Transparency data

Technical Expert Group report

Updated 14 April 2026

Foreword from The Minister for the Cabinet Office

I wish to give my personal thanks to the Infected Blood Compensation Scheme Technical Expert Group (TEG) for the advice it has provided to support this Government in bringing long-overdue compensation to all victims of infected blood. I am grateful to all members of the TEG for the time, expertise and commitment they have given to this work. I am especially grateful to Professor Sir Jonathan Montgomery, as Chair of the TEG, for the leadership he has brought to this new group.

The TEG was established in September 2025 following the Inquiry’s Additional Report, to provide independent, technical advice on the Government’s proposals for changes to the scheme, which were tested through public consultation. The TEG has benefitted from the addition of new experts to the group, specialising in psychological medicine, transfusion medicine, and haematology. 

To help support the TEG in formulating its advice to the Government, the TEG held six roundtable discussions with members of the infected blood community. These events offered all key representatives of the infected blood community the chance to speak directly to the TEG about the issues raised in the Government’s consultation and their lived experiences. This engagement was separate to the Government’s public consultation. A background paper was published in advance of each meeting and the TEG welcomed any written responses to questions raised in the meeting paper.

I know how important transparency in decision-making is to the infected blood community. That is why we have published: the minutes of all TEG meetings; summaries of each roundtable discussion; summaries of the written responses following the TEG roundtables; background papers for each roundtable; and letters that the Chair and I have exchanged.

The Government is committed to delivering fair and comprehensive compensation to victims of the infected blood scandal and the work of the TEG has been instrumental in achieving this. I hope that this report offers assurance regarding the decisions made to amend the compensation scheme.

The Rt Hon. Nick Thomas-Symonds MP

HM Paymaster General & Minister for the Cabinet Office

Thanks and Acknowledgments

I am very grateful to my colleagues on the Technical Expert Group for their time, diligence, and advice. I have been impressed by their compassion and commitment to improve the compensation scheme in accordance with the recommendations of the Inquiry. 

On behalf of the group, I would also like to place on the record what was said at the roundtables about the value of the feedback that we have received from participants and the wider community. We were deeply moved by the willingness of people to explain the impacts of the wrongs that they have suffered. Our understanding of written materials was deepened by these direct explanations. We heard many suggestions for improvement that we have considered carefully. 

During the course of our work we lost Dr Ahmed Elsharkawy, who died in March 2026. Ahmed cared deeply about those harmed by infected blood and was dedicated to ensuring that the compensation scheme brought them justice. Ahmed’s example and inspiration has been in the minds of our group as we completed our work and we trust that his commitment is reflected in this report. 

Professor Sir Jonathan Montgomery FMedSci

Chair of the Infected Blood Compensation Scheme Technical Expert Group 

Introduction

In this report, we set out our advice to the Minister on the Recommendations of the Infected Blood Inquiry’s Additional Report that fell within our terms of reference. These are set out in the final part of this Report. The explanation of this advice can be found at the end of the section on the relevant recommendation under the heading ‘Conclusions and suggestions’. 

In order to increase the transparency of our work, we describe the process by which we came to give that advice. The general approach is set out in the section on Engagement, which covers the way in which roundtables were convened to inform the TEG’s thinking. For each of these roundtables, more detailed information can be found in the sections under the relevant Inquiry Recommendations. These sections summarise what we heard at those roundtables and also in written responses to the background papers that were circulated in advance.

It has become clear that there are elements of the compensation scheme that have not been well explained. We have therefore included a section addressing areas where we have heard questions about the rationale behind the structure of the scheme that provide a context for our advice on the specific recommendations. These typically concern issues that came up in relation to many of the recommendations we were considering and so it seemed most helpful to address them as part of the context for our work rather than repeating them in more than one section of this report.

Those readers who need only to find out what advice was given to the Minister for his consideration can move directly to the section entitled ‘TEG Advice to Government’. Those who wish to follow our reasoning in giving this advice can do so through the sections on each recommendation, which conclude with the advice we have given. Those who want a comprehensive understanding of how the TEG worked will need to read the full report.

We are very grateful to those in the infected blood community who have taken the time to respond to our invitations to engage and support us in the task Ministers gave us. We are also grateful for the support from the team in the Cabinet Office, who have supported our work diligently and with integrity. We have reached our conclusions independently but have benefited from excellent assistance in identifying material we have asked for, keeping records of our meetings, and making arrangements for the roundtables that we asked to be convened.

We believe we have made recommendations that would improve the compensation scheme. It will now be for the Government to decide how to take this forward. 

Role of the Technical Expert Group (TEG) 

The TEG has been asked to advise the Government on practical aspects of some of the recommendations made in the Inquiry’s Additional Report. The Government accepted seven of the recommendations about the design of the Scheme in the Additional Report immediately. In relation to five of the others the Government accepted the need for change and proposed to consult on the best way forward before reaching a decision on how the scheme should be amended. On two of the recommendations, the Government agreed to consult.

As policy is a matter for the Government to determine, TEG does not make policy decisions. It was convened to provide advice on options for implementing specified recommendations from the Inquiry, including on the practicalities and implications of such options. The public consultation and TEG’s advice will inform the policy advice that Cabinet Office officials provide to Ministers on the design of the Infected Blood Compensation Scheme. Ministers will make the final decisions on the Scheme’s design and scope.

Appointment

The Minister for the Cabinet Office appointed the TEG members. Some had been members of the previous Expert Group that had advised on the design of the compensation scheme giving continuity with that work. In accordance with the Inquiry’s recommendations, the Minister also extended membership to include additional clinical expertise in bleeding disorders, transfusion medicine, and psychological medicine.

The Terms of Reference provided that the TEG could engage beyond their membership and outside of the Cabinet Office to enhance their understanding of specific technical areas where appropriate in order to enable the group to respond to questions set out in the work programme. In particular we were able to undertake targeted engagement with members of the infected blood community although such activities did not replace the formal public consultation that the Government undertook. These activities could not delegate the TEG’s advisory responsibilities, nor confer membership or decision-making responsibility on external contributors.

The Cabinet Office set out the specific technical questions and topics on which the Government required specialist, evidence-based advice which relate directly to the Infected Blood Inquiry’s recommendations in the group’s technical work programme, summarising the key questions for discussion and listing supporting materials to be read alongside the Inquiry’s reports and evidence. This was published on our webpage.

Ways of working

The TEG worked virtually. The first meeting was held in September 2025. There have been 18 plenary meetings of the TEG, the minutes of which have been published on the Group’s webpage. Additionally, external meetings were held with the clinical lead of the England Infected Blood Psychology Service and with assessors from the England Infected Blood Support Scheme (EIBSS). Notes of these meetings are publicly available on the Group’s webpage. Five background papers have been published to provide context for six roundtables and sent directly to respondents for comment. Thirty eight invitations to join the roundtables were sent out and 26 people attended (individuals, some came to two). Twenty eight written responses were received. A final webinar was held on 17 March to explain how the TEG had worked. This was attended by representatives from 16 organisations and included a question and answer session.

Engagement

We are pleased that our terms of reference permitted us to undertake targeted engagement with members of the infected blood community as appropriate and proportionate to enable the TEG to complete its work programme within the time frame for the Government taking policy decisions following the closing of the consultation period. This targeted engagement was separate to the Government’s public consultation process.

Our approach has been to invite representatives from the group of stakeholders with whom the Cabinet Office has been liaising over the Government response to the IBI reports so that we could hear directly their views and concerns, test our emerging thinking and seek views on specific questions that we anticipated would need to be considered as we formulated our advice. In this way, we have sought to ensure that the TEG advice is informed by lived experience and wider professional views. We also hope that this will increase transparency about the TEG work process so as to ensure that the rationale and thinking in relation to all recommendations are available for scrutiny.

Each roundtable was supported by a background paper on the specific recommendation to be discussed. As a commitment to transparency, at least two weeks in advance of the meeting, the TEG published these papers on GOV.UK. In addition to the roundtables, the TEG invited written responses from the community to the questions in the background paper, to consider in its advice to the Government. These responses were all considered directly by the TEG.

We set out later in this report a summary of what we learnt from each of the specific roundtables and the issues that were identified. A list of participants and a record of the key points discussed has been published after confirmation of accuracy with participants. This does not attribute opinions to specific participants. 

We heard at the roundtables that the previous lack of engagement and transparency had impaired trust and caused considerable hurt. We were pleased to have the opportunity to listen carefully to both infected and affected representatives of the IB community, to try to build trust, and develop a greater understanding of the concerns about the compensation scheme. We hope that our approach over the past months demonstrates what we have learnt.

Phase 1: pre-consultation advice

In phase 1 of our workplan we were not able to arrange engagement events but had been clear that we would like to revisit our advice in the light of the responses to the Government’s Consultation.

In our letter of 30 October 2025 we gave initial views on:

• Recommendation 4a: Recognition of the impacts of interferon treatment
• Recommendation 4b Recognition of Special Category Mechanism (SCM)
• Recommendation 5a Severe psychological harm
• Recommendation 6b Exceptional financial loss
• Recommendation 8a Affected supplementary route

We explain below the conclusions that we reached on these issues when we had the benefit of our engagement meetings and responses that the Government received to its consultation which were shared with us by the Cabinet Office.

Phase 2: Final Advice

In the second phase of our workplan, we convened 6 roundtables in which we were able to hear directly from representatives of the infected and affected communities. The purpose of the roundtables was to facilitate targeted engagement with key organisation and charity representatives of the infected blood community to clarify evidence and test assumptions regarding the TEG’s advice to the Government.

Background papers were circulated to a wide range of stakeholders in advance of these roundtables and made public through the TEG pages on GOV.UK. A dedicated email address was set up so that written responses could be submitted. This was not limited to those to whom the paper had been directly sent. The background papers specified a time limit for submissions, usually two weeks after the roundtable, so that they could be taken into consideration in our reflections on what we had heard. We were also briefed by the Cabinet Office on responses to those consultation questions that were relevant to the specific recommendations from the Infected Blood Inquiry that were within terms of reference and considered what we could learn from them. 

We were able to hold two roundtables during the consultation period on the workings of the Special Category Mechanism. A background paper was circulated two weeks in advance of the first roundtable. These were attended by twelve representatives from the community. Seven items of written correspondence were received. 

Roundtables on issues raised by Interferon treatment, severe psychological harm, awards for those affected, and the positions of estates were held after the end of the consultation period. At the Interferon roundtable we heard from three groups and we received eight items of written correspondence. At the roundtable on severe psychological harm we heard from four groups and received seven items of correspondence. At the roundtable considering affected persons, we heard from five groups and received a written submission from one organisation. At the roundtable considering the extension of SCM to deceased persons, we heard from three participants. We did not receive any correspondence following this roundtable, although some of the issues raised had been included in earlier submissions.

Aspects of the Compensation Scheme as Established

In the course of the engagement we were asked to explain more clearly a number of aspects of the Scheme that had been approved by Parliament. In this section we address the most salient of these issues.

How tariffs work and why they speed up compensation payments

The Infected Blood Inquiry recommended tariffs for injury, social impact, and autonomy awards. This was intended to reflect the approach taken by the courts to general damages in personal injury cases. The Expert Group advised that a tariff approach could also be devised for care and financial loss awards. The Additional Report accepted this approach and made recommendations for revisions rather than a different structure.

A tariff approach brings the advantage that limited evidence is required to calculate awards and consequently compensation can be calculated more quickly and without retraumatising and intrusive inquiries. It also mitigates the challenges faced when records are missing. Court processes involving individual investigations have been criticised as causing extensive delays and disproportionate levels of legal costs in reaching quantification of care needs and financial loss. This was one of the reasons that the Inquiry did not propose following the model of the Republic of Ireland’s tribunal system.

A tariff approach has the disadvantage that individual circumstances are not explored. Some of the feedback that we received emphasised that every case is different or suggested that extensive individual investigations should be undertaken. This approach would run against the Inquiry’s recommendations and would delay compensation being paid. It would also be in tension with feedback that the compensation scheme is already complex, and that applying to the scheme is in itself traumatic, requiring people to re-live their experiences in order to gather evidence. We did receive suggestions for additional categories of core and supplementary awards but we have not advised that these be introduced beyond the areas where the Inquiry made recommendations. To have done so would have increased the complexity of the scheme and risked further delay to compensation being paid.

We understand that, as the Inquiry’s reports have pointed out, with a tariff approach, some people will get a higher award than they might under an individual investigation (for example, those who were not working when they were infected or were in low paid employment) but others might get less. As this cannot be avoided, the TEG used a baseline of average earnings + 5% with the aim that it was more likely that the scheme overestimated the loss than underestimated it.

How severity bandings were devised

Some degree of categorisation is necessary for a tariff-based scheme to work. The Infected Blood Inquiry, following the approach suggested by Sir Robert Francis in his compensation study, recommended that the compensation scheme should use severity bandings to avoid detailed investigations into personal circumstances when evidence was likely to be unavailable to many of those applying. The tariff-based approach means that awards cannot be precisely tailored to individual circumstances but can aim to provide ‘a broad level of payment which does justice when viewed across the board’ (as stated in the Inquiry’s Additional report at p 113).

The Inquiry anticipated that these would be developed with the infected blood community. The Additional Report was critical of the limited community involvement, even taking into account the engagement meetings undertaken by Sir Robert Francis and the changes made following his recommendations. However, with the exception of interferon treatment, it did not recommend fundamental change to the bands set out within the scheme.

The function of severity bands is to reduce the evidential burden on applicants. It does this by inferring the range of impacts that will probably have been experienced by those falling within a band rather than seeking specific and independent evidence. The severity bands used as the principal categorisation were based on evidence of infection with Hepatitis C, Hepatitis B, and HIV and, for those infected with hepatitis, the nature of their liver disease. 

Why hepatic markers were used

The rationale for using hepatic indicators was that the previous Expert Group believed they would be relatively easy to evidence from available records. The group additionally made a series of assumptions about lasting impacts of being infected with hepatitis, beyond the liver disease itself, particularly on people’s mental well-being (psychological harm), chronic fatigue, and ability to work (leading to financial loss). It used court decisions, and Judicial Council guidance on damages, from past cases with similar profiles as a guide to the levels of injury awards. Comparators were based on a holistic range of impacts, including those described in the evidence to the Inquiry. We also considered awards in the earlier infected blood litigation. None of these comparators were limited to the elements of liver disease. However feedback from the community made it clear that these assumptions were not clearly explained, giving an impression that non-hepatic impacts were not taken into account when quantifying the levels of awards.

How psychological impacts were recognised

Particular concerns were raised about a failure to acknowledge psychological impact. In this section we explain briefly how the scheme had previously assumed a level of psychological harm for every individual and taken that into account when proposing levels of compensation. This assumption, that everyone should be compensated for psychological harm without needing to provide specific evidence, was not clearly or sensitively communicated.

The primary way in which the Scheme provides compensation for psychological and psychiatric harm is within the core awards. This is intended to acknowledge that all people will have suffered this category of harm alongside the physical impacts of infection. No separate or specific evidence of psychological and psychiatric harm is necessary for the core awards as such serious and life-changing medical conditions will inevitably cause significant psychological impact. Two heads of loss (social impact and autonomy) were incorporated into the scheme as proposed by Sir Brian Langstaff to reflect psychosocial impact; for example, the psychological impacts of being subjected to societal stigma, and disrespect for autonomy. These go beyond court awards, although there is some overlap with the judicial category of ‘general damages’ for pain and suffering. The levels of social impact award were not subdivided between chronic hepatitis and greater liver disease. Nor were different viruses thought to lead to fundamentally different impacts, although those with co-infections receive £70,000 rather than £50,000 under this head of loss.

Injury awards were fixed at a level commensurate with judicial decisions in accordance with the recommendation of the Infected Blood Inquiry. Comparators (with the values of awards uprated for inflation) were taken from the National Blood Authority litigation (2001) and also from other personal injury cases involving serious debilitating illnesses, such as cancer and including liver damage. These were comparators where the impacts would include the potential for lifelong (physical and/or psychological) complications; for example multiple treatments with unpleasant side effects, reduction in life expectation, chronic pain and chronic fatigue. These comparators were chosen because they recognised that there is likely to be a significant psychological impact from these conditions that affects people’s ability to function. That impact was reflected in the injury award for all beneficiaries. There is no requirement to show that people have received psychiatric treatment or psychological therapy for them to receive compensation for this psychiatric or psychological harm.

Compensation for financial loss is also automatic in the core award. For chronic hepatitis (Level 2) it is calculated on the assumption that people will experience a 40% loss of earning capacity (for example being able to work only for three days a week, or the equivalent in reduced daily hours). No evidence is required to show that this is caused by the infection. The connection between the infection and lost income is inferred from the fact that we know that people experienced physical symptoms and psychological impacts that significantly affected their everyday lives, including their ability to work. Greater impacts on earning capacity, leading to increased financial loss, are assumed to follow when liver disease progresses.

Severe Health Condition Awards (SHC) provide for increased care and financial loss awards for categories of circumstances where the assumptions on which core awards are calculated are likely to be insufficient to compensate for the impacts of infections. It is known that some people with Hepatitis C, Hepatitis B, and HIV experience neurocognitive impairments and behavioural disorders and an SHC provides for increased care awards (based on a social services needs assessment) and financial loss (up to 100%). For the Severe Psychiatric Conditions award, the previous Expert Group advised that when there was a diagnosis of a mental illness of such severity, that they required specialist psychiatric treatment for a prolonged period, and where the impact prevented them from working, then the supplementary Severe Health Condition Award should be based on 100% financial loss. This is considered in more detail below.

Principles of Evidence

The TEG has applied the principles of evidence that were identified in its predecessor’s work in order to promote consistency. These principles are:

• Accessibility: Accessible to claimants (and assessors) means that only information that is reasonably expected to be available if requested should be sought to establish eligibility.
• Assessability: Evidence must be suitable for use by the Infected Blood Compensation Authority (IBCA) to determine eligibility or entitlement without significant further inquiry or assessment in line with the principles of a tariff based scheme.
• Verifiability: Evidence must be verifiable to maintain the integrity of the scheme.
• Proportionality: No more intrusion into people’s privacy should be sought than is required to ensure that they receive the compensation to which they are entitled.

We consider that these principles were broadly sound in the light of the feedback that we received. We heard often from the community representatives that evidence is not consistently available. For example; it might be possible to find evidence in medical records of psychological assessments, care needs, and impacts on people’s ability to work but it cannot be assumed that it is there. Critically we heard, services such as psychological support were often not historically available, not easy to access, and not always found to be helpful. These observations reinforced the significance of the principle of accessibility. 

Some felt all evidence should be pursued. Others drew attention to the inequity that would be experienced by those who could not produce it. We were also reminded that the production of evidence could itself cause trauma. We have reflected on these points from the standpoint of the principle of proportionality.

Recommendation 4a: Recognition of the impacts of interferon treatment

Background

Most infected people who have been treated with interferon are currently eligible for compensation in line with the Level 2 Hepatitis (chronic) severity band. 

The Level 2 band was designed to provide compensation for the conditions and other effects on their life that people with a chronic Hepatitis infection would commonly experience, including treatment with interferon. The calculation of injury awards for chronic hepatitis was made by reference to judicial guidelines relating to circumstances that included chronic fatigue and cases from earlier litigation in relation to receipt of infected blood that had involved interferon treatment. 

Care awards for those at Level 2 were assessed on the basis that most people with chronic hepatitis would need ten years of domestic support. While actual needs will vary for individuals, the scheme is based on providing an annual sum calculated to fund an average of six hours support per week to help with heavier domestic tasks, attending medical appointments, and household maintenance. No evidence is required that this support was needed or paid for. 

Level 2 financial loss awards are calculated on the assumption that a person’s ability to work would be reduced by 40% (this equates to only being able to work part-time for three days per week, for example, or the equivalent in reduced daily hours).

It is known that some people suffer severe medical complications from interferon treatment, including autoimmune diseases. These will result in a significantly greater loss of earning capacity than recognised in the core awards and the scheme assumes that this would amount to a 70% loss. A number of the ‘severe health conditions’ recognised in the scheme are specifically linked to the consequences of interferon treatment.

Initial Advice

The Inquiry’s Additional Report suggested that the Level 2 severity band does not provide enough compensation to fully recognise the impact that treatment with interferon had on infected people. The Inquiry recommended that people infected with Hepatitis B or C who have received interferon treatment should be entitled to higher compensation under the core route, and that it would be a choice for the Minister to decide whether to uplift to Level 3 severity band or to create a new Level 2B band.

In response, the Government proposed to introduce a new Level 2B severity band that would give more compensation to recognise the impact of interferon treatment. The Level 2B band would provide core awards higher than Level 2 Hepatitis (Chronic) and lower than Level 3 (Cirrhosis). The Government worked with advice from the TEG to develop a proposal that was outlined in the public consultation that ran between 30 October 2025 and 22 January 2026.

The TEG supported the Government to develop the Level 2B band proposal by providing advice in two primary areas:

The impacts of interferon

• Short-term impacts (lasting less than 2 years): The TEG looked at evidence of the short-term side-effects of interferon treatment. This included guidance from the National Institute for Health and Care Excellence (NICE), which suggests that many, but not all, people find interferon alfa therapy very hard to tolerate. The guidance notes that a large number of patients experience flu-like symptoms after each injection, and up to half may suffer from chronic fatigue, headaches, fever, muscle aches, insomnia, and nausea. It also notes that around a quarter of patients report hair loss, joint pain, chills, irritability, itching, depression, skin rashes, and a decreased appetite, and that such side effects frequently lead to patients stopping or not adhering to treatment. While depression is a known risk of interferon treatment, studies suggest these symptoms typically resolve quickly once treatment ends.
• Long-term impacts (lasting more than 2 years): The TEG considered the available evidence on long term side-effects of interferon treatment. It noted evidence from infected people to the Inquiry of their experience of significant longer term impacts. It also noted that the Infected Blood Inquiry’s Hepatitis Expert Group had found no predictable long-term side effects of interferon in the available clinical trial follow up data. The TEG recognised that this clinical trial data had limitations. It anticipated that the Government’s public consultation would gather experiential data to shape its final proposal.

Award level and values

• Level 2B: The TEG advised that the Level 2B proposal should provide compensation for the short-term side effects of interferon treatment, with any long-term effects better addressed through the proposed supplementary Severe Health Condition awards. 
• Duration: The TEG advised basing the award on an average treatment period of 48 weeks. This advice was based on relevant NICE guidance and the Infected Blood Inquiry’s Hepatitis Expert Group report. Although people undergo interferon treatment for different lengths of time, setting a 48-week period was advised to minimise the evidentiary burden on claimants. In some cases, this means people will receive compensation for 48 weeks even if their actual treatment was shorter. The TEG advised that short trials of treatment, less than 12 weeks, should not create eligibility for a Level 2B awards as the cessation of treatment would have meant that effects were short-lived. However, it noted that this might be difficult to demonstrate and suggested that these evidential issues might be explored via the Government’s consultation.
• Award levels: The TEG provided advice on the appropriate award values for a Level 2B severity band, considering the impact of treatment and associated side effects.
  • Care Awards. It considered that during the year in which treatment was received the care award should reflect the likely need of 16.5 care hours per week (described as ‘low care’ in the compensation scheme). It considered that in years after treatment with interferon had finished that the provision of ‘domestic support and ad hoc care’ that was already made for those with chronic hepatitis was likely to be a reasonable level for the care award.
  • Financial Loss. The TEG considered that during the year of treatment and for the year following those who received interferon treatment would have considerably greater loss of earning capacity than people with chronic hepatitis who did not receive such treatment. The TEG suggested that for this two year period financial loss should be aligned to that of Level 3 (Cirrhosis) at 80%. It considered that after this two year period, the longer term impacts of interferon treatment were likely to be reduced and that a 40% loss of earning capacity, as recognised in the Level 2 Hepatitis (Chronic), was a reasonable recognition of the likely financial loss.

Government proposal

Taking into account TEG advice, the Government’s proposal for Level 2B, was set out in the consultation. This was that all infected individuals who have received treatment with interferon would qualify for the Level 2B infection severity band as part of their core compensation award.

• Injury award: A £10,000 uplift on the Level 2 band, bringing the total value of the core route injury award for interferon recipients to £70,000.
• Financial Loss award: Compensation for a higher level of financial loss for two years (the year of treatment and the following recovery year). It assumes earning capacity was reduced to 20% during this time. The total value of the award would be £23,726 per annum (80% of UK median net salary plus 5%) for those two years.
• Care award: Provides one additional year of low-level care (16.5 hours per week) compared to the Level 2 band. People treated with interferon would automatically qualify for this uplifted care award without needing to provide further evidence.

Questions identified by the TEG for the roundtable

In the background paper circulated before the roundtable, the TEG identified a number of issues that it wanted to understand better. 

• 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?
• Is the 48-week standardised treatment period an appropriate rule to minimise the burden of proof?
• What evidence of interferon treatment is likely to be available in order to ensure that people will be able to demonstrate eligibility?
• Was it common for people to need to purchase care for more than 16.5 hours per week during their course of treatment? 
• 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?
• Would supplementary awards for people with long-term psychological harm better recognise those with permanent side effects than a specific interferon-related award? This could remove the need to consider whether the harm was caused by interferon treatment or by the infection.

Summary of feedback from representatives at the roundtable

Representatives provided testimony on the physical, mental, and social impacts of interferon treatment. They reminded us that it was difficult for those who have experienced interferon treatment to think about and describe the difficult experiences they lived through. Key points raised by community representatives included:

• Interferon was gruelling, a “systemic toxin” whose side effects could be compared to “torture” and often caused people to feel worse than the original Hepatitis C infection. Side effects included uncontrollable rage, profound “brain fog,” severe depression, and physical symptoms like hair loss and exhaustion that rendered people incapacitated for years. 
• It is wrong to assume that side effects typically resolve quickly after treatment ends; instead, lived experience suggests many have never fully recovered and have suffered lifelong psychological and physiological changes even after achieving a Sustained Virological Response.
• Interferon treatment caused a significant strain on family life, including the breakdown of relationships and the trauma experienced by family members who had to act as primary carers.
• Participants argued that the current proposal for Level 2B rather than Level 3 remains too “liver-centric” and fails to acknowledge the multi-organ damage and total systemic collapse caused by the treatment.

Summary of written feedback received

Thirty six key representative organisations and charities in the infected blood community were invited to provide a written response to the questions in the background paper and eight responses were received. These came from the Hepatitis B Trust, Haemophilia Scotland, Mono HCV Haemophiliacs, Former Treloar’s Pupils, Misdiagnosed Victims

UK, Thalassaemia Society, and the Hepatitis C Trust. A summary of responses has been published on GOV.UK.

Most responses said that the Level 2B proposal would fail to recognise the severity of harm, particularly in respect of the long-term effects of interferon. It was suggested that an automatic move to Level 3 would ensure the process is simpler, fairer, and reflect the true impact of the treatment. We also heard that some people had multiple rounds of interferon treatment that should be recognised. One response raised a point about the implications of seeing the interferon award in terms of severity banding, noting that ‘Members of our group who are in higher banding levels will not receive compensation, this is unfair and unjust.’

Some respondents said that care needs for those receiving interferon exceed 16.5 hours per week. Some 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. Many told us that reductions in earning capacity continued after the two year period.

Feedback from the Government’s consultation

The TEG received a summary of relevant responses to the Government’s consultation. This was at an early stage of the review of the consultation responses and was indicative of the emerging themes, not a definitive picture. The Government’s response to the consultation contains the full analysis. 

Short-term side effects (within two years of treatment)

The consultation asked what short-term side effects had not been covered by the proposal, and encouraged respondents to explain how those side effects affected their ability to work and their care needs. Respondents described a range of impacts resulting from the presence of short-term side effects, including: reduced ability to work/study; reduced ability to complete day-to-day activities; relationship difficulties; and psychological damage / trauma. 

Many respondents noted that side effects lasted longer than the recognised two-year period. Some respondents suggested that their care needs and/or financial loss was greater than the Level 2B proposal accounts for, though quantifiable figures were rarely given. 

Longer-term side effects (more than two years after treatment)

The consultation also asked what long-term side effects had not been covered by the Severe Health Condition award, encouraging respondents to explain how those side effects affected their ability to work and their care needs over a given duration. Responses that detailed the impact of long-term side effects included: reduced ability to work/study; reduced ability to complete day-to-day activities; relationship difficulties; and, psychological damage / trauma..

Very few responses quantified the levels of care and financial loss associated with long-term side effects of interferon treatment. Some responses described higher care and financial loss linked to multiple rounds of treatment or treatment over continuous years.

Conclusions and suggestions

The TEG reviewed the consultation responses, reflected on what we heard at the roundtable, and considered written submissions received after the circulation of the background paper. Individual experiences of symptoms vary greatly. While a tariff-based scheme cannot fully mirror every person’s specific experience, the TEG considers that the 80% financial loss assumption for Level 2B reflects the experience of the majority during treatment and shortly afterwards. 

In relation to longer-term side effects, the TEG notes the difficulty in categorising long-term effects that fall between chronic awards and the supplementary route for autoimmune conditions. Some of the long-term impacts described are already recognised in the core awards, which are set at a level which reflects significant physical and psychological injury. Where reported side effects were not already covered in the core awards, the Group found insufficient evidence in clinical literature to classify them as common (other than in relation to the existing severe health condition supplementary awards). As the TEG cannot say that it is likely that all those treated with interferon would have experienced these impacts beyond two years, it does not support including them in core awards. 

It is clear, however, that a significant number of people do experience longer term impacts and the compensation scheme needs to recognise this. We suggest that these should be recognised on the basis of evidence of impact, using the proposed Special Category Mechanism (SCM) supplementary award. This would recognise the impacts irrespective of whether they were caused by interferon treatment or the infections.

We have concluded from this that the Level 2B proposal on which the Government consulted, developed in part from our initial advice, appropriately reflected the short term impacts (lasting no more than two years) of interferon treatment. Our advice is that this proposal should be implemented, subject to clarification that those who underwent more than one period of interferon treatment should be eligible for the uplifted award in relation to each such course of treatment. This might involve the prolongation of the award to cover three rather than two years, where there were two separate courses of treatment within the two year period. More commonly, this would be two separate level 2B awards, where there was a gap between the courses of treatment.

We also heard of significant longer-term side effects (lasting beyond two years), which would not be recognised by the current proposal. In our initial considerations we noted that the Inquiry’s expert group had concluded that the available clinical evidence suggested that the impacts attributable to interferon did not continue for such a long period. The TEG has noted that this evidence is weak. Nevertheless, the balance of evidence is that we cannot say that most people who received interferon are likely to have suffered side effects lasting beyond two years. We therefore do not advise that the proposal on interferon should be revised, either to extend the period of the Level 2B Award or to make receipt of interferon an eligibility criterion for Level 3.

Our advice is that this addresses the range of impacts of interferon because those people who suffered debilitating symptoms for more than two years that prevent them from working would be eligible for the Severe Health Condition Award based on long-term severe disability (the SCM award). Taking the lead from a comment from one of the roundtable participants, we advise that the long-term disabilities suffered should be the focus, not whether those disabilities were caused by interferon or by the wrongful infection. Even if the attribution to interferon is uncertain, the harm experienced is not. This would mean that those suffering longer-term impacts should apply for a severe health condition supplementary award based on the disabling impacts.

TEG advice:

• A Level 2B Interferon Award is more appropriate than a Level 3 award, provided that multiple courses of treatment are recognised. 

• Those with longer term impacts should have these recognised under a severe health condition award based on long-term disability.

Recommendation 4b Recognition of Special Category Mechanism (SCM)

Background

The Inquiry’s Additional report concluded the Scheme took inadequate account of the way in which each support scheme had developed intermediary levels of award between chronic infections and liver cirrhosis (and other very significant disease markers) described in the England Infected Blood Support Scheme (EIBSS) as the ‘special category mechanism’ (SCM), in the Scottish Infected Blood Support Scheme (SIBSS) as ‘severely affected’, in the Wales Infected Blood Support Scheme (WIBSS) as Stage 1 Plus, and in the Infected Blood Payment Scheme for Northern Ireland (IBPS NI) as Stage 1 Enhanced Payments. The SCMs recognised individuals with chronic Hepatitis C who have experienced a more significant impact on their ability to perform daily duties due to their infection or treatment than is generally the case. These could arise in respect of mental health impacts, chronic fatigue or autoimmune conditions. The Inquiry’s Additional Report identified this gap and recommended that it needed to be closed. In particular, it drew attention to the need to ensure that eligibility for the supplementary route covered all those Hepatitis C associated extra hepatic disorders resulting in long term severe disability that were recognised in the SCM processes.

Initial Advice

In the first phase of its work, leading to initial advice to Government on the IBI Additional Report and informing the Government’s consideration of consultation proposals, the TEG provided the following advice to Government on SCM award assessment criteria:

Those who have already been assessed by existing support schemes should qualify for a new category of Severe Health Condition (SHC) from the date of any such assessment. When there has been no such assessment, it is likely that this approach can only be adopted in respect of living beneficiaries. This is in contrast to the existing SHC categories where it is likely that the records relating to deceased victims will contain evidence including the relevant clinical markers, enabling eligibility to be backdated to the time those markers were present.

Living people who are not registered with an IBSS (such as those with Hepatitis B) need to be able to apply for a Severe Health Condition award from IBCA. We proposed that the fairest way to do this is to replicate the existing SCM assessment process. We observed that

the four different Support Schemes had similar but not identical assessment criteria. As it is important that the Scheme treats every applicant in the same way, we advised that the Scheme should use the assessment process used by the England Infected Blood Support Scheme (EIBSS). This was because most IBSS-registered applicants (approximately 80%) will have been assessed using the EIBSS criteria.

The EIBSS assessment process for SCM involved 2-3 medical assessors reviewing evidence. This evidence was presented by the infected person themselves and the UK-registered health professionals that treat them. When the medical assessors reviewed this evidence, they looked to see whether a person’s infection (or treatment) had caused a substantial and long-term effect on their ability to carry out daily activities and work.

Following initial advice from the TEG, the Government proposed, as part of its public consultation, that the following groups should be eligible for a Severe Health Condition Award to recognise SCM impacts:

• Living infected people or the estates of infected people who are receiving SCM or equivalent payments (or received them before they died) would be automatically eligible for this award.
• Living infected people who are not currently receiving SCM or equivalent payments from an IBSS would be able to apply to be assessed by IBCA against the EIBSS assessment criteria and if they meet them, will receive the award.

The Government consulted on this proposal and on how eligibility should be established for people who are not registered with an IBSS, but who experience the same effect on their day-to-day life, for the same reasons, so that they too become eligible for an award.

Questions for the SCM Roundtables 

In the second phase of its work, the TEG identified a number of matters on which it would find the views of roundtable participants helpful and set them out in the background paper that was sent out in advance (and which was published on our webpage)

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

Summary of feedback from representatives at the roundtables

There was a consensus among representatives that all infected people currently receiving SCM (or equivalent payments in devolved nations) should be automatically ‘passported’ into the compensation scheme without requiring reassessment by IBCA. In support of this view, representatives at the first roundtable reported that the current SCM application process (under EIBSS) was rigorous and required consultant sign-off and, for that reason, requiring people to ‘re-qualify’ for support they already receive would be insensitive and re-traumatising. Representatives at the second roundtable noted the difficulties in trusting those involved in the design of the scheme, and the pain caused for victims of infected blood who feel they must repeatedly prove their suffering. Because of this, representatives felt that any further medical assessment in order to access appropriate compensation would be traumatising, and that the scheme must be built on a foundation of trust. 

Representatives at the second roundtable also noted that the England Infected Blood Support Scheme (EIBSS) is not always viewed as the ‘gold standard’ model for the Compensation Scheme, and explained that the devolved schemes have developed different approaches. The Scottish and Welsh models of self-declaration were cited as particularly effective, relying on trust and reducing the evidentiary burden on applicants.

There was a consensus that whatever criteria the support schemes would have applied should be applied to new applicants to ensure equality. People infected with Hepatitis B should be treated equally to those with Hepatitis C regarding eligibility for SCM-equivalent awards. There is no clinical or moral rationale for excluding people with Hepatitis B from an SCM-style award, and they should be placed on an equal platform with those who have Hepatitis C (see further below for additional points). For living people not currently registered with a support scheme, evidence could be sourced from medical centres (e.g Haemophilia centres), though representatives noted that some records may be inaccurate.

Representatives noted the historical difficulties in accessing specialist psychological care. It was noted that specialist support was often not available; some support was provided by clinical staff in haemophilia centres rather than clinical psychologists or psychiatrists. Concerns were raised regarding the scheme’s requirement for evidence from consultant psychiatrists, which was viewed as unfair and unrealistic. Participants explained that this was because many victims historically lacked access to such specialists or did not feel they could seek support due to the stigma surrounding their infection. Consequently, representatives flagged that applicants may not have clinical records from mental health specialists. Similarly, they noted that haemophilia clinicians and units were trusted sources and that their records and knowledge of patients should therefore be accepted as evidence. 

Representatives also suggested that the Scheme should accept evidence from other government assessment processes, such as Department for Work and Pensions (DWP) assessments for Personal Independence Payment (PIP) or Disability Living Allowance (DLA), as a means for applicants to show care needs and financial loss.

Representatives fed back their views that estates of deceased infected people should be eligible for SCM-equivalent awards and that to do otherwise would be unjust. They acknowledged the difficulty of obtaining medical evidence for those who died many years ago, and suggested that witness testimony from family members, or the fact of the death itself, should be considered sufficient evidence to determine eligibility for SCM.

Concerns were raised regarding the start dates for SCM-related awards. It was argued that using an “arbitrary” date (such as 2017) or the date of assessment did not reflect the reality of when symptoms began. Suggestions for appropriate start dates included: the date of symptom onset, the date a health professional recognised the condition, the date an original application was made (even if initially rejected). It was highlighted that symptoms often existed for many years prior to the introduction of the SCM payment category.

Concern was also raised about the percentage of financial loss in the proposal for SCM (70% before effective treatment became available, and 60% thereafter). One participant said this should be assumed at 80% with a 10% uplift where a recognised severe health condition exists from the date of diagnosis. Participants raised a concern about the reduction in financial loss payments for Hepatitis C based on the introduction of ‘effective treatment’ (Direct Acting Antivirals) at a particular date. Specifically, it was argued that this deduction was unfair to those who had not received effective treatment or who had been treated with interferon, which has significant side effects. Many people underwent interferon treatment, often on multiple occasions, and did not go on to receive newer therapies. Comparisons were drawn with HIV awards, which do not carry a similar reduction based on treatment availability, the rationale for this difference was questioned.

Summary of written feedback received

Thirty six key representative organisations and charities in the infected blood community were invited to provide a written response to the questions in the background paper. Seven responses were received; UK Thalassaemia Society, Families of Deceased Infected Blood Victims UK, Mono-HCV Haemophiliacs, Contaminated Blood Women, an independent longstanding campaigner, Haemophilia Wales, and Haemophilia Scotland. 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, which the TEG reviewed to ensure the themes were accurately summarised. A summary of responses has been published on GOV.UK.

A systematic summary of the themes, arranged by the questions identified in the background paper, was collated by the Cabinet Office. This led us to re-examine three issues and in this section of our report, we draw attention to some particular themes or responses that we have focused on in reaching our conclusions.

Background to the SCM Categories

We heard concerns that the summary of the background to the SCM categories that had been explained to us in our meeting with EIBSS assessors was misleading in its suggestion that interferon treatment was the primary driver for the creation of the new categories. This was neatly explained by the written submission from Haemophilia Scotland as follows:

The intent was to provide additional support to those with Hepatitis C stage 1 (i.e. those with chronic infection) who considered their infection or treatment had a substantial and long-term adverse impact on their ability to carry out routine daily activities. The Review introduced a higher support payment level for these individuals bringing them up to disease stage 2 (cirrhosis).

Taking this into account, we have explored the background to the SCM categories. Our review suggests that comparing the role of SCM in the support schemes with the compensation scheme is not straightforward. 

Under the compensation scheme, it is assumed that those with chronic hepatitis had a significant loss of earning capacity leading to financial loss, fixed at a 40% loss of earning power without the need for any specific evidence of this. When the SCM or equivalents were introduced there were no substantial annual payments for those with chronic hepatitis infections. 

In England in 2016/17 an annual payment was introduced for those with chronic hepatitis C (stage 1) for the first time. After the consultation in the introduction of SCM this was set at £4,500 for 2018/19. At that time, those with advanced hepatitis C (stage 2) received an annual payment of £18,500. The introduction of SCM aligned those on SCM to the level 2 payment. A rough comparison between these levels and the approach taken in the compensation scheme would be to consider the Stage 1 payments in comparison to chronic hepatitis award (Level 2, 40% financial loss) and Stage 2 in relation to the cirrhosis (Level 3, 80% financial loss), noting that the compensation scheme also has a Level 4 award (100% financial loss). The compensation scheme therefore provides for financial loss for those with chronic hepatitis at 50% of the financial loss of those with cirrhosis compared with 24.3% of the amount as in the English support scheme after the changes introduced. 

Prior to the reforms in Scotland, there were no annual payments to those with chronic Hepatitis C infection, only a lump sum. Under the changes introduced, those with no noticeable impact received £11,453 per year, those ‘moderately affected’ received £22,905 per year, and those in the ‘severely affected’ category received £34,736 per year. The severely affected aligned payments to those with stage 2 Hepatitis C, which were intended to reflect Scottish full-time gross median income. This can therefore be approximately equated with no noticeable impact 33% of average earnings, moderately affected 66% of average earnings, severely affected 100% of average earnings. This is not directly comparable to the compensation scheme as there was no separate care award. In addition, it was explicitly stated that the levels were not considered to be compensation but support. 

The criteria for the English SCM (outside of specified health conditions), was summarised in the consultation document that preceded its introduction as recognising the needs of people who experience a ‘substantial and long-term adverse impact on your ability to carry out daily activities’. In Scotland, the Goldberg Clinical Review proposed self-declaration ‘that their (or their spouse’s / partner’s) hepatitis C had seriously affected and continued to affect their life’ and that ‘a definition of ‘serious’ would be provided to assist the decision making; this definition would be to the satisfaction of the Clinical Review Group.’ 

The Review Group report does not contain this definition but the guidance for applicants illustrated it as follows

• You are unable to work due to the impact of mental health problems.
• You are only able to work part-time due to mental health problems.
• You had to leave a previous better job, job role or career due to mental health problems and this has had a permanent impact on your career. This could also include cases where your previous earnings have reduced as a result of your mental health problems.
• Your mental health problems have directly resulted in the breakdown of your marriage or other serious relationship and this is still having a significant effect on your life. This is likely to apply to you if it wasn’t your choice to end the relationship, but your partner ended the relationship because of the impact hepatitis C had on you and them.
• Your mental health problems make it very difficult for you to leave your home or socialise with others – this could be all the time or it may be that this happens to you quite often (at least a number of times in the past couple of years).
• You are unable to work full-time or carry out day to day activities due to physical health impacts caused by hepatitis C.

It is clear from these illustrations that it is not easy to infer consequential financial loss as the illustrations place those unable to work in the same category as those working part time. We cannot, therefore, say that all those who were ‘severely affected’ within these definitions suffered greater financial loss than is already provided for in the core awards. The severely affected category could include people who were able to work the equivalent of 60% of normal hours. The core awards for chronic hepatitis already assume this degree of impact without the need for specific evidence. It could also include people who were not able to work at all and therefore suffering greater financial loss than provided in the core award.

These observations are significant for our advice on new applications, but it would be wrong to re-open past assessments. Those assessed under the support schemes as eligible for enhanced payments should automatically receive the proposed SCM supplementary award. Any other approach would risk the retraumatisation that we were told by many participants in our roundtables have resulted from inappropriate and disproportionate further enquiries. 

Structural Disadvantage

While there was widespread support for the Government’s proposal to make all those registered with support schemes as SCM beneficiaries eligible for the long-term disability SHC, there were also concerns from one representation that ‘using historic SCM registration retrospectively as a gateway to compensation risks creating structural disadvantage’. 

This language was used in relation to the deceased, but similar concerns arise in relation to those not previously within the scope of the support schemes at all (most clearly people with Hepatitis B). A related point was made about the 2017 start date, arguing it discriminates against those who died before the SCM mechanism was established. 

There were also concerns that the scheme treated physical and psychological harm differently, including by recognising physical harm retrospectively but not psychological harm. This point was specifically made in relation to the TEG’s initial advice that new SCM evaluations could only be made for living applicants. However, such a concern was implicit in other observations that we received. 

Self-Declaration

A number of responses suggested using EIBSS forms and processes to assess eligibility for new applicants for the SCM supplementary award, as proposed by the Government consultation. However, we also heard concerns from those familiar with the Scottish, Northern Irish and Welsh schemes that this should not be regarded as the ‘gold standard’. Similar observations had been made in the Inquiry’s Additional Report. One respondent suggested that concerns regarding fraud could be managed by “limited verification of a percentage of claims,” rather than universal clinical assessment.

The TEG has concluded that the basis for new applications for SCM supplementary awards should not be a clinical assessment but self-declaration of impacts on earning capacity, supported by evidence from the applicant of the reduction in their ability to work. This could be direct, in the form of comparisons of prior and subsequent work situations. It could also be indirect, relating to difficulties in undertaking daily activities. No specific diagnoses should be required, rather evidence of long-term disability. The evidence put forward would need to be assessed by IBCA to see whether it shows that, on the balance of probabilities, the applicant’s long-term disability prevented them working for more than three days a week (or equivalent). Where this is the case, then the core award would be insufficient.

Estates Eligibility for SCM Supplementary Awards

Following the responses to the consultation, the Minister for the Cabinet Office made an additional request to the TEG as follows. This was set out in an open letter that was published on our webpage.

The proposal as it stands would not be accessible to applications on behalf of the estates of deceased people, as SCM criteria were originally designed for clinicians to assess the current impacts of infection and treatment on living individuals…. I would be grateful if the TEG could hold a further roundtable to examine whether it is feasible to extend the SCM award for the deceased so that your final advice can inform the Government’s decision on this matter.

The TEG therefore held a roundtable on 4 March seeking the community’s views on whether it is possible to design a process that is both assessable and verifiable for estates in relation to people who were not in receipt of SCM payments through the support schemes at the time of death. Those who have been previously assessed as eligible for SCM would be compensated under the SCM supplementary award. 

The background paper suggested that for this to work, IBCA would need to be able to look at clear evidence and make a judgement on whether a deceased person would have been eligible for the award and, if so, when they would first have been eligible for it. The background paper for the Roundtable identified issues on the types of evidence that would be likely to be available to show that someone would have qualified under the EIBSS eligibility criteria for SCM even though they had not been assessed by a support scheme, and how easy would it be for people bringing claims on behalf of estates to provide that evidence.

Three representatives attended the roundtable. They expressed profound anger and distress regarding the exclusion of infected and affected people from the initial design of the compensation scheme. This was described as an “abomination” and a form of malfeasance, leading to a significant collapse in trust. The current proposal to limit new SCM applications to living individuals was criticised as creating a “two-tier”, discriminatory system. The process was described as “torturous,” forcing bereaved families to relive trauma and “gaslighting” by repeatedly proving the suffering of their loved ones.

The assumption that clear evidence for deceased individuals is unavailable was challenged . Participants suggested that records from the Alliance House Organisations (AHOs) and existing support schemes already contain evidence of significant liver damage and treatment history. Eligibility should be established using a pragmatic and proportionate approach, including: Department for Work and Pensions (DWP) records for DLA or PIP assessments, employment records related to retirement or loss of work, police and social work records, family letters and witness testimony from relatives who provided informal care. To establish the date of eligibility, it was suggested that “proxy dates” could be used such as the date disability benefits were awarded, the date work was lost, or the date a health professional first recognised a deterioration.

A number of specific points were made about the recognition of death and severe health impacts. Some argued that, for people who have died, the fact of death itself should be sufficient evidence for an SCM-equivalent award, particularly as diagnostic tests (like blood samples) are often not the priority during end-of-life care. The devastating and life-changing effects of interferon treatment, including attempted or death by suicide, were highlighted as readily available evidence of qualifying for an SCM award. Participants noted that 40 years ago, there was no access to talking therapies or modern mental health facilities, and many people were never formally diagnosed with PTSD or depression despite suffering “gruesome” outcomes.

The TEG discussed these points at its meeting on 5 March (no written responses were received after the roundtable). It noted that cases of significant liver damage, including where a person died as a result of the infection, would not fall within the SCM supplementary award but within the core award. These were available to estates. Where eligibility for severe health condition supplementary awards was based on clinical diagnoses, then these would be available to estates on behalf of the deceased person. Where a deceased person had been assessed by a support scheme as eligible for an enhanced or SCM payment, then this would automatically establish eligibility for the SCM supplementary award, which would be paid to estates. The TEG felt that the examples raised at the roundtable would not require a change to these provisions. They were already recognised in the compensation scheme, given the Government’s proposal that prior assessment by a support scheme for SCM automatically gave eligibility to the supplementary award, including for deceased persons.

The TEG was concerned that the types of evidence suggested at the roundtable that could be used for the deceased to qualify for SCM were problematic and uncertain. Introducing such evidence would risk retraumatising bereaved families with limited prospects of success. 

Concerns included that:

• Where death was not caused by the infection, it was unclear that this was a marker of its impact. Requiring people to prove a link between the infection and a death would risk retraumatising loved ones, especially in relation to suicide (one of the examples raised) where establishing causation is complex.
• In relation to the impacts of interferon, the TEG noted that the proposed award would be paid to estates on behalf of the deceased person. The conclusion the TEG had reached on longer-term impacts was that they could not be assumed to have been experienced by most people. As a result, interferon treatment was not to be regarded as a reliable marker for SCM. Instead evidence of long-term severe disability was needed. 
• The Group was concerned that Department for Work and Pensions (DWP) records (such as PIP or DLA) were an unreliable source of primary evidence for historical SCM claims due to standard record retention schedules (typically 24 months to 6 years). 
• Seeking new clinical evidence for SCM eligibility from deceased estates would create inequity, as many historical medical records have been lost or destroyed, as well as additional intrusion. As the evidence being sought was of impact on the ability to work greater than 40% it was unclear how this could be reliably evidenced on the basis of clinical records.

In the light of these considerations, the TEG remains of the view that new applications for SCM supplementary awards should be limited to living infected. Most core and supplementary awards were available to the estates of the deceased. The number of new applications for SCM from estates was unknown but the TEG did not think that there was evidence before it of a significant gap in the scheme if the Government’s proposals were implemented.

Further Inquiries outside of the Roundtables

As a result of points raised in the roundtables, the TEG has looked further at the origins and administration of the SCM processes in the different national schemes (see above). Information was sought from the administrators of the support schemes on the following issues that the TEG considered might be relevant:

• What ‘psychological diagnoses’ have been considered, what patterns of acceptance have there been of a link with hepatitis infection (referenced in para 2.7 of the EIBSS assessment guidance)?
• What evidence (including but not limited to documentation) has been available of ‘attempts at treatment, and assessment of long-term prognosis’ and ‘engagement’ by applicants with those assessments and treatment (referenced in para 2.8 of the EIBSS assessment guidance)?
• Which professionals other than qualified psychologists or psychiatrists have been able to provide assessments (referenced in para 2.8 of the EIBSS assessment guidance)?
• What proportion of SCM beneficiaries are in employment and whether it is full or part time?
• Have any SCM beneficiaries reverted to standard payments after their health has improved?

However, this information is not readily available and the TEG has had to give advice without being able to consider these issues.

Conclusions and suggestions

The TEG supports the Government’s proposal that people who were receiving payment under the Special Category Mechanism (England), Severely Affected (Scotland), Stage 1 Plus (Wales), Enhanced Payments (Northern Ireland) should be passported into eligibility for a severe health condition SHC based on severe long-term disability. This is consistent with the advice of the previous expert group and was strongly supported by participants in our roundtables.

In our initial advice, we suggested that financial loss for this SHC should be set at 70% reduction in earnings for years when treatments had limited effects and 60% when they improved. We did not receive any suggestions on altering these amounts, although the point has been made a number of times that the improvements in available treatments often did not result in better experiences in practice. In the absence of alternative proposals, we advise that the financial loss should be set as we initially advised and as the Government proposed in the consultation.

We heard that care needs varied widely and were sometimes greater than provided for in the scheme. However, we have not heard of a better proposal for fixing care awards in a way that reflects the likely experiences of those involved. We therefore confirm our initial advice that care awards for this category of severe health condition should cover 6 hours per week domestic support and ad hoc care.

The Government’s proposal, based on the TEG’s advice, was that eligibility for the long-term disability severe health condition should follow the EIBSS process. We heard strong views from roundtable participants from Scotland, Wales, and Northern Ireland that self-declaration of long-term disability was to be preferred to an assessment process. We note that the EIBSS assessors rejected a significant proportion of applications for SCM. We infer from this that there is a potential mismatch between victims’ assessment about the causal connection between their symptoms and medical evaluations of that issue. We think it would be wrong to conclude that they did not experience those symptoms.

The key question that needs to be determined for eligibility for the SCM equivalent SHC is not the existence of symptoms but the financial loss that is likely to result from them. When the SCM was introduced, the difference in support for those with chronic hepatitis and those with cirrhosis was far greater than it is in the compensation scheme. SCM was introduced to recognise impacts that were not covered by the lower levels of support. In the compensation scheme, Core Awards are designed to cover a wider range of impacts than were recognised by the support schemes prior to SCM. Core awards also assume that everyone will have experienced greater harm than the lower award levels in the compensation schemes reflect, and to which SCM provided an uplift. In relation to financial loss the core awards assume that people with chronic hepatitis will have their ability to work reduced by 40%. The key difference between the Level 2 core award and the new SCM is whether the impact of infection or treatment has impacted people’s ability to earn to a greater degree. It is therefore a loss of earning capacity beyond 40% that needs to be identified. Some assessment evidence will be required for this.

TEG Advice:

• All those assessed as eligible for SCM or its equivalents under the support schemes should receive the supplementary SCM award from the date of assessment, including the estates of those now deceased but who had been assessed while they were alive.
• New applications for the supplementary awards from those with chronic hepatitis should be limited to living persons who can put forward evidence of impacts on their ability to work in excess of the 40% reduction already assumed in the core awards
  • Eligibility for increased financial loss awards should be based on self-declaration of impacts on earning capacity, supported by evidence of previous and current earning capacity. That would be assessed by IBCA to confirm that there has been a loss of earning capacity of more than 40% as provided for in the core award.
  • There will be people who are not earning and so such comparisons will not be available. For these cases, eligibility for increased financial loss could also be based on self-declaration of inability to carry out daily tasks such as leaving home, using public transport, shopping for essentials, walking more than 50 metres, climbing stairs, lifting objects from the ground or a work surface in the kitchen, cooking. People would be invited to explain these impacts and provide supporting evidence, which might come from sources such as a statement from a health professional, social services assessment, benefits records.
• No change is advised to the Government’s proposals on 70% financial loss for the SCM equivalent SHC, noting that there is a separate route whereby exceptional financial loss can be recognised.
• No clear basis for altering care awards has been established, so that no change is advised by the TEG to the proposed care award for those eligible for the SCM TEG. 

Recommendation 5a Severe psychological harm

Background

The Scheme acknowledges in the core awards that everyone will have suffered psychological harm alongside the physical impacts of infection. Therefore the scheme provides compensation for this as part of all core awards, with no separate or specific evidence of psychological and psychiatric harm required. This is to acknowledge clearly that everyone will have suffered this category of harm. There is, therefore, no requirement to show that people have received psychiatric treatment or psychological therapy when people apply for the core awards. 

Compensation for financial loss is also automatic in the core award. For chronic hepatitis (Level 2) it is calculated on the assumption that people will experience a 40% loss of earning capacity (for example being able to work only for three days a week). No evidence is required to show that this is caused by the infection. The connection between the infection and lost income is inferred from the fact that we know that people experienced psychological and physical symptoms that impacted significantly on their everyday lives, including their ability to work. 

Severe Health Condition Awards provide for increased care and financial loss awards for categories of circumstances where the assumptions on which core awards are calculated are likely to be insufficient to compensate for the impacts of infections. The tariff-based approach that Sir Brian Langstaff’s reports on compensation proposed means that awards cannot be precisely tailored to individual circumstances but need to provide broad justice for most people. Some degree of categorisation is necessary for such a tariff-based scheme to work.

It is known that some people with Hepatitis C, Hepatitis B, and HIV experience neurocognitive impairments and behavioural disorders and, in relation to these, a SHC provides for increased care awards in defined cases of long-term severe neurocognitive impairment. This is based on a social services needs (or equivalent) assessment and evidence of financial loss (up to 100%).

For the separate Severe Psychiatric Conditions award, the previous Expert Group advised that where there was a diagnosis of a mental illness of such severity that they required specialist psychiatric treatment for a prolonged period, and where the impact prevented them from working, then the supplementary Severe Health Condition Award should be based on 100% financial loss. This loss is regarded by the scheme as permanent if the eligibility conditions are met. Even if a person’s mental health improves with treatment, a history of specialist psychiatric treatment can itself be stigmatising and impair employment prospects. 

The Inquiry’s recommendation was that,

The approach of the Infected Blood Psychology Service is adopted so that both a diagnosis made by a psychiatric professional and a formulation-based opinion of all qualified psychological and counselling professionals are accepted as sufficient evidence of severe psychological harm and that such evidence should qualify a person for a supplementary Severe Health Condition award without the additional need to demonstrate a period of consultant-led secondary mental health treatment or assessment/treatment as an inpatient.

Currently the need for consultant-led treatment distinguishes the level of severity assumed as part of the core and supplementary awards whereby greater severity assumes 100% inability to work. The psychiatric diagnoses that comprise part of the current eligibility criteria include depressive and anxiety disorders that can have a wide range of impacts. In itself, the diagnosis does not always serve as a proxy for impacts on the ability to work that lead to financial loss, which is the aspect of the compensation scheme addressed by this Severe Health Condition Award. For example, depression is a common mental disorder and will have been widely experienced. It is therefore recognised in the core award. Sometimes, however, the impact of depression is much more severe and can require prolonged specialist treatment or even hospital admission. In such cases, the financial loss will be greater than the core award recognises. Some criterion is needed that serves as a proxy for severity of the impacts in order to identify those whose financial loss will be greater than 40%.

Applying the principle that the Scheme should not require evidence that could not reasonably be expected to be available to applicants, the Scheme proposed receipt of specialist treatment because it was anticipated that this would be recorded in health records. 

A formulation-based opinion is the product of a process of discussion between a psychological professional and client in order to inform a treatment plan. It may include a description of symptoms and their potential severity, factors that have led to the condition and triggers as well as their impact on an individual’s life (e.g. ability to work). A formulation can include reference to diagnostic criteria if relevant and appropriate but is unlikely to provide a specific diagnosis. A formal assessment of symptoms using standardised tools indicating severity may also have been used. This might give some comparison with impacts on different populations. In itself, the fact that an assessment has taken place does not indicate any level of harm, although this may be apparent from the documentation of the process.

Initial Advice

In our letter to the Minister in October 2025, we stated that, having explored the issues with leaders from the Infected Blood Psychological Service, our initial advice was that the suggestion made by the Inquiry’s Additional Report to create a severe health condition based on a formulation-based opinion of a qualified psychological professional is not compatible with the structure of the compensation scheme. 

This was because formulation-based opinions are co-created with patients in order to guide therapeutic plans and are not a guide to the severity of psychological harm. To use formulation-based opinion would require, more often than not, a new expert assessment. Even with an agreed battery of psychometric measures, it is not clear that severity could be diagnosed retrospectively as these measures would assess current levels of impairment. This would be inconsistent with the principles on which the compensation scheme has been developed. It is also unclear how assessments would reliably correlate to people’s ability to earn or care for themselves, which are the categories of award that would be increased through a SHC.

Our initial advice was that it might be best to approach compensation of those whose mental health has been particularly severely impacted as part of the new SHC addressing the SCM category. We reached this view noting that the majority of SCM beneficiaries under EIBSS were eligible by reason of their mental health. We consider that this approach is more likely to lead to inclusion of all those that the Inquiry felt were wrongly excluded than would a separate category of severe psychological harm. 

We anticipated that we would revisit this conclusion in the light of the consultation responses and the TEG engagement with the community before giving final advice.

Summary of feedback from representatives at the roundtable

The TEG has previously received advice that an intense and time-consuming individual assessment process would be required if formulation based opinions were to be used in the compensation scheme. This would depart from the principles on which the tariff-based scheme is built. This informed our initial advice to the Government. The TEG wanted to understand from the roundtable participants how likely it is that people already have access to contemporaneous formulation based assessments that have described psychological impacts that were having similar impact on day to day function to the current diagnoses of psychiatric impacts beyond those recognised in the core awards.

No specific evidence of psychological harm is required in the core awards, as this is assumed to be associated with the infections. For a severe psychological harm award, however, there needs to be evidence that the level of psychological harm that has prevented the individual from actively participating in daily living, family life and regular employment, greater than that already recognised. If the use of a formulation-based opinion was to be integrated into the Severe Psychiatric Condition, there would also be an implication that treatment was unlikely to enable people to return to work.

Representatives provided statements regarding the impact of the infected blood scandal on mental health and the current structure of the compensation scheme. Key themes included:

• Attendees described the profound and lasting psychological damage of witnessing the illness and death of peers from a young age, particularly in institutional settings like Lord Mayor Treloar College.
• Representatives argued that, while the core route acknowledges psychological harm, it assumes a 40% loss of earning capacity which does not reflect the full reality for many victims whose ability to function was completely destroyed.
• Significant concern was raised regarding the requirement for the Severe Health Condition award for severe psychiatric disorders, for six months of consultant-led secondary mental health treatment or inpatient admission. Participants emphasised that:
  • Stigma prevented many from seeking formal psychiatric help.
  • Access to such services was historically unequal and inconsistent across the UK.
  • Many people were supported by counsellors or general clinical staff within haemophilia centres rather than psychiatrists.
• Representatives described the psychological toll of “hiding” infections for decades due to fear of ostracisation, and the trauma of discovering infections that had been documented in medical notes but not disclosed to the patient.
• Statements highlighted the “devastating” harm to women forced into difficult reproductive choices, or having choice effectively taken away from them in terminations, and the complex trauma experienced by children and parents within the infected blood community.

On barriers to evidence, some said using consultant-led treatment as a proxy for severity is fundamentally flawed. Absence of treatment records does not indicate an absence of severe harm; rather, it often reflects a lack of access or the impact of stigma. The institutions responsible for the original harm are often the ones holding the records required to prove that harm (the ‘gatekeepers’), which can be re-traumatising for applicants. It was suggested that the scheme should accept a wider range of evidence, including long-term use of antidepressants, GP records, and records from haemophilia centres

In relation to severity and functional impact, representatives argued that severity should be assessed by an individual’s functional inability to work or participate in daily life, rather than the level of medical intervention they received. The Technical Expert Group acknowledged the point that the severity of psychological harm does not always correlate with the severity of physical infection; for example, those with acute or chronic infections may still suffer extreme trauma and conditions such as PTSD. This was the basis of the SCM severe disability supplementary award.

One participant called for a process that includes individual assessments or from psychological professionals, to ensure those who did not enter the psychiatric system are not penalised. 

The TEG also noted that at the SCM Roundtable 2 concerns were raised regarding the scheme’s requirement for evidence from consultant psychiatrists, which was viewed as unfair and unrealistic. Participants explained that this was because many victims historically lacked access to such specialists. Such a concern would also apply to asking for a formulation-based opinion from a psychologist. There were also often significant barriers to using services - when they were available - due to mistrust and poor experiences. These points reinforced what we heard at the Roundtable on significant psychological harm.

Summary of written feedback received

Six responses were received. A summary of responses has been published on GOV.UK. All responses highlighted that it was either rare or very rare 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, and services were not offered. Many 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. Most responses emphasised 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 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. 

Government Consultation

The Government accepted the need for change in July 2025 and committed to consulting on the level of psychological harm and the evidence needed for eligibility. The proposal was that the Scheme provides compensation for a range of mental health issues:

1. Core Route: For psychological harm suffered by all infected people.
2. SCM Severe Health Condition Award: For those whose mental health issues require more compensation than the core route but do not meet the “severe psychiatric disorder” threshold.
3. Severe Psychiatric Disorder Severe Health Condition Award: For the most severe harms requiring intensive specialist treatment.

The consultation asked whether across these three different awards, the mental health effects of infection or treatment were fully covered by the compensation offered and if not, what other mental health issues needed to be considered. It also asked about pre-existing evidence that the Scheme could ask applicants to provide to demonstrate severe psychological harm, similar to the Severe Health Condition award for Severe Psychiatric Disorders. The Government’s response to the consultation contains the full analysis of responses. 

Conclusions and suggestions

The Infected Blood Inquiry recommended that the Government re-examine the evidence needed for a Severe Health Condition award for severe psychiatric disorders. Specifically, the Inquiry recommended that ‘formulation-based opinions’ should be accepted as evidence for severe psychological harm. It also expressed concern about the need to demonstrate a period of consultant-led secondary mental health treatment or assessment/treatment as an inpatient.

The Government’s response to the Inquiry’s Additional Report in July 2025, accepted the need for change and initiated a public consultation on the level of psychological harm that would make someone eligible for the Severe Health Condition award. It also consulted on what evidence should be required to demonstrate eligibility.

The Government’s proposal was that severe mental health issues not covered in the core route should be compensated by making people eligible for a Severe Health Condition award because they meet the criteria for SCM or equivalent payments. Participants at the TEG roundtables raised three strong points that broadly support this approach. First, it placed the emphasis on the impacts of psychological harm and not on any specific diagnoses or question about causation. Second, access to psychology professionals was unequal and an approach based on a professional opinion risked perpetuating inequity. Third, reliance on professional ‘gatekeeping’ to eligibility by requiring a formal opinion would mean that members of the health system that had caused harm would be seen to be controlling access to compensation. 

We have considered whether a ‘formulation-based opinion’ can provide a basis for the making of an SCM award. Where such an opinion contains information confirming that a person is unable to work or has to work part-time, then it could be used to support an application for the SCM award. However, we do not think that it should form part of the eligibility requirements because this would make access to a particular type of service a precondition for the award. As explained above, we suggest that people making new applications for the SCM supplementary award should be able to explain how their ability to work has been reduced more than recognised in the core awards for chronic hepatitis and support that narrative with whatever evidence they choose. The type of evidence should not be limited. This might include material found within a formulation-based opinion from a psychology professional, but it need not do so.

This proposal would mean that the Scheme provides compensation for a full range of mental health issues, depending on severity. Under the core route, compensation has been fixed on the basis that all infected people will have suffered significant psychological harm as a result of what has happened to them and that this will have reduced their ability to work.

The proposed changes to the Severe Health Condition award for SCM will be available to people whose mental health issues require more compensation than the core route provides because they have long-term severely disabling impacts. Eligibility will be based on evidence of those disabling impacts but without needing to specify a diagnosis or cause. It can include evidence of psychological impacts but will not need any specific professional diagnosis or treatment. 

The Severe Health Condition award for Severe Psychiatric Disorders provides for financial loss at 100% for those who have had long-term secondary care under the supervision of a consultant psychiatrist and who had become unable to work. The nature of this award is that it assumes that a person would be unable to return to work after such treatment. This may be a reasonable assumption in relation to the period in question, when the stigma resulting from having a period of inpatient psychiatric treatment was more likely to make it difficult to secure employment. It is not clear that the same stigma attaches to psychological treatment. We do not therefore suggest that the eligibility for this award should be altered.

TEG Advice:

• The Government’s proposals should be implemented; recognising the impact of severe psychological harm through the SCM equivalent severe health condition, based on the experience of long-term disability rather than requiring the cause to be specified before eligibility is accepted.

Recommendation 6b Exceptional financial loss

The Infected Blood Inquiry’s recommendation was that the Cabinet Office consult on whether the evidential requirements for exceptional reduced earnings are likely to prove a barrier to people who have sufficient evidence that their eligibility for such an award could with confidence be established on a balance of probabilities, and if so to consider what if any provision might be introduced to enable them to access an award.

Initial Advice

The TEG considered the legal advisors’ explanations of the approach that judges take to make awards that they consider fair, based on reviewing all the evidence put before them by the parties and taking into account a wide range of factors. Our advice in October 2025 was that this is not compatible with a tariff-based approach, which is why Judicial College Guidelines limit themselves to general damages (covered in the compensation scheme by injury, social impact and autonomy awards). 

As the Inquiry’s Additional Report noted, it is unusual for there to be any evidence which will show on balance of probabilities that earnings would have been higher than UK median earnings. We have considered whether provision could be made for those who had secured professional qualifications; for example as lawyers, accountants, or medical doctors. However, we noted that these professions had significant drop-out rates and also a wide range of lifetime earnings. It would be possible to examine median salaries and to seek to create a profile that would take into account years of training when earnings were lower than provided for in the compensation scheme (which assumes an even earning level across every year of working age life). However, we do not think this would lead us to conclude that it was probable that people would achieve higher lifetime earnings than already allowed within the scheme. We also noted that if eligibility were expanded to cover some groups with defined career tracks it may create inequity between those who can benefit and those who cannot. Our advice is therefore that future earnings of potential high earners are too speculative to be accommodated in the tariff-based compensation scheme. We note that those individuals who consider that they have compelling evidence will be able to put the issues before a court.

Consultation

We understand that the consultation responses were disparate and demonstrated differences of views. For example, some respondents felt more should be paid to people who achieve certain educational milestones but other respondents opposed this. The Cabinet Office did not bring this issue to the TEG. Instead they held a meeting with law firms recognised as representing infected and affected to discuss potential approaches. This is therefore a matter for the Government rather than the TEG.

Conclusion

We have no basis to alter our initial advice that future earnings of potential high earners are too speculative to be accommodated in the tariff-based compensation scheme. 

Recommendation 8a Affected supplementary route

Background

The Scheme provides compensation for psychological and psychiatric harm as part of all core awards to acknowledge that people will have suffered this category of harm due to their relationship with an infected person. The injury award reflects the quantum of damages that would be ordered by courts in respect of psychological damage, distress, anxiety and emotional upset that are likely to have been caused. The Expert Group noted a number of potential comparators for social impact awards, including Judicial College Guidelines on “the indignity, mental suffering, humiliation, distress, or anger caused” for victims in abuse cases. 

For immediate family members, where the law provides for loss of society or bereavement awards, then this leads to an increase in injury awards in cases where the infection is likely to have contributed to an early death (cirrhosis, decompensated cirrhosis, liver cancer and HIV). No separate or specific evidence of psychological and psychiatric harm is necessary, it follows automatically. There is, therefore, no requirement to show that people have received psychiatric treatment or psychological therapy. 

The Inquiry’s Additional Report made the following recommendation in relation to an affected supplementary route:

The Minister give consideration to there being a supplementary route for people affected. This could include opening the supplemental award for severe psychological harm to people affected. He should involve parents, children, siblings, partners and carers, and their legal representatives if wished, in this consideration.

In July 2025 the Government accepted the Inquiry’s recommendation to consult on whether it is feasible to implement a supplementary route for additional compensation for affected people who suffered the severest harm. The Government consulted on whether it was possible to implement a supplementary route for the affected based on severe psychological harm, as the Inquiry suggested, without causing significant delay to the process of compensation as a whole

Initial Advice

In our October letter to the Minister, we suggested that, rather than seeking to define eligibility by requiring evidence of particular harm, it might be more helpful to describe those who are likely to have suffered particularly badly. This approach could lead to an increase in injury awards. We had not at that stage considered how such groups might be determined. We said that understanding the views of the community on this point would be important and we encouraged the Government to elicit these as part of the consultation. 

We also noted that our view at that time (prior to consultation) was that a new SHC addressing severe psychological harm is not workable for infected people. Consequently, we doubted that this approach could be the way forward for the affected. 

We stated our intention to consider this approach further in the light of consultation findings and feedback from the community.

Summary of feedback from representatives at the roundtable

Representatives provided statements of views based on the experiences of the groups they represent. Key themes included:

• The ongoing nature of trauma: Participants emphasised that the impact of the infected blood scandal is still unveiling. Affected people are continuing to develop new symptoms as they age, and the psychological impact can take decades to fully manifest.
• Access to specialist care: It was noted that many affected people have been supported by psychologists for several years. However, there was significant frustration regarding the requirement to prove this harm repeatedly. 
• The severity of bereavement: Representatives argued that the current framework does not sufficiently distinguish between the impact on those living with an infected person and those who have been bereaved. Death was described as the most serious outcome, permanently extinguishing relationships and future life.
• Intergenerational impact: The TEG heard moving testimony regarding children who were removed from family homes or placed in care following the death or mental breakdown of parents. These unique situations of displacement and family separation were cited as evidence of harm not currently captured by core awards.
• Stigma and milestones: Spouses and partners highlighted the lifelong impact of being unable to have children or having to undergo procedures like sperm washing. This resulted in a permanent loss of family milestones or worry about being cared for in old age. It was emphasised that the TEG should recognise this “never leaves until the day they die”.

Supplementary Route for People Affected

The participants discussed the implementation of the Inquiry’s recommendation for a supplementary route. The following points were summarised:

• Participants suggested that a supplementary route should be grounded in the proportionality of harm and consistency of evidence. There was a call for an automatic uplift for the affected of deceased infected people.
• Representatives expressed a firm view that there should be no “hierarchy of relationships” or distinction made between relative types. Siblings often feel “forgotten” in the current design. The question in the background paper on specific groups was “triggering”.
• The TEG was urged not to “relitigate” trauma through further intense assessments. Instead, the scheme should accept evidence of objectively verifiable events such as mental health detentions, medical crises, or suicide attempts.
• Discussion focused on the care element paid to estates. Representatives argued that care should not be interpreted narrowly (such as eligibility for a benefit) but should recognise the lived reality that family members provided care as a given, not a choice.
• The scheme should recognise where people have been treated by a psychologist for over 6 months, or been prescribed medications, as evidence for severe psychological harm of affected people. [The TEG has interpreted this to cover a wide range of therapists not a specific professional qualification].

Impacts Beyond Psychological Harm

The Group considered other impacts that should be compensated through a supplemental award:

• Participants identified social and financial impacts that “shape the life course,” including educational disruption, increased student debt, loss of housing, and “bureaucratic retraumatisation”.
• The TEG heard about the traumatic dynamic of family members infecting one another, particularly with Hepatitis B, leading to massive inter-family experiences of survivor guilt and transmission guilt.
• Representatives requested an audit of the “impactful journey” of providing care during a long-term illness, noting that the intensity of this experience often goes unrecognised.

Summary of written feedback received

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.

Key Issues considered by the TEG

The TEG noted that there was support for automatic uplifts and that groups of people identified by the participants in the roundtables and also the responses to the Government’s consultation were broadly those described as ‘affected’ in the compensation scheme. It also noted that there were concerns about creating hierarchies of groups and that detailed investigations might be intrusive and re-traumatising.

The Group reviewed proposals from the Cabinet Office regarding a potential supplementary route for affected people, particularly focusing on long-term impacts of bereavement. The Group discussed a proposal for a 50% uplift to the injury award for certain categories of affected people to better reflect the psychological impact and trauma of losing a family member. It considered that an increased injury award was the most effective way to respond to Inquiry recommendations regarding unrecognised psychological impacts without causing retraumatisation through complex evidential requirements.

The Group noted powerful testimony at the roundtables regarding the trauma of losing a sibling, which often leads to a secondary loss of parental support due to the parent’s own grief. Further consideration of the available clinical evidence suggested the experience of losing a sibling while under 18 should be treated as equivalent to losing a parent at a similar age. 

Although the feedback had drawn attention to cases of significant financial consequences for some affected people, the TEG consensus remains that financial loss awards for the majority of affected people are not practicable due to the extreme variation in individual impacts. The TEG also discussed the complexities of providing guidance on the distribution of estate funds. It was concluded that the Scheme should respect the autonomy of the infected person’s will and existing inheritance laws.

Conclusions and suggestions

The Government has consulted on whether it is feasible to implement a supplementary route for additional compensation for affected people who suffered the severest harm. We were asked to advise on how criteria for those affected who suffered severe psychological harm might be defined, including the threshold level and any guidelines or frameworks to reference when determining appropriate award amounts.

We have heard that there is a very wide range of experiences, leading some to suggest a tariff scheme cannot adequately reflect the harms caused. We have also heard that there are some groups who experienced particularly severe harms that are not adequately recognised. 

We think that the current award amounts do not adequately reflect the loss of autonomy and psychological harm suffered by those infected as children. We propose that there needs to be an uplift to the autonomy awards for those infected as children. Loss of earning potential is already covered by the financial loss provisions but we consider this is not sufficient to acknowledge the very significant psychological impacts of being infected at a young age. 

We have reviewed the current awards for affected persons against likely legal compensation, applying the guidance from the Infected Blood Inquiry’s Interim Report on compensation that we should take into account, although not be limited by, the approach that courts would take. In general, this analysis has confirmed that existing awards match or exceed what we would expect a court to order. The Inquiry’s Additional Report did not identify any legal authorities that we have not taken into consideration. Nor have any such authorities been identified to us through our engagement. However, there are some categories of relationships and experiences where we believe supplementary awards are required if the scheme is to reflect impacts that are likely to have been experienced.

We also propose increases to reflect the fact that bereavement elements of the current scheme, although in line with likely awards under the Scottish ‘loss of society’ approach (which we prefer to the much lower amounts paid under the English legislation), underestimate the impact of bereavement in the context of infected blood. We advise that there should be a 50% uplift in core injury award for parents of deceased children and bereaved partners. This would apply for people related to infected persons in severity bands where death is likely to occur due to the infection, even if this has not yet happened. This treats all those affected by bereavement in a comparable way, although the actual amounts will vary in accordance with the structure of the scheme.

We also think that the psychological impact of becoming an affected person in your formative years, even if you are not bereaved, is greater than currently recognised by the compensation scheme and propose a 50% uplift for injury awards for siblings and children affected while under the age of 18.

TEG Advice: 

• There should be an uplift of 50% to the Core Autonomy Awards for children infected while under 18 years. 
• There should be an uplift of 50% to the Core Injury Award for bereaved affected persons who lost a child while the child was under the age of 18 years and for those who lost their partner as a result of the wrongful infection.
• There should be an uplift of 50% to the Core Injury Award for children and siblings affected while under 18 years.

Additional Issues to be considered

We received representations about two health conditions where it was felt the scheme did not address people’s experiences. These were specifically discussed by the TEG but this consideration did not lead to us suggesting any amendments. 

Hepatitis B

In addition to the general principle that SCM should be available to people with Hepatitis B, a number of issues were highlighted by one representative where it was felt the Scheme did not reflect the experiences of those with Hepatitis B. This included the complexity of co-infection with Hepatitis D and the side effects of antivirals, the ‘acute’ Hepatitis B category, and the mismatch of current criteria (requiring tests six months apart) with the reality of testing practices or the severity of the illness for some.

A specialist clinical briefing was provided on the nature of Hepatitis B to inform technical advice:

• The Group noted that Hepatitis B is often a lifelong chronic illness acquired through maternal transmission at a young age or contact with young affected siblings, particularly for those born outside the UK. Nuanced assessment is required to distinguish these from infections caused by blood products. This could involve weighing the duration and extent of childhood exposure with the risks from transfusion at the time it was administered.
• Unlike Hepatitis C, chronic Hepatitis B may not always induce the same patterns of fatigue, but it carries a significant, lifelong risk of liver cancer and reactivation, even if the virus appears quiescent.
• The Group reviewed the safety profile of common antivirals like Tenofovir Disproxil (TDF). While varying degrees of renal toxicity are known but uncommon side effects, those associated with severe clinical outcomes are rare. In cases where TDF is a factor in renal failure, this would make them eligible for compensation on the basis of that failure without needing to establish a link with the drug. Given this, the Group does not currently see a clinical rationale for a broad new category of compensation for these rare drug impacts.

The TEG noted that many of the issues brought to our attention had been already considered, including by the Infected Blood Inquiry. The previous Expert Group had noted that most of those who suffer an acute Hepatitis B infection that clears without becoming chronic will experience limited effects and some may not even be aware that they had been infected. Compensation had been proposed on that basis and had not been identified by Sir Brian Langstaff as requiring change.

If the increased risks of cancer materialised, this would be reflected in the scheme as it would trigger a higher severity band. The Group considered whether a specific award for “health anxiety” regarding potential reactivation was warranted. The Group concluded that while this anxiety is real and cumulative, it is already encompassed within the existing injury award tariffs.

Thalassaemia

The TEG received representations that the impacts of infections on people with thalassaemia were not sufficiently recognised in the Scheme. These drew our attention to the rapid progression of liver disease. We heard that people with thalassaemia often suffer from iron overload caused by regular blood transfusions and that when combined with a Hepatitis C infection, this significantly accelerates the development of cancer and liver disease and reduces life expectancy. We consider that this would be recognised in the scheme as people’s compensation will be increased at the point such progression occurs.

We also heard that multiple courses of interferon were given to people with thalassaemia. We consider that this is addressed by the provision for uplifts in relation to each course of interferon treatment. 

We also heard that the burden of disease and treatment was particularly onerous for people with thalassaemia. Representatives told us that the side effects of Hepatitis C treatments are often more severe for this group, leading to complex health needs that are considered not currently to be captured by the standard tariffs in the Scheme. The evidence we received indicated that there were significant reductions in quality of life and major psychological impacts but also that it was difficult to separate those related to wrongful infections from the burden of thalassaemia and associated regular transfusions. The core awards already recognise significant psychological impacts in both injury awards, which we consider to be comparable to judicial compensation, and loss of earning capacity. The fact that specific evidence is not required for these reflects the acceptance that this is likely to be the experience of all those infected. The TEG considers this is the proper approach, given the representations received from the UK Thalassaemia Society that evidence of formal psychological assessments is likely to be unusual. We did not have evidence on which we could reasonably assess the likely additional impact on financial loss. We have therefore not recommended any specific changes to the compensation scheme based on a thalassaemia diagnosis. 

People with thalassaemia who have suffered long-term severe disability or exceptional financial loss after a wrongful chronic infection can apply for the existing supplementary awards (including the SCM award that we propose). We do not advise that thalassaemia needs to be specified as a separate severe health condition under the scheme for these impacts to be recognised.

TEG Advice to Government

In this section we separate out our advice to the Government on actions that we suggest should be taken in relation to the matters referred to us. The reasoning behind this advice can be found in the relevant earlier sections, where this advice was first set out.

Recommendation 4a: Recognition of the impacts of interferon treatment

A Level 2B Interferon Award is more appropriate than a Level 3 award, provided that multiple courses of treatment are recognised. 

Those with longer term impacts should have these recognised under a severe health condition award based on long-term disability.

Recommendation 4b Recognition of Special Category Mechanism (SCM)

All those assessed as eligible for SCM or its equivalents under the support schemes should receive the supplementary SCM award from the date of assessment, including the estates of those now deceased but who had been assessed while they were alive.

New applications for the supplementary awards from those with chronic hepatitis should be limited to living persons who can put forward evidence of impacts on their ability to work in excess of the 40% reduction already assumed in the core awards

Eligibility for increased financial loss awards should be based on self-declaration of impacts on earning capacity, supported by evidence of previous and current earning capacity. That would be assessed by IBCA to confirm that there has been a loss of earning capacity of more than 40% as provided for in the core award.

There will be people who are not earning and so such comparisons will not be available. For these cases, eligibility for increased financial loss could also be based on self-declaration of inability to carry out daily tasks such as leaving home, using public transport, shopping for essentials, walking more than 50 metres, climbing stairs, lifting objects from the ground or a work surface in the kitchen, cooking. People would be invited to explain these impacts and provide supporting evidence, which might come from sources such as a statement from a health professional, social services assessment, benefits records.

No change is advised to the Government’s proposals on 70% financial loss for the SCM equivalent SHC, noting that there is a separate route whereby exceptional financial loss can be recognised.

No clear basis for altering care awards has been established, so that no change is advised by the TEG to the proposed care award for those eligible for the SCM. 

Recommendation 5a Severe psychological harm

The Government’s proposals should be implemented; recognising the impact of severe psychological harm through the SCM equivalent severe health condition, based on the experience of long-term disability rather than requiring the cause to be specified before eligibility is accepted.

Recommendation 6b Exceptional financial loss

We have no basis to alter our initial advice that future earnings of potential high earners are too speculative to be accommodated in the tariff-based compensation scheme. 

Recommendation 8a Affected supplementary route

There should be an uplift of 50% to the Core Autonomy Awards for children infected while under 18 years. 

There should be an uplift of 50% to the Core Injury Award for bereaved affected persons who lost a child while the child was under the age of 18 years and for those who lost their partner as a result of the wrongful infection.

There should be an uplift of 50% to the Core Injury Award for children and siblings affected while under 18 years.