Transparency data

Summary of written responses to the roundtables

Updated 14 April 2026

The roundtables were targeted engagement undertaken by the Technical Expert Group, separate to the Government’s public consultation held on proposed changes to the Infected Blood Compensation Scheme. Each roundtable had a background paper published in advance of the meeting. This is a summary of responses received from the key stakeholders and charities asked to comment on roundtable background papers. These summaries have been created by Cabinet Office officials and reviewed by the TEG. The roundtable paper on SCM estates received no responses.

Special Category Mechanism roundtable background paper: Written responses summary

This is a summary of responses received from the key stakeholders and charities asked to comment on the Special Category Mechanism roundtable background paper published on 1 December 2025. This summary has been created by Cabinet Office officials.

About the responses

36 key representative organisations and charities in the infected blood community were invited to provide a written response to the questions in the background paper (see Annex A for full list). 7 responses were received from: 

• UK Thalassaemia Society
• Families of Deceased Infected Blood Victims UK
• Mono-HCV Haemophiliacs 
• Contaminated Blood Women
• An independent longstanding campaigner
• Haemophilia Wales
• Haemophilia Scotland

All responses were read in their entirety by officials. The written responses were all shared with the TEG for their review. Officials then identified key themes from the written responses to create this summary. The TEG reviewed this document to ensure the themes were accurately summarised.

Summary of themes by question 

Question 1: How do we establish eligibility for SCM in the scheme for those not registered with an IBSS in line with the principles of a tariff based scheme? What evidence is likely to be accessible to people that would meet the other evidential criteria on which the Scheme is based?

Responses pointed to existing forms of documentation as accessible evidence, with some advocating for streamlined processes to avoid further delays:

• The most common evidence suggested includes medical records such as GP and hospital records and treatment histories (e.g with interferon)
• Evidence of disability or inability to work, such as records from the DWP regarding benefit claims, or occupational health records, were also cited
• One response suggested the applicant should contact IBCA with a simple form (similar to the EIBSS SCM form) to make the process easier
• One response suggested to circumvent long NHS waiting times, that a doctor’s referral and/or medical history should be deemed sufficient, rather than requiring sign-off from a specialist or consultant. Another noted that providing new clinical evidence for those not under care of a hepatologist placed “additional burden on the NHS” 
• Two respondents strongly advocated for the principle of self-declaration, noting it has operated successfully for years in Scotland (9 years) and Wales (since 2019)
• One organisation stated that self-declaration promotes a relationship based on trust, recognises the individual’s perception of their health, and avoids “detailed and potentially damaging clinical assessment”
• One respondent suggested that concerns regarding fraud could be managed by “limited verification of a percentage of claims,” rather than universal clinical assessment.

2 responses expressed strong opposition to the 2017 start date, arguing it discriminates against those who died before the mechanism was established. 

Question 2: Can the existing SCM criteria be applied to cases of Hepatitis B infection, which was previously excluded by the support schemes, or do the patterns and causes of long-term disability differ in ways that require different eligibility criteria?

There was consensus in responses that Hepatitis B should be included in SCM-equivalent recognition if the resulting health conditions and long-term disability are comparable to those caused by Hepatitis C.

Multiple responses stated that the existing SCM criteria can be applied, provided the “severity and functional impact of harm are comparable” or the person meets “the same threshold for severe health conditions and long-term disability.”

One response stated that the uncertainty of “reactivation” of Hepatitis B should be taken into consideration and that it was inequitable to limit awards to those with acute HBV to cases where it caused death.

Question 3: How do we determine evidence that links SCM related impacts to impacts on an infected person’s ability to earn or care for themselves?

Responses recommended accessing a wide range of documentation, indicating that no single piece of evidence is sufficient to establish the link. The required evidence fell into four main categories:

• Medical records (GP records, consultant/clinic letters)
• Records of benefits as well as employment and pension records.
• Occupational health assessments
• Social care records
• Contemporaneous evidence i.e personal statements and personal diaries

Multiple responses raised that the impacts on a person’s ability to earn or care for themselves are not generic and require a flexible approach from IBCA. Some quotes are provided below:

• One response said “all applicants will differ” and the question “is not a question we believe can be answered generically.”
• IBCA should “trust the information that was submitted by the applicant and their health care representative.”

One response stated the community needs “detailed information from those who designed the conditions and the framework” of SCM to understand it. This response stated “Seeking a one size fits all approach here is not helpful.”

One respondent highlighted that the legal definitions of medical conditions are “lengthy and technical,” requesting that the IBCA provide “simple terminology” to help applicants understand the nature and effect of these conditions.

Question 4: What observations do participants have on the TEG initial advice that, within the confines of a tariff based scheme, it would only be possible to assess long-term mental health impacts outside of the existing Severe Health Condition in relation to living victims?

One organisation questioned the “appropriateness and essence” of using a tariff-based scheme for this purpose. One organisation highlighted that Wales has had a dedicated psychology service for nearly 15 years, and that Stage 1+ payments were specifically introduced for those experiencing mental health issues or PTSD related to their infection. Two key themes were identified in the responses. 

Distinguishing between the living and deceased for eligibility for SCM, and physical and psychological harm:

• One response argued that restricting the recognition of severe mental health impacts to only living victims reintroduces a distinction between physical and psychological harm that the “Inquiry explicitly rejected.”
• One response stated severe psychological harm is often inseparable from physical harm and contributes to physical decline, loss of employment, and death
• One response stated there is “no principled reason why severe psychological harm suffered during life cannot also be recognised retrospectively.”
• One response disagreed that assessment can only be done for the living, and stated medical professionals that treated the deceased can evidence certain impacts. This response also asked for further discussion of the appropriateness and essence of the proposed tariff-based system.
• One response stated that mental health impacts should be considered alongside severe psychological harm to ensure a clear differential is established between the two types of award.

Some objection to further new assessment

• One response was concerned that forcing a “group of already vulnerable people to have regular mental health checks to qualify is simply unfair”, citing stigma (mentioned in relation to men’s mental health/suicide rates)

Recognition of harm caused by interferon treatment roundtable background paper: Written responses summary

This is a summary of responses received from the key stakeholders and charities asked to comment on the ‘Recognition of harm caused by interferon treatment’ roundtable background paper published on 16 February 2026. Responses were received by 2 March 2026. This summary has been created by Cabinet Office officials. 

About the responses

36 key representative organisations and charities in the infected blood community were invited to provide a written response to the questions in the background paper (see Annex A for full list). 8 responses were received from: 

• Hepatitis B Trust
• Haemophilia Scotland
• Mono HCV Haemophiliacs
• Former Treloar’s Pupils 
• Misdiagnosed Victims
• UK Thalassaemia Society
• Hepatitis C Trust

All responses were read in their entirety by officials. The written responses were all shared with the TEG for their review. Officials then identified key themes from the written responses to create this summary. The TEG reviewed this document to ensure the themes were accurately summarised.

Where helpful to articulate themes of responses the following language was used:

• Most: 6 or more responses (75%+)
• Many: 4 to 5 responses (50%–75%)
• Some: 1 to 3 responses (10%–50%)

Summary of themes by question 

Question 1: What issues arise from the proposal for a Level 2B band rather than a move to Level 3 for all those who were treated with interferon?

Most (8) responses said that the Level 2B proposal would fail to recognise the severity of harm. Most (6) respondents argued for an automatic move to Level 3, to ensure the process is simpler, fairer, and reflects the true impact of the treatment. Most (6) said the award amount for Level 2B under-recognises the long-term effects of interferon (with some specifying the level of care and financial loss award underestimate the lived experience of interferon treatment).

Many (5) said a single award for Level 2B ignores the damage from further rounds of interferon treatment.

Some (3) concerns were raised that those already at Level 3 or 4 (e.g., due to cirrhosis or HIV co-infection) receive no additional benefit or recognition for the specific harm caused by interferon.

2 responses said the new Level 2B band would be “unwieldy” or “time-consuming” for IBCA to implement.

Question 2: Is the 48-week standardised treatment period an appropriate rule to minimise the burden of proof?

Most (6) responses said a 48-week rule fails to account for people who underwent multiple cycles of treatment.

Many (4) expressed concern that the rule excludes or penalises those who “crashed out” or stopped treatment early (often before 12 weeks) due to severe, toxic side effects. 4 responses noted that standard treatment for certain genotypes or combinations (e.g., with Ribavirin) was 24 weeks, not 48.

Some (2) responses said that a standardised period is a helpful starting basis because medical records are often incomplete, lost, or destroyed. 2 said the award should be based on the effects starting from the first use of interferon. 2 responses gave no view on the question.

Question 3: What evidence of interferon treatment is likely to be available in order to ensure that people will be able to demonstrate eligibility?

Most responses (7) said medical records (such as from GPs, consultants, clinic letters, appointment notes) could be used.  Some (3) mentioned specific records such as: prescriptions or pharmacy dispensing records; psychological or psychiatric notes; and blood transfusion records.

Many responses (4) had concerns that medical records were often lost, destroyed, or incomplete due to moving GP.

Some (4) said personal and witness testimony could be used, such as from the Inquiry, family members or personal diaries.

Some (2) responses suggested using proof of Sustained Virological Response (SVR) or HCV core antigen tests to verify eligibility.

One response noted that unlike initial infection records, records of interferon may be easier to find as some were held electronically, or referenced in Inquiry statements.

Question 4: Was it common for people to need to purchase care for more than 16.5 hours per week during their course of treatment?

Many (4) said the care amount in the question was an “unrealistic guide” and underestimated the level of requirement needed. Many (4) noted care was “rarely purchased”, instead family members provided this gratuitously, often giving up work to do so.

Some (3) cited that severe fatigue, cognitive impairment, and “flu-like” symptoms made daily functioning impossible without significant help. Some (2) gave the view that whilst 16.5 hours might be a baseline, requirements varied significantly based on the length of treatment, and number of rounds.

Question 5: Are the assumptions regarding financial loss (reduction to 20% earning capacity for two years and a reduction to 60% thereafter) reflective of the lived experience of the majority of interferon patients?

Many responses (5) said that people suffered 100% financial loss (total inability to work) during and after treatment. Many (4) said the 2 year window was insufficient as they never regained previous earning capacity or their career ended completely. Some (3) said that these assumptions do not reflect the lived experience. 

Question 6: Would supplementary awards for people with long-term psychological harm better recognise those with permanent side effects than a specific interferon-related award?

Many responses (5) argued against supplementary awards, stating they are “unclear,” shift the “burden of proof” back to victims, and fail to recognise that harm is a direct result of interferon treatment.

Some responses (3) said that conditions like depression and anxiety are “well known” and “directly linked” to interferon itself, necessitating a specific award.

Severe psychological harm roundtable background paper: Written responses summary

This is a summary of responses received from the key stakeholders and charities asked to comment on the ‘Severe psychological harm’ roundtable background paper published on 16 February 2026. Responses were received by 10 March.

About the responses

36 key representative organisations and charities in the infected blood community were invited to provide a written response to the questions in the background paper (see Annex A for full list). 6 responses were received from: 

• The Hepatitis B Trust
• Independent Widows
• The Hepatitis C Trust
• Haemophilia Scotland
• UK Thalassaemia Society
• Infected Blood Psychological Support Service
• Positive Women

All responses were read in their entirety by officials. The written responses were all shared with the TEG for their review. Officials then identified key themes from the written responses to create this summary. The TEG reviewed this document to ensure the themes were accurately summarised. 

Summary of themes by question 

Question 1: How common is it for people’s mental health to have been formally assessed by psychological professionals?

All responses highlighted that it was either rare (2) or very rare (4) for mental health to have been formally assessed by psychological professionals. Respondents also used this question as an opportunity to provide reasons as to why individuals may not have been formally assessed, including:

• Social stigma (“sign of weakness or failure”) 
• Limited availability of support 
• Services were not offered 

Question 2: What evidence is likely to be available to show that people’s mental health has been affected by their infections in ways that led to them suffering a greater loss of the ability to work than is recognised by the core awards?

Most (4) responses emphasized that personal testimony and self-reporting are the most reliable forms of evidence, as individuals and their families are best placed to describe the narrative of psychological harm and its impact on daily life.

Many (3) respondents pointed to tangible medical and professional records, such as long-term use of antidepressants, psychotherapy history, and employment data where mental health or sickness was explicitly cited as the reason for time off or resignation.

Some (2) responses highlighted the loss of life milestones and social connections as key evidence, specifically looking at whether individuals have been without “love, kids, or travel” or have become estranged from family due to their psychological state.

Some (2) suggested that socio-economic data regarding career trajectories would provide evidence of loss, noting that stigma and shame often led people to make path-changing decisions regarding education and pay progression.

1 response noted that while medical records are useful, long-term counseling or psychotherapy history is unlikely to exist in many formal records. 

1 response cited existing literature reviews as a wealth of evidence that already supports the link between these infections and significant mental health impacts.

Question 3: Given that many people have been unable to access specialist treatment for psychological and psychiatric difficulties, how could the risk that Severe Health Condition awards could exacerbate inequities be reduced?

Many (3) responses argued that the scheme must move away from a reliance on formal specialist treatment records, as these are often unavailable. Using this form of evidence runs the risk of reinforcing existing inequities for those unable to access care.

Some (2) respondents suggested that the most equitable solution is to adopt utmost flexibility in the administration of the scheme, ensuring that any relative evidence (beyond formal medical records) is considered acceptable for the SHC award.

1 response advocated for a more holistic assessment of loss, proposing that the scheme should compensate for the destruction of life milestones, such as the loss of family, love, and functionality. 

1 response recommended the implementation of a core psychological tariff based on a set formula to ensure consistency across the scheme, and to prevent the claiming process from slowing down.

1 response proposed that the only way to truly reduce inequity is to offer a comprehensive psychological assessment to any infected individual who believes their mental health has been severely affected, providing a formal path to evidence that does not rely on past treatment history.

Question 4: How might the ways in which psychological harm is recognised in the Scheme be better explained? Could the use of language from the lived experience help the Government explain this better?

1 response proposed that the Government provide a clear definition distinguishing psychological harm from a psychiatric diagnosis, explaining that harm can be severe even without a formal clinical label.

1 respondent advocated for increased accessibility, specifically suggesting that documents avoid medical jargon and be written for a reading age of 9 - 11 years to ensure they are easy to understand. They also suggested that explanations should use clear, straightforward language drawn from the lived experience of those affected. 

1 respondent suggested that lexicon used needs to include the psyche damaging events and build around those, including morbidity and mortality, infectivity and paranoia, isolation and stigma, brain fog and PTSD.

Supplementary route for people affected: written responses summary

Written responses were received from a representative of one organisation which addressed the questions that the TEG had asked in the background paper. The respondent proposed that any supplementary route should operate through objective triggers and practical options that preserve the efficiency of the existing scheme while allowing those with the most severe harms to seek additional recognition. This proposal included; an ‘automatic bereavement uplift’ where an infected individual is deceased, additional uplift for families who experienced multiple infected relatives or multiple deaths, a ‘dual route’ approach for affected individuals, giving them the option to pursue either a core tariff-based route or a supplementary route involving individual assessment for severe harm.

The response listed a variety of groups that should receive compensation over and above that paid under the core award and detailed a series of impacts that they think should be compensated for as a supplemental award. This included: severe psychological trauma; breakdown of family stability; educational disruption; employment instability or lost economic opportunity; serious physical health conditions linked to prolonged trauma; social stigma and isolation; intergenerational impacts; and financial instability and life course disadvantage.