Louisa Paintin’s dad Fred was once described as “miracle boy”, after he survived a revolutionary procedure of having a blood transfusion while hooked to a live donor.
It makes it even more painfully ironic for his family that another groundbreaking treatment for his haemophilia some years later would actually lead to his death.
Fred Paintin, who lived in the village of Ilmington, Warwickshire, was a severe haemophiliac – which means he suffered from an inherited genetic disorder that impairs the body’s ability to make blood clots to stop bleeding.
His 44-year-old daughter, who lives in Balne, near Doncaster, is the only child of Fred, who was married to Barbara just short of 30 years when he died in January 2000 at the age of 57.
“My dad’s older brother Albert was also a haemophiliac and died at the age of 12 when he was having an operation on his elbow after suffering bleeding around the joint,” Louisa told HuffPost UK.
“He bled to death on the operating table.
“This happened when my dad was around six, so when my dad needed his appendix taken out a few years later, his parents were understandably concerned.
“However, he had the surgery done at Warwick Hospital with this pioneering technique with a live donor and he made it through the operation and was hailed as a miracle boy.”
Growing up as a haemophiliac in the days when the only real treatment was bedrest, Louisa said her aunt Dot, her dad’s only surviving sibling, remembers how he wore calipers to limit the stress on his joints and how she used to bandage his legs every day, turning it into a game.
“My dad was born with haemophilia so did not know any different and made the best of it so it was not all doom and gloom,” she said.
“People in the village did not bat an eyelid. They called my dad ‘Our Freddie’ and looked out for him.
“My dad was a very positive person and just got on with life. He loved cricket but could not play sports so he umpired – but then he would suffer bleeds when the ball hit him.”
Fred’s life changed dramatically when he started to receive Factor VIII treatment, a protein to help his blood clot, which he could administer itself at home.
But he had no idea the life changing treatment was made from blood imported from America, where people were paid for blood donations and it came from risky sources such as prisoners and drug addicts, who had viruses including HIV and hepatitis C.
Louisa said: “When my dad got Factor VIII, he thought it was a lifeline. But he did not realise it would ultimately destroy his life.
“My parents discovered my dad had been infected with hepatitis C as a result of the contaminated blood when I was about three.
“But I did not really find out about it until much later, as my mum and dad did their best to protect me.
“I only really became aware of things when my dad became really sick about six months before he died.”
Louisa, who went to Leeds University where she studied art and education, was 24 when her dad died. She had not long achieved her degree and was working in social inclusion for a local authority in Bradford.
“The hepatitis C affected my dad’s liver so much, he was put on the list for a liver transplant and we were given bleepers and were desperately awaiting the call,” she said.
“However, doctors then did a further scan and realised his liver was too badly damaged and that he had liver cancer and was no longer suitable as a candidate for transplant.
“But dad did not tell me and mum at first, as he wanted to shield us. He told us things had improved so he no longer needed a transplant – even though he knew he was dying. He only initially confided the truth to his sister.”
She added: “He deteriorated very quickly and died a horrible death at the age of 57.
“We managed to get infected blood put on his death certificate as a cause of death.
“The impact on us was indescribable. I channelled my grief into anger and the campaign and my mum just went to bits.”
Louisa described how she began searching online for people who had been through a similar experience to her dad and that’s when she discovered campaign groups including Tainted Blood.
“I became obsessed and began discovered more about the scandal,” she said.
“Different things started falling into place and I began finding out about the cover-ups.
“I drove myself mad with it – literally.”
In 2005, Louisa, who was living in Leeds and managing arts and museums in North Yorkshire at the time, suffered a complete breakdown.
“I had suffered a meltdown a couple of years earlier and was diagnosed with bipolar,” she said.
“The doctor told me that I had probably been bipolar all my life, but that losing my dad had triggered it.
“I soldiered on for a while but did not really deal with it and ended up having a total breakdown.
“It was really bad. I was in mania and was registered with the mental health team and they were coming out to me three times a week to make sure I was taking my medication.
“I had newspapers on the windows of my home as I could not have light coming in and I did not want to leave the house.
“This went on for five years and in many ways, it is still going on, but I have learnt to manage it.”
Louisa said her mental health issues all stem from losing her dad in such a terrible and needless way and then discovering alleged cover-ups, which led to contaminated blood products being used after it was discovered they were infected.
““I have anger in me that will never dissipate. I trust no one and question everything”
“All that I have been through stems from losing my dad in such a horrific way and then finding out the institutions you are supposed to trust like the government and the medical profession have let you down,” she added.
“I just did not trust anyone at all. It was the cover-up and the under-handedness of it all which made me feel complete mistrust of everyone.
“I felt angry at everyone. I was even angry at my parents for keeping things from me, even though I knew that was unfair as they were only doing it to protect me.
“I have anger in me that will never dissipate. I trust no one and question everything.”
Louisa was extremely close to her dad and describes him as a “quiet and measured man who didn’t want to make a fuss about any of this.”
Louisa said her mum Barbara even somewhat prophetically called the factory in the USA where the Factor VIII was made to question them about its safety when she heard about the new “wonder” treatment.
“Interestingly enough, by the time my dad returned back home from work that evening, he had received a call from the Oxford Haemophilia Centre asking why his wife had ‘making trouble’,” she said.
“Dad, unaware that mum had called, made his apologies and told them it would have been in all innocence.
“He calmly told mum not to make a fuss.”
Louisa said she is fiercely angry after seeing the father she loved die in such a distressing way and then have no-one held accountable for what happened.
“Being an only child meant I was very close to my dad. He was very supportive and was so proud of me as I was the first family member to go to university,” she added.
“He would do anything for anyone and was very respected in the community.
“Towards the end, he was very scared but even then, he hid it from mum and I. He just got on with things and dealt with them.”
Even though Louisa has suffered through losing her dad, she is quick to point out her suffering is marginal compared to those who were actually infected with the tainted blood.
“It just shows the trickling down of this scandal will affect generations to come”
“I have been affected but not infected and I feel that compared to those who have been infected with viruses as a result of the contaminated blood, what I have been through is nothing,” she told HuffPost.
“But what happened to me is still an outcome of what happened.
“And I firmly believe there are many other children of infected victims who are just lost and have endured ramifications to their mental health and relationships.
“It is good that many of us have found each other through campaign groups and can support each other.
“It just shows the trickling down of this scandal will affect generations to come.”
Louisa describes herself as going from “being very successful” to “being jobless, unemployable and a mess.”
She has not had a job since having her breakdown and has devoted her energies to the contaminated blood campaign.
Louisa is also passionate about baking – and has used her skill to spread the message about the blood scandal by baking blood-themed cakes and biscuits.
Louisa also collates and puts together photos, artwork and poetry for Tainted Blood, examples of which are being displayed in one of the rooms near where the inquiry, which began this week, is being held.
“As the inquiry will be very much evidence-led and quite intensive and complicated, we did not want the human aspect of it to be lost,” she said.
“So the display features a lot of photographs and poems people have written and artwork.
“We wanted it to be about us as people rather than an issue.”
Louisa said she is “cautiously optimistic” about the inquiry as without it, people wouldn’t have any hope.
“I hope the inquiry translates as it should but I still have this massive mistrust of institutions,” she added.
“Campaigners have been demonised for wanting this inquiry and we just want the truth.
“We want justice and for people to be held accountable.”