‘My brother would want this injustice exposed’
Dot Eden and her family did not know that her brother had been a victim of the contaminated blood scandal until after his death. Fred, who had severe haemophilia, died from liver cancer in January 2000 at the age of 57 as a result of contracting hepatitis C through contaminated blood products.
It was only when Fred’s doctor insisted that this be recorded on his death certificate that Dot and her family realised the truth. Since then Dot, along with her brother’s daughter and widow, have found out as much as they could about Fred’s medical history and have tried to piece together what happened.
Even now, she does not know how much her brother was told about the cause of his condition. Dot has travelled from her home in the Midlands to attend some inquiry hearings in London, sometimes to support friends giving evidence, and follows proceedings online when she can.
She said: “I feel involved in the inquiry. I do feel Freddie would want this injustice to be exposed.
“Although everybody’s circumstances are different there is a common thread in the evidence. People weren’t told, they carried on being given treatment when they knew it was infected – all these things that are coming out make me extremely angry.”
“I want them to stop lying and tell the truth. I want to have the acknowledgement that somebody made a catastrophic mistake.”Dot
Born in 1942, Fred spent much of his childhood in bed or in hospital due to bleeds, which was normal family life for Dot. Fred was sports-mad and often got injuries because he was determined to be involved. He was an adult when factor VIII treatment became available and Dot remembers the “amazing” impact it had on his quality of life.
When the contaminated blood scandal became public in the mid-1980s, Fred reassured his family that he did not have HIV. Dot believes he did not know then about his hepatitis C but would have wanted to shield those he loved from knowing about it.
Dot said: “Freddie was just an amazing guy. He never let haemophilia dominate who he was.
“Freddie loved his wife and daughter and would have done anything to protect them. He worked really hard to do well for himself and was loved and respected by everyone. He should not have died the way he did.”
Although following the inquiry has been harrowing and brought back very difficult memories, Dot has also appreciated meeting people who have had similar experiences.
She said: “The inquiry is there for all the people that have died and their families. Peoples’ lives have been blown apart by this and it does give people a chance to voice that. It’s never going to make it better, but for me I think it’s the fact that you can listen and you can share experiences without prejudice.”
Dot says she has been impressed by the “fair” approach of inquiry chair, Sir Brian Langstaff, but is clear about what she believes must come out of his investigations.
She said: “I want them to stop lying and tell the truth. I want to have the acknowledgement that somebody made a catastrophic mistake.
“I can’t forgive the fact that some medical people knew they had contaminated products and they still kept giving them to people. I can’t get that out of my head. I want to make sure this could never happen again.”