A judge says there could be thousands more blood contamination scandal victims as a public inquiry hears the devastating testimonies of those affected by the ‘worst treatment disaster in the history of the NHS.’
Sir Brian Langstaff, chairman of the inquiry, 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 told the inquiry in London on Monday: ‘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.’
He added: ‘And a sobering thought that the consequences of what was done then may be continuing to cause death even now.’
The inquiry heard from a woman who lost both parents to the contaminated blood scandal aged nine.
Lauren Palmer, 33, who lost both her parents in 1993, called for those responsible to ‘admit they made a mistake.’
Stephen and his wife Barbara Palmer died just eight days apart, victims of a health scandal which saw around 7,500 people infected with deadly blood-borne diseases.
They were among an estimated 2,000 people killed by HIV and Hepatitis C contracted from infected blood products administered by doctors.
Lauren’s father was given the infected product Factor VIII to treat his haemophilia and he passed the deadly diseases to his wife.
Scroll down for video
Lauren Palmer, 33, lost both her parents to the contaminated blood scandal when she was nine
Speaking from the opening of the inquest, Lauren, from Bristol, described the mood among the 300 or so victims and families gathered at the opening of the inquiry.
She said: ‘It’s been really beautiful, really touching with pictures of victims and videos with people’s families talking about their experiences and what they’ve been through.’
Lauren has been campaigning with the organisation Factor 8 to force the government to hold and inquiry into the deaths.
She described a sense of relief among campaigners to finally get the inquiry underway.
‘There’s a lovely feeling here – relief and happiness that it’s underway now,’ she said.
‘It’s been nice to meet people from the campaign who I haven’t met personally before.’
The long-awaited campaign will look into the Tainted Blood Scandal – which has been called a public outrage larger than the Hillsborough disaster.
Over 2,000 people, many of them haemophilics like Lauren’s dad, died as a result of the deadly blood products given to them by doctors.
Lauren Palmer (right, aged nine in 1993) lost her parents Stephen and Barbara (left) died just eight days apart in 1983, victims of a health scandal which saw around 7,500 people infected with deadly blood-borne diseases
Factor 8 was a medicine given to haemophiliacs made with blood plasma taken from donors, many from the US who were paid to donate, which was infected with diseases like HIV and Hepatitis.
The inquiry comes after documents appeared in the national press in July 2017 suggesting top doctors knew about the risks of HIV and Hepatitis C in blood transfusions as early as 1981 but allowed them to continue until 1986.
At the time Diana Johnson, Labour MP for Hull North, raised the matter at Prime Minister’s questions, saying the scandal involved ‘a criminal cover up on an industrial scale’ – and asked the Prime Minister to launch an inquiry.
Lauren described the terrible toll the scandal had taken on her family.
‘They both died when I was nine years old eight days apart from each other,’ Lauren said.
‘It literally tore the family apart. I had two older brothers, my mother’s sons from a previous marriage, they went to live with their dad.
‘I moved in with my aunt and uncle and we moved to a new town. I was told not to breathe a word about HIV – it was so stigmatised.
Speaking from the opening of the inquest, Lauren, from Bristol, described the mood among the 300 or so victims and families gathered at the opening of the inquiry
Barbara Palmer holds Lauren Palmer on the day she was born – December 25, 1983
‘HIV is linked to mental illness – it attacks the brain. Mum became very ill before she died and my middle brother was taken out of school at age 12 to be her primary carer.
‘It didn’t stop with their deaths, there was lots of knock-on, which has lasted to this day.
‘Mum was fighting for three years for some justice and some help for the family. Sadly that fell short and she passed away.
‘Now I’m older knowing that my mum had been fighting so long gave me the strength to do it myself – that and the fact that there are so many other families who have been devastated by this.’
Lauren and hundreds of other victims, families and campaigners will be attending the opening stages of the inquiry over the next three days.
‘I’m want to uncover the truth and I want people responsible to be held accountable,’ she said.
Stephen and Barbara Palmer (pictured on her wedding day) were among an estimated 2,000 people killed by HIV and Hepatitis C contracted from infected blood products administered by doctors
‘I want them to put their hands up and admit they made a mistake and they knew what they were doing. There was a cover-up and we want the truth.’
The 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, and the impact this has had.
The contaminated blood scandal is the worst tragedy to hit the NHS – and those responsible need to be held accountable for their actions and prosecuted, one victim said.
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 in London on Monday.
‘Anyone who may be responsible… they need to be held accountable and prosecuted if needs be – I strongly believe that,’ the mother-of-four told the Press Association.
‘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.’
There were readings by Downton actor David Robb (left) and actress Isla Blair (right) today
The 53-year-old was infected following a blood transfusion after the birth of her child in 1987 and another in 1991 – she eventually found out in 2015 that she had Hepatitis C.
Describing how she wakes up every day feeling as though she is ‘waiting to die’, she said she thought the start of the inquiry is a day that would never come, and worries she 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 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’.
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.’
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
‘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.’
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, Cambridge, 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.
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)
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.
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.
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.’
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.
Retired judge, Sir Brian Langstaff, chairman of the inquiry, addressed the hundreds who had attended the start of the Infected Blood Inquiry.
The former High Court judge 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.
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.’
Sir Brian said the purpose of the preliminary hearings is that he wants to listen to what the core participants have to say, and that he is determined the process will be governed by principles.
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
He said these include people being at the heart of the inquiry, that it is properly funded, is as fast as reasonable, and independent of the government.
Sir Brian also said the inquiry will be UK-wide and will not confine itself to London – with the aim to conduct hearings all over the country to enable more affected people to come in person.
With allegations of a cover-up which he said will be investigated, Sir Brian stressed that the probe will be as ‘open and transparent as it is legally possible to be’.
He revealed he is seeking unseen documents, and that they already have some which they would not have had if it was not a statutory inquiry.
With people at the heart, Sir Brian also highlighted how throughout the inquiry he will ensure there is proper respect to a person’s right to be heard.
‘Putting people at the heart of the inquiry must recognise that people have different perspectives to bring to the inquiry,’ he said.
‘It cannot be just a favoured few, or for that matter a favoured many, who are at its heart.
‘Those wishing to attribute blame, those who wish neither but just seek to understand why what happened did, or to explain their actions – why they did what they did.
‘Those who are haemophiliacs, those who were transfused with infected blood, or those who were both; those who were patients or those who were doctors – all are people, all are entitled to be heard.
A scandal sparked with blood sold by US prisoners
The blood contamination scandal was sparked by tainted blood plasma products that were given to thousands of NHS patients including haemophiliacs or those needing transfusions.
A new treatment introduced in the early 1970s involved the use of clotting agent Factor VIII.
Since Britain was struggling to keep up with the demand, supplies were sourced from the US.
Much of the plasma used to make the product came from donors such as prison inmates, drug addicts and prostitutes – who sold blood which turned out to be infected.
By the mid-1980s, the blood was being heat-treated to kill viruses, but thousands of patients had already been infected.
Around 5,000 people with haemophilia and other blood disorders are thought to have been infected with HIV and hepatitis over a period of more than 20 years, according to the BBC. Almost 3,000 of them have since died.
Prime Minister Theresa May announced in July last year that an inquiry would be held into the events over the two decades.
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
‘And I would ask all participants to respect that entitlement, however unpalatable they may find some of the ideas or explanations, or accusations or assertions being put forward.’
During her opening statement, counsel to the inquiry Jenni Richards QC, said the terms of reference were a product of public consultation, describing it as a ‘moving, humbling, and enlightening process’.
‘The inquiry does not underestimate the scale of the task which it faces,’ she told the packed room.
‘It recognises that this is an immense undertaking which will require an enormous amount of work.
‘It is immense because of the breadth of the issues that are encompassed within the terms of reference. It is immense because of the periods of time that are under investigation.
‘This inquiry is looking not at events that unfolded over minutes, hours, days, weeks or even months, but at actions and inaction, conduct, decision making, policy making over decades.’
‘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.’
Ms Richards said the scale of the task is also immense because of the amount of documentary evidence which the inquiry is likely to receive – with 100,000 documents already in their possession – a figure that she said will likely grow.
She also revealed that to the best of their knowledge the inquiry currently has the largest number of core participants of any public probe – with 1,288 already involved of which 1,272 are affected or infected individuals.
Alongside eight charities and campaign groups as core participants, Ms Richards said there are also three government departments which are too.
These are the Department for Health and Social Care for England, Department for Health Northern Ireland, and the Health and Social Services group of the Welsh Government, she said.
Ms Richards said the Scottish Government is not currently a core participant because it believes that the inquiry should not revisit issues already addressed by the Penrose Inquiry.
She added that is very likely the number of core participants ‘will continue to grow’.
Ms Richards said the intended start date to begin hearing evidence is April 30 next year. She revealed they will aim to sit three weeks out of every four, and up to four days a week.
The public probe will hear from those affected and infected first, and that this part of the inquiry will last through May, June and July, she told those gathered.
Ms Richards also said they are not able to currently give a reliable answer as to how long the inquiry will take, but that the process will not be under a year-and-a-quarter.
During her opening Ms Richards also confirmed that the inquiry will likely hear from government ministers.
She said that they expect to obtain witness statements from senior politicians including successive secretaries of state for health, as well as senior civil servants and senior doctors involved in policy setting and decision making.
‘We anticipate that a number of such witnesses will be expected to give oral evidence, and thus be questioned publicly for the first time about their decisions and actions,’ Ms Richards said.
She said as an inquiry team they are ‘acutely aware’ of how lives have been devastated and destroyed as a consequence of the use of infected blood products and infected blood.
‘This inquiry cannot reverse or undo what has happened, but the inquiry team will do everything it reasonably can to provide the answers to the questions that have been sought for so long,’ she added.
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.
For confidential support in the UK, call the Samaritans on 116123 or visit a local Samaritans branch. See samaritans.org for details.