‘Catastrophe. Broken families. Grief. Loss. Despair.”
Bill Wright wearily lists the fall-out of a 30-year-long tragedy, one so overwhelming that even now, just 24 hours before what is hoped will be the beginning of the end, he still struggles to find adequate words to sum up the scale of it. So he concludes with just two. “A disaster,” he says simply.
We will never get the complete truth because too many people have died while waiting for the inquiry,”
A mild haemophiliac, he received a single dose of a blood product known as Factor VIII in 1986. What was meant to help keep him and many other haemophiliacs healthy was contaminated with hepatitis C.
They were far from alone – for exactly the same was also happening to thousands of people across Britain.
Women who received contaminated blood after childbirth, men who needed transfusions after an accident, sick children.
And in Edinburgh, one particular group of haemophiliacs would have to wait years to discover the blood product given to treat them carried what at the time was probably the most feared infection of them all – HIV.
Tomorrow, three decades of calling for answers to a national scandal that left countless people infected with either HIV or hepatitis C from contaminated blood should, in theory at least, reach a conclusion.
The £12 million Penrose Inquiry, set up in 2008 by the Scottish Parliament to investigate cases of HIV and hepatitis C acquired as a result of Scottish NHS treatments, is at last due to release its final report into what went wrong and, crucially, who was responsible.
The hope is for answers. But for Bill – and in particular a group of haemophiliac patients known as the Edinburgh cohort who maintain they were deliberately and secretly given HIV-contaminated blood as part of a medical study – the great worry is there will only be even more questions.
“We will never get the complete truth because too many people have died while waiting for the inquiry,” reflects Bill, who received the contaminated blood during treatment at Edinburgh Royal Infirmary.
“We want to have light shed on how on earth this terrible disaster happened.
“People want lessons to be learned. They don’t want anything like this to happen again. They don’t want people to go through what they have been through.”
In the Old Town offices of Haemophilia Scotland, not far from the site of the old Edinburgh Royal Infirmary, pale and a little bit shaky on his feet thanks to a myriad of health problems – strokes, bowel cancer, blindness are the price he’s already paid in this “disaster” – 45-year-old George* is more blunt.
“At the end of the day, what kind of justice am I going to get?,” he whispers. “I’m blind, severely disabled, I’ve had bowel cancer.
“My relationships were destroyed. I was terrified that someone would find out.
“I was young, enthusiastic, I was achieving things, running my own business. I was having the time of my life. And it was destroyed.
“Will the inquiry give me answers? I don’t trust any of them any more.”
He was 14 years old in 1984 when he was given a dose of Factor VIII blood product which had been produced at the Protein Fractionation Centre in Liberton.
HIV infection from blood products was known to be a risk at the time, but haemophiliac patients like George – who doesn’t want to be identified – were told the chances were minimal, that Scottish produced Factor VIII was “a quality product”.
“There was a lot of stuff at the time about HIV, horrible things,” he adds. “You have to remember what it was like then, a quarter of the population was going to die from it, if you shook hands with someone you’d get it.
“But the general feeling was that because blood products were locally made and not commercially bought, there wasn’t much for us to worry about.”
Seven years later, George arrived for his routine check-up expecting a quick examination and brief chat about his treatment. Instead, he received devastating news delivered by consultant Professor Christopher Ludlam.
“I was surprised. He was on his own, and that should have made me suspicious,” he recalls.
“There was an awkward silence. He cleared his throat and said ‘something has come to my attention that I need to discuss with you. It appears you were one of the unfortunates that has become infected’. He said ‘You will be dead within a year’.
“It wasn’t quite what I expected from a routine hospital appointment,” he says. “I remember trying to stifle the tears.
“I’d seen all these famous people dying from this horrific condition. Plus the shame, this was something that drug addicts got, it was something that homosexuals got. I thought ‘what will happen if this comes out? People will think I’m either a drug addict or homosexual’.”
Reeling from shock, he was handed papers to sign which would release an ex gratia payment.
“I knew there should be witnesses to all of this, but the paperwork was already signed by the other people. So in a rather strained state, I signed three documents to accept the ex gratia payment that meant my life was worth £23,500.
“It was just one of the unfortunate things. You’re a haemophiliac and you are one of the unfortunate ones.”
Many thousands of patients across Britain received blood products tainted with hepatitis C as part of routine medical treatments. How many is unclear. As Charles Gore of The Hepatitis C Trust points out: “It is entirely possible that people may have had contaminated blood and not know they have hepatitis C.”
Around 530 Scottish haemophiliacs and patients with bleeding disorders were infected with either hepatitis C or HIV contaminated products. Of that number, approximately 300 have died.
Some were given blood bought commercially from America where it had been sourced from prisoners.
However, the Edinburgh cohort cases – thought to number around 18 – were given blood believed to have come from a single HIV positive donor and processed at the Liberton unit.
They were infected in 1984 but not told of their HIV status for several years, placing others around them at high risk of infection.
It has led some like George and fellow Edinburgh cohort campaigner Robert Mackie, who was not told of his infection until 1987, to claim the tainted blood may have been given to them as part of a medical study into HIV which was carried out without their knowledge or consent.
“No-one knew they were involved in a study,” says George. “I believe I was used for research. I was a guinea pig.”
He was 21 when he learned he was HIV positive – at a time when the virus was shrouded in misconception and fear.
So ashamed of what family and friends might think, he kept the news a secret, shunning even his parents in a bid to protect them from what he believed was the shame of Aids.
It would be years later, as calls for a national inquiry into what happened gained momentum, before he could bring himself to speak to anyone of what he was going through.
It’s the time that has passed and the bitter battle for their voices to be heard that makes tomorrow’s findings even more emotional, according to Bill.
The inquiry started hearing evidence in 2009. But the evidence has been blighted by missing documents and witnesses who struggled to recall events and, sadly, some who had passed away before having the chance to tell their story.
“It’s a very emotional time,” says Bill. “It’s a day we are approaching with considerable trepidation. We have waited a very long time for this. We have been through a very long, very dark and grim tunnel.
“It’s difficult to believe that after a six-year-long inquiry, it’s not going to come up with something substantial.
“But do we think the whole truth will ever come out? No.
“Different people want different things but there are common threads: justice and truth.”
What happened, he adds simply, was a disaster.
“The scale is as big as any transport disaster, any football stadium disaster,” Bill claims.
“People just want to finally find out what really happened.”
‘This is not about compensation, it is about accountability’
Thousands of people in the UK received blood contaminated with potentially deadly viruses during the late Seventies and Eighties.
Much of the infected blood used was imported from the United States.
Many patients were given it as part of routine treatment for bleeding disorders such as haemophilia.
Others received contaminated blood in transfusions given during medical emergencies.
A possible link had been established between Aids and blood transfusions in December 1982.
However, it took a further four years before safer, heat-treated products were routinely used in Britain.
Charles Gore of the Hepatitis C Trust says the scale of the tragedy may never be known.
“We can tell how many haemophiliacs were affected because their health was known. But there was an unknown number of blood transfusions in that time.
“And there are people who will have had infected blood who don’t know even to this day that it was infected.”
Former Fettes College teacher Gill Fyffe, who has written about the issue in a new book Lifeblood, was given hepatitis C-contaminated blood after the birth of her daughter in 1988.
She was notified in a letter seven years later – once the statutory period of limitations for medical negligence claims had run out.
She said: “The Penrose Inquiry is about something more important than compensation. It is about accountability.
“To the thousands of people whose lives have been ruined by careless error, anything less is an insult.”