‘NHS blood saga broke Nuremberg Code’: Government compensation long overdue
The Ham&High’s investigation has highlighted the many ways local victims of the NHS contaminated blood scandal continue to be failed decades on. Now investigations editor David Powles and journalist Emma Youle outline the improvements badly needed
You would be hard pressed to find a group of people as repeatedly let down by the state as the thousands affected by the contaminated blood scandal.
This failure runs deep and is a scar on the good work that those tasked with serving the public so often do.
Go back to the start and a series of ill-judged decisions have ultimately set so many families down a path that no-one would want to contend with.
Families like that of Highgate mother Della Hirsch, 71, who lost her son Nick to hepatitis C (hep C) contracted from contaminated blood products. He died aged just 36 in 2012.
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Or ex-Royal Free Hospital patient Mark Ward, 46, who has lived with HIV and hep C since he was 14-years-old simply because he needed blood factor products to treat the clotting disorder haemophilia.
Or former Crouch Ender Clair Walton, 53, whose haemophiliac husband unwittingly gave her HIV before he died aged 34.
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Or UCL Hospital patient Maria Fletcher, 46, who has been left begging for financial support for fertility treatment because of the damage hep C has ravaged on her body.
Or ex-Gospel Oak resident Phil Welman, 69, who lives in abject poverty because of the debilitating fatigue he suffers from hep C contracted from a transfusion.
For whatever reason, be it to save cash or with good intentions at heart, the decision of the British government to import and use unchecked blood and blood products in the UK right up until 1991 was a terrible mistake.
But for those products to continue to be used for several years after the potential dangers were known is nothing short of neglect.
Former Royal Free patient Bruce Norval, was infected with hep C through blood factor treatment for haemophilia.
He has spent the last 25 years campaigning to bring information to light and gave evidence to Scotland’s Penrose Inquiry into contaminated blood.
His unflinching belief, after decades of research, is that doctors knew of the risks from a virus then known as non-A non-B hepatitis in blood products and continued to give it to haemophiliacs to see how infectious it was. He says the Nuremberg Code, governing research ethics for human experimentation, was broken.
“Documents used in the Penrose evidence describe haemophilia blood products as ‘mass inoculation’,” he says. “The idea was to find out how much disease they could expose people to before it became a problem to the general populous.
“It was a nasty germ warfare kind of experiment.
“Penrose did say that the Nuremberg Code was broken, the research was done illegally. He said it was ok because everybody else was doing it, but he didn’t deny it was happening.”
Even if the risk of contracting viruses had to be balanced against the risks of non-treatment for haemophiliacs, he and many others believe the choice should have been theirs. Victims say there was no informed medical consent.
If, since then, all had been done to make the lives of those poisoned as simple and pain-free as possible, this would probably be a matter that could be consigned to the history books. But this stain lingers.
While it may be too late for criminal prosecution to be brought against anyone found to have been involved in those early, ill-fated decisions, it is entirely understandable that campaigners feel bitter at a lack of accountability.
Female haemophiliac Colette Wintle did not receive regular treatment, unlike male sufferers, and so has been able to trace the infected batches of factor VIII blood clotting treatment she was given, including one at the Royal Free Hospital in 1985.
The 55-year-old, who contracted hep C, says: “This batch was known to them to be infected because I subsequently took a case up against the manufacturers in the States and the lawyers confirmed that the batch they gave me was on the list of contaminated batches in America.
“At that point the haemophilia doctors’ organisation had had discussions about taking the products off the shelf.
“In many cases doctors just continued to use up the product even though they knew it was going to infect their patients.”
Twenty years later she confronted a doctor who had treated her at another hospital. “I said ‘But you must have known these products were infected by then?’” says Colette.
“And he actually looked me square in the eye and said ‘Yes, but it was an oversight, I forgot to tell you about the risks’.”
We support the campaign group’s calls for a public inquiry into the events that led to the tragedies to ensure lessons are learned.
The least these people deserve is to have their day in a public forum.
But what good is an inquiry if sufferers and their families have to continue to live in poverty because illnesses caused by government mistakes make them unable to provide for themselves?
In the Republic of Ireland, victims received an acceptable lump sum payment for their agony and pain, along with regular support. That should happen in England too.
It is estimated such a payout would cost £1.5billion, roughly the same compensation given to victims of the Equitable Life financial scandal.
On top of this, consistent levels of financial support need to be given to hep C sufferers, no matter how serious the government believes their health problems to be.
That also needs to apply to widows and families.
It is too late for the devastation caused by this scandal to be undone. But, with a new government in place, it’s about time some of the damage is at least repaired.
See next week’s Ham&High: How safe are blood products today?