On Monday afternoon, representatives from Haemophilia Scotland met with Sir Robert Francis, Interim Chair and of the Infected Blood Compensation Authority (IBCA), and Interim Chief Executive David Foley in Edinburgh to discuss the progress of the compensation scheme and to address the ongoing concerns of the community. Other IBCA staff, including Interim Director of Communications Rachel Forster, were also in attendance.
Sir Robert opened the meeting by outlining the actions taken since he and David Foley were appointed to set up the IBCA, as well as the challenges presented because of the General Election. He acknowledged that there had been lots of uncertainty and confusion within the community during that period, and the lack of communication from IBCA had contributed to this. However, Sir Robert hoped that recent improvements had addressed some of these issues and would continue to improve going forward.
Regarding staffing, Sir Robert reiterated that IBCA is an independent body, separate from the government. At present, staff are being seconded from the Cabinet Office on an interim basis until the organisation can recruit its own employees, once the appropriate policies and procedures are in place. This was done due to the urgent need for compensation and to prevent further delays in establishing IBCA.
IBCA is also in the process of recruiting Community Advisors, who will act as the “conscience” of the organisation and bring essential lived experience to inform its strategy and direction moving forward.
The meeting then opened to questions on a range of topics that we wanted to address. The key points from this discussion and responses are summarised below:
- Local Representation: While IBCA is headquartered in Newcastle, the IBCA board has agreed in principle to explore establishing more local representation in the devolved nations to ensure people have more regionally-focussed support.
- Future of Support Schemes: The Scottish Infected Blood Support Scheme (SIBSS) and other similar support schemes will continue operating after 1st April 2025 for existing beneficiaries. Later in 2025, at a period to be specified, IBCA will assume responsibility for providing ongoing support payments to individuals who choose to remain on this option.
- Discretionary Payments: Clarification was sought on the future of discretionary payments currently offered by support schemes. David Foley acknowledged the need for clear guidelines to be given but noted that no formal decisions have been made yet.
- Improved Communication: IBCA plans to make further improvements to communication by launching new social media channels before the end of October, followed shortly by their new website. Email newsletters will be published monthly, with additional updates and important notifications sent out as needed.
- Claims Calculator: The claims calculator is currently in development and is expected to be launched before the end of this year.
- Testing Phases for the Scheme: Sir Robert and David outlined that the initial testing phase, involving 20 invitations, is aimed at thoroughly assessing system stress points and identifying areas for improvement. A larger testing phase, with around 250 participants, is scheduled for early next year to further refine the process before the scheme is extended to all eligible infected individuals. The scheme will fully open to affected individuals and those opting for the supplementary route later next year, once the Government enacts the second set of regulations.
- Legal and Financial Support: Discussions have been held between the Cabinet Office and IBCA regarding legal and financial support for participants. Sir Robert stated that the Government has agreed to provide this support, following his recommendations, and IBCA is working on finalising the details of the package.
- Evidence and Application Process: Sir Robert emphasised that IBCA Claim Managers will prioritise only gathering sufficient evidence to support an individual’s claim, rather than requesting excess documentation. He reiterated that the ethos of IBCA staff will be to work in favour of the claimant and only submit evidence needed to support the information contained within the claim.
- Determining Date of Infection: In response to a question about determining the date of infection, Sir Robert stated that decisions would be based on the confirmed or presumed date of infection, using the balance of probabilities from available or missing evidence, to ensure claims are assessed fairly.
The meeting concluded with plans to schedule a follow-up meeting in January to provide an update on progress. Additionally, we discussed the possibility of organising a larger event in the new year, where IBCA representatives can engage with the Scottish infected and affected community and address their questions and concerns directly.
While Sir Robert and his team were able to offer some reassurance and clarify several areas of concern within their remit, Haemophilia Scotland will also be seeking engagement with the UK Paymaster General, Nick Thomas-Symonds. We intend to write to the Minister again and request a meeting at the earliest opportunity to discuss our urgent concerns on matters that need to be considered before the second set of regulations are prepared and laid down next year.