Open letter from Chair of Trustees

As Chair of The Haemophilia Society, and a member of many years standing, I welcome the official start of the long-awaited Statutory Public Inquiry into the contaminated blood scandal. As part of this community I am acutely aware of the impact this has had on individuals, their families and loved ones. We have waited decades for this and want the truth to be revealed and for people to find justice and, hopefully, closure.

The Inquiry has deep personal significance for me as I both lost a brother and sister in law, infected through contaminated blood and I, myself, contracted Hepatitis C as a result of the Factor VIII treatments I received.

Through my role as Chair and the conversations I have had with those who live with, or have lost relatives through, this tragedy I know there are many who do not feel they can be heard as they are not natural ‘campaigners’. Our role at The Haemophilia Society is to help the ‘quiet voices’ of those affected by bleeding disorders in the UK and, through our international networks, ensure best practice is shared across the world.

The work of The Haemophilia Society is much valued by our members and I take great pride in the work of such a dedicated organisation. We create events and provide services which our members want. We have held events for older haemophiliacs, for women with bleeding disorders and we have a youth ambassador programme. Because there is only 1 haemophiliac in every 10,000 people, you are, perhaps, the only haemophiliac in your town and almost certainly in your workplace or your school, unless your brother has haemophilia too. Just to be able to meet others with the condition and talk to them is a big deal, particularly for the families of newly diagnosed young children. To be able to get together in local and regional groups is an important opportunity to talk with others about how you face the challenges life can present. As an organisation, The Haemophilia Society is there at all the stages of life.

In addition to our core services of providing advice, guidance and support to those with bleeding disorders, their families and carers, we are committed to participating fully in the Inquiry into the Contaminated Blood Scandal, supporting people and providing representation for the many who are worried their stories and views will not be heard by this much fought for Judicial Review. We are here to help those people, and their families, who continue to suffer from actions taken almost half a century ago in their quest for justice.

We recognise there will be difficult questions for our own organisation to answer, and are happy to be scrutinised. All individuals or organisations must be asked to account for their actions in the quest for the truth.

I am very pleased that, at last, the Inquiry is getting underway and that, whatever the truth is, it comes out and we all get the answers we have deserved for so long. I want to be able to tell my mother, who is 83, why her son and his wife died, what the cause of that was. After all these years this will, hopefully, give her peace.

I urge you to follow this historic Inquiry, and to keep in touch with The Society. The Society welcomes questions from members regarding the Inquiry and is keen to provide information and support to anyone affected by the Inquiry and its areas of exploration. To get in touch, you can join our dedicated Facebook Community for the Public Inquiry, or contacts us via email: publicinquiry@haemophilia.org.uk or phone: 0207 939 0780. I am incredibly proud to be Chair of a team of such hard working and dedicated people. For a small group of people to do as much as they do for such a broad and varied range of people and circumstances is incredible.

Please forward this letter to any family members who have ceased to be, or have never been, Society members but who are stakeholders in the Inquiry. Like all of us they too are seekers of the truth.

The Society is committed to seeking the truth and will not rest until justice is achieved for all. This has been a long time coming, for so many people, some, like those in my own family who have not lived to see this Inquiry get underway. Together, we can ensure justice is served.

Barry Flynn

Barry Flynn – Chair of Trustees, The Haemophilia Society

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