The Contaminated Blood Campaign in the Scottish Parliament
Campaigning in the media
The Ross Report (2003)
SNP Manifesto (2007)
Opinion of Lord MacKay of Drumadoon (2008)
The Archer Report (2009)
The Ross Report: Ten Years On (2013)
Factor 9 – Dogstar (2014)
SIBF Scoping Exercise (2015)
The Penrose Inquiry (2009- 2015)
Infected Blood Financial Review Group (2015)
The Penrose Short-Life Working Group (2016)
The Scottish Infected Blood Support Scheme (2017)
Scottish Joint Position Statement (2017)
Scottish Joint Terms of Reference Submission (2018)
Infected Blood Inquiry (2018)
Clinical Review Group Report (2018)
The contaminated blood and blood products campaign has long been known by those involved as simply The Campaign. In this section of our website you can find out about the Scottish dimension of this disaster. These pages are far from exhaustive and simply aim to give an overview.
When it was first introduced plasma derived clotting factor treatment for inherited bleeding disorders, such as haemophilia and von Willebrand, had no protection from blood borne pathogens. As a result everyone treated in Scotland, 478 people including many children, were exposed to hepatitis viruses, most notably hepatitis C. Of these at least 60 were also infected with HIV. When the Penrose Inquiry reported in March 2015 there were just 251 infected people still alive and just 20 of those with HIV had survived. That means there are 478 bleeding disorders families in Scotland who have either lost a loved one to this disaster or are living with the infections or the aftermath. Haemophilia Scotland is campaigning for truth and justice for all these families.
2,500 people, without a bleeding disorder, who received blood transfusions in this period were also infected. When the Penrose Inquiry reported in March 2015 there were only 471 survivors of blood transfusion infection in Scotland. Our friends at the Scottish Infected Blood Forum campaign for people infected by blood transfusion or blood products and we work closely with them to give all those affected in Scotland a strong voice.
The role of independent campaigners in Scotland is also very important. We are proud to be working with a group of campaigners in Scotland who all bring different skills, experiences, and perspectives to the campaign.
The Campaign in Scotland
The establishment of the Scottish Parliament in 1999 provided both a focal point for campaigning in Scotland and much better access to those in power. The issue was on the agenda of the Scottish Parliament right from the beginning as two Scottish campaigners were arrested for throwing paint at the new building to symbolise the unresolved contaminated blood issue. Scottish campaigners were quick to take advantage and have consistently worked with Members of the Scottish Parliament (MSPs) to raise issues. This political work has been supported by a sustained effort to cover the issue in the Scottish media. We are grateful to all the journalist and producers who have helped highlight the infections.
Am early victory was the establishment of Expert Group on Financial and Other Support under Lord Ross in 2003. The Report recommended a wide range of steps to improve the diagnosis, access to justice, and financial support for those affected. The Scottish Executive (the contemporary name for the Scottish Government) response eventually led to the establishment of the Skipton Fund ex-gratia support scheme across the UK.
Following years of frustration with successive Government’s failure to establish a statutory Inquiry The Rt Hon. Lord Morris of Manchester established an Independent Public Inquiry under The Rt Hon The Lord Archer of Sandwell QC which ran from February 2007 to February 2009. Scottish campaigners supplied documentary evidence and travelled to London to give oral evidence to the Inquiry.
Another breakthrough was securing the support of a major Scottish law firm, Thompsons Solicitors Scotland. Frank McGuire took on the campaign on a pro-bono basis and lead a successful judicial review of the decision of the Scottish Government not to hold a Public Inquiry into the blood product and blood product Hepatitis C infections . He successfully argued that Article 2 of the European Convention on Human Rights meant that for the right to life to be protected all deaths caused by the actions of the state must be investigate. The judicial review judgment, from Lord MacKay, came in Feb 2008 and coincided with the election of the first SNP Scottish Government in May 2007 on a manifesto which, thanks for the efforts of campaigners in Scotland, included a commitment to,
…hold a public inquiry to find out why people were infected with hepatitis C through NHS treatment.
These two developments combined to lead to the establishment of a statutory Public Inquiry under Lord Penrose. The Penrose Inquiry Terms of Reference were relatively narrow. Although HIV was added the Inquiry was not broadened to include Hepatitis B, vCJD, or accusations of cover-up. Nevertheless, the Inquiry took seven years from being announced to produce a Final Report in March 2015. The Penrose Report provided a detailed narrative of the contaminated blood and blood products disaster in Scotland but provided very little analysis on how lessons could be learnt. This is exemplified by the fact that the Penrose Report contained just one recommendation,
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.
Read more about the The Penrose Inquiry and Report.
The start of the Penrose Inquiry coincided with the decision to close the Protein Fractionation Centre (PFC) at Liberton, Edinburgh. This was where many of the infective products were produced. While the Penrose Inquiry was going on the influential Scottish theatre company, Dogstar, premiered a powerful play which highlighted the disaster. Factor 9 helped raise awareness with whole new audiences. Also, in preparation for the Penrose Inquiry Report the Scottish Infected Blood Forum conducted a thorough scoping exercise to provide additional information on the impact of the infections on people in Scotland.
Following the Penrose Report the First Minister and the Cabinet Secretary for Health, Sport, and Wellbeing made formal apologies on the floor of the House of Parliament and accepted moral responsibility. The Scottish Government then set up a Financial Review Group to make recommendations on improving the financial support available in Scotland and a Penrose Short Life Working Group to make practical recommendations for implementing the Penrose recommendation. Patient representatives served on both groups.
The Financial Review group recommended the establishment of a Scottish support scheme and higher levels of support, including for widow(er)s. The Penrose Short Life Working Group concluded that there were around 30 people infected with Hepatitis C through blood transfusion who were undiagnosed, and that Between 0 and 71 people with a mild blood factor disorder who received occasional plasma product treatment, may still be alive and had not been offered an HCV test. It recommended a awareness campaign targeted at primary healthcare settings to try and identify those infected through blood transfusion, and an exercise linking data sets to try and identify the blood product cases. The Scottish Government delivered both approaches.
Read more about the Infected Blood Financial Review Group.
Read more about the The Penrose Inquiry Recommendation Report of a Scottish Government Commissioned Short-Life Working Group.
To minimise delay, some of the increased financial support payments were made through the old, UK-wide, ex-gratia support scheme The Skipton Fund. The Scottish Infected Blood Support Scheme was then established to provide a one-stop-shop for all financial support payments to those infected in Scotland (who also first applied for ex-gratia support from Scotland).
Read more about the Scottish Infected Blood Support Scheme (SIBSS).
An outstanding recommendation from the Infected Blood Financial Review Group was that a Clinical Review Group should be established to ensure the criteria for the SIBSS were in line with the latest clinical opinion and recognised the whole health impact of the infections. The Clinical Review Group has recently reported and the Scottish Government will be responding to it’s recommendations soon.
Haemophilia Scotland, the Scottish Infected Blood Forum, and independent campaigners in Scotland have been working increasingly closely together. When the UK Government announced a Public Inquiry we worked together to issue a joint position statement in relation to the Inquiry and then jointly responded to the consultation on Terms of Reference. The record of campaigning in Scotland and our joint working have been recognised by the Infected Blood Inquiry who have given both charities organisational core participant status and accepted Thompsons Solicitors Scotland as our legal representatives. Over 200 affected individuals in Scotland have also registered for Thompsons to represent them at the Inquiry. You can follow the work of Haemophilia Scotland on the Inquiry on our dedicated webpage.
There are a lot of other charities and campaign groups working on this issue around the country. This alphabetical list is not exhaustive and only includes those with a website we are aware of.
- Birchgrove Group
- Factor 8
- Haemophilia Wales (Infected Blood Inquiry Core Participant)
- Tainted Blood
- The Haemophilia Society (Infected Blood Inquiry Core Participant)
- The Hepatitis C Trust
- The Forgotten Few
- The Scottish Infected Blood Forum (Infected Blood Inquiry Core Participant)
Other notable campaign groups which currently have no website we are aware of include,
- Contaminated Blood Campaign
- Haemophilia Action UK
- The Manor House Group
- Haemophilia Northern Ireland (Infected Blood Inquiry Core Participant)
Many key campaigns have never affiliated to a group or have been involved with several groups.
There also some excellent Facebook Groups for those affected. However, to protect people from stigma and provide a safe space for discussion, many of these are closed and/or private so, for fairness, none are listed here.
Including Thompsons Solicitors Scotland, we are aware of seven law firms working with patients on the Infected Blood Inquiry. In alphabetical order they are,