Chair of Trustee’s Letter

An open letter from Clive Smith, The Haemophilia Society’s chair of trustees, on the inquiry.

Dear members,

As one of three brothers, all with severe haemophilia A, I have grown up in the shadow of the contaminated blood scandal. Like many of you, I have lost friends and peers to this treatment disaster that should never have happened and for which no one has ever been held accountable.

Many in our community did not believe that the Infected Blood Inquiry would ever happen. Now that it is underway at last, we must all continue to fight to ensure that truth and justice are finally delivered. I feel honoured to be chair of trustees for this charity at such a pivotal moment in its history.

For me, finding the truth means complete openness about what happened. It means shining a light into every corner of government, pharmaceutical companies, public health organisations and the Haemophilia Society itself to flush out every detail. Everything must be exposed, because only then can our community begin to look to the future, rather than backwards at a dark past.

Clive Smith

We know that for many, both living and dead, justice will never be achieved. No apology will ever suffice and no recompense can take away the heavy burden that has been carried by so many, for so long. The anger at the lies that had to be told and the shame that had to be endured cannot be washed away. I hope the inquiry will recognise that this scandal has torn apart thousands of lives.

For the inquiry to deliver justice to our community, we need to know what happened. We need to ensure people affected and infected have the financial support and security they are entitled to, without having to go cap in hand for money which, by rights, should already be theirs.  Justice means making sure this never, ever happens again and that individuals and organisations are held accountable for their actions.

Our legal representatives, Eversheds Sutherland, are central to our goal of assisting the inquiry in finding that truth and justice and in ensuring that you, our members, are heard. Eversheds Sutherland offers us vast experience of public inquiries in the UK. I was particularly impressed by their experience in dealing with people who have been victims of incompetence and mismanagement and the way in which the firm has managed people’s emotional sensitivity in those circumstances.

THS’s engagement with the inquiry and our support for those of our members who want their voices heard in that process is just one area of our work. We are the only UK-wide charity for all those affected by a genetic bleeding disorder and I am very proud of the specialist support and information we offer to our community through every stage of life. Through our international network we are able to ensure that best practice is shared throughout the world. THS makes a huge difference to the lives of people with haemophilia and other bleeding disorders and continues to look at new ways of supporting our community.

Today the haemophilia community is once again the focus of the development of novel therapies which may offer significant medical breakthroughs. But we need to be mindful of history to ensure that the risks associated with new treatments are fully understood. We live in exciting times, but we must temper that with caution and learn lessons from the findings of the Inquiry.

The outcome of this inquiry cannot undo the past, but it can and must expose the truth behind this scandal and bring those responsible to account.

Yours faithfully

Clive Smith

Chair of the Board of Trustees
The Haemophilia Society

April 2019