Wider medical testing should be carried out to detect the “terrible disease” of hepatitis C and ensure it is eliminated faster, the judge chairing the infected blood inquiry has recommended.
On the first day of the main inquiry, Sir Brian Langstaff supported calls for greater public and medical awareness of the condition that has infected 180 million people worldwide.
The inquiry, held at Fleetbank House, near Fleet Street in central London, is expected to last up to three years. It will hear from people who have contracted HIV and hepatitis C through blood products and transfusions as well asNHS and Department of Health officials.
In his opening remarks, the former high court judge said he hoped the hearings would “spread the message that those who are struggling with infections of HIV or hepatitis through blood or blood products are not alone”.
“Anything to increase public knowledge of the symptoms , 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 will be of great value to the public, because so many symptoms of that disease seem to mimic a range of common conditions,” he said.
“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.”
Jenni Richards QC, counsel to the inquiry, said the Hepatitis C Trust continued to receive calls from people who had only recently been diagnosed. Potentially, thousands more people are at risk but not aware they are infected.
The NHS has recently circulated letters to GPs across the country, she revealed, urging doctors to make sure patients who might be infected are given blood tests.
The inquiry has so far identified 341 separate depositories where documents relating to the contamination scandal are held and is working its way through files and electronic records. Researchers have read 2.5m pages of Department of Health documents.
More than 1,200 witness statements have been submitted to the inquiry, which intends to publish them all eventually. Where statements contain criticism of individuals, particularly doctors, they will be contacted in advance for their response where possible.
The first victim to give evidence was Derek Martindale, who suffers from haemophilia, which means he lacks natural clotting agents that prevent him from bleeding.
In the 1980s, he was being treated with factor 8 blood products at York hospital to help control his condition. He and his younger brother, Richard, were diagnosed as haemophiliacs at a young age. Some time between August 1984 and August 1985, he told the inquiry, he was infected with HIV by the treatment he received.
“Following all the reports in the newspapers regarding how Aids and this plague was spread across the globe and how haemophiliacs were one of the high-risk groups, I went to the hospital and asked if I could be tested,” Martindale said.
“I remember the date. It was Friday 13 September 1985. I went to the hospital at lunchtime to get the results. I was told I was HIV positive and that I had about a year to live, also that I was not to tell anybody including my family and my parents. I was 23.”
It was a time when there was public stigma associated with those infected with HIV. “When you are young, you are invincible,” Martindale said. “I was fit apart from the bleeds and then I thought I had 12 months to live. It was hard to comprehend. There was fear. It became more and more prominent in the media warning that they were all going to die. I couldn’t believe this was going to happen to me.”
His brother was also infected, so they could talk to each other about HIV infection. “He became ill. Things didn’t work for him and he died in 1990.” Derek Martindale said he was at the inquiry partly to give evidence on his brother’s behalf.
“He knew he was dying. He knew he had Aids and that he didn’t have long to live. I wasn’t there for him [having moved to London]. It was the biggest regret of my life because he’s gone and I couldn’t do anything to make amends.”
Martindale said one girlfriend had left him after he revealed his condition. “She said she couldn’t stand and watch me die,” he recalled. He subsequently married his wife, Margaret, and had a son, John, who sat alongside him at the inquiry. When he told her about his health, she simply said: “Is that it?” She said they should not hide anything.”
In 1997, Martindale became aware that he had been infected with hepatitis C. He has experienced bouts of pneumonia and pleurisy as a result and been treated with drugs that had caused depression and loss of appetite, he told the inquiry. He has cirrhosis and scarring on his liver.
The inquiry was packed with victims and bereaved relatives. Many wore black, red and yellow ties – black in memory of those who have died, red for HIV and yellow for hepatitis C. There were rounds of applause as the judge and witnesses spoke.
The NHS letter about hepatitis C circulated to GPs was sent out this month. It said: “Hepatitis C often doesn’t have any noticeable symptoms until the liver has been significantly damaged. This means many people have the infection without realising it.
“When symptoms do occur, they can be mistaken for another condition. Symptoms can include: flu-like symptoms such as muscle aches and a high temperature, feeling tired all the time, loss of appetite, abdominal pain and feeling and being sick.
“The only way to know for certain if these symptoms are caused by hepatitis C is to get tested. Clinical staff should therefore consider asking patients who present with nonspecific symptoms whether they may have had blood or blood products prior to 1991 (eg following renal tubular acidosis, childbirth etc) and offering them a screen for blood-borne viruses.”
A government pledge of additional funding for those who have been infected by NHS treatment was criticised for not going far enough by victims and their legal representatives.
Jason Evans, the founder of the campaign group Factor 8, said: “Our members will be bitterly disappointed with the government’s insulting actions today that attempt to overshadow an important day for the victims at the inquiry and represent virtually no change for most of those impacted by the contaminated blood scandal.”
Glenn Wilkinson of Contaminated Blood Campaign, Jackie Britton of Blood Loss Families and Lesley Brownless of Contaminated Blood Women, said: “The latest statement from the government suggests that they still have not got the message – listen to the victims before you act!”
Emma Jones, a solicitor at law firm Leigh Day, who represents more than 300 core participants in the infected blood inquiry, including members of the three campaign groups, said the increased funding was “not an insignificant sum”: the key now was to ensure its best use for the victims. Des Collins, senior partner at Collins Solicitors representing more than 1,000 victims, their families and eight campaign groups, said: “These payments provide a minimal level of support and I fear that the increase announced today will do little to help offset the challenges that many people are facing.”
• This article was amended on 1 May 2019. Owing to an error in the editing process, solicitor Emma Jones was quoted as saying the increased funding was “an insignificant sum”. That should have been “not an insignificant sum”.