Apologies for the longer than usual post but a lot has been going on in the run up to last week’s statement from the Prime Minister that the UK Contaminated Blood Inquiry was to be a Statutory Inquiry overseen by the Cabinet Office.
Firstly, thank you to the many members of Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF) who have come to recent campaign meetings and spoken to us about what they’d like to see from the UK Public Inquiry.
Using your comment, and our experience of the Penrose Inquiry, we have developed a joint position statement which we believe reflects the views of the majority of affected people in Scotland. We sent a copy to the UK Government on 11th October.
The Executive Summary summarises our position,
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.
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,
a) Those that wish to are able to give oral evidence.
b) Hearings are held in locations throughout the UK at accessible venues.
c) Proceedings are streamed live online.
d) The questions that affected people want to be asked can be put.
e) The privacy of those affected is protected.
f) 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,
i) All infections and pathogens.
ii) All use of plasma derived clotting factor products.
iii) Accountability and responsibility.
iv) Consent, communications, and risks.
v) Blood donor selection.
vi) Blood product selection.
vii) Impact on those affected.
viii) Access to justice.
We also provided a copy to the Scottish Government so that they had a clear understanding of the views of people in Scotland when they we discussing the Inquiry with the UK Government.
Shona Robison MSP, Cabinet Secretary for Health and Sport then met with Haemophilia Scotland and the SIBF. She told us there had been a ministerial level conference call with Jackie Doyle-Price MP, which had discussed these issues. We also talked about next steps including a proposed letter from the Cabinet Secretary to the Prime Minister.
Her letter to the Prime Minister, sent shortly after the meeting, raised the following points. It,
- Supported a Statutory Inquiry.
- Supported having a Panel rather than having a single Chair.
- Called for the Panel to have a say on the Terms of Reference having listened to those affected. She also asked for clarity over the process for setting the Terms of Reference and stressed the importance of building on the work of the Penrose Inquiry rather than duplicating it.
- Called for the Scottish Government, Haemophilia Scotland, and the Scottish Infected Blood Forum should be Core Participants of the Inquiry with legal representation.
- Urged that the Inquiry should be established as quickly as possible.
There has also been progress on legal issues. At the recent joint Haemophilia Scotland / Scottish Infected Blood Forum members’ meeting we were pleased to announced an even closer working relationship with our legal team of Thompsons Solicitors, Simon Di Rollo QC, and Jamie Dawson.
Thompsons Solicitors have launched a new website so that affected people in Scotland can sign up for regular updates on the contaminated blood and blood products campaigning work of Haemophilia Scotland, SIBF, and Thompsons Solicitors.
You can register online at contaminatedbloodregister.co.uk or over the phone by calling 0800 081 0072.
At the meeting there was also an extremely useful discussion about the experience of people using the new Scottish Infected Blood Support Scheme. We will be working on these issues together and using them to prepare for the first periodic review of the scheme.
We are also preparing for the start of the Clinical Review to be chaired by Prof. David Goldberg. The group has been established by the Scottish Government as part of the implementation of the Financial Review Group recommendations. The review will look at how to change the criteria from moving from the chronic to advanced levels of financial support from liver damage to whole health impact, how to assess whether a death is related to the virus for assessing entitlement to widow’s pension payments; and looking at the wider impact of chronic hepatitis C infection.
The review is being conducted in four streams,
- Describing characteristics of those at the chronic hepatitis C infection stage (previous stage 1).
- Examining latest scientific literature, in particular on chronic hepatitis C.
- Direct evidence from a random sample of Scottish people with chronic hepatitis C and widow(ers).
- Evidence on impact on health and wellbeing of those with chronic hepatitis C from a clinical and medical perspective.
The first meeting of the clinical review is scheduled for the end of November this year.