Infected Blood Compensation Scheme (Amendment) Regulations 2026

Motion to Approve

That the draft Regulations laid before the House on 18 June be approved.

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.

Amendment to the Motion

Moved by

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.”

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.

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.

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.

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.

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 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.