‘So many similar experiences add up to a powerful voice’
The Infected Blood Inquiry has taken Barry back to very painful times, but he is determined that the stories of his brother and sister-in-law, who died as a result of the contaminated blood scandal, are heard.
For Barry, who was infected with hepatitis C, it is more important he tells of their experiences than his own. Both Barry and his younger brother had severe haemophilia A. Barry’s brother was infected with hepatitis C and HIV and died in 1991 at the age of 30, knowing he had unwittingly infected his wife who also died not long afterwards.
Barry said: “I want to speak for my dead brother and his wife. I’ve had a fantastic life, all things considered, but two people I loved dearly who should have had equally good lives were extinguished at the ages of 30 and 31 and that’s the tragedy that I want to get out there.”
Attending the hearings has been difficult, but Barry believes that listening to other peoples’ experiences of loss has also helped him. He said: “The personal testimonies have re-set my personal benchmark.
Previously, on bad days you can feel you’re the worst affected person but having heard stories that are 10 times worse than mine it makes you realise others have suffered even more, and such a lot of us share so many similar experiences. Together it adds up to a powerful voice.
“At the inquiry I’ve gone from chatting to people to blubbing my head off in five minutes flat. A witness says something, and it takes me straight back there. It’s been very emotional.”
The investigative phase of the inquiry, which is expected to involve cross-examination of government departments, organisations and individuals involved with haemophilia care and treatment, will be the part on which Barry judges Inquiry chair Sir Brian Langstaff and his team.
Clinicians at the main centres at the time of the contaminated blood scandal will be giving evidence in June 2020, but no other details have yet been released.
Barry said: “I’m glad it’s coming to the end of the “beginning” of the inquiry. The next stage will be the test for me. I can imagine the inquiry is being swamped with irrelevant information by the Government and the NHS and pharma, but hopefully they will find the nuggets. It’s going to come down to forensic studies of documents and holding people to dates of when information was available and should have been known and taken into consideration by decision makers and policy makers.
“I’ve never had a view about the outcome of the inquiry other than I want it to expose what has happened. If people are incompetent or have acted unlawfully, they should get censured, sacked or punished. If it’s not that, then they need to learn their lessons so it cannot happen again.”
“I’d like those responsible to say that they are incredibly sorry that my brother and his wife lost their lives 60 years before they should have done because of their incompetence or negligence.”Barry
Like so many others, time is running out for Barry and his family. His elderly mother has never received an explanation of how and why her son and daughter-in-law died and, as her health fades, it is possible that she never will.
Barry said: “My mum is 87 and most of the fight has gone out of her. The inquiry and its findings may only be for me and my surviving brother by the time it is concluded.”
Barry Flynn is a trustee and former chair of the board of trustees of The Haemophilia Society. This is his personal view of how the Infected Blood Inquiry is progressing.