A father who died as a result of a hepatitis C infection had his HIV diagnosis withheld from him by his doctor, an inquiry has heard.
Paul Summers died in 2008 aged 44 having been infected with the virus by contaminated blood products given to treat his haemophilia condition.
The Infected Blood Inquiry held in Cardiff was told Mr Summers had been diagnosed with HIV by 1985 at the latest, but he only learned of it after being examined by another doctor after moving home a year later.
A note written by doctor Professor Arthur Bloom – a consultant haematologist – in 1983, but which Mr Summers had never seen, said he had been given “the same batch” of Factor 8 blood to inject into himself as another patient whose name had been redacted.
Mr Summers’ father told the inquiry on Thursday it was “quite clear” the unnamed patient was a 23-year-old man from Cardiff who became the first UK haemophiliac to die of Aids in that same year.
Tony Summers, 83, said: “It was obviously known then he (Paul) had HIV, but we didn’t know and he didn’t know.
“That makes me more angry that the information was hidden from us for all those years.
“The fact they kept these records from us for such a long time wouldn’t have made a difference, but would have helped us understand what he was going through at that time.”
Mr Summers’ father said he had spent years trying to obtain his son’s medial records from the University Hospital of Wales, but the consultant’s letter only came to light last year, along with another from 1985 which showed Mr Summers had tested positive for HTLV-III – the name formerly used for HIV – which Mr Summers was never told about.
Prof Bloom – who died in 1992 – wrote to Mr Summers’ GP saying he would counsel his patient “regarding his mode of life etc” and added: “Can I suggest that this information be maintained in the strictest confidence.”
Mr Summers’ father said the first he or their family knew about the diagnosis was when his son moved to Plymouth in 1986 to study architecture, and during a check-up was asked how he was handling his HIV.
His father said: “It was the first Paul had heard of it. That’s how he discovered it.”
The doctor queried Mr Summers’ version of events with Prof Bloom, who wrote back saying: “Of course the young man has been counselled extensively and I have also advised him in some detail about sexual practices etc.”
Mr Summers’ father said: “I would challenge that extensively.
“Nobody had told him he was HIV positive and and it never occurred to him this is what they were talking about.”
Mr Summers met his wife, Monica, while studying in Plymouth, and they married in November 1989.
He had kept his diagnosis secret from everyone other than his family, but had flown to her native Boston in the United States to tell her he was HIV positive a year before they married.
Mrs Summers, who lives in the US with their adopted daughter Tia, 16, told the inquiry: “I can still clearly hear and feel how his words changed my life from that moment, and have continued to do so to the present.
“I was absolutely devastated my handsome, kind, gentle, talented man had become infected with this horrible virus.”
In the early 1990s Mr Summers, who was then working as a successful architect in Cardiff and Bristol, was told he had developed cirrhosis of the liver caused by hepatitis C, and began experiencing episodes of blacking out from the early 2000s.
He was put onto a waiting list for a liver transplant and eventually underwent the operation at the Queen Elizabeth Hospital in Birmingham on December 8, 2008, but he did not recover and died at the hospital on December 16.
In tears, Mrs Summers said: “They basically said we have shocked his heart 20 times and although it would come down to normal it could not maintain it and there wasn’t anything else they could do.”
She added: “This journey of grief and loss has left me physically, mentally and emotionally exhausted at times. The realisation there are still years ahead before we get the answers we all seek is still daunting to say the least.
“But my love for Paul and the determination to witness justice outweigh any overwhelming emotions.”