A woman who lost two husbands within a decade to the contaminated blood scandal has 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.
On both occasions 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, based at Fleetbank House near Fleet Street in central London, is expected to last up to three years. It is taking evidence from patients who contracted HIV and hepatitis C through transfusions and blood products, many of which came from the US. About 3, 000 people are estimated to have died and more than 25, 000 may have been infected .
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 “soulmate”, 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 honored to have known both of them, I really am. I have been a privileged woman. I have my first love and my soulmate. They will always be with me and I will love both of them equally. ”
She said she met Foyle when he joined her secondary school in the third form. On the eve of her 16 th 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, ”she said.
They married and had a son, Lewis. Hooper had known Foyle had haemophilia since their schooldays, but one day a doctor called Foyle 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 Foyle 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 only decided to tell him at that point because his liver was showing signs of failing.
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, 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 at the age of 43. Hooper said it was like a scene from The Texas Chainsaw Massacre. “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. ”
Foyle was one of 4, 689 haemophiliacs given contaminated blood products in Britain in the 1970 s and 80 s who went on to contract HIV and / or hepatitis C. More than half have since died. Thousands were also infected by blood transfusions.
After Foyle died, Hooper said she had to sell everything to get by – house, classic car, even the fish out of their pond. She told the inquiry that she kept herself together in the short run and sorted out the family finances as best she could, but then had a catastrophic breakdown.
In 2009, a year after Foyle’s death, Lewis set up a Facebook profile for her. One day a man called Paul Hooper commented on it. “We started chatting and then 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 confessed to her 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 woke up with a headache and couldn’t get rid of it. He had had a stroke. He then developed hypertensive retinopathy, and before long was registered blind. In 2017, at the age of 53, Paul had an extreme bout of sickness and diarrhoea. Hooper feared the worst. “I whispered to him as all these paramedics started to come in:‘ Dont 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.”
Hooper told the inquiry: “My heart overflows with love for the pair of them. They are amazing men and they need their stories told, both of them. ”