This week the Trust attended for the hearings with Professor Christine Lee, who in addition to other roles at other hospitals, was initially a Senior Research Registrar, a Consultant Haematologist and then later a Director, at the Royal Free’s Haemophilia Centre in London, between 1983 and 2005.
Haemophilia Clinicians Hearings
At present, and over the past few weeks, the Inquiry have been questioning key witnesses involved in various haemophilia centres across the country, as part of seeking better understanding of what was known and what was (or was not) acted upon by clinicians and others in addressing it, as it became increasingly clear that people were being infected with “non-A, non-B hepatitis” (later identified as hepatitis C) and then HIV, along with other infections, including a later potential threat of vCJD.
It is estimated that 5,000 people with haemophilia were infected through blood products, mainly Factor 8, which is made from blood plasma from multiple donors, much of it imported from high risk populations in America, and which was provided by the NHS in the late 1970s and early 1980s. 3,000 of these people have since died.
This was set to be a tense hearing from the start, after remarks she had made in 2015 to the Royal College of Physicians in interviews as part of an oral history project.
Haemophilia Treatment in the 1970s and 1980s
The scene setting for this was drawn from on the Inquiry’s chronology of the use of blood and blood products and the risks it posed (see here for the full transcript of the Inquiry’s “Knowledge of Risk” presentation) which we reported on in September. It was extremely clear from this that increasingly loud alarm bells relating to the use of blood and blood products had been ringing since 1943.
Much time was spent in exploring her various roles and involvement working in the area of haematology/haemophilia which provided considerable insight into the development of the centre at the Royal Free and the clinical developments in treating haemophilia with differing blood products over the years.
Professor Lee described how she’d initially been brought into the Royal Free to research liver diseases among haemophilia patients. Since 1943, clinicians had been seeing patients who’d received blood and blood products developing liver problems. Although these were being monitored, it is less clear what steps were taken to limit the damage that they were known to cause, if any. And if not, why not.
She also described a very different environment to the one we would expect in a hospital today. For example, everything was on paper with no, or only very primitive, computers, medical notes were kept in hanging files, research and other documents were stored in filing cabinets with index cards. Importantly, the need for consent from patients – including what happened with their blood samples – was very different to what’s seen today: samples were stored for research without patients’ knowledge, and even tested for HIV without their knowledge or consent.
There was much discussion about the different treatments, derived from blood plasma, that were used. It was clear early on that the NHS-made blood products were viewed differently to commercial alternatives: these were created from smaller pools, and Professor Lee’s testimony that “the parent’s instinct” was a preference for NHS products to be given to their children suggests safety concerns about the commercial options from a very early stage. Supply for children was also easier to manage as they required smaller quantities. Adult patients were continued as much as possible with the same type of treatment they were already on but there was not a sufficient supply of NHS blood products and so commercial products were increasingly used.
The introduction and impact of Factor 8
Professor Lee described the early impacts of new haemophilia treatments, which offered an easier, quicker and more effective way for people with haemophilia to manage their condition. She offered less, however, about why patients weren’t informed of the risks or even often what was known about their health; the Inquiry posed the suggestion that haematologists should have known by at least the end of the 1970s of the risk of serious liver disease as a result of “non-A non-B hepatitis”.
Having initially stated “Of course, all those patients will have been told that they – back in ’78, ’83, they will have been told at that stage that they had had non-A, non-B hepatitis, so they knew that. And every time they came for their review, they would be reminded of that”. She was visibly shocked when many of those attending started to shout out “liar” and “no we weren’t” but it was clarified this was an assumption, that she had not started work at the Royal Free at this point.
She also described the impact of HIV in the early 1980s and how that quickly and completely “overwhelmed” the whole country, with tragic consequences for people with haemophilia who’d been exposed. There was definitive evidence of HIV/AIDS being transmitted by blood transfusions in 1984, but the Inquiry suggested that a collective view was already forming amongst haemophilia centre directors about the risk for haemophiliacs following an earlier article about it in January 1982.
In a letter to a colleague in 1983, she said “I do have a nasty feeling that NHS concentrate is going to turn out safer”. Indeed from 600 samples tested in late 1984 at the Royal Free, no children were found to have HIV (and neither were the few adults at the centre who had for various reasons continued to have NHS concentrate), but 111 people, mostly with haemophilia A (a more severe form of haemophilia causing a lack of clotting factor 8), were found to have been infected by commercial products. Six months after the letter, however, Lee co-authored a scientific paper concluding the process of making the concentrates rather than the donor source was more likely the cause of “immunological abnormalities” seen in haemophilia patients.
Near the end of the hearing, as was anticipated by all attending, she was asked to reflect on the comments she had made years ago in interviews where she suggested patients were “probably just after the money”.
She elaborated on this saying, “I think that compensation is the wrong thing to do because it suggests liability. And I think at the time I …I was feeling particularly aggrieved, and I think it would not be appropriate to tell the Inquiry who this patient was. But I was particularly aggrieved because a patient had received – and this was hearsay of the amount – but had received £80,000 as an out-of-court settlement. And I had been asked about this case, and I had seen the notes, and if that had gone to court, I think it wouldn’t have shown any liability. And I was feeling aggrieved that the National Health Service had paid out this money really that was unjustified.
[…] I think the idea that we would – anyone who is a decent person would give somebody some treatment that they knew would cause harm is frankly ridiculous. And it’s actually quite hurtful for those people, those many people who cared for patients. […] I really don’t want people to think I’m a hard, unsympathetic person because I’m not. These people have always been part of my life. They’re still part of my life […] It was the saddest tragedy of all, but I think to suggest culpability is wrong”.
But for those infected, their partners, families and widows who were attending, who we spoke to on leaving this hearing, many in tears, others full of rage and disbelief, and from the messages we have received from others since, it was painfully clear that they felt otherwise.
Much was left unanswered and much was perhaps unknown, but there was an admission of something that she withheld as she felt it was inappropriate and it was left unclear as to whether this was relevant or not to the work of the Inquiry. As a result her testimony must have been extremely frustrating and hard to hear for those infected and affected who have waited so long for answers and explanations. In addition to that, she made little attempt to reach out to those attending in a personal way to acknowledge the devastating fall out they have all had to deal with over many decades, which may have perhaps conveyed a little humility and understanding of what they had all collectively been through.
To read the full transcripts of these hearings, please see here and here (or you can view online on the Inquiry website and for general news on this case see here and here.
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