18 May 2022: Connor - A

The Royal Courts of Justice were clear of cameras this morning, so no wagstravaganza on the pavement. It must be Botox day.

The numbers attending the oral hearings is up to about two dozen today (barring lawyers and Inquiry staff, with no conspicuous journalists in their seats, again). The expectation is of around 60 attendees for Thursday and Friday this week.

Dr Connor’s CV routed up to her having the lead responsibility for CJD at the DH in 2000. She attended as an observer on the dangerous pathogens group, and a technical adviser to SEAC. She was Head of the CJD team up to May 2012, during which time it came under the auspices of the Health Protection Agency (which has since been renamed again as the UKHSA who are leading on Coronavirus/Covid-19). They were a NDPB (a quango) but she says they were not really independent of the DH. The DH ran the Secretariat. Early doors, the witness demonstrated an amazing inability to  explain (i.e. understand) or recall the decision-making power structures involved, despite her leadership role. She is no longer in the role, but is still working in the field.

The notification issue kicked off the actual evidence. Her CJD team led the efforts to coordinate the written material for various people, for example, haemophiliacs who were considered to be at risk of vCJD due to possible exposure through product treatment. The CMO set up the Panel and had to approve any outputs (information, framework document, etc.) The witness could not remember if other parts of the DH had a say over content. The framework document was published in 2004, although there were iterations of it before that. There was a desire to get it out as soon as possible. Some earlier versions that were disseminated had sections of text greyed out. The main delays were related to the risk assessments.

An incident of infection was said to have potentially infected up to 40,000 people. The policy was to not take blood from anyone identified as at risk of vCJD exposure, and to tell them why. Other countries were apparently happy to take the blood but not use it, rather than cause anxiety by having them labelled as at risk of a public health notification matter when the risk was very low, and no test was available. So, what was the “right” thing to do? Answers on a postcard to PO Box 999.

The patient information sheet from the December 2003 notification was brought up again, the one with sections broken up by questions people might have. It included the statement that the risk was low but might unfortunately cause anxiety. The potential to pass on the infection (if they had it, which apparently, they probably didn’t) was stated to be a “small possibility”. It was acknowledged that the messaging changed as more become known about the hazard. Prof Collinge’s frustration at people not being offered specialised support reared its head. The witness mentioned how so many people were older (patronising/paternalism alert) and it was felt the local GP was best placed to provide information to notified patients. Counsel reflected, therefore, that the information to GPs was significant since they were the gatekeepers. The witness could not remember if the GPs were made aware of the Prof Collinge service in 2003 when the notifications were going out, but she did see a document from 2005 suggesting they had updated by then. So, Prof Collinge’s concerns were vindicated. The DH planning and processes were inadequate and too slow to get going. Quick, shut that barn door, the horse has bolted. We need to appear to be doing something and shutting doors is something we are very good at.

There was an obvious debate about the ethical rights and wrongs of notifying people of the risk of their exposure. The experts could not agree, so it seems there was a gap in pre-emptive thinking. Therefore, the problem of telling or not telling patients about infections was not only an issue for bleeding disorder folks and the unlucky whole blood infectees who got HIV, viral Hepatitis, etc. who so often were not told for weeks, months or even years. The fact of vCJD also touching the lives of the bleeders was just another brick in the wall. It is still the first session of the day, but the witnesses’ lack of recall is already only matched by her inability to justify decisions and actions (or inactions) under her watch. What Dr Connor could say was that she had certainly paid great attention to the oral evidence of Prof Collinge and Dr Ironside.

The HPA continued to use the GPs as the point of contact with their patients who were potentially exposed to vCJD, even when the level of risk could no longer be safely stated as simply “low”. The witness continues to struggle to recall documents and discussions, even though these were within the last 20 years. And with her continued work in the related field, she still has ready access to relevant documentation. Other witnesses have done a sterling job at recalling events from over 40 years ago; though to be fair, some of them were quite selective in their memory feats.

The notification activity was run in parallel to a process of informing various bodies such as the Surveillance Unit, blood collection services, etc. Then it was a case of identifying affected patient groups. There was a stratification of the likelihood of recipients’ relative risk (high, medium, low).

SCIEH was the Scottish equivalent of the HPA at the time. The biggest patient group were those with bleeding disorders, and it was reviewed how the UKHCDO was pivotal to the decision to notify all of that patient group under the umbrella approach. It was also recognised that the bleeding disorder cohort would be easier to trace than other patient groups due to the unique and relatively frequent relationship with Haemophilia Centres. The 1% threshold was calculated based on a number of variables and levels of assessed exposure risk. By December 2004, there were known to be nine plasma donors who had subsequently been discovered to have vCJD. A total of about 4,000 bleeding disorder patients across the UK were caught up in the exposure risk.

There was an added complication when it was decided to offer people the choice to know or not to know if they were recipients of an implicated batch. Dr Connor spoke about the perceived level of risk at the start of the process which was later discovered to have not infected very many people at all. But recalling previous evidence, the inability to get funding for a prevalence study means that there may be many more people in the population who have spend years being blissfully asymptomatic, and therefore riskfully ignorant of their being part of an ongoing but unidentified transmission ecosystem. I’m not sure if this counts as a “known unknown” or an “unknown unknown”.