BLOOD is a necessary, even vital component of any healthcare system. Hundreds of thousands, maybe millions of people, have been saved by blood transfusions, and serious genetic conditions, like haemophilia, have been treated by blood products.
 
One of the founding fathers of British social policy, Richard Titmuss (The Gift Relationship, 1970) argued that blood donation exemplified the core values underpinning the NHS.
 
He contrasted Britain’s system (people were given free healthcare and were thus prepared to freely donate blood) with the blood supply in the US (in the hands of for-profit providers), claiming that the latter was less safe and less economically efficient.
 
The obligation on the NHS is simple: provide sufficient, uncontaminated blood to those it serves not just to improve health but to demonstrate its value base of free access to care.
 
The Titmuss account is, however, more than 50 years, and it seems an entire universe, away from the current reality.
 
Last week, the Langstaff inquiry published its final report. The findings have been widely reported in the media, but, when a generally shameless Prime Minister talks about a “day of shame” for the British state, you know something truly dreadful has happened.
 
The facts are beyond dispute: 30,000 people were treated with imported blood products, particularly Factor VIII which was cited as a “wonder drug” in the treatment of haemophilia.

Imported and infected
 
Much of it was purchased from the US with some coming from desperate people, including prisoners and those with addiction problems. The screening was hopelessly inadequate. Just over 3,000, including almost 500 children, died. The mortality rate continues with one estimate suggesting that someone is dying every four or five days.
 
One example stands out: of the 122 children attending the Treloar school haemophilia centre between 1970 and 1987, only 30 survived.
 
Those responsible cannot claim ignorance. As far back as 1952, the WHO was warning about the risk of contaminated blood and advising the careful selection of donors.

Sarah Bosley (the Guardian, May 20 2024) reveals that Cutter Laboratories issued the following advice in launching a product in the 1970s: “Since the presence or absence of hepatitis virus in Koate concentrate cannot be proven with absolute certainty, the presence of such a virus should be assumed.”
 
Some doctors seem to have made a cost-benefit analysis that the risk of Hepatitis B posed fewer dangers than the risk of bleed-out. Others simply ignored or minimised the dangers — a leading haematologist in Northern Ireland talked only about the risk of jaundice.
 
For years, the more virulent Hepatitis C and later HIV were ignored. Some doctors saw the risk — in Sheffield Children’s Hospital, doctors reverted to cryoprecipitate, a safer product taken from a single donor (the Economist, May 20 2024).
 
Margaret Thatcher claimed that those affected were receiving the best possible treatment — this was untrue.
 
In 1983, despite warnings from the US and World Health Organisation about Aids, the health minister Kenneth Clarke told Parliament there was “no conclusive evidence” it could be transmitted via blood products. Andy Burnham claims that he was actively lied to about the dangers.
 
In short, a combination of medical arrogance, corporate greed and political back-covering was responsible for several thousand deaths.
 
In France, with over 4,000 HIV infections, there have been prosecutions. In the US, lawsuits have been taken against the pharmaceutical companies. It does not look like either will happen in Britain, though some issues relating to pharmaceutical companies are addressed in volume four of the report.
 
Every number has a face
 
I only knew only one of the victims, Russell. He was a tiny kid with a giant shock of hair and a smile that seemed to cover two-thirds of his face.
 
He was one of that cohort of kids with communist parents who were dragged to every party bazaar and participated in every demonstration, even in pushchairs wearing nappies — like my own kids. Yet he remained easygoing and retained an amazing tolerance for the parental addiction to lost causes.
 
Russell was being treated by the NHS for his haemophilia in the 1980s. He was moved onto Factor VII. He contracted Hepatitis C when he was about 15 and when he was 18, he was diagnosed with HIV — neither he nor his mother knew that he was being tested or when he contracted HIV.
 
When he was informed about his condition, he was asked if he was gay. This was not unusual. Andy Evans, chair of the Tainted Blood campaign group recollects (the Guardian, May 21 2024), “These viruses carry stigma.” Equally, that kind of question diverts from the real cause of the infection — infected blood.
 
He died in 1994, in effect killed by the institution that was responsible for his care.
 
The first imperative of parenthood is do not survive your children — nothing can be worse. Yet his mother endured and campaigned seeking neither reward nor status nor even recognition. She was in London for the launch of the report.
 
Some time ago, while visiting an Ulster Museum exhibition on women in Northern Ireland politics, I saw her portrait up with the others and thought — you deserve to be here more than most.
 
Exposing the truth
 
Jason Evans deserves special recognition; he was four years old when his father died through HIV infection. As a young adult, he unearthed many documents that revealed details of the scandal. He is now the director and Founder of Factor 8, one of the leading campaigning organisations that disclosed the cover-up.
 
Costs and compensation
 
Now that the facts are out and most of those responsible are dead, the two remaining questions are: how can the infected and affected be compensated for their appalling experiences; and, what will it take to prevent anything like this from happening again?
 
The government quickly announced a compensation scheme (the previous payment was ex gratia) promising to do “whatever it takes.” The daughter of a deceased victim wryly commented that she would only believe it when money appeared in the account.
 
Answering the second question is more difficult because we have been here so many times before — Bloody Sunday, Hillsborough, Grenfell, the Post Office Horizon scandal.
 
In every case, there is denial with an attempt to blame the victims (usually amplified by the gutter press), there is resistance to calls for an inquiry (backed frequently by expensive lawyers) and when the truth eventually emerges, they come crawling out of the woodwork to offer “unreserved apologies.” In the same week that Langstaff reported, Paula Vennells wept and apologised throughout her appearance at the Horizon inquiry.
 
Andy Burham (the Guardian May 16 2024), among others, argues the need for a Hillsborough Law that would enforce a legal obligation of candour on politicians and public officials — the government supports only a charter. Despite the practical difficulties, Martha’s Law challenges the idea that doctors always “know best” by insisting on the right to a second opinion.
 
The Bristol Royal Infirmary inquiry, 2001 (of which Brian Langstaff was lead counsel) recommended the replacement of medical litigation (which takes years and makes fortunes for lawyers) with an administrative scheme for “awarding swift compensation commensurate to medical harm suffered without proving blame” (Private Eye, May 24 2024). If it had been adopted, victims would not have had to wait years to make up for the harm and financial costs suffered — the Labour government did not act.
 
In the case of infected blood, there were other, simpler measures — in 1987 Scotland decided to be self-sufficient in heat-treated Factor VIII which eliminated the risk of HIV infection, but that was too late for some.
 
More fundamentally, there is a need to re-examine centralised, hierarchical structures in institutions of care and to think of more participative, more accountable ways of delivering services. And, those gung ho about introducing market efficiency into the public sector might also think about the corrupting effects that come with it.

In the end, however, as Brian Langstaff responded to those who gave him a standing ovation: “The words come from you … This is your report.”
 
Dr Michael Morrissey has been researching and campaigning on social and economic issues in Northern Ireland for decades.