A father infected with hepatitis C through contaminated blood products was not told about his diagnosis for more than a year because his GP did not “have the heart” to tell him, an inquiry has heard.
Paul David Le Bourn contracted the virus through blood transfusions after having his leg amputated in 1982 following a serious motorbike crash.
Doctors discovered the social worker was infected in 1997 through screening for a potential lung transplant after he developed emphysema through smoking.
His wife Penelope Rae told the Infected Blood Inquiry the couple did not hear about the infection until early 1999 after chasing the family GP for lung test results.
She told the hearing on Thursday: “They tried to defend the fact they hadn’t told him, basically, which I think is quite incredible. He was the family GP and he was putting Paul at risk, absolutely.”
In a statement Rae said the GP, who cannot be named, did not think Le Bourn was “emotionally ready to hear” his diagnosis, the inquiry heard.
Rae added: “We didn’t contract anything and that’s incredible but if we had, imagine what Paul would have felt.
“It just seems really, really unethical and unfair. I’m amazed that they thought he couldn’t have coped.”
In a letter dated November 1998, the GP said he was told a year beforehand by Papworth Hospital of the hepatitis C diagnosis and wrote he was asked to “bring this to Paul’s attention along with the necessary counselling”.
But the GP added: “The reality has been that Paul has not returned to my surgery until now. He had a good deal to tell me and I was pleased to find him in a fairly positive frame of mind. I therefore did not have the heart to add to his worries.”
The GP has been asked to respond to the documents and the family statements, the inquiry heard.
Le Bourn, who died aged 63 in 2013, did not initially get hepatitis treatment because of potential complications with his emphysema - but eventually he had two unsuccessful rounds of treatment beginning in 2006, the inquiry heard.
Rae told the inquiry: “If they could start it in 2006 why couldn’t they have started it earlier when his lung condition wasn’t nearly as bad?”
Le Bourn degenerated physically and mentally throughout his illness to the point where he did not recognise his daughter Bronwyn.
She told the inquiry through tears: “It was incredibly difficult. His reasoning completely went out the window.
“He had moments where his memory would go and I would return home from school and he would have no idea who I was.
“He could become very violent and aggressive through no fault of his own, but I didn’t understand why he was doing those things.”
The contaminated blood scandal has been labelled the worst treatment disaster in the history of the NHS.
Thousands of patients were infected with HIV and hepatitis C through contaminated blood products in the 1970s and 1980s, and around 2,400 people died.
Hepatitis C is currently one of the leading causes of death globally, accounting for more than 1.3 million deaths per year – as many as HIV, TB and malaria.
The virus infects the liver and can cause serious and potentially life-threatening damage. It is usually spread through blood-to-blood contact and can be passed by sharing unsterilised needles, razors or toothbrushes.
The Infected Blood Inquiry is sitting at Fleetbank House in central London, led by former High Court judge Sir Brian Langstaff.