Day 1 of the Infected Blood Inquiry

Our Head of Support Services, Samantha May, has been working alongside members of the Infected Blood Inquiry over the last few months to assist them in gathering evidence and identifying people who have been infected and affected via our long running national patient-led helpline.

She attended the first day of the Inquiry this week and writes about the electric atmosphere in the room and the shocking initial testimonies.

After decades of campaigning by many different groups and individuals, and what felt to many to be a long wait after the preliminary hearings last September, the Infected Blood Inquiry finally started today.

Brian Langstaff, the Chair of the Inquiry, opened the proceedings and urged the media to get the message out there so that everyone who might have been at risk can be tested and treated.

“Anything that they can do to raise awareness is particularly important given that there are some 180 million people worldwide who suffer from it, and the World Health Organization has recently announced that it plans to eliminate hepatitis C by 2030.

“It may be possible to make that happen even earlier in this country but that depends on people being tested; otherwise it will take too long to eliminate what has been a terrible disease.” 

He was followed by Jenni Richards QC, the counsel to the Inquiry, who drew attention to the fact that our helpline regularly receives calls from people who have only recently been diagnosed and yet it transpires that they received blood transfusions many decades ago. Potentially, thousands more people are at risk but not aware they are infected.

We were pleased to hear that letters have been sent to GPs across the country, advising doctors to be alert to the symptoms of hepatitis C and the fact that many of their patients may have had blood transfusions and yet not been tested.

Around 150 people infected and affected by contaminated blood were present to show their support for those who started to share their testimonies. This process will continue for at least the next six months around the UK in a series of hearings that will initially be totally focused on people’s personal stories.

The enormity of the occasion was clear as each person took turns to swear under oath to tell the truth, the whole truth, and nothing but the truth.

The atmosphere was electric, cautiously optimistic and quietly respectful. Everyone fell silent throughout the testimonies, all of which drew attention to the many common issues that anyone who has ever had a diagnosis of hepatitis C will understand.

And the truth was painful. There were reports of diagnoses that had been withheld from the patient for reasons unknown or handled really badly, in one case a patient was told in a brief and barely sealed letter sent in the post, and of course reports of late diagnosis, many years after their initial infection.

We heard about instances where either no or poor information was given, scaremongering from insensitive medics at appointments about the participants and their partners’ respective situations, a lack of support and descriptions of the devastation that both this illness can bring and the brutal side-effects of the early treatments.

All of this is extremely familiar to us at the Hepatitis C Trust: we have been hearing these stories for the last 15 years. However, it was made all the more pertinent and shocking by actually seeing and hearing people bravely recounting their stories in the flesh, rather than on the end of the phone.

We are only at the beginning and here at the Trust we hope to attend as many of the hearings as possible around the UK, to stay informed on the issues raised and show our support.

We will keep you updated with reports from the hearings around the country and you can also view the hearings online here.