IBCA community feedback themes: January - March 2026

Preface

This page summarises concerns and issues raised with IBCA by the infected and affected community and stakeholders between January and March 2026.

The themes shared on this page have been compiled using your feedback and concerns from:

• social media
• drop in events
• visits to IBCA
• emailing IBCA or talking to us on the phone
• feedback surveys and research
• Community Driven Development (CDD) sessions
• User Consultants and the Community Advisory Panel (CAP)
• formal letters and correspondence.

To note, the themes included here are not intended to represent the full range of feedback that have been shared with us over time. They represent feedback themes we've received over the last three months through the channels listed above.

Themes we've heard and how we're responding

Pace of claims being processed and the 'private beta' phase

Feedback from the community:

• There is continued frustration regarding the pace of the scheme, particularly the initial testing phase known as 'private beta'.
• One example question was "Why are you contacting small numbers of people to make claims?".
• Some people have criticised IBCA's 'technical' explanations for this and asked for more clarity, including on social media.

In response:

• We understand your frustrations and aim to reply to all questions where possible.
• We have used our social media posts to explain more about our approach and the number of people claiming, including a video featuring John Kelly, Data Director.
• We are contacting smaller numbers of people to make claims while we 'learn as we go' and build the service before opening it up more widely.

Concerns over prioritisation and the order in which claims are processed

Feedback from the community:

• There is increasing tension around the 'queue' for payments, with some families acting on behalf of people who have died feeling they have been 'deprioritised'.
• Questions and concerns were raised about why some claims, particularly for those aged over-75, appeared to be selected randomly or processed out of sequence while older beneficiaries continue to wait.
• People have told us they'd like more information to quickly identify individuals who meet the 'end of life' criteria so that those in most urgent need are dealt with first.

In response:

• We will continue to update regularly on how claims are being brought in.
• We have published information to explain how we prioritise claims. Following the Infected Blood Inquiry's recommendations, we prioritise claims across all groups based on the following criteria:
  • People who are sadly nearing the end of their life (within 12 months).
  • People who are aged 75 or over.
  • Living infected people who have advanced liver disease.
  • Claims where the infection was not recognised through any previous interim compensation.
  • For living infected claims: People who have advanced liver disease.
  • For affected claims: Children whose parents were both infected and died.

Concerns raised with Cabinet office

Feedback from the community:

• We have seen growing and significant criticism regarding the award for unethical research. Campaigners and community members strongly criticised the amount, describing it as "wholly inadequate for the decades of harm caused".
• We have heard that some families of people who died young feel unfairly disadvantaged by the rules for calculating lost earnings compared to those who are still alive. Some people making claims have reported difficulties (financial and paperwork) in getting estate claims processed, including issues with the Infected Blood Interim Estates Payment Scheme (IBIEPS).
• Some people raised concerns about processes and decisions made by the Technical Expert Group (TEG).
• People have raised issues with the definition of Hepatitis B in the rules, believing this is causing problems for the claims of people solely infected with Hepatitis B.
• Some have suggested that the supplementary route for claims should formally include compensation for the loss of childhood and the emotional trauma of watching multiple family members die.

Cabinet Office's responses and related actions include:

• The Cabinet Office has published the Government response to the consultation on changes to the Infected Blood Compensation Scheme. The response details several areas of action that will be taken to improve compensation payments for the infected blood community.
• In response to concerns raised about the community being excluded from Technical Expert Group roundtables (TEG), The Cabinet Office said: all 36 community group representatives were invited to attend virtual roundtables held by the TEG between December and March to inform the TEG's final advice to the Government. A background paper was published in advance for each roundtable and all members of the infected blood community had the opportunity to submit written responses for the TEG to consider. The Chair of the TEG also held a conclusion webinar. All members of the infected blood community were invited to join to hear what the TEG had considered from the roundtables. To ensure transparency, the TEG has published: minutes of all their meetings; summaries of discussion at each roundtable; a summary of written responses to each roundtable; as well as its final report of advice to government.
• The Minister for the Cabinet Office has confirmed that in line with Inquiry Recommendation 2e, the Government is launching a new, direct route for people to raise concerns about how the compensation scheme works. You can now email feedbackandconcerns@ibca.org.uk and your email will be directed to either the Cabinet Office or IBCA for response.
• Both the Cabinet Office and IBCA will publish quarterly summaries showing the feedback received and the actions being taken as a result, with the first of these updates expected in early July (IBCA already produce a quarterly report).

Probate and estate complexities

Feedback from the community:

• Stakeholders highlighted financial and paperwork problems that make it difficult to claim for an estate.
• These barriers include high probate (or confirmation) costs, complicated rules for claiming when a will is not present, and some families are understandably finding it difficult to pay for probate or confirmation without knowing the claim will be eligible first.

In response:

• We are working with UK probate authorities to make sure we can support people making a claim through the process. When bringing in claims, we test and learn from each one, and are reviewing the best ways to support people so they can understand if they are eligible for compensation before they have to pay any probate costs.
• We are also building more guidance into our processes and plan to proactively contact those already registered for deceased claims, to make sure everyone understands that they need probate in place before they can claim.
• People have also told us they are concerned about inheritance tax, so we are working with HMRC to see how we can better support people to understand their tax responsibilities.

Evidence requirements and medical records

Feedback from the community:

• People making a claim have reported that it's difficult to find missing, lost, or destroyed medical records to support their applications.
• People were distressed about the different ways the scheme's regulations treat Hepatitis B and Hepatitis C. Specifically, people raised concerns that a short-term (acute) Hepatitis C infection is eligible for compensation, while a short-term Hepatitis B infection is not. This has led to questions about the exact definition of 'chronic' Hepatitis B and how the specific medical testing works.
• Affected people raised concerns about the difficulty of gathering relationship documentation (such as old school records) to prove familial ties for children's claims.

In response:

• We shared official policy guidance on chronic Hepatitis B on 19 February, and agreed to take specific community concerns regarding testing methodology to our clinical advisors.
• We are setting up a group with doctors and Haemophilia Centres to find out how we can support them and improve evidence gathering.
• We use a standard legal test of balance of probabilities when deciding claims, and we can legally require organisations to give us information.
• We made it clear that many different types of evidence can be used to support claims for children, including care home records, child benefit information, medical reports, and pictures with family.
• We are working on a specific set of rules for proving family relationships and connections to make the process easier to understand.

Transparency and public board meetings

Feedback from the community:

• People told us they valued the first live-streamed public Board meeting in February, with viewers noting it provided a helpful "level of comfort" and transparency to see discussions first-hand.
• However, some people felt this was "too little, too late" and felt frustrated that they were not more involved in the early design of the compensation scheme.
• Some stakeholders expressed concern that IBCA's first Community feedback themes report in January only showed some of the community's concerns, not all of them.

In response:

• We hosted our first live-streamed public board meeting, reaching over 1,000 viewers. We know there's more we can do to make this accessible to everyone, so for future board meetings we will make sure papers are published further in advance, with short explanations on what's going to be discussed.
• We updated our regular compensation statistics publications to include detailed breakdowns of registrations by specific claim groups, responding directly to community requests for data transparency.
• The community themes document we published in January covered feedback from communications channels, such as through social media and emails. We've enhanced this to include feedback received across the organisation and will continue to drive transparency around feedback to IBCA as part of our response to the Inquiry's recommendation about setting up a mechanism to respond to people's concerns.

Fraud protection and no win no fee solicitors

Feedback from the community:

• The community shared concerns about vulnerable individuals being approached by third parties for claims, including solicitors offering "no win, no fee" arrangements for legal services.

In response:

• We have shared more information about the free legal support on offer when people start their claims, and will continue to do this so no-one feels obliged to pay for support when it is available for free.
• Fraud, both in terms of those trying to make bogus claims, and people trying to de-fraud those who have claimed, is something we take very seriously. We have a dedicated fraud team who are taking action to prevent this, and use our communications to remind people not to share personal information online. If you are approached by someone about your claim who you do not know you can contact fraud@ibca.org.uk.
• Our Trauma Informed Fraud Approach to fraud protection has been developed through co-design with community representatives. This model aims to ensure that protective measures do not hinder legitimate people making a claim.
• We are embedding fraud prevention awareness across all IBCA teams.

Questions about the Infected Blood Inquiry closure

Feedback from the community:

• Following the announcement that the Infected Blood Inquiry would officially conclude its work on 31 March 2026, there was confusion among some community members.
• Some mistook this announcement for the closure of the ongoing compensation scheme, asking if unregistered individuals would miss out on payments.

In response:

• We proactively responded to community concerns to clarify the difference between the closure of the Infected Blood Inquiry and the continuation of the IBCA compensation scheme, reassuring people that our work will not be done until we've paid every eligible person who has claimed.

Face-to-face engagement and event accessibility

Feedback from the community:

• So far we have hosted community drop-in events in Glasgow, Birmingham and Manchester, with more planned over the coming months. Feedback on the events so far has been positive, with people welcoming the opportunity to meet and discuss the claim process face to face.
• We have seen strong demand for increased accessibility for future events, including requests for varied session timings, options during school holidays, and virtual/online sessions for overseas people making a claim or those too unwell to travel.

In response:

• People told us they wanted to know more about the events in advance, so we have published a 'what to expect' walkthrough video.
• We are exploring virtual drop-in sessions and school holiday options to improve accessibility.

Service improvement and user research

Feedback from the community:

• IBCA continues to do regular user research with small, targeted groups of infected blood community members to understand their needs and improve the service.
• Through research we did on the website, we found that while many people use it to understand the claims process, they need the site to be clearer and more up-to-date, especially about timescales.
• We tested a new save and resume feature for entering claim information. Those we spoke to said it would help relieve the pressure to provide their information in one go, particularly for those managing multiple claims.
• We also researched how to improve clarity in letters and emails used to explain people's claim eligibility. Through this, we received feedback that we needed to carefully consider language and tone and provide clear explanations as to the reasons behind eligibility decisions.
• Feedback from the survey we send to people after they've completed their claim (from 30 respondents between January and March) showed that 86% reported a positive experience, highlighting a smooth process and helpful claim managers. However, some survey respondents were unhappy with updates, the time it took to gather supporting documents, and resulting claim delays.
• We also did research with IBCA staff to improve how we process claims and address challenges. This included topics such as guidance, communication, identity verification, calculating compensation and handling changes in circumstances.

In response:

• All user research and feedback is shared with internal teams to improve the service.