How far would you travel to a hospital? This week on the show, you’ll hear from three health leaders from the Pacific about the health challenges facing the region. We also look at the skill of interpreting and communicating fetal heart rates, and begin a conversation about endometriosis.

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Presenter/Producer: Ellen Leabeater
Producer: Jake Morcom

Speakers:
Michele Rumsey- Director of the World Health Organisation Collaborating Centre for Nursing, Midwifery and Health Development at UTS
Gordon – Nursing officer and visiting Solomon Islands delegate
Nancy – Dialysis Unit Nursing Manager and visiting Nauruan delegate
Tamali – Midwife and visiting Samoan delegate
Helen Cooke – Clinical Midwifery Consultant at NSW Pregnancy and Newborn Services Network
Sylvia Freedman – founder of EndoActive

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Ellen Leabeater: Hi, welcome to Think:Health. Ellen Leabeater with you. Today, how to interpret and communicate foetal heart rates. And, opening up about endometriosis.

Sylvia Freedman: …And it wasn’t until I actually went to seem my Mum’s gynaecologist that he actually started asking me all these questions about pain and he gave me a physical examination as well. And he said, “I think you have something called endometriosis,” which I’d never heard of.

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Ellen Leabeater: But first, how close are you to your nearest hospital. If you’re really unlucky, it’s probably a couple of hours away, and you can easily be transported by plane if need be. Now, imagine what life would be like if your nearest hospital was a few months away – by boat. This is one of the challenges facing healthcare in the Pacific Islands, where distances between islands can prevent timely access to medical services. Lack of resources and doctors and nurses also contribute to the health gap between Australia and our closest neighbours. The UTS World Health Organisation Collaborating Centre (UTS WHOCC) for Nursing, Midwifery and Health Development has been running for the last 8 years. The program has been up-skilling leaders from Pacific nations to improve health outcomes. A delegation has been in Sydney for the last two weeks and joined Think:Health to discuss the challenges for healthcare in the Pacific.

Michele Rumsey: Hello, my name’s Michele Rumsey. I’m the Director of the WHOCC for Nursing, Midwifery and Health Development at UTS.

Ellen Leabeater: Michele, can you tell me a little bit about this program you’ve been running.

Michele Rumsey: Yes I can. It’s a real honour to run this program. We’ve been a WHO Collaborating Centre since 2008, and a collaborating centre is a technical arm of WHO for the expertise you cover. The main reason we became a collaborating centre to assist them in their reliance is because the islands are small nations that are very divided with different topography…

Ellen Leabeater: What islands are we talking about here?

Michele Rumsey: We’re talking about Vanuatu, Solomon Islands, Samoa, Tokelau, Niue… There are 14 countries within our alliance, and for example, Papua New Guinea has between 7 and 10 million population and a topography that’s really tricky for people to cross from one end of the country to the other; Vanuatu has over 300 islands; Solomon Islands has 900 islands; and then we have very small communities like Tokelau, which has about 2000 people, so it’s a very varied dynamic group who want to work together, but their isolation makes it hard.

Ellen Leabeater: And this program is all about building leadership, as I understand.

Michele Rumsey: It is. It’s a leadership program, but the structure is… because it’s run through our leaders in the Pacific, they’re the mentors of the program, and for the majority of the time they work with our fellows and work out projects that would be useful to the country. Then there are several workbooks before they come here and discussions with our leaders in the Pacific. Then our colleagues come to UTS and run a two week program. But it doesn’t finish there. We keep in contact and we do follow-up visits to the country and communication, and that’s actually what we’re just discussing at the moment – how we can all keep together after this project is finished.

Ellen Leabeater: So let’s bring in some of those leaders.

Gordon: Hi, my name’s Gordon. I’m from the Solomon Islands. I’m a nursing office and I look after the nursing administration in one of the remote provinces in the Solomon Islands.

Nancy: Hello, my name is Nancy. I’m from Nauru. I work at the dialysis centre running the unit as a manager.

Tamali: Talofa (Hello). I’m Tamali. I’m from Samoa. I work in the maternity ward at Tapua Tamasese Mealoe Hospital – the main hospital in Samoa.

Ellen Leabeater: Gordon, I might start with you. What are some of the health challenges in the Solomon Islands?

Gordon: I think one of our huge challenges is human resources. You might understand that in the Solomon Islands, with the current growth in population, we still have the same number of nurses in the workforce, so in order to reach out and to provide healthcare services to remote and rural people, it’s a real challenge because we don’t have the capacity to provide that care because there are not enough nurses.

Ellen Leabeater: What’s the population of the Solomon Islands?

Gordon: Currently approximately 600,000 people.

Ellen Leabeater: Spread across 900 islands.

Gordon: Exactly.

Ellen Leabeater: What happens for someone on a remote island? Where do they go when they need to go to hospital? Is there one main hospital or are they scattered across all these islands?

Gordon: I think those who can access road infrastructure are lucky, but for the majority – more than 80% of the communities – they can only access by boat. It all depends on the boat. For some of our communities or islands, the boat can reach them after two or three months.

Ellen Leabeater: When you talk about increasing that nursing workforce, do you see the nursing workforce increasing on those individual islands or in main areas where there are hospitals?

Gordon: That’s a really big challenge as well in terms of trying to motivate nurses to go and work out in the remote places. I think one of the influencing things is nurses want to work in urban centres, so it’s really a challenge for us to find ways to make a fair distribution for all our nurses into remote places. I think we’re making our way, but it’s not easy.

Ellen Leabeater: Nancy, what about Nauru? What are some of the health challenges on Nauru?

Nancy: Some of the health issues will be limited resources; staffing shortages; and then the primary healthcare problem of diabetes.

Ellen Leabeater: You also said resources are an issue. On Nauru, you’ve got one hospital. What resources does that hospital have, and what would you like it to have?

Nancy: Well, people, funding, equipment and also time.

Ellen Leabeater: So you also don’t have enough nurses and doctors on Nauru?

Nancy: Yeah. Back home we’re running the dialysis unit, but we don’t have the necessary doctor.

Ellen Leabeater: So it’s just nurses running that unit?

Nancy: Yes, that’s right.

Ellen Leabeater: So your expertise only goes so far, I imagine. You need that doctor for the difficult cases.

Nancy: Yes, well in emergency cases, we refer the patient to a medical doctor or to someone who can handle the problem.

Ellen Leabeater: Tamali, tell me about Samoa. What’s the geography of Samoa like?

Tamali: Samoa’s population is 180,000. We have two big islands: Upolu and Savai’i; and two smaller islands: Apolima and Manono.

Ellen Leabeater: You work in the maternity centre. How many babies do you have each year?

Tamali: More than 3000 babies a year, and there are only 17 midwives for the maternity ward.

Ellen Leabeater: So you have the staffing issue as well. You could definitely use more midwives.

Tamali: Yes, we have limited resources as well. There’s shortages with staffing in the Pacific Islands with nurses and midwives. We also have a lack of equipment. We need things like incubators and baby cots – all the things we need for patient care.

Ellen Leabeater: I’m going to open this up: What have you learnt in the last two weeks from being here in Sydney?

Gordon: For me, I think I’ve learnt a lot, but the one thing that strikes me throughout the week is networking. I understand that I should be part of a team in seeking assistance, sharing knowledge, findings, seeking materials… And in terms of sharing knowledge, looking up and investigating journals regarding nursing is really important. This is something I learnt, and I need to go back and also implement findings from research in my small hospital.

Ellen Leabeater: So networking and teamwork. Nancy, what are your take-aways?

Nancy: Yes, thank you. This program is really powerful. For the past two weeks I’ve learnt a lot, mostly regarding leaders or managers. I’ve learnt about teamwork, networking, motivation, planning, actions, developing plans… and it’s strengthened my skills. I really want to go back home and do it right now.

Ellen Leabeater: And finally, Tamali?

Tamali: I’ve learnt a lot from a variety of programs. I have more knowledge and I feel loaded with skills to go and share with my colleagues at home.

Ellen Leabeater: Midwife Tamali ending that story. If you’d like to find out more, visit 2ser.com/thinkhealth.

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Female: You’re listening to Think:Health on 2ser 107.3.

Ellen Leabeater: Communication among staff members in hospitals is vital no matter the procedure. But what happens if you were speaking a different language to your colleagues. This is a challenge facing midwives and obstetricians when interpreting foetal heart rates using a CTG machine. Foetal heart rate monitoring is a screening tool usually used during labour to see if a baby is distressed. Clinicians have different definitions for different changes in a baby’s heart rate, which understandably causes confusion. Helen Cooke is a clinical midwifery consultant at NSW Pregnancy and Newborn Services Network who has implemented a training program to get clinicians speaking the same language when interpreting foetal heart rates.

Helen Cooke: So foetal heart rate monitoring is the process of monitoring the baby’s heart rate throughout pregnancy. It’s done as a special type of screening test both antenatally and during labour. We use a machine called a cardiotocograph or a CTG machine.

Ellen Leabeater: So foetal heart rate monitoring – how does that differ from say, using a Doppler?

Helen Cooke: It differs because the CTG machine produces a graph paper that allows you to look at how the baby’s heart rate responds to contractions and maternal movement or foetal movement. The CTG plots the baby’s heart rate on a graph. It measures variability in the baseline – so how much it changes minute-to-minute – and it also measures whether it accelerates with a baby’s movement or whether it decelerates with a contraction.

Ellen Leabeater: So in labour, do you use it on all women or just some women?

Helen Cooke: It’s used specifically on women with complex pregnancy – so when there are risk factors. I guess the aim of using a CTG is to support women with complex pregnancies to achieve a normal birth. So if we detect women that’s happened during labour that might influence foetal wellbeing in utero, then we use the CTG to get an idea of how the baby is going.

Ellen Leabeater: Are clinicians trained in using the CTG machine?

Helen Cooke: In actual application of it: yes. But interpreting the pattern takes a bit of skill, and over the years there have been multiple guidelines about how to interpret. We still haven’t got it right, and every ten years somebody releases another guideline and changes the language that we use around how we review the foetal heart rate pattern. So they keep changing the language. So our communication around the foetal heart rate features have varied over the years.

Ellen Leabeater: So that’s interpreting the graph that comes out of the CTG?

Helen Cooke: Yeah.

Ellen Leabeater: Is that a case of new research coming through that changes the guidelines?

Helen Cooke: Kind of… I’m not sure why it changes all the time, but it seems to. It seems like somebody thinks this is the better definition, particularly around how the baby’s heart rate responds during labour. So normally after a contraction or during a contraction, the baby’s heart rate will decelerate. And that’s a normal kind of response because there’s a change in the oxygen flow through the placenta while the contraction is happening. So the baby’s heart responds in a normal sort of way to how that’s happening. But they have different names as to what they think effects that oxygen supply and blood flow through to the placenta. So they could be called late-decelerations because they happen at the end of the contraction or early because they happen at the beginning of the contraction; or they could be called variables because they happen at different times, probably due to cord occlusions rather than uterine blood flow. So they have different names, and there could be a combination of what’s cord and what’s uterus and what’s causing the deceleration, and then they give that a different name. So it’s a bit confusing for clinicians.

Ellen Leabeater: Is that confusing because if you go from one hospital or maternity unit to another it’s different?

Helen Cooke: It’s confusing across countries I think. There have been American guidelines, English guidelines, Australia’s own set of guidelines… everybody uses a different terminology for what’s described as a very similar type of deceleration. And so, people use mixed terms. Part of my research was to look at the different language we use around foetal heart rate monitoring. For one deceleration I found 33 different terminologies used, which just shows the confusion that’s out there. Part of my education and my research was to try and get people speaking the same language so we improved our communication with each other.

Ellen Leabeater: So you’re saying that obstetricians and midwives don’t feel confident in teaching…

Helen Cooke: So they use the CTG all the time and they interpret it, but before we did the education, the midwives weren’t sure… if they were escalating to an obstetrician, they weren’t actually sure that they were using the right language, so they kind of “um-ed and ah-ed” around it. Whereas now, they can go, “I want you to come and see Mrs Jones. She’s got a pathological foetal heart rate pattern.” And that’s enough to get somebody to come and check it properly.

Ellen Leabeater: So tell me Helen a little bit about this research that you did. You developed a program called FONT. What was that?

Helen Cooke: So, FONT was a education program developed by NSW Health to try and teach our clinicians about foetal heart rate monitoring and about the management of maternity emergencies.

Ellen Leabeater: So you got a whole bunch of clinicians in the room and started getting them to speak all the same languages?

Helen Cooke: So we trained about 240 trainers across the state – about 30 in each of what were then our area health services. So we did this education about 8 years ago and we trained 30 clinicians from each of the area health services to be trainers for FONT. And we developed up an education package that was the same for each of the state. So everybody was learning exactly the same material, but it was being delivered by a range of practitioners across the state. So midwives, general practitioners and obstetricians were all the teachers, and they were also the people sitting in the room learning. There was a lot of group work and discussion that we created hoping to improve teamwork and communication.

Ellen Leabeater: How did you decide… you mentioned the deceleration with 33 different terms. How did you decide which was the term to run with?

Helen Cooke: We used a guideline. In NSW, we were using the English guideline developed in the UK by the Royal College of Obstetrics and Gynaecologists. We used their guidelines as the base, so the clinicians of NSW decided that that was the guideline they wanted to use and we used those definitions as the base for the education.

Ellen Leabeater: This was eight years ago. Do we know if this training has had an impact to improve this communication?

Helen Cooke: Well, certainly my research showed that our clinicians learnt a lot. So we know that they changed to be using the one terminology. We had an improvement of something like 95% in using the right terminology to describe the foetal heart rate pattern. So, the aim of that was to ensure that we all understood what was being said if somebody used the right terminology. So, we definitely showed an improvement in people’s knowledge around foetal heart rate pattern interpretation. We showed some difference with clinical outcomes, but it’s hard to associate that with the actual education. As a state-wide program, there are 100,000 births a year across NSW – it was very hard to measure whether we’d directly improved clinical outcomes. I have been able to show a change in outcomes across the state, but being able to directly link them to the education has been difficult.

Ellen Leabeater: Are you saying that the poor communication and interpretation of CTG meant that babies were dying or being injured?

Helen Cooke: Probably, yes. There certainly were a number of adverse events that we were able to describe before we did the education. When I looked at trying to show clinical outcomes, I looked at a database that we used in our neonatal intensive care units, and I looked at a group of term babies that were born spontaneously –born vaginally – where there was an admission outcome into the nursery of foetal distress, which is what we find with the foetal heart rate patterns. And I looked at those babies before we did the education program and across the state there were 34 babies that died over a period of 4 years. So there are not a lot of babies that die. But what we showed after the education is we only had 24 dead babies in that subgroup. So it was only a change of ten babies, and across 100,000 births, it doesn’t mean much, but I’m sure it means a lot to those ten women who are holding their babies today, and it’s certainly a reduction of 30% in the number of babies that died. But statistically, I can’t prove that we made a difference.

Ellen Leabeater: Helen Cooke, clinical midwifery consultant at NSW Pregnancy and Newborn Services Network.

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Ellen Leabeater: You’re listening to Think:Health on 2ser 107.3. Online at 2ser.com or on your favourite podcast app.

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Ellen Leabeater: Living with chronic pain is hard, but it’s even harder when you don’t know what’s causing it. Sylvia Freedman was 21 before she found out her chronic pain was due to endometriosis, a disease that attacks the female reproductive organs, often leading to infertility. According to Endometriosis Australia, it affects 1 in 10 women, and yet there is no cure, with some doctors recommending pregnancy as the only option. To try and change this, Sylvia has developed EndoActive with her Mum, an organisation trying to start a conversation with the nation about endometriosis. Jake Morcom spoke to Sylvia Freedman about her journey.

Sylvia Freedman: In the beginning my symptom was just period pain, right? So that was when I was really young, and you’re told period pain is normal. So you cruise through years and years of getting your period and having it be really painful, but that’s “normal” or “part of being a woman” – that kind of stuff. And then, it wasn’t until I was older – like in my early 20s – that I started to get the other symptoms: irregular bleeding, spotting… For some girls, they’ll bleed heavily for weeks and not tell anyone. They’ll just think, “Oh, I guess this is something I just have to deal with.” We’re never told that all these things are abnormal, which is terrible. And then the migraines, the sinus problems, digestive disorders… it got to the point when anything I ate or drank would give me such an upset stomach. What else? Chronic UTIs… I could be walking to work and be fine one minute, and then by the time I arrived, I’d be in so much pain, I’d need to go to the hospital and get on antibiotics. And then, with all these random ailments that you’re constantly sick with, it starts to make you… if you don’t know what’s going on and you don’t have a diagnosis, it starts to seem like you’re just a flaky person, you know?

Jake Morcom: How did that move into life at university?

Sylvia Freedman: When I was here at UTS, I was in the end barely making it to any of my classes. I was either too sick or too tired. Pelvic pain is a funny one, because when I was in my 20s I was on the pill, and because I would get such painful periods, I would just skip my period. So I’d continue to take the hormonal pills right throughout, but I was still getting this terrible pain in my lower abdomen, but it was this pelvic pain. I didn’t have the language for that back then. So I was thinking, “Well, it’s not period pain, because I don’t have my period – I’m just in all this pain.” And it wasn’t until I actually went to seem my Mum’s gynaecologist about getting chronic UTIs that he actually started asking me all these questions about pain, and he gave me a physical examination as well. And he said, “I think you have something called endometriosis,” which I’d never heard of. I had no idea what it was. So, I was booked in for surgery a couple of months later.

Jake Morcom: Why did you go in for surgery?

Sylvia Freedman: So, in order to formally diagnose Endo, you need to have a laparoscopy, which is keyhole surgery in a couple of places around your belly button and lower abdomen. They kind of look around, and if the endometriosis is there, then they’ll excise it in the surgery.

Jake Morcom: What does that exactly do?

Sylvia Freedman: So, a lot of the time Endo inside kind of looks like cobwebs sticking your organs together, and that’s obviously what can cause pain, because things are pushed and pulled where they shouldn’t be. Sometimes it can look like confetti – this stuff sprinkled all over – but it gets excised during the surgery, and it needs to be removed properly in order to not grow back. So if there’s even a little bit left, it’s no good because you’ll probably find yourself in pain still and needing another surgery quite soon.

Jake Morcom: Right, so is it curable?

Sylvia Freedman: There’s no cure for endometriosis, no. But there is a lot of different ways you can treat and manage it.

Jake Morcom: What are some of those ways?

Sylvia Freedman: In my Mum’s research, she found out about a medicine called Visanne, which is being used to treat endometriosis in some countries overseas, but not in Australia.

Jake Morcom: What exactly is it?

Sylvia Freedman: So, it’s a pill that you take daily, but the main ingredient is dienogist, and it doesn’t contain oestrogen and other hormones that the oral contraceptive pill usually does contain. So, it actually works to reduce the size of the legions from endometriosis, which other medications just don’t achieve. Anyway, in her research, she found out this was happening overseas and having really good results. She wondered why it wasn’t available to us here.

Jake Morcom: And why wasn’t it available her?

Sylvia Freedman: It came down to marketing and money really. I mean, Australia is really far away and we have a lot less people than other countries, and while we weren’t told that explicitly, it basically did come down to a lack of demand for the medication. We didn’t agree with this obviously. If Endo affects 1 in 10 women, you’d think that there would be a high demand. That’s 10% of the female population that possibly has endometriosis, or potentially more. So why shouldn’t we have that medication available to us here? So that’s why we started a petition on Change.org and we just didn’t expect it to go as mad as it did. It ended up getting 74,500 signatures and about 19,500 comments, mostly from women with Endo who’d been suffering and didn’t feel they had anyone to talk to. Some of them didn’t even know that others had endometriosis. This was like a light bulb moment where they were like, “Oh my god, someone else is experiencing what I’m experiencing. I thought I was the only one.” That’s how little it’s spoken about.

Jake Morcom: How does that make you feel? That you’re connecting other people to something they might not have heard before from a medical profession?

Sylvia Freedman: It’s a great feeling. Anytime that I can make one other girl feel less alone, is the best feeling, really. That was the whole point of starting EndoActive – because we had so many comments like that on the petition –19,500 of them. We really felt obligated to give those people somewhere else to go where they could continue to talk and continue to connect and feel less isolated after the life of the petition was over. And that’s why I thought, we should quickly start a Facebook page and call ourselves something and start bringing people together, so that when this petition is finished, they’re not just lost. You know, we needed something that we could continue.

Ellen Leabeater: Jake Morcom, speaking to Sylvia Freedman, the founder of EndoActive. If you’d like to hear more from that conversation, visit 2ser.com/thechat, or search for “The Chat” on your favourite podcast app.

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Ellen Leabeater: If you’d like to find out more about anything you’ve heard today, head to 2ser.com/thinkhealth. If you’ve enjoyed today’s show, make sure you subscribe so you won’t miss a moment. And if you have any questions, go and see your GP. Think:Health is produced with the support of the University of Technology Sydney and 2ser. I’m Ellen Leabeater, thanks for your company.

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