Advising with empathy and experience

The continuing toll of contaminated blood.

A woman who lost two husbands within a decade to the contaminated blood scandal said the project set up to support victims “was nothing short of rubbish.”

The infected blood inquiry heard how Liz Hooper fell in love with and married each husband only to lose them because of contaminated blood.

Both times Ms Hooper had to sell her house and was left with nothing. She says she got next to no support from the England Infected Blood Support Scheme (EIBSS), the government project set up to support victims of the scandal. “The EIBSS was nothing short of rubbish,” she said.

The inquiry, which is expected to last up to three years, is hearing evidence from patients who contracted HIV and hepatitis C through transfusions and blood products, many of which came from the US. Up to 3,000 people are estimated to have died and more than 25,000 may have been infected.

The infected blood inquiry is investigating how thousands of haemophiliacs were given blood products by the NHS contaminated with the HIV virus and hepatitis C. At least 4,689 British haemophiliacs are thought to have been given infected blood in the 1970s and 80s. So far, half have died.

The inquiry will try to establish the exact number of people infected, examine the effect the infection had on people’s lives, investigate whether there were any attempts to conceal what happened, and identify any individual responsibilities as well as systemic failures. 

Ms Hooper told the inquiry how she loved her two haemophiliac husbands equally and differently. While Jeremy Foyle was her “first love”, Paul Hooper was her “soul mate”, she said.

“I have known and lost two of the best human beings ever to have walked this Earth. For me, it’s about answers. I want to know why. I am honoured to have known both of them, I really am. I have been a privileged woman. They will always be with me and I will love both of them equally.”

She said she met Jeremy Foyle when he joined her secondary school in the third form. On the eve of her 16th birthday she saw him for the first time in a year at a party that he had gatecrashed. “Oh he did look gorgeous! It was like something out of Love Story.”

They married and had a son, Lewis. Ms Hooper had known Jeremy Foyle had haemophilia since their schooldays, but one day a doctor called him into his office and told him he had hepatitis C, that it would attack his liver, and that he could pass it on to his wife and son.

When he asked the doctor whether he had just discovered this, he was told they had known about it for 10 years and had been monitoring him. They had decided to tell him then because his liver was showing signs of failing.

Ms Hooper said her husband was told he had not been informed of the virus because they did not yet have a name for hepatitis C.

Like so many haemophiliacs infected by contaminated blood, Jeremy Foyle lived out his days in agony and confusion. The drugs he was prescribed changed his personality, and he communicated in “grunts and snarls.” Eventually, he bled to death in 2008, aged 43.

Liz Hooper said: “He had blood in the corner of his eyes, it was coming out of his ears, down his nose. My last memory of Jeremy is looking like something out of a horror film.”

Jeremy Foyle was among 4,689 haemophiliacs given contaminated blood products in Britain in the 1970s and 80s who went on to contract HIV and/or hepatitis C. More than half have since died. Thousands were also infected by blood transfusions.

After Mr Foyle died, Liz Hooper said she had to sell everything to get by – house, classic car, even the fish from their pond. She told the inquiry that she ‘kept herself together’ and sorted out the family finances as best she could, but then had a catastrophic breakdown.

In 2009, a year after Jeremy Foyle’s death, her son, Lewis, set up a Facebook profile for her. One day a man called Paul Hooper commented on it. “We started chatting and didn’t stop till he died. We both felt very much like we had met one another in a previous life. It was uncanny.”

When he told her that he had haemophilia, she said she laughed in his face and said: “is that all?” Then he told her he had HIV and hepatitis C. “But it didn’t matter, I was smitten. He could have had leprosy and I wouldn’t have cared.” They married in 2011.

In 2015, Paul Hooper woke up with a headache and couldn’t get rid of it. He had suffered a stroke. He then developed hypertensive retinopathy, and was soon registered blind.

In 2017, at the age of 53, Paul had an extreme bout of sickness and diarrhoea. Liz Hooper said that she feared the worst. “I whispered to him as all these paramedics started to come in: ‘Don’t you be dying on me, Hoopy. I am not ready yet.’ And he said: ‘Don’t be daft you silly woman, I’m not going anywhere.’  He then went into cardiac arrest and died.”

Ms Hooper told the inquiry: “My heart overflows with love for the pair of them. They were amazing men and they need their stories told, both of them.”