The Haemophilia Society and the Infected Blood Inquiry
The Haemophilia Society has a unique role in the Infected Blood Inquiry.
As the only UK-wide charity for people affected by a genetic bleeding disorder, The Society is proud to represent our members at the inquiry.
We know that not all our members feel able to speak publicly about how the contaminated blood scandal has affected their lives and, for those who want it, we are pleased to speak on their behalf.
We believe it is our role to make sure the evidence given to the inquiry is communicated to our members and the wider world, and to ensure that the voice and interests of those with a bleeding disorder are heard.
As part of the inquiry’s investigations, The Society’s role during the contaminated blood scandal is being scrutinised. Evidence from our archives is being studied and former staff and trustees have appeared before the inquiry to talk about the charity’s actions and advice during this period.
It is a matter of public record that during the contaminated blood scandal The Society issued statements reassuring people with bleeding disorders that the new factor treatments were safe and to continue using them.
The advice we gave our members was based on guidance from Haemophilia Centre Directors (now known as the UKHCDO) and from the government. We accept that our actions and statements at the time, while well intentioned and based on expert advice, have subsequently been shown to be damaging to the community and false. For this, we have apologised unreservedly.
The Society has always welcomed scrutiny of our role, and that of other organisations, in order to ensure that this investigation is thorough and effective. Only then can the victims of the contaminated blood scandal get the truth and justice that they deserve. We are playing our full part in helping this to happen.
We know that some of our members are angry and disappointed by actions taken by The Society in the past. Some felt unsupported and believe The Society should have done more to help them. We hope that by opening up our archives to the inquiry and fully engaging with its investigation, criticism can be dealt with openly and honestly.
The Haemophilia Society has been campaigning for a public inquiry since 1988. We hope this inquiry will finally deliver closure, justice and recognition of what has happened and the suffering it has caused.
- Read the key points The Society believes the inquiry must deliver here.