On Wednesday we met with Sir Robert Francis, and several people working on the development of the IBCA including the interim CEO David Foley and Sir Johnathan Montgomery who chairs the expert group. The meeting was part of their engagement on the proposed infected blood compensation scheme. It was attended by HCT alongside several other individuals and organisations representing people affected by infected blood.
Although we can’t share full details of the meeting, we want to provide a summary of the discussion and our contribution to it. Rachel Halford, CEO, attended the meeting along with Leila Reid, the Director with responsibility for our work on infected blood. The meeting was held online and lasted just over two hours. Each participating organisation was given five minutes to summarise their key points around the compensation proposal, with particular reference to five key areas:
- Future of the Current Support Schemes
- Severity Bands
- Care and Financial Loss Awards
- Evidence Requirements
- Equalities Impact
Given the length and detail of the proposals, this feedback was limited to key points. Rachel began by highlighting the short timescale available to participants to prepare for the meeting and our desire to engage in more detail with our community before submitting a more detailed response, which can be done in writing before the 30 June. More detail will be circulated soon on this engagement.
Rachel talked about the feedback we’d had from people recently and the concerns and anxiety prompted by the proposed ending of the support schemes. She also stressed the importance of compensation being meaningful, and not simply a lump-sum equal to the amount a person would already expect to receive under the existing support schemes, and the need to review the current IBSS criteria for people currently excluded, including those given hepatitis C after September 1991.
Rachel also highlighted concerns around assumptions in how the proposed hepatitis C compensation had been calculated, in particular relating to the introduction of additional bands, removal of the Special Category Mechanism, and the assumption that after 2016 the widespread introduction of direct-acting antivirals reduced financial losses. She also stressed the importance of considering vCJD and other viruses some people were potentially exposed to.
Regarding evidence requirements, Rachel described the challenges many of the people we support have faced trying to obtain medical records, and how important it is that any future scheme deals fairly with people whose records have simply been destroyed. Rachel also raised questions about the structure and accessibility of the proposed Supplementary route, and highlighted the importance of including people given hepatitis B in this process.
Sir Robert highlighted the opportunity for any and all interested parties to submit feedback on the current proposals – which can be viewed online. Feedback can be sent via email to ibiresponse@cabinetoffice.gov.uk by 30 June; we’d encourage everyone who would like to feed back on the current proposals to do so, and ensure the voice of everyone infected and affected is clearly heard.