Contaminated blood victims say they are living with “survivor’s guilt” as their lives “continue to be blighted” by the lasting effects of the scandal.
Victims and their loved ones have spoken out about the long-lasting effects of the tragic events that saw thousands of people given contaminated blood or blood products between the 1970s and 1990s.
Thousands were infected with hepatitis and HIV as a result of what is now recognised as one of the worst treatment disasters in the history of the NHS.
Family members and victims are sharing their stories ahead of the official probe into the scandal, the Infected Blood Inquiry, publishing its report on Monday.
The sister of a popular local radio DJ who died after receiving a contaminated blood product has described how she is still deeply affected by her brother’s death almost 30 years ago.
Amanda Patton’s brother Simon Cummings was infected with HIV through his treatment for haemophilia, and died in 1996 aged 38.
Ms Patton, a garden designer from Surrey, said: “He phoned me in September of that year and he said: ‘I’ve got good news and bad news, the bad news is that they’ve given me between two and six months (to live), but the good news is I don’t have to go to the dentist again.’ It was just typical of him, absolutely typical.”
She added: “People say that time heals, but it doesn’t – what happened to him was so awful, he would have been 65… all those years he was denied, it’s all the ‘might have beens’ as well as everything else.”
Mr Cummings was one of the original presenters at an independent radio station in Surrey and Hampshire called County Sound.
“There’s no doubt that the haemophilia did have a big impact on him… but it never stopped him,” Ms Patton said. “He became a very well known local personality and was incredibly popular.
“Simon was just an absolute natural on the radio and everybody adored him. He had a fantastic sense of humour. He was wonderful.”
Mr Cummings died in December 1996 and Ms Patton wants to create a garden for people with haemophilia at the Chelsea Flower Show.
The Haemophilia Society said that the publication of the report “marks a seismic moment in the long fight for truth and justice for people with haemophilia”.
Up to 6,000 people with haemophilia and other bleeding disorders were infected with hepatitis and 1,250 of these were co-infected with both hepatitis and HIV.
Of the group who were infected with both hepatitis C and HIV, only around 250 are still alive today.
Martin Reid from Insch, Aberdeenshire, has described the lifelong impact after being infected with hepatitis C as a child while receiving treatment for his haemophilia.
After treatment, Mr Reid’s hepatitis was cleared in 2011, but he has been left with lasting effects from the virus including anxiety and depression.
“My parents were both distraught about it – they felt a lot of guilt about it, I guess as any parent would,” he said.
The 44-year-old added: “There is something ironically morose about the fact that I tell people that I’m ‘one of the lucky ones’.
“They say: ‘But you’ve got a disease that could have killed you.’
“I say: ‘I consider myself one of the lucky ones that wasn’t infected with HIV, like so many other people were, and I have lived to the age where I have been able to have a family, I am still here. so I do feel like one of the lucky ones.
“But I do feel a sense of survivor’s guilt – especially as the inquiry has been hearing so many harrowing and heartbreaking stories about people’s children being infected and dying at a very early age, or people being infected, never being told and subsequently going on to infect other members of their family.”
The father-of-two continued: “Through every strand of life, it’s there with you, it lives with you.
“Even when I cleared hepatitis C, there are so many things that are still with me, and will be with me until the day I die that are directly linked or have been caused by what has happened.
“In terms of my long-term health, I feel very fatigued a lot, I suffer from insomnia, a lot of the health issues are mental health-related – I suffer from extreme anxiety.”
Through every strand of life, it’s there with you, it lives with you.— Martin Reid
He added: “If this disaster had happened in a single day – if thousands of people died from a disaster in a day, it would be all over the national press, people would be talking about it, there would be a memorial, it would be in the history books as a big disaster, but because this happened over such a long period of time – decades, for some people – it has, in a sense, diluted what this disaster actually involved.”
His grandfather, who also had haemophilia, was also infected with hepatitis C and died from cancer and hepatitis C complications when he was 71.
Haemophilia is an inherited disorder where the blood does not clot properly. Most people with the condition have a shortage of the protein that enables human blood to clot, known as Factor VIII.
In the 1970s, a new treatment was developed to replace the missing clotting agent, which was made from donated human blood plasma.
Manufacturers made the product by pooling plasma from tens of thousands of people – increasing the risk of the product containing blood infected with viruses including hepatitis and HIV.
Many patients welcomed this new treatment, which could be delivered by injection at home, as prior to its introduction, patients required transfusions with plasma which had to be given in hospital.
Kate Burt, chief executive of the Haemophilia Society, said: “Radical change must result from this inquiry if we are to learn the lessons of the past and protect future generations from harm.
“For the sake of the thousands of people who have died and those whose lives continue to be blighted by this terrible scandal, it is vital that the inquiry’s recommendations are acted upon.”
Speaking ahead of the inquiry, a Government spokesperson said: “This was an appalling tragedy that never should have happened.
“We are clear that justice needs to be done and swiftly, which is why have acted in amending the Victims and Prisoners Bill.
“This includes establishing a new body to deliver an Infected Blood Compensation Scheme, confirming the Government will make the required regulations for it within three months of Royal Assent, and that it will have all the funding needed to deliver compensation once they have identified the victims and assessed claims.
“In addition, we have included a statutory duty to provide additional interim payments to the estates of deceased infected people.
“We will continue to listen carefully to the community as we address this dreadful scandal.”
Ms Patton is crowdfunding for a Chelsea Flower Show garden to shine a light on the scandal. Details can be found at: https://www.crowdfunder.co.uk/p/chelsea-flower-show-garden-infected-blood-scandal
