20 January 2023: Closing Statements, Karon Monaghan KC (four infected clients) - B

After the break, Ms Monaghan jumped straight back into the parallel universes between what was becoming known and what was happening in the treatment of patients. There was a glaring absence of central standards. Different clinicians pursued their own treatment protocols. It was not seen as a case of one or two rogue doctors doing wrong, rather it was a whole system failure. There was a gross minimising of risk with the concern being that the interest was financially focused rather than patient facing in relation to their care or safety. This was not just the behaviour of the commercially motivated pharmaceutical companies, but also the clinicians – whose potential conflicts of interest may have been a factor. The blood services were also put in the firing line. They could have been a safety net against the headlong rush towards a concentrate-only regimen, but they were not up to the job.

 

Patients appeared to be a secondary consideration. They were not given information or the respect they should have received, including under the various international conventions reviewed previously. Misinformation was widespread. Clinical freedom was put above patient choice. Stigma was inevitable given the State’s communication strategies to degrade people with viruses as associated with drug use, sex workers, homosexual men who did not use safe precautions, and immigrants. There was a discrimination between “good patients” (those who had “innocently” been infected) and “bad patients” (whose chosen lifestyles had caused their own infections). But being an innocent patient did not seem to bring any advantages.

 

The language used about patients was dehumanising. They were “useful material” for studies, “cheaper than chimps”, objectified as commodities in academic exercises, subject to unconsented tests, not told of the results of tests, having their blood and tissues retained unknowingly, putting partners and family at risk, and so significantly reducing their bodily autonomy, not to mention the loss of dignity. There followed a brief conversation with the Chair about knowledge and timelines for testing.

 

At the point of being told that a viral infection had happened, patients were left abandoned, unsupported, stigmatised, avoided, ostracised, and vulnerable. Credit was given by Ms Monaghan to some of the non-haemophilia-related support bodies such as Mainliners and the Terence Higgins Trust who were themselves operating in an environment of stigma and prejudice. People were told by their clinicians to keep their viral status a secret. Infected people were told they had been “unlucky”, particularly in the context of the influential paper saying there was a one in a thousand chance of AIDS infection, which was not swiftly corrected when the weight of evidence highlighted the actual risk levels. One of Ms Monaghan’s clients was a child when infected and the way he discovered his infection was nothing short of negligent and horrific.

 

On the topic of care and support – or lack of – the experience of patients after being told of their infection status was wholly inadequate. The schemes were unhelpful in ways that caused further harm and distress. Prof Christine Lee was criticised for opposing even the establishment of support schemes since it would harm the clinicians who would obviously never administer a treatment that would harm a patient (oh really). They did, while she remained ignorantly irritated. This was not an isolated case of heartlessness or attitudinal ineptitude, since there were also the “what would it look like to the Daily Mail readers” type of comments. The Schemes themselves were criticised unreservedly by witnesses as rehearsed by Ms Monaghan.

 

On the topic of accountability, it was noted that the vast majority of the key actors were employees of the State. Even the private sector actors ought to have been overseen in their activities by the State. The responsibility was to ensure safe and suitable healthcare, including that provided via private bodies, but the State failed in that crucial role. There was too much reliance on the practicing clinicians to guide Government when their inputs could not be without a conflict of interest. Evidence was used selectively and the sharing of that was controlled by the tainted experts. The self-sufficiency plans were disappeared. Blood services were not up to the task of collecting or producing sufficient or suitable products in a clean or safe way. Similarly, licencing systems were not good enough. There was “covert bribery” when the treating clinicians were acting as treating doctors, researching academics, consultants to the private companies, and advisers to the government, including on matters of purchasing.

 

The final point was that of “stigma and Ministers”. The prejudices were demonstrated by, for example, the views of key players such as Margaret Thatcher. The fear of recognising and highlighting issues was seen as potentially putting ideas into young people’s heads, and so this fed into the idea that infected people were all dirty and undesirable; not appropriate as conversation in polity society. The personal views of Ministers were asserted as being very influential in the resulting way that infected people were treated by society and statutory services. The stigmatisation came from the top.