Infected blood victims may not yet have been told why they feel ill, inquiry hears

Thousands of victims of contaminated blood may not yet have been told the reasons why they are feeling unwell, the chair of the inquiry into the NHS scandal hassaid.

Formally opening the Infected Blood Inquiry, Sir Brian Langstaff said that many people may not have been diagnosed as suffering from hepatitis C, which they acquired through blood transfusions received when they were younger.

“It is a truly sobering thought,” he said, “that if some claims are well-founded – and it will be for this inquiry to find out if they are – there may yet be many thousands more who do not feel well but have not yet been told that the reason for this is that their life is threatened by hepatitis C… [It is] a sobering thought that the consequences of what was done then may be continuing to cause death even now.”

The inquiry will investigate how so many people with haemophilia and other patients were given blood plasma from the US carrying HIV, hepatitis C and other viruses. Some products were made from blood donated by prisoners and drug addicts who were paid.

More than 25,000 people may have been infected, Langstaff said. Accurate figures have yet to be established but he pledged to put those affected at the heart of the inquiry. The principle he said would be to give proper respect for “a person’s entitlement to be heard”.

Some of the inquiry’s hearings will be held outside London – in Edinburgh, Belfast and probably Leeds – to encourage people to give evidence. Langstaff said he was determined the inquiry would be properly funded so that it could be as “legally open and transparent as possible”.

The inquiry would do its best to obtain documents that may not yet have been seen. It would “hold people to account where appropriate” he said, “to express its views at the end without fear or favour, affection or ill-will.”

During a commemoration event to mark the opening of the inquiry, a choir sang as those infected and affected lined up to place glass phials carrying messages about those they have lost on medical-style laboratory racks in front of the stage.

Theresa May announced the inquiry in July 2017.

The commemoration opened with a video sequence of pictures of the victims and their families accompanied by Emeli Sandé’s song Read All About It (Part III) which contains the lines: “You’ve spent a lifetime stuck in silence … So put it in all of the papers, I’m not afraid / They can read all about it, read all about it.”

In a statement read out to the inquiry at Church House in Westminster, the audience was told that nearly 3,000 people had died and that the number kept rising. Half of the people with haemophilia who were infected have now died. Young women looking forward to family lives, the statement said, were unknowingly infected by their husbands.

Medical records had gone missing and government documents were destroyed, those gathered for the inquiry were told. Financial support to enable sufferers to live with dignity had been denied, it was said.

A succession of unnamed victims then recounted in short prerecorded statements how they and their loved ones had contracted HIV, hepatitis C and other potentially fatal viruses from blood and plasma transfusions, mainly in the 1970s and 1980s.

One woman said: “Every time I shut my eyes I was looking at a coffin. I was sure I was going to die.” Another victim said: “It wrecked my marriage. It had a serious impact on my career.” A man said: “I was told I had two or three years to live: ‘Go away and make your will.’ Every day I have to take a toxic combination of pills just to stay alive. I lost my job, I nearly lost my wife and we have had to live on the breadline.”

Jenni Richards QC, counsel to the inquiry, said it would investigate whether people were treated or tested without their knowledge. Documents from as far back as 1948, when the NHS was established, are being sought.

Already 1,288 people and organisations have been granted core participant status, the largest for any public inquiry. The Scottish government has declined to be a core participant on the grounds that there have already been previous inquiries into infected blood.

Richjards said the inquiry was expected to last about one and a quarter years once it starts taking evidence in April next year. It is likely to question former government ministers.

Des Collins, a partner at the law firm Collins Solicitors, which represents more than 800 relatives and survivors, said: “For those affected, their families and the campaign groups, this is a day few thought that they would ever see – and it is a testament to those who have campaigned so hard to make it a reality. The feeling among our many clients is that they felt that the government had washed its hands of them, but now those responsible – both in government and at pharmaceutical companies – will be held to account. For so many people, whether affected or mourning those who have died owing to contaminated blood treatments, this is critically important.”

The law firm Leigh Day is representing more than 240 people as core participants who have been affected by the contaminated blood, both those given the blood through routine transfusion such as following an accident, complications during childbirth or routine dental treatment, and people with haemophilia who were given infected blood products.

‘We have been stigmatised’: case studies

• Anthony Ferrugia, 46, from St Neots in Cambridgeshire, lost his father, who had haemophilia and needed blood transfusions, in 1986. “My father was one of three brothers. All were infected. My father had HIV, hepatitis B and hep C. One uncle was infected with Creutzfeldt-Jakob disease. All three died.

“My family were haemophiliacs. Some of my cousins have died. One developed cirrhosis of the liver from hepatitis C. It’s been 32 years burying our dead and we haven’t finished yet.

“My father had five sons. I was 14 when he died at the age of 37. I was placed in care and didn’t see the rest of my brothers for 26 years because we were all separated. All of the brothers didn’t meet again until 2010.

“‘We would like recognition and an admission of wrongdoing so that the public are aware of what’s happened. It’s been hidden away for far too long. We have been stigmatised with having HIV. People didn’t speak out. It has been covered-up because of the scale of the disaster. “

• Mark Ward, 49, describes himself as a “severe haemophiliac”, having been diagnosed with the condition when he was only three. “From the first treatment the blood product was tainted and filthy. It was at Great Ormond Street hospital. They were saving my life because I used to have nosebleeds.

“But they were also infecting me with viruses. I had hepatitis A, B and C, HIV, Epstein-Barr virus and many others. I used to bleed all over my mother and they put her life at risk as well. I was told I had HIV in 1983 when I was 14. I have been living on borrowed time for many years.

“The nurses told my family when they were on a hospital visit. They shouted across the NHS waiting room: ‘Do you want to know Mark’s HIV results? He’s positive.’

“We want to truth to come out. We want the power of giant pharmaceutical companies over government to end. My life was deemed to be worth less than their profits. There were warnings about these blood products as early as 1958.”

• Chris Smith, 40, lost his father, who was a severe haemophiliac, when he was only eight. “He was contaminated in 1985 with HIV and hepatitis C and died the following year. They picked it up on a routine test and didn’t rush to tell him. He left myself, an 18-month-old child, and my mum.

“There was no one before him who had haemophilia in our family. It just appeared. I have also lost my cousin. No one wanted to be associated with HIV because of the stigma attached to it. There were families at the time who had ‘Aids Scum’ spray-painted on this homes. It was like a dirty secret.

“People used to say their father died in a car crash or had cancer rather than admit their father died of Aids.

“The majority of this suffering could have been avoided. If they had acted earlier people might have been left with hepatitis C but no one needed to get HIV or Aids which came later.”

“There needs to be some sort of accountability. There’s been no blame in any way. What we would all like to see is the truth.”