‘I have got a death sentence hanging over my head ‘ - Victim of contaminated blood scandal speaks out before giving testimony
PUBLISHED: 14:04 24 September 2018 | UPDATED: 14:13 24 September 2018
A Norfolk victim of the contaminated blood scandal will give evidence tomorrow into the inquiry into the treatment of thousands of people in the 1970s and 1980s.
The inquiry into the contaminated blood scandal which left at least 2,400 people dead began today (Monday).
It will look at those who were given blood products infected with hepatitis viruses and HIV, and the impact this had on their families.
Sir Brian Langstaff, chairman of the inquiry, previously said it would examine whether there had been an attempt to cover up the scandal.
The start of the inquiry was a day many victims thought they would never see, said Des Collins, of Collins Solicitors, which represents more than 800 victims, their families and eight campaign groups.
This view was echoed by Norfolk victim Michelle Tolley, from Sparham, who last month said: “I just hope we are still alive when it all ends. From July last year to July this year 96 people have died in the UK.”
Today she said: “Anyone who may be responsible... they need to be held accountable and prosecuted if needs be - I strongly believe that.”
“People need to know that this tragedy happened,” she said. “This is the worst tragedy in the history of the NHS and it must never ever happen again, absolutely never.”
The 53-year-old was infected following a blood transfusion after the birth of her child in 1987 and another in 1991 - she eventually found out in 2015 that she had Hepatitis C.
Describing how she wakes up every day feeling as though she is “waiting to die”, she said she thought the start of the inquiry is a day that would never come, and worries she might not see it end.
Feeling “very positive” about the inquiry and that prosecutions could be achieved, she added: “I have great, great faith that they will leave no stone unturned.”
Mrs Tolley said the scandal has stolen her life, and that she fears a liver scan next month may reveal she has cancer.
“I feel we have been given a death sentence without committing any crime. I have got a death sentence hanging over my head,” she said
“My future has been lost, my last 31 years have been cruelly snatched away from me.
“It has a knock-on effect to the affected people - my husband, my children, my grandchildren, my colleagues - that ripple effect really is much wider.
“We need the general public to know and understand exactly what has happened and why it happened.”
At least two Norfolk victims died before the inquiry began.
Annie Walker, from Norwich, died in 2016. She contracted hepatitis C (hep C) from an otherwise routine blood transfusion at the age of just 19, which then caused cirrhosis of her liver and led to cancer in 2014.
And Bob Brennan from Thompson, near Watton, died last year. The formerly fit and healthy general manager learned he had contracted hepatitis C from a transfusion using contaminated blood for a damaged oesophagus at St Bartholomew’s Hospital, London, in 1988.
It was first revealed to this newspaper last year by the prime minister Theresa May that the inquiry would not be conducted by the Department of Health - one key concern for campaigners.
Mrs Tolley will give evidence tomorrow, without legal representation.
She was only diagnosed with Hepatitis C in 2015, after living with the disease for years, but was infected with contaminated blood during a transfusion in 1987.
This morning testimonies came from others infected and affected by the contaminated blood scandal, spelling out the life-changing impact of it.
Emotional video accounts lasting more than half an hour described the toll on all aspects of their lives as they spoke to the camera.
One widow revealed how her husband John, who was a severe haemophiliac, died of Aids in 1994 and also had Hepatitis C.
“I feel we have been treated very badly,” she said. “Nobody has listened to us over the years, it is like knocking on a door and it never opening.”
She told how the news completely changed their marriage, with life becoming “very difficult” as a result.
Holding a piece of paper, one victim, who is a haemophiliac, said he was infected by contaminated Factor VIII in the early 1980s.
The man said he found out “in the most bizarre way”.
He said he was informed in a letter sent to his address from his haematology department which notified him that he had tested positive for the “Aids associated virus”.
He added: “You’ve only got to use your imagination to know what implication that would have been for the family if that had gone to the wrong address.
“If it hadn’t have gone at all to me, I could have infected my wife. I was very angry that they sent it in a letter, not even in a recorded letter.
“They didn’t even have the decency to tell me to my face.”
With her identity hidden, one woman said she became infected with HIV through her husband who was a haemophiliac, and who had been given contaminated blood.
She said when they found out they were left stunned and devastated.
“This was the mid-1980s and the climate of fear, discrimination and stigma associated with HIV and Aids was horrendous,” she added.
“We coped the best we could. We were silenced, and we kept quiet.”
One man said he was given Factor VIII blood products as an eight-year-old child for a swollen knee, and was misdiagnosed with haemophilia.
It was not until he was 43 years old that he found out he had been infected with Hepatitis C.
“When they told me what they had done to me, I stood at a motorway bridge to jump off it - basically, that has been my life ever since,” he added.
“I lost everything, I lost my whole life the day I found out - everything ended.”
After a poem called Making A Difference was read by Lemn Sissay, those infected or affected by the scandal approached the front of the stage clutching tiny bottles.
Each one, that was clear and clinical in appearance, contained a private and personal message, and was placed into a wire shelving unit in front of the audience.
One woman could be seen kissing her miniature container before placing it down.