Infected Blood Inquiry Opens

Peter Russell

April 30, 2019

The judge chairing the Infected Blood Inquiry called today for greater awareness and further testing to be carried out to detect more cases of hepatitis C.

Sir Brian Langstaff was speaking as the statutory inquiry began its first day of oral evidence into why men, women, and children in the UK were given infected blood and infected blood products in the 1970s and 1980s.

Around 5000 people with haemophilia and other bleeding disorders were infected with HIV and hepatitis viruses through the use of contaminated clotting factors.

Since then more than 3000 people have died, and of the 1200 people infected with HIV fewer than 250 are still alive, according to the Haemophilia Society.

Over the course of the next 2 to 3 years, the inquiry, which has been described as the largest of its kind ever undertaken, will examine the impact on patients' families, how government and health authorities responded, questions of consent, and whether there was a cover-up.

'Greater Awareness on the Part of Clinicians'

In his opening remarks, Sir Brian, a former high court judge, said he hoped witness statements "would help to spread the message that those who are struggling with the infections with HIV or hepatitis through blood or blood products are not alone.

"Anything they can do to increase public knowledge on the symptoms, the causes, and, as so many of you have told me movingly in your witness statements, the consequences of late discovery of hepatitis C in particular would be of great value to the public because so many symptoms of that disease seem to mimic a range of common conditions."

Jenni Richards QC, counsel to the inquiry, said NHS England had circulated a letter earlier this month to GPs to help them support patients who might have been infected with contaminated blood or blood products. "The inquiry brings that letter to public attention, particularly given the presence of so many of the press today, in the hope that it may encourage greater awareness on the part of clinicians as well as greater awareness amongst the public more widely of these issues," she said.

Oral Evidence

Ms Richards said the inquiry had already received 1200 witness statements from individuals infected or affected, with a further 1200 statements expected over the next few months.

First to give oral evidence to the inquiry today at Fleetbank House, Salisbury Square, London, was Derek Martindale. Both he and his younger brother, Richard, were diagnosed with haemophilia as children.

Derek Martindale told the inquiry that he was infected with HIV sometime between August 1984 and August 1985 as a result of treatment with factor VIII clotting agent at a hospital in York.

Aged 23, he decided on his own initiative to seek testing "following all the reports and the articles in the newspapers regarding AIDS and how this 'plague' was spreading across the globe", and because haemophiliacs were included in a list of high-risk groups.

"I remember the date because it was Friday the 13th, September 85," Mr Martindale said. With his son, John, sitting alongside him, holding his arm reassuringly, he continued: "I went at lunchtime to get the results and I was told that I was HIV positive. I was told I had about a year to live, and I was told not to tell anybody, including my family and my parents."

Mr Martindale acknowledged that concerns the diagnosis could make him a social pariah were behind that advice.

Asked by Jenni Richards QC to describe the impact of the diagnosis, Mr Martindale said he had to face up to having no future and little prospect of getting married and having children. He described how one girlfriend left him following his diagnosis. "She said she couldn't stand and watch me die," he said.

Mr Martindale later married his wife, Margaret, with whom he had his son. When he told her about his diagnosis she said: "Is that it?".

In 1997, he was diagnosed with hepatitis C.

Mr Martindale said that his brother, Richard, had died in 1990, aged 23, after developing AIDS as a result of receiving contaminated blood products.

In emotional testimony he described as "the biggest regret of my life" being unable to comfort his brother when he was "wasting away", a few weeks before his death. "He wanted to talk about his fears, how scared he was," Mr Martindale said, "but I couldn't – it was too close to home for me."

Diagnosis Delay

The second witness, Carole Anne Hill, was diagnosed with hepatitis C in January 2017, 30 years after being infected during a blood transfusion during treatment for menorrhagia.

Dr Hill, an academic, said she received no information at the time about the risks associated with her treatment. Over the course of 3 decades health professionals had never asked whether she had ever received a blood transfusion.

She said she was never told about her test for hepatitis C and the first she knew was when a letter arrived confirming the infection which she said came as an "incredible shock".

In her closing comments, Dr Hill said: "I don't think it's particularly helpful at this juncture to start pointing fingers at medical professionals who largely didn't know what they were dealing with when they were prescribing transfusions."

However, calling for people to be better informed about the risks associated with contaminated blood and blood products, she added: "The fact is that there are thousands of people out there who, like me, didn't have the least idea that they'd got hepatitis C. There may be a whole wave of work coming from that, and I hope it's going to be handled a darn sight better than it has up until now."

Compiling the Evidence

The inquiry heard about the huge amount of evidence being compiled by researchers behind the scenes. At least 2.5 million pages of information from the Department of Health and Social Care (DHSC) and the Medicines and Healthcare products Regulatory Agency (MHRA) had already been analysed, and work had yet to begin on electronic records from those bodies.

Shortly, a team of researchers would begin full-time work looking for evidence stored in the National Archives.

Over the next few months, oral witness statements would be heard in Leeds, Belfast, Edinburgh, and Cardiff. In his opening remarks, Sir Brian Langstaff said: "I promise that the inquiry will put people at its heart."

Later this year, the inquiry will hear clinical evidence, with evidence from decision makers and the Government heard in the spring of 2020.

Further Financial Support

Earlier today, the DHSC announced that the Government would increase financial support for those infected and affected by the infected blood scandal in England. It said regular payments would increase from a total of £46 million to £75 million.

It said recipients, including bereaved spouses and partners, could also be eligible for other means-tested discretionary financial support.

The Prime Minister, Theresa May, said: "The contaminated blood scandal was a tragedy that should never have happened and has caused unimaginable pain and hurt for victims and their families for decades.

"The start of the inquiry today is a significant moment for those who have suffered so much for so long, as well as for those who campaigned and fought so hard to make it happen.

"I know this will be a difficult time for victims and their families ‒ but today will begin a journey which will be dedicated to getting to the truth of what happened and in delivering justice to everyone involved."

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