Community feedback themes: July - September 2026

Preface

This report summarises concerns and issues raised with IBCA by members of the infected blood community and stakeholders between July and September 2026.

During this period, we gathered insights from a wide range of interactions across the community. This includes hundreds of emails and calls to our support and correspondence teams, numerous meetings with charity and campaign groups, and hundreds of comments across our social media channels.

Why we produce this report

We produce this report so you can clearly see the most common themes we are hearing, and what actions we are taking to address them.

Community views are central to how we design and deliver the compensation service. These themes have been compiled using feedback and concerns shared through:

• emailing IBCA or talking to us on the phone
• social media
• drop-in events
• engagement with stakeholders
• visits to IBCA
• feedback surveys and research
• User Consultants
• formal letters and correspondence
• feedback and concerns mailbox

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.

How to raise a formal concern with IBCA

In July 2025, the Infected Blood Inquiry recommended that IBCA and the Cabinet Office create a formal way for community concerns to be raised and answered (Recommendation 2e).

To act on this recommendation, we have set up a direct route for anyone to raise feedback and concerns about how the compensation scheme works and is delivered. You can email IBCA at feedbackandconcerns@ibca.org.uk.

We review and respond to the issues raised, gather them into these quarterly reports, and publish them on our website. Concerns or issues raised will be considered by IBCA and/or the Cabinet Office.

Both organisations will publish quarterly summaries of feedback received on the compensation scheme design and delivery, and any action being taken as a result.

If further action is not being taken, we will explain the reason for that decision. We raise matters with the Cabinet Office where it falls outside of IBCA’s remit to act or respond (for example the design of the scheme).

Themes we’ve heard and how we’re responding

1. Pace, delivery and roadmap transparency

Feedback from the community:

• Continued frustration regarding the speed of claim processing.
• Community members feel that delays remain unexplained and express anxiety that elderly or vulnerable individuals may not live to see their claims settled.
• Continuing requests for a published roadmap outlining clear milestones, sequencing, and target timescales for various claim types (including supplementary routes and estates).
• Concerns were raised that describing living infected individuals as having been "paid" is misleading, as many have only received core awards while elements such as SCM, Care, and Exceptional Loss remain pending.

In response:

• We deeply acknowledge the profound emotional weight, anxiety, and distress that delays cause for individuals and families across the community. Starting at a measured scale was not intended to slow down progress, but to ensure that we built a safe, reliable, and respectful process that avoided painful errors, unnecessary delays, or the need to revisit past steps. Before expanding to higher volumes, we needed to ensure complete confidence in identity verification, evidence handling, clear policy guidance, and well supported claim managers, all shaped directly by community feedback.
• For 2026/27, our focus is on reaching decisions for 5,000 claims, beginning with living and deceased infected individuals who registered their intent to claim by July 2026, as well as affected claims, while securely transitioning the IBSS schemes and reviews under the fourth regulations.
• To provide greater clarity and peace of mind, this year serves as our foundational year, with our ambition next year to progress through a large proportion of remaining claims while acknowledging that we continue to see month on month growth.
• We hold the utmost empathy for individuals who are older, in frail health, or facing end of life circumstances. We prioritise claims for individuals aged 75 and over or those at the end of life as per the recommendations made by Sir Brian Langstaff.
• We are dedicated to preparing our claim managers through trauma informed training and sensitive guidance so that every interaction feels supportive, understanding, and responsive to your needs.
• We hear and validate the concerns raised regarding language around claims being "paid." We are reviewing and updating our communications to accurately reflect partial versus full settlements, ensuring total transparency.

2. Implementation of fourth regulations and complex claims

Feedback from the community:

• Queries regarding how the Fourth Regulations will be actioned and how claims will be prioritised for reassessments.
• Requests for updated compensation calculators, visual case studies, and clear payment timescales.
• Concerns from campaign groups that Exceptional Financial Loss and Special Category Mechanism (SCM) routes must be implemented without further delay and not deferred while other scheme elements move forward

In response:

• The Fourth Regulations became law in July 2026. They brought in several changes, including extra payments for some people and higher awards for certain family members. From 1 October 2026, the regulations were built into the service.
• For infected individuals, the regulations now include an autonomy award uplift for those infected before age 18, alongside a new severity category (Level 2B) for individuals with chronic Hepatitis B or C who underwent interferon treatment. The calculation methods for past care and additional financial loss have also been amended. For affected family members, the regulations introduce specific uplifts to injury awards.
• We are still working out the exact process and timelines for reworking claims. This work includes reviewing claims to see what information we already have, identifying any gaps and working with the NHS to manage new evidence requests, such as interferon treatments.
• We can’t currently confirm how long the rework will take. Once we've reviewed all existing claims, we'll have a better understanding of how many people are impacted. This will allow us to give you clearer timelines and next steps for your claim. We'll update you across our usual channels once we have more information.
• However, because supplementary routes including unethical research awards and the Special Category Mechanism (SCM) are not currently included in the calculator, and it has yet to be determined whether they will be added, these complex calculations are not available.
• Queries about the Fourth Regulations relate directly to government legislation, so we have passed these on to the Cabinet Office to review and respond to. This includes feedback on areas such as the compensation for deceased infected people, compensation for bereaved parents whose children died aged 18 or over, and the cut-off date used to determine eligibility of an estate of a deceased affected person.

3. Prioritisation, transparency and estate claims

Feedback from the community:

• Ongoing confusion regarding how prioritisation rules operate in practice.
• Concerns that affected claims and claims brought on behalf of deceased infected individuals are being deprioritised.
• Calls for parallel processing so that whole family claims can be handled simultaneously to reduce administrative burden.
• Community members seeing others "brought into the service" without clear rationale caused concern over potential inconsistent implementation.

In response:

• We follow the recommendations of the Infected Blood Inquiry. Since June 2026 and following feedback, we have shifted to a whole person approach. If you have more than one personal claim, for example, an infected claim and an affected claim, we process these together from the start, rather than coming back for your other claims later. While processing multiple claims at the same time means we are adjusting our usual prioritisation sequence, this is done specifically to support a whole person approach and ensure all of an individual's claims are handled together. New explanatory content is currently in development and will be shared following Board review.
• Following the recommendations set out by the Infected Blood Inquiry, we bring people into the service when we are ready to handle their type of claim.
• We know it can be worrying to see other people brought into the service without a clear reason why. Every claim is unique, and some take longer to work through than others because of their specific evidence needs.

4. Identity verification, evidence requirements and missing records

Feedback from the community:

• High anxiety over missing medical documents with fears that claims will be unfairly rejected. We received questions on "how IBCA handles claims where there is missing evidence" and how "Balance of Probabilities decisions based on limited or missing evidence" are reached.
• Digital exclusion concerns regarding online government identity verification (IDV) tools, particularly for those with limited use of technology.

In response:

• Missing medical records will not automatically stop your claim. We understand how frustrating and painful it can be to navigate historical medical paperwork, and you will not have to handle this process alone.
• Your claim manager will work alongside you to explore alternative ways to verify your claim. If original records cannot be located, we will actively seek out supporting evidence to help move your claim forward.
• We are working directly with NHS clinicians to launch a streamlined evidence form. This focuses strictly on the essential details needed to process your claim, sparing you from unnecessary document requests.
• To make sure compensation reaches you safely and without delay, we are required to verify your identity. Using GOV.UK One Login offers a quick, secure way to complete this step directly from your phone.
• We know that online verification can sometimes feel daunting or difficult. If you run into any issues or prefer not to use a smartphone, your claim manager will guide you through alternative options and support you.
• For those who can use One Login this is the fastest and most straightforward way to provide your identity so we also recommend this first. For those who cannot for whatever reason our team will assist you through the offline process so while it may take longer it will be supported.

5. Case management consistency and retraumatisation

Feedback from the community:

• Apprehension that frequent changes to assigned claim managers force individuals to repeatedly share sensitive personal details, increasing emotional toll.
• Report receiving inconsistent communication from claim managers, including prolonged periods with no updates at all.

In response:

• We know that many people have already had to share painful experiences many times before. We want to reduce this burden as much as we can by taking these direct steps:
  • Different claims may require specialists with specific expertise. When more than one claim manager is assigned to your family or claim types, they work behind the scenes to share notes and coordinate on your behalf.
  • Where a claim manager is on leave or temporarily unavailable, another claim manager may pick up the case to avoid delays.
  • Where a claim has already reached an outcome but is being reviewed, for example following a change in regulations or a request for a formal review, it may return to a different claim manager than the one who handled it originally. The person claiming can request for the same claim manager to handle their case, however, this might slow a claim down.
  • In rare cases, a claim may be reassigned at the individual’s request, for example if they'd prefer a different point of contact.

6. Probate delays, legal advice and financial clarity

Feedback from the community:

• Severe delays in receiving documentation from national Probate Services or confirmation from the Scottish Courts and Tribunals Service, coupled with high legal costs (£5,000–£8,000) and complex intestacy rules.
• Reports of unaccredited "no win, no fee" solicitors charging high fees (up to £21,000) and unregulated individuals attempting to exploit those making a claim.
• Need for official guidance on Inheritance Tax (IHT) exemptions for compensation awards.

In response:

• As probate processing times depend on individual circumstances, we actively work with probate offices across the UK to help track applications and minimise delays wherever possible. While timelines vary for each estate, your claim manager will guide you through the required steps and support you in gathering the documentation needed to move your claim forward without unnecessary delay.
• We can arrange legal support when a claim begins, through six independent legal firms who offer impartial advice at no cost to you. If you want to use a different firm, we can discuss this with you.
• IBCA advises everyone to remain cautious of unsolicited approaches online or via social media from unregulated advisers or individuals offering paid assistance. If you have concerns please contact our general fraud query email: fraud@ibca.org.uk.
• Compensation is exempt from Income Tax and Capital Gains Tax, and relieved from Inheritance Tax. This applies whether it is paid to the person directly or to their estate.
• If a person dies before receiving compensation, their estate can still claim the payment, and it stays free of Inheritance Tax. If a beneficiary later inherits this money and then dies, the exemption does not carry forward. Their estate may then be subject to Inheritance Tax in the usual way.
• For more detailed advice on inheritance tax, you can contact the HMRC Inheritance Tax Helpline on 0300 123 1072.

7. Statistics, data reporting and community consultation

Feedback from the community:

• Requests for granular geographic, severity, or full payment breakdowns.
• Requests for data on the amount of people who have taken the full award.
• Request for breakdown regarding condition severity and number of people with those conditions who have been paid.
• Questions on which community groups were consulted prior to altering statistical publication schedules.

In response:

• We are deeply committed to safeguarding your privacy at every step of the process. While we want to share as much detail as possible, publishing granular data, such as breaking down payment statistics into very small, specific groups, creates a real risk of inadvertently identifying individuals who have been paid or are currently going through a claim.
• To protect community members from public exposure or unwanted attention, we carefully balance data transparency with strict privacy controls, ensuring your personal journey with IBCA remains fully confidential.
• We are actively upgrading our forecasting and data modelling tools this year to give us a clearer, more accurate picture of claim volumes, allowing us to plan resources effectively and reduce processing delays.
• Regarding the move to monthly stats reporting, we understand that this change and the reasoning behind it has raised some concerns.
  • We discussed this proposed change with eight community groups in July, and also spoke informally with the Chair and Co-Chair of the Community Advisory Panel. The groups we spoke to supported the move, particularly as it would reduce the need to suppress figures. No group objected. We keep individual group feedback confidential so everyone feels able to speak openly with us, though we know this does not represent the views of the whole community.
• Fortnightly figures often fluctuated, making it harder to see how claims are progressing over time. Moving to monthly publication will help us show a clearer picture, and give us more time to consider how we present information and what else we could include in future.

8. Service improvement and user research

Feedback from the community:

• IBCA continues to carry out regular user research with small groups of infected blood community members to understand their needs and improve the service.
• Website testing found users would value weekly news and updates on the homepage, and identified further accessibility, search, video and image improvements needed.
• Testing of the complaints section found people wanted more clarity on the review process, on the meaning of "unreasonable delays," on IBCA's status as an arm's length body of the Cabinet Office, and on the difference between claim managers and complaints managers. This section scored well for empathy and tone.
• Users preparing for the Infected Blood Support Schemes transfer wanted to be kept informed even when there is nothing new to report, wanted reassurance that their payments would stay the same, and wanted dedicated, accessible and knowledgeable support, particularly if they have not yet started an affected or deceased infected claim.
• Users with deceased infected claims reported varied experiences and challenges of verifying their identity using digital technology. Through the research, users described very different comfort levels with technology, showing the need to avoid assumptions and tailor support to the individual.
• Testing of draft letters for ineligible claims found that people understood the decision and next steps, but wanted more detail on how decisions are made, the role of clinical advisors, and what's needed for their declaration.
• A survey of 127 people across the three Private Beta groups found:
  • people with living infected never compensated claims are worried about how long claims are taking and about providing requested information
  • people with deceased infected claims want clearer expectations, and report struggles with hospital records, complex legacies, data sharing, and mixed claim manager experiences, especially when in poor health
  • People with affected claims report unclear communication, high administrative burden, repetitive identity checks, and want more transparency.

In response:

• All user research and feedback is shared with our teams to improve the service.
• For example, the feedback we have received on users preparing for the Infected Blood Support Schemes has resulted in a section on our website that keeps the infected blood community informed, even when there is nothing new to report.
• We are reviewing what changes can be made to improve how we share news and updates. We are also looking into how we can improve accessibility, search, videos and images.
• Payments will stay the same when Infected Blood Support Schemes transfer to IBCA. We will keep you informed. We are working on how to give you accessible support during this transfer, especially if you have not yet started an affected or deceased infected claim.