Community feedback themes: (April - June 2026)

Preface

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

During this period, we gathered insights from a wide volume 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, feedback from over 200 attendees across our London and Liverpool drop-in events, post-claim survey responses, 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
• Complaints mailbox

To note, the themes included here represent what IBCA has 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. If relevant, we will also pass your concerns to the Cabinet Office (for example if it concerns the design of the compensation scheme, rather than the delivery of it).

Themes we’ve heard and how we’re responding

1. Speed of claims being processed and 'private beta' phases

Feedback from the community:

• There is strong frustration about the speed of processing claims, with many feeling the process is "deliberately slow”.
• People say they are tired of hearing the terms "private beta" and "starting small," and want to know dates and milestones for when they can claim.
• Families of deceased infected people feel deprioritised and have expressed anger that starting their claims seems to be taking longer, even when their paperwork and probate may already be in place.
• Infected people who received relatively small core awards, and intend to make a supplementary claim, are worried that the supplementary route will be delayed until all core awards have been made.

In response:

• IBCA Chief Executive Officer David Foley has said that we aim to bring in all infected claims that are currently registered - both for those living and on behalf of those who have died - by the end of March 2027. We also intend to continue bringing in more affected claims.
  • This was included in his evidence given at the Public Accounts Committee (PAC) on 4 June, and also included in the community update issued on the same date.
  • PAC is an independent, cross-party parliamentary group that scrutinises how public money is spent.
  • The committee is looking into how government compensation schemes are set-up and managed, and what a well-functioning scheme should look like to ensure they are effective, timely, proportionate for those making a claim, and fair.
  • David gave evidence, and talked about the importance of using the lessons IBCA has learned and the structures it has built to pay compensation to all those who are eligible as soon as possible.
  • Watch or listen to the meeting.
• We are listening to the feedback about speed of claims, and continue to consider how we can increase claims coming in as soon as possible as part of our current business planning for this year. It has informed discussions of the IBCA Board on business planning for the coming year, which we expect will be discussed as part of the 7 July Board meeting.
• Concerns regarding the timing of the supplementary route will be considered by IBCA’s Board, as we await confirmation of the fourth regulations.

2. Transparency and keeping you informed

Feedback from the community:

• Community members feel they are left in an uncertain period of waiting after registering, with no individual updates on the status of their claim.
• We have been asked to shift our progress reports away from just focusing on financial totals. Instead, you want a clearer narrative on what is happening behind the scenes, what has improved, and meaningful, forward-looking milestones.
• We are hearing from a variety of voices across individuals, community groups, and charities. They have strongly stressed that we need to clearly show how community feedback is actually changing our decisions, rather than just listening without acting.
• People do not understand how the issues they raise are being fixed or reviewed by IBCA’s Board.
• There are worries that the legal support IBCA offers might have hidden clauses that stop people from legally challenging the scheme.

In response:

• We will use these community theme reports in future Board meetings to make sure your issues continue to be heard and to show how your feedback shapes our decisions.
• To ensure all feedback received is considered, IBCA’s Service Delivery leads will receive regular reports to understand community concerns and consider how we best act on them.
• We continue to meet regularly with community representative groups to discuss your concerns.
• We are working on future updates that are specific to the types of claims you intend to make, so that they feel relevant to you.
• Contracts with solicitors are in place so that anyone claiming can have access to free and independent legal advice when their claim begins. Please note that this free legal support is not available at the point of registration, but your Claim Manager will be able to arrange it for you once your actual claim process starts. There is no clause that stops someone claiming from taking future legal action. We are looking into what details we can share about these contracts without breaching any commercially sensitive information, as we want to be as transparent as possible. It’s important to emphasise that a legal firm will be acting for you, and not on behalf of IBCA; they offer advice independently of us.

3. Difficulty obtaining medical evidence

Feedback from the community:

• People are worried that their claims will be delayed because claim managers are asking for medical records from the 1980s or 1990s that may be lost or destroyed.
• The community asked for clearer guidance (e.g. a support manual or list of evidence that could be used), and a simpler form for doctors to fill out.
• People feel that the burden of finding old records should not fall on them, and that personal stories should be accepted as evidence.

In response:

• If your medical records are missing, it does not mean you cannot claim. Your Claim Manager will work with you to find other supporting information wherever possible. However, we do ultimately need some form of medical evidence to process a claim, and we acknowledge that it is unfortunately not always possible to obtain this.
• We are working directly with NHS doctors to create a faster, simpler evidence form. This will help us get the right information without asking for documents that are not needed.
• We have set up a specialist team at IBCA that works alongside claim managers requesting medical information, making it easier for healthcare providers to respond to our requests for medical information.
• We will share clearer guidance to explain what kind of evidence is usually needed as we increase the number of claims we bring in.
• IBCA will consider all forms of evidence, but does need official supporting documentation to support personal testimony. Your claim manager will work with you to find relevant information wherever possible if you do not have this.

4. Probate (confirmation in Scotland) and claims for deceased estates

Feedback from the community:

• Getting probate or confirmation (the legal right to deal with someone's estate) remains an obstacle for some. The high costs and feeling of confusing rules are causing concern within the community.
• People want clearer instructions on the deceased infected claims process and asked if we could check probate or confirmation status earlier on in the claim journey.
• Some people raised concerns about the cut-off date for getting probate costs refunded when applying for interim compensation with support schemes (not with IBCA).

In response:

• We are currently producing further guidance to provide clear, simple instructions on the steps needed for deceased infected claims, which we intend to publish in the coming weeks. This guidance will explain the role of probate/confirmation, while recognising that we continue to review the best ways to support people who do not yet have probate or confirmation in place.
• If you are applying for probate in England and Wales, you should email the HMCTS Probate Service at probateinfectedbloodscheme@justice.gov.uk with your probate case reference number, the full name of the deceased, and their date of death. This informs the Probate Service that your application is connected to an Infected Blood compensation claim. Please note this does not register your claim with IBCA; you must still separately register your intent to claim on our website.
• If you need to apply for probate in Northern Ireland, you can find guidance at www.nidirect.gov.uk/services/apply-probate.
• If you need to apply for a grant of confirmation (the equivalent to probate) in Scotland, you can find guidance on the Scottish Courts and Tribunals Service website at www.scotcourts.gov.uk.
• To explain why we need probate for deceased infected claims: it is a mandatory legal requirement under the Infected Blood Compensation Scheme Regulations 2025, even if you wouldn't normally need probate for the deceased person's estate. We require this legal document to confirm that you are legally entitled to act as the personal representative of the estate, and to ensure you have the authority to distribute any compensation received according to their will or the laws of intestacy.
• We know that applying for probate can be expensive, so if your claim on behalf of a deceased infected person’s estate is eligible for compensation, you can be reimbursed up to £1,500 for legal costs associated with getting a grant of probate, letters of administration, or confirmation in Scotland.
• We are exploring the use of case studies to give examples of the type of evidence we ask for.
• We are forwarding all formal complaints and concerns regarding the structure, scope, or fairness of the compensation scheme directly to the responsible Cabinet Office team for their consideration.
• The administration and eligibility rules for interim estate payments, including the October 2024 cut-off date for probate reimbursement, are handled by the Cabinet Office and existing support schemes, rather than IBCA. We have formally logged and passed your concerns regarding this cut-off date to the Cabinet Office.

5. How claims are prioritised

Feedback from the community:

• Many are worried that claims brought on behalf of deceased infected people are being overtaken by other types of claims.
• Some members of the community would prefer that claims brought on behalf of deceased infected people are prioritised based on the date the person died (earliest date first).
• Some groups suggested we should fast-track support scheme registered widowed partners and estates, as they may have their medical evidence and probate/confirmation ready. However, some have expressed opposing views, noting that it does not follow the existing prioritisation framework and would favour some of those who have already received interim compensation.
• Concerns have been raised regarding the current prioritisation policy in light of recent Government and EHRC guidance on interpreting the Equalities Act under provisions of service and exercising of public functions, specifically including sections 11.4A and 11.5A.
• Concerns have been raised that prioritising estates with no interim payments inadvertently disadvantages older affected individuals (such as parents, ex-spouses, or siblings) who are not estate beneficiaries themselves, but who are linked to estates that did receive an interim payment. These older individuals are near the end of their lives but did not personally receive that interim payment, and feel they are being deprioritised.

In response:

• We follow the Infected Blood Inquiry's recommendations for prioritising claims.
• We process different types of claims in parallel, (i.e. claims from different groups are all being processed now) but the speed and volume at which we bring in and complete them will vary depending on the complexity of the work and how confident we are in increasing the number of claims our service can handle as we build it. This helps us work as efficiently as possible, bringing in claims as soon as we can.
• On the suggestion to fast-track those who are widowed partners and estates registered with a scheme, other community groups have told us they are worried that fast-tracking these claims would be unfair to people who have not yet received any interim payments. This suggestion would also be difficult for IBCA to operationalise as we follow the prioritisation order recommended by Sir Brian Langstaff and the inquiry. It is also worth noting that, often claims that may look simple actually need more support or detail to be provided. This suggestion will be considered by the Board as part of business planning work to be included at the 7 July public Board meeting.
• To reassure older affected individuals: where an affected claim is prioritised on the basis of health or age, the claim of the infected person to which they relate (the foundational claim) will also be started in order to progress their affected claim. This ensures that priority affected individuals will not be deprioritised, even if they are linked to an estate that has already received an interim payment.
• Wherever a claim relating to a deceased infected person may sit within the prioritisation, we hope some reassurance can be taken from David Foley’s statement that IBCA aims to bring in all infected claims that are currently registered with IBCA - both for those living and on behalf of those who have died - by the end of March 2027.

6. Accessible systems and reaching minority communities

Feedback from the community:

• The claim process and identity checks have been described as frustrating and stressful for some, including older people and those who do not use computers. For example, some people have found the Government Gateway identity process to be problematic if they do not have digital access. Others have found the ID checks difficult because they do not own a passport or struggle to use video calls, which has sometimes led to forms being filled out incorrectly and needing to be redone.
• There are concerns that some communities might miss out because of language barriers or lack of internet access.
• Some people acting with a Power of Attorney for vulnerable family members have said they have trouble getting their identity verified.
• Concerns were raised regarding a specific case where a claim stalled because the claimant lacked computer literacy and struggled with the Government Gateway identity process. It was suggested we look into wider government verification routes for people who cannot use the internet, such as through local councils or the Department for Work and Pensions (DWP).

In response:

• We encourage using GOV.UK One Login because our scheme currently requires a 'High' level of confidence for identity verification to protect against fraud. Using the GOV.UK ID Check app with a biometric passport is the only way to achieve this 'High' confidence automatically. While completing this can take around 10-30 minutes, it allows us to proceed with your claim within 24 hours.
• Where someone cannot use OneLogin or does not have valid photo identification, our team will arrange a supported identity check. This alternative route takes significantly longer because our team must manually complete authoritative checks with local councils, banks, or other government departments to reach the required standard of protection.
• If a video call is required, this can be joined by a supporting family member or friend if helpful.
• Where an individual holds a lasting power of attorney (LPA) for a person claiming, it is important that we check this is valid. We will require a copy of the LPA.
• If a valid LPA is held and the person claiming still has capacity, we are required to seek permission from the person who is claiming so that they give us permission to speak to their designated attorney on their behalf.
• On reaching people who may not be online, we have partnered with local councils, like Wrexham Council, to help spread the word to harder-to-reach residents about how to register your intent to claim compensation. We are also exploring working with other communities and providing translated information.
• We want to ensure our service meets the needs of its users and offer a range of adjustments where they are requested. This includes alternative formats (such as large print or braille), hearing loops or other accessibility needs, and information in other languages.

7. Condition-specific concerns and medical assessments

Feedback from the community:

• The Hepatitis B community is worried that because most cases are acute (short-term), many people might not be able to claim. They also want clearer rules on what counts as a chronic (long-term) infection.
• The community has raised concerns that the scheme does not properly recognise Thalassemia as a distinct condition.
• There are worries about whether clinical advisors will have a wide range of expertise to review highly complex medical cases.

In response:

• To help clarify what counts as a chronic infection, we have published detailed guidance on the specific evidence we are required to confirm. For a living person, if your most recent tests are negative, it is likely that you cleared acute Hepatitis B and the infection never became chronic. Unless there is historical information that shows otherwise, you are not eligible for compensation for Hepatitis B. You can find more information on our guidance page about chronic Hepatitis B.
• We have confirmed our guidance around cirrhosis and severity levels on IBCA’s website so it is available to everyone. To pay a person compensation at severity Level 3, we must be confident that they have or had cirrhosis or serious scarring that is consistent with cirrhosis. If it is written in your medical records, this is considered evidence of cirrhosis. If your medical records confirm that you had or probably had cirrhosis or serious scarring that is consistent with cirrhosis caused by your infection, your compensation will not be reduced, even if your liver health improves over time. You would still be paid at infection severity level 3.
• A clinical advisory panel is currently being recruited, and will have a range of medical expertise represented. We also have clinical advisors that support claim managers where needed.
• Regarding concerns that the special category mechanism fails to properly recognise Thalassemia as a distinct condition, we will raise this issue with the Cabinet Office.
• To address concerns about medical expertise and clarify how complex cases are reviewed: our Claim Managers do not make medical decisions alone where they are complex. They are supported by a team of contracted clinical advisors who review available evidence and provide medical opinions on cases where needed.

8. Evidence requirements and medical records

Feedback from the community:

• People are arriving at the claims stage unsure of what to do, potentially with incomplete files and no clear ‘support manual’.
• There is anxiety that missing evidence will block claims, e.g. sometimes asking for 1980s records that are known to be destroyed.
• We have been asked to explain challenges around retrieving NHS records to make sure people are clear on what the process involves.

In response:

• We have added more information to our community updates acknowledging that getting NHS records can take time and be complex.
• Missing evidence will not stop you from starting your claim. Your Claim Manager will work with you to help to identify where we can support in obtaining evidence and to assist you in identifying the evidence you may hold to support your claim.
• We are working directly with NHS clinicians to streamline our evidence forms, ensuring we are as clear as possible about what is required. This will speed up the process, and make sure that we only capture necessary evidence and avoid duplication.
• We are developing clearer guidance on the most commonly needed evidence, which we will publish. We also work with NHS clinicians to share understanding of what information IBCA needs.

9. 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.
• We’ve been understanding how we can provide the right information at the right time to people making a claim or preparing to do so. Through research, we heard that the website can be text-heavy and it can be difficult to find the right information without support. We also heard it isn’t always easy to distinguish what information is new. Through this research, we’ve been looking at ways to improve the website along with community updates, which we know is a crucial source of information for the community.
• We’ve also been researching how to better support people through the claims process. Through this, we heard the importance of providing clearer information on supporting documentation, decision-making and eligibility. We also learned more how we can support people with multiple claims and the value of existing claim manager relationships. We’re looking at ways to better support people navigating other processes, including understanding the transfer of Infected Blood Support Schemes to IBCA and when someone wishes to make a complaint.
• Feedback from the survey we send to people after they’ve completed their claim (34 responses between April and June) showed that 76% had a positive experience with their claim. This is down from 86% between January and March. Positive feedback included praise for claim managers for providing regular, clear and helpful updates throughout the claim journey. However, others highlighted that the process has been slow, complicated and frustrating. We heard specific challenges around identity verification and the provision of documents, the inability to cross check information between different claims, and a lack of information around when claims can progress. This was highlighted as particularly challenging for those nearing the end of their life.
• We also did research with IBCA staff to improve how we support people through the service, how we communicate the outcome of a claim and how we share learnings from our three model offices. Research topics included authentication, supporting documents, changes in severity and circumstances, disclosing information and protecting people from fraud.

In response:

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