Access and Service Improvement Ambassador
William McKeown, 30, has had prophylactic treatment for severe haemophilia A since he was 5 years old. He doesn’t have any target joint problems and his condition is well-managed so that it doesn’t impact on his quality of life. However, he is very conscious that despite improvements in available treatment for bleeding disorders over the last few decades, not all of his peers are as fortunate. It’s this disparity in care and outcomes that has inspired William to serve as a patient advocate across several organisations in the past 8 years. These include the UK Haemophilia Society as well as other separate organisations such as the European Haemophilia Consortium and Haemophilia NI. He has volunteered as the Haemophilia Society’s Access & Service Improvement Ambassador since 2020.
William lives in the seaside town of Bangor, in Northern Ireland, with his wife Ruth. He is a doctor at the Royal Victoria Hospital in Belfast as a Specialist Registrar in Care of the Elderly and Stroke Medicine and is a Member of the Royal College of Physicians (Edinburgh). William’s training means that he can bridge the gap between actually living with severe haemophilia A and a clinical perspective, and he is passionate about enabling patient voices to be heard at clinical forums.
Although William confesses that he wasn’t that sporty growing up (by choice, not through any limitations resulting from his condition!) today William enjoys road cycling, sailing, and running (including a recent half marathon).
William explains, “I want to help ensure that people living with bleeding disorders get the quality of care that they deserve and so it’s very important that our voices are represented in high level debates and forums about treatments and care.
“A sense of community and support is also vital. My family had no known history of haemophilia when I was born, and I didn’t know anyone else with the condition until my early ‘20s. Now, being so involved with patient organisations, I can see how much I was missing in terms of peer support and sharing experiences with people who just ‘get it’. If you can get more involved, whether with your local group or as a volunteer, then the rewards are so worth it.”
William completed the Step Up Reach Out Leadership Programme for young men with bleeding disorders in 2012/13 with the University of Houston/Bayer® and later acted as a mentor at international meetings. He also served as a patient representative on the UK Clinical Research Group from 2016-2018. Currently, he is completing an expert patient course with the European Patients’ Academy on Therapeutic Innovation.