Two women whose husbands died and a man who kept his diagnosis of hepatitis C secret for 34 years have told an inquiry about the impact of the infected blood transfusions on their lives.
The Infected Blood Inquiry is investigating the scandal which saw patients given contaminated blood in the 1970s and 1980s – believed to have led to an estimated 2,400 deaths.
On Tuesday the first of four days of hearings in Cardiff heard from Karisa Jones, whose husband Geraint Jones suffered a “horrific death” in 2012 after being diagnosed with hepatitis C, which he unknowingly passed on to her before she was later cleared.
Mr Jones, a manager of a frozen food company, had his right leg crushed by a forklift truck in 1990, leading to him undergoing an amputation below the knee and having several emergency blood transfusions at Morriston Hospital in Swansea.
But in April 2012, they were put on alert when Mr Jones began vomiting blood.
The couple were summoned for a meeting with doctors and told a scan had shown Mr Jones had a “massive tumour” on his liver and had also contracted hepatitis C, giving him just months to live.
Their family were tested for the virus as a precaution, with only Mrs Jones coming back as having contracted it from her husband.
Mrs Jones, from Pontardawe, near Swansea, said: “He was yellow, his eyes were yellow. He was a skeleton of a man. He couldn’t eat. He was vomiting blood up all the time.
“I’ve never seen such a horrific death in all my life. He suffered. He fought and he suffered.”
Mr Jones died in his wife’s arms aged 50 on September 28, 2012, less than six months after he was diagnosed.
An inquest found he died from cirrhosis of the liver caused by hepatitis C.
Mrs Jones said she believed doctors missed opportunities to detect her infection, which would have also alerted them to her husband’s, when she attended hospital in the years before, including in 2000 when she showed flu-like symptoms and tests showed her liver readings were high.
Gerald Stone, 75, told the inquiry it was the first time he had spoken publicly about being infected with hepatitis, with him and his wife keeping it secret even from his own children for 34 years.
The retired administrator, who has needed blood transfusions to treat his haemophilia condition, said he believed he was infected in 1985 when he was first given a new batch of blood called Profilnine from the USA, having previously only been given blood from the UK.
He later tested positive for hepatitis C on three occasions between 1990 and 1992, but the results were kept from him and he was not diagnosed until 1993.
Mr Stone, from Tonyrefail, Rhondda Cynon Taff, said: “Until this day it’s never been made public. It’s distressing when you hear how people were ostracised in society. I had two young girls at the time in school. They could have been stopped playing with other children because of me, so I adopted the policy we would keep it to ourselves.
“It was kept confidential so I didn’t incur the indignity of being ostracised by members of the public.”
Mr Stone was cleared of the virus in 2016 and has since campaigned for compensation to be given to haemophiliacs who contracted hepatitis C from infected blood.
Sue Sparks said her husband, Les Sparks, who was also a haemophiliac, died aged 58 in March 1990 from HIV.
She said she believes he contracted the virus from a blood transfusion in 1984, and was unaware he had been screened and tested for HIV and AIDS before he was eventually diagnosed in September 1985.
Mrs Sparkes said: “We would have been interested if something like that had gone on because we were trying for a baby and trying to get pregnant.”
She added: “As far as he was concerned he was a murderer and he had something inside him which could kill people and he would not go back for treatment again.”
Mrs Sparkes said the ordeal had “shattered” the lives of her family, and had left her distant from her two now adult sons.
She said: “The children lost a father. He’s missed out on his sons’ weddings, missed out on having a granddaughter.
“It did spoil my relationship with my children. It’s not as strong as a lot of people have with their children, and I don’t think it will ever be because of what I put them through when they were growing up, because I just couldn’t cope with it all.
“It shattered our lives completely and I’d like to thank everyone here for doing this because I think it is important for us all.”
The inquiry is chaired by former High Court judge Sir Brian Langstaff, who has promised to put people at the heart of the probe.
He told the hearing the scandal was “the greatest treatment disaster in the history of the NHS”.
Sir Brian said: “We do not have the luxury of much time, for people continue to suffer and die. But those who are not heard orally during this week, and those in other centres who would like to be heard, but for whom there is no time for them to speak orally, will be heard.”
Two previous inquiries have been branded a whitewash by campaigners.
Previous witness hearings have taken place in London, Belfast, Leeds and Glasgow.