Policy paper

Infected Blood Inquiry Response Expert Group Summary Report (HTML)

Published 21 May 2024

Foreword by the Minister for the Cabinet Office, Rt Hon John Glen MP

I would like to express my sincere gratitude to the Infected Blood Inquiry Response Expert Group, sagely chaired by Professor Sir Jonathan Montgomery, which has helped the Government to design a compensation scheme to bring overdue financial redress to the victims of infected blood. 

No measure, financial or otherwise, can fully compensate for the unimaginable losses and hardships suffered by the victims of this devastating scandal. I recognised the importance  of ensuring an easily accessible scheme for receiving fair and promptly paid compensation is made available for all victims.

That is why in January 2024, I appointed the Expert Group to advise on the Government’s response to the Infected Blood Inquiry’s Second Interim Report recommendations on compensation. Bringing together legal and clinical expertise, and assisted by social care specialists, this Expert Group has provided invaluable support to officials designing the Infected Blood Compensation Scheme.

In April 2024, I published the Terms of Reference for the Expert Group, which set out the role and purpose of the Expert Group, including the duties of the Chair, Professor Sir Jonathan Montgomery. Alongside providing an expert opinion to officials designing the policies and tariffs related to the compensation scheme, the Expert Group was asked to consider the wide variety of evidence available to it to formulate advice. However, it was not in the scope of the Expert Group’s work to  invite a person (or group of people) who is not ordinarily a member of the Expert Group to attend a meeting to provide such evidence. Importantly, the Expert Group was given the freedom to work and advise the Government in whatever way it saw best, without constraints.

Today, I am pleased to publish the Expert Group’s Summary Report and advice on how the Inquiry’s Second Interim Report recommendations could be implemented in a tariff based compensation scheme.

But this report does not mark the end of the Expert Group’s work. The Interim Chair of the Infected Blood Compensation Authority, Sir Robert Francis KC, supported by the Expert Group, will now undertake a validation exercise with representatives of the infected blood community on the proposed Infected Blood Compensation Scheme.  The duration of the exercise will necessarily be limited by the 3 month deadline for making regulations in the Victims and Prisoners Bill. This will help the Government ensure the scheme is fit for purpose and will best serve those it is intended for. Sir Robert Francis will provide further detail on this exercise in due course.

The Government must continue to harness the knowledge of experts and listen to the voices of those directly impacted as it works to recognise and compensate the victims of infected blood. 

Rt Hon John Glen MP, Minister for the Cabinet Office.

Acknowledgements & Thanks 

From the Expert Group Chair, Professor Sir Jonathan Montgomery 

I am extremely grateful to my colleagues on the Expert Group, and to the civil servants who have supported us, for their commitment during the intense period of the work that has led to the advice that we summarise here. Each has brought distinctive professional expertise to our deliberations. They have worked together with mutual respect and compassion for those who are entitled to justice under the compensation scheme recommended by Sir Brian Langstaff in his Second Interim Report. We have aimed to provide robust and objective advice on technical aspects of the design of the scheme. We have been acutely aware that justice demands fair compensation and that the very long delays that victims have already suffered mean that it must now be delivered as soon as is practicable. We hope that our advice will assist the Government in that task.

Membership of the group is set out in Annex A

Summary Report

The moral case for compensation for the victims of the infected blood scandal is compelling. The impact of the wrongful infection on their lives is substantial and far-reaching. They have been let down by the NHS, in whose care they trusted. Information to which they were entitled has been withheld or lost, both by the health service and Government. They have suffered terrible stigma when they deserved support. Justice has been long delayed.

In his Second Interim Report, Sir Brian Langstaff set clear expectations for the scope and shape of the compensation scheme that described who should be eligible and the categories of loss that should be reflected in the awards. He recommended that it should be based on a tariff approach and that it should be characterised by speed of provision, simplicity of process, accessibility, fairness and efficiency. Sir Brian also recommended that proactive support would be needed for people claiming the compensation to which they are entitled. 

It will be for His Majesty’s Government to determine the details of the final scheme, through  the Regulations that will be laid before Parliament within three months of the Royal Assent to the Victims and Prisoners Bill. Our task has been to advise on how Sir Brian’s recommendations could be implemented. In particular, we have been asked to ensure that compensation should be deliverable rapidly; that the scheme would be worthy of the trust of the communities which have been infected (and also affected), so that they would prefer it to litigation through the courts; that there should be a simple and sensitive application process (that avoids re-traumatisation), that requires of applicants minimal time, effort or stress.  Sir Brian recommended that the development of the scheme should involve the infected community. We support that principle, but our terms of reference have precluded public engagement in our work. We hope that our advice can be validated by wider discussion before the Regulations are drafted.

Sir Brian recommended that the compensation scheme should provide for awards based on five components and that their quantification should reflect different impacts on people who were infected and on those who were close to them (described by Sir Brian as ‘affected’) and also take into account differences between the diseases caused by HIV, HCV and HBV and the impact of co-infections. Sir Brian explained that the components of compensation need to address

• The Injury suffered
• The Social Impact of that injury
• The interference with people’s Autonomy
• The additional Care costs that people incurred as a result of the injury, and
• The Financial Loss that was suffered from being unable to work

Awards for people who were wrongfully infected

Sir Brian recommended, building on the Compensation Study undertaken by Sir Robert Francis, that the scheme should reflect the different impacts of infection by developing severity bandings but did not define them. The clinical members of the Expert Group have proposed the following bandings, beginning with those who have experienced the most significant impacts 

• People who have been co-infected with HIV and/or HCV and/or HBV
• People who have been infected with HIV
• People who have been infected with HCV or HBV who have progressed to liver cancer, decompensated cirrhosis, those who have needed to receive a liver transplant, 
• People who have been infected with HCV or HBV who have progressed to cirrhosis
• People whose HCV and HBV infection is chronic (lasts more than 6 months) but has not progressed to cirrhosis
• People who have been acutely infected with HCV (but did not develop chronic infection)
• People who have been acutely infected with HBV AND died of their infection during the acute period

These bandings are based on clinical markers. The Expert Group considered that it was important to ensure that the evidence required from people claiming their right to compensation should be readily available to them, be verifiable in order to enable objective assessment of their entitlement, be proportionate to the need to operate the scheme and that inappropriate intrusive questions should be avoided. 

For people who have been infected, this enables an injury award for each band to be calculated by reference to judicial guidelines on the damages that are appropriate in personal injury cases. This has been done by taking the descriptions developed by clinicians of the symptoms that are typical of people with these diagnoses and examining case law and judicial guidelines for comparable cases. These injury awards would be uplifted where people suffered more than one infection as the clinical advice is that co-infections are significantly more harmful.

The Expert Group believes that social impact awards should not differ as much across the bandings as injury awards because the stigma suffered is usually as a result of societal prejudice rather than knowledge of the clinical symptoms. We recommend that there is a flat rate for most beneficiaries that is fixed at the upper end of the band suggested in the report from Sir Robert Francis. This would be reduced for those in the HCV acute band, as they most likely will not have been aware of their infection and the likelihood of stigma is reduced, and increased for those who were infected by more than one virus as the impact is likely to have been more obvious and there was therefore a greater risk of stigma.

There are limited comparators for the autonomy awards that Sir Brian Langstaff recommends as a new head of loss. This needs to reflect the aggravated distress caused by interferences in people’s autonomy and private life such as lack of informed consent, lack of sufficient information about the risks of treatment, and about diagnosis, treatment and testing, or being the subject of research without their informed consent. It should also include the effects of lack of candour and inadequate responses by authority. These may not have all applied to every victim but they will all have experienced a lack of respect for their autonomy in some of these ways. The Expert Group has found elements of the Windrush Compensation Scheme to be the most useful guide to the quantification of this category of award, although it is not a direct comparator.

Care awards aim to compensate for the cost of care that has been received, or its value if it has been given without charge. The clinical experts have set out a typical pattern of care needs after infection in the different clinical bands. Where the wrongful infection was likely to have caused death (or is likely to do so for those still living with the infection), then it would be expected that these awards need to cover a period of end-of-life care, some months of high care, and some years of moderate care, with (for those who survive longer) periods with definite but lower care needs. These patterns are typically different for those with HIV from those with Hepatitis alone. People with decompensated cirrhosis or liver cancer will typically face greater care needs for longer periods than those with cirrhosis or chronic infections. These care needs have been costed by experts who are experienced in valuing care in legal cases. This approach means that once the date and nature of the infection and the clinical banding is known, a formula can be used to calculate the award due for a typical pattern of care needs. This can be paid without the need for further evidence, thereby reducing delay. Where people’s care needs have exceeded the typical pattern, additional payments could be made to cover the actual costs after assessment by the Infected Blood Compensation Authority. Care Awards should be paid to the estates of those infected persons who are deceased to cover the cost of care between the date of infection and death. For those living with wrongful infections a choice should be available between a lump sum to cover the anticipated costs over their expected years of life or periodical payments.

Sir Robert Francis suggested that the calculation of financial loss awards should provide people who were wrongfully infected with compensation based on the assumption that they would have earned 5% more than an average salary if they had not been infected. The Expert Group recommends a formula based on this approach that also takes into account that the impact on a person’s ability to work will vary over time. There will be stages in a person’s life where they cannot work at all because of their infection. At other times, possibly for a long period, their ability to do work will be impaired. The clinical experts have estimated the degree of impairment, taking into account that this would have sometimes been greater prior to improvements in available treatment than it would be in the present day. Many people who have been wrongfully infected will have the length of their working life reduced and this is a loss that must be compensated. The Expert Group proposes that for those who are deceased, awards should include compensation for earnings lost until retirement age based on annual earnings plus 5% and for financial loss between their retirement and their death at half that rate (as would be typical for defined benefit retirement schemes). Compensation for financial losses up to the date of death would be paid to the estate of the deceased.  Where there are dependants of the deceased, they should receive further compensation related to lost earnings between death and the date when the death of the deceased might have been expected in the absence of the wrongful infection. This should be paid directly to the dependants. For those living with wrongful infections a choice should be available between a lump sum to cover the anticipated financial loss during the remaining expected years of life or periodical payments.

Awards for people affected by the wrongful infections of others

Sir Brian Langstaff was clear that awards to people who were affected by the infections of those close to them should be made on the basis that they are entitled to compensation in their own right. The Expert Group considers that this means that the awards should primarily reflect the relationship between the person affected and the person infected rather than which virus or viruses were involved.

We recommend that injury awards should reflect 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. No specific or additional evidence of such impacts should be required beyond establishing the relationship of the person who is affected to the infected person. The scale for injury awards should vary according to the closeness of the relationship, with the largest awards for partners, reducing for parents who have lost children, then children who have lost parents, with others getting a lower rate. For immediate family members, where the law provides for loss of society or bereavement awards, then this should lead to an increase in injury awards in cases where the infection was likely to have contributed to an early death (cirrhosis, decompensated cirrhosis, liver cancer and HIV). 

The Expert Group recommends that there should be a flat rate of social impact award as all those close to people who are infected will have been affected by societal stigma without variation by virus, disease condition or relationship. As Sir Robert Francis noted, awards under this head should be proportionate to those made to people who were infected as it would be inappropriate for those affected to receive more than they did. The recommendation is that the Social Impact award for affected persons should therefore be a proportion of the award for persons with chronic infections.

It is recommended that autonomy awards for those affected by another’s wrongful infection broadly reflect court awards for the intrusion into privacy. These awards should be made to the partners, parents and children of the infected person. For partners, it is recommended that a comparator of judicial awards for very serious intrusions is adopted. For parents and children, it is recommended that the benchmark should be the mid-point of awards that have been made as aggravated damages in privacy cases.

The Expert Group recommends that care costs are part of the awards to infected persons rather than those who are affected. These costs are related to the services required by the person who is infected. They are calculated by reference to their needs and paid directly to them (or if they have died to their estates). It will be for the infected person or those administering the estate of the deceased to choose whether to pass the funds on to others. It would not be appropriate for the compensation scheme to take away the control from the infected person. There would therefore not be separate care awards for those who are affected by the wrongful infection of others. Rather, the costs incurred by them, and which Sir Brian Langstaff recognises must be met by the compensation scheme, would be reflected in the care awards for the persons who are infected. The Compensation Authority could be asked by beneficiaries to pay awards directly to others on their behalf.

Financial loss awards should be paid to dependants of an eligible deceased person in order to compensate for the support that they will have lost due to the death. These should reflect the deceased’s lost earnings between the actual and expected date of death, discounted by 25% to recognise that some of those earnings would have been spent by the deceased person on their own account. As noted above, compensation for financial losses up to the date of death would have been paid to the estate. 

The Expert Group notes that for most people an acute HCV infection was without enduring consequences (that is it was not in the ‘chronic’ severity band) and was often not identified at the time. This means that there would have been very limited impact on those around the person who was acutely infected. It therefore recommends that no awards should be payable to those affected by a person who was acutely but not chronically infected. The Expert Group recognises that some people have developed significant post-viral symptoms following infection and such individuals and their partners may choose to present evidence of impact to the Infected Blood Compensation Authority and seek a further supplementary award.

Clarifications of eligibility criteria

Sir Brian Langstaff set out the eligibility categories for the new compensation scheme. The Expert Group has advised on clarifications required to ensure that in practice the scheme will operate in accordance with the principles that have been set out above.. 

Eligibility for people wrongfully infected by contaminated blood or other products. All those registered with current or previous support schemes will be eligible. Some further information may be requested to enable the calculation of their compensation but not to assess whether or not they are eligible. The Expert Group has identified relevant clinical parameters that should be recorded in medical records that show disease progression. It has also identified imaging and biopsy results that can be used to assess severity banding.

For those persons infected but not previously accepted on to a scheme, evidence of infection and receipt of a contaminated product will be needed. The Expert Group has identified relevant clinical markers of infection that ought to be documented in and accessible from medical records.  The Expert Group recommends that mention of HIV, HCV and HBV on a death certificate should suffice as evidence of infection (although its absence would not be taken to exclude it). Further clarification and examples might emerge as the compensation scheme becomes operational. Where there is an absence of clear medical records of receipt of a contaminated product, the Expert Group recommends that the likelihood of receipt of a blood product could be inferred, for example from major surgical procedures, even if it is not specifically recorded in notes. The Expert Group confirms the finding of Sir Brian Langstaff that there should be no rigid cut-off that precludes claims in relation to receipt of products after any specific dates. However, this may make the causal link between their receipt and the infection unlikely and requires further inquiry. 

Persons who are ‘affected’ become eligible under Sir Brian’s recommendations because of their connection with a person who was eligible for compensation due to their wrongful infection. The Expert Group has recommended definitions of partner, parent, child, sibling to reflect the range of family relationships as well as formal legal status. It suggests that where eligibility is based on having provided care the threshold should be the same as that used for the ‘low’ banding of provision that is used to calculate the care awards made to persons who are infected. This marks a difference between occasional support and regular care. The Expert Group has not been able to identify ways to make workable the category of affected individuals who were ‘so close that it could reasonably be expected that their mental or physical health would be seriously affected by the consequences of the disease, and who have suffered emotionally, mentally and/or physically as a result’.

The Expert Group believes that these recommendations will enable the Infected Blood Compensation Authority to calculate the awards to which people would be entitled under Sir Brian Langstaff’s recommendations promptly and without disproportionate requests for complex or inaccessible evidence. 

Annex A

Membership of the Infected Blood Inquiry Response Expert Group

The Infected Blood Inquiry Response Expert Group is composed of legal and clinical experts, assisted by care specialists. Membership of the group includes:

Chair: Professor Sir Jonathan Montgomery

Sir Jonathan is an experienced healthcare law scholar who has played a leading role in UK public bioethics for many years, having previously chaired the Human Genetics Commission (2009-2012), the Nuffield Council on Bioethics (2012-2017) and the Health Research Authority (2012-2019). Sir Jonathan is currently the Chair of the Oxford University Hospitals NHS Foundation Trust and Professor of Healthcare Law at University College London. Sir Jonathan received a knighthood in 2019 for his services to bioethics and Healthcare Law.

Clinical experts

Professor Jane Anderson CBE

Consultant physician in HIV Medicine at Homerton Healthcare NHS Foundation Trust. Professor Anderson has been involved in the clinical care of people with HIV since the beginning of the epidemic. Professor Anderson is a past Chair of the British HIV Association. Professor Anderson received a CBE in 2015 for services to HIV Medicine and Sexual Health Research.

Dr David Asboe

Consultant and past Clinical Director (2014-2022) of HIV Medicine and Sexual Health, Chelsea and Westminster Hospital, London. Past Chair of the British HIV Association (2013-2016) and past Chair (2019-2022) of the NHS England Clinical Reference Group. Dr Asboe’s specialist clinical and research interests are antiretroviral resistance and treatment, sexual health of people living with HIV, and HIV and ageing. 

Dr Ahmed Elsharkawy

Consultant Transplant Hepatologist at University Hospitals Birmingham with experience in Hepatitis C, Hepatitis B and Hepatitis D and extensive knowledge of liver fibrosis. Dr Elsharkawy is an honorary senior lecturer at the University of Birmingham and a Fellow of the Royal College of Physicians of London and past Chairman of the British Viral Hepatitis Group. He is the Treasurer of the British Association for the Study of the Liver and a member of the governing board of the European Association for the Study of the Liver. 

Professor Graham Foster

Professor of Hepatology at  Queen Mary University of London and a consultant at Barts Health Trust. Professor Foster has a long-standing interest in the management of chronic viral hepatitis and is a past President of British Association for the Study of The Liver and NHS England Clinical Lead for Hepatitis C. 

Professor Patrick Kennedy

Professor of Translational Hepatology at Queen Mary University of London with extensive experience in viral liver disease. Professor Kennedy is an expert advisor for the World Health Organisation, the European Association for the Study of the Liver and he provides expert opinion for the United Kingdom Advisory Panel on blood-borne viruses. Professor Kennedy is the current chair of the British Viral Hepatitis Group and former Lead for the British Association for the Study of the Liver Hepatitis B special interest group. 

Dr Ian Williams

Former senior clinical academic in the Centre for Clinical Research in Infection and Sexual health, Institute for Global Health at University College London and past honorary consultant physician at Central North West London NHS Trust and University College London Hospitals NHS Trust. Dr Williams has extensive clinical and research experience in HIV medicine since 1987. Dr Williams is a past chair of the British HIV Association and chair of  the clinical reference group for HIV for NHS England from 2015 to 2019.

Legal experts

Legal advice was provided by Browne Jacobson LLP

Care experts

The Expert Group received this advice from health and care expert witness agencies including:

• Apex Health Associates
• Lisa Barnes & Associates Ltd

Infected Blood Inquiry Response Expert Group: Terms of Reference

The Terms of Reference for the appointment of the Expert Group were published by the Cabinet Office on 17 April 2024 and have been updated to reflect the composition of the group.