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00:00:01
S2: E5: The Silence of Scans: Why the Healthcare System Fails Women After Pregnancy Loss
44 Plays4 hours ago
In this crucial episode, our hosts are joined by Pink Elephants Service Delivery Manager Sophie Porter to dissect the traumatic reality of the "silence of scans" and the broken models of care for early pregnancy loss, drawing on both her research and lived experience.
Sophie shares that literature and community stories clearly show that when women's needs are unmet at the point of care, their grief is compounded, often leading to long-term anxiety, depression, and PTSD. The current system frequently routes women to Emergency Departments, forcing them to wait for hours—often next to patients with minor injuries—because their loss is classified as "non-urgent." This experience strips them of dignity and is exacerbated by a lack of sensitive communication.
The "profound silence" often begins during the scan, where the sonographer’s blank face delivers the devastating news without words. This silence reverberates, leaving women to advocate for themselves in a system that fails to meet their basic needs. This deficient care is not limited to public hospitals; it is also reported in fertility clinics and is particularly severe in rural and remote settings, where a lack of services strips women of autonomy and may expose them to inappropriate settings like maternity wards.
Sophie and the host agree that the issue is systemic—a failure of public health to unite physical and mental well-being—and is no longer acceptable. The urgent change needed is the implementation of new policy guidelines and comprehensive, mandated training in sensitive communication for all health professionals, from receptionists to GPs. The status quo is not good enough.
EARLY PREGNANCY LOSS SUPPORT
If you or someone you know has experienced miscarriage or early pregnancy loss, please know you are not alone.
- For crisis support, please call Lifeline - 13 11 14.
- Access all our support
- Connect through Live Chat with Peer Support
- Join Online Communities
- Call out Pregnancy Loss helpline delivered by PANDA
- Join the Circle of support
- Follow @pinkelephantssupport on Instagram.
STACEY JUNE LEWIS
You can follow our host Stacey on her personal Instagram account where she shares some of her lived experience.
Pink Elephants thanks the Australian Government for their support in funding this podcast series under the Miscarriage Support grant.
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Transcript
Introduction to Pink Elephant Support Network
00:00:04
Speaker
Welcome to the miscarriage rebellion. I am Stacey June Lewis, lead of the Pink Elephant Support Network group counseling program, Grief and Grace. And along with Pink Elephant's co-founder and CEO, Sam Payne, through this podcast, we will share the stories of many Australians who have lost their babies to early pregnancy loss.
Unpacking Stigma and Support for Early Pregnancy Loss
00:00:21
Speaker
With evidence and empathy, we unpack the shame, blame and stigma and lack of support that they may face. This is a loss that has been silenced for far too long and we deserve better. We are here to normalise the conversation and to make lasting change.
Challenges in Current Care Models
00:00:37
Speaker
In this critical episode, we're joined by Pink Elephant Service Delivery Manager, Sophie Porter, to dissect the traumatic reality of the silence of scans and our broken models of care from early pregnancy loss.
00:00:50
Speaker
Sophie shares how the current system compounds grief, routing women to emergency departments where their loss is classified as non-urgent, leaving them isolated and at times stripped of dignity.
Critique of Medical System's Care for Pregnancy Loss
00:01:01
Speaker
We discuss how the deficient care from the sonographer's blank face to a lack of sensitive communication across the board is truly a systematic public health failure. The urgent need,
00:01:13
Speaker
Mandated training for all health professionals to ensure policy guidelines become compassionate reality. This is a really important lesson. I hope you enjoy. On today's podcast, we have the incredible Sophie Porter with us.
00:01:28
Speaker
I am
Sophie's Personal and Professional Journey
00:01:29
Speaker
really proud to bring a member of the Pink Elephants team. Sophie is our service delivery manager. and has many years of expertise in the space of early pregnancy loss from lived experience to our own research.
00:01:41
Speaker
And we're really going to delve into a topic that can be quite difficult today. So think about yourselves, if you are listening to today, whether this is the topic for you. But we're going to talk about the silence of scams and we're going to talk about what great care in hospital setting looks like and what the worst of care might look like.
00:01:59
Speaker
Thanks Sam. um I'm really blessed to be working with Pink Elephants. um A little bit about what I was doing beforehand. um I have an undergrad in public care or health promotion and a background and a master's in public health. And so I've worked in not-for-profits, I've worked in um private sector and I've worked in universities probably mainly universities for the last five to 10 years.
00:02:25
Speaker
And that's
Emotional Impact of Sonographer's Silence
00:02:26
Speaker
been in teaching, but also um in in working with teams to help people through the university experience. um And yeah, I'm just really pleased to be here. Like you said, I've had and a lot of lived experience with pregnancy loss, ah but also delve quite deep into it in my latest research that I did as a part of my clinical research degree.
00:02:51
Speaker
I just remember being so excited when Sophie approached me on LinkedIn and she saw that we had a job advert up for a service delivery manager and I thought wow she wants to work with us at Pink Elephants how incredible to bring both this like depth of expertise which we'll get into now as well but also just you as a person because we'd connected before and I'm just really grateful that you're here and you're part of our team.
00:03:16
Speaker
um But i guess we'll go yeah into the
Grief and Mental Health Post-Pregnancy Loss
00:03:19
Speaker
topic now. I mean, if we really open up this idea of the wording silence of scans, and I mean that statement is so powerful, um I think it can also really deliver a lot of questions if you're not a person that's experienced that.
00:03:35
Speaker
um And I think as we've we've spoken about on the podcast so much, there's so many different experiences in something you know that could be looked upon as um the same situation you know on the outside.
00:03:46
Speaker
Yeah. Yeah, so let's go straight into this concept of the silence of scans. Such a massive statement. And I think even if everybody feels like they have had quite a strong experience, negative or positive, but we are talking about more of the negative today, they will look really different across the board.
00:04:03
Speaker
What does the research suggest in what you found in terms of the effects of of scans and and really, I suppose, the depths of emotion and anxiety, I suppose, that can bring bring for women and and couples going through this.
00:04:17
Speaker
Yeah, definitely. um Well, there is quite a lot of research um around women's experiences of early pregnancy loss. um we We do need to unpack that more um and find out the nuances because, as you said, um it's we're talking about early pregnancy loss, but each individual has their own individualised journey.
00:04:38
Speaker
I know the word journey, but um their own experience. And they may have had multiple losses and each one of those may be very different. um And so what the literature does tell us is that, um yes, it's a time of grief, not for all women who who lose a lose a pregnancy or lose a baby, um but for many of us um who who experience pregnancy loss.
00:05:02
Speaker
there is a lot of grief. um And I know, Stacey, you've spoken a lot about grief is a normal it's a normal part of being human, right, is to experience grief. and um But when a woman is going through either symptoms of early pregnancy loss or has had an early pregnancy loss, um that that grief is there, but it can become more long-term.
Inadequate Emergency Care and Its Impact
00:05:29
Speaker
I guess. And so then where we that's where we see mental health decline further and we see a lot of anxiety, depression and sort long-term PTSD or post-traumatic stress disorder.
00:05:45
Speaker
um And what happens early in the in the in the very early stages of women seeking care is that there's
00:05:59
Speaker
they're not necessarily getting the care that they need. So their needs aren't being met. And like we said before, every individual is different. So everybody's individual needs are going to be different. But on the whole, we're not doing a good enough job to support these women at point of care. so um from my own lived experience, from what I hear um from the women who access our services at Pink Elephants, what I hear in the general community, but then what also i read a lot about in the research and the literature um was that we're,
00:06:32
Speaker
at point of care, if those needs aren't being met, that grief and um those feelings are exacerbated, those negative feelings are exacerbated. um And so it's already a very um emotional time, um but and not receiving or not having their needs met is really compounding the grief.
00:06:56
Speaker
And so, um and I just, I wish we didn't hear so many stories. yeah Um, and it's the same stories. It's the same stories we're seeing on our Facebook communities. We're seeing, i'm I'm reading in the literature from the women who have participated in studies and then I'm seeing the exact same thing play out on Facebook.
00:07:19
Speaker
yeah Um, and through the live chat and through the call line, um, it's the same stories over and over. And I just think, what is going on here? And so that was one of the reasons why i wanted to take my experience um and turn it into something positive.
00:07:38
Speaker
um That tends to be my yeah ah the way I do life, is that to have an experience that may not have been a desirable one, yeah but then try and turn it into something positive. And so I wanted some, one, I wanted some answers. I wanted,
00:07:53
Speaker
and I wanted other women not to have to go through what I went through. um And that's why i decided to hit the books. I don't really know how to leave university.
00:08:06
Speaker
I'm an eternal student. um But, yeah, I really wanted to find out why and try and do my bit to address
Challenges in Rural Healthcare Access
00:08:18
Speaker
that gap.
00:08:18
Speaker
and And so when you started to address it, what did it look like? so you started to find out more about people's experience off the back of you experiencing your own.
00:08:30
Speaker
Where have you landed in what people need from the finding? So we um women obviously attend multiple different clinical settings um with symptoms of miscarriage but or early pregnancy loss, but um one of the most common places that women attend is the emergency department.
00:08:51
Speaker
um And that's for many different reasons. um It might be because they're not at a point where they've seen a GP or they've got an obstetrician and so and they've had no scans or no appointments and they've started bleeding and they're in pain and that's perhaps why they present.
00:09:09
Speaker
It might be... Can I interject on that for one second? Yeah, please. Because I think we need to then also really use this as an example to scope, to really kind of hone out and look at what the women's experience is as a non-pregnant person for a second, right?
00:09:22
Speaker
So you might have been experiencing pregnancy for the first time, just found out, not even sure if you go to a GP. Yeah, exactly. What do you do? What do you do? So aren't even, you know, we do assume that a lot of the time in this space people are trying.
00:09:35
Speaker
And maybe going through fertility treatment. But there are a lot of people that are experiencing this for the first time, being pregnant, not knowing where you would go even if you were to get to your 10 weeks. or So there's all this, um you know, this kind of vulnerability in this experience that is separate to the loss. Absolutely. I'm so glad you called that out.
00:09:56
Speaker
And for women who live um rurally and regionate regionally even more so um and those who are even more remote, um that that becomes even more complex. Yeah, feel that they don't get kind of a quality of care when they walk into it, yeah like you know.
00:10:12
Speaker
But if you imagine, um i'm assuming most people have been to an emergency department at some point in their life, it's not a pleasant place to like to be, regardless of what you're there for, right?
00:10:22
Speaker
um And so we know that women are sitting there next to experiencing potentially the loss of their baby. um which brings with it not just loss of the baby, but hopes, dreams, you know, the things that you maybe have may have already bought um or um things you have told family, etc., friends.
00:10:45
Speaker
um But they're sitting there and in pain, bleeding, not knowing what's going on, not having answers. yeah And they're sitting next to someone with a broken arm um or a graze on their leg.
00:10:58
Speaker
So we know that women um tell us that that's just not okay. There's no dignity, right? There's no dignity. There's no... um No one checks on you either.
00:11:13
Speaker
um And so you're sitting in a really uncomfortable place that's really loud, that's overwhelming, um but um and potentially waiting three or four hours because...
Communication Gaps in Healthcare Settings
00:11:24
Speaker
Because it's just a miscarriage from the perspective of medical management, right? That's right. And the way that the literature talks about it is that um if a woman is um ah physically stable...
00:11:39
Speaker
hemodynamically stable is the is the term, I think, um so if yeah yeah um then you know they need to wait because they're not seen. It's not an urgent, it's not a life-threatening condition, yeah right?
00:11:55
Speaker
Unless it's potentially an ectopic. So if they have seen that there's a pregnancy in the uterus, then it becomes essentially non-urgent because they brought out ectopic pregnancy right um so that's ed so they're sitting waiting in an uncomfortable room we've got we know um women may be going for their first scan or their second scan or their third scan and the blank looks on a sonographer's face yeah you never forget that right and you're waiting and you're looking at the screen and it's you know the big screen that's in front of you.
00:12:29
Speaker
um And silence. It's complete. And then it continues to be silent from then on in. And you're just like, please, please, someone say something. Please let me hear that heartbeat. Please and it tell me. it sets up a tone for the way that then I think you continue to expect people to be.
00:12:47
Speaker
So if the person that you've gone to vulnerably to tell you information about your body and your baby can't find the words, then why would you expect other people to give you the appropriate treatment? So we're also now moving into a space, and I work with this um in my clinic, in that we have to almost kind of end up rebuilding the woman to be able to feel confident to advocate for themselves because from the very beginning a lot of the time,
00:13:13
Speaker
They weren't even given words. yeah yeah That profound silence starts there, the moment of the scan for many women in this experience where, like we've all just acknowledged from our own lived experience as well.
00:13:25
Speaker
It is profound. no other word for it. But then it reverberates, right, throughout the rest of the experience to your point of people not being able to know what to say. So then you're met with a deafening silence. And you accept it.
00:13:36
Speaker
Yeah. And and then you're just going to go out and pay your bill. Oh, yeah. For some. Yeah, it's gotten better. The last few I had, they said
Anxiety in Subsequent Pregnancies
00:13:46
Speaker
you can go around the back entrance and you won't charge you. Okay, that's much better. But I had to end up paying privately to go to this specific person because I had had subsequent losses and already knew... that I needed to find someone that was prepared.
00:13:59
Speaker
Like I had to scope that treatment out. You know, we've we learned in the area that there was one particular scanning place, not near my home, yeah that I travelled to to go to to keep a safety in that experience because I'd already had reoccurring loss. I have been to every SCUM clinic.
00:14:17
Speaker
incidentally i reckon because each one is tied to a different kind of experience and emotion negative or positive you don't want to have to go back and i can't like there's too much fear and even the positive experiences for me where there was a fear of if i go back there with this pregnancy i'm jinxing it because it works out that long so i can't like the complexity what we start to think in our own heads the rumination of the scan experience, it's massive. And then you've got pregnancy after loss, scan anxiety. Like we don't talk about that enough, right? either like
00:14:49
Speaker
What do you see from our communities of women who are pregnant after loss, particularly that community and like the comments and the questions in the lead scan? Yeah, so we have the Pregnancy After Loss so um online community Facebook group. um And it's just, it's full of images of pregnancy tests.
00:15:11
Speaker
I did it too. I don't know how much I spent every weekly shot on pregnancy tests, but these women are doing the same thing. It's not just my story. still got pregnancy I'm not even having any more kids. like No, not in a box.
00:15:25
Speaker
But even new ones. New ones. forget the ones that I peed on. Yeah, I've got those but I've also got ones that I can't throw. It's it's a bizarre relationship. And when you get the marker and youre you're putting the date on all the markers and you're leaving them in the bathroom so you can make sure the line still dark. Different light.
00:15:46
Speaker
And these women are posting those images. um
Rural Healthcare Disparities
00:15:49
Speaker
And then, you know, the the do one day I just wish I could go to the toilet without looking for blood.
00:15:58
Speaker
I still now look when I wipe. I do too. It's a habit. It becomes a habit. It took me a while. Yeah. it's it's So coming back to what what you found in the research around these particular experiences, what's tangible in you being able to say, yes, this does lead to?
00:16:23
Speaker
um There is literature that says if if we don't provide the care for these women, that they need that point of care and that ongoing care, so that referral afterwards, and they they're not involved in their choices, so they're not they're not making an informed choice, they're feeling like they should shouldn't.
00:16:49
Speaker
that's that's the best thing for the time or the best thing for the doctor or the best thing for their children, if they're not having that autonomy in their own choice of their management of their loss, um then we know that their mental health outcomes are much worse.
00:17:06
Speaker
Okay. And I want to acknowledge something there that I know as well, that we are diving more into the diversity experiences and one of the areas that we're really trying to unpack at the moment is the role and remote experience. And unfortunately,
00:17:19
Speaker
those women really do lose that autonomy and choice because the providers that exist in rural and remote settings, for example, not every setting has an early pregnancy so assessment service.
00:17:30
Speaker
Definitely not. Most are just bundled into the hospital and then if they have a DNC, they find themselves waking up on maternity wards or they live hundreds of kilometers away from a healthcare setting. They may have had a DNC already.
00:17:42
Speaker
but then they have retained products, but they're not, and that I don't use the word product likely. Like, I mean, like it's horrific to say it that way, but they're at risk of obviously further complications and all sorts of different things and they need more medical support but they can't access it because they're so far remote and there isn't the services there then also you've got complications around if they chose to medically manage with the ms2 provision of access to that it's not equitable health care access within a rural and remote setting for women who go through an early pregnancy loss which then to your point sophie we link that to that research we're going to have higher numbers of women
00:18:22
Speaker
from those communities with poor mental health outcomes because their needs are not being met. these are basic And living in isolated areas too with limited support
Resource Gaps in Early Pregnancy Assessment Services
00:18:31
Speaker
networks. I mean, there is some research around pregnancy loss in rural remote areas, but not very much at all. yeah um And ah the the local GP may well be...
00:18:42
Speaker
the GP that goes to the hospital as well. So that's the doctor in the hospital too. So not a um not a surgeon, not a gynecologist. And so like you say, they then have to travel. And um so when I was going through my losses, um i wasn't really I wasn't really aware of early pregnancy assessment services then. I don't know if they existed then. ah I don't think they did. Or if they did, they weren't in the state that I live in.
00:19:07
Speaker
um And I can imagine even ah what it's like as a rural remote women woman um trying to access services. So what we also see on our online communities is that women are booked into these clinics, um which is they're a great, amazing service, but they're so under-resourced, just like the emergency department.
00:19:30
Speaker
just like the public healthcare system. um And they get their appointment and they may have started bleeding on the Thursday, they may have gone to ED, they may have been discharged and told to go to an early pregnancy assessment service and they go through that whole weekend and by the time they get there, their loss is completed.
00:19:53
Speaker
um And so- With no guidance. and With no guidance, and alone in pain. Right. And I think it's also an important point. I had a really wonderful experience at a very metro city hospital um here in Sydney, actually, an incredible experience for my first loss, which gave me um autonomy of my own choices. i could choose whether I wanted to see if it came naturally. If not, I had almost like an access to the actual one person that managed that. So I had a personable relationship with her.
00:20:23
Speaker
Their wait list was like quick if I needed to say, which I did, I was like, right, i can't wait anymore. i need this to be done tomorrow. That it isn't just about regional hospitals and, you know, people that might not be equipped for miscarriage.
00:20:36
Speaker
These experiences can happen in fertility clinics. Absolutely. And it happens. It does. Commonly in fertility clinics of people that are paid... to specialize in this game. And I think sometimes for many women that I see in my private practice and in our groups that it can sting even harder because not only now are you a paying customer, yeah you are working with specialized health staff who still continue to really neglect certain needs around this experience and and i don't think it's i don't think it's um it's not on purpose it's absolutely not on purpose it's not from place of malice absolutely not it's from lack of training it's from compassion fatigue it's from lack of understanding lack of yeah in some circumstances definitely lack of understanding um lack of resources
00:21:33
Speaker
Um, maybe not so much in private clinics, but I still think, you know, there's still a pressure there.
Healthcare System's Role in Grief Exacerbation
00:21:38
Speaker
Um, particularly in, in, in public systems, um, that, that, that and we're talking in my research as in emergency departments, they're so under resourced as it is.
00:21:49
Speaker
Um, they're already being asked to be all things to everybody. Um, so yes, it's really, it is, um, And I had an amazing emergency doctor working with me on my research and she helped and to keep me on track and be realistic because um i would say, oh, I'd get so frustrated saying, but why is this happening? why is this experience? She said, well, we have to be everything to everyone.
00:22:16
Speaker
in that environment. And so, yes, it's not good enough, but it's it's a system problem. It is. I agree that it's a system problem, but I don't, I never accept the status its quo and that's who I am and that's why I've founded this organisation.
00:22:33
Speaker
And it's not good enough. It's not enough. And I'm going to keep saying it's not good enough very loudly because women and their partners deserve so much more. And when I said lack of understanding, it felt like that didn't resonate. And when I say lack of understanding, I mean that medical professionals might understand the medical management
Call for Empathetic Healthcare Practices
00:22:50
Speaker
of this. Oh, definitely. But I've had interviewed and spoke to many, say, for example, GPs, um amazing, incredible women that before their own experience of early pregnancy loss,
00:23:00
Speaker
did not understand the depths of this grief, did not understand the profound impact of these losses that we carry with us forever, for many of us.
00:23:11
Speaker
And it's until you've walked that path, I don't think they do understand how much this loss matters to me in that moment and how scared and terrified I am.
00:23:22
Speaker
sat in a waiting room full of other the people and you know what it's like in an e-pass waiting room like you've sat in the metropolitan ones as well there's probably 14 other couples because that's the maximum the same place i went for my ivf treatment yeah yeah you're still sitting in the same room sitting in the same room you yeah yeah but again the silence that's in that room no one talks to each other everyone's heads down there's a feeling of shame there's fear there's anxiety it's It's an awful experience and we need to do better. We need more for women. um And then when you start looking forward, like what can we change? Well, I think when Soph talks about the systematic, you know, issue at hand here, i think one of the other factors of that is is that we still see health as a physical experience. Yes, absolutely. And so, you know, what we are explaining here is emotional trauma, anxiety.
00:24:12
Speaker
um is the real seriousness of what's happening to our physicality then influencing the way that we mentally cope. yeah And so when we continue as a society to separate these two things, one is health and one is mental health,
00:24:28
Speaker
we continue to find this problem where we're talking about an experience that is looked as reductive but also feminine. Yes. um Even if men are experiencing emotional health, it's still deemed as more of a feminine expression.
00:24:42
Speaker
And so we know medical misogyny, we covered it quite um thoroughly in Season 1. And so really, you know, I do believe that moving forward um from a systematic perspective,
00:24:54
Speaker
There does, as I think what you were getting to, require a lens that is specific to this particular experience and particularly driven by women.
00:25:05
Speaker
And I think we continue to find that across the board in all areas of medicine, that it's driven by mit And I don't say that to be, you know, just kind of a status quo equality thing. I say it because the way to treat this is to understand it and understand it from the lens of a very different structure that we're provided, which is mental is health yes and they come in together united.
00:25:32
Speaker
yeah We can't treat one without the other And i think when we say one in four pregnancies end in pregnancy loss, um To me, this is a public health
Advocacy for Policy Change in Healthcare
00:25:41
Speaker
issue. Well, it absolutely is. yeah And so when I say it's a system problem or it's systematic, I mean that the system is broken. Yes.
00:25:52
Speaker
Could not agree more. I mean that it's not funded enough. It's under-resourced. um I mean that... rural and remote areas, metropolitan hospitals, they all operate very differently.
00:26:05
Speaker
And so we need to not have a one size fits all approach. um Until now, we've had a real lack of guidelines. So again, we can't make any change with our policies.
00:26:21
Speaker
um policies are the only way public health policies are the only way we get anything done that is sustainable and i think you're both right i think it's a systematic issue and i also think it's not good enough particularly with the statistics they're there it's not like we might not have as much research as the vasectomy but there is um there is research to show us now not just um pregnancy loss but we're also starting to see rising numbers as we know this is such a baseline conversation but it's worth noting of infertility you know so at the end of the day these things are connected they you know these experiences and the what the treatment of these things are very similar um so you know it's really going to require a very different approach yeah for this to kind of move into the direction that we we would all like to see absolutely and i agree that policy change is
00:27:08
Speaker
definitely an underpinning of systemic change, but it doesn't work alone either. it doesn't So we need to foster more empathy, understanding. We need more of us to share our experiences and call out what's not working for us.
00:27:21
Speaker
Because with more awareness, that drives policy change and then policy change and having guidelines in place then drives practical changes, like things like different waiting areas for women in hospital settings.
00:27:33
Speaker
Like I know we're going to speak to Professor Alex Heasel as well around their amazing experience for pregnancy after loss for women. for that extra level of TLC. All of it together is the change that we want to see.
00:27:45
Speaker
I now know nine years in that this is going to take years to happen, but we have to start somewhere. We have to be loud. We have to say what we need and we have to drive this change because if we don't,
00:27:58
Speaker
It's the status quo or accepted and the status quo isn't anywhere near good enough for the experience. And I think I want to add, which I often add on these episodes, and I say it a lot in our PEPS group, is that if you are going through this, you don't need to be that leader right now. Yes. you know we're talking to those of you that may have experienced this before that may have come out in a ah different place that feel like you know This is important for you to advocate for um you know women like you or yourself that continues to move through this.
00:28:27
Speaker
But particularly, we're talking to anybody that works in a space of health, you know that you might not have experienced this, but it is important for you to advocate for it. um because and for yeah patients that's right because together we need to kind of move through this but it is really important that we also note that um it isn't your job to educate everybody at the time of your processing um that can sometimes support you to move into that restorative you kind of move into this processing of i need to do i need to you know contribute and that can be really therapeutic for people
00:28:58
Speaker
But it it doesn't have to be you if that's not something that feels right for you today. I think it's because we sit here, yeah, coming on, you know, from a place of a different position moving through this. you know And our reactions are all different, right, well, like the way that we live.
00:29:14
Speaker
So I guess one of the things that we've just heard lot of the how awful it is, quite frankly, and and like you now have this deep understanding. What would you change? Where would you start? Yeah.
00:29:27
Speaker
I think um
Need for Training and Guidelines
00:29:28
Speaker
guidelines are definitely start and we've seen the new RANDSCOG guidelines come out. But we do need more guidance or health professionals need more guidance on how deliver sensitive and to have sensitive communication with women and their families and partners if they choose do And we need training.
00:29:50
Speaker
Mm-hmm. and we need training
00:29:55
Speaker
um And good training and training at all levels of um health delivery. Whoever touches this experience. Whoever touches this experience. So whether it's ED, whether it's, yeah yeah um yeah, receptionist, whether it's a sonographer, whether it's, you know, EPES should know what they're doing, and um but the local GP,
00:30:16
Speaker
the GP that's working or the nurses that are working in regional and remote areas, Aboriginal health um services as well. So um they would be my two my two picks um would be sensitive communication and training and training around sensitive communication, but also um adopting the clinical guidelines, but I really want to see guidelines include specifics around bereavement care and follow-up and referral.
00:30:48
Speaker
okay Yeah, I think referrals should be mandated. I'm done with over 60% of women not getting referrals for support. and they might not feel like they need it in that moment at that time. Well, everyone can throw a flyer out. Exactly. It's their choice throw it out. Can we let people know where to go? You know what mean? Yeah. Yeah, yeah, yeah. Everyone can throw it out. Something to take I mean, that's something that has come through in the literature that at that point of care where someone is asking for help because of the potential pregnancy loss at the time they're presenting for care, it's so overwhelming. Mm-hmm.
00:31:25
Speaker
this there' There's so many emotions, so many feelings, so much fear that they can often walk away, even if they are given a plan, even if they are they do go to a health service that is is trained, is um responsive to their needs.
00:31:39
Speaker
To then go away and have nothing and try and remember all the information is a real, it's realistic. you know that it's It's dangerous. Yeah.
00:31:50
Speaker
It's dangerous. And I think anecdotally I see... you know, women really continue to try and be the leader in this experience in their homes or their, you know, extended families.
00:32:03
Speaker
And it doesn't work, you know, that's how they end up in a one-on-one in front of me is because they've crumbled by trying to be the person to find that resource, by trying to send their mother-in-law the resource, you know. These are expectations that are breaking our women. Yeah.
00:32:21
Speaker
And so it is really important to also understand realistic expectations of someone's ability to um do the next step in these experiences.
Follow-up Care and Support Post-Loss
00:32:31
Speaker
It's just kind of unheard of when you compare to other diagnoses or, you know, another experience that has somebody walk out with a life changing diagnosis you you know there would be a follow-up there would be um a support team there would be a support group you could go to yeah um so to expect anything different when i i see this experience as being so uniquely devastating is um well it's malpractice in my in my opinion and if you think about like jumping on that theme what you just said but
00:33:03
Speaker
If you are given a cancer diagnosis within Australia, you then have the follow up with McGraw's an amazing charity that most people know it's a household name, but the cancer care nurses, right? and and they're there to walk you through every step of what's going to happen.
00:33:17
Speaker
And that support, that TLC, the difference that makes in the overall experience. And yet with early pregnancy loss, our babies die. We leave hospital through the very same exit that you would leave with a baby in your arms. You leave without your baby in your arms, past all the baby gift shops, past all the pregnant women, trigger, trigger, trigger, trigger.
00:33:41
Speaker
You go home, no one asks how you are. No health professional follows you up. Again, you have a live baby. You're given a six-week postpartum checkup by a GP. You lose a baby, your hormones do exactly the same things.
00:33:55
Speaker
We are not given six week postpartum checkup. We're still bleeding. We're still bleeding. We still have questions about when, what do people always ask? When's my next period going to come? What's normal? When can I try and again? Because they do want a baby their house. Is it normal to feel this way? All of these questions. And yet we are turning to social media and the internet to answer our questions.
00:34:16
Speaker
That is not good enough. know And I think we know now as well with those, you know, if we're relying, there's so much conversation around news and health and where people get it. And we are in a really poignant, sticky part of our society of how we receive information. So not only, you know, is it really irresponsible to expect people to have to go source that in those in that environment and that experience but now we don't know where they're going you know so hopefully they find us but they might not you know and so it also is really scary to think about if we can't give accurate safe healthy information about this
00:34:58
Speaker
what the effects are you know from those perspectives one one particular misinformation can lead someone down a very different road yes um so it's you know we really have to look at it from that kind of danger zone a little bit as well completely um but i think yeah it's it's it is a a bigger conversation and one that i you know i i have this lovely rosy kind of picture in my mind and a fertility clinic that um i went to in melbourne there It's kind of taken over by flowers and feminine
Vision for Compassionate Healthcare Environment
00:35:29
Speaker
furniture. And it's look, it's not my taste, I must say. It's over the top. But it felt like someone had thought about me when I walked in.
00:35:38
Speaker
And so I wonder if there is a world where we live in where someone goes into a room. that might have a pillow, some tissues, um you know, a bit of a warm blanket, um a hot water bottle, some information, some pads um and some information about what we do and what the next steps are for them, you know, a little tiny office room it can be like this room it's night yeah it could just be and where you are and a room where you don't have to wait with other pregnant women there's prayer rooms or newborns yeah that's right and and i think also as a way for the staff and you know to get a second to know when they walk into that space now they're thinking about the training that you would like to see sophie they're thinking about this emotional literature there's an energy shift with this experience because it requires it and it requires it not just because that would be
00:36:30
Speaker
complimentary and lovely but it requires it because the the you know the findings say that if we don't start looking at this differently we will continue to see mental health declines 100 so it you know that's the picture the rosy kind of lovely picture that i would like to continue to visualize yeah and what what we want to do is stop compounding this grief stop compounding stop making it harder Yeah, it doesn't to be hard.
00:36:58
Speaker
It's hard enough. Let's not make it harder. Today's episode may have brought up some feelings that you need some extra support around, and that's totally okay. Head to pinkhelephants.org.au to access our circle of support, your space where you can be met with empathy and support through all of your experiences of early pregnancy loss.
00:37:19
Speaker
We're here for you. You're not alone.