Bill Wright was diagnosed with hepatitis C in 1986 and spent many years campaigning for an inquiry, taking time out from advocacy as his health deteriorated but eventually going on to lead the charity.
Thousands of patients across the UK were infected with HIV and hepatitis C through contaminated blood products in the 1970s and 1980s.
About 2,400 people died in what has been labelled the worst treatment disaster in the history of the NHS – and is only now the subject of the Infected Blood Inquiry.
Mr Wright told the inquiry on Thursday that Scottish campaigners “had complete intransigence within Westminster, we were getting nowhere in London” and their voice “was not being heard”.
He called a petition to the newly devolved Scottish Parliament in 1999 “absolutely pivotal to what happened next in Scotland”, adding: “People were dying, already dying, people were in very ill health, they were starting to learn that the damage that hepatitis C was causing.”
Mr Wright said the only real condition to get in front of the petitions committee was having already spoken to the Scottish Government – but he said then Scottish health minister Susan Deacon “was saying no, an absolute no” to the suggestion of an inquiry.
However he said campaigners “were welcomed with open arms by that petitions committee, who then quite correctly passed on the proposal to the Scottish Parliament’s health committee”, to which campaigners gave evidence to “significant figures”.
Mr Wright added he never met Ms Deacon and said she refused requests to do so.
When asked by inquiry counsel Sarah Fraser-Butlin about his “quite considerable concerns” about a departmental investigation instead of a full inquiry, he said: “Well it was civil servants looking at themselves marking their own homework… It was a pretty pathetic attempt to get into the truth.”
A letter to Mr Wright read out at the inquiry said: “The minister (Ms Deacon) considers it an important general principle that the NHS should not pay compensation for non-negligent harm.
“She acknowledges that medical treatment often necessarily involves a balance of risks, she would like to repeat her expressions of sympathy for haemophiliacs infected through blood products, as indeed to all people who’ve suffered inadvertent harm through medical treatment.
“She also notes that the exercise failed to find evidence of any policy by haemophilia centre directors deliberately to mislead patients about the risks of hepatitis, she cannot deal with individual cases where a patient believes he or she was nevertheless misled.”
The letter made Mr Wright emotional, saying: “Repeat her expressions of sympathy? She was bloody patronising.”
Mr Wright also said despite Andy Kerr, a later Scottish health minister, rejecting further calls for an inquiry, they received support from Holyrood health committee members Nicola Sturgeon, John Swinney and Shona Robison.
He added: “Those three individuals were particularly critical because they’d seen the story during the period of opposition and then went on to be First Minister, finance minister and health minister.”
A letter from Mr Kerr was read out at the inquiry where he “concluded that an inquiry would be unlikely to uncover any new evidence or lead to significant lessons for the future”, saying it would “depend on the recollections of witnesses about events which took place 20 or more years ago” and “also place a major pressure on our blood transfusion service”.
Mr Wright said he would welcome it if Mr Kerr was asked to appear before inquiry chairman Sir Brian Langstaff to establish “if he still was of that opinion”.
Ms Fraser-Butlin read out a response from Mr Kerr to the statement, saying: “He’s disappointed at the characterisation of his position during this period on this very sensitive matter.
“The whole issue has been devastating for individuals and their loved ones.
“He reiterated his view that on the basis of the evidence and information before him, he didn’t believe that a public inquiry in Scotland would either uncover any new evidence or information that was relevant to the causes of the infection or lead to significant lessons for the future.”
The inquiry before Sir Brian continues.