At the beginning of July, The Haemophilia Society, our UK National Member Organisation, launched a groundbreaking report at the Houses of Parliament, bringing together Members of Parliament (MPs), healthcare professionals, and advocates to highlight how the UK’s health services are failing women and girls with bleeding disorders.
The parliamentary launch event, hosted by Clive Efford MP on 3 July between 2-4 PM and attended by approximately 80 guests, unveiled Underserved, Overlooked: How our health systems are failing women and girls with a bleeding disorder – the culmination of a three-year study examining both existing research and the lived experiences of over 100 women and girls with bleeding disorders.
The event brought together members of both the House of Commons and House of Lords, alongside healthcare professionals, pharmaceutical partners, and members of the UK Haemophilia Society’s Women’s Committee. The gathering was described as “incredibly moving” with inspiring stories from women living with bleeding disorders taking centre stage.
The report makes 19 recommendations that could radically improve treatment and care across the UK. The parliamentary launch represents the beginning of a sustained campaign led by The Haemophilia Society, calling for reform, with the stories, passion, and determination of the women who attended set to drive the conversation forward.
Report Reveals Shocking Healthcare Disparities
The report reveals that despite women and girls making up over half of people with registered bleeding disorders in the UK, they face significant disadvantages in diagnosis and treatment:
- Women are diagnosed 16 years later than men on average
- Up to 50.000 women live with undiagnosed bleeding disorders due to flawed testing systems and failure to investigate common symptoms like heavy periods, nosebleeds and bruising
- Only 8 out of 29 major haemophilia treatment centres offer specialist gynaecology clinics
- Less than half (41%) of comprehensive care centres have a dedicated clinical lead for women and girls
The report also highlights that heavy menstrual bleeding, which is twice as likely in women with bleeding disorders, often goes without proper monitoring for iron deficiency, potentially leading to preventable anaemia.
Kate Burt, Chief Executive of The Haemophilia Society, stated:
NHS bleeding disorder services were built for men, and our report suggests they’re not working for women. A lack of research combined with an outdated clinical and financial mindset is holding back women and girls’ treatment and care.
Dr Nicola Curry, Co-Chair of the UK Haemophilia Centre Doctors Organisation (UKHCDO) Girls and Women with Bleeding Disorders Working Party, welcomed the report. She said:
This is such an important piece of work that highlights the contemporary needs of girls and women with bleeding conditions. The report helps to shine a spotlight on the diverse needs of our patient group and offers important details about how we, as clinicians, can understand better how to personalise patient care, and adapt our services to reflect these needs in our local hospitals. Managing challenging symptoms, such as heavy menstrual bleeding or frequent bruising can be very difficult and there’s more to be done in supporting girls and women with a bleeding disorder to achieve a better quality of life.
