A BALLARAT woman likens her experience with assisted reproductive treatment to "being drawn along towards a dangling carrot". She said the constant perception of and sheer desperation for hope could keep you trying and putting your body on the line to fall pregnant.
Hannah, as she wishes to be known, shared her personal and emotionally raw struggles to become a mother to the state's Health Complaints Commissioner in a public hearing in Balllarat. While there are a wealth of success stories with assisted reproduction, Hannah wants there to be change for all prospective parents to better understand what treatment processes would likely entail.
"There is such a strong wish for privacy from those who have gone through this and from many who might still be patients," Hannah said.
"...There is a hidden grief for many. When someone dies, there is time to grieve. But this is a grief, sometimes for a small thing; there is grief sometimes for nothing, which can be harder, for what could have been; and, there is grief for false hope."
There is a hidden grief for many. When someone dies, there is time to grieve. But this is a grief, sometimes for a small thing, sometimes for nothing.Hannah
Hannah said the themes emerging in the Ballarat consultation were in line with stories across the state, mostly concerns in a lack of information on cost, side-effects and the treatment process.
She felt many who spoke to the commissioner on behalf of providers were out of touch men. This was why Hannah spoke to The Courier, to encourage more women and their partners to speak up in the inquiry to help guide change.
"Men, and partners, seem to be completely under-respected when, apart from the drug treatment, they're going through the same process as the women," Hannah said. "There are no real support groups for partners, male or female."
Partners, seem to be completely under-respected when, apart from the drug treatment, they're going through the same process as the women.Hannah
Hannah and her partner chose not to continue in vitro fertilisation after they were unsuccessful in the process. Their choice was largely based on Hannah's strong adverse reaction to treatment drugs.
Victorian Health Complaints Commissioner Karen Cusack said personal stories were so important to best gain a balanced view on what was happening in the assisted reproduction sector.
The inquiry is collection submissions from those who had accessed fertility services, including their family and friends, service providers and other interested stakeholders.
Ms Cusack said as well as cost and communication another key concern emerging from consumers was counselling. While mandatory before starting the process, Ms Cusack said what the inquiry was hearing was many felt counselling was a "tick the box" process and not necessarily available when most beneficial.
This can be such an emotional time for people, even several years later and even if they had a successful result.Karen Cusack, Victorian Health Complaints Commissioner
"We're still keen to hear as many stories as possible. We don't have a preconceived idea what this report will take," Ms Cusack said. "...This can be such an emotional time for people, even several years later and even if they had a successful result.
"It can be really positive for us to talk about stories and share stories...Same thing with providers who are willing to listen and hear feedback for where things identified can be improved."
Submissions can be made online at hcc.vic.gov.au/public/ARTsubmissions. The commissioner will deliver a report to the Health Minister by the year's end.
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