European Conference Discusses Better Support For Women

Written by Jeff Courtney, May 21, 2022

The weekend of 21 and 22 May 2022 saw the second ever European conference dedicated to the impact that bleeding disorders have on women and girls. Over half of people with a bleeding disorder in the UK are women but standards of care vary wildly and many struggle to get the recognition they need.

Myself, Women’s Working Group member Bonnie Charles and our Trustee Jo Traunter (L-R above) attended the event in Basel with other haemophilia societies from across Europe and North America to discuss what good care looks like and to share strategies for advocating for better outcomes.

The first day at the conference focused on quality of life for women with bleeding disorders and their specific needs. Speakers presented the challenges to ensuring data is collected that shows the impact that bleeding disorders have on women. Many women have symptoms that impact on their quality of life but they often don’t seek clinical help. If they do they often see their concerns dismissed and major delays in diagnosis.

We worked on what good comprehensive care looks like for women and girls with bleeding disorders. They need a full multi-disciplinary team that which must include obstetrics, gynaecology, fertility, midwifery, specialist nurses, laboratory and genetic counselling. There are some centres in the UK that have very good women’s clinics but best practice is hard to replicate across the country due to a lack of specialist staff and resources.

We are helping women to advocate for better care for themselves through our Talking Red campaign. The next step is to get the European Principles of Care for Women and Girls into national guidelines and service specifications so we can see them in practice in the UK.

There is more information about women and bleeding on our website. If you think you might have a bleeding disorder but don’t have a diagnosis you can use our quick online symptom checker.