The Penrose Inquiry was a extremely frustrating and disappointing experience for those affected by the contaminated blood disaster in Scotland. Although it was critical of the paternalist attitudes prevalent during the disaster, it failed to make specific recommendation to learn lessons from the disaster. The Mazurke cartoon (above) sums up how many of those involved felt about the Penrose findings.
The Penrose Inquiry was as the result of the first ever defeat of the Scottish Government at Judicial Review. In order to comply with this ruling and to fulfil an SNP manifesto commitment the then Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon MSP announced an Inquiry would be held on 23 April 2008 in the Scottish Parliament. Lord Penrose was appointed to conduct the Inquiry on 12 January 2009. You can read more about the history of the campaign in Scotland on our history of the contaminated blood campaign in the Scottish Parliament pages.
The Terms of Reference for the Inquiry were relatively broad but did not include an examination of the suitability of the current arrangement for financial support or an examination of the vCJD element of the contaminated blood disaster. The Inquiry was specifically into Hepatitis C/HIV acquired infection from NHS treatment in Scotland with blood and blood products after 1 January 1974. Haemophilia Scotland is disappointed that the Inquiry didn’t examine the issues around missing documents and gaps in medical records. Although the impact of the infections were looked at there was no examination of the appropriateness of the financial support arrangements. It is a weakness of the Inquiries Act that the Inquiry could not look at the issue of legal liability.
The Inquiry was conducted in two phases.
Phase 1 was a review of all available documentation. It was used to produce a Preliminary Report on 8 September 2010. This report detailed what was already know and established which areas of the disaster would be examined in Phase 2.
Phase 2 gathered evidence and tested it in Oral Hearings. These hearings took place over a total of 89 days between March 2011 and March 2012. There was also an additional procedural hearing on the topic of Statistics took place on 29 October 2012. The transcripts from all the hearings are available on the Penrose Inquiry website. Only a very limited selection of people with bleeding disorders who contacted the Inquiry were selected to give evidence. These evidence sessions were not in public to protect the identity of the witnesses.
Haemophilia Scotland was a Core Participant of the Penrose Inquiry which recognised our interest and give us access to the patient interest legal team. Several members of Haemophilia Scotland worked with the legal team on the final submission to the Inquiry.
Lord Penrose published his final report on the 25th March 2015. By the time it reported the Penrose Inquiry had taken over six year and costed an estimated £12 million. In that time, people with bleeding disorders in Scotland who were infected have continued to die and their bereaved families still lack the support they need. Those who survive often suffer from seriously bad health as a result of these chronic conditions and the impact that has on their families.
The Penrose Report
The Publication of the Penrose Report
The Haemophilia Scotland Response to the Penrose Report – The Evidence
The Haemophilia Scotland Response to the Penrose Report – The Recommendations
Telling my Contaminated Blood Story