Thank you for your correspondence dated 2 April 2026 in which you questioned the response provided to your request for access to certain information which may be held by the Infected Blood Compensation Authority.
As you may be aware, the purpose of the Act is to allow a general right of access to information held by a Public Authority (including the Infected Blood Compensation Authority) subject to certain limitations and exemptions.
Your initial request
I request the following information relating to living infected individuals who have never previously received compensation under any infected blood support scheme or payment scheme.
1. The total number of living infected individuals in this category currently known to the Infected Blood Compensation Authority.
2. Within this group:
a. The number recorded as end of life.
b. The number recorded as having advanced liver disease.
3. Of the individuals identified in Question 2:
a. The number of end of life individuals who have been contacted or invited to begin their compensation claim process.
b. The number of individuals with advanced liver disease who have been contacted or invited to begin their compensation claim process.
4. The total number of living infected individuals (who have never previously received compensation) who have been contacted or invited to begin their claim process to date.
5. With regard to the affected group:
a. The total number of affected individuals registered with IBCA.
b. The number of affected individuals recorded as end of life.
Our response
We have now had the opportunity to fully consider your request under the Freedom of Information Act 2000 (FOIA) and have provided a response for your attention below.
1. The total number of living infected individuals in this category currently known to the Infected Blood Compensation Authority.
AND
5. With regard to the affected group:
a. The total number of affected individuals registered with IBCA.
Section 21: Information accessible by other means (FOIA)
We have established that the information you requested is held by the Infected Blood Compensation Authority. This information is exempt from disclosure under section 21(1) of the Freedom of Information Act, being information that is reasonably accessible to the applicant by other means. Section 21 is an absolute exemption and IBCA is not required to consider whether the public interest favours disclosure of this information.
In order to assist you, the information is readily available on the IBCA website on our Compensation Statistics page. You can find the 26 March 2026 update HERE. This information is provided with the caveat that we are unable to confirm with the data we have if the registrations have previously received compensation.
2. Within this group:
a. The number recorded as end of life.
AND
3. Of the individuals identified in Question 2:
a. The number of end of life individuals who have been contacted or invited to begin their compensation claim process.
AND
4. The total number of living infected individuals (who have never previously received compensation) who have been contacted or invited to begin their claim process to date.
AND
5. With regard to the affected group:
b. The number of affected individuals recorded as end of life.
Section 22(1) FOIA: Information intended for future publication
We have established that the information you requested regarding the above questions is held by the Infected Blood Compensation Authority. The information you have requested is being withheld as it is exempt under section 22(1) of the Freedom of Information Act (“the Act”).
Section 22(1) protects information intended for future publication. Section 22(1) is a qualified exemption and we have considered whether the balance of the public interest favours maintaining the exemption in section 22(1) or disclosing the information. We recognise the public interest in demonstrating transparency by releasing information to the public. We also appreciate that this increases public trust and that the public benefits from being kept informed about matters affecting them. However, there is a public interest in cost effectiveness in how public authorities publish information.
Section 22(1) acknowledges that public authorities must have freedom to be able to determine their own publication timetables. This allows them to deal with the necessary preparation, administration and context of publication. It is a part of the effective conduct of public affairs that the general publication of information is a conveniently planned and managed activity within the reasonable control of public authorities.
As there is a commitment to publish, we are reasonably entitled to make our own arrangements to do so. After weighing up the competing public interest considerations, we consider it is reasonable, in all the circumstances, that the information held should be withheld from disclosure until the future date of publication (section 22(1)(c)) and that the public interest in maintaining the exemption outweighs the public interest in disclosure at this time.
2. Within this group:
b. The number recorded as having advanced liver disease.
AND
3. Of the individuals identified in Question 2:
b. The number of individuals with advanced liver disease who have been contacted or invited to begin their compensation claim process.
We have established that the information you requested is held by the Infected Blood Compensation Authority. Some of the information you requested is being withheld under section 40(2) of the Freedom of Information Act.
Section 40(2) exempts personal information from disclosure if that information relates to someone other than the applicant, and if disclosure of that information would, amongst other things, contravene one of the data protection principles in Article 5(1) of the UK General Data Protection Regulation and section 34(1) of the Data Protection Act 2018.
IBCA has considered the information and due to the extremely low numbers of individuals concerned, which are fewer than 10, disclosure would risk making them identifiable. Therefore, the number has been withheld under Section 40(2) of the FOIA.
In this case, we believe disclosure would contravene the first data protection principle, which provides that processing of personal data must be lawful, fair and transparent. We consider that disclosure of the information would contravene Principal A under article 5(1)(a) of the UK General Data Protection Regulation (GDPR), which requires that personal data should be processed lawfully, fairly, and transparently. We have considered the legitimate interests being pursued in the request and that these interests could be met only by disclosure of the information. We have found that, on balance, the legitimate interest and necessity in disclosure are overridden by the reasonable expectations of privacy of the individuals concerned.
Section 40(2) is an absolute exemption and the Infected Blood Compensation Authority is not obliged to consider whether the public interest favours disclosing the information.
Your email as of the 2 April 2026 stated
This request is made within the 40 working day period and should be treated as a formal request for internal review under the Freedom of Information Act 2000.
I am writing to request an internal review of the response provided to my Freedom of Information request (FOI0098).
While I appreciate that a response has been provided, I do not consider that the exemptions have been appropriately applied, nor that the information supplied adequately addresses the specific questions asked.
With regard to Section 21 (information accessible by other means), I was directed to the IBCA website. However, the published statistics do not answer my request. My questions specifically relate to living infected individuals who have never previously received compensation, and it is explicitly acknowledged in your response that this cannot be determined from the published data. Therefore, Section 21 does not appear to have been appropriately applied.
With regard to Section 22 (information intended for future publication), key information has been withheld without any clear timeframe for publication. Given that this request relates to individuals recorded as end of life or with advanced liver disease, there is a strong and immediate public interest in disclosure. The compensation scheme has effectively been operating in a “beta” phase since October, and it has now been approximately six months. Based on the information provided, it appears that only a very small number of individuals have been contacted or invited to begin their claims. This is deeply concerning and, in the context of a cohort where individuals are seriously ill and some are dying each week, this level of delay and lack of transparency is unacceptable.
The absence of clear information has significant psychological consequences. Individuals in these categories are living with serious and life-limiting conditions, and uncertainty around whether they have been identified, prioritised, or contacted creates avoidable distress and anxiety. In these circumstances, the balance of public interest strongly favours disclosure now, rather than at an unspecified future date.
With regard to Section 40 (personal data), I understand the need to protect individual identities. However, the statement that relevant figures are “fewer than 10” lacks clarity. It is not clear whether this refers to the total number of individuals with advanced liver disease, or only those who have been contacted or invited to begin the claims process. Given the known scale of serious liver disease within the infected population, it seems highly unlikely that the total number of such individuals would be fewer than 10. Therefore, it appears that this figure may instead refer to the number contacted, which raises further concern about the pace and reach of the scheme.
This ambiguity significantly limits the usefulness of the response. I would request that this is clarified, and that aggregated figures are disclosed where possible without compromising personal data.
Overall, the response does not provide sufficient transparency regarding the progress of the compensation scheme, particularly for the most vulnerable groups. There is a strong public interest in understanding how many individuals in high-priority categories have been identified and contacted, especially given the time that has elapsed since the scheme became operational.
I would therefore ask that the response is reviewed, that the application of exemptions is reconsidered, and that further information is disclosed where possible.
Our response
Whilst revisiting our original response to you, we have arrived at a different decision than previously outlined. Although, we do not agree with all of the points you raise, we offer a new and revised response that supersedes the previous response under this reference.You asked for information about living people who were infected by contaminated blood and have never received compensation before. When someone first signs-up (registers) with IBCA, they are not asked if they have received compensation in the past. IBCA only gathers that information later on when it is preparing the claim data as well as during the first phone call with a claims manager.For your reference, here are the questions we ask during the initial registration:For the person making the claim:
- Are you registering for yourself?
- Are you the person who was infected, or someone affected by it (or both)?
- Name
- Date of birth
- Address
- Preferred contact method
- Phone number
- Email address
- Any specific contact preferences?
- Preferred language
- Which infections do you have (or have you had)?
- Do you have specific health conditions or need certain treatments (e.g., liver cancer, cirrhosis, or a transplant)?
- How were you infected?
- Details about the person infected through NHS treatment.
- Their date of birth.
- Are you nearing the end of your life?
- Would you like an email confirmation?
- Email address (again, for confirmation).
If someone is registering on behalf of an individual, they are also asked:
- Who are you registering for?
- How are you helping with the claim?
- What is your relationship to the person?
The registration form does not require a formal ID check to submit. This means:a) Duplicates exist as people sometimes register more than once. IBCA is working to remove duplicate registrations to ensure its data is accurate.c) When IBCA asks someone to start their claim, manual checks are undertaken to make sure they are not already in the system.Under the Act, there is a limit on how much staff time IBCA can spend answering a single request (18 hours). Because IBCA is still cleaning up thousands of records we cannot provide a 100% clean list of every single registration within that time limit. Therefore, the answers provided today are based on a mix of Claim Data (Information from people who have already started the formal process, where duplicates have been checked for) and Registration Data (the raw list of people who have registered.)IBCA is currently scaling up its work on Living Infected Never Compensated (LINC) claims and the number of claims processed has grown significantly since our last response.
1. The total number of living infected individuals in this category currently known to the Infected Blood Compensation Authority.
The total number of known living infected registrations (and registrations submitted as both infected and affected) is 1587. The total number of prepared LINC claims is 1011.
2. Within this group:
a. The number recorded as end of life.
Of the 1011 prepared LINC claims, 63 are recorded as being end of life.
b. The number recorded as having advanced liver disease.
Of the 1011 prepped LINC claims, 256 are recorded as having a severe disease as a result of their infection (taken from the registration data).
Please note that the list of conditions IBCA asks about in the registration form is:
- cirrhosis
- non-Hodgkin's lymphoma
- type 2 or 3 cryoglobulinemia with membranoproliferative glomerulonephritis
- liver cancer
- need for a liver transplant
This mostly includes liver conditions, but not exclusively.
3. Of the individuals identified in Question 2:
a. The number of end of life individuals who have been contacted or invited to begin their compensation claim process.
Of the 63 recorded as end of life, 49 are currently recorded as having been started.
b. The number of individuals with advanced liver disease who have been contacted or invited to begin their compensation claim process.
Of the 256 claims recorded as having severe disease as a result of their infection, 233 have been started.
4. The total number of living infected individuals (who have never previously received compensation) who have been contacted or invited to begin their claim process to date.
As indicated previously, the answer to this question is available as part of our statistics publication, the latest of which can be found here: https://ibca.org.uk/statistics/registration-and-compensation-progress-update-23-april-2026/.
5. With regard to the affected group:
a. The total number of affected individuals registered with IBCA.
On 23 April 2026, this figure was 14,183.
b. The number of affected individuals recorded as end of life.
111 prepared affected claims are marked as end of life, with an additional 99 not included in the prepared claims list but included in the registration data. The total number of affected registrations recorded as end of life is 222.