IBCA sessions on hearing and responding to feedback and concerns
In July 2025, the Infected Blood Inquiry recommended that IBCA and Cabinet Office create a mechanism for community concerns to be formally raised and responded to.
We already respond to concerns and feedback raised with us, gather these into themes, and publish them on our website. This is so that you can see the most common themes we hear, and what we're doing about them. You can read the latest key themes covering January to March 2026.
We held community driven development sessions in March to discuss how we can enhance this process, and to gather information to make sure it works for the infected blood community.
What happened
We held 5 group sessions between Friday 20 and Friday 27 March 2026 with community members to discuss hearing and responding to feedback and concerns. Written feedback was also received from a stakeholder representative group.
These community driven development (CDD) discussions focused on how IBCA can design a process to receive and respond to feedback and concerns in a way that is clear, consistent and in-line with the Inquiry’s recommendations.
Format
Each session lasted around 60 minutes and was held virtually. Every discussion began with an acknowledgement that some of the content may be upsetting or remind participants of frustrations of dealing with public bodies in the past. Participants were reminded that they could take a break or leave at any time.
The summary notes were shared with all attendees for review and comment before publication. The insights gathered will shape the design of the IBCA process for receiving and responding to feedback and concerns.
The discussion focused on two key topic areas - what kind of concerns and feedback should be captured through the new process; and how IBCA should respond.
You can see in green the slides that were shared in advance of the sessions below.
The key points from the discussion are summarised below:
Topic 1: What kind of concerns and feedback should be captured and considered through this feedback process
Clarity on remit and processes
Some participants raised concern that the terms “feedback” and “concern” are being used interchangeably. They told us that there needs to be greater clarity about the definitions of feedback, what is a concern, and what is a complaint - with separate, clearly defined processes for each.
There was also concern that there may be confusion about the respective roles of IBCA and the Cabinet Office (CO), with many participants unsure where to direct their concerns.
There was a call for a coordinated system of responding to feedback and concerns between IBCA and CO, rather than providing a ‘not us’ response, and for defined lines of accountability and tracking of responses.
Some participants also raised that there should be full transparency on the concerns being raised, where they are passed to and the final response, and this should be publicly available for accountability.
There was also a clear request for the process to include indicative response timeframes, so that people know what to expect and to act as a performance indicator for reporting purposes. It was asked whether there could be prioritisation of responses based on time sensitivity, for example somebody reaching the end of their life.
The development of the IBCA website was raised several times, with suggestions including clearer navigation, additional information that is more specific and less generic, frequently asked questions, and forms to support accessibility and explain how to provide feedback and concerns.
Making it easy to provide feedback or raise a concern
There was a strong, consistent, view expressed by participants in all groups that it should be made as easy as possible to provide feedback and raise a concern. Accessibility was a major concern, particularly for people who do not use websites, older and more vulnerable community members. A range of channels for capturing feedback and concerns were suggested including website, email, drop-in events, telephone, written correspondence and leaflets.
The importance of providing support for older people and people who may find it difficult to give feedback or raise concerns, such as allowing family members to join telephone calls, was also raised.
There was a request that a route be established for stakeholder groups to raise systemic issues.
The possibility of having staff dedicated to receiving and responding to feedback and concerns was suggested, rather than claim managers, to not impact on claim progression resources and to provide consistency of response.
Topic 2: How IBCA should respond to feedback
Acknowledgement, updates and follow-up
Participants expressed a clear expectation that all feedback, regardless of format or content, should be acknowledged and acted on.
There was a consistent call for all feedback and concerns to be acknowledged, so that even if a full response takes time people know their submission has been received and is being considered. The acknowledgement should let the person know what to expect by way of response, and when by.
Participants also raised how at this early stage in the process, further details should be requested by IBCA or the CO if needed, and guidance or support offered. Where feedback or concern was passed to the CO, this should be explained.
Where there are delays in providing a response, it was requested that the person should be notified of this, the reasons for the delay, and the new anticipated timeframe.
It was also suggested that there should be a follow-up to ask whether the person was happy with the response they received.
Content
The emotional weight of engaging with IBCA was flagged, describing the need to send feedback or raise a concern as the reopening of traumatic experiences. We need to be mindful of this when responding to feedback and concerns.
Across all groups there was a strong emphasis to be mindful of tone, use plain language, and ensure there’s humanity and compassion in how feedback is received and responded to. Participants warned against stock responses and called for IBCA to treat each submission with care, given the vulnerability of the community.
It was important to participants that clinical expertise should inform responses where appropriate (e.g. infection specific or mental health expertise), and that the response is received from a person of appropriate seniority.
If the feedback or concern is raised and responded to over the telephone, participants expressed the importance of this being followed-up and confirmed in writing with the person or organisation involved. The response should also be in writing.
Consistency across responses should also be a key consideration, with FOI responses held as an example of inconsistency.
Reporting
There was some frustration that there had been limited visibility to date on how previous feedback had led to change. Transparency emerged as a critical issue, both in relation to IBCA's own processes and in relation to the Cabinet Office. Members felt that providing feedback to the Cabinet Office was particularly challenging, with attendees commenting that they had no clear visibility of where it went or what happened to it.
There was a call for regular reports to be presented to the IBCA Board and Community Panel.
Suggested report content included common themes (protecting individual anonymity), to see which groups/types of claims were impacted, actions taken and whether issues were being resolved over time. This was seen as both a transparency measure and a way of showing that individual feedback had contributed to a broader picture.
Participants were supportive of publishing a regular summary of feedback and concerns, the improvements being made in response, and response times. However the frequency of reporting was debated. Quarterly was seen by some as too infrequent; monthly was considered but recognised this may potentially be unmanageable. A middle ground of every six weeks, or interim updates between quarterly reports, was also suggested.
Conclusion
Participants were clear that the Inquiry’s intent is for IBCA to use their feedback to improve the claim service. They concluded by saying that a poor process will increase their distress instead of easing it, and how this is managed will be essential in supporting members of the community.