，我的月经症状才越来越严重。

And then it was only once I came off that pill in my early twenties, my periods were getting worse and worse and worse.

我曾经发生过囊肿破裂，但没人认真对待。

And I had a cyst rupture that wasn't taken seriously.

我看了很多医生。

I went to multiple doctors.

我去看了我的全科医生。

I went to my GP.

我对他说：嘿。

I said, hey.

我自己做了研究后，觉得我可能有子宫内膜异位症，因为所有的症状都吻合。

I think I have endo after I'd researched it myself and realized, you know, all the symptoms fit.

她当着我的面说这不可能。

And she told me to my face that it was impossible.

说我得子宫内膜异位症太罕见了，根本不可能。

It was so rare and just impossible for me to have endo.

就在当天晚些时候，我实际上在急诊室被确诊了。

And later that day, I actually got diagnosed at emergency.

所以，我花了好几年才得到确诊，而且有很多医生根本不愿意认真对待或深入调查。

So it took quite a few years for me to get diagnosed and quite a few doctors to even take it seriously to investigate.

那么，你确诊之后，这一生中不得不接受多次手术。

And so then you you have you have it, and you've had to have surgeries over the course of your life.

你能跟我详细说说你都做了哪些手术吗？

Can you talk me through what you've had to have?

是的。

Yeah.

2018年我在急诊确诊后，一位值班的妇科医生第二天早上见了我，并为我安排了两周后的手术，那是我2018年的第一次子宫内膜异位症手术。

So when I was diagnosed in emergency in 2018, a gynecologist on call came and saw me the next morning and had scheduled surgery for me in two weeks' time, and that was my first endometriosis surgery in 2018.

当时，我不懂什么是消融，也不懂什么是切除。

At the time, I didn't know, you know, what ablation was, what excision was.

我几乎一无所知，直到第一次手术后，我才继续研究、深入了解，意识到我需要的是切除手术，因为我担心病灶没有被彻底清除。

I sort of had no idea, and it was only after that first surgery I sort of, you know, kept researching, looking into it, and realized that I wanted and need an excision surgery as I was worried that there was the disease left behind.

病情复发了，又开始生长。

It was growing back, and had recurrence.

所以我2020年见了西蒙，并在2020年、2021年和2022年分别接受了三次手术。

And so I ended up having I saw Simon in 2020, and I had a surgery with him in 2020, another in 2021, and another in 2022.

2022年的那次手术中，我切除了左侧卵巢和双侧输卵管。

And it was my surgery in 2022 that I had my left ovary and both fallopian tubes removed.

我还冷冻了卵子。

I've also frozen my eggs.

我进行了两轮卵子冷冻，之后还出现了其他并发症，需要进行肠切除和其他手术。

I did two rounds of egg freezing, and I've had other complications that I needed a bowel resection and other surgeries for after all of that as well.

我总共接受了八次腹部手术，其中四次直接针对子宫内膜异位症。

So I've had about eight abdominal surgeries total with four of them being directly for endo.

这太严重了。

That is massive.

听起来在整个过程中，你不得不为自己争取权益。

And and it sounds like throughout that that process, you really had to advocate for yourself.

当然了。

Oh, absolutely.

是的。

It yeah.

医生很难认真对待你的疼痛和症状，而不告诉你这一切都是心理作用，这一直是个难题。

It was a it was and still is a struggle for doctors to take your pain seriously, take your symptoms seriously, not tell you it's all in your head.

我以前也听过这种说法。

I've heard that before.

这确实是个巨大的挑战，我虽然还没完全学会，但现在明白我需要寻求第二意见、第三意见，必须自己做足研究，这样才能对自己的决定有信心，对选择的医生有信心。

Like, it is it is a real struggle, and I have not learned, but sort of know now that I need to get second opinions, third opinions, really need to research myself so that I'm confident in my decision, confident in who I'm choosing to say.

是的。

It's yeah.

倡导对我而言至关重要，因为要弄清楚该做什么实在太难了。

Advocacy is something that is super important to me because it's so hard knowing what to do.

如果你信任的医生错了，确实会带来巨大的后果。

And if you trust a doctor and they're wrong, it, yeah, has massive consequences.

你的这段经历让你在倡导领域变得非常坚定。

Part of your journey has led you to become quite strong in the advocacy space.

正如你所说，你与这个社群中的许多人有联系。

As you say, you're connected with a lot of people in that community.

人们对正在进行的这项调查有何反应？

How are people reacting to this investigation that's underway?

是的。

Yeah.

我认为，诚实地讲，澳大利亚所有子宫内膜异位症患者都在关注并等待事情的发展。

I think, honestly, everyone with endo in Australia is sort of watching and waiting to see what's going to happen.

人们担心的还有那些尚未确诊，或正在考虑接受手术的人。

A concern that people have is as well people that maybe that aren't diagnosed yet or, you know, are looking to have their surgery.

他们可能会认为手术是一件负面的事情，但实际上，切除手术仍然是金标准。

They might think that having surgery is a negative thing, whereas it is still considered the gold standard standard having excision surgery.

因此，这是一个令人担忧的问题，因为这影响的不仅是西蒙·戈登的患者，而是所有人。

So it is a concern that this, you know, impacts everyone, not just Simon Gordon's patients.

如果你能改变澳大利亚治疗子宫内膜异位症的某一件事，你会改变什么？

If you could change one thing about how endo is treated in Australia, what would it be?

我 definitely 认为需要认真对待的一点是，这不仅仅是一种妇科疾病。

One thing I definitely think needs to be taken seriously is that it's not just a gynecological disease.

它是一种全身性疾病，做手术时并不仅仅需要妇科医生。

It is a whole body disease, and it's not just a gynecologist you need for surgery.

组建一个团队非常重要，包括疼痛专家、优秀的全科医生，甚至盆底物理治疗师，让这些专家共同协作、共同决策，而且，是你可以信任的医生。

It's really important to have a team, have a pain specialist, have a really good GP, maybe even a pelvic physio, and have specialists that work together, decide things together, and, yeah, ones that you trust.

但我确实认为，也很重要的是要强调，这不仅仅是经期疼痛。

But I do think it is really important as well to emphasize it's not just period pain.

它远不止于此。

It's so much more than that.

我认为，不幸的是，有些人仍然认为这只是经期疼痛，而事实绝对不是这样。

And I think some people, unfortunately, still think it is just period pain, which it is absolutely not.

这是与子宫内膜异位症共处的海伦·希尔，她分享了自己对墨尔本妇科医生西蒙·戈登调查事件的反应。

So that's Helene Helene Hill, who lives with endometriosis, sharing her reaction to the investigation into Melbourne based gynecologist, doctor Simon Gordon.

在就四角新闻调查中提出的指控所作的声明中，戈登医生表示：在我的整个职业生涯中，我从未在没有绝对确信手术符合患者最佳利益并能改善其整体生活质量的情况下，进行过任何治疗子宫内膜异位症或其他疾病的手术。

In a statement provided to Four Corners regarding the allegations raised in its investigation, doctor Gordon said, across my entire career, I never performed surgery to treat endometriosis or any other condition unless I was absolutely convinced it was in the patient's best interests and to improve their overall quality of life.

尽管绝大多数手术成功缓解或消除了患者的疼痛，但任何外科医生都无法保证每台手术都绝对成功，也无法排除复发的真实风险。

While the vast majority of surgeries were successful in relieving or eliminating patients' pain, no surgeon can ever guarantee that every surgery performed will be totally successful or that there's not a genuine risk of recurrence.

今天早上ABC的进一步报道指出，医疗监管机构APRA驳回了多位女性对戈登医生的投诉。

And further reporting from the ABC this morning states that the medical regulator, APRA, dismissed multiple women's complaints regarding doctor Gordon.

然而，在《四角》调查之后，该机构收到了大量新的投诉，目前正在审查中。

However, following the Four Corners investigation, it's received a flood of new complaints that are under review.

因此，我们将发布戈登医生给《四角》的完整声明，以及其在《生活要事》网站上的相关报道链接。

So we'll include doctor Gordon's full statement to Four Corners and a link to its reporting on the Life Matters website.

节目结束后，您可以前往阅读这些内容。

You can go and read up on all that after the program.

但现在和我在一起的是子宫内膜异位症支持网络Quendo的首席执行官杰西卡·泰勒。

But with me right now is Jessica Taylor, who's CEO of Endometriosis support network, Quendo.

杰西，欢迎来到《生活要事》。

Jess, welcome to Life Matters.

谢谢你们邀请我。

Thanks for having me.

刚才听了海伦的故事，还有你在工作中所倡导的那些人，你听到了哪些主要的声音？

Listening to Helene's story before, sorry, and and the people who you're advocating for in your in your work, what kind of messages are you are you seeing coming through?

我们看到了大量情绪的流露，这完全可以理解。

So we're seeing lots of emotion, understandably.

这是一个非常令人痛心的话题，我想先对此表示认可。

This is a really distressing topic and just want to acknowledge that.

在任何时候，我都鼓励大家如果感到需要，就暂时休息一下，离开网络。

And at any stage, I'd encourage the community to take a break and go offline if you need to.

我们不仅从患者及其家人那里听到了焦虑、沮丧和愤怒，也从我们合作的更广泛的医疗专业人士那里听到了这些情绪，因为我们听到的一切都令人极度震惊。

We're seeing anxiety, frustration, anger from not only the patients and their families, but also the wider health professionals who we work with because this is just absolutely horrifying what we're hearing.

昨晚观看了《四角》节目，我全身都起鸡皮疙瘩，再听一遍那个故事时依然如此。

And watching the Four Corners episode last night, goosebumps were just all over my body and just listening to that story again.

这并不是一个罕见的故事，而这正是我们需要改变的地方。

It's not an uncommon story, which is just where we need to see change.

这个群体也展现了巨大的勇气，因为谈论这个话题、挑战医疗行业是非常困难的，但受此影响的女性和人们依然勇敢地说出自己的真相，因为那就是他们所经历的，我们必须支持他们。

There is also courage from this community because this is a really hard topic to talk about, to go and speak against the medical profession, but women and people affected, they're coming with their truth because that is what they experienced, and we need to get behind that.

信任这个话题已经提过几次了。

The topic of trust has come up a couple of times.

当我们谈论子宫内膜异位症时，为什么信任如此脆弱？

Why is it so fragile when we're talking about endometriosis?

几十年来都是如此。

For decades.

Quendo自1988年就已存在。

Quendo has been around since 1988.

早在那之前，人们就得不到对其症状的相信。

And since before then, people weren't believed about their symptoms.

他们被告知，正如我们听到的那样，这都是你的心理作用，或者你不可能患有子宫内膜异位症，因为扫描看不到。

They were told, as we heard, that it's all in your head, or you couldn't possibly have endometriosis or we can't see it on a scan.

多年来，这使人们感到孤立，长期忍受这些症状，甚至真的怀疑：是我自己有问题吗？

And that over years has left people isolated, living with these symptoms and genuinely thinking, is there something wrong with me?

我本人是布里斯班的一名患者，也亲身经历过这些。

I'm a patient myself in Brisbane here, and I've also lived through those experiences.

当你连续听上十年，甚至二十年，都听到这样的话，你开始质疑自己，自信心完全崩塌，自我掌控感荡然无存。

And so when you hear that again and again for up to ten years, some even up to twenty, you start to question yourself and your confidence and your self agency completely gets thrown in the bin.

因此，当你试图去信任医疗体系、信任医护人员时，而这种信任感和你对自己的认知本就已很低，那么，当然，如果你要去见一位在社区里广受认可和信赖的医生，你自然会听从他们的话。

So when you are then, asking to trust the medical profession, asking to trust health professionals, when that trust and that lack of knowledge yourself is already low, well, yeah, if you are going to see someone who is considered to be really well known and trusted in the community, of course, you're going to listen to them.

您正在收听ABC国家广播电台的《生活要事》。

You listen to Life Matters here on ABC Radio National.

我是泰根·泰勒，正在与Quendo子宫内膜异位症支持网络的首席执行官杰丝·泰勒对话，背景是《四角》节目对一位著名的墨尔本妇科医生展开的调查，这位医生面临严重指控，而这类指控对那些多年来长期被误诊、不得不极力为自己发声的患者群体所造成的信任体系冲击。

I'm Tegan Taylor talking to Jess Taylor, who's the CEO of endometriosis support network Quendo in the wake of Four Corners' investigation into a prominent Melbourne gynecologist who has allegations serious allegations coming against him, and just the destabilizing effect that allegations like that have on the trust in a system for people with a disease that has been underdiagnosed over the years and that people have felt like they've got to advocate for themselves a lot.

我想问你，如果你患有子宫内膜异位症，这件事对你意味着什么？你对此有何感受？

I'm asking you, if you live with endometriosis, how this has landed for you, how you're feeling about it?

我们收到了大量短信。

Lots of texts coming through.

有一条说：我去年40岁时终于确诊，但从12岁起就一直有严重症状。

One says, I finally got diagnosed last year at 40 after having severe symptoms from 12 years old.

我一次次被忽视，彻底失去了对医疗体系的信任。

I got dismissed over and over and completely lost faith in the system.

我被严重误导了，以至于都不相信自己了。

I was so gaslit, I didn't believe myself.

我成长在一个经济困难的环境中，找一个愿意诊断的医生实在太贵、太让人不知所措了。

I grew up in a financially challenged environment, and it was all just too expensive and overwhelming finding a doctor who would diagnose.

那时候没有专门的医生，我们也很难获取相关信息。

They weren't specialists back then, and we didn't have easy access to information.

我见过那位医生，虽然每次都准备做手术，但最后还是放弃了。

I've seen the doctor in question, and I always went ahead with surgery but decided against it.

杰丝，无论怎样，做手术都是一个重大的决定。

Jess, the the idea of having surgery is a really big one regardless.

你该如何做出这样的决定呢？

How do you make a decision like that?

很长一段时间以来，我们只知道手术是被推荐的方案。

So for a really long time, what we knew was that surgery was the option that was suggested.

但近年来，我们实际上发现了一些数据，显示只有不到百分之四十的患者在接受手术后获得了某种程度的症状缓解。

Since that time in recent years, we've actually been able to find some data that only less than forty percent of patients that have surgery do have some sort of symptomatic relief.

现在，当我们谈论子宫内膜异位症时，我们需要区分子宫内膜异位症的病灶和症状。

Now, when we talk about endometriosis, we need to separate out the lesions of endometriosis and also the symptoms.

有些人可能只有少量病灶，却承受着巨大的疼痛；而另一些人可能整个盆腔甚至身体其他部位都有病灶，却可能没有任何症状。

Someone that may have a small amount of disease may actually be in enormous amounts of pain, versus someone who might have disease all throughout their pelvic cavity or in other parts of their body may have no symptoms at all.

因此，疾病的严重程度与患者所承受的症状数量并不相关，这正是其复杂性所在。

So the disease does not correlate to the amount of symptoms someone's living with, and this is why it's complex.

所以，当有人考虑手术时，我们会请他们思考：好吧，我目前正承受着哪些症状？

So when someone's going for surgery, we ask them to think, Okay, well what are the symptoms that I'm living with?

那么，到底是什么真正阻碍了我去工作、上学和过自己的生活呢？

And what is really stopping me from getting to go to work, go to school and live my life?

当我们也在考虑手术时，需要了解其他哪些器官会受到影响。

When we are also looking at surgery, want to understand what other organs are impacted.

因此，在最近几年，我们实际上有了新技术，可以在由训练有素的超声检查师操作并由放射科医生解读扫描结果时检测出子宫内膜异位症，而且他们拥有这项新技术。

So in most recent years, we actually have new technology that can pick up endometriosis when it is performed by a well trained sonographer and a radiologist reporting on that scan and they have the new technology.

这是不同的。

This is different.

多年前，我们做不到这一点。

Years ago, we couldn't do that.

因此，由于这一领域研究的进展，情况正在发生变化。

So this is changing because of the research going into this space.

所以，当我们进行子宫内膜异位症和盆腔疼痛检查时，我们会关注其他哪些器官受到了影响。

So, when we are going for an endometriosis and pelvic pain scan, we're looking at what other organs are impacted.

卵巢是否受到影响？

Is the ovaries impacted?

肠道或膀胱是否有问题？

Is there some issue with the bowel or the bladder?

这样，如果我们决定进行手术，就能事先做好规划。

So that if we do go for surgery, it's actually mapped out.

我们还要弄清楚，需要的是妇科医生，还是需要请结直肠外科医生参与？

And we're also understanding, is it a gynaecologist that we need, or is it a colorectal surgeon we bring in?

如果我们确实需要手术，我们希望一次就能做好，但同时我们也需要为这些患者组建一个团队。

We want to do, if we do need to go for surgery, do it once and do it right, but then we need a team around these patients.

你绝不会在做完髋关节或膝关节置换手术后，未经物理治疗师评估就出院。

You would never be discharged after having a hip replacement or a knee replacement without being signed off by physio in the hospitals.

然而，当人们接受针对子宫内膜异位症的重大手术或腹腔镜手术时，盆底健康物理治疗却极少获得资金支持，也很少能真正见到患者。

Yet, when people are having significant surgery and laparoscopies for endometriosis, it's very rare that the pelvic health physio is funded or actually gets to see them.

正是这种过度依赖手术治疗的方式让我们陷入了困境，我们呼吁建立多学科团队。

This is where the reliance on surgical management has really failed us and we are calling for that multidisciplinary team.

这意味着需要盆底健康物理治疗师。

And that means a pelvic health physio.

骨盆是一个复杂的区域。

This pelvis is a complex area.

这里有神经、有肌肉，支撑着我们众多的器官。

There's nerves, there's muscles, it's holding up so many of our organs.

无论是因疼痛还是接受手术治疗对这一区域造成的创伤，都需要被充分考虑。

And trauma to that, whether it be from pain or going in and doing some sort of surgical treatment, that also needs to be considered.

此外，我们还要承受这一切带来的心理负担：手术前的焦虑、经济压力，以及对性关系和工作的影响，这些都令人不堪重负。

Then we have the mental load that all of this carries, the lead up to surgery, working out finances, understanding what the impacts on sexual relationships or work, that's a lot to carry.

我们知道，我们的神经系统可能会感到极度失调，而这也会加剧疼痛。

And we know that our nervous system can feel really dysregulated, which then can also increase our pain.

因此，通过心理咨询或心理健康领域的支持性人士来帮助处理这些情绪是有帮助的。

So working with counselling or a supportive person in the mental health space can help to process things.

这不仅仅是身体上的病灶，还有更多层次的问题。

It's not just lesions in the body, there's so many more layers to this.

所以当我们考虑手术时，需要弄清楚它的益处和风险是什么？

So when we're going for surgery, it's working out what are the benefits, What are the risks?

有哪些替代方案？

What are the alternatives?

总会有其他替代选择。

There's always an alternative option.

你的直觉告诉你什么？

What does your instinct tell you?

如果你什么都不做，会怎样？

What if you do nothing?

那我能否寻求第二意见或获得其他支持？

And then can I get a second opinion or seek secondary support?

针对这些指控，联邦卫生部长马克·巴特勒发表了以下声明。

In response to the allegations, Federal Health Minister Mark Butler had this to say.

不用说，这些女性已经被系统辜负了。

It goes without saying, these women have been let down by the system.

我们现在的工作是确定如何确保此类事件不再发生，以及如果这些指控被证实，如何让此人受到法律制裁。

Our job now is to determine how we can ensure this doesn't happen again, and how, if these allegations are proven, this person is brought to justice.

听到他说这些，我们需要做些什么来确保这种情况不再发生，建立相应的措施？

So hearing him saying there, what do we need to do to make sure this doesn't happen again, putting steps in place?

我们需要做些什么，杰西？

What what do we need to do, Jess?

在梳理这个问题上，已经做了大量工作。

There has been so much work in mapping this out.

因此，澳大利亚子宫内膜异位症联盟致力于汇聚各方声音，去年，他们在全澳大利亚举办了多场圆桌会议，探讨‘我们需要建立适当的资质认证和临床实践范围。'

So the Endometriosis Coalition of Australia works to bring the voices together, and last year, they did roundtables all across Australia, which looked at, 'Okay, we need appropriate credentialing and scope of clinical practice.

我们需要资金充足的多学科团队。

We need appropriately funded multidisciplinary teams.

这需要通过医疗保险来资助，不仅用于手术，还要用于与这些患者相处的时间。

It needs to be funded through Medicare not just to operate but to spend time with these patients.

这很复杂。

This is complex.

因此，医疗保险体系的设计激励的是手术操作。

So the Medicare system is built with the incentive to operate.

我们如何为那些身处这一领域的人提供更多资金支持，无论是盆底康复理疗师、多学科团队还是妇科医生，以便他们能留出时间来应对这种复杂性？

How do we bring in more of a financial support for people who are in these worlds, whether it be pelvic health physio, multidisciplinary team or gynae, to then hold space and look at that complexity.

引入疼痛专家。

Bring in pain specialists.

目前，有一支日益壮大的专业队伍对这一领域充满浓厚兴趣。

Now, there is a growing workforce out there who has a deep interest in this space.

他们对这一领域充满热情。

They're so passionate about this.

现在，我们需要这些更大的改革，以及一个能够报告和反思的系统。

Now, we need these larger reforms and then also a system to report and reflect.

我们身边有许多优秀的妇科医生在做正确的事。

We have incredible gynaecologists out there doing the right thing.

他们都在恪守伦理行医。

They are practicing ethically.

我们不希望看到这些服务被关闭，而是应该将他们凝聚起来，确保最佳实践或金标准中包含这样的团队。

We don't want to have this as a village shut down, but bring them together and ensure that the best practice or the gold standard does include that team.

我知道子宫内膜异位症联盟多年来一直就此致信部长，甚至致信总理。

And this is something that I know the endometriosis coalition has written to the minister about over the years and also the prime minister.

杰丝，非常感谢你今天早上加入我并分享你的见解。

Jess, thank you so much for joining me and sharing your thoughts this morning.

杰西卡·泰勒是子宫内膜异位症支持网络Quendo的首席执行官。

Jessica Taylor is the CEO of endometriosis support network, Quendo.

你今天早上还听到了子宫内膜异位症患者和倡导者海伦·希尔的发言，我也非常感谢你在短信线路中提供的宝贵见解。

You also heard from Endometriosis patient and advocate, Helene Hill, and I've really appreciated your insights as well this morning on the text line.

彼得说，你能否在广播中提到，男性和雇主需要对患有子宫内膜异位症的女性表示理解？

Peter says, can you please include in your broadcast that men and employers need to be empathetic towards women with endometriosis?

另一个人问，这种病的发病率在上升吗？

Another says, is it increasing in prevalence?

我六十多岁了，我相信当年有很多未被诊断出来的患者。

I'm in my sixties, and I'm sure they were undiagnosed sufferers.

听听那些如今回望自己曾未被诊断出子宫内膜异位症的人的故事会很有意义。

It would be good to hear people who now reflect on undiagnosed endo.

确实如此。

Absolutely.

正如我之前所说，我们会把西蒙·戈登医生给ABC四角节目的完整声明发布在《生活事务》网站上。

Well, we'll put the full statement that doctor Simon Gordon gave to the ABC Four Corners on the Life Matters website, as I said before.

我还想说，如果这个故事触动了你，你可以寻求支持。

And I should just say, if this story has affected you, you can reach out for support.

生命热线电话是131114。

Lifeline is on 131114.

Beyond Blue 的热线是 130224636。

Beyond Blue is on 130224636.

您还可以联系医疗监管机构 APRA，电话是 130419495，当然还有子宫内膜异位症支持组织 Queendo，电话是 1800 180275376。

You can also contact the medical regulator, APRA, 130419495, and, of course, endometriosis support organization, Queendo, 1800, 180275376.

接下来，在 ABC 国家广播电台的《生活事务》节目中，我们将探讨：谁有资格在你的社区中拥有归属感？

Well, coming up next here on Life Matters on ABC Radio National, who gets to belong in your local neighborhood?

当你结束漫长的一天工作回到社区时，是否有一种回家的感觉，觉得自己真正属于这个地方？

When you return to your neighborhood after a long day at work, do you feel a sense of coming home, like you're returning to a place where you really belong?

一项关于多元文化的新报告表明，对于移民而言，在你居住的邮政编码区域内获得归属感至关重要，而且这种归属感的形成速度往往快于对整个国家的归属感。

A new report into multiculturalism shows that for migrants, a sense of belonging in the postcode where you live is key, and that comes quicker than a sense of belonging to the country overall.

但社区正在迅速变化。

But neighborhoods are changing quickly.

租金上涨和绅士化正在重塑社区，有时甚至将最初让这些社区充满活力的文化身份排挤出去。

Rising rents and gentrification are reshaping communities, sometimes pushing out the very cultural identities that made them vibrant in the first place.

所有这些都发生在关于移民的激烈、公开的讨论背景下，而这些辩论常常围绕着“谁才有资格拥有归属感”展开。

And all of this is unfolding against the backdrop of loud, very public conversation about immigration and debates that often center on who gets to belong in the first place.

那么，对于试图在澳大利亚安家的新移民来说，未来的道路是什么？

So what is the path forward for new migrants trying to build a life in Australia?

和我在一起的是来自墨尔本马里伯农市议会的市长穆罕默德·塞姆拉。

And with me is Mohammad Semra, the mayor of Maribyrnong City Council in Melbourne.

穆罕默德，你今年27岁。

Mohammad, you're 27.

你已经取得了相当长的一串成就。

You've already racked up a pretty long list of accomplishments.

你是墨尔本市中心一个市议会的市长。

You're the mayor of an inner city Melbourne council.

但请带我回到你刚搬到马里伯农的那些第一天。

But take me back to those very first days when you moved to Maribyrnong.

你的社区当时是什么样子？

What was your neighborhood like?

你好。

Hello.

非常感谢您邀请我参加节目。

Thank you so much for having me on.

当我刚到墨尔本时，最让我印象深刻的是这里的多元文化。

So when I first arrived in Melbourne, what struck me the most was the diversity.

墨尔本拥有一个充满活力的多元文化社区，是澳大利亚最具多元文化特色的城市之一。

The city of Melbourne has a very vibrant multicultural community, and it is one of the most multicultural cities in Australia.

你知道，这里的居民来自100多个不同的国家，说着80多种语言。

You know, residents are from more than a 100 different countries and speak more than 80 languages.

我记得，举个例子，我经常去Playbook社区中心，那里有一个非常漂亮的、形状像飞机的游乐场。

And I remember, to give you an example, I always used to frequently visit the playbook community center, and there was a beautiful playground shaped like an airplane.

当我去游乐场时，我经常看到很多和我一样来自移民背景的人，来自苏丹、索马里、厄立特里亚。

And when I used to go to the playground, I used to see so many people who looked like me from, migrant backgrounds, from Sudan, from Somalia, from Eritrea.

这大大增强了我的归属感。

And it definitely increased my own sense of belonging.

马尔文农有着鲜明的特色。

And there is a strong character to Malvernon.

你知道吗，人们会互相照应，我们有一个充满支持的社区。

You know, people look after each other, and we had a strong, supportive neighborhood.

我觉得我妈妈作为单亲妈妈，要抚养六个孩子，肯定经历了不少困难，但她展现了非凡的领导力，而这一切都得益于我们当地的社区中心、邻里互助站，尤其是那些友善的邻居们。

And I think being my mom being a single mom with like six kids, you know, she definitely, you know, had some hardship, but she's had immense leadership, and she was supported through our local neighbor neighborhood houses, community centers, and especially those friendly neighbors.

那么，你们的社区做了什么，真正让你和你的家人感到归属感呢？

So what was it that your neighborhood did that really made you and your family feel like you belonged?

我觉得是因为那种关心和友善的态度。

I think it was that sense of, you know, checking in, being kind.

我们曾经有个邻居，家里种了一棵柠檬树。

And we used to have a neighbor that had a lemon tree.

在一些随机的周末，她会打开门，主动送一些柠檬给我们。

And on random weekends, she'll come unlock and offer some lemons.

正是这些小小的善意举动，提醒着我们，我们确实属于这里。

It was the small acts of kindness that reminded us that we did belong.

和我在一起的还有特里什·普伦蒂斯，她是斯坎兰研究所《聚焦多元文化》报告的主要作者。

Also with me is Trish Prentiss, who's the lead author of this Multiculturalism in Focus report from the Scanlan Institute.

特里什，听穆罕默德的故事，对你来说感觉如何？

Trish, how does it feel to listen to Muhammad's story there for you?

嗯，我确实能理解这些经历，虽然不是亲身经历，而是来自我所访谈的那些人。

Well, I can certainly relate to those experiences, not necessarily firsthand, but from the individuals I spoke to.

因此，这份报告我们特别关注了来自澳大利亚增长最快的一些移民群体的个体经历。

So this report, we were particularly interested in the experiences of individuals who'd come from some of Australia's fastest growing migrant communities.

我向他们询问了他们在当地社区的归属感，以及他们对澳大利亚的归属感。

And I asked them about their sense of belonging in their local neighbourhoods and their sense of belonging to Australia.

在本地社区层面，与他人建立的这种联系对他们产生归属感至关重要。

And in terms of the at that local neighbourhood level, that that sense of connection through to people was critically important for their sense of belonging.

他们提到一些经历，比如早上有人向他们打招呼，露出微笑的脸庞。

They talked about experiences like having people greet them in the morning, those smiling faces.

他们谈到建立了可信赖的关系，当他们外出时，邻居会帮忙照看房子、留意情况，或者早上帮他们倒垃圾。

They talked about having trusted relationships where they could leave their house to go away, and the neighbours would look after it for them or keep an eye on it or take out their bins for them in the morning.

他们谈到在本地社区中可以依靠的人，这些经历和关系极大地增强了他们在当地社区的归属感。

They talked about having people they could rely on in the local community, experiences and those relationships really contributed to their sense of belonging in the local neighborhood.

这真是非常温馨的内容。

That's really lovely stuff.

我觉得这非常随意。

I'm thinking it's very informal.

比如，社区有没有什么办法可以将这种氛围正式化，如果他们真的想优先营造包容的环境呢？

Like, are there any things that neighborhoods can do to formalize that if they really wanna prioritize being welcoming?

我认为除了这些非正式的关系，当然也可以采取一些正式的措施。

I think there are certainly formal things that can be done as well as those informal relationships.

我认为地方政府在促进社会联系方面发挥着非常重要的作用，可以通过创造让人们能够走出家门、感到安全并自由交流的公共空间来实现。

Local councils, I would argue, play a really important role in in fostering social connection, and And that can be in different ways by creating spaces or places where people can come out in public and feel safe and intermingle.

也可以通过提供让人们聚集在一起的设施来实现。

It can be with facilities that bring people together in groups.

还可以通过在本地培养一种欢迎的文化，这一点同样非常重要。

And it can be just, I guess, a culture developing a culture in the local area of of welcome, which is really important as well.

那么，请告诉我，这种在本地社区有归属感与在整个澳大利亚有归属感之间的差异是怎样的？

So tell me about this kind of divide between feeling like you belong in your local neighborhood and feeling like you belong in Australia as a whole.

在我进行的访谈中，当我和人们聊起他们对当地社区的归属感时，情况非常有趣。

It was really interesting in the interviews that I did when I spoke to people about their sense of belonging to their local community.

这一点非常明确。

That was really clear.

当我问及‘是什么让你感觉有归属感？’时，大多数回应都指向这一点。

And most of the responses when I said, what makes you feel belong like you belong?

这些回应非常一致，指的就是那些社会联系。

They were really consistent, so those social connections.

但当我询问人们对澳大利亚的归属感时，归属感就没那么强烈了。

But when I asked people about their sense of belonging to Australia, there was a less strong sense of belonging.

而且当我询问人们为什么会这样时，无论是积极还是消极的原因，都给出了更多解释。

But also that when I asked people about why that was the case, whether positively or negatively, there were more reasons given for that.

所以国家层面的归属感是通过与社区层面不同的过程和体验来实现的。

So that sense of belonging at a national level comes through different processes and different experiences to that at a community level.

您正在收听的是澳大利亚广播公司国家广播电台的《生活万象》节目。

You're listening to Life Matters here on ABC Radio National.

我是特根·泰勒，今天我们讨论的是归属感，尤其是在社区层面。

I'm Tegan Taylor, and we're talking about belonging, especially at the neighborhood level.

我在这里与斯坎兰基金会研究所的特里什·普伦蒂斯交谈，她是《聚焦多元文化》报告的主要作者，还有来自墨尔本马里伯农市议会的市长穆罕默德·塞姆拉。

I'm here chatting with Trish Prentiss from the Scanlan Foundation Research Institute, who's the lead author of the Multiculturalism in Focus report, and Mohamed Semra, who's the mayor of Maribyrnong City Council in Melbourne.

我也在这里与巴基斯坦澳大利亚文化协会主席赛义德·纳克维交谈。

I'm also here with Syed Nakvi, who's the president of the Pakistan Australian Cultural Association.

特里什提到，澳大利亚有六个群体的人口正在快速增长。

Trish mentioned there were six groups of of of folks of rapidly growing populations in Australia.

巴基斯坦就是其中之一。

Pakistan's one of them.

赛义德，欢迎你。

Syed, welcome.

早上好，凯根和所有ABC的听众。

Good morning, Keegan and all ABC listeners.

非常感谢你们今天的邀请。

Thank you so much for the invitation today.

你最早是2003年来到澳大利亚的。

So you first came to Australia in 2003.

跟我讲讲你刚来时的那些日子吧。

Tell me about this the early days there.

我听了特里什的分享，还有那些啤酒。

So I I listened to Trish as well and as the the beer.

确实如此。

It's so right.

当我刚到这儿时，我抵达了维多利亚州的吉朗。

Like, when I arrived here, I arrived in Geelong in Victoria.

那是个非常美丽的小城。

It was such a beautiful town.

每个人都热情友好，面带微笑。

Everyone was welcoming, smiling.

所有这些经历。

That all those experiences.

所以，任何来到这里的人，这些经历——甚至有人谈到社会联系、善意和同理心——都是如此重要。

So anyone who comes in, these experiences why even someone's talked about social connection, being kindness, empathy as well.

如果你遇到一个人，如何与一个外貌不同、文化背景相异的人建立联系，这在我所有在吉朗的美好经历中都至关重要，后来在昆士兰的经历也塑造了今天的我，让我热爱我的社区，热爱我的澳大利亚。

If you see someone, how you connect with someone who doesn't look like you, who doesn't follow the the same cultures, that matters so much in all my wonderful experiences in Geelong and then here in Queensland has shaped me to what where like, I love my neighborhood and I love my Australia.

你也搬过几次家。

You've moved around a little bit as well.

你在澳大利亚不同地区看到了什么？

What have you seen in different parts of Australia?

正如你提到的，即使是巴基斯坦人，我们巴基斯坦人大多数都是技术移民。

So as you mentioned about even Pakistanis, so we Pakistanis majority of Pakistanis are skilled migrants.

作为一名技术移民，我在维多利亚州住了十多年，在昆士兰州也住了八年。

And as a skilled migrant, I have lived in Victoria for for more than ten years, here in Queensland for eight years as well.

澳大利亚是多元化的，你去两个不同的地区，可能会遇到不同的问题，但核心问题完全一样。

Australia is diverse, and you go into two different areas, there would be different issues, but the the core things are exactly same.

那种伙伴情谊，比如微笑，甚至那些问题，无论是生活成本，还是我们现在如何看待移民，都完全一样。

The mateship, like the the smiles, even like the the problems, whether it's cost of living or whether you think about how we are looking at immigrants right now, it's exactly same.

我想谈谈这方面的问题。

I do wanna talk about that side of things.

说澳大利亚是微笑之国，很棒，这都没错。

It's all great to be like, yeah, Australia, the land of smiles, fantastic.

但我们不能忽视每天都在发生的文化冲突。

But we can't ignore the fact that there's cultural arguments playing out every other day.

穆罕默德，在一些言论相当不友好的时候，你如何应对这种归属感？

Mohammad, how do you navigate this sense of belonging in a time where some of the narratives are quite unwelcoming?

是的。

Yeah.

你知道，国家层面的辩论会渗透到街头巷尾，我认为理解这一点很重要。

You know, national debates filter down to local streets, I think it's important to understand that.

当移民和其他人被描绘成问题，或者某些社区被 singled out 时，人们是能感受到的。

And when migration and other people are now framed as a problem, or communities are signaled out, You know, people feel it.

我知道我年轻时就有这种感受，当时我的社区有时被当作政治工具。

I know I felt it when I was younger, when my community at times was used as a political football.

而且，谁有资格决定谁属于这里，这个问题本身就很有力量。

And, you know, the question of who gets to say who belongs is powerful.

我认为，当我们谈论我们的责任，以及我作为市长所认为的我的责任，还有议会能做些什么时，关键在于投资于共享空间。

And I think when it comes to what our responsibility is and what what I see as my responsibility as mayor and what councils can do, it's to invest in shared spaces.

阿马希什之前提到过，当叙事超出我们的控制，也超出年轻人的控制时，很容易自我排斥，也很容易不觉得自己属于这里。

Amashish was mentioning before because when the narrative is outside of our control and outside of young people's control, it is easy to self reject and it's easy to, you know, not feel like you belong.

你所说的共享空间是指哪些类型的空间？

What kind of shared spaces are you talking about?

我记得我上学的时候，觉得自己不属于那里，因为课程里没有体现我，教职员工里也没有我的身影。

So I remember when I used to go to school, I didn't feel like I belonged because I didn't see myself represented in the curriculum, I didn't see myself represented in the staffing.

当你在某个环境中感觉不到自己的存在时，很容易与之疏离。

And it's easy to to disassociate yourself from an environment where where you feel like you're not represented.

在家的时候，我是苏丹人，说阿拉伯语。

When I was at home, I was Sudanese and I spoke Arabic.

在学校的时候，我是澳大利亚人，说英语。

When I was at school, I was Australian and I spoke English.

但我从未真正感觉到有一个地方可以让我完全做自己。

But I never really felt there was a place where I could be fully myself.

当我回顾是什么真正帮助我接纳自己的身份并茁壮成长时，我发现是我的本地体育俱乐部。

And when I looked look at what really enabled me to, you know, accept my identity and really thrive was my local sporting club.

我年轻时打篮球，曾是‘高风险青年’篮球项目——Les Tournament基金会青年队的一员。

I played basketball when I was younger, a part of the Les Tournament Foundation's basketball youth team for At Risk Youth.

在那里，他给了我一个宣泄的出口。

And when I was there, he gave me an outlet.

他给了我一个建立友谊的地方。

He gave me a place to form friendships.

他给了我一个提升自信的空间，也让我培养了许多我认为对形成成长型思维至关重要的软技能。

He gave me a place to, you know, improve my confidence, and a lot of the soft skills that I think were important in enabling me to have a growth mindset.

还有许多其他共享空间的例子，人们可以在那里更深入了解他人、不同的文化和族裔，建立文化意识与理解。

And there's so many other examples of of shared spaces where you can learn more about other people and different cultures and ethnicities and build cultural awareness and understanding.

嗯，赛义德，你其实也在做一些类似的工作。

Well, Syed, you've sort of trying to do a bit of this work as well.

你的组织覆盖了整个昆士兰州，但去年热带气旋阿尔弗雷德过后，你所在地区的巴基斯坦社区特别活跃。

Your organization covers all of Queensland, but you were particularly active the Pakistani community in your area was particularly active after tropical cyclone Alfred last year.

是的。

Yes.

确实如此。

That that's true.

我想补充一下穆罕默德的观点。

And I'd just like to add to Mohammad's point as well.

这些讨论正是我们当下所需要的，非常重要。

These are so critical discussions which we need right now as well.

种族主义是真实存在的。

Racism is real.

无论是反犹太主义、伊斯兰恐惧症，还是归属感，当我们看到这些情绪表露在脸上时，就能察觉到。

Whether anti Semitism, Islamophobia, and the sense of belonging is when we see it under the face.

这不仅仅关乎种族主义。

And it's not just about like just racism.

任何针对不同肤色的人的仇恨，无论是白人、棕肤色，还是其他任何群体，我们都必须进行这样的讨论。

Anything, anyone hating even on any different color like whites, browns, or any any anything there like we look at, we need to have this discussion.

这是我们的国家，澳大利亚。

This is our country, Australia.

我们属于这里，这才是最重要的。

We belong here, and that is the most important thing.

当你提到阿尔弗雷德飓风来袭时，我们这些具有巴基斯坦血统的澳大利亚人，正体现了仇恨滋生仇恨，但爱也同样艰难。

So when you talked about the the Alfred, when Alfred hit us, we were Australians from Pakistani heritage, and that is like the the message that hatred feeds on hatred, but like love is difficult as well.

当你属于一个社群时，你会为所有人挺身而出。

And when you are a community which belongs, you stand up for everyone.

因此，在阿尔弗雷德飓风过后，我们在昆士兰州也组织了食品捐赠活动。

So post Alfred, we did food drives across Queensland as well.

我们有超过一百名来自巴基斯坦裔澳大利亚背景的志愿者，帮助分发药品和人们急需的物资。

We did we had more than 100 plus volunteers from Pakistan Australian background who were helping out with with even medicines, even like necessary stuff for people who doesn't have anything.

这一切都至关重要，不仅来自巴基斯坦社群，也在于我们重新赢回了爱。

And all of this matters not just from Pakistani community, even getting the the love back as well.

特里什，考虑到赛义德和穆罕默德所谈到的这些主题和挑战，这些在你的报告中有所体现吗？

Trish, thinking about these themes and challenges that Syed and Mohammed are both speaking to, does this bear out in your report?

是的。

Yeah.

当我采访一些个体时，确实有一些人谈到了他们在澳大利亚经历的歧视或种族主义，这影响了他们的归属感。

We when I interviewed individuals, there were certainly some who who spoke to their experiences of discrimination or racism in Australia, and and that did impact their sense of belonging.

如果你把归属感理解为一种群体成员身份，当你感知到自己遭受歧视或经历种族主义时，你实际上会感到被排除在群体之外，觉得自己不属于这里。

If you think about belonging as a sense of kind of group membership, when you are when you perceive that you're being discriminated against or experiencing racism, that you're essentially feeling that you're excluded from the group, that you don't belong.

因此，这当然会在情感层面、社会层面以及其他层面深刻地影响人们。

And so that does, of course, impact people very deeply at that emotional level and and and at the social level and other levels as well.

沙耶特？

Shayet?

嘿，特里什。

Hey, Trish.

我仔细阅读了她的出色研究，很高兴我们确实有了这样的基准。

I I had gone through her wonderful research, and it is great that that we do have, like, this benchmark as well.

从这里开始还有很多工作要做，因为归属感不仅仅关乎移民的视角。

We And there's like a lot of work needs to to be done from here because sense of belonging is not just only from a migrant perspective.

你是非常有技能的。

You are like highly skilled.

你的资格并不会直接帮你找到工作。

You don't get like a job as like your qualification.

你可能试图找房子，所有的生活成本体验都会影响这一点。

You you could try to get a house, all like cost of living experiences, all of that impacts it.

所以我认为，即使是内政部、支持这项研究的政府、市长和市议会，每个人都需要付出更多努力，帮助新移民更好地融入澳大利亚，给予他们机会，让他们更容易适应。

So I think what as like even home affairs who have supported the study or government or like mayor and city council, everyone needs to do do extra effect, extra work where they need to help and help like new immigrants properly assimilate into Australia, give them opportunities, and make it easier for for for them.

你提到生活成本这个概念非常有趣，因为在调查中，有一个人说：由于住房不稳定，我从不觉得这里像家。

It's so interesting you bring up this idea of cost of living because on the text line, one person says, due to housing security, I never feel at home here.

墨尔本是我的家乡，但我一直对自己的立足之地感到不安。

Melbourne is my hometown, but I'm in a constant state of insecurity about my place here.

就像你之前说的，赛德，生活成本的这些问题影响着所有澳大利亚人，无论是否移民。

Like you said before, Syed, these ideas of cost of living are affecting all Australians, migrant or not.