FOI 0073 - Infection type and severity

Requested: 24 November 2025

Responded: 23 December 2025

Published: 17 February 2026

This is IBCA's response to Freedom of Information (FOI) request.

Thank you for your correspondence dated 24 November 2025 in which you requested a review of the response 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

On 4 November 2025, you asked:

In order to refine my request and bring it within the appropriate cost limit, I would like to narrow the scope of my request to data relating only to Stage 4 (Decompensated Liver Disease) claimants, specifically in relation to their cirrhosis progression prior to decompensation.

Please provide the following information:

1. Total number of Stage 4 claimants (living infected) under the Infected Blood Compensation Scheme.

2. Average duration in years of Stage 3 cirrhosis for all Stage 4 claimants — calculated from the earliest date when cirrhosis was first medically identified to the date when decompensated liver disease was first confirmed.

No other categories or disease stages are included in this refined request.

IBCA's response:

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.

The cost of complying with your request exceeds the ‘appropriate limit’. This is because in order to respond to the request, IBCA would need to search the mailboxes and personal drives of a large number of staff. The searches would need to include staff from more than just one team. We have conducted a sample exercise of one person’s mailbox using a couple of key word searches and it will take a minimum of 35 hours to review these emails. This is in excess of the ‘appropriate limit’ of £450/18 hours of staff time. Therefore, IBCA is unable to provide you with the information you are seeking.

IBCA is unable to fulfil the entirety of your request. The reasons for this are set out below.

Section 12 of the Freedom of Information Act 2000 exempts IBCA from the duty to comply with a request for information if the estimated cost of complying would exceed the ‘appropriate limit’. The ‘appropriate limit’ is specified in The Freedom of Information and Data Protection (Appropriate Limit and Fees) Regulations 2004, and for IBCA this is set at £450.This represents the estimated cost of one person spending 18 working hours in determining whether IBCA holds the information, locating, retrieving and extracting it.

Regulation 4 (4) of the Fees Regulations 2004 sets out that costs incurred in determining whether the requested information is held, locating, retrieving and extracting information are to be estimated at a rate of £25 per staff member per hour, expected to be spent on those activities. This represents the estimated cost of one person spending 18 hours in determining whether IBCA holds the information and locating, retrieving and extracting it. Where the time for compliance with a request would exceed 18 hours, a request can be refused.

The cost of complying with your request exceeds the ‘appropriate limit’. While IBCA does hold records that contain information relating to Stage 3 and Stage 4 claimants (living infected), however, the data we hold is unstructured and we would need to conduct further investigations to understand if a claimant has cirrhosis or not. A very conservative estimate is that it would take up a significant amount of staff time on average a minimum of 700 hours. This is in excess of the ‘appropriate limit’ of £450/18 hours of staff time. Therefore, IBCA is unable to provide you with the information you are seeking.

Under section 16 of the Freedom of Information Act, IBCA has a duty to provide advice and assistance when refusing a request under section 12, to assist applicants in refining their request. IBCA may be able to comply with your request within the appropriate limit if you were to refine and limit the scope of your request to the number of Stage 4 paid claims. These are the claims that have gone through the IBCA claimant process.

Your request for an internal review

On 24 November 2025 you sought an internal review:

Your response contains contradictions, unsupported assumptions, and no evidence that a proper search or meaningful assessment of the request was undertaken. For the reasons below, I do not accept that the cost limit applies.

1. The cost estimate is not evidenced and appears unfounded

Although you responded promptly, your refusal letter provides no explanation of any steps taken to identify or locate the information, nor any sampling exercise, nor any attempt to understand the structure of the data.

A "very conservative estimate" of 700 hours is stated without:

• any breakdown of tasks,
• any explanation of why such time would be required,
• any indication of how many records would be involved,
• any description of how the information is stored, or
• any evidence of having attempted even the simplest extraction.

An unexplained number is not a valid Section 12 estimate.

2. The refusal contradicts your own Section 16 advice

Your refusal states that you could comply with a refined request for the number of Stage 4 paid claims.

This indicates:

• You already hold a dataset identifying Stage 4 claimants.
• You can extract information relating to Stage 4 claimants.
• Stage 4 data is therefore structured and accessible.

Given that Stage 4 decompensated liver disease cannot occur without prior cirrhosis (Stage 3), it follows logically that:

• All Stage 4 claimants must already have documented Stage 3 evidence in the same assessment records.
• The dates of Stage 3 identification and Stage 4 diagnosis must be recorded because they are required to determine eligibility and progression.

Therefore, the information I requested — the duration between Stage 3 and Stage 4 — clearly exists within the same set of records you already extract Stage 4 data from.

Your own advice under Section 16 undermines the justification for refusal.

3. The underlying clinical information must exist

For every Stage 4 award, the assessment cannot be completed without:

• Confirmation that cirrhosis (Stage 3) existed, and
• Medical evidence of the date decompensation occurred.

This is a core requirement of the scheme.

Therefore:

• These dates must already be collected, stored, and used by the IBCA.
• They cannot require a 700-hour manual exercise to locate.
• The information requested is inherently part of the Stage 4 claimant process.

4. What I am requesting from the Internal Review

I request that the reviewer:

• Overturn the Section 12 refusal, as the estimate provided is unevidenced and inconsistent with IBCA's own acknowledgement of holding Stage 4 data.
• Confirm that the information is held within claimant assessment records.
• Provide the information originally requested:
  • The total number of Stage 4 claimants (living infected) under the scheme.
  • The average duration of Stage 3 cirrhosis prior to Stage 4 decompensation, based on the dates already held within those assessment records.

5. Review process

Please confirm who will conduct the Internal Review and when I should expect a response.

In response:

Following an internal review of our initial response, we have determined that the original decision was correct. Section 12 (Exemption where cost of compliance exceeds the appropriate limit) has been applied lawfully.

1. Cost and Resource Estimation

Under the Freedom of Information Act, a public authority is not required to comply with a request, or even confirm whether the information is held, if the cost of doing so exceeds the "appropriate limit."

We estimate that processing your request would require a minimum of 700 hours, totalling a cost of approximately £17,500. This significantly exceeds the threshold set for public authorities.

2. Technical Challenges

Both your original request regarding cirrhosis and your subsequent narrower request face the same barriers:

• Non-Standardised Data: IBCA holds data from two main sources: payment stage declarations and legacy scheme data. Currently, these datasets use different definitions for infection stages and are not standardised.
• Unstructured Records: Specific clinical details (such as the nature of a condition) are not currently aggregated. This information is held within individual evidence spreadsheets or manual documentation.
• Manual Retrieval Required: To provide an accurate response, IBCA would need to manually review every individual claim record to identify if the specific data exists.

3. Duty to Confirm or Deny

Because the process of identifying whether we hold the specific data you seek would itself exceed the cost limit, IBCA cannot confirm or deny the existence of the information requested. While we may hold partial data for some individuals, we cannot verify a total figure without a manual audit of all files.

4. Assistance

Although we cannot fulfil your request in full for the reasons stated above, we are pleased to provide the following information as of 16 December 2025 to assist you:

Claims Paid by Stage: We can provide figures for the number of claims paid at each stage. However, please note the following caveats regarding this data:

• Recurring Payments: These figures include recurring payments made to single claims.
• Data Divergence: Because of these recurring entries, these totals will not align with the "number of claims paid" figures regularly published by IBCA.

Infection severity (Current)
Level 2
Level 3
Level 4
Level 1
Level 2
Level 3
Level 4
N/A
Level 2
Level 3
Level 4

Data Mapping Limitations: While IBCA holds infection status and severity levels for claimants based on data inherited from previous schemes, there is a significant technical barrier to standardising this information:

• Non-Equivalence: Legacy scheme data only extends to "Level 2" and the definitions vary significantly between different schemes.

• Scale Mismatch: Consequently, IBCA cannot establish a reliable or accurate equivalence between these varying legacy descriptions and the current severity scale used by IBCA.

After thorough consideration of these factors, we have determined that the original response was correct. The complexities of the data sets and the manual resource required to reconcile them mean that the cost of compliance remains above the appropriate limit.