SUZANNE O’CALLAGHAN
Suzanne O’Callaghan is HFA Policy Research and Education Manager
What are the experiences of Australian women and girls with bleeding disorders when they speak up for themselves in health care settings?
What tools or resources help them in these settings?
In March-April 2026 Haemophilia Foundation Australia (HFA) conducted the Women bleed too survey to find answers to these questions. Bleeding disorders are rare and health professional knowledge in non-specialist settings can be limited. We wanted to understand what strategies or resources work well in the experience of our community and what else is needed.
The survey is part of HFA’s strategic work with the HFA Women and girls Advisory Group (WOMAG), aiming to facilitate better access to diagnosis, treatment and care for women and girls with bleeding disorders in Australia.
It has been recognised internationally that women and girls with bleeding disorders face particular challenges, with delayed diagnosis and access to specialised treatment and care. Finding ways to address this is a priority for HFA but also part of an international discussion. HFA also took the opportunity to present the results of this survey and contribute to the strategies discussed at the WFH 2026 World Congress Improving diagnosis and multidisciplinary care for women and girls with bleeding disorders workshop.
The survey was open to:
100 participants completed the survey. Nearly all were female.
90% completed the survey about their own experience and 10% about the experience of a female partner or family member. Some had multiple roles as a person affected by a bleeding disorder and as a parent/family member.
Survey responses covered the range of age groups from 0-12 years to 75 years and over. Nearly all states and territories were represented. 47% of participants lived in a capital city; 30% in a regional city or shire or large country town; 11% in the rural/urban fringe of a capital city; 10% in a rural area or small country town; and 1% in a remote area.
A diverse range of bleeding disorders were represented, with most affected by haemophilia or von Willebrand disease (VWD). A small number had not yet been diagnosed and fell into a category of Bleeding Disorder of Unknown Cause (BDUC).
The survey asked about experiences of women and girls when seeking treatment and care for their bleeding disorder in health care settings in the last 5 years.
81% described having at least some positive experiences, while 7% had not had any positive experiences.
‘I have had a very positive experience recently with my gynaecologist who is very knowledgeable about bleeding disorders and communicates well with the HTC, making the experience much less stressful for me.’
‘Experiences in the last 5 years are very positive. Prior this not so much.’
‘A GP that won’t listen.’
When asked about their main challenges with access to health care in relation to their bleeding disorder, the participants described a number of barriers that impacted on appropriate treatment and care. Many had experienced doctors who didn’t know about bleeding disorders. Some reported that their doctors did not believe that females have bleeding disorders or that their treatment was required in emergency situations or for surgery. Many felt their experiences of bleeding or complications were dismissed or that the doctors were too busy to listen. Even in their Haemophilia Treatment Centre (HTC), they could have limited access to comprehensive care. Some had difficulty with referrals for testing. Some said it was hard to explain what their bleeding problem was to health professionals.
‘Some medical professionals think that they should re-test for the diagnosis even though I show them proof. They think they can test my blood when storage pool disorder doesn’t show up in local testing.’
‘Told every doctor I was a symptomatic carrier of haemophilia before major surgery last year. None took it seriously until I was a MET call post op. Bleeding into hip after a hip replacement.’
‘I use the term mild haemophiliac instead of symptomatic carrier so they understand to take me seriously.’
‘I regularly avoid treatment if it is outside business hours to avoid the emergency department. It is too hard to explain or fight for care when I am already unwell.’
‘Navigating perimenopause treatment has been very challenging with lifelong heavy bleeding continually being dismissed as “normal for you”.‘
‘I felt my HTC was dismissive. I was discharged, as my factor VIII [levels] are now within normal limits after menopause. My point of view is that I will always carry a defective gene, and I have issues such as osteoarthritis and associated pain as a result of low factor VIII levels when I was younger.’
‘ “I’ll put extra stitches so it won’t bleed!! I’ll cauterise. You’ll be fine.” ‘
‘Lots of doctors aren’t aware what von Willebrands is and therefore continue to tell me to take aspirin or my kids nurofen which they aren’t allowed.’
‘I have haemophilia A with 11% factor VIII and von Willebrand disorder. Many health care practitioners often think that I am just a carrier and not symptomatic. I have recently had a GP say, “But I though only men can have haemophilia.” There are also more complexities in regard to having two bleeding disorders that cause further complications, this becomes just too hard to explain to GPs and I often just say haemophilia.’
Participants were asked what tools or resources they had used to help with understanding the bleeding disorder or discussing it in health care settings.
The tools/resources were in categories:
Bleeding Assessment Tools (BATs)
Education resources
Official medical treatment plans/advice
Personal records
Supportive strategies
Most said they had not used any of these tools or resources for education or self-advocacy. Of those who had, official medical treatment plans or advice and education resources were most used. Some commented that they did not have an ABDR patient card or treatment plan to use.
Health care settings
The participants who had used these tools or resources reported that the most useful in health care settings were official medical treatment plans or advice, such as the ABDR patient card or calling the HTC – because ‘doctors [are] likely to consider information from other doctors’. This was followed by BATs, although some commented that they hadn’t heard of them or that BATs underestimated bleeding symptoms.
While personal records such as photos of bruises or a period diary and education resources held less weight in health care settings, they were still useful. However, some expressed their disappointment that their personal records had been dismissed or not understood. It was interesting to see that more than half (15/28; 54%) found supportive strategies such as having a list of questions or taking someone with them to the appointment to be extremely or very useful in health care settings.
Personally
Supportive strategies, education resources and official medical treatment plans/advice were seen as the most useful personally. 85% (34/40) had used HFA education resources including National Haemophilia magazine and the Conference, with comments such as:
‘This was so helpful as this is how I learnt about my bleeding disorder. And the articles since have provided so much education around what I experience and what else is available.’
Some used general web searches and ChatGPT to inform themselves. BATs and personal records also rated highly as useful to participants personally.
What other tools or resources are needed to help discuss care of women or girls with bleeding disorders in health care settings? Educating medical health professionals was by far the most common response.
‘The only thing I can think of is education of GPs and hospital staff. If a doctor won’t believe that women can have a bleeding disorder, there is no way a patient can change their mind. I have on multiple times been told that I am mistaken and it doesn’t work like that and I don’t have a bleeding disorder.’
We are very grateful to the community members who participated in the Women Bleed Too survey. Their responses are immensely valuable for HFA and WOMAG to plan how to undertake work to address these issues. This includes collaborative initiatives with the Australian Haemophilia Centre Directors’ Organisation (AHCDO) and HTCs and HFA projects to create self-advocacy resources to support women and girls with bleeding disorders in the health care setting.
WOMAG is currently working with HFA on some personal stories about self-advocacy strategies and an education resource to help women and girls to prepare for GP consultations and Emergency Department visits. Watch this space!
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