‘No sense of victory’: Heartbreaking victims of contaminated blood scandal

VICTIMS of the worst treatment disaster in the history of the NHS said they felt ‘no sense of victory’ when the Infected Blood Inquiry concluded today — as the agony they have suffered has ‘completely overshadowed’ their lives.

Tens of thousands of people in the UK were infected with HIV and hepatitis after they were given contaminated blood and blood products between the 1970s and early 1990s.

They include people who needed blood transfusions for accidents, in surgery or during childbirth, and people with blood disorders who were treated with donated plasma or blood.

Up to 6,000 people with haemophilia were infected with hepatitis, and 1,250 of them were also infected with HIV. Of the group who were infected with both hepatitis C and HIV, only around 250 are still alive today.

Among them is Andy Evans, 47, who was infected when he was just five years old. He started a campaign group called Tainted Blood in 2006, calling for justice for victims.

His parents were told about his HIV infection when he was ten and warned that he may only live five years. They waited until Andy was 13 to tell him.

He said: ‘At that age, my immune system was being severely impacted I had to go on to very high doses of AZT, the only anti-HIV drug that was available at the time.

‘That made me very ill and I suffered with terrible sickness at school. But I couldn’t tell anyone – we were told to keep it quiet.

‘There was terrible stigma around HIV at the time. There was the famous falling tombstone advert, with John Hurt saying “don’t die of ignorance”, which scared everyone.

‘I know one family who had “AIDS DEAD” scratched into their car bonnet and “AIDS SCUM” painted in 6ft-high letters on their house, because their five-year-old son was impacted by HIV and it leaked out somehow.

‘It was drummed into us that we couldn’t tell anyone – it was a disease that you had to suffer in silence.

‘When I was 16, they declared me as having full-blown AIDS. My parents were told to let me go – that my next infection would be my last. And when I survived that, then the next infection. So they were in a constant cycle of preparing to lose their son.

‘God knows how, but I survived four years in hospital, and new medications came out that allowed me to rebuild my immune system.

‘I started talking to others who were infected with HIV through haemophilia treatment. People had started digging into the scandal and had come to the conclusion that perhaps it wasn’t just a terrible mistake after all, that maybe there was some malintent going on.’

Andy’s dad Jim died aged 76 in 2003 without seeing justice for his son. His mum Sue, who will turn 70 on Wednesday, and younger sister Kate, 43, continue to stand by him.

Andy said: ‘Kate was 12 when I went into hospital pretty much full-time with AIDS, and all my parents’ attention was focused on me. She was pretty much left to bring up herself. She carries a lot of the hurt that she suffered during childhood, and it’s been really difficult to rebuild family relationships over the years.

‘I want vindication for all that we’ve been shouting about all these years. We need Sir Brian Langstaff to rubber-stamp what we’ve known for years.

‘You tell people about this scandal and they say, “No, that can’t be true, the NHS wouldn’t do that, the Government wouldn’t do that.” But they did.

‘That’s what we hope to come out of this today. People just want answers to be recognised by officialdom. They want to be able to move on with their lives as best they can. And I think a lot of people are hanging on just to make sure that those answers are out there, that people know what they’ve been through, and they don’t have to suffer in silence any more.’

Most of the infections stem from a blood product called Factor VIII that was imported from the US because the NHS was low on supplies. However, Factor VIII was often taken from high-risk groups including drug addicts, prostitutes and prisoners who had donated their blood for cash.

Campaigner Jason Evans, whose father Jonathan was infected with HIV and hepatitis C and died in 1993, said the scandal has ‘blanketed’ his entire life.

The 34-year-old, from Coventry, said he remembers being with his father on his fourth birthday, by which time he had been ‘ravaged’ by AIDs. He died not long after.

Jason said: ‘For me, there was no life before the infected blood scandal. My first memories of my dad are of him dying of Aids, being at his funeral, dealing with the fallout of that, seeing my mum just crumble to pieces because of everything that happened, being at school and hearing kids call me “the Aids boy” and me not knowing why.

‘To some extent, I have become quite numb to it. A question I’ve thought about is, “What will I tell my one-year-old daughter about this when she’s older?” and I’m really not sure.

‘One thing I know is that I don’t want this scandal to alter the life course of another generation of my family. It certainly altered the trajectory of my life.’

Jason said he has pursued justice for victims 24/7, adding he ‘went to sleep thinking about it and woke up thinking about it’.

‘I think in some strange way this whole thing has been about trying to find some connection to my dad,’ he said. ‘But it won’t bring him back.

‘There’s no victory in this campaign. Maybe there will be compensation, maybe some people will be stripped of their honours, maybe some doctors will be struck off the General Medical Council register – but none of it is a victory in my eyes.’

After his father was diagnosed with HIV, Jason’s mother was sacked from her job at a local bakery.

Highlighting the poor understanding of HIV and Aids that was prevalent, the bakery’s owner said at the time: ‘I know at the moment the disease is dormant in her husband, but he could contract it at any time and pass it on to her. We have food around, and I feel this is the wrong sort of place for Mrs Evans to work. It could have been a real hazard.’

Ros Cooper, from Bewdley, Worcestershire, was 19 when she discovered she had been infected with hepatitis C while being given treatment for a bleeding disorder.

She told Radio 4’s Today programme: ‘This has been such a long time coming. Having campaigned for 30 years, to feel like we might actually have been heard, and the truth is going to come out, is so huge you can’t really get your head around it.

‘Words don’t mean a lot. To a lot of people who’ve lost loved ones, it’s not going to bring back the dead or wash away the crimes that have been committed. What I really want to see is a genuine heartfelt acknowledgement of what has happened over the last 30-40 years and the mistakes and wrongdoings to be acknowledged.

‘Things were done very wrong at all levels of government and the NHS. Decisions were made on behalf of patients, patients were not informed of what happened because of those decisions and lives were effectively ruined. Any kind of apology, to be worth anything, needs to come from someone who truly understands what happened.’

Lauren Palmer’s life was torn apart by the scandal. Aged just nine, she watched her father and then her mother die from HIV.

Mr Palmer, a haemophiliac, was infected with HIV and Hepatitis C during a transfusion and unknowingly passed it on to his wife, Barbara.

Ms Palmer, of Bristol, said: ‘It literally destroyed my family.’

Tragically, her maternal grandfather committed suicide shortly after her mother passed away aged 39 in 1993.

Ms Palmer said: ‘He doted on my mum. He found it very difficult to cope with her death and ultimately took his own life.

‘I was never able to go near my father, I was always kept a safe distance away from him because if I knocked him with his blood condition he would bleed to death. He had quite a severe case. So I was never very close to my dad.

‘I remember having to deal with my parents’ death but as a child you’re quite resilient to things so I just got on with it and I always did quite well at school but I think it’s because I buried myself in that as an escape from having to deal with everything.’

She added: ‘Everybody’s families have gone through absolute trauma and devastation so it’s not just me, it’s the fact that so many other people have been affected by it that need that closure and justice and someone to be made accountable for it. The government need to be held to account.’

The sister of a popular local radio DJ who died after receiving a contaminated blood product has described how she still misses her brother almost 30 years after his death.

Amanda Patton’s brother Simon Cummings was infected with HIV through his treatment for haemophilia and died in 1996, aged 38.

She said: ‘He became a very well known local personality and was incredibly popular. Simon was an absolute natural on the radio and everybody adored him. He had a fantastic sense of humour. He was wonderful.

‘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.’

During his time as a radio presenter Mr Cummings decided to create a charity single – Everybody’s Got A Crisis In Their Life – and got some famous names to contribute, including Cliff Richard, Justin Hayward and Rick Wakeman.

Ms Patton wants to create a garden for people with haemophilia at the Chelsea Flower Show.