‘Dark day in our country’s history’: Victims of infected blood scandal react to inquiry report

“Whatever the cost, we will pay it” – the words of the prime minister on what he described as a “day of shame”.

The scandal had already been called the worst treatment disaster in the history of the NHS. Today we learned it could largely have been avoided.

The inquiry chair, Sir Brian Langstaff, pointed to the sheer scale of the tragedy, calling it “horrifying”.

At least 30,000 people​ were infected with Hepatitis C over the 1970s and 1980s. And 1,300 were infected with HIV, including 380 children.

More than 3,000 people are estimated to have died from infections attributed to blood or blood products, many of them haemophiliacs, given tainted blood as part of their treatment.

Suresh and Susan are two of the tens of thousands of people whose lives have been dramatically impacted by the infected blood scandal.

Suresh and his brother were both infected following a treatment for their haemophilia in the 70s. At the time Suresh was 20, he’d been diagnosed with hepatitis C and HIV. In 1995, his older brother Praful died from AIDS, contracted from contaminated blood. He was just 34.

Susan was diagnosed at three years old with haemophilia and was treated with infected blood. That event has cast a long shadow, sometimes leaving her frightened to touch her children for fear of infecting them.

Jackie Long: Some of the survivors were saying the world now knows the truth. You’ve lived with it for years and years. What does it mean to you, Susan?

Susan: Ultimately about vindication. People like me, haemophiliacs, were told that we were given the best possible treatments available at the time. And we know that that’s a lie and a myth that’s been perpetuated for decades. I think that the inquiry report has cast a shadow over the last few decades, where individuals and government collectively have lied to the haemophiliac community.

‘Tested on like lab rats’

You’ve been used and tested on, like lab rats, and it is a very dark day in our country’s history, and that over 3,000 people have died as a direct result of this scandal, and not here to hear the final report and to hear the prime minister’s apology is nothing short of a national disgrace.

Jackie Long: Suresh, your thoughts?

Suresh Vaghela: I feel vindicated for the day, for all the things that I’ve said in the past. And after a while you start convincing yourself that maybe you’re the one who’s crazy. But what Sir Brian {Langstaff} said and the validation that is given to us and the community as a whole, second to none. This day has been more monumental than I thought possible.

Jackie Long: One of the terrible threads that run throughout this report is the disregard for people who were going through this terrible situation, the complete lack of respect. Tell me how you found out you’d been infected with HIV.

‘I’m afraid to say you are HIV positive’

Suresh Vaghela: I was first year at university and I had had a previous blood test done, and over the phone, the nurse says, ‘If you can’t come in, is it all right if I tell you over the phone?’ I said, ‘Yeah, that’s fine’, and I thought it’s going to be a normal blood test. And she said, ‘I’m afraid to say that you are HIV positive’, and I didn’t really understand what that meant in its entirety.

And then she said, ‘First of all, what you have to do is go home, sort your papers out.’ I said, ‘What’s the medication?’ She said, ‘There is no medication, you’ve only got two months to live.’ And that’s how my life was and I lived in a suitcase. That’s the first year of university. For the first two months, I thought I’m going to die, and that’s how I lived my life. But the two months turned into two years. 20 years, and after 40 years, I’m still here.

Jackie Long: That disregard, that disrespect for people in such trauma, do you recognise that?

Susan: Absolutely, and I was a haemophiliac going for regular reviews, clinical reviews at the hospital. These were like homes for homes from haemophiliacs. You get to know the clinical staff, the nursing staff, it’s a very familiar environment. And there’s that trust between you and the doctors and the nurses. And on the day that I was diagnosed, I’d gone in to have a regular blood test and my mum was sitting outside and the nurse spoke, actually said to me, ‘Susan, when we get on top of your hepatitis C’, and I said to her, ‘I don’t have hepatitis C, I don’t know what you’re talking about.’

She looked very taken aback, asked me to go and sit outside, and then my mum and I were called into the consulting room, where we were told that, ‘Mrs Lee, don’t you remember at your last clinical review, we told you that Susan had tested positive for hepatitis C infection?’. And we know now, decades later, that that was a lie, that never took place. It was only with the inquiry that we saw other families that had identical accounts to our own.

Jackie Long: Give us a brief sense of what it was like to live with those diagnoses.

Suresh Vaghela: For me, it was a complete jail sentence in the sense that you’re trying to make relationships, you’re trying to make friendships, and all the while in the back of your head you’re thinking, I’m having this conversation, but I’m lying to them because I couldn’t tell them the truth. You were a prisoner in your own body and living a life that you knew wasn’t exactly 100%. Because you’re continually hiding some of the things, and that’s not how you have a friendship.

‘Heart restarted 18 times’

Susan: I had a hereditary bleeding disorder, which I had from the moment that I was born, and then I was given another terrible infection on top of that. And at the time I tried the treatment, which was a a terrible treatment, it was interferon, and a clinician once said to me, it was like using a nuclear bomb to kill a field mouse. It was hugely disproportionate. I had to have my heart restarted 18 times during the treatment, and my two young daughters at three and five had to witness all of that. So it’s intergenerational harm. It’s affected my children. It’s affected my mother.

Jackie Long: Your ability to be a mother?

Susan: Absolutely, how can you feel confident interacting with your children when you know that you’ve got an infectious disease?

Jackie Long: Did you feel frightened of approaching them, of hugging them?

Susan: It robbed me of that love and closeness that I should have had with my children during that time, I wasn’t able to have, and I can never get that back.

Jackie Long: In ways today is about truth. But there is justice too. I just wonder how confident you are that you will get the justice that you’re seeking?

‘I’m a bit sceptical’

Suresh Vaghela: If it was left in Sir Brian’s hands, I’d be 110%. But, with the government, I’m a bit sceptical. Until I see the the proof of the pudding. I don’t really believe it.

Susan: I think we’ve been lied to for so many years now. It’s no more words. We need action. We need compensation for everybody that’s been affected by this scandal, and to have systemic changes so that a tragedy like this never, ever happens again.

Jackie Long: I want to end with you. You lost your brother Praful because of this. I just wonder, you must be thinking a lot about him today.

Suresh Vaghela: Every day, I think about him, but today, more than ever. Because he should have been part this campaign, should have been part of this feeling of joy that I have at this moment in time. But along with all the other friends, they will not see this, and it’s unjust.

Jackie Long: And you lost many friends.

Suresh Vaghela: I lost many friends and in one year I went to 70 funerals. And, after the funeral, you’ll be going to a party, and people were saying, ‘Well, you’re not much fun’, but I just buried my brother in the morning, how can it be fun?. But I couldn’t tell them the truth because that’s what life was, it was a complete lie, and then you have to live it for 40 years.