Infected Blood Compensation Scheme (Amendment) Regulations 2026
(3 weeks, 1 day ago)
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Baroness Anderson of Stoke-on-Trent
That the draft Regulations laid before the House on 18 June be approved.
Relevant document: 8th Report from the Secondary Legislation Scrutiny Committee (special attention drawn to the instrument)
The Parliamentary Secretary, Cabinet Office (Baroness Anderson of Stoke-on-Trent) (Lab)
My Lords, we must never lose sight of why we are here to debate these regulations. The infected blood scandal was a catastrophic failure of the state. It is a tragedy measured not only by the pain and suffering of its victims but by the decades it took for the suffering to be recognised. The victims in the scandal have suffered unspeakably, and the former Prime Minister, when leader of the Opposition, acknowledged the suffering caused by continued systemic failure. Our new Prime Minister has long supported the infected blood community and its fight for justice. I want to reassure noble Lords that the Government will not deprioritise this important work.
Before I move on to the substance of the SI, I will take a moment to reflect on the people behind the statistics, specifically the families of the infected, who have had not just to watch as their loved ones suffered in front of them but to fight for justice, in some cases for decades, putting their lives on hold and changing them irreversibly. We must recognise the sacrifice of the families, carers and campaigners.
When I first spoke at the Dispatch Box on the infected blood scandal in March last year, it was to discuss the second set of compensation regulations. I updated your Lordships’ House on the progress IBCA had made, specifically that 255 people had been asked to start their compensation claim, and £44 million-worth of offers had been made. A substantial amount of progress has been made since then. Indeed, as of 14 July, 5,404 people have been asked to start their claim, with over £2.7 billion of offers made. That is not to say that our work is done, which is why we are here today.
The regulations at hand are a direct product of what we heard in the consultation. I am sure noble Lords will appreciate that there is a diversity of views within the community, and the Government have done what they can to consolidate these views to ensure that the changes we are making reflect the thoughts and feelings of the majority. I will briefly summarise those changes.
Regulation 3 introduces a new level 2B award, as recommended by the inquiry, so that people who suffered from the side effects of interferon treatment receive an additional injury award, as well as further financial loss and care compensation, to reflect the impact it had on their lives. Following the consultation, the regulations also make sure that people who received more than one round of interferon will be properly compensated for each of those rounds of treatment. To be clear, the introduction of the level 2B banding is in line with the inquiry’s recommendations, which set out that the choice between creating this new banding or uplifting those who receive treatment with interferon to level 3 was for the Minister for the Cabinet Office to take.
Regulation 4 removes the 25% deduction applied to past care compensation for people who choose to receive support scheme payments for life. Following the consultation, the regulations make sure that people receive past financial loss compensation based on whichever of the two ways to calculate this award is most financially beneficial to them. The Government have chosen to do this to recognise that selecting only one way of calculating this award would mean that some people’s expected awards may reduce in size. By running both calculations and giving each person whichever is the highest amount in their personal circumstances, we ensure that everyone gets fair compensation for this award.
Regulation 5 makes provision for a 50% uplift to the core autonomy award for those infected under the age of 18, calculated based on the highest severity of infection they experienced during childhood.
Regulation 6 amends the eligibility criteria for the unethical research award so that everyone treated for a bleeding disorder before 1986 will receive an unethical research award. The regulations also introduce a new unethical research award for children. This means that people who were treated for a bleeding disorder in childhood will receive an uplifted award. The regulations also increase the amount of compensation that all eligible people receive for this award. It is one of the most shocking aspects of the scandal, and I am sure that noble Lords will agree that no amount of money could ever make up for the heinous experimentation that happened, particularly when that took place on children. We have listened to the feedback received through the consultation and, as a result, people who attended Treloar’s will receive £60,000, rather than the £25,000 proposed in the consultation. Other children will receive £45,000. Those treated in adulthood will receive £30,000, tripling the amount they currently receive.
Regulation 7 ensures that everyone who was eligible for the special category mechanism or an equivalent payment through the infected blood support schemes receives additional financial loss and care compensation. Following the consultation, these regulations ensure that everyone in this position has the award backdated to 2017, when the SCM award was first introduced, regardless of when they were assessed. Living people who were not assessed as eligible for SCM can now apply for it through IBCA, including those who were previously unsuccessful in their application to the IBSS.
Regulations 8 and 9 make changes to the exceptional loss award under the supplementary route. These regulations introduce a compensation uplift of £60,000 for people who had entered or had an offer to enter a career that generally would have paid 10% more than the gross national median average earnings as determined in 2024 at any point prior to retirement age but were unable to progress in this career due to their infection. This award will be made on top of their core route financial loss award.
We also heard in the consultation that some people are concerned that they will not be able to access the exceptional loss award if they do not have historic payslips. The Government will work with IBCA to ensure that all relevant evidence can be used to help someone show that they are eligible for the exceptional loss award so that that is not a barrier. The Government have been clear that we want the scheme to be as sympathetic and unburdensome to applicants as possible.
Regulation 10 introduces a 50% uplift to the core injury award for some affected people. This includes eligible bereaved partners, and children and siblings who themselves have been affected under 18 years of age. Eligible bereaved parents will also be able to receive this award in the tragic circumstances where their child passed away while under the age of 18. I assure noble Lords that, as with the rest of these regulations, the decisions we made on this award directly reflect what we heard through the consultation about the specific impacts of the scandal on children.
Regulations 11 and 12 are unrelated to the public consultation and relate to the transfer of responsibility for making support scheme payments from the infected blood support scheme to IBCA. To maintain consistency with the support schemes, the value of someone’s support scheme payments is uprated every year in April at the rate of CPI in the previous September. These regulations therefore account for the next CPI uplift taking place in April 2027, after IBCA takes responsibility for making support scheme payments for the infected blood support schemes.
The changes that I have set out are the result of this Government accounting for the variety of views that we heard in the consultation and balancing this with a tariff-based scheme that can be delivered as quickly as possible. Today’s debate, while focused on the regulations, is not about the Government’s work on this matter. It is about those people who have lived through some of the most tragic circumstances and doing what we can to bring them justice. I beg to move.
Baroness Brinton
At end insert “but that this House regrets that the draft Regulations do not address the concerns expressed by many victims about the changes made from the original proposals in Sir Brian Langstaff’s Inquiry Report and Additional Report on Compensation; further regrets the slow progress they make in addressing the cases of affected victims, while welcoming the progress in compensation for the living infected victims; expresses concerns about the arrangements for estates of deceased victims; and notes the difficulties in implementation they will pose for the Infected Blood Compensation Authority, which may lead to further delays in providing compensation.”
Baroness Brinton (LD) [V]
I thank the Minister for her introduction to the SI and for the recent meeting. I will ask her many questions. If she cannot answer them all, I will look forward to hearing from her in due course. I have tabled this amendment because of very serious disquiet from infected and affected victims about changes to the scheme, including some in this SI, and real worries about the new processes. I thank the individuals and infected blood organisations for contacting me and echo the points made by the Minister about the seriousness of what has happened to them and their lives and the loved ones they have lost.
Unfortunately, the changes have destroyed what remained of the trust of many of the victims and have had a deeply damaging consequence on people already victimised for decades by our NHS and Governments past. There was real hope after Sir Brian Langstaff’s full inquiry report in May 2024 and his additional report last July stating that government and IBCA needed to review their processes to get them right and follow his recommendations.
IBCA says that scheme managers attend a three-week training course. Astonishingly, there are no assessors or reviewers who have clinical experience in this specific area. Victims tell me that assessors just do not understand what had happened medically to victims, causing immense distress. Both the Haemophilia Society and the Hepatitis C Trust say that the arbitrary and indefensible inequities resulting from this lack of expertise must be addressed. For example, the consequences of using interferon as an early treatment for hepatitis C are similar to having severe chemotherapy, which has caused, on top of the infection, very long-term life-changing damage to victims. The new level 2B uplift of two years’ financial loss award just does not recognise the lasting medical legacy from interferon treatment.
Will the Government agree that those treated with interferon should receive a permanent uplift to their financial loss and care awards? Sir Brian Langstaff said clearly in his inquiry report that assessors must not ask for inappropriate evidence. IBCA assessors keep asking clinicians in haemophilia centres for the exact date of infection, but the inquiry report set out in detail how many health records were destroyed many years ago. Worse, these IBCA requests then result in long pauses to the processing of claims as well as frustration from clinicians and, frankly, despair from victims.
This burden of exact proof should be relaxed, as Sir Brian said. It is clear, over the decades of illness and treatment, roughly when people were infected. Arguments about an exact date in the decade of infection do not change the subsequent decades of ill health, loss of employment, infection of family and consequences for affected victims. Will the Government stop this practice, take Sir Brian’s common-sense approach to the burden of proof and relax exact evidence requirements for infected and affected families once it is clear roughly when people were infected? Will the Government address this and other operational problems as a priority?
Concerns continue about the unethical research awards. I am glad that the Minister mentioned this. It is not clear exactly how these awards were calculated. Please can this be explained clearly and the level reviewed, reflecting the seriousness of the treatment? To be absolutely clear, this was the NHS and the state using children as guinea pigs without their or their family’s knowledge or understanding of the risks. It is still truly shocking and not just a minor dereliction of duty.
The IBCA technical experts group’s discussions about how to handle suicide or attempted suicide are appalling. It beggars belief for officials to suggest that people might wish to commit suicide in order to secure some further compensation for their family. It demonstrates a complete lack of understanding of what the families have been through, long before the scheme was created more recently. Their view—that is, the technical experts’ view—contradicts the Government’s own view that the infected blood scandal represents a system failure with
“a profound and lasting impact on the lives of thousands”.
No wonder families are distressed.
Compensation for carers is also causing real concern. Many affected people provided unpaid care for family members, including children, suffering financial disadvantage and missing work opportunities. The current scheme does not recognise this financial and personal loss, so will the Government review this injustice?
The Government say that the care award for deceased estates recognises care received by the infected person, but this award is automatically passed on only through the law of succession. Therefore, family members who may have provided full-time care for decades, but who are not in that direct line of succession—for example, a parent or a previous wife—are excluded from the estate. That is a denial of everything that family carer did and lost. How is this fair? Also, the financial loss payments for eligible dependants of the deceased infected people do not address the substantial difference in overall compensation between an infected person who survives to claim, and one who dies just before compensation is paid. The financial loss was the same; the difference is catastrophic.
Can the Minister say why the infected injury award increases according to the severity of the infection, but the tariff ends before the most serious outcome of all, the death of the infected person, and why there is no recognition of this ultimate harm? The Treasury uses its compensation “death discount” if there was any physical separation of the couple before death. One caregiving widow left the marital home because she feared her husband’s behaviour—a side-effect of his infection—with their children. The Treasury’s actions seem unforgivably hard.
These are just a few of the concerns of the infected blood community, and I hope the Government will review these issues urgently. I beg to move.
Lord Patten (Con)
My Lords, time is short not just for speakers in this debate, but increasingly so for the remaining victims of infected blood to get justice after one of the biggest ever failures by the British state on record. Curiously enough, all infected blood records are missing in Northern Ireland, for unknown reasons; therefore, I am speaking simply for England, Scotland and Wales. But I strongly agree with all that my noble friend Lady Brinton has just said in speaking to her regret amendment. For sure, there is an ongoing process to recognise and compensate, but it has been fraught with a lot of confusion, muddle and terrible delays, and still today, no sense of urgency that I can see.
These 10 regulations are in fact just one more skirmish with reality, causing alarm indeed in the way they have been mooted. For example, one correspondent from the infected blood community world, who I do not know, wrote to me out of the blue, thinking that this set of regulations gives the last chance to do anything at all. This is not so, if Ministers decide, for they can change policy and can change pace at will, but I have no sense that this is happening. Indeed, the obfuscation continues. The Minister kindly provided me with a Written Answer earlier this month, telling me that there have been 19,565 claimants to the Infected Blood Compensation Authority, of whom only 3,336 have been paid. That is clear and straightforward, and I thank her for that.
On the other hand, in a parallel Question—again, in this month—about the numbers who have died before settlements, amid quite a chunk of verbiage there was no answer at all about those who have died before settlement has happened. I think we should have this information and it is wrong that we do not. I look to the Minister perhaps to revisit my Question when she has a moment, to see what can be done.
This whole issue has been criss-crossing ministerial desks for decades. It was certainly doing that when the new Prime Minister was himself Secretary of State for Health, which was quite a long time ago. I trust that his door at No. 10 will always be open to the afflicted, and I hope that, while he is Prime Minister, the shutters are never going to come down on those who are afflicted wishing to get access. I warmly welcome the appointment of the new Secretary of State for Health. She is—I say this with respect—a noted Whitehall warrior and has real depth of experience, over decades in ministerial office. I hope she will now get a real grip, as a matter of urgency, on this faltering process, cutting through the administrative thickets before many more die as continuing mortality takes its toll.
Baroness Finlay of Llandaff (CB)
My Lords, we must thank the noble Baroness, Lady Brinton, for her introduction to this amendment. Like others, I have had some desperately sad correspondence from widows whose husbands died relatively early after infection. Infection denied them children, some suffered serious discrimination within their family, some find that their husbands medical records are missing, and probate rules have created barriers. All those affected are so deeply wounded by the lasting emotional, financial and practical consequences of the scandal, retraumatised over decades of seeking accountability. As one widow wrote,
“no amount of money will bring back our loved ones, and there is no way you can put a figure on what we have had to go through”.
There are ongoing problems, and we must follow Sir Brian’s lead. Two years ago, though, not a penny was going out the door in recognition of the wrongs perpetrated. The delays until now are shameful. I thank the Minister and the civil servants for meeting me. The civil servants working on this are being as scrupulous as they can. The compensation coming from the Treasury, in effect from taxpayers, recognises as a nation the extent of the scandal: the NHS purchased contaminated products, and some professionals abused the trust of people in services meant to protect and respect life. We have gone from nowhere to where we are today, thanks only to those wronged speaking out, time and again, to a system that seemed deaf to their plight.
My noble friend Lady Campbell of Surbiton cannot be here today. Through her own experiences, she has taught me and others so much. I am grateful to her for sharing her thoughts on this amendment and on the need for recognising those affected, as well as those infected. Differing eligibility criteria and inconsistencies in estimating financial loss and bereavement have led to inequalities and unintended consequences. Those affected fear claims over their deceased infected relative being increasingly delayed.
The proposed death recognition award should be amended to recognise those who experienced the bereavement, rather than automatically becoming part of an estate, as probate barriers can stop the person most affected being recognised in the compensation. Deceased infected claims progress more slowly than many expected, prolonging uncertainty for bereaved families. Families who provided years of unpaid care feel that their contribution has gone inadequately recognised. Because financial loss awards differ depending on dates and circumstances, many families believe this creates unjust disparities in compensation that they cannot understand.
Thousands of families live with the consequences of the infected blood scandal. While no compensation can replace a loved one, it can acknowledge the profound loss suffered and help restore confidence that the state is committed to delivering justice fairly. There is an ancient saying: “Trust arrives on foot and leaves on horseback”. This compensation scheme and the Hillsborough law might be the foot soldiers of trust in this nation, if, and only if, we have candour and get the subsequent actions right.
Baroness Bennett of Manor Castle (GP)
My Lords, it is a great pleasure to follow the noble Baroness, Lady Finlay, and all the speakers in this debate thus far. I continue where she left off, taking a moment to look at the big picture.
We have a huge problem with trust in politics and government in our society at the moment. Sometimes, attached to that is the idea that, in the past, there was some golden age when everything worked. This tragedy, this awful behaviour by the state, is a demonstration that that is not the case. We have huge problems of dysfunction in the way our state has worked over long periods of time. As the noble Baroness, Lady Finlay, said, addressing this fairly and justly, with compassion and care, could start to repair the relationship between the state and people.
I note the powerful speech of the noble Baroness, Lady Brinton, who, like all the speakers before her, has been very much a leader in this area. I come along modestly and add the Green Party’s support when I can. I thank the Minister for addressing the start of this debate with appropriate seriousness and recognising the sacrifice of families, campaigners and those who have been affected, who have demonstrated that campaigning works, in that we at least have a compensation scheme. But their experience also demonstrates that you cannot say, “We’ve won our fight, now we can get on with our lives”. People have to keep fighting and fighting and fighting. That is an unreasonable burden to put on people who have already fought for so much.
I want to pick up a couple of specific points, starting with the important contribution from the noble Lord, Lord Patten. It is considered bad form in your Lordships’ House to repeat, but I am going to repeat his demand: the Government surely have to be able to find figures to show how many people have died waiting for compensation. The figures are awful—around 3,000 people have been compensated out of 19,000 applications. We know that there must have been a lot of deaths. It cannot be beyond the capacity of the Government to give us that figure and demonstrate to the public that everyone can see clearly what is happening. This is about basic transparency.
There are many points to be made about what is wrong with what is happening now, and many of them have already been made. I pick two issues that the public would be astonished by if they were widely known. One is the fact that compensation payments are being eroded by inflation. The longer the state drags its feet, the less effective the money that people are getting to be able to get on with their lives. That is inappropriate and clearly wrong. The other point is that victims who have died must be treated in the same way as living victims. Bereaved families see the money immediately reduced as soon as someone dies, but they have died because of the terrible actions of the state. That cannot be considered in any way acceptable.
It is easy to get angry about this—your Lordships already have and will continue to do so. We have a new Government and a chance for a new start. Let us hope that this Government approach this with compassion, care and a realistic understanding that we have to restore trust in the state and in government. Indeed, in this current age of shocks, with so many health and other threats approaching, we need to ensure that there is trust in the medical profession. This compensation scheme can go some way to restoring that.
Baroness Davies of Devonport (Con)
My Lords, my mum Sheila Davies died from liver cancer in 2017 after a long battle with hepatitis. She did not drink, she never smoked, and I think she went out of the country a grand total of three times. In fact, she rarely ventured outside Plymouth, where she worked in the MoD. She worked all her life, paid her taxes, bought up my twin brothers as a single parent, and did not moan. In fact, she was the most stoic, brave, and principled woman I know.
In the late 1970s, she had a gall bladder operation in Devonport Hospital, Plymouth. The gallstones they removed filled a jam jar. I remember her shaking them at me at the kitchen table. I was 15. She was on warfarin at the time and therefore needed a blood transfusion, which was standard practice for a large-wound operation, and she thought nothing of it. As with so many hepatitis cases, it took 20 years before the symptoms started to really impact her life. From that moment, she was on a cocktail of tablets, drugs and endless tests, yet she never stopped working through colds, flu and infections. She never explained to us children what she had, so she dealt with that fear all alone. I rang her best friend at the weekend to check, and my mum had never told her either, such was the shame and stigma that came with the diagnosis of hepatitis and HIV, which meant that so many people were shunned and abandoned. Whole families of haemophiliacs died while communities ostracised them. In many cases, it was women who picked up the burden of care.
Mum had a consultant who seemed to get things under control, but when he went back to Australia, things went downhill very fast. It was only at the very end when my brother had to take my mum to appointments that the truth started to come out. I then took her to Harley Street after she decided to pay herself to see a specialist. I sat there while he told her that, had she been referred six months earlier, he could have done something to help her, but, apart from experimental drugs that would put her in bed for six months and prolong her life just a little, there was nothing he could now do. It was too late. It felt like the third time that our NHS had let her down. I talked her out of spending her last three months in bed as she was a fiercely independent woman, and three months later she died. We got her back home to the house that she lived in for 50 years and she was surrounded by her family.
My story is not unique. There are many families with worse ones. Mum died in February 2017, just months before the first real transparency on contaminated blood. We found out that blood was obtained not only from American prisons but from prisons in the UK, such as Dartmoor, which might well have been the prison that supplied the blood to hospitals in Plymouth. It had not been screened. Worse, it was batched, long after many countries had changed their practice. Some hospitals and trusts, as we have heard, and I know, deliberately destroyed records.
My mum died before she could talk about what she had endured. She was terrified that it might come out that she had hep C because I was in the public eye. Getting records together has been nigh on impossible. I have tried, with my influence, which is better than most, and still we have had little help. There are many poor families out there who are really struggling with just getting the information.
Last weekend, I spent time online with people who have lived this nightmare. I hope the Minister, who I know genuinely wants to help, will find some of their expertise useful. They mentioned awareness of and equality for hep B sufferers and the importance of understanding how hep B can be a trigger, especially for haemophiliacs who have multi-conditions. Claim managers were suggested who can target claim types, so they can build up expertise and knowledge in specialist areas. They call for help with record gathering, an emphasis on genuine testimony, speeding up compensation, especially for those who are dying, working closely with charities and support groups which have been dealing with victims for decades, and support and recognition for the many women who were given contaminated blood during childbirth and were told not to have any more children.
This was beyond a terrible, avoidable mistake, and there was the even bigger disgrace of the cover-up. A minimum of 30,000 people were affected, and there were 3,000 premature deaths. Hundreds of thousands of families affected by this contaminated blood scandal have been ignored for so many years. All Governments have to own their part and all Members of this House and the other place need to come together to establish justice and transparency for all victims. We must take lessons from what has gone on in the past and do no harm going forward.
Baroness Featherstone (LD)
My Lords, it is an honour to follow the noble Baroness. When one hears stories directly like that, they have an impact. I am so sorry for the noble Baroness’s loss. As ever, I have to declare my interest: one of my sister’s twin boys—my nephew, who was a haemophiliac—was infected with hepatitis C and died at the age of 35, leaving behind a 10 month-old baby daughter. I more than support the amendment in the name of the noble Baroness, Lady Brinton. Of course, although progress has been made, the implementation of the compensation scheme is still causing unnecessary and huge distress to too many victims and their families. Despite those of us who fight in this Chamber and raise the issues we are hearing about today about the affected and the infected, nothing fundamentally changes on those issues.
I begin by acknowledging this Minister’s personal commitment to this issue, which is appreciated. I know that much work has gone into establishing the compensation scheme, but the measure of success is not the creation of the scheme but the experience of those going through it. I want to raise three practical concerns today.
The first is the burden of evidence. Time and again, I hear from victims and bereaved families who are being asked to provide information that they have already supplied many times over many years to government departments, previous support schemes and the infected blood inquiry itself. Others are being asked for records dating back 40 or 50 years, which have long since disappeared. Surely, the starting point should be different. Where the state already holds the information or has previously accepted the facts, it should rely on its own records. After decades of fighting simply to be believed, people should not now feel that they are being asked to prove their case all over again.
My second concern is that these problems are not new. Representative organisations and affected individuals have been raising them consistently. The Government know about them; IBCA knows about them. We politicians have raised them often enough. Yet the same concerns continue to be raised over and over again, to no avail. The Government should and must expect the authority to learn quickly from claimants’ experience and to adapt its processes as problems emerge. If the same complaints continue to be heard month after month, something is plainly not working as it should.
My third point is about certainty. Many people still do not know when they are likely to be invited into the scheme, how long the process is expected to take or what stage their claim has reached. After decades of uncertainty, they deserve clear communication about what they can expect and when they can expect it.
I ask the Minister three questions. First, what further steps will the Government take to ensure that claimants are not repeatedly asked for information that the Government and other organisations already possess? Secondly, what assurances and examples can the Minister give the House that the Government are holding IBCA to account for resolving these recurring problems more quickly, and what punishment do they mete out to IBCA when it cannot answer? Thirdly, what further improvements will be made to communications with claimants, so they have a clear understanding of where they are in the process and when they can realistically expect decisions?
The hard decisions have already been taken. The inquiry established the truth. Parliament accepted the need for compensation. The money is there. The remaining task is to ensure that delivery matches the promises that have been made. That is what victims and families—those who have waited so long for justice—now deserve.
Lord Doyle (Non-Afl)
My Lords, it is a pleasure to follow the noble Baroness. I want to mention in particular the contribution from the noble Baroness, Lady Davies of Devonport, who set out so powerfully the real-world consequences of this scandal: not just the infections but the stigma that went with them. I thank her for doing that in this debate.
I thank the Minister for all her work on this; I know she has been a passionate advocate for change. I also want to use this debate to pay tribute also to the outgoing Paymaster General, Nick Thomas-Symonds, for all that he did to implement the inquiry’s recommendations. We now have an operational, funded compensation scheme that has paid out more than £2.5 billion. The difference this has made to victims is immeasurable. For many infected people, it has brought not only financial security but, after more than 40 years, the sense that they can begin to move forward with dignity and hope.
I pay tribute to the Terrence Higgins Trust for its tireless work in supporting people living with HIV and hepatitis C, and ensuring that victims’ voices have been heard, because there are a couple of outstanding issues for those co-infected with HIV and hepatitis C from contaminated blood and blood products that I want to mention today. The first regards interferon treatment.
Many people co-infected with HIV and hepatitis C could not wait for newer, safer treatments. Their health was deteriorating, HIV treatment options were limited and the pressure to act was immense. Interferon brought severe side-effects, repeated courses of therapy and additional suffering, compounded by HIV infection. The Government have said in the other place that those who suffered side-effects from interferon will receive an additional award and that each course of treatment will be recognised. That commitment is absolutely welcome but, from my reading of them, it is not explicitly in the regulations before us. Will the Minister confirm that this instrument will apply equally to all co-infected victims, including payments for each round of interferon treatment?
My second point concerns bereaved parents. I welcome the proposed exceptional loss uplift for bereaved partners, children, siblings and parents of children who died before 18, but there remains a gap. Many people infected with HIV never had the opportunity to build families of their own because of the stigma, discrimination and fear, and the expectation of an early death. Some died as adults while still being cared for by their parents. Those parents still suffered profound loss and should not be excluded simply because their child lived beyond their 18th birthday. I therefore ask the Minister to consider extending the 50% exceptional loss uplift to bereaved parents whose infected child died aged over 18 without a partner or children.
This scandal caused lifelong physical and psychological harm, compounded for those living with HIV by stigma, isolation and decades of uncertainty. This Government have made great strides towards justice: to rebuilding trust through the scheme and, with the passing of the duty of candour law, to dealing with other such scandals. I hope we can now take these final steps to ensure that everyone impacted receives the fairness, dignity and recognition they deserve.
Lord Pack (LD)
I am deeply conscious of how much knowledge many noble Lords have on this topic, knowledge that has often been tragically accumulated through their own personal experiences and those of their families. I pay tribute to those, both in this House and outside it, who have done so much to expose the scandal and to push for justice, including of course several noble Lords who have so eloquently spoken in this debate. If I may, I will briefly mention one other: my noble friend Lady Featherstone’s late sister, Della, who I remember as always such a smiling and happy person, but who was also such a formidable campaigner, driven by her own family’s tragedy.
Of course, one issue of widespread concern, as the noble Lord, Lord Patten, and the noble Baroness, Lady Bennett, in particular have touched on, is the speed with which compensation payments are being made and will be made, especially given the steady death toll, sadly, of victims of this tragedy. I very much welcomed the Government’s response when the Secondary Legislation Scrutiny Committee, of which I am a member, dug into this SI, confirming that they expect the “vast majority” of payments for infected people to be made by 2027 and for those affected by 2029.
Last year, however, the noble Baroness, Lady Anderson, the Minister, went a little further on 19 March, when she talked of IBCA’s
“aim to have made the majority of payments far ahead of those dates”.—[Official Report, 19/3/25; col. 1316.]
I hope she might be able to tell us what progress is being made on those more ambitious dates. When, for example, can we expect the majority of payments to be made by, and have those dates changed since the original profile of compensation spending was agreed with the Treasury?
However, even with the best possible answers on those points, it will still be several years before payments are concluded, so the fixed financial figures set in this statutory instrument and other related legislation will, as we have heard, continue to be eroded by inflation, reducing what people receive before everything is settled. I must admit that I found the Government’s explanation to the Secondary Legislation Scrutiny Committee for not uprating figures to cater for inflation to be a little puzzling, because it was a two-pronged justification, the first being that it
“would not be consistent with a tariff-based approach”,
and the second being that it would be “administratively burdensome”. I find that puzzling, because there are many other SIs that come through Parliament that appear to manage both those things. Conscious of time, I will mention only one.
The Armed Forces and Reserve Forces (Compensation Scheme) (Amendment) Order 2026 takes several financial numbers related to compensation that are fixed in legislation and updates them explicitly in response to those figures having been eroded by inflation over time. The Government’s Explanatory Memorandum also talks of plans to regularly review the relevant lump sum to uprate it in future in line with inflation. That is just one of many different examples of other schemes and compensation arrangements where the Government regularly update figures in line with inflation. They do not find it inconsistent with tariff-based approaches in those other areas, and they do not find it unnecessarily administratively burdensome.
I therefore hope the Minister can, if not necessarily promise future uprating to deal with inflation, at least set out a clear path to look further at this issue. This is not just an abstract matter of geeky maths and statistical detail; it goes to the heart of whether victims of this appalling tragedy will finally be properly treated and respected by the systems that govern us. I very much hope that the Minister will respond positively on those points and on the others that we have heard in this debate.
Baroness Finn (Con)
My Lords, before I speak to the Motion to approve these regulations and to the regret amendment in the name of the noble Baroness, Lady Brinton, I want to begin by reflecting on the courage and tenacity of all infected and affected victims of the infected blood scandal. They have shown immense strength in the course of their long campaign, and they deserve justice without delay. There is one point that ought to be made at the outset: the previous Minister for the Cabinet Office rightly placed great store by the delivery of infected blood compensation and repeatedly presented it as a central priority. Victims are now entitled to ask where it leaves them. Not only do they have to live with the uncertainty that inevitably accompanies a change of Government but the latest figures demonstrate that the pace and consistency of compensation payments remain well behind where they should be. After everything these families have endured, they should not be expected to endure yet more uncertainty about when justice will finally arrive.
I thank the Minister and the noble Baroness, Lady Brinton, both for their time and for putting the victims at the centre of their remarks. Our shared, cross-party objective of delivering justice for the victims is why we are having this debate, and we will continue to work constructively to maintain that consensus across the main parties. As the noble Baroness, Lady Brinton, notes in her amendment, we should recognise the progress made by the Government and the Infected Blood Compensation Authority since October 2025. The latest publicly available figures show that 3,358 people have received compensation. While that is welcome, there is still widespread concern about the pace of progress. The Hepatitis C Trust has said that compensation must be delivered faster, and that thousands of victims are still waiting even to be invited to claim compensation, let alone be paid what they are due.
There also remains a striking imbalance in who has received compensation to date. Living infected persons who have never received support comprise just 35 people—1% of the claims paid. A concerningly small number of affected people and those acting on behalf of a deceased infected person have received payments following their claims. When does the Minister anticipate a meaningful increase in the figures for those groups of victims?
On costs and compensation, the previous Government allocated £11.8 billion to fund infected blood compensation, but the National Audit Office now estimates the total expected payout to be £12.8 billion. What contingencies are being put in place to ensure that funds are available to pay compensation to all those who are eligible? Pace is not the only concern. A number of important issues remain unresolved, including but not limited to the disparity between compensation for living and deceased infected people and the injury award for unethical medical testing. I hope the Minister will be able to address those and other concerns when she responds to this debate. In doing so, will she set out what work is being done to support affected and infected people with their applications for compensation? We need a scheme that recognises the complexities of individual cases and takes care to give people tailored support.
I very much pay tribute to my noble friend Lady Davies of Devonport, who spoke so movingly of her experiences and her mother’s story. She and other noble Lords rightly highlighted the challenges faced by many families in obtaining the necessary records. This is another example of the need for tailored support for victims. Do the teams at IBCA have the skills to support families where records are difficult to access? What assessment has been made to ensure that IBCA has the necessary skills in place to deliver the best possible support for all victims? They and their families must come first. We will continue to work constructively with the Government to ensure that rapid progress is made.
Baroness Anderson of Stoke-on-Trent (Lab)
My Lords, before I start, I put on record that I am in awe of the noble Baroness, Lady Davies, and her speech. I can only imagine how difficult it was for her to stand up and do that. She demonstrates what we have all listened to on many occasions: the pain and heartbreak, and why we are actually here, because behind each statistic that is so easy for us to talk about there is a family still grieving for their loved one. We are so grateful that she and the noble Baroness, Lady Featherstone —I will call her my noble friend—are here to remind us every day of the realities. I also put on record my personal thanks to the noble Baroness, Lady Campbell, who is not able to be with us today. She makes sure that, every day, she speaks truth to power on behalf of everybody who is suffering. I thank all of them for doing so.
Many points have been raised. I am really aware that this is the first time I have done a timed SI and that this is such an emotive issue, so I may not be able to answer every point. As ever, I will reflect on Hansard and write, but I want to put a couple of things on record. When we discuss the issues of infected blood, we know that people are listening to us to make sure of what the Government are saying and that we are sticking with what we have promised, so I want to make sure of that too. In answer to a very important point raised by the noble Baroness, Lady Finn, I want to make it clear that the £11.8 billion allocated by the previous Chancellor of the Exchequer is neither a target nor a cap. I would also make every guarantee on behalf of the new Chancellor of the Exchequer that the money will be found if it needs to be found, but this is neither a target nor a cap.
The noble Baronesses, Lady Davies and Lady Featherstone, raised a range of specific recommendations. I would like to facilitate two meetings, if noble Lords wish to attend. One would be with the leadership of IBCA to go through some of the recommendations, some of which are about humanity and how we engage. I think it would be helpful for it to hear those stories. Another, again, would be with my officials. There is always an open door with my officials on the specifics that we face.
I think every Member of your Lordships’ House reflected that we are still dealing with a matter of national shame. This is a black mark that we still have to tackle. I very much echo the words of the noble Baroness, Lady Finlay: this is taxpayers’ money in recognition of an appalling state failure, and we need to get this right. I personally have hope for the way we are doing this. We had an option, and the tariff-based scheme was recommended as the fastest way of getting the money out of the door, because all the people we are trying to support have varying lives that are complicated and challenging, but we can definitely help support the majority.
I turn to some of the specifics that have been raised. Forgive me, I will speak quickly because I want the noble Baroness, Lady Brinton, to have as much time as possible at the end of the debate. IBCA’s prioritisation was raised by many Members of your Lordships’ House. IBCA prioritises claims based on recommendations from the Infected Blood Inquiry. Prioritisation lists differ slightly depending on the cohort, but I want to reassure noble Lords that those sadly nearing the end of life, aged 75 or over, are prioritised across the board, whether infected or affected.
Noble Lords will be aware that every affected claim has to be based on the assessment of an infected claim —a foundational claim to tie the two claims together. As per IBCA’s community update of 9 July, earlier this month, it has asked everyone registered as living infected, never compensated and nearing the end of their life to start their claim and is now contacting people with advanced liver disease. IBCA has asked everyone who has registered to make a deceased infected claim with a beneficiary of an estate who is nearing the end of their life to start their claim and is now contacting beneficiaries who are aged 75 or over. We are currently asking living affected people who are nearing the end of their life to start their claim and expect soon to have contacted everyone currently registered in this group. It will then contact people aged 75 or over to start the claim.
On IBCA’s staff training, raised by the noble Baroness, Lady Brinton, IBCA’s claim managers do indeed receive an initial three-week training, which includes the background on the infected blood scandal and the inquiry’s work and recommendations, so that everyone in the organisation understands the human stories behind their work. Staff receive specific trauma-informed training from a clinical psychologist to ensure that they can provide the best support possible to each person coming to IBCA. Claim managers meet members of the community during their training to ensure that they understand not just what happened but how it has impacted lives, and this continues throughout their employment.
The noble Baroness raised the long-term effects of interferon. These regulations will introduce a new higher level of award for infected people who were treated with interferon. The new level 2B core compensation award will provide more financial loss and care compensation for the full two years after treatment to anyone treated with interferon who would otherwise be receiving a level 2 award. For those on the level 3 or level 4 infection severity banding, the inquiry made no recommendations in relation to recognising the impact of interferon treatment for people who are already eligible for those awards. The technical expert group supported the view that level 3 compensation awards already account for the types of harms that people may have suffered as a result of treatment with interferon.
The noble Baroness, Lady Brinton, raised the most heartbreaking thing, which is the historic evidence of suicide. The Government looked at how to make the severe health condition award for psychiatric disorders more accessible and have a less intrusive ask for evidence. We examined using types of evidence, such as suicide, to qualify for the award. Imposing such a retraumatising requirement would place an unconscionable and egregious burden on families who have already endured decades of profound mental suffering. When designing any compensation scheme, the Government must ensure that no mechanism or award criteria inadvertently creates a risk to potentially vulnerable people. That is why we are progressing in the way that we are, but I will put that in writing to all noble Lords.
On the recognition of carers, I have also met and heard from many of the people whom noble Lords have. The care award is provided to people making a claim as an infected person or as the representative of a deceased infected person’s estate. This award is intended to compensate specifically for financial loss caused by the hours and the nature of care needed, but I am aware of the impact that that has had on some people who would not necessarily have received that through the estate.
The unethical research award amount has been raised with me many times, both in your Lordships’ House and outside. The Government took a great deal of care in determining the award values and the qualifying criteria for the cohort of people who were or may have been subjected to unethical research. This included obtaining advice from legal experts and considering the responses to the consultation. The published response to the consultation provides an analysis of the responses received. This award is intended to compensate people for the specific distress caused by discovering that they may have been subject to unethical research practices. The core route awards, such as the injury and social impact award, already compensate for the long-term physical and mental impact caused by someone’s infections.
I am aware that if I speak for much longer, the noble Baroness, Lady Brinton, will not have much time, so I will write on every other point raised—apologies. I put on record my thanks to every Member of your Lordships’ House who has ensured that this issue continues to get the hearing it deserves. I thank my incredible team, both my private office and my civil servants, for making sure that I am well informed and engaged on such an emotive issue, and that we are trying our very best to make sure we support the victims of one of the most egregious scandals in living memory.
Baroness Brinton (LD) [V]
My Lords, I thank the noble Baroness, Lady Davies of Devonport, for her very moving contribution about her mother’s own experience, reminding us of the consequences of stigma, hidden infections and diseases such as hepatitis not being identified, which meant that she could not be treated. I understand what it took for the noble Baroness to give that speech, but it was very powerful. I am sorry that the noble Baroness, Lady Campbell of Surbiton, cannot be here this afternoon, and I pay tribute to her many decades of campaigning for justice for victims of contaminated blood. My noble friend Lady Featherstone’s family’s experience was sobering for us all and a reminder of the real impact of this. I thank the noble Lord, Lord Patten, for his informed contribution, which stressed the urgency of resolving the many outstanding issues, and I am grateful to the Minister for responding to that.
The noble Baronesses, Lady Finlay and Lady Bennett, both spoke movingly about the bigger picture; we must not lose sight of that. The noble Lord, Lord Doyle, reminded us of the progress that has been made. I apologise that my speech did not talk much about progress—there has been some. My concern is what is still outstanding. The noble Lord, Lord Pack, made a very important point about inflation, which I hope the Minister can look at.
I thank the Minister for her measured and caring approach, as ever. This is something on which we all want to work together, but today’s debate has demonstrated that there remain urgent issues. I end by thanking all the victims and their families. I hope they are reassured by the cross-party support for them and their concerns. I hope the Minister will be able to improve payment times and remedy some of the many injustices in the scheme at the moment. In the meantime, I beg leave to withdraw my amendment to the Motion.