19 January 2023: Closing Statements, Andrew Kennedy KC (UKHCDO)

If this were a pantomime, the United Kingdom Haemophilia Centre Doctors Organisation (UKHCDO) would surely be one of the villains. However, despite this recognition it was expected that Counsel for the UKHCDO would not be booed by those in attendance … oh no they wouldn’t.

 

Mr Andrew Kennedy KC started out by recognising the tragic events of the 1970s and 1980s. The suffering people lived with must remain at the forefront of the Inquiry work. Noticeably, he may have been the first to mention “culpability” albeit potential. The “innocent victims” who had no control over these events in their lives must be remembered and the UKHCDO will seek to respond accordingly to the Chairs final report. The UKHCDO has fully cooperated in providing access to all its documents, which have constituted a considerable exercise in disclosure. Additionally, over 6,000 documents were reviewed at the request of the Inquiry. The current Chair (and Vice-Chair of the Database sister organisation), Prof Chowdrey, was in attendance. She authored the statistical report as requested by the Inquiry. This was a huge exercise given the time period, the scope and the scale. In taking this task forward, the Inquiry was able to cut through red tape that might not have been possible otherwise. Mr Kennedy acknowledged the concerns expressed by some about their personal data being held on the database, but hoped that the statistical report as produced would highlight the value of such a powerful tool which is unprecedented across Europe. He invited people to review the material provided by the UKHCDO which describes the usefulness of the database as an important means of supporting people with bleeding disorders.

 

The fact that previous individuals associated with the UKHCDO have given evidence does not mean they were speaking on behalf of the organisation. Neither does the organisation see it as its role to speak for these persons, either to support or defend them. They spoke as individuals. The current group steering the organisation are not those who were in positions during the time periods under investigation. So, just like the DHSC, the UKHCDO would not be taking a position on what the Inquiry should find. This is seen as different from the DHSC position due to the nature of the organisation (i.e. not a statutory body). It is a professional body made up of practicing clinicians without a corporate identity.

 

Mr Kennedy recalled the possibility of “hindsight bias” as mentioned by the DHSC. There is not the organisational memory within the UKHCDO and this makes it even more difficult to explain what was the thinking and motivation of those in roles during past times. The Chair noted his own experiences of adjudicating on industrial injury cases where such considerations would provide an incomplete testimony. The final submissions of the UKHCDO did not comment on such otherwise key issues such as the Heathrow Airport hotel meeting, and this was felt to be appropriate. It was right to acknowledge that the meeting happened, but would leave it to the Inquiry to place whatever significance or meaning on the contents of the record of that meeting or other documents might hold, and not the current UKHCDO.

 

It was asserted that while some will see a lack of responsiveness or adequate action by the UKHCDO in firmer times, it was also the case said Mr Kennedy that the body was at the forefront in certain respects of progressive healthcare, including on matters such as peer review. It was noted that the UKHCDO has remained the only body where clinicians from across the UK take up membership, even after devolution. The policy and management of clinicians is the responsibility of the individual states and not a UK or organisational competency.

 

The assertion had been made that the UKHCDO was dominated by the biggest and most influential centres and operated as a closed-door body. However, Mr Kennedy noted the regular attendance at its meetings of Government officials and even the Haemophilia Society (HS). It might have been predictable that certain representatives would be more involved if their Centre was larger and they engaged more often together, compared to those with a more associate status. Certain submissions including a quote from Thompsons which asserted that the UKHCDO was a “club” dominated by a few people “at the top”, and a way for the Government to deflect responsibility, were questioned. In defence, he cited how doctors in other countries wanted what the UK had. This writer detects a degree of professional jealousy that may not necessarily be for the exclusive interest of their patients, given the freedom and benefits the UKHCDO provided its members.

 

The guidance issued by the UKHCDO was not mandatory, and some have criticised it for that. But the nature of the organisation could not assume such power. Mr Kennedy recognised that it was for the Chair to decide if the publications of the UKHCDO were sufficiently strong in tone or adequate in relation to, for example, AIDS or recombinant. If it required to be mandatory guidance, it ought to have come from a statutory body such as the Department of Health (DH, now DHSC). So, it looks like the buck is being passed to the Government for a lack of leadership. The option of the UKHCDO becoming somehow formalised was seen as unworkable, and would have greatly reduced its independence. This writer suggests the UKHCDO wanted the status and control, but not the accountability or ultimate responsibility for their actions or inactions; how convenient.

 

The statement continued to pick nits out of the words and phrases from various submissions by those representing the infected and affected when commenting on the UKHCDO. It appears that instead of setting out what the UKHCDO thinks the evidence leads to – that being their position not to take a position – instead the opportunity of making a closing statement is being used to take a red pen through others’ submissions.

 

Mr Kennedy recognised the changes in the healthcare systems across the UK in areas such as the automatic respect given by patients to doctors, and also the possibility of clinical freedom being curtailed by standards being passed down centrally. He also spoke about the difficult topic of research, or as he helpfully clarified it, “observational research”. He re-framed research as being more of a desk-based review of paperwork with patient data on it. Further, it was made clear that it was not the UKHCDO which was doing the research, but the individual clinicians and their employers, while yet recognising that the researchers were all the members of the organisation. It could also have been noted that they were all happy to co-author each others’ papers.

 

Moving to recommendations, Mr Kennedy recognised how it was not really appropriate for the UKHCDO to have a view on compensation, but he did support the proposal for “natural clearers” to be included. He reported that there was support for the status of Haemophilia Units being designated as “centres of excellence”. This recognises the need for “comprehensive care” arrangements, while acknowledging the organisational and financial challenges for individual healthcare providers to maintain that higher level of service. Mr Kennedy supported the recommendation from the unrepresented core participant, Elizabeth Buggins, about multi-disciplinary teamwork. Any update to the comprehensive care standards should involve all stakeholders, including patients.

 

The UKHCDO would strongly resist and argue against its legal form changing to be some kind of public ownership. Mr Kennedy cited how challenging it would be for them to independently argue for recombinant or carry out other positive advocacy on behalf of patients. It was recognised how the Scottish territorial health boards helpfully provided support to the UKHCDO. With respect to the National Haemophilia Database, it would be the recommendation to ensure the existence and security of funding to maintain the database. Its value is established as world-leading and an exemplar which has been replicated in other countries. He noted the demise of the database in Canada after their considerations of the contaminated blood issues there. The database would be expected to suffer from the vagaries of central Government funding as is seen for other electronic resources if it were taken in-house. This writer may be accused of cynicism, but it appears that the UKHCDO do not want to lose control of the “money-cow” resource and reputation enhancing step-ladder that is the (their) database.

 

It was accepted that the database needed to adapt and change for the sake of future needs. It is essential for the generation of good treatment guidance (… and that sure went well in the past, didn’t it?)

 

In conclusion, Mr Kennedy spoke to those who had given evidence, in particular the infected and affected, hoping that the Inquiry report will provide the answers people have campaigned for and deserve.