Final Report

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When I was appointed as Chair of this Inquiry in January 2009, I did not know how many years the Inquiry would take, nor did the loyal members of my team who have remained with the task. Some inquiries relate to a single event. In others, as in this Inquiry, there are multiple factors that evolve over time. This creates a complexity that can only be resolved by critical analysis to define the particular areas for study, followed by ingathering and evaluating evidence with a view to reaching conclusions on matters of fact and opinion. This type of Inquiry can lead to an investigation of immense scope and so it has proved.

Both the duration and the cost of Inquiries are often matters of public concern, but until the evidence is ingathered, it is impossible to know the full scope of the task. Terms of reference only intimate the direction of the investigation: it is the evidence which dictates the necessary journey.

The terms of reference required a wide-ranging investigation into Hepatitis C and HIV/AIDS. That investigation involved people with bleeding disorders and those who had received blood transfusions: two very different groups, and those who had received blood transfusions are members of an extremely diverse group. With a timeframe of 1974 to 1991, the amount of material was vast.

The terms of reference also involved a requirement to investigate four specific deaths: Reverend David Black, Mrs Eileen O'Hara, Mr Alexander Black Laing and Mr Victor Tamburrini. The deaths of the Reverend Black and Mrs O'Hara played an important role in the genesis of the Inquiry as their relatives pursued the right to an independent investigation which ultimately led to this Inquiry being set up. Much effort has been expended in the investigation of the four deaths and it is to be hoped that their relatives obtain some comfort from this work.

It soon became apparent that the amount and complexity of the factual material alone for this Inquiry represented a significant challenge. I took the decision to write a Preliminary Report, setting out the factual narrative, which was published in September 2010. The Preliminary Report also contained the proposed topics for the hearings. The oral hearings commenced in March 2011. The Preliminary Report stood us in good stead and saved us a great deal of time during the hearings.

The oral hearings took place over 89 days and examined the controversial topics. They concluded in March 2012. We had over 13,000 pages of transcript, in addition to 200 witness statements and 120,000 documents in our database. The task of writing the Final Report has been demanding. Some topics were particularly challenging. More evidence had to be taken for the Statistics topic. The numbers of people affected are clearly important and this is reflected in the efforts made to ensure they were as accurate as possible.

Once the Final Report was in draft form in December 2013 there was a requirement under the Inquiries Act 2005 to issue warning letters to anyone subject to significant or explicit criticism. This included not just criticisms made by the Inquiry but also those made of individuals in evidence, if repeated in the Report. Again the warning letter process constitutes unknown territory as the impact of the responses cannot be known until they are seen. As currently framed, the statutory requirement is far-reaching, with inevitable consequences for the time required to complete the Report.

The Final Report is long because of the amount of evidence and the need to understand the development of the diseases and their impact not just on people with bleeding disorders but also on anyone who had become infected with Hepatitis C or HIV through a blood transfusion.

Much of the comment made over the years on the topics discussed in the Final Report has reflected strongly-held beliefs. Some commentators believe that more could have been done to prevent infection in particular groups of patients. Careful consideration of the evidence has, however, revealed few respects in which matters could or should have been handled differently.

One area where it is concluded that more could have been done is in the delay in the introduction of screening for Hepatitis C. In relation to AIDS, it appeared to the Inquiry that, once the risk had emerged, all that could reasonably be done, was done. When actions in Scotland were subjected to international comparison, they held up well.

This was always going to be an Inquiry about what happened in the past as opposed to a commentary on current practice with recommendations for change. Indeed there is only one recommendation - the need to make further efforts to assist anyone who received a blood transfusion before September 1991 and who has not had a test for Hepatitis C. The Scottish Government must take action to address this.

The length of time which had passed since the events addressed by this Inquiry was unusually long. We were constantly aware of the need to understand the conditions prevailing at the time and not to judge events by today's standards. This was found to be true especially in relation to the doctor-patient relationship which was acknowledged to be paternalistic at the beginning of the period. There was a great deal of dissatisfaction on the part of patients about the information provided to them. This was found to be a combination of genuine lack of information as the understanding of the conditions developed, and the nature of the relationship in which doctors were not used to sharing all information available with patients as they do today.

Much of this Inquiry has been about the adverse consequences experienced by those who were infected by HIV/AIDS and or Hepatitis C. The impact on their lives and those of their loved ones has often been devastating, as set out in the Report. I would also comment on the often forgotten suffering of clinical staff, who were to discover that the treatments they thought were beneficial to patients actually caused them to become infected with life-threatening conditions. This is the stuff of nightmares, and they too have suffered, especially when accused of knowing or deliberate attempts to harm patients. One doctor eloquently described his experience of prescribing the new concentrate products which offered so much to patients with haemophilia only to discover the threat of AIDS as, 'waves of hope, followed by waves of despair'. Patients and doctors shared this experience.

The work of the Inquiry could not have been carried without the support and active participation of the administrative staff, lawyers and paralegals. I am grateful to the Medical Assessor to the Inquiry, Professor Oliver James, Emeritus Professor of Medicine, University of Newcastle, for his advice and guidance throughout the process.

Laura Dunlop, QC, worked with diligence and dedication. Maria McCann and her team provided the administrative support without which the process would have been impossible. The individual members of both teams are listed in Appendix 2. I wish to record my unqualified thanks and admiration for their work, sometimes carried out in trying circumstances.

Finally, I would like to thank all those who gave evidence to the Inquiry. The courage of the patients and relatives is manifest within the relevant chapters in the Final Report. I also pay tribute to those patients who gave evidence and who have sadly died during the course of the Inquiry. I offer my sincere condolences to their loved ones.

Lord Penrose signature
The Right Honourable Lord Penrose

1. Introduction >