Conan McIlwrath: The Haemophilia Society Engages With IBCA
Conan McIlwrath, Chair of the Board of Directors at The Haemophilia Society, shared a post on LinkedIn:
“Yesterday, trustees and staff from The Haemophilia Society visited the Infected Blood Compensation Authority (IBCA) in Newcastle for a full day of discussion and engagement.
It was a valuable opportunity to see more of the claims process first-hand, but more importantly, to have some very direct conversations about the experience of our community.
We were joined for part of the day by colleagues from the Cabinet Office and the The Hepatitis C Trust, and we used the opportunity to share evidence, individual experiences and some of the recurring frustrations we continue to hear from people navigating the compensation process.
As Chair of The Haemophilia Society, I was clear that while we have always wanted IBCA to succeed, our support must come with challenge.
There are still significant concerns around the pace and complexity of claims, the burden of evidence being placed on people, and the experience of affected families in particular.
Behind every process, target and case number is a person or family who has already waited far too long.
Some of the conversations were difficult – but they needed to be.
I was encouraged by the willingness of those in the room to listen and engage openly.
This morning we were welcomed by David Foley who didn’t shy away from his responsibility and took our criticism respectfully, what matters now is what happens next, and whether that engagement translates into meaningful change for the community.
Thank you to everyone at IBCA for hosting us, to the Cabinet Office for joining the discussion, and to our trustees, staff and colleagues from the Hepatitis C Trust for contributing so openly.
The Haemophilia Society will continue to be a constructive partner where we can – and a critical friend where we must.
And now, after a busy few days in Newcastle, it’s off to Malta in the morning for World Federation of Hemophilia Twinning Program – a very different conversation, and a great opportunity to share experiences and learn from colleagues in the Maltese bleeding disorders community.
It’s certainly not a quiet week!”
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