In November, I attended the Haemophilia Society’s The Big Get-Together 2024. During the conference, I was struck by the differences of those attending. There were those who are now in their 80s who have lived a life with haemophilia, there were also new parents whose children had haemophilia and were coming to grips with what that meant, and there was everyone in between.
The Haemophilia Society showed an amazing short film during the conference. This centred around the experience of someone with haemophilia who was poisoned with infected blood. It showed their life as they started a new relationship. It was a touching and emotional view into the experience of people who were infected.
I took part in a session which gave me the chance to share with those attending the way the Infected Blood Compensation is operating. I then had the opportunity to talk to people individually about their hopes and fears about our compensation scheme. It was fantastic to spend the day listening to people and understanding what IBCA can do better.
I learned that people want and need more information from us. People want us to pay compensation as quickly as possible, but they also want us to get it right. They understand why our approach makes sense, especially when I described what the alternative would look like.
It was great to meet people and to share with them the latest from IBCA and our ambition for the future.
Getting out and meeting and listening to the community is absolutely crucial to everything I do. Thank you to The Haemophilia Society for inviting me and giving me the opportunity to share more about IBCA.