Infected Blood Compensation Scheme Regulations 2025

Motion to Approve

19:56:00

Moved by

That the draft Regulations laid before the House on 12 February be approved. Relevant document: 18th Report from the Secondary Legislation Scrutiny Committee (special attention drawn to the instrument)

My Lords, as today is my first time engaging publicly in your Lordships’ House on this hugely important issue, I hope noble Lords will allow me a moment to thank those whose tireless work brought us to this point, especially the noble Earl, Lord Howe, the noble Baroness, Lady Brinton, the noble Lord, Lord Ponsonby, and the noble Baroness, Lady Thornton, whose dedication ensured that the legislative framework for delivering compensation was established. I pay tribute to noble Lords across this Chamber who have ensured that the voices of people infected and affected remain at the centre of our debates, particularly the noble Baronesses, Lady Campbell and Lady Featherstone, who have been resolute in seeking justice for everyone so tragically impacted by this harrowing scandal. At the heart of this are countless people whose personal experiences and needs must always drive our actions. We must pay testament to those across the infected blood community, whose tenacious fight for justice has driven this work for so long. I hope that these regulations mark the next substantial step forward in finally getting compensation to those who have fought for so long. This Government recognise that those impacted by this heartbreaking tragedy understandably have limited trust in the state. The onus is on us to rebuild those relationships and support those impacted as they progress through the next chapter of their journey. This is an area of deep importance for me, and I am personally and deeply driven to make sure that the Government are moving this work forward in the right way. The infected blood scandal was a profound failure of the state. It is hard to conceive the scale of damage done and the incredible suffering of everyone impacted. The people impacted must remain at the forefront of our minds and we must do everything in our power to rectify this injustice, restore trust in the state and demonstrate that we will not allow for failures such as this to happen again. That is why we are going further than any other Government have gone before. In the Autumn Budget, we set aside £11.8 billion to compensate people who are infected and affected by the infected blood scandal, making it rightly one of the largest compensation schemes in our country’s history.

20:00:00

The regulations we are debating set out in full the infected blood compensation scheme. The compensation scheme was first established in August last year by regulations approved by this House. The scheme is tariff-based and provides compensation under both a core and a supplementary route. The 2024 regulations provided the Infected Blood Compensation Authority—IBCA—with the power to begin making payments to those who are infected and claiming compensation under the core route. Progress has already been made under these regulations. As of 14 March, 255 people have been invited to start their compensation claim and 40 have accepted their offers, totalling over £44 million. We recognise that there is much more to do, and the Cabinet Office continues to work closely with IBCA to ensure that it works as quickly as possible to deliver compensation to those for whom it is long overdue.

I turn to the regulations we are debating. Since August, we have further developed the details of the scheme. These regulations consolidate the 2024 regulations and extend the scheme to include people who are affected by the scandal. Those affected include the loved ones of people who are infected, defined in these regulations as partners, parents, children, siblings and, in some instances, carers. This is important progress towards making payments to the families of people impacted by the scandal, and I am sure that IBCA will begin making payments to people who are affected by the end of this year.

The regulations also establish the supplementary route for exceptional cases, where compensation under the core route was not considered sufficient. Under the supplementary route, there will be three supplementary awards for people who are infected and one additional supplementary award for people who are affected, should they be eligible. The supplementary awards for infected people include: an additional autonomy award, for cases in which someone was subject to unethical research; a severe health condition award for financial loss and care, for cases in which someone suffered from a specific rare health condition which is likely to result in greater care needs or impact an infected person’s ability to work; and an exceptional loss award for financial loss and care, for cases in which someone can evidence additional financial loss, most likely as a result of being a higher earner or having higher care costs due to their infection.

There is also a supplementary financial loss award for affected people. This will provide compensation where an affected person was financially dependent on an infected person at the time of their death and this dependency has not already been recognised through the core route. The supplementary route has a higher evidential requirement, as people who are claiming will need to demonstrate their circumstances to necessitate a higher compensation payment. The regulations also allow for people to return to the scheme should their condition worsen as a result of their infection, and to claim multiple awards in the devastating circumstances that they are both infected and affected, or affected multiple times over.

Before I move on, I want to acknowledge that these regulations amend a small mathematical error that was present in the 2024 regulations. This was a genuine technical error, but I want to be clear that we know that those already engaging with IBCA may be disheartened by this mistake. I want to take this opportunity to apologise to them directly. Anyone affected by this issue will receive all the compensation that they are due, and resolving this should not cause any delays to the rollout of compensation. The error itself is a result of the mathematical formula used to calculate someone’s financial loss and care award in the 2024 regulations. This means that some people who have been made an offer so far will have been offered slightly less than was intended. This will impact only a relatively small number of people who have received their offer of compensation from IBCA.

The draft 2025 regulations use a different process for calculating the compensation, for the sake of simplicity, and this change in formula had the practical consequence of correcting the mistake from the 2024 regulations prior to it being identified. We have identified a solution that ensures that nobody is negatively impacted. IBCA has reached out to claimants today, to both inform and, crucially, reassure them that no one will be worse off as a result of the change in calculation.

In addition to IBCA ensuring that everyone receives the correct amount of compensation, people who have been impacted will also receive a small additional ex gratia payment. I reassure your Lordships that steps have been taken quickly and the draft 2025 regulations have been reviewed thoroughly to ensure that this error has been properly addressed. Again, I wish to be clear that the Government apologise to those who have been impacted by this error. It is deeply regrettable and has been amended as quickly as possible. Furthermore, I inform Members of the House that a correction has been made to the draft 2025 statutory instrument since it was laid, to amend a minor typographical mistake in the listing.

Nothing can ever undo the decades of injustice, pain and suffering, yet with these regulations we are another step towards providing full and fair compensation to the people impacted by the infected blood scandal, who have already waited far too long for justice. We, as a Government and as a House, will not rest until we see this delivered, and we will work closely with IBCA to ensure that it prioritises providing payments quickly, efficiently and in a way that puts the people it is delivering for at the heart of its work. We want to ensure that compensation is delivered as swiftly and compassionately as possible to everyone who so greatly deserves it.

I am grateful to everybody who is participating tonight so that we can collectively deliver for the people who have been so cruelly impacted by this scandal. I look forward to hearing from all noble Lords about what we can do together to move this forward. I beg to move.

Amendment to the Motion

Moved by

At end insert “but this House regrets that the draft Infected Blood Compensation Scheme Regulations 2025 diverge from the proposals set out in the Infected Blood Inquiry Report and the Government’s response; introduce exclusions leading to inconsistent treatment of victims; downgrade some previously agreed awards; disregard expert advisory recommendations by imposing new evidence requirements for certain support scheme payments; and discriminate against carers and those receiving care through the proposed care awards framework.”

I thank the infected blood individuals and groups, including the Hepatitis C Trust, the Haemophilia Society and Tainted Blood, and many others, both infected and affected, who have been in touch with me about their concerns around the direction of the compensation scheme. The fact is that four people are dying every week, and over 3,000 have died so far. Only a handful of victims have had full payment, which means that there is still much to do, and, as we will hear, much that is worrying about the direction of the compensation scheme. Above all, I believe we all stand with the infected and affected victims, and join them in wanting to see Sir Brian Langstaff’s recommendations delivered. Until all claimants have received what is due, they are being revictimised by this appalling dereliction of duty by the state, for over 50 years and counting. I thank the Minister and her officials for last week’s meeting with a number of noble Lords about the regulation and for answering queries on the actual implementation of the infected blood compensation scheme. I thank her for her call today to let me know about the error. There is one person who is not with us tonight, and that is the noble Baroness, Lady Campbell of Surbiton, who has real personal experience of infected blood. In your Lordships’ House, we miss her voice of experience, as well as her expertise. Given that she cannot come out in the evenings because of her oxygen, I hope that, in future, the officials will consider when we timetable debates such as this, so that she can join us. We echo her frustration with the failure of IBCA to quickly and appropriately compensate eligible people. I want to make it clear right from the start that I will not call a vote on my regret amendment. There are two reasons for that. First, I do not want to delay the regulation. Too many eligible people are horrified to hear that only one person had received their compensation by the end of 2024 and that only a very few affected people—perhaps also single numbers—will receive their compensation by December 2025. Secondly, many of the issues I want to raise are about the way that the scheme is being operated, both by IBCA and through the Cabinet Office’s involvement. When I laid the amendment, I talked to some of those affected. I am particularly grateful to them, because they showed me that there were problems with elements of the regulation. Since it was laid, more has come to light about what is happening in the complex and invisible web of arrangements for the infected blood compensation scheme—so much so that I am hearing that any good will and trust that had started to develop last year, as the first regulations were laid, appears to have been trashed again. Indeed, last week, Sir Brian Langstaff took the extremely rare action, as the chair of a public inquiry, of telling the Government that he is so concerned with what he is hearing that he will be issuing an extra report on the speed and details of the implementation of the scheme. My first question to the Minister is this: what action will the Government be taking to address the concerns of Sir Brian? I recognise that he has not published his comments yet, but we know they are coming and soon. Will she undertake that Parliament should have a proper debate on the problems and issues raised by the infected and affected victims and groups, as well as on the updates that were promised during the passage of the Victims and Prisoners Act which set up IBCA last year? Last year, we were told that the second set of regulations would cover principally arrangements just for affected victims, because the regulation laid and commenced last August, while Parliament was in recess, covered only infected victims. The Secondary Legislation Scrutiny Committee in its 18th report notes that the Explanatory Memorandum on this second set is much easier to understand than the first—so, thank you officials, that is helpful. However, it takes as read the restate and expand of the first regulations into the ones we are seeing today. In our meeting with the Minister last week, I said that I was not clear about what has changed from that first regulation, and I am very grateful for the paper that was sent through today. However, had we not raised it, I fear that realistic scrutiny of the regulation on such a long SI would have been difficult. I am very grateful to the Minister for her introduction this evening, especially as she has explained the error in the formula in the first regulation, which has to date resulted in less compensation being paid to around 50 claimants. However, there follows from that the question of whether there are any other hidden elements of restate and expand that have resulted in the wrong amount of compensation being allocated. In the regret amendment, I set out a handful of different concerns that I have heard directly from infected and affected victims and groups. These are not minor and often diverge from Sir Brian’s interim and final inquiry report, Sir Robert Francis’s report and even some expert group reports. I am particularly grateful to the umbrella group of victims and organisations which passed me a copy of its November 2024 paper sent to IBCA and to the Cabinet Office setting out in full detail—21 pages’ worth— where things are not going right. I understand that this has been sent also to Sir Brian Langstaff and will be part of the evidence on his website. The group’s concern falls into four areas, and I will broadly follow them with what I am saying, with examples that I am aware of to demonstrate the problem. It says that there are 57 issues still to resolve—and, clearly, I am not going to cover anywhere near a small amount of them. The context and approach of Getting It Right sets out how the IB community feels that both the Cabinet Office and IBCA are assuming that the community is in step with the way things are progressing. However, when concerns are expressed about divergence from original principles, for example, that makes things not fit for purpose and/or unworkable, or that delays some from accessing compensation, then that is fundamentally not acceptable. For example, during the passage of the Victims and Prisoners Bill last year, Ministers—such as the noble Earl, Lord Howe, sitting very close to me in the House—said that everything would happen at pace for all victims. Only after the Bill became law did it become clear that there are now two classes of victims: infected, because they had the consequence of the first regulation last August, and affected, who definitely feel that they are now not as much of a priority. That has caused consternation. The unfinished business section of the Getting It Right report has elements, again, that highlight divergence with Sir Brian’s inquiry report and recommendations. The problem is that IBCA is not truly independent. To be frank, it is not even the arm’s-length body as set out in the Act which the previous Government were so keen to set up. Why? It has staff, including senior staff, seconded from the Cabinet Office—surely still a conflict of interest there—as well as staff from HMRC, who are trained specifically never to invite a claim. So, I ask the Minister: why is the community not involved in the drafting of training courses for new staff seconded from elsewhere with other practice? It is vital that IBCA is independent of the Cabinet Office, otherwise it cannot be arm’s-length. Also, as was much discussed during the Victims and Prisoners Bill, it needs to be accountable to Parliament. So, what will the Government do to ensure that IBCA is truly independent of government? The son of a victim has written to me to say that the draft regulations do not take account of what the expert advisory group says and, worse still, are trying to attach conditions that are specifically not recommended to be attached to those victims already in the special category mechanism, or SCM. Rather, the recommendations explicitly state that new applicants should have to show one of the six so-called rare conditions. Victims already accepted as SCM recipients, as recommended by the expert advisory group, will have their past care and losses calculated automatically on the basis of the enhanced supplementary route, irrespective now of the much narrower so-called six severe health conditions. The problem is that this is not true for everybody. My Front-Bench portfolio covers all the current inquiries and compensation schemes. Rebecca Hilsenrath, the parliamentary ombudsman, published a blunt report about Windrush that says: “Our report found people who had applied for compensation were being wrongly denied the money they were owed. We found recurrent reasons for this, suggesting these were not one-off issues but systemic problems”. She also thought it would be useful to provide lessons for public bodies starting to offer compensation to people affected by the Post Office Horizon and infected blood scandals.

20:15:00

There are already similar problems with the Post Office Horizon scheme, which your Lordships’ House has debated, including lesser amounts than the tariff offered and much frustration. Now, six months into this scheme, it appears that the same problems are appearing again. Have the Minister and her fellow Cabinet Office Ministers read the ombudsman report on Windrush? If they have, have they used it as a yardstick to measure the progress of the infected blood compensation scheme?

I turn now to some specific examples relating to the text of the regret amendment. There are two issues where claimants have suddenly discovered that they are not being treated despite 30 years of IB scheme development and six years of Sir Brian’s inquiry and report. The first is the tariff discrimination between those infected with HIV and hepatitis. It is correct that the awful consequences of infection with HIV are fully recognised. However, those affected by hepatitis are being treated completely differently. Worse, the Government have adopted retrogressive hepatitis impact assessment measures that concentrate only on the state of the liver. The expert group has therefore ignored considerable detriments caused by extra hepatic harms, including harsh antiviral treatment regimes. The affected individuals excluded from the first regulations have now discovered that they are being treated as what can be described only as second-class claimants, with years before most of them are paid.

The tariff amounts that carers receive should be reconsidered and revised upwards. To deny 25% of compensation to non-family carers because they were not professionals is outrageous. Talk to the parents and non-family carers of these infected children; they were trained way beyond what normal people would do. One of them has written to me to say that there was a carers’ panel at IBCA on 28 January this year. Of the six carers who attended, only one received support payments from the schemes, and it was clear that the majority of carers from the support schemes are having 25% deducted from their proposed care award. It is argued that they cared non-gratuitously and therefore need tax and national insurance deducted. However, despite many carers being short on NI stamps because they cared, the money is not being credited to their national insurance accounts, so family carers are not allowed to claim for loss of income, career damage or personal injury, and are being given 25% less than the minimum wage for being put through hell on earth caring for an infected blood victim. One person says:

“My sister is a professional nurse, and she says she’s never seen anything like the degree of suffering”

that she witnessed their father endure,

“and she also developed PTSD”.

I will end by talking about the confusion about how people will be selected to be invited to claim. In November last year, the communications advisory panel had “how to select people to be invited to claim” as one of its three agenda items. After that, claimants heard nothing further until it gave the order of which groups would be called. There is still nothing about how people will be selected within those groups. This not only is adding to everyone’s stress but raises some really troubling questions because, as one of the victims tells me, the affected claims die with them.

The framework document published by IBCA last week revealed that the “bulk”—its word—of infected people will be paid by 2027. The bulk of affected will have to wait until 2029. This is not “at pace”, which all Ministers said repeatedly last year in the previous Government and in this one. It is totally unacceptable.

To conclude, last summer, the then Prime Minister, Rishi Sunak, said compensation should be paid “whatever it costs”. Despite those encouraging words and his apology on behalf of the country, his outgoing Government did not set aside money, so it is encouraging that the Treasury has now set aside £12 billion. But “whatever it costs” is also about the way assessments are carried out and how claimants are treated, and moving “at pace” must mean a real speeding-up of the process. I started by saying that four people are dying a week. For them, there is no end to this tragedy.

Will the Minister agree to meet those who are interested on this issue and speaking tonight to discuss the detail of the Getting It Right paper, and how this Government will continue to inform victims, as well as Parliament? I beg to move.

My Lords, I listened with great care to what the noble Baroness, Lady Brinton, said, and I should begin by saying I agree with all the words of regret in her amendment. It seems clear to me that, in recent responses to public inquiries, delay, obfuscation, the rewriting and scrambling of old regulations and the belated—“Oh, good heavens, we didn’t notice that!”—introduction of new regulations are leading to the most painful experiences. Earlier this month, it was not on infected blood but on people in the Post Office who have suffered terribly by delays. There was a postmistress—forgive me, I do not remember her name—who was lamenting the fact that she had been promised compensation, apologies and then suddenly her husband, who was also a postmaster, died. Earlier in March, she was lamenting that justice had not been done because justice had been delayed. I know it is not meant to be like that and I do not intend to say that people are malicious, but, when I attended the infected blood inquiry for a bit and, in particular, listened to Sir Brian Langstaff, the chairman, who did such a tip-top job in bringing forward his recommendations, he had a very clear charge sheet for how it was all to be done—but it has not happened. He must regret that very much, and I think that those who are due compensation and an apology must be lamenting. Of course, many of them are quite advanced in years and, as the years pass, people die and, just like with the postmaster husband of the unfortunate postmistress widow to whom I have just referred, with great respect, I fear that we are going to see more people at risk of not getting their compensation or their apology and dying because of these new regulations that have been brought in, I believe unnecessarily. I congratulate the noble Baroness, Lady Brinton, on what she has done. I have two requests only. They are pointed requests, but I make no apology for that. The first is to ask the Minister by when—specifically, in which month, in which year—she expects all compensation for the persons infected by blood whom we are talking about to have been completed. If we do not have that, we have no measure of whether these regulations are effective. Equally, could she give me her best estimate, in a letter, perhaps, in her normal courteous way, if she cannot manage it tonight, for understandable reasons, of how long it will take to complete, to the nearest month and the nearest year, for all those carers who also seem to be horribly caught up in this endemic delay, following Sir Brian Langstaff’s recommendations which are now growing old, as people themselves are growing old?

My Lords, I am so grateful to my noble friend Lady Brinton for bringing this regret amendment. I know that the Government are trying very hard to get the regulations right, but there are so many concerns about a variety of issues, many of which were raised by my noble friend. I speak to the Government on behalf of my own family. I am sure that, by now, most of your Lordships will know that my nephew, one of my sister’s twin boys and a haemophiliac, having been infected with hepatitis C, died aged 35, leaving his 10 month-old baby daughter. Yesterday, it was 13 years since his death. I speak also, obviously, on behalf of all infected and affected people. We are incredibly worried. I repeat this every time I speak, not because I want to keep on going on about it but to emphasise that this is not just about financial management; this was people’s lives. I saw my sister and her husband devastated. I saw Jake, Nick’s twin, devastated. His daughter will never know him. Everyone who was affected by the infected blood contamination scandal has such terrible stories to tell. It seemed, after Sir Brian Langstaff had done such an amazing job, that the nation, the previous Government and this Government got it, finally. However, following all the hope that was raised, what is playing out is an exacerbation of the fears around what is happening. As always, I pay tribute to the noble Baroness, Lady May, for instigating the inquiry in the first place. It took 35 or 40 years before that happened, and I think that what she did was wonderful. All those infected and affected will be listening to or reading this debate—because they hang on every word that we say in Parliament—in hope and desperation that some answer to their prayers is coming, after all their suffering. There are, as I said, many concerns, including around the complexity and lack of clarity. The Secondary Legislation Scrutiny Committee highlighted that the regulations are “overly technical” and lack essential information, including details on application procedures, processing times, payment schedules, assessment criteria and the estimated number of eligible individuals. Those omissions hinder both public understanding and parliamentary scrutiny. That is the regulations themselves. I know the Government are producing a number of things to illustrate how the regulations will work, to make things easier and more accessible, but the regulations themselves are not accessible. There is massive upset and anxiety about delayed compensation payments. Despite the establishment of the Infected Blood Compensation Authority to expedite and manage the process, progress has been beyond slow. As of December 2024—at least on the figures I have, which are slightly different from those of my noble friend Lady Brinton—only 10 out of approximately 4,000 victims had received any compensation. This has led to frustration and anxiety among victims and campaigners, especially considering the urgency due to, as the noble Lord said, the advancing age and health conditions of many of the affected individuals. There is also concern, as was raised, about the disparities in compensation between hepatitis C victims and HIV victims. Legal experts have raised concerns that the proposed scheme continues to perpetuate these disparities. Specifically, the financial loss component appears to favour HIV patients over HCV patients, despite both groups enduring severe health consequences. This ongoing inequity has been a long-standing issue. I come now to the burden of proof challenges. The regulations place the onus on applicants to provide evidence of their infection resulting from NHS treatments between 1970 and 1991. Given the passage of time, obviously many medical records have been lost or destroyed, making it difficult for victims or their families to substantiate their claims. This requirement could unjustly exclude eligible individuals from receiving appropriate compensation. I would have thought that, given everyone has a GP, it is not that hard to get confirmation of these things, perhaps without the documents that are officially being required—everyone who has been affected or infected has a medical history. Administrative delays and additional documentation requirements have led to some victims and their families experiencing unexpected delays due to new documentation demands. For instance, interim compensation payments of £100,000 were expected before Christmas 2024, and they were put on hold for certain bereaved families, pending submission of additional legal documents. These unforeseen requirements have caused further distress among those affected.

20:30:00

There has been woefully insufficient engagement with victims and campaigners, who feel that the Government have not adequately involved them in the development and implementation of the scheme, which has led to a feeling of marginalisation and distrust towards the authorities overseeing the process. It sends them right back to the years when they came as supplicants to successive Governments, begging them, and were fobbed off with the most obscene excuses.

That leads me on to the composition of IBCA, as was raised. I understand from campaigners that IBCA has a number of Treasury-originating officials in it, which is not what I would consider arm’s length. Addressing these concerns is crucial to ensure that the scheme operates fairly, transparently and efficiently, providing justice and relief to all victims of the infected blood scandal.

I highly recommend that the Minister, all the officials, and all the members of IBCA, if they have not already, read the Getting It Right document produced by various charities, groups and individuals concerned with infected blood compensation, which was published in November 2024. It was compiled by people who really know most about what happened, what is needed and what is currently wrong with the regulations. They should also read the briefing from the Hepatitis C Trust and the Haemophilia Society, titled Infected Blood Compensation Scheme Regulations 2025.

Concerns have been so widespread about the way this is happening that Sir Brian Langstaff, the brilliant chair of the inquiry, has announced that he will reactivate the Infected Blood Inquiry to produce a report examining the timeliness and adequacy of the Government’s report on compensation.

I know that officials and Ministers want to get this right and are trying truly hard, but it is not there yet. Rather than just bludgeon their way through with things that are not adequate, they must listen and take note and make changes according to those who really know. Please listen to the infected and the affected; they are the most knowledgeable. They can guide us to omissions, lack of timeliness or concerns, so that we can correct any errors, eliminate omissions, speed up things and remove roadblocks.

There has been enough suffering and loss, and enough fighting for justice. Do not ignore the messages that my noble friend Lady Brinton and I, and others, have brought to this regret amendment tonight. Do not ignore the charities and campaigners and victims who bring forward the details of what still needs more work. Please make changes.

My Lords, sadly, this regret amendment was needed, and I congratulate the noble Baroness, Lady Brinton, on tabling it and on having this debate. It is regrettable that we have to have the debate at this time of night, because the noble Baroness, Lady Campbell, who has been intimately involved in every way with this, has been unable to participate. I met her earlier today to go through things that we might cover in the debate tonight. I knew her first husband and I saw, although second hand, how much he went through, and how much she went through when he died, and how much she has gone through in bereavement. The new regulations are indeed very difficult and complex. I am most grateful to the Minister for meeting us earlier in the week and sending through the document which tries to explain the regulations in a tabulated form. Having tried to read the regulations, I find them incredibly difficult to work through. I echo the concern that has already been stated about the difference between the way that those with hepatitis and those with HIV are being treated, because hepatitis C is absolutely devastating. The delays, unfortunately, mean that the confidence that was beginning to be built up after the inquiry is being rapidly eroded. There was an expectation that the Infected Blood Compensation Authority would be completely independent and judge-led, and would report to government, and yet there is a sense that it is somehow being controlled by the Cabinet Office. That means that those who are both infected victims and affected victims are feeling increasingly let down again. I am grateful to the Minister for having telephoned us immediately that the error that was made became evident. Errors happen, and it is terribly important that people own up immediately and do what they can to correct them, but it does not mean the delays are acceptable at all. There was an expectation that there would be two independent panels, one legal and one medical. The expert groups seems to have been appointed rapidly before the iterative process involving those victims had happened at all. There is a real need for transparency over the tariffs, how they have been weighted and how they have been designed. I would like confirmation on the record from the Minister tonight that everyone subject to unethical research will not be required to produce any further evidence—the places are listed in the report. I seek assurance that no benefits—not PIP nor any other benefit—will be affected adversely by any compensation. There is a real need to rebuild trust as rapidly as possible. Any further delays will carry on eroding that trust. I am particularly concerned about those who have been severely mentally traumatised by caring for a relative. The regulations refer, under the heading “Severe psychiatric conditions”, to a person who has received “consultant-led secondary mental health treatment for a period of at least 6 months, or … assessment or treatment as an inpatient”. I really worry that that might be very difficult for some people if they had been cared for by an extremely good general practitioner in the community who has had enhanced training. I worry that, somehow, because they have been managed in the community and have not pushed for admission—or their family has not—they will inadvertently be excluded from compensation, without going back to those records to see the level of competence of the doctor who was looking after them at the time. I am sure that there will be other aspects in these regulations that one could find, but that was one that leapt out at me. There is a whole section on the offsetting of awards, which I really could not understand—I tried to read it three times. We must be grateful to the Secondary Legislation Scrutiny Committee, which has looked at the report and drawn it to the attention of the House. Although the committee has commented that a wide range of evidence will be acceptable, there is a real difficulty when unremunerated care has been provided by a family member or friend to an infected person. How can they prove what they were doing and how much care they were providing? The other difficulty is that there will be some people who die during the process of compensation being awarded. Clarity over how that will be handled will be very important. My last question for the Minister is: how will IBCA decide which individuals to invite to claim first from their particular group? How will that be rolled out and, again, how will those processes be transparent? Those who have not been called are left hanging in limbo. I am grateful to the Minister for the effort she has put in to communicate with us over this. This is such a terrible situation that has been ongoing. The only way to manage it now is to try to speed up processes, with transparency and involving those who have been affected so they can really understand what is happening. We should not do it behind closed doors.

My Lords, there are moments in history when the machinery of the state fails its people so gravely that it leaves scars on the national conscience. The infected blood scandal is one such moment: a tragedy measured not only in lives lost but in decades of suffering, neglect and injustice. In 2017, my noble friend Lady May of Maidenhead recognised this failure and announced a full statutory inquiry. I pay particular tribute to the tireless work of the noble Baronesses, Lady Campbell of Surbiton, Lady Featherstone, Lady Brinton and Lady Finlay. It was a watershed moment and an acknowledgement, at last, that the victims of this scandal had been failed by the very institutions meant to protect them, and from that moment there was consensus across all parties that justice must be done and that compensation must be fair, comprehensive and delivered without delay. That is why, when the Chancellor, Rachel Reeves, came to office, she made clear that the Government would get on with it. As she wrote, while shadow Chancellor, in her letter to Jeremy Hunt in December 2023: “For the victims, time matters. It is estimated that every four days someone affected by infected blood dies”. She also noted: “This is not a party political issue. All of us have a responsibility to act now to address this historic wrong. That includes working together on a cross-party basis”. That spirit of cross-party consensus was evident in the final months of the last Government. John Glen worked closely with Nick Thomas-Symonds, as did my noble friend Lord Howe with the noble Lord, Lord Ponsonby, to ensure agreement on the key elements of the compensation framework. It was a moment of unity, a recognition that justice must be shaped not by political considerations but by the needs of those who have suffered. I greatly appreciate the engagement of the Minister, to which the noble Baronesses, Lady Brinton and Lady Finlay, have referred. We all share that commitment: the commitment that those affected must finally receive the justice, recognition and compensation they deserve. The final report of the Infected Blood Inquiry, so ably chaired by Sir Brian Langstaff, was eventually published on 20 May 2024, and the Government committed to compensate victims in line with the report’s recommendations. The Infected Blood Compensation Authority, IBCA, led by Sir Robert Francis, was set up as an arm’s-length body to administer the compensation scheme. Clear understandings were reached at that time between both Government and Opposition Benches, both in this House and in the other place, that Sir Brian’s recommendations would be implemented in full. There is much to welcome in the Government’s commitment to £11.8 billion in funding, and in its acceptance that compensation must be delivered without further delay. However, it is with considerable regret that the Government have placed these draft regulations before the House. Victims’ groups and campaigners, including the Haemophilia Society, the Hepatitis C Trust and many others, have raised concerns that key elements of Sir Brian Langstaff’s recommendations have not been fully implemented. As the regret amendment from by the noble Baroness, Lady Brinton, sets out, the object and effect of these regulations appear to be to alter substantially the scope of victims’ eligibility for compensation, the evidential burdens they are expected to satisfy to avail themselves of compensation, and the quantum of compensation to be awarded to some of those victims who are within scope. We must therefore ask whether these regulations are delivering the fair and comprehensive scheme that the inquiry envisioned. Do they uphold the proposals set out in the infected blood inquiry report and the Government’s response or do they instead introduce exclusions that lead to inconsistent treatment of victims, downgrade previously agreed awards, disregard expert advisory recommendations by imposing new evidence requirements for certain support scheme payments and discriminate against carers and those receiving care through the proposed care awards framework?

20:45:00

This is not a policy area I have worked on previously, but I have met campaigners who have raised their concerns with me. They have raised concerns that the IBCA lacks sufficient independence from government and the discretion to consider atypical personal or health impacts, such as infertility. They are uncertain about how claims will be assessed, particularly for those whose suffering does not fit neatly into predefined categories. Some have also questioned the transparency of the process by which medical conditions were recognised under the supplementary route. Others argue that the burden of proof for psychological impact claims is too high and that the long-term effects of interferon treatment are not adequately reflected in compensation sums.

Meanwhile, there are worries that changes to the severe health criteria could lead to individuals previously accepted under the special category mechanism being denied support and that partners of those registered on support schemes will lose 75% of their partner’s payments if bereaved after 31 March 2025. These concerns deserve answers. If the Government believe that these fears are unfounded, can the Minister offer reassurance? If not, will the Government commit to working with campaigners and experts to ensure that these regulations are fit for purpose?

There is also the issue of transparency. The Government have committed £11.8 billion to the scheme. Can the Minister tell the House whether this is still the Government’s best estimate of the costs associated with the compensation scheme? Have the Government published a “should cost” model? Will they update the House on what that model said and, given the uncertainties about the number of future claimants, will the Government share their calculations with the OBR?

Finally, while we welcome the fact that the IBCA has begun making payments to infected individuals, the Government’s update of 12 February 2025 acknowledges that payments to affected individuals will not begin until later this year. Can the Minister confirm the precise date when these payments will commence and, as my noble friend Lord Patten highlighted, when they will be complete?

I am aware that last week the infected blood inquiry set out its intention to publish an additional report. This is a moment for unity in the face of one of the gravest failures of the British state. The infected blood scandal demands not just words of sympathy but a compensation scheme that truly delivers justice. We owe the victims and their families nothing less.

My Lords, I am grateful to all noble Lords who have spoken in this debate. As with previous debates on infected blood, this has been a thoughtful, important and, I hope, constructive debate, with noble Lords ensuring that the voice of people infected and affected remains at the centre of all we do. I am committed to carrying forward this work swiftly and compassionately. I will work with Members across the House to ensure that I can achieve that, to help build back trust with the infected blood community, who have felt overlooked and disregarded for many years. On a personal level, that is my starting point and I will do everything I can. The onus is on us to do that, not on them. Noble Lords have raised many points that demonstrate the importance of getting this right, and I am grateful to those who attended our recent meeting to provide some clarity on some of these difficult and detailed issues. I will revert to some of the points raised momentarily. Compensation must be not only fair and comprehensive but simple enough to deliver quickly without diminishing the individual harm that each person has faced. This is not a straightforward task. The recommendations of the infected blood inquiry, Sir Robert Francis, and the advice of the infected blood inquiry response expert group have been critical to reaching this point. There is no amount of financial compensation that can make up for the pain and suffering that victims of this scandal have faced, and the Government recognise that. We must now focus on supporting the IBCA to provide compensation as swiftly and as compassionately as possible, and I hope these regulations will help to do that. I turn to the points raised by noble Lords. I start by apologising that the noble Baroness, Lady Campbell, is not with us today. She is much missed. Her voice is powerful on all issues related to infected blood and many other issues related to disability. I will ensure that the appropriate authorities reflect on the issue that stopped her attending today. As noble Lords who have raised it will be aware, I spoke to her today and I have committed to meet her personally to move forward. I must ask noble Lords to bear with me because lots of questions were raised. If I do not answer them all, I will reflect on Hansard and write accordingly. I want to get as much on the record as possible, because I am aware that members of the infected blood community do not live and breathe what happens in our Library but will be watching here tonight, so I will endeavour to answer as many questions as possible. I will start with the Getting It Right document that has been highlighted this evening. I am aware that a number of key representatives wrote to the Minister for the Cabinet Office last year; I have read the paperwork. I want to reassure noble Lords that this paperwork was received by the Cabinet Office on 19 November and on 20 December the Minister for the Cabinet Office responded fully. I made sure that the Paymaster-General was happy for us to share his detailed response, and I will write to noble Lords in due course with what has been outlined for each of the issues that they have raised. With regards to the request from the noble Baroness, Lady Brinton, to meet all Members present to discuss that in detail, I am more than happy to facilitate that meeting in the coming days. Many noble Lords raised the announcement made last week that the infected blood inquiry would remain open. For everybody who attended and watched the incredibly painful testimony that was given, the fact that the infected blood inquiry and the work of Sir Brian Langstaff continue is something that I personally welcome. As difficult as this is, it is incredibly important. As was seen in the response he received on 20 May, he is a figure genuinely trusted by those who participate, and his ongoing involvement can be only a force for good. We acknowledge that the infected blood inquiry intends to produce a further report. We are committed to co-operating fully with the inquiry and acting on its recommendations. We remain determined to deliver justice for the victims of the infected blood scandal. With regard to IBCA independence, which was raised by several noble Lords, not least by the noble Baronesses, Lady Brinton, Lady Featherstone and Lady Finlay, I want to reassure noble Lords that IBCA is an operationally independent arm’s-length body established by noble Lords during the passage of the Victim and Prisoners Bill. On 10 March, the framework document for IBCA was published. The document provides clarity between the role of the Cabinet Office as sponsor department and of IBCA as an independent arm’s-length body. IBCA has operational independence from the Government, with its role being to deliver the compensation scheme to the victims of this scandal. The Cabinet Office’s involvement in the development of IBCA is necessary as the Government had stewardship over the money allocated for the scheme. As for government officials being seconded, IBCA has begun operations staffed by civil servants so that we could create it as quickly as possible, but with a clear intent that staff will be employed directly by IBCA as soon as possible. Noble Lords will appreciate that there are HR policies and systems which must be in place before IBCA is able directly to employ people. We were determined this should not slow down the delivery of compensation. IBCA is clear about its independence, which is why I can give an update on its figures, but I cannot speak for IBCA—I find myself in a very strange position this evening, given some of the questions raised. I will come back to the question from the noble Baroness about training; I will give an answer later in my response. The noble Baronesses, Lady Brinton and Lady Finlay, raised the issue of hepatitis C and HIV severity bands. On the tariff rates for hepatitis C, the impact of hepatitis infection can range from very mild to very severe, including liver failure and death. The expert group provided the Government with clinical advice on the distinctions between these impacts. This meant that we could set severity bands for hepatitis infections based on clear clinical markers. This means that where someone’s experience of hepatitis has been more severe, whether it is historic or in the present day, they receive more compensation. The expert group recommended using a single severity band for those infected with HIV. Very sadly, most people infected with HIV due to infected blood have already passed away, and in most cases those deaths were as a result of their infection. Those who have survived will continue to be severely impacted by their infection. It was the view of the expert group that it would be disproportionately complex to break down the HIV category into different bands. I turn to the estate claims for care awards, which several noble Lords raised, especially the noble Baroness, Lady Brinton. I am so sorry; the fact that I have a cold this evening, given that we are talking about something so serious, is far from ideal. I am genuinely sorry. There is nothing I can do about it. Where a person who would have been eligible to apply for the scheme as an infected person has died, the personal representative of the deceased person’s estate may apply for compensation on their behalf. Any decision on the provision of compensation would be for the beneficiary of the estate. The care award is one of the five awards that an infected person is eligible for. It provides compensation to recognise the cost of care that a person may have required as a result of their infection. The award is provided only to people making a claim as an infected person or to their estate. The infected person can take a decision on whether the award should be passed on to an affected person. An executor of a deceased infected person’s estate will be responsible for administering the estate as per the wishes of the infected person. That is in line with the advice from the expert group. Where a parent provided care for a child in their early years, and the child passed in adulthood and left their estate to a spouse or their own children when they sadly died, it would be for the beneficiary of the estate to make a decision on how the care award was allocated. This reflects the principle that it would not be right for the Government or IBCA to intervene or overrule the will of the person who has passed. However, in this example, under these regulations, a parent would also be able to claim compensation in their own right as an affected person. With regard to the order of IBCA invitations, as was highlighted by the SLSC report, every single person entitled to compensation is unique, with their own set of experiences. I know that people have waited too long already, and IBCA wants to ensure that its service will work for everyone as it designs and builds it. Given the scale and complexity of this national tragedy, it does not currently have a mechanism to prioritise individual claims based on personal circumstances, but that is something it is seeking to develop. On the question about the bulk of payments to infected people by the end of 2027 and by the end of 2029, I have an answer for both the noble Baroness, Lady Brinton, and the noble Lord, Lord Patten. The statutory instrument outlines an option for those people who are newly diagnosed. They will have six years to claim, so I cannot give your Lordships a date when that will close; it will have to remain open as we are seeing secondary infections and intergenerational infections, while, heartbreakingly, some people have contracted hepatitis C in the last 30 or 40 years but they are only being diagnosed now because their symptoms are coming to an end. So I cannot give a date for the closure of the scheme. I will come on to the question of communications. The language is very difficult when we are talking about such an emotive and personal issue, and about people’s lives. We expect the overwhelming majority— I agree; I do not like the word “bulk”—of these cases to be met within the timeframes outlined, but the scheme will remain open for the foreseeable. The framework document set out the timelines agreed between IBCA and the Cabinet Office: the “bulk” of infected people are to be paid by the end of 2027, and I am going to say the “overwhelming majority” of affected people are to be paid by the end of 2029. In its recent newsletter to members of the infected blood community, IBCA set out its aim to have made the majority of payments far ahead of those dates. Several noble Lords touched on some of the challenges that other compensation schemes have had with rollout. To ensure that it has not been overwhelmed with applications and to make sure we get this right, IBCA is adopting a “test and learn” approach. That is why the numbers have been smaller, but we expect them to grow quickly in the coming months. The noble Baroness, Lady Featherstone, highlighted the fact that the numbers are for ever moving and mentioned the updated numbers and the disparity. The most recent numbers I have of people who have engaged with IBCA are that as of Friday 14 March, last week, 255 people have been invited to start their compensation claim, 214 have started the claim process, 63 offers of compensation have been made, totalling over £73 million, and 40 people have accepted their offers, with over £44 million paid in compensation. This means that IBCA has met its aim of inviting 250 people to begin a claim by March—that was the agreed number—and making sure that the process is working.

21:00:00

I want to touch on communication about the scheme, which was an underlying theme of several contributions. The Government recognise that there is a significant amount of information on the scheme, which can be challenging for people to understand, and I have had many conversations about this in recent days. In addition to the technical wording we have had to put in the SI, there are the Explanatory Memorandum and everything associated with this scheme. It is clear that this is very challenging for everybody to work their way through.

For this reason, in addition to the materials published on GOV.UK this month, the Government will publish a simplified explainer document that we hope will help people understand the details of this policy and what it means for them. On Monday, IBCA also published a compensation calculator for the infected core award. This will be extended to include the supplementary award and compensation for affected people soon after this is published. I hope this will be a useful tool for people to better understand the compensation available to them under the scheme. It is clear that the comms need to be so much more accessible, and I am reassured that IBCA recognises this and is seeking to remedy it. I take on board noble Lords’ feedback about the challenge of analysing these regulations as well.

As requested by the noble Baroness, Lady Finlay, I want to assure noble Lords for the record that eligibility for personal independence payments will not be affected where an applicant is eligible for compensation from IBCA. Personal independence payments are not means tested and therefore not impacted by an individual’s income or savings. Compensation payments made through the scheme will not adversely impact any benefits received by applicants, infected or affected.

There were lots of questions with regard to the unethical research award and the scope, and I hope noble Lords will indulge my time slightly. The noble Baroness, Lady Finlay, was absolutely right to raise this issue. The unethical research award was developed following a recommendation from Sir Robert Francis’s engagement exercise with the infected blood community in June last year. The Government accepted the recommendation in August and have developed the exact scope of this award since that point.

In December last year, the Government engaged with key representatives and organisations in the community on the eligibility criteria for the award, and we are grateful to each stakeholder who provided submissions and feedback. The Government carefully considered all the evidence provided and, as a result, extended the list of eligible centres now named in the regulations. The eligibility criteria for unethical research awards requires someone to show only that they were treated at one of the listed haemophilia centres—so they were a participant in one of Dr Craske’s studies or attended Lord Mayor Treloar College within a specific date range. We hope this means that everyone who should be able to claim this award can do so without needing to track down detailed evidence that in some cases, this number of years on, will be very difficult to find.

The noble Baroness, Lady Finn, asked about payments to affected people. Payments will begin this year, enabled by these regulations. As I said, when they end is a matter for ongoing engagement.

As I hope noble Lords recognise, there is a genuine desire to engage with the infected blood community. We are not going to get everything right, but we will endeavour to do that as much as we can. The Government are absolutely committed to engaging with the infected blood community. In recent months, both the Minister for the Cabinet Office and Cabinet Office officials have met with key representatives of the community to discuss the upcoming regulations.

These regulations have been informed by the community’s feedback through Sir Robert Francis’s engagement exercise and a target engagement exercise held in December on the scope of the unethical research award. We know there is a need to rebuild trust, and the Government will take on board feedback on what steps we need to take to do this. I look forward to working with all noble Lords across the House as we seek to do this.

I hope I have answered the question about the action the Government will take to address the infected blood inquiry’s concerns, but if not I will come back to the noble Baroness, Lady Brinton. She also asked specifically about the community not being involved in the training of IBCA staff. It is very difficult: it is obviously an arm’s-length organisation and we cannot have it both ways, but it is incredibly important that users are at the heart of compensation claim service. That is why IBCA has appointed three user consultants, who are members of the infected blood community. They will advise on how the authority’s processes and plans can be focused on those the needs of those applying for compensation. The issue of training is genuinely relevant and I hope that IBCA has listened to this debate—I am sure it has—and will pick that up.

The noble Baroness, Lady Brinton, asked whether there are any other areas behind restate and expand. I hope not. As I said in my opening speech, I recognise that the infected blood community will be disheartened to hear about that regrettable error. We genuinely believe that there are no further errors in this SI, but accountability and transparency are crucial for the Government—in the context of this scandal, they are imperative. This is why I want to reassure the House that these regulations have been fully scrutinised. I hope that acting so transparently about what we found will lead to some level of reassurance that we will take this seriously.

The noble Baroness, Lady Featherstone, raised the delays to interim payments due to the lack of official documents. We regret the issues some applicants found when making an application for an interim payment. When the issue was brought to our attention, we acted quickly with representatives of the infected blood community to put a solution in place for those impacted. We hope this will not happen again.

The noble Baroness, Lady Finn, raised the downgrading of compensation claims. I will address the concerns about compensation awards being downgraded or inconsistent. Noble Lords will recognise the importance of complete clarity and transparency on this issue, as we attempt to rebuild trust with people who have been so devastatingly impacted by the scandal. The compensation scheme’s tariffs have been developed based on expert advice. They were set out on GOV.UK prior to being established in regulations, and I assure the House that these amounts have not been reduced since they were published. I recognise that financial compensation will not be sufficient for many people to make up for the trauma they have faced as a result of this scandal, but it is my hope that, through this scheme, we can begin to provide closure for so many people who have needlessly suffered as a result of the continued failures of the state.

On the cost of the scheme, I want to reassure noble Lords, especially as this was raised by the noble Baroness, Lady Finn, that when we announced £11.8 billion in compensation for the infected and affected, that was neither a target nor a limit; it is to ensure that sufficient funds are available. If more money is required, this Government will seek to find the additional funds.

Before I finish, I want to put on record my thanks to the noble Baronesses, Lady Featherstone and Lady Finlay, for reminding us about the human cost of what we were talking about. In the detail and the language used when we talk about something so difficult, which has affected so many people, we need to be reminded of the human face. I thank both of them for highlighting their experiences—in the family of the noble Baroness, Lady Featherstone, and the noble Baroness, Lady Finlay, on behalf of the noble Baroness, Lady Campbell. It is incredibly important that we remember who we are talking about and why we are here.

While we are doing this, I also want to thank the officials who have supported this work and got us to this place. I thank noble Lords for their continued interest in this vital topic and welcome their continued collaboration. This is not a one-off SI; it is the latest chapter of such an appalling scandal. I know that we will spend many hours together in future weeks, months and years—inside the Chamber and outside—as we seek to bring justice to those who have been so devastatingly failed by the state.

Finally, we must bring our thoughts to the victims of this devastating scandal. The impact is felt deeply by families and individuals, and it has spanned decades. We must do everything we can to support those who are suffering and those who have lost loved ones. I hope these regulations provide comfort that the Government are taking steps to provide long-overdue justice to those who we have failed.

I am very grateful for the Minister’s comments and look forward to meeting her, along with other colleagues, and indeed to future sessions. As I said earlier, I will not detain the House any more at the moment. I beg leave to withdraw the amendment.

Amendment to the Motion withdrawn.

Motion agreed.