The Haemophilia Society and the Infected Blood Inquiry

The Haemophilia Society (THS) had a unique role in the Infected Blood Inquiry.  

As the only UK-wide charity for people affected by a genetic bleeding disorder, we were proud to represent our members at the inquiry.

Not all our members feel able to speak publicly about how the contaminated blood scandal has affected their lives and, for those who wanted it, we were pleased to speak on their behalf. 

We wanted to make sure the evidence given to the inquiry was 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, THS’s role during the contaminated blood scandal was scrutinised. Evidence from our archives was studied and former staff and trustees 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 THS 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. We know that some of our members are angry and disappointed by actions taken by THS in the past. Some felt unsupported and believe more should have been done more to help them.

We have always welcomed scrutiny of our role, and that of other organisations, in order to ensure the inquiry’s investigation was thorough and effective. We played our full part in helping this to happen. 

The Infected Blood Inquiry’s conclusions about the Haemophilia Society can be found in Volume Four of the report, from page 449 onwards. We accept the criticisms made by the inquiry. We wrote to our members about the report; you can read the statement here.

We were pleased to note that the Infected Blood Inquiry recommended the Haemophilia Society, along with other charities, should be given government funding to continue our patient advocacy work. Our support for our members affected and infected by contaminated blood products remains steadfast as we navigate post-inquiry issues such as compensation and the need for better psychological support in England.