19 January 2023: Closing Statements, Katie Gollop KC (Haem Soc) - A

Katie Gollop KC confirmed that she was representing the Haemophilia Society (HS) and a number of named and unnamed individual core participants. She began by reviewing a selection of incidents experienced by her patient clients. These included the death of an eight-year-old whose parents discovered his viral status from a piece of paper on a hospital fridge door. The clinicians explained that they did not want to affect the relationship with their son by knowing. The other stories were equally harrowing, including the infection of people associated with the HS. In particular, the role of David Watters and his work with the HS was stressed as have being of great benefit to many people.

 

Not for the first time this closing statement began in earnest by quoting Bishop James Jones from his writing related to the Hillsborough disaster. The parallels were clear. The Cumberlege Report, “First Do No Harm”, was also cited. The “system is not good enough” was among the conclusions related to the UK healthcare organisations. Specifically, the report was quoted in relation to treatments which were withdrawn due to the problems for patients. The background to the harms being recognised and responded belatedly were too close to the situation for infected and affected people to go unnoticed. Added to the list of generic problem issues, Ms Gollop added the harsh manner of the so-called support bodies, and the handling of deaths.

 

The Inquiry was thanked for their kindness and professionalism. It has been “the best of best”. In particular, the Chair’s own attention to detail and responsiveness to the core participants, if it could be transmitted to the NHS, would remove possibly all of the issues related to the Inquiry.

 

The minimal statement by Ms Grey on behalf of the DHSC was reviewed. Without criticising the KC herself, the fault lay squarely with her client. That included politicians and civil servants right up to the Prime Minister. The very late announcement of the change of time and length for that statement caused speculation that maybe it was to make a major announcement. But after the reality hit, Ms Gollop called it a waste of peoples’ time. The HS now stands with the calls by Mr Snowden to have an interim report for additional interim payments. It seems like the Government will do nothing unless the Chair specifically and formally calls for it. The recent actions of Government were reviewed based on official statements. The fear is that the Inquiry report will be as ignored as the Hillsborough panel document.

 

The need for patients to be listened to was stressed as a way of helping to make reforms actually work. The another need was a call for transparency. Thirdly, rather than spend time on planning to contact and speak to people, the Government should recognise how they (we) are already available and ready to speak with, including at the Inquiry.

 

On the historical matters, the HS did not want to evade scrutiny. Ms Gollop made reference to documents which had influenced the HS on the messages it sent out. It was restated that the HS was never in the business of accepting the death of any person for any kind of greater good outcome; and that included discussions on eugenics for haemophiliacs. The high costs of haemophilia treatment was a factor in past decisions, and thus the expert advice had to be seen as having been influenced by that matter. The direct costs of commercial purchases had to be balanced against the indirect cost savings from proper and safe treatments early on. The healthcare provided was a matter of Government decisions, mainly financial decisions. Haemophiliacs became dependent on imported factor concentrates. It was not a relationship of equals when the HS was involved with Government. It was the Government’s responsibility to engage with patients and their advocate groups.

 

The HS recommendation at the time to move from cryoprecipitate to concentrates was reviewed. It included recalling the pain of untreated bleeds. But while cryo gave you a long life, concentrates gave a full life, or so it seemed. The HS had previously reported on the risks of commercial products to its members. The Haemophilia Centre Directors were the ones pressing for the total switch to concentrates. David Owen was the Minister when US imports were approved, but the plan was to get to self-sufficiency quickly. Of course, this never happened as planned. This writer questions the value of pressing the self-sufficiency argument, since the evidence has demonstrated the vulnerability of voluntary UK donations to viruses.

 

An excerpt from the 1975 World in Action programme was shown which endorsed the benefits of concentrates above the pain of bleeds. The featured contributor families admitted knowing the risks and hoped for the move to UK donated blood only. This writer continues to be uneasy about the focus on the old “US bad, UK good” trope. How can taking this direction be helping?

 

From 1975 the leap was made to 1983. The timeline of developments in viral impacts as produced by the Inquiry was praised. Ms Gollop then sought to contextualise the advice given to the HS by such as Prof Bloom. It squarely identifies Bloom as knowing better but not disclosing key facts to be passed on to HS members. Bloom was also a trusted adviser to Government at the time. “He abused the Society’s trust”, she said. Prof Craske was also brought into the firing line. The Mail on Sunday article by Dr Pinching which followed the tv broadcast was from a non-Centre Director clinician and was considered to be more honest, thus illustrating the absence of full honesty by those advising the HS who perhaps had vested interests in focusing on concentrates as the preferred treatment. The balancing of risks and the practicalities of obtaining sufficient supplies seem to be sufficient to stick with the course as advised. Ms Gollop noted that not a single clinician contacted the HS to advise differently from what had been published based on the expert advice of Bloom, et al from the UKHCDO.

 

Another selection of tv clips from the “Bad Blood” programme was shown featuring among others, John Prothero, a haemophiliac who subsequently died and whose wife is represented by Ms Gollop. The emphasis on bleeding and pain prior to concentrate treatments was stressed in the clips. But then the horrendous infection rate of haemophiliacs contracting AIDS was featured. The underlying message was the dilemma of the (underplayed) AIDS risk and the quality of life benefits of concentrates. It was as if cryo or other options never existed. From this line of argument it seems people were being offered a very hazardous Hobson’s Choice. Or was that the stark choice either to stay in the frying pan or jump into the fire?