Dad should not have died. Haemophilia is not a death sentence. It was the radical treatment he received for it which should have helped him that killed him.”
Paula Wakefield’s dad Russell Carbery died at the age of just 39 when Paula was 13 and her brother Stuart was 10.
Russell was one of thousands of haemophiliacs and other patients infected with hepatitis C and HIV following NHS treatment with contaminated blood products.
At least 2,400 people have already died while others are struggling with the life threatening illnesses.
And even though Russell was infected through no fault of his own, Paula has learned he and her mother Anne received death threats through the post due to the stigma surrounding HIV at the time.
A group of parents even went to see the headteacher of the school she and her brother attended saying they didn’t want them there.
Paula, 38, who lives in Astley, near Wigan, says: “My dad had the inherited blood disorder haemophilia and through contaminated blood products meant to treat the condition, he contracted HIV and hepatitis B and C.
“It was the early 1980s when my dad first found out he had HIV and he only found out he had hepatitis C shortly before he died. He was getting ill and suffering but no one was diagnosing him.”
Paula said: “I remember my dad started taking drugs called AZT and after hearing about these on the news, I realised he must have HIV.
“There was a real stigma about HIV and haemophilia at the time and although my mum and dad tried to protect me and my brother from it all, I later discovered my parents received hate mail and death threats.
“I didn’t understand too much at the time but I was aware I should not talk about my dad having HIV.”
Russell, who used to work in local government before having to take medical retirement, deteriorated rapidly and went into a coma.
Paula recalls: “My dad became very jaundiced and lost lots of weight and became very gaunt looking.
“The whole family was heartbroken when he died.”
Paula, who is married to Chris and has a six-year-old daughter Holly, says when he was alive, her dad worried about the future and providing for his family and became involved with campaign groups such as TaintedBlood to fight for justice for those affected by the contaminated blood scandal.
Paula says: “I once went to Westminister with my dad as part of the campaign.
“After my dad died, my mum and I were still active with the campaign groups and attended protests. However, it all got too much for my mum as she was re-living the heartache and felt like she was constantly going to funerals in her mid-30s.
“In the last few years, I have become involved with the campaigning again with all the information about cover-ups coming out and I want to get justice for my dad and all the other people affected.”
Paula says her mum was robbed of her soulmate and has never got over it.
When Paula got married, her brother Stuart gave her away in the place of her dad.
Paula admits for a long time, she was put off having children as she knew she was a carrier of haemophilia. Paula explains: “My memories of my dad having haemophilia and what happened to him were so horrific, it did put me off having children for a long time.
“It was only after I turned 30 that I went to a genetic clinic to find out what was involved and realised the treatment for haemophilia is now completely different.”
The implications of her dad’s illness and his death have been far reaching for the family. Paula explains: “My dad could not work as he became too ill and he could not have life insurance.
“We lost our family home and had to go into council accommodation because he could not pay the mortgage.
“My dad was very much a comedian and loved making people laugh but my mum says he became very depressed after finding out he had HIV. However, it is the hepatitis C that is killing most of the affected. It only started coming out about the hepatitis C later.”
The UK relied on blood product imports from the US, many of which were manufactured from blood plasma from thousands of paid donors including from high risk people such as prisoners and drug addicts.
The Factor VIII treatment used by haemophiliacs was affected by the contaminated blood. Campaigners say there is evidence the health service knew the blood was contaminated but carried on giving it and there have been allegations of a cover-up.
Paula has welcomed news that an inquiry into the scandal will finally be held but says it needs to be done in a timely manner for the sake of the victims who are still alive.
Paula says: “We feel my dad was murdered by the state and it has affected our whole lives.”