Infected Blood Inquiry: 'My husband was given a virus that killed him'

  • Rachel Hepworth spoke to Pe Rae and her daughter Bronnie at their home in Lyndhurst

"I'm so lucky to have known such a brilliant man," says Bronnie Rae- Le Bourn, "I just wish I could have had more time to know him better."

Bronnie was just four when her father was diagnosed with Hepatitis C in the early 1990's.

His doctors knew, but took over a year to tell him, worried that the diagnosis might stress him out, as he was already suffering from unrelated emphysema.

Paul had unknowingly been given infected blood years earlier, after a motorbike crash in which he'd lost a leg.

Paul and his daughter Bronnie as a toddler

His wife Penelope, known as Pe, first met Paul in Southampton where he was volunteering with homeless people- "He was tall, dark, handsome and totally gorgeous" she says.

Paul ended up qualifying as a social worker but in 1981 he was involved in a road accident prompting an emergency blood transfusion and ultimately having his leg amputated.

But it wasn't until a decade later that he found out that he had been infected with Hepatitis C when he was being assessed for a lung transplant.

Paul and Pe were together for over 30 years

"It was a huge shock", says Pe. "The GP didn't want to tell us, later admitting that he didn't know what Hep C was, and he thought Paul was too stressed from the lung transplant assessment to be told about the infection."

Once they were told, life changed forever.

Hepatitis C is an infectious disease so the family had to ensure it couldn't be transmitted to them or to others.

In their own words: Pe and Bronnie on the trauma of losing Paul and how they want to honour his memory.

"All the normal things that you do, normal life, changed completely," says Pe. "It was 'right get the gloves on, get the gown on' that sort of thing."

They couldn't be intimate. Any plans for a larger family were completely ruled out. "That was one of the biggest things for me," says Pe. "We desperately wanted more children but we couldn't risk it.

"We had to get Bronnie tested and we couldn't go through that again with another child.

"Children at her school were foul to her, foul", says Pe. "You know, 'your father's disabled, he's ill, he should be dead, he's got an infectious disease' horrible, truly horrible for her."

But things would get even worse.

Bronnie and Pe at the family home in Lyndhurst

Before Paul could have a lung transplant he needed to clear his Hepatitis C.

He was finally referred to a hepatologist at Southampton General and treated with interferon and ribavirin.

"They gave him two six month courses of treatment, and that was the most horrendousexperience I have ever been through apart from his death" says Pe.

"It was even worse for him, basically the treatment was like going through hell.

"It was a horrible couple of years and he never mentally recovered from it, it also affected my daughter really badly.

The treatment, a cocktail of toxic drugs, changed his personality completely.

"It turned him from great chap to be around to somebody who was just angry all the time depressed, angry, aggressive.

"I just you couldn't cope. You didn't know what you were coming home to every day."

"What got you through that time?" I ask. "Oh he did - and Bron - but of course it doesn't stop your love for them so you do whatever you need to do."

Pe and Paul on his last birthday, three months before he died

Bronnie was sent away to school to spare her from the worst of her father's symptoms, which persisted even after he stopped the treatment.

He had two rounds on Interferon and Ribaravin, the maximum allowed, but sadly it didn't work and he was left with terminal liver damage.

Unable to have the lung transplant, Paul relied on oxygen, and continued to decline until his death in 2013.

"Sometimes he couldn’t string a sentence together that made sense" says Pe.

"We had to say goodbye so many times - but he was strong as an ox and pulled through even when the doctor didn’t expect it.

"I promised to do everything I could for him.

"At his eulogy, I said that somebody had killed him, intentionally or not, and made the last few years of his life horrendous.

Sir Brian Langstaff is leading the Infected Blood Inquiry

Participating in the Infected Blood Inquiry has helped the family.

"It's been hard to be part of, but but wonderful to be part of. But I'd do it for Paul any day.

"You're fighting for all of them and for what they went through.

"For the first time you're meeting people who've been through similar things or their partners or parents or children have been through similar things.

"It gives you that sense of finding somebody who can have some understanding of what this has done to you over years and years and years."

Bronnie agrees. She has gone on to become a clinical negligence lawyer, in part inspired by her father.

"You can't take away from the biggest issue I have", she says, "which is that my dad can't sit here and speak for himself.

"We can say how it affected us, but we can't really know how it affected him truly in his own mind and how he really felt.

"But the least we can do is advocate on his behalf, and I hope that we do the best job that we can for him."

"I will never get over this" says Pe, "I cry for him every day. But I'm lucky. My new partner is totally understanding and hugely supportive of my quest.

"But you’ve still got to move forward or your life stops. I don’t want my life to stop but I will do what I can to get justice for him."

An inquiry spokesman said: "The inquiry is hoping to encourage people who were either infected, or those close to them, to come forward and share their experiences as evidence.

"Sharing the evidence will help the inquiry to make recommendations to stop this happening again, and will ensure these experiences are a matter of public record."

It is due to continue for another year.