A landmark public inquiry into the contaminated blood scandal – known as the worst disaster in the history of the NHS – has opened, marking an historic moment in the fight for justice over the disaster.
In a moment many thought would never come, hundreds attended the Infected Blood Inquiry for its preliminary hearings last week.
But this first stage of the inquiry did not hear evidence, it was instead an opportunity for people infected by contaminated blood products in the 1970s and 1980s – or families of the dead – to have a voice in telling chairman Sir Brian Langstaff what they hoped the inquiry would achieve.
So what did we learn?
1. Government expressed ‘sorrow and regret’ over the disaster
An apology featured prominently in the Department of Health’s (DoH) opening address to the inquiry.
Eleanor Grey QC, representing the DoH, said: “This is the beginning of a journey to uncover what happened but it begins with an expression of sorrow and regret. We welcome this public inquiry. The prime minister when she first announced the establishment of the inquiry spoke of an ‘appalling tragedy which should never have happened’.”
The barrister also appeared to concede there may have been a “cover-up”, saying: “There have been eloquent statements about breaches of trust experienced, as well as many reminders of what may, at worst, have been a cover-up, or, at best, a lack of candour about past events.”
The DoH’s opening statement won light applause from victims and families in the hall, somewhat unexpectedly after talk earlier in the day of a mass walk-out or booing while it was underway.
2. Thousands of people have died and people are still dying
First and foremost, this inquiry is being heard because an estimated 2,800 people have so far lost their lives to the HIV and hepatitis C viruses that lurked within infected NHS blood – while more continue to die every week.
To mark the catastrophic loss of life, the inquiry opened with a commemoration ceremony for the dead.
A film was shown where victims spoke movingly about the devastating loss they had suffered, whether through their own ill health or the death of loved ones, and appealed for those responsible to be held accountable.
They described wrecked marriages, lost careers, the agony of having to watch partners and children being tested for viruses they may have passed on.
Some women spoke of the horror of forced abortions being inflicted on them, and others about the stigma of living with HIV, particularly during the 1980s.
3. The inquiry is the largest of its kind ever in the UK
Lead counsel to the inquiry Jenni Richards QC revealed that, to the best of the team’s knowledge, the proceedings are the largest of their kind in the UK.
She said 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.
Inquiry chairman Sir Brian Langstaff said the numbers present “paid silent testimony to the sheer scale of the tragedy”.
3. Health ministers may be forced to give evidence for first time
One key criticism of two past probes into the disaster has been their failing to compel senior politicians and civil servants to give evidence.
However this will change as the Infected Blood Inquiry has full statutory status under the 2005 Inquiries Act to call witnesses and compel them to give evidence.
Legal counsel Jenni Richards QC said that successive Secretaries of State for Health, senior civil servants and doctors involved in policy setting and decision-making will be expected to attend.
She added that they would “be expected to give oral evidence and thus be questioned publicly for the first time over their decisions and actions”.
Names likely to feature on this list include former Prime Minister John Major and former health secretaries Kenneth Clarke, William Waldegrave, Virginia Bottomley, Norman Fowler and John Moore, who served from 1981 to 1992.
4. There may be tens of thousands more victims
The NHS should test “every single person” in the UK for the hepatitis C virus to find potentially thousands of unidentified victims of the contaminated blood scandal, the inquiry was told on the third day of hearings.
People who were infected with the liver-wasting virus through blood transfusions called on government to roll-out an urgent testing programme.
They said anyone who received blood transfusions or blood products prior to September 1991, when blood screening was introduced, may be at risk of having contracted the virus.
As many as tens of thousands may not yet know they are infected, it was heard.
5. Government accused of blocking access to documents...
The inquiry was told key government documents are already being withheld from victims of the blood scandal.
Steven Snowden QC, who represents hundreds of core victims, accused the Cabinet Office and Treasury of conspiring to evade legitimate requests.
He revealed the Treasury had refused a Freedom of Information request from campaigner Jason Evans on the grounds that it would be too expensive.
Des Collins, a senior partner at Collins Solicitors, the law firm that instructed Snowdon, said afterwards: “It is not for government departments to ask the Cabinet Office to decide which documents can be made available to whom and when. A freedom of information request of this nature should not be granted at a civil servant’s discretion.”
6. And medical records have been destroyed
Steven Snowden QC claimed files were also disappearing within the NHS.
“There are still problems with trusts destroying individual records,” he said.
Without full medical records, victims are unable to trace the history of what was known when about the infections they contracted and when.
Raymond Bradley, speaking on behalf of the Haemophilia Society, said medical records would be an important source of information for the inquiry.
7. Former PM John Major and the ‘lottery grants’ insult
Bradley also criticised government correspondence over the scandal, showing a letter from John Major written in May 1996.
In it, the then prime minister refused to agree to compensate victims of the blood scandal, saying they had been given “the best possible treatment at the time” despite being infected with Aids and hepatitis C.
He suggested victims might instead “be able to benefit from lottery grants”.
A letter from former previous prime minister Margaret Thatcher was also shown in which she said the government “had not accepted” that the infections were “the subject of negligence”.
8. Degrading subsistence payments to victims condemned
A whole section of the inquiry will be dedicated to investigating the treatment, care and support – including financial support – provided to victims.
Counsel to the inquiry Jenni Richards QC said in her opening statement that many had expressed concerns about the trusts and schemes established to provide financial assistance to people who were infected with HIV and hep C.
Operating at arms lengths from government, the trusts were accused by blood of not being transparent and unfit for purpose.
They also spoke of feeling degraded by having to beg for subsistence payments from these bodies.
The inquiry will also consider the varying levels of financial support for victims in different parts of the UK.
9. Infected people treated as ‘pups’ in medical studies
Disturbingly, those addressing the inquiry made reference to victims being treated as “pups” by doctors.
It was revealed this was a medical acronym for “previously uninfected patients” who allegedly became the subjects of anonymous medical studies and were not told.
Aidan O’Neill QC, who represented almost 250 victims, Haemophilia Scotland, and the Scottish Infected Blood Forum, told the inquiry: “There were two brothers at one of the meetings I was at, who said that they were haemophiliacs, young boys having to come in after having been infected, but not knowing of their infection, but being the subject of a study.
“The doctor referred to them as “There’s my young PUPs”. They thought it was a term of affection.
“They thought it was because he liked them. They didn’t know it was an acronym for Previously Uninfected Patients.”
He said their lives had become data sets to be mined and they didn’t know about it. He said this was a violation.
This could prove a key line of evidence in establishing whether there was non-consensual testing and treatment of patients.
10. What happens next?
The Infected Blood Inquiry will investigate how thousands of people in the UK came to contract the HIV and hepatitis C (hep C) viruses through treatment with contaminated blood or blood products.
The deadly treatments were used by the NHS in the 1970s and 1980s.
Campaigners have long insisted the disaster was avoidable and have made repeated allegations of a cover-up over what happened, but to date no one has been held to account.
The inquiry is expected to reopen on April 30 next year and will take no less than 15 months.
Some of the inquiry hearings will be held in Edinburgh, Belfast, Cardiff, and potentially Leeds, to allow as many people as possible UK-wide to attend.