Public Inquiry – Joint Position Paper

The Scottish Infected Blood Forum and Haemophilia Scotland, along with independent campaigners, have drafted and issued a Joint Position Paper on the Public Inquiry into contaminated blood and blood products.

It can be downloaded here.

 

The Executive Summary brings together the key points without supporting detail and we’ve listed these below:

“We support the establishment of an UK Public Inquiry and are proposing it has the following features:

1. The Inquiry be consulted on and established by the Cabinet Office or Ministry of Justice.
2. A statutory Inquiry under the 2005 Inquiries Act.
3. The Inquiry to be led by a Chair and Panel, rather than a Chair alone (page 17).
4. That there are Scottish Core Participants with Scottish legal representation.
5. The procedures of the Inquiry to be flexible and responsive to the needs of those infected including,
   1. Those that wish to are able to give oral evidence.
   2. Hearings are held in locations throughout the UK at accessible venues.
   3. Proceedings are streamed live online.
   4. The questions that affected people want to be asked can be put.
   5. The privacy of those affected is protected.
   6. Different topics should be investigated simultaneously, potentially under different members of the Panel, to allow the Inquiry to proceed quickly and make interim recommendations.
6. Terms of Reference that include,
   1. All infections and pathogens
   2. All use of plasma derived clotting factor products
   3. Accountability and responsibility
   4. Consent, communications, and risks
   5. Blood donor selection
   6. Blood product selection
   7. Impact on those affected
   8. Access to justice

 

The full report is 21 pages long and covers the background to both organisations and the extent of infections in Scotland, the history of campaigning in Scotland, the lessons from the Penrose Inquiry, what the UK wide Public Inquiry’s Terms of Reference should cover and the powers and procedures of the inquiry.

The report’s Table of Contents is hyperlinked to the relevant pages of the report, so clicking on any topic in the table of contents will automatically take to that part of the report.

Staff and Trustees of both SIBF and Haemophilia Scotland have spent a considerable amount of time in drafting, compiling, reviewing, editing and amending this joint paper; we believe it covers the issues involved comprehensively from a Scottish perspective within the UK context.

A full list of topics covered is detailed below:

Background

Haemophilia Scotland

Scottish Infected Blood Forum

Extent of the infections in Scotland

Hepatitis C

HIV

History of campaigning in Scotland

Lessons from the Penrose Inquiry

Access to the Inquiry

Insufficient analysis and recommendations

Terms of Reference

Infections

Pattern of Exposure of people with inherited bleeding disorders

Evolving knowledge of Hepatitis B

Evolving knowledge of Hepatitis C

Evolving knowledge of HIV/AIDS

Evolving knowledge of CJD

Full disclosure of pathogens

Responsibility and Accountability

Ultimate responsibility

Cross border issues

Consent, Communications, and Risk

Consent for testing and research

Communication of risk

Timeliness of communication

Patient Choice

Constancy of information

Communication to non-specialist treaters

Blood Donor Selection in the UK

Self-identification of high risk groups

Prison Blood

Illicit Drugs and Blood Donation

Donor deferral decision-making

Surrogate ALT testing

Routine anti-HCV testing

Targeted Look-Back

Blood Product Selection

Large pool manufacturing

Manufacturing standards

Licencing

Purchasing

Alternative treatments and treatment regimens

Risk benefit analysis

Impact

Access to justice

Justice delayed

Conspiracy to conceal

Powers and Procedures of an Inquiry

Statutory Panel

Liability

Core Participants

Legal Representation

Structure of the investigation

Selection of an Inquiry Chair and Panel

Chair alone or Chair with Panel

Selection of a Chair and Panel