The Penrose Inquiry recommendation

3 Executive Summary

• The Penrose Inquiry, published on March 25, 2015, recommended "that the Scottish Government takes all reasonable steps to offer an HCV test to everyone in Scotland who had a blood transfusion before September 1991 and who has not been tested for HCV".
• A Short-Life Working Group ( SLWG), established by the Scottish Government, was asked to consider what specific actions should be taken in the context of the Inquiry recommendation. The SLWG's response to each of its terms of reference is as follows:
• To assess the extent of the problem - i.e. estimated numbers of living HCV infected individuals who acquired their infection through blood transfusion in the UK pre-1991 and who remain undiagnosed and the estimated number of living HCV infected individuals who acquired their infection through the receipt of plasma products pre-1987 and who remain undiagnosed.
  • The Penrose Inquiry Report provided an estimate of the number of people who had acquired HCV infection through blood transfusion pre-September 1991 - "around 2500" - but it did not provide an estimate of the number of HCV infected people who were still alive and undiagnosed. The SLWG undertook further work to generate such estimates; to avoid the potential for underestimating the scale of the problem, a precautionary approach was taken when factoring in assumptions used in the analytical work.
    
  • It is estimated that:
    (i) approximately 100,000 people who received a blood transfusion pre-1991 in Scotland are still alive;
    (ii) approximately 100 of these 100,000 (0.1%) are HCV infected ^[1] ;
    (iii) around 30 of the 100 remain undiagnosed.
  • It is unknown what proportion of the 100,000 people, who received a transfusion pre-1991 and are still alive, have been offered an HCV test and what proportion of these have been tested.
  • Between 0 and 71 people with a mild blood factor disorder who received occasional plasma product treatment, may still be alive and not have been offered an HCV test.

• To monitor the impact of the media coverage, following the publication of the Penrose Report and its recommendation, on HCV testing uptake and HCV positive yield in the relevant population.
  • Both the initiation and the publication of the Penrose Inquiry generated considerable high profile media attention, not least because statements on the Inquiry and its recommendation were made by the Prime Minister and Scotland's First Minister in the Westminster and Holyrood parliaments respectively. Additionally, a number of infected individuals and family members gave interviews about their predicament; in the context of what is a stigmatised condition, their courage is acknowledged and greatly appreciated.
  • During the three months following the Inquiry publication, it is estimated that at least 1,000 Hepatitis C tests were performed on people seeking a test because of concerns about a previous blood transfusion.

• To review past and current interventions to promote the diagnosis of HCV-infected individuals who acquired their infection through blood transfusion pre-1991
  • Numerous national and local initiatives - specifically designed to raise awareness among both professionals and the public about the risks associated with Hepatitis C acquisition and the benefits of getting tested - have been undertaken over the last 25 years. All or nearly all have made reference to blood transfusion risk pre-September 1991 but none have solely targeted this population.
  • Further, Scotland's Hepatitis C Action Plan - one of the world's most comprehensive government sponsored programmes to develop services for those infected with, and at risk of acquiring, Hepatitis C made the infection and associated disease a special public health issue in Scotland; accordingly, many awareness raising spin-offs have stemmed from the enormous amount of investment and activity connected with the Plan since 2008.

• To consider if any further national/ centralised action should be taken to identify such individuals in the context of action already taken and the likelihood of appreciable benefits.
  • The SLWG fully acknowledges the importance of ensuring that anyone still alive and infected with Hepatitis C as a consequence of blood transfusion pre-September 1991 should be given the best possible chance of taking advantage of the stunning new advances in treatments which are safe, easy to administer and highly effective. Taking account of the Inquiry's recommendation that any steps to offer an HCV test to such individuals should be "reasonable", the SLWG also recognised the need to ensure that any new intervention(s) are optimally cost-effective and proportionate in the context of the scale of the problem.

The SLWG unanimously agreed on the following:

• Delivering a targeted awareness campaign focussed solely on individuals who received a blood transfusion pre- September 1991

This awareness campaign should aim to reach all targeted individuals through the use of traditional (e.g. leaflets and posters) and more modern (e.g. social media) approaches. Such approaches recognise that an appreciable minority of people do not access information from more traditional sources. The details surrounding the design and implementation of the campaign would be worked on following any such Scottish Government approval. The SLWG agreed that any such campaign should be evaluated to determine its impact.

• The identification and written offer of an HCV test to a group of (up to 71) plasma product factor recipients who are as yet not known to have been HCV tested.

• A Chief Medical Officer letter should be sent to all clinicians in Scotland to remind them of certain risk factors (including pre-September 1991 blood transfusion and injecting drug use) and clinical (including otherwise unexplained Alanine Aminotransferase liver enzyme level) indicators for HCV infection and making them aware of the recent advances in therapy and thus the benefits of HCV testing.