7 May 2025: Panel of Campaigners/Groups - A

Almost a full year since the publication of the Infected Blood Inquiry “final” report, we are back in London, back in Church House, back with our fellow victim-survivors, hoping against hope we are not back at square one. It would have been no small thing to make the decision to re-open the public hearings of the Inquiry. The unprecedented characteristics of the Contaminated Blood Scandal has taken on a new facet which subverts words like final, closure, ending, and healing. The response of Government to the outcome of the Inquiry has been as inadequate, as undermining, as traumatising, and as miserly as was the response of Governments throughout the periods investigated by the Inquiry. Nothing seems to have changed, apart from the nature of the gaslighting messages. “We did the best we could under the circumstances” replaced by “We’re doing the best we can by working at pace”. A great deal of faith is being placed in Sir Brian, Jenni, and the team. The faith in the Government has long gone. Here is their chance to remedy the course of so much unfinished business.

Sir Brian began with a contextual introduction. Despite the highly unusual circumstances for re-starting the hearings and the serious issues which prompted this development, the desire is to be constructive, while not minimising the significant problems to be addressed. Of particular note, Sir Brian recognised how so many people have passed, even in the year since the report was published. There was also a – probably necessary – reminder about respectfully letting the witnesses speak, however people might feel to react to what a witness might say.

Miss Richards gave an overview of the two days. With the largest panel ever seen at the Inquiry, consisting of campaigners and group representatives, she likened her role to one of a circus ringmaster. This brought the first gentle laugh from those assembled. Under such an emotionally heavy reason for meeting, hopefully it will not be the last humorous respite.

The panel members were sworn in, and they were each given an opportunity to briefly introduce themselves. Without linking witness contributions to named individuals, Miss Richards then led the panel through a series of topics.

A summary of the situation in Scotland was compared with what happened after the final report was published. The Montgomery so-called Expert Group was immediately identified as a fundamental flaw to the Government’s response. Nobody from the community was allowed to be involved. It was all done in secret. To make matters worse, the democratic process was destroyed by the calling of the General Election and by the summer recess. In the meantime, the officials were given free rein to work their penny-pinching processes.

The paucity of the community engagement approach was described, with a reflection on the impacts on the community. When there eventually was contact, it was not to listen and improve, it was to tick a box. The attitude was cold, inhuman, and bureaucratic and gave the appearance of the civil servants having learned nothing at all about their predecessors in Whitehall. Neither campaigners, groups, or their legal representatives who know the people and the situation, were allowed in, in all substantive ways. Peoples’ lives are “on hold” as they wait to be invited to access the processes. “They have made a bad situation terrible”, and it feels like a lottery with the civil servants having no awareness of the mental health impacts arising from how they are going about responding to compensation.

Another campaigner began by quoting a member of the community, describing what has happened over the past year as bringing “a new and different level of psychological pain”. People have been massively let down after the relief brought by the Inquiry report. The delays, the incredibly slow pace when there is progress, the obvious cost savings being made by the Government as people die before compensation happens is horrible to witness. People are crumbling, even some of the long-standing campaigners, due to the weight of new distress being caused by the Government’s self-serving response. A series of comments were briefly quoted, the wording of which brought a series of respectful applause rounds as the feelings of the majority were articulated by people who share common difficult experiences. The problems were wide-ranging, including the lack of real independence of the Infected Blood Compensation Authority (IBCA), it not being a true arms-length body, the discrimination towards children, the infected deceased not being respected or recognised, the family members when relationships broke up or became complicated, and so many more. “The damage caused deserves its own compensation scheme.”

The next witness spoke about those excluded from any financial support or interim compensation. This includes those excluded by cut-off dates, Hep B infected, self-clearers, those with completely missing records, and others. These groups have felt like they have been in limbo for years. The problem with IBCA not having any power to change the rules is made worse by continually deflecting questions to the Government who will not listen, bringing more compounded harms. There should be immediate registration and interim payments. There was a reference to the calls for these by the Scottish Infected Blood Forum (SIBF). Despite what is said by senior IBCA personnel, there are concerns about the newly recruited IBCA staff who will be expecting more evidence gathering without recognising the additional harms this unnecessary paper exercise will bring.

Miss Richards turned to the next witness with a series of questions about the process of developing and more recently operating the compensation scheme. People in the community with key skills have not been involved, which would have certainly speeded up the processes and made them more suitable to the circumstances. An analogy of a wartime disaster cover-up was cited, with circling sharks preparing to devour sailors in the open sea being seen as representing Time. People have lost all hope. They have abandoned the idea of ever getting compensation before they die. In the meantime, the belated meetings with Government are not open and engaging. The officials and Ministers are there, but they are not listening with a view to acting to make changes. When progressive suggestions are made, they are ignored. It is as if the specific objective is to do everything possible to draw this out for as long as possible. “Put the money where the mouth is, and get it done.”

A witness with a history involving the Treloars College boys reported how the group just don’t know where they stand when it comes to compensation, while waiting for the “invitation”. The research amounts of £10,000 or £15,000 were described as disgraceful. These amounts in no way represent the harms caused over years of unethical testing.

The next witness spoke from the perspective of the affected community. She has been excluded from meetings despite decades of being a well-known and effective campaigner. The experience is not isolated. The meetings themselves are too short, not engaging, and too late. “They see us as the enemy.” The meetings are treated as a tick-box exercise. The affected are being forgotten, “They just want us all to die”. The estates of the infected deceased are left hanging without any idea of when closure will happen, if it ever will. People cannot see any light at the end of the tunnel.

(At this point a break was called.)