“We have been overlooked, forgotten and let down - it’s as if we don’t exist,” St Neots man tells Infected Blood Inquiry

Tony Farrugia is fighting for compensation (Image: Archant)

Tony Farrugia was giving evidence at the Infected Blood Inquiry, in London, and during his testimony, which was powerful, but also harrowing, he described how he was "robbed of a childhood".

He told the inquiry, being led by Sir Brian Wagstaff, of seeing his father a few days before his death, in September 1986. Tony and his twin brother David had been taken into separate care homes when his father Barry, a haemophiliac, became ill and was unable to take care of them.

He said: "I was taken from the care home in Luton on a minibus to The London hospital and I remember sitting in the garden with my dad. He was very skinny and I was a bit shocked as he was over six feet tall. I had an ice cream and my dad asked me if he could have some because he had mouth ulcers and his mouth was sore. But a nurse refused to let him as she was worried about us sharing food. That was the last time I saw him."

Tony says it was only years later that he realised the significance of the incident when he learned more about how HIV was spread as his father's mouth was probably bleeding.

Mr Farrugia became visibly upset when he described how a few days after his visit he was taken aside by staff at the childrens' home and told his father had died.

He said many years later he spoke to his elder brother who told him that his dad, who wasn't told he was HIV positive for many months, was clear that he wouldn't have taken the Factor VIII blood clotting agent if he had known the risks. Barry Farrguia had a mild form of haemophilia that could easily have been managed without invasive treatment.

Medical records for Barry Furrugia were read out to the inquiry which paint a picture of a man who died not only a physically distressful death, but also of someone who suffered mentally and emotionally knowing he was dying.

The inquiry heard that Barry Furrugia was told in January, 1985 that he had the HIV virus, but medical records and correspondence between the consultants involved in his case show they knew months before this.

The inquiry heard that during the next year he suffered from black moods and depression, he lost weight, had warts on his hands, an enlarged spleen, was unable to sleep and talking to himself and confused.

He was re-admitted to hospital in early September, 1986 and told hospital staff he was "sad, because I know I am dying".

Tony told the inquiry the family were told that Barry was HIV positive and says newspaper headlines were screaming "Gay plague" and Rock Hudson has recently died from Aids so he joined in with the Aids jokes at school rather than admit the truth.

"It was only much later in 2010 when I obtained the medical records that I began to piece things together," he said.

He says now there was no emotional support for families, especially the children of the those who died.

"The staff at the childrens' home were lovely, but they weren't geared up for this. My life imploded when my dad died. One of my uncles stepped in as my father figure and then he died in 2002 after receiving contaminated blood and later a second uncle died in 2012. This has destroyed a whole arm of our family.

He hopes the inquiry will bring some closure and justice for him and the other families and says once the inquiry has concluded he wants to "live my life normally".

"The children of those who died are a lost generation, we have been overlooked, forgotten and let down. We are the 'can' that has been kicked down the road. We lost far more than our parents. It's as if we don't exist."

During his evidence on Friday morning, Mr Furrugia named five pharmaceutical companies, which he said the media were unwilling to make public due to the fear of being sued. He wants the companies to be named publicly and to take responsibility for their actions, particularly in reference to who knew what and when and why patients were not warned of the risks or told sooner they had contracted Hepatitis and HIV.

Mr Furrugia is core participant in the legal action which is looking into the deaths of almost 3,000 people who received contaminated blood in the 1970s /1980s. It is now known that blood donations were supplied by prisoners, drug addicts and prostitutes in the US who were paid for donated blood. Donations were mixed or pooled to make a blood clotting product call Factor VIII - which was used to treat haemophiliacs.

The inquiry, being led by Sir Brian Wagstaff, reopened on October 8 and started to hear more evidence from some of those who were infected, but in many cases, the families of the victims who are said be affected by the scandal. The inquiry is set to last for at least another two years and will delve into thousands of medical records and correspondence to find out if there was any delay or cover-up when health professionals realised there was a link to the source of donations.

A large number of witnesses are expected to be called, which will include not only victims who were infected with HIV and/or Hepatitis C but also former and current Government ministers, civil servants, doctors, company executives and family members.