Two instances of embryos being transferred into the wrong patient under Monash IVF have left people feeling "distressed and unsettled".
That's according to fertility reproductive counsellor Narelle Dickinson, who says there is anxiety for past IVF users about whether they may have been exposed to lab errors, and also for prospective and current patients.
"IVF is stressful anyway. This is a really, really distressing set of events that has occurred," says Ms Dickinson, based in Brisbane/Meanjin.
She says with any medical procedure or treatment, people need to have "a lot of faith and confidence" in their treating team.
And while that may feel harder in the wake of the embryo mix-ups, there are ways patients undergoing fertility treatments can feel more in control.
'Come with a list of questions'
Manuela Toledo is a board member with the Fertility Society of Australia and New Zealand, medical director at TasIVF and a fertility specialist at Melbourne IVF.
She says many of her patients come in with a list of questions, which she encourages.
"Most patients are very well informed … and they understand that the IVF clinics, including the doctors, the nurses, the embryologists, the medical scientists … put our best foot forward and try our hardest every day.
"At the same time, we recognise there is a level of concern out there at the moment. And one way [for providers] to address that is by providing information about processes and what to expect when they come to clinic."
She says one of the most important first questions for people to ask their clinic is "Can you tell us why we have infertility?"
Even though one-third of infertility cases remain unexplained after thorough testing, Dr Toledo explains that asking this question ensures patients understand the investigative processes.
"It's very important to understand 'Why am I having this treatment?' and 'What treatment am I going to have?' and 'What is the likely outcome going to be for me?'," Dr Toledo says.
"Every journey is so individual."
Ms Dickinson says it's also reasonable for a patient to ask things like "Who is in the laboratory? Can I meet the staff who are taking care of me?"
If you need help brainstorming a list of questions, especially around the processes or science, Ms Dickinson recommends patients visit YourIVFSuccess, an independent resource funded by the Australian Government.
"It provides some good, high-level information and can be helpful to work out what you might need to know to ask your doctors questions."
Dr Toledo also recommends the Fertility Society of Australia and New Zealand website.
Do you feel your questions have been answered?
Patients should always feel they are in the driver's seat of their treatment, says Ms Dickinson.
"If they ever feel their questions are being dismissed or brushed off, that is a problem.
"They have every right to know what is happening in terms of the laboratory, the medications they are being prescribed, in terms of any treatment protocols."
Karin Hammarberg is an adjunct senior research fellow at Monash University and former IVF nurse.
She says people "should not give up [asking]" until they have the answers they need.
"The clinics will expect that more people will ask questions now. This has become a trust problem," she says.
"Sometimes you have to be pushy and difficult."
Dr Toledo says if you are still feeling unsure, seek a second opinion from a fertility specialist.
Looking for other green flags
There are other things patients can look out for at clinics when considering or undergoing fertility treatment.
"One thing you will notice when you walk into an IVF clinic, there is always a so-called three-point ID check," Dr Toledo says.
"[You are] asked your name, date of birth and address."
She says that is something that should be done "every step of the way".
While informed consent processes will vary clinic to clinic, Dr Toledo says a good example is one that includes verbal, written, and visual consenting, such as a "mini movie" showing the process of IVF.
"A lot of individuals are very visual, it's nice to see the information not just in verbal and written form, which is especially important to patients where English may not be their first language."
When it comes to consent forms, Dr Hammarberg says people should take the time to read them thoroughly before signing.
"It's not always in the most accessible language … [but] take it home and have a read. If you have questions, ask them."
Another green flag is staff capacity and wellbeing, says Ms Dickinson.
She recently co-authored a paper examining burnout in IVF nurses, and says it was clear that like any business, fertility clinics are susceptible to the impact of reduced staffing levels, or low staff wellbeing.
"When too much pressure is placed on employees, when they are tired, when they are stressed, when they're in distress, they are at risk of burnout.
"Unfortunately, these same factors increase the risk of human error in all areas of the fertility clinic."
Ms Dickinson says while you are "not necessarily going to ask if staffing levels are at accreditation standards", you might be able to tell if there are staff "who are not OK, or there just doesn't seem to be enough people to get the work done".
Counselling support
Fertility counsellors connected to clinics or working independently will be able to assist people to work through any anxieties they have, Ms Dickinson says.
"They are there to provide emotional support during treatment, but they can also be a good place to unpack any worries or concerns you might have."
They can also help form questions you might need to ask clinicians, she says, often having "a bit more time" to sit down and unpack things with you.
'The safety of IVF in Australia is high'
Dr Toledo says patients should remember Australia is "one of the safest places in the world" to do IVF.
"We have a very high standard. We have a high level of transparency. Our laboratory standards are excellent, and [success] rates very high."
However, she says a less "fragmented" legislation and regulation would be helpful moving forward.
"There are more than 40 laws governing fertility treatment in Australia.
"We would like to bring that all together under a national framework."
Dr Hammarberg says while fertility treatment in Australia has "more regulation and oversight" than other countries, the publishing of adverse events would be a step forward.
"We do have obligation to report adverse events to the accrediting body, but they don't publish the data."
The accreditation committee has previously confirmed this with the ABC. In a statement it said: "Consistent with other non-government accreditation bodies, [the RTAC] doesn't publicly identify any clinic's audit details".
"It would also be very helpful to know what a clinic would do to avoid this happening again," Dr Hammarberg says.
Ms Dickinson says people who work in the fertility industry, whether it be doctors, nurses, embryologists, or counsellors, are taking recent events "extremely seriously".
"Everyone I have spoken to is absolutely devastated by these revelations.
"They are conscious this is really affecting people."
Do you have an experience to add to this story?
