18 May 2022: Connor - B

For Dr Connor, it was back to information for patients, firstly a document from 2004 which talked about why people were contacted and told the same thing, despite different affecting circumstances. Dr Connor had to admit the weaknesses in risk assessment in these types of situations when there were so many unknowns. This seems to be an unresolved public health problem, given the debates over Coronavirus/Covid-19 statistics and their interpretation. The information could not be individualised, so the messaging was fairly (unhelpfully) standardised.

There was no specific fund for counselling related to vCJD. It was up to the individual hospitals and their ability to access this type of professional support; or not access it, as the case may be. The witness did recognise the difficult nature of the vCJD message. Counsel then referenced the timing for patients with bleeding disorders who were still dealing with the fallout from HIV and Hepatitis. Dr Connor recalled there having been a funding request from the UKHCDO. However, it was not for counselling but for their database.

A Westminster Committee criticised notifying people by letter, given the potential seriousness of what they were being told. The witness was flapping like a fish out of water as she tried to explain away what was clearly a misjudgement on her (team’s) part, and a lack of pre-emptively setting up the required opportunities for face-to-face consultations with associated counselling opportunities. Dr Connor seems to be shifting the blame to Haemophilia doctors for not making themselves available at the same time as envelopes were dropping through letter-boxes. As an aside, is there clarity over what people were meaning by “counselling”? There is a possible conflation of the professionally trained and accredited work of a qualified psychologist (usually), as opposed to the so-called counselling offered by a clinician which is not based on rigorous standards and is more like a bedside manner approach – with all the variabilities of that situation. Given the history of viral diagnoses being given in corridors and busy waiting rooms, the chance of having the ideal environment for disclosing and explaining the complexities of vCJD were integrally tending towards zero.

A series of statistics were reviewed illustrating the apparent relationship between the numbers of latterly identified vCJD blood donors, the subsequent identification of contaminated batches (if possible), the variable capacity of local areas to link batches with patients, and then to track down patients. Some of the gaps between the original treatment with implicated blood and the notification of potential exposure could be a matter of several years. It meant that many people were never tracked down and told. Where are they now, and how are they doing? If they were infected and have become symptomatic, are they now being treated like haemophiliacs who were labelled as alcoholics, workshy layabouts, complainers, hypochondriacs, and other such prejudicial assumptions?

The ”de-notification” exercise took place in 2013, a year after Dr Connor had moved to a new job.

The final area of questioning concerned surgical instrument quarantining after use on a vCJD notified patient due to the risk of prion transfer. The costs involved led to cases of some patients being denied a required procedure since it would effectively put a vital piece of surgical equipment out of commission. The guidance on withdrawing items if equipment, for example for endoscopies, came from the Panel. This was in the context of there being already established protocols on the safety standards and good practice sterilisation processes for surgical instruments. Previous evidence from patient core participants had highlighted a number of difficulties this had caused, including not being put forward for procedures, unhelpful comments about costs made to patients on trolleys, the stigma of being identified as a person at risk of a notifiable infection, the extra precautions taken, and more.

All that remained was the questions from core participants, but these would have to wait until after lunch.