On Saturday the 26th August, Haemophilia Scotland and the Scottish Infected Blood Forum held a joint meeting to discuss a collective response to the announcement that there will be a UK Public Inquiry into the contaminated blood and blood products disaster.
The meeting was well attended by affected people, including independent campaigners, from across Scotland. Members of the legal team who represented the patient interest during the Penrose Inquiry also took part.
The clear view of the meeting was that,
- The UK Public Inquiry should be a Statutory Inquiry but framed to be as flexible and responsive to affected peoples’ concerns as possible. In particular,
- The Inquiry should be under a panel rather than a lone Chair.
- The investigation should be segmented rather than linear. There should be milestones so that as each aspect is dealt with a preliminary recommendation can be made so that the appropriate bodies can respond immediately. Panel members could be selected with a view to them leading particular aspects of the investigation. This could stop the Inquiry taking longer than necessary.
- Many more affected people should be able to give oral evidence than were permitted to during the Penrose Inquiry.
- Patients and patient representative need to be fully involved at all stages from establishing the Inquiry, through how it is conducted and reports, to the implementation of its recommendations.
- Be accessible to people all over the UK including holding public hearings in all four nations and streaming the proceedings online.
- There are particular Scottish elements to the disaster which must be represented in the UK Inquiry. Scotland has had its own NHS, blood transfusion service, and legal system throughout the disasters. Specifically, there must be Scottish Core Participants and separate legal representation.
- All Scottish campaign organisations and individuals should work together as much as possible to maintain a clear Scottish position in relation to the Inquiry and the disaster. We should engage with the process of establishing the Inquiry as early as possible to be able to influence the terms of reference.
- There are important lessons to learn from the Scottish experience of the Penrose Inquiry including,
- that the Terms of Reference need to be very specific and clearly direct the Inquiry Chair and Panel to examine the key areas of concern for the community, and make recommendations. Terms of reference which require general investigation are vulnerable to be interpreted so as not to require the specifics to be examined.
- The Chair and Panel should be young enough, and foreseeably well enough, to complete the work while in good health.
- Once the Chair and Panel are appointed they will have a lot of power. It is important not to rush to appoint an inappropriate Chair or Panel Member but to appoint people who are acceptable to those affected.
- The Inquiry should be focused on bringing out the whole truth and the terms of reference should include,
- Who is accountable?
- Were there actions which could lead to criminal/civil prosecutions or further disciplinary action?
- The Inquiry must be able to investigate the actions of Ministers. Was action delayed and if so why?
- Investigate whether systems and procedures were appropriate and not just whether they were followed.
- All viruses and prions including Hepatitis B, Hepatitis C, HIV, and CJD.
- Have all appropriate lessons been learnt and if so what specifically has changed? Should include a full risk assessment.
- The development and use of pooled plasma derived clotting factor products.
- Protecting the safety of the blood supply, including surrogate testing and donor exclusion.
- Consent for research, testing, and using stored samples.
- Communication of risk and infected status. Were patients fully informed and included in decision making.
- Whether evidence was removed by the destruction or alteration of medical records or other relevant files.
- The impact of the disaster.
- Financial losses and on-going financial support needs, including insurance costs.
- Health of those infected (from fatigue and brain fog to death), their families, and their sexual partners.
- On-going no financial support needs of all those affected.
- Who is accountable?
- It is vital not to lose focus on working to improve the Scottish Infected Blood Support Scheme (SIBSS).
Several people who spoke at the meeting made it clear that if there was an unsuitable Chair, Panel, or Terms of Reference then they wouldn’t be prepared to engage with the process.
Haemophilia Scotland and the Scottish Infected Blood Forum will be working together with members and independent campaigners to develop the views of the meeting into a comprehensive Scottish position.
A venue has been set for the meeting between Bishop James Jones and affected people on the 12th September (11:30 for a 12:20 start). It will be at BMA House, Tavistock Square, London, WC1H 9JP.