21 September 2022: Scottish Govt Decision Making 1970s to 1990s (Presentation) - C

Counsel continued with the matter of screening for AIDS, picking up the situation from mid-1985. The aim was to introduce screening process at the same time across the UK. Pressure continued to mount as press interest kept featuring in the mix.

Another topic was introduced, being the response to Non-A Non-B Hepatitis (NANB-Hep) which became HCV. Counsel referred back to previous oral hearings as the background to this segment of the presentation. The significant exploration point was the growing recognition of the risks associated with a “post-transfusion Hepatitis”, especially with large pool products. These incidents featured both HBV and the unidentified NANB-Hep. The latter was described in 1986 as a “medley of conditions” by Dr Forrester (whatever that means). It was confirmed that virtually all people receiving pooled blood products (“virgin haemophiliacs”) were being infected by NANB-Hep. It was described as being similar to AIDS, although some Government officials, most significantly Dr Forrester, challenged this. The PhD thesis of Dr Dow was used as part of the justification. It was noted at the time that there were 154 cases in Scotland of NANB-Hep (18 per 100,000) with most of these being people who were IV drug misusers.

The introduction of surrogate screening (ALT testing) was considered secondary to carrying out further research into the subject first. In June 1986 Dr Forrester wrote that NANB-Hep was a “residual rag-bag” (what?) and “relatively benign” (yeah, right), so clearly there was no need for “panic measures” which he said should be avoided. This despite the US already going down the testing route. His opinions seem to have become the received wisdom in Scotland. By 1987 there was a recommendation from the Directors of the Scottish National Blood Transfusion Service (SNBTS) to the SHHD to introduce surrogate testing. By 1988, little had advanced, despite some concerns that SNBTS Directors would go ahead anyway with surrogate screening. They did not but reserved their position until things had developed in the rest of the UK. (It sounded like the SHHD were hoping they would do it and so not require more central funding; or is that just cynicism talking?) The collective hesitancy was overtaken by events when the identification of Hepatitis C (HCV) was confirmed.

This new viral identification correlated to the setting up of two additional groups between 1988 and 1989; the Advisory Committee on the Virological Safety of Blood (ACVSB), and the Advisory Committee on the Transfusion Transmitted Diseases (ACTTD). One key focus was the aim to achieve a UK-wide approach to screening, as happened with HIV testing. Officials appear to have agreed that between them and did not immediately inform their Ministers. A Guardian article prompted a Ministerial briefing which sought to undermine (i.e. minimise) the alleged seriousness of HCV.

Another briefing concerning the introduction of testing for HCV, given that testing was considered inevitable, included the usual warning about the lack of new money to actually do it. There were still comments that the introduction of testing was not being done for purely scientific reasons, including a reference to the HIV Litigation situation. It was noted that the HIV litigation included the assertion that testing was not introduced soon enough, and this fear of litigation was influencing decisions about HCV, despite the statement that HCV was “not such a fatal condition” as HIV. (This writer thought that a fatality was a fatality, and it was only a figure of speech that a person could be “half dead”.)

The proposed UK start date for routine screening in 1991 was pushed back from 1 April to 1 July 1991, then another push back to 1 September 1991. It was noted that Prof Cash wrote about how SNBTS Directors were struggling to meet the 1 July date, mainly due to funding issues (yawn). It is unclear at what point Ministers were informed of the shifting sands in the timer to which HCV safety was being tied. In July 1991 it was highlighted that evidence existed of the potential for sexual transmission of HCV. From this new risk-laden knowledge, Ministerial approval was announced to begin HCV screening in Scotland from 1 September 1991. The Minister was Michael Forsyth.

Counsel noted there was a section in the document supporting the presentation which covered the matter of sourcing blood from Scottish prisons. Rather than cover that in the oral presentation, those with a particular interest in that topic were invited to read it there.

The final topic for the day was that of compensation, litigation, and financial support. In early 1987 the Government became aware of the calls for compensation to be given to haemophiliacs due to their infection with AIDS. A displayed document demonstrated the policy decision previously  presented to the Inquiry of the Government not accepting the case for compensation. Later the position shifted by making haemophiliacs a “special case” leading to the beginnings of acceptance of the need to provide ex-gratia payments, itself leading to the setting up of the Macfarlane Trust. The financial arrangements were extended by Ken Clarke, but without the foreknowledge of Scottish Ministers or officials. SHHD officials sought to find out if Scotland had to contribute to the additional monies since they were not included in the decision. It was agreed Scotland would have to proportionately contribute.

The HIV Litigation actions saw claims being lodged in the Scottish courts from 1988. The view taken was to defend the actions, just like in England. Advice was provided to the Minister following a Daily Record article, “You Gave Us AIDS”, (6 January 1989). Summonses had been issued to the Secretary of State by 13 haemophiliacs. The advice to the Minister, if asked to comment, was to follow the rebuttals inherent in the UK lines to take. An announcement by the PM to settle in England came as a surprise to Scotland. Scotland were not aware that negotiations had even been initiated and were not made aware that an announcement was to happen. It created significant problems for the Scottish cases. Scottish legal processes were (are) different, and it would take additional time to achieve a settlement of some kind. Westminster wanted the Scottish cases to be settled quickly, but there were a number of issues to be overcome due to the different legal systems and ways of pursuing cases. This involved negotiations between Ian Lang, Secretary of State for Scotland, and William Waldegrave, the recently appointed Secretary of State for Health at Westminster. While agreeing to the additional time, Mr Waldegrave emphasised the need for the settlements to match across the UK. In other words, the Scots could do their legal stuff, but it had to produce the same result, including on categories of payments and amounts. No doubt the meeting to discuss this happened in a bouncy castle.