Contaminated blood scandal victims ‘were silenced and left suicidal’

The contaminated blood scandal is the NHS’s worst tragedy – and those responsible must be held accountable for their actions and prosecuted, a victim said today.

A public inquiry will consider the treatment of thousands of people in the 1970s and 1980s who were given blood products infected with hepatitis viruses and HIV.

Victim Michelle Tolley spoke as the probe into the deaths of more than 2,400 people who were infected with HIV and Hepatitis C as a result of the scandal began today. 

A public inquiry will consider the treatment of thousands of people in the 1970s and 1980s who were given blood products infected with hepatitis viruses and HIV (file picture)

‘Anyone who may be responsible… they need to be held accountable and prosecuted if needs be – I strongly believe that,’ the mother-of-four said in London.

‘People need to know that this tragedy happened,’ she said. ‘This is the worst tragedy in the history of the NHS and it must never ever happen again, absolutely never.’

The 53-year-old was infected following a blood transfusion after the birth of her child in 1987 and another in 1991. She eventually learned in 2015 that she had Hepatitis C.

Describing how she wakes up daily feeling as though she is ‘waiting to die’, she said she thought she would never see the start of the inquiry, and might not see it end.

Feeling ‘very positive’ about the inquiry and that prosecutions could be achieved, she added: ‘I have great, great faith that they will leave no stone unturned.’

Sir Brian Langstaff, chairman of the inquiry, previously said the probe would examine whether there had been an attempt to cover up the scandal, and has promised a ‘thorough examination of the evidence’.

Ms Tolley from Sparham, Norfolk, said the scandal has stolen her life, and that she fears a liver scan next month may reveal she has cancer.

‘I feel we have been given a death sentence without committing any crime. I have got a death sentence hanging over my head,’ she said

Downton actor David Robb

Isla Blair

There were readings by Downton actor David Robb (left) and actress Isla Blair (right) today

‘My future has been lost, my last 31 years have been cruelly snatched away from me. 

‘It has a knock-on effect to the affected people – my husband, my children, my grandchildren, my colleagues – that ripple effect really is much wider.

‘We need the general public to know and understand exactly what has happened and why it happened.’

I was infected with HIV in the 1980s through my haemophiliac husband, woman says

With her identity hidden, one woman said she became infected with HIV through her husband who was a haemophiliac, and who had been given contaminated blood.

She said when they found out they were left stunned and devastated.

‘This was the mid-1980s and the climate of fear, discrimination and stigma associated with HIV and Aids was horrendous,’ she added.

‘We coped the best we could. We were silenced, and we kept quiet.’

Anthony Farrugia said a whole generation of haemophiliacs in his family has been wiped out as a result of the scandal – his father died of Aids, and he also lost two uncles.

‘It is important in that the public are going to be finding out what we have been through,’ the 46-year-old from St Neots, Cambridgeshire, said.

‘I am thrilled that we are getting this opportunity today to flood the news channels, which we have not had before. I think this is the loudest our voice has ever been, and obviously this is only the start of it.’

The beginning of the Infected Blood Inquiry, which is expected to last at least two-and-a-half years, began with a commemoration to the victims.

Images of individuals and private family moments to the music of Read All About it by Emeli Sande filled the large screen, alongside more than half an hour of video testimonies.

There were also readings by Downton actor David Robb and actress Isla Blair who, through a segment called ‘this is what we know’, spelt out the figures, facts and impact.

‘The survivors, the infected – who are still living – suffer the appalling consequences of what happened, every day, every hour, every minute of their lives,’ Blair told the room which was packed with more than 500 people.

‘The widows, the lovers, the sons, the daughters, the mothers, the fathers, the grandchildren – they suffer too, in grief, in anger, in silence.’

Prime Minister Theresa May announced in July last year that an inquiry would be held into how thousands of haemophiliacs and other patients in the UK were given infected blood products

Prime Minister Theresa May announced in July last year that an inquiry would be held into how thousands of haemophiliacs and other patients in the UK were given infected blood products

Robb told those gathered for the opening of the probe that it started with the haemophiliacs, many of whom were still schoolboys.

‘Factor VIII seemed like a miracle – stopping bleeds quickly and even preventing them. This wonder drug let boys be boys, play football, climb trees, mess around, fight and do all the stuff teenagers do,’ he said.

‘It wasn’t only teenage boys, boys much younger were also treated with Factor VIII.

It took me 35 years to find out I had been infected with Hepatitis C, man reveals

One man said he was given Factor VIII blood products as an eight-year-old child for a swollen knee, and was misdiagnosed with haemophilia.

It was not until he was 43 years old that he found out he had been infected with Hepatitis C.

‘When they told me what they had done to me, I stood at a motorway bridge to jump off it – basically, that has been my life ever since,’ he added.

‘I lost everything, I lost my whole life the day I found out – everything ended.’

‘Factor VIII was made by the pooling together of plasma from thousands of blood donations. If one donor had an infection, the entire batch would be contaminated.

‘The blood was taken from those who were paid to donate, which included prisoners, drug addicts and those on the edges of society.’

Robb said the horrific consequences were inevitable, adding: ‘In all it is thought that over 4,500 haemophiliacs were infected in the United Kingdom, and around a quarter of these – 1,250 – were infected with both HIV and Hepatitis C.

‘Half the infected haemophiliacs are now dead, and they are still dying. But it didn’t stop with haemophilia, and it wasn’t only men.’

Blair said many young women ended up being infected with HIV through their husbands.

‘Full of hope and the dreams of a future and a family – they had no idea that their lives would be so cruelly and utterly destroyed,’ she said.

Robb also highlighted how blood transfusions received in hospital after giving birth, during operations or from dental surgery could leave people infected.

‘They were often only told it had happened many years after they were infected,’ he said.

Blair added: ‘For too many the infection took away life itself.

‘For many hundreds of innocent people it has taken away their dreams, their hopes, their dignity… their sanity, their potential, and even their homes and marriages.’

Testimonies from those infected and affected by the contaminated blood scandal, spelling out the life-changing impact of it, were also shown to the inquiry.

Emotional video accounts lasting more than half an hour described the toll on all aspects of their lives as they spoke to the camera.

One widow revealed how her husband John, who was a severe haemophiliac, died of Aids in 1994 and also had Hepatitis C.

‘They didn’t even have the decency to tell me to my face’, says victim 

Holding a piece of paper, one victim, who is a haemophiliac, said he was infected by contaminated Factor VIII in the early 1980s.

The man said he found out ‘in the most bizarre way’.

He said he was informed in a letter sent to his address from his haematology department which notified him that he had tested positive for the ‘Aids associated virus’.

He added: ‘You’ve only got to use your imagination to know what implication that would have been for the family if that had gone to the wrong address.

‘If it hadn’t have gone at all to me, I could have infected my wife. I was very angry that they sent it in a letter, not even in a recorded letter.

‘They didn’t even have the decency to tell me to my face.’

‘I feel we have been treated very badly,’ she said. ‘Nobody has listened to us over the years, it is like knocking on a door and it never opening.’

She told how the news completely changed their marriage, with life becoming ‘very difficult’ as a result.

After a poem called Making A Difference was read by Lemn Sissay, those infected or affected by the scandal approached the front of the stage clutching tiny bottles.

Each one, that was clear and clinical in appearance, contained a private and personal message, and was placed into a wire shelving unit in front of the audience.

One woman could be seen kissing her miniature container before placing it down.

Former High Court judge Sir Brian said he would rather that no one had any need to attend the probe, and that what has been described as a tragedy and catastrophe had not happened. 

He added: ‘The numbers here today pay a silent testimony to the sheer scale of the tragedy.

‘It is a truly sobering thought that if some of the claims are well-founded – and it is for this inquiry to find out if they are – there may yet be many thousands more who do not feel well, but have not yet been told that the reason for this is that their life is threatened by Hepatitis C.’

Sir Brian said it is estimated that the number of deaths could go far beyond 2,500, adding that there is a ‘real chance that these estimates may prove right’.

He added: ‘And a sobering thought that the consequences of what was done then may be continuing to cause death even now.’

Extending his thanks to the infected and affected who have spoken to him so far and helped shape the terms of reference, Sir Brian said they taught him a lot he had ‘not previously appreciated’.

‘Whether the inquiry succeeds in answering its terms of reference depends very much on you,’ he told the room.

‘I know because a woman who lost her son specifically asked a member of the inquiry staff last week to remind me of it – that for some the very fact of the inquiry will reopen old wounds, which makes it all the more difficult to bring themselves to play a part – yet they wish nonetheless to do so.

‘I recognise their bravery which makes their contributions all the more valuable.’

According to the terms of reference, which were published in July, the inquiry will consider ‘whether there have been attempts to conceal details of what happened’ through the destruction of documents or withholding of information.

It will also consider if those attempts were deliberate and if ‘there has been a lack of openness or candour’ in the response of the Government, NHS bodies and other officials to those affected.

Prime Minister Theresa May announced in July last year that an inquiry would be held into the events over the two decades, when thousands of haemophiliacs and other patients in the UK were given infected blood products.

The announcement was welcomed at the time by campaigners, who have been pressing for years for an inquiry into the import of the clotting agent Factor VIII from the US.

Much of the plasma used to make the product came from donors such as prison inmates, who sold blood which turned out to be infected.

For confidential support in the UK, call the Samaritans on 116123 or visit a local Samaritans branch. See for details.