‘It made us social pariahs’ - Black Isle campaigner reflects on personal impact of infected blood scandal
As he reflects on the personal impact of the UK infected blood scandal, haemophiliac Bruce Norval recalls how he was once threatened in an Inverness city centre pub as a bottle was held against his face.
It was the mid-1980s when many people with haemophilia - a disorder where the blood does not clot properly - faced stigma and abuse as they became associated with the HIV epidemic.
Mr Norval, who did not actually have HIV, found himself on the receiving end of ignorance and violence.
“It isolated families,” he recalls. “We became social pariahs.
“In my own life, it forced me out of Inverness.
“I had faced death threats. People suggested if I did not leave they were going to start harassing my family.”
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Mr Norval (59), who later returned to the Highlands and now lives on the Black Isle, was given infected blood products by the NHS after being diagnosed with haemophilia, aged three, and unknowingly used as a human guinea pig for research.
He was among 30,000 victims - including 3000 in Scotland - who were infected with HIV or Hepatitis C in the 1970s and ‘80s from receiving transfusions during surgery, or through products created using blood plasma and imported from the US to treat haemophiliacs.
It has consigned him to a lifetime of chronic ill health, depression, social isolation, unemployment, financial hardship, broken family relationships - and a relentless search for answers in the face of not being believed.
After spending decades trying to expose the truth, Mr Norval and other campaigners were finally vindicated when a scathing report following a public inquiry described the scale of the scandal as "horrifying" and accused doctors, the government and NHS of repeatedly failing patients and then covering it up.
Prime Minister Rishi Sunak delivered a state apology and the UK Parliament passed the Victims and Prisoners Bill, creating a new arm’s length body called the Infected Blood Compensation Authority.
As Mr Norval, who is married with a son and a daughter, absorbs the verdict and prepares to look at the findings in finer detail, he reflects on the years when he was labelled a conspiracy theorist and marginalised and recollects the friends and fellow campaigners who have died along the way.
He talks in detail about the all-consuming research going back to World War II in pursuit of justice. He describes the overwhelming sense of horror when he first discovered he had hepatitis C and could have unwittingly passed it on to his pregnant wife and unborn child.
He wryly relates his arrest along with fellow activist Andy Gunn after throwing paint at the Scottish Parliament on its official opening day in October 2004 as the pair took direct action to highlight their scandal.
His story was even re-enacted on the stage in a powerful drama, Factor 9, written by Hamish MacDonald and performed by Dogstar Theatre Company.
On his lapel, Mr Norval wears a badge in symbolic colours of red for HIV, yellow for hepatitis and black for death - a stark reminder that many victims died before seeing the inquiry report its findings.
He is left with a sense of stolen years and lost opportunities along with years of facing stigma.
His plan to pursue a career in nursing, for example, was cut short when as a student nurse in Arbroath he was summoned into a meeting and informed he was an unacceptable risk to his patients and needed to leave the hospital and the nurses home.
Another pivotal moment was the Inverness pub incident when aged 20 he found himself in a situation where a man held a bottle against his face as police watched on.
“I realised at that moment I couldn’t stay in Inverness,” he says.
He went to London where he became a roadie for bands including Motorhead and lived in a shared house until a housemate saw a letter addressed to Mr Norval containing details of a negative HIV test.
He then found himself homeless and leading a life of “existence” but resisted returning to Inverness in case it threatened his family.
“I got up every day trying to find something to eat and somewhere to sleep,” he says.
“It is survival mode.”
With the help of friends, he managed to get a flat and returned to nurse training but within months became unwell and developed night sweats.
“It became clear something was not right but I kept going. I kept trying,” he said.
“It became clear I couldn’t continue in that job.”
He also met his wife, Christine, who was training to be a physiotherapist, while in London.
In 1990, when she was pregnant with their first child, Mr Norval asked a doctor at St Thomas’ Hospital about the results of a previous blood test he had undergone - a moment he remembers in precise detail.
The doctor stood in the doorway and informed Mr Norval he had hepatitis C, a liver disease that causes cirrhosis and can be fatal, plus other active viruses.
“My first reaction was about my wife, my child - have I killed them?” recalls Mr Norval who was on his own.
“I asked what it meant and without missing a beat, the doctor said I could get liver cancer, liver decomposition, possibly other cancers like lymphoma but not to worry about it as it would not happen - and then he walked out of the room.”
His wife became the breadwinner but the couple still had to pay for childcare as Mr Norval was too ill to look after their daughter - and their son when he was born.
“I would make sure the kids got fed and I would try to put a meal out for Christine when she came in but that was the limit of my capacity,” he said.
His campaigning to uncover the truth started soon after his diagnosis and has involved trawling through hundreds of thousands of documents.
“A large chunk of my campaign work was carried out sitting in bed with three computers,” he said.
“I would have frequent naps while I was working through data and working out was missing.”
His research took him back to the 1940s when medical officers, carrying out investigations into cases of jaundice following the injection of blood products, highlighted the need for accurate records and speedy notification of cases.
Mr Norval is pleased that this was picked up by the infected blood scandal inquiry chairman. Sir Brian Langstaff, who noted despite ad hoc historical jaundice investigations from the 1940s onwards, there was no formal system of lookback for hepatitis cases.
“He has highlighted things which were well known from the war,” Mr Norval says.
“He has gone back 80 years.
“I wanted to push the time line back to where it belongs and ensure no one was excluded from the compensation package from an imaginary timeline which was known by science at the time.”
The same week the inquiry report was published and a compensation scheme announced, a General Election was called.
It will fall to the incoming government to take proceedings to the next stage.
Mr Norval vows: “It has been a long hard road and it is still not over.”
Tomorrow: Stigma, financial struggles and strained relationships - the impact of the infected blood scandal on the family.
