31 January 2023: Closing Statements, Simon Bowie KC (NHS Scotland) - B
A sub-section called “Responses to infections” was the returning focus for Mr Bowie. The key dates relate to 1984 for HIV and 1989 for HCV in terms of testing capacity. Further the topic was in relation to patients being informed, or not, of their diagnosis, to issues like counselling, testing, and the way clinicians were largely left to their own devices. People should have been better supported, including through the central production of guidelines. The recent Covid experience was in stark contrast regarding the coordinated responses across the country. The boards have accepted how their responses were “deficient in a number of respects” for contaminated blood. The delays were “unacceptable” and the boards are very sorry for this.
The December 1984 meeting in Edinburgh was of particular concern. It was “regrettable” how this was a way people found out about their infected status and the board expressly apologise for this. Mr Bowie reiterated the deep regret at the delay and inevitable suffering which was caused to patients and families, and so again publicly apologised. It was an “object lesson” in why it is not right to leave so much on the shoulders of individual clinicians. The boards are sorry that clinicians were not better supported.
The stigma issues caused by poor or lack of policy was also a matter for regret, and there was mentioned the example of porters refusing to transport children with AIDS. Stigma compounded the harms and aggravated the suffering. In relation to transfusion infection, it was mentioned how this route affected so many women, such as during childbirth. Patients were linked to certain risky behaviours such as drug misuse and unsafe sexual practices. These accusations caused further harm and stigma. Also, the delays in informing people about their infections caused additional harm as people had been living with health issues with unknown and potentially unsavoury suggested causes. These delays were also a matter for specific apology by the Scottish boards.
Mr Bowie moved to the matter of related recommendations – both those from his clients and those from others, in particular Mr Dawson on behalf of the majority of Scottish core participants. Recommendations are important, not least because many people are still patients of the NHS in Scotland. He pointed to the list of specific recommendations contained in his clients’ submissions. Another set of (seven) items was provided in summary covering matters such as early reporting of adverse events, specialist psychological support, specialist physiotherapy provision, regional networks of haemophilia clinicians, the production of guidelines, clinical audit, and the prescription of recombinant products.
On the recommendations from Mr Dawson on behalf of Thompsons Solicitors, many of these recommendations are supported by the boards. It was suggested that some might be require modification in order to achieve the goal intended by them, such as the matters related to palliative care. There are some Thompsons recommendations which are already a matter of improvements having been made. The boards stand ready to continue to support the Inquiry in any way to advance its work.
The third focus of the closing statement related to the SNBTS-specific issues. These are again at a necessarily high level. It included a focus on what went wrong, and in this respect, SNBTS sincerely apologised to the infected and affected in those areas where it “fell short”. The content of Mr Dawson’s submission had been carefully reviewed and was accepted in many respects.
On blood donations and donor selection, SNBTS has accepted how it fell short in relation to the risk of blood being collected from IV drug users. This cohort should have been excluded since the viral risk was known about in relation to HBV in the 1970s. Mr Bowie apologised for the delay in excluding IV drug users sooner. For blood collections involving prisoners, this had begun in 1957. This should have stopped much sooner, perhaps as early as 1975. Again, SNBTS apologised unreservedly for this. The clients agreed with the points on voluntary donors made by Mr Dawson based on the “Precautionary Principle”. On the AIDS leaflet, SNBTS regretted the fact that the leaflet was only used in Edinburgh and not in other areas and apologised for the difference which was not corrected until much later. Mr Bowie reported agreement with the content of Mr Dawson’s submission related to donor engagement. His clients undertake to continue its engagement, including in the context of modern technology options.
Surrogate testing issues were next covered. The questions around effectiveness were acknowledged. SNBTS supports studies to resolve the problems, while recognising the issues around funding. It regrets that studies were not carried out when these matters were impacting patients. On balance, SNBTS asserts that testing should have been initiated on a precautionary basis. Surrogate testing would not have eliminated the risks but would have mitigated them to some useful extent. The difference with the submission from Mr Cory-Wright was seen as justified due to the different contexts of drug misuse between the countries. The SNBTS accepts the criticism of Mr Dawson about it not properly communicating with the Government on these matters, and so the organisation again apologised for that particular failure.
On HCV testing and delays related to this matter, on reflection the two-year delay is “difficult to understand”. It appeared to be caused by a delay in decision-making. As noted in the final Penrose report there had been delays, and for this reason SNBTS again apologised for these failings.
Donor screening policy is ultimately a decision for Ministers. Risks are currently very low, but because the assay tests have not been able to guarantee elimination of risk due to limitations of sensitivity, SNBTS supports the Precautionary Principle approach on all aspects of blood, tissue, and cell safety. They agree with Mr Dawson on the early adoption of new donor tests, while re-stating the resource factors particularly under the current circumstances of severe financial constraints. “Cost-effectiveness” continues to be a key facet of Government decision-taking.
Next it was the turn of look-back to be reviewed. The timeline of past efforts were briefly reviewed with the conclusion being that “look-back could and should have been attempted throughout Scotland from September 1991”. He noted the resource issue again, but also the decision from the UK bodies not to pursue a look-back. Returning to the present day, it was noted that a full look-back is a costly and challenging undertaking since it involves a system-wide approach (blood services, public health, clinical specialisms, primary and secondary care, and Government). UK legislation does not currently mandate or even describe the circumstances for a look-back. The Chair was invited to consider what might be the appropriate circumstances and guiding principles related to future look-backs (… if that is not a too unwieldy contradiction in terms).
The Scottish option of a population-wide testing process was couched in terms of the cost and what else that money could be used for. This is familiar go-to reasoning related to matters that are seen as “too hard to do”.
Another topic, the Protein Fractionation Centre (PFC) in Edinburgh, stuck its head above the evidential parapet. This included the perhaps missed opportunity to use the facility’s capacity to fractionate English-derived plasma. The comments on this included the prospective investment in site development to allow for this arrangement, and the necessity of a move to shift-working patterns (… clearly there are still some unfinished battles scattered around this area in some peoples’ eyes).
Viral inactivation was not an issue in the SNBTS submission but was for Mr Dawson, so Mr Bowie’s clients wanted to respond. The developments of both 8Y and Z8 were reviewed very briefly. Significantly, the manufacturing process were not the same. There was the matter of securing a small supply as raised by Mr Dawson. SNBTS recognised the “force in the argument” presented by Mr Dawson and accepted the criticism levelled. This produced another use by Mr Bowie of the word “apology” (… which was becoming an unexpectedly common and welcome feature of this statement).
There were a few comments on product labelling, information, and warnings. It was acknowledged how this was mainly aimed at prescribing doctors. The warnings were not explicit enough about HIV and viral hepatitis in particular. SNBTS accepted the criticism about how more junior doctors would have benefitted from better labelling, and that home treatment could have produced labelling more suited to non-clinical users. The labels were consistent with practice at the time, but the issue was worthy of another apology.
Blood collection and use considerations must bear in mind the needs of both donors and recipients. The supply relied on the free-will giving of blood by citizens. In relation to organs and tissues, this is more a UK resource when it comes to the concept of self-sufficiency. Despite generalised claims, the actual achievement of full self-sufficiency in blood supply is elusive.
Finally, the matter of transfusion practice was raised. It included a history of there being considerable variety in practice in the use of blood when it was not really needed, and issues of consent. Mr Bowie recognised the considerable improvements in all aspects of blood supply, but also noted that there were also areas for continuing development, including on informed consent.
In conclusion, Mr Bowie stated how his clients looked forward to receiving the full Inquiry report.
The Chair noted the candour of the statement, including the more specific detail on what was the subject of the apologies. This observation elicited a round of applause.
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