SHIRLEY WONG
Shirley Wong is Acting Haematology Clinical Nurse Specialist at Perth Children’s Hospital, WA.
I was fortunate to attend my first World Federation Haemophilia Congress this year (2026) held in Kuala Lumpur, Malaysia. The Congress has provided a very valuable platform for me to learn about the latest advancements in haemophilia care and other bleeding disorder as well as to connect with healthcare professionals from around the world.
Among the many sessions offered, I was particularly looking forward to those held during Nurses’ Professional Development Day. These sessions were highly relevant to my role and offered practical insights into improving patient care, enhancing clinical skills and strengthening multidisciplinary collaboration.
Co-chairs ~ Marlène Beijlevelt, Netherlands; Erica Crilly, Canada; Anjalin D’Souza, India; Cathy Harrison, UK; Jennifer Maahs, USA; BJ Ramsay, New Zealand
Establishing nurse-led clinics ~ Erica Crilly, Canada
Nurse triage: MSK assessment ~ BJ Ramsay, New Zealand
A key highlight related to my experience was the session on nurse-led clinics, with a special focus on women and girls’ bleeding disorder clinics. The session highlighted and reminded us (myself in particular) the importance of recognising and addressing bleeding disorders in women and girls, a group that has historically been underdiagnosed and undertreated. It was inspiring to see how nurses can take on expanded roles in patient management, contributing to improved outcomes and a more patient-centred care. The discussions shared during this session have motivated me to explore how similar approaches could be applied in my practice in our clinic/institution.
Following this Congress I would like to make some proposals to formulate a nurse-led clinic for girls and young women with bleeding disorders using the multidisciplinary clinic model. We recognised that adolescents need age-appropriate education that removes shame and empowers them to manage their symptoms especially around menarche.
One of the other key takeaways for me was developing a deeper understanding of joint management in patients. With the advent of transformative therapies, we are now seeing fewer joint bleeds within our institutions. However, during one of the musculoskeletal (MSK) sessions, I was reminded that this area of care should never be overlooked, particularly when parents contact us regarding injuries or possible spontaneous bleeds that may arise unexpectedly, even in the absence of strenuous activity.
The session reinforced that although these new therapies are transformative, they are not sufficient on their own. Joint health still requires continuous monitoring, and physiotherapy remains a cornerstone of MSK management. Most importantly, in this new era of care, we no longer solely focused on treating bleeds, but on protecting joint health for life.
As nurses, we are often the first point of contact through triage phone calls. This session reminded me of the importance of thorough history-taking and careful assessment. Our questions should explore whether parents or patients have noticed any changes in movement, and we must never dismiss ‘minor’ symptoms, especially pain, even when no other accompanying signs or symptoms are present.
With these insights in mind, I hope to provide more effective support and guidance to parents, while also coordinating timely multidisciplinary care with physiotherapists to ensure the best possible outcomes for our patients.
Australian haemophilia nurses were assisted to attend the WFH 2026 World Congress through funding from a variety of sources. For more information, see the WFH 2026 Congress article.
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