My Lords, almost five months have now passed since Sir Brian Langstaff published the final report of the infected blood inquiry on 20 May. I am grateful for this opportunity to debate the contents of that report, having now had the time to digest the contents of the very comprehensive report in full. I begin by paying tribute to Sir Brian and his team for the dedication and time that went into delivering this crucial report. The inquiry has handled an immensely challenging and sensitive issue with extreme care, and it is as a result of its commitment that the truth has finally been uncovered.
I also offer my gratitude to those in the infected blood community who came forward to participate in the inquiry. Their courage in doing so was immense; the Government and the nation owe them our utmost thanks.
I thank noble Lords who have played a prominent role in bringing the work to this point for the important contributions they have made in this House. In particular, I thank the noble Earl, Lord Howe, who, through the Victims and Prisoners Act, put in place the legislation that provides the necessary legal framework to establish the Infected Blood Compensation Authority and enables the set-up of the infected blood compensation scheme through regulations.
Sir Brian’s report laid bare the unforgivable failures of the state, and the deep-rooted and long-lasting trauma that has been inflicted on the victims of this scandal. I reiterate the unequivocal apology on behalf of this Government and Governments past. The infected blood scandal is a subject of national shame and nothing can ever fully right the wrongs done to those impacted.
Particularly distressing is the treatment of children who were subject to unethical medical research. Parents entrusted their children to these institutions and were assured that they were safe, only to be betrayed in the most shocking way. I cannot imagine the suffering that these families have endured. I found the descriptions in the section on people’s experiences deeply moving.
I recognise that an apology also means very little without action: without tangible plans for improvement. I hope that, over the course of this debate, I will be able to provide some reassurance to the community, and to your Lordships, that the Government have listened: that actions are being taken to ensure that nothing like this will ever happen again.
The inquiry’s findings are incredibly distressing to read and I thank Sir Brian for the unflinching honesty with which he delivers them in his report. The report states that
“what happened would not have happened if safety of the patient had been paramount throughout”.
This is a consistent theme throughout the report and remains apparent as the scandal evolved and different threats emerged. Patient safety consistently took a back seat to a variety of operational and reputational challenges for the Government. Indeed, Sir Brian’s report notes that, during the emergence of AIDS, the safety of the blood supply should have been the central focus. It should disturb all of us in your Lordships’ House that this was not the case.
My Lords, on an earlier occasion I took the opportunity to ask a couple of questions on the Statement. I also took the opportunity, just after the report had been published, to reiterate the apology and the expression of deep regret which I gave in the other place on 10 January 2011. What has been possible in the intervening months is to read much more of the report and to read some of the people’s experiences in volume 2, as the Minister said in her extremely helpful introduction to the debate. It makes one feel very strongly the sense of injustice, trauma and suffering that so many families will have experienced.
I cannot possibly deal with all the issues in the report but want to focus on one or two matters from my personal experience. I was Secretary of State in 2010-11 when we made a further review of the Skipton Fund and made what we regarded as, and understood at the time to be, very significant additions to the hardship payments and support offered to sufferers and their families. Since the report was published, it begs a very serious question about the culture inside government and inside the Civil Service, which the Minister rightly referred to in her comments on recommendation 5, so I should like to talk about those.
By my estimation, there are at least 16 Members of your Lordships’ House who held ministerial office and were responsible, in one form or another, for the decisions that were made on these issues. I have probably forgotten one or two, so there may be more than 16. Back in 2010, many noble Lords will recall that Lord Archer of Sandwell had undertaken his inquiry. We came into office as a coalition with the intention we had expressed in opposition: our view was that the Government should have been more transparent and open with the Archer inquiry. In any case, we had a responsibility then to respond to it. Indeed, because of a successful judicial review of the previous Government’s decision, we had to make a new decision on compensation. The Archer inquiry had recommended that we should issue compensation comparable to that which had been provided in Ireland. We reviewed that decision and decided not to do so.
My Lords, I want to talk about the affected rather than the infected. Listening to the noble Lord, Lord Lansley, sparked something in my memory of when, I believe, I came to him to talk about this. I had entirely forgotten about that, but I know I felt very disappointed after I met the noble Lord that day. I cannot remember why exactly, or what he said, so I will go back to my notes to find out.
As I said, I want to talk about the affected. The distinction between those who are infected and those who are affected, such as family members and caregivers, raises important ethical considerations regarding compensation. While pecuniary support addresses financial burdens, it does not really touch the broader impacts on affected individuals, and today I seek assurance on how the compensation for the affected is going to be assessed.
Sadly, as I have done each time I have spoken on the contaminated blood scandal, I have to declare an interest. My nephew, one of my sister’s twin boys, was a haemophiliac, was infected with hepatitis C, was exposed to CJD and died aged 35, leaving his partner and a baby daughter of 10 months.
I want to speak about the affected, the eligible persons, and would like the Minister to clarify and confirm if she can, on the record, that the affected will be compensated in the way Sir Brian Langstaff made clear that they should be in the inquiry’s conclusions. I am indebted to the Hepatitis C Trust. I do not know whether anyone else in this Chamber saw the webinar that it produced on the Government’s work, which is on its website. The trust is to be congratulated on how open and well publicised it is. It is a masterclass in what is quite a complicated compensation scheme to follow.
I am sure that the Minister agrees that it would be unforgivable and unconscionable at this stage, when families and victims have fought for decades to get the inquiry and were so relieved by its findings, if there were to be any retrenchment or effort to reduce the financial obligation by sidelining the affected. Sir Brian seemed concerned that this might be the case when he said of the Government’s offer and direction of travel for the affected:
My Lords, it is difficult to follow those personal recollections, but they bring home to us the suffering that so many people have experienced. I should, in the spirit of openness, say that I chaired the inquiry’s expert advisory group on public health and public administration and, in that capacity, I gave evidence to the inquiry. And with that experience, although it has been said already, I want to add my tribute to the way in which Sir Brian Langstaff chaired this inquiry. I have chaired a much smaller public inquiry and I know how difficult that was. I think he has achieved almost the impossible: a report that is forthright, clear, succinct and, as the Minister said, unflinchingly honest. But the thing that impressed me most of all was the relationship that he managed to build with the victims, their families and supporters, which was really quite remarkable.
Sadly, the performance of the inquiry contrasts sharply with the failings that it has exposed. While I am desperate to see the victims finally receive justice and compensation, today I want to focus on the need for us to follow up the inquiry by responding to the failings themselves. These represent, for me, a breakdown in public service standards which has been evident in too many cases in the recent past: in those regarding the Post Office, Grenfell, Windrush and Hillsborough. I do not think that these can any longer be dismissed as isolated incidents. There is a pattern, and the pattern besmirches the public service that we have known and that many of us have worked in for the whole of our lives.
The tragedy of infected blood claimed 3,000 lives. I sometimes feel that the world finds that horror so difficult to comprehend that we are not giving enough attention to how it happened. As Sir Brian makes clear, this could have been avoided, and that is the greatest tragedy of all. It could have been avoided if the state had behaved in the way in which the various codes of behaviour suggested that it should. Instead, it falsely reassured the public and patients—painful though that is to relate, it is important to. It failed to tell people of the risk of treatment. It deliberately destroyed documents. It failed to tell people that they were infected. It offered no meaningful apology or redress. It repeatedly used inaccurate, misleading and defensive lines to take. Finally, it responded to calls for a public inquiry by producing flawed, incomplete and unfair internal reports.
My Lords, I am grateful to the Minister for scheduling this vital debate and for this opportunity to contribute to it. I follow other noble Lords in expressing my gratitude to Sir Brian for his comprehensive report and my deep sorrow at the distress suffered by the infected and affected alike, with many cases ongoing.
I will touch briefly on three matters: candour, culture and compensation. The first is the duty of candour. As the noble Lord just said, it is sadly true that this scandal is part of a regrettable pattern, and I do not believe that we can yet be confident that the pattern is historic. I welcome the prospect of a law placing a duty of candour on public servants and authorities, but I hope that this law when introduced will be as ambitious as possible and place as much responsibility as possible on every citizen—not only those in the public sector—to be candid about failure, especially over a duty of care. Have the Government considered the widest possible application of a duty of candour?
The second is the issue of culture. The inquiry report identifies the need to address
“the unacceptable defensive culture prevalent across too much of the public sector”.
It recommends that the Government must be proactive in calling inquiries, saying that never again must campaigners have to wait for decades for an official, independent investigation to take place. But, as the Bishop of Sheffield, I am bound to note that an overly defensive culture has thus far inhibited a comprehensive inquiry into events at Orgreave in 1984. If the Government aspire to be proactive in calling for inquiries, there is an opportunity right there. Would the Minister be prepared to comment?
The third matter is compensation. After having waited decades for justice, the infected and the affected are, in many cases, still being made to wait for the full implementation of the compensation scheme. This is just wrong. When an inquiry is published as damning as this one, it is surely an overriding priority for compensation to be generous and prompt, and we are failing in that regard right now. It is a legal maxim that justice delayed is justice denied; it presumably follows that compensation delayed is compensation denied. Will the Minister please assure the House that due compensation will be paid without significant further delay?
My Lords, I am pleased to contribute to this debate because while I was the MP for Worsley and Eccles South I spoke a number of times on the NHS contaminated blood scandal, and was a member of the all-party group on contaminated blood, ably chaired by my right honourable friend Dame Diana Johnson MP. I acknowledge the work done by the all-party group and by noble Lords in keeping the issues and concerns of those infected or affected by this scandal so high on the political agenda. As an MP, I represented five families or individuals who were infected or affected by the NHS infected blood scandal. I know that they were helped by knowing that Members of Parliament and noble Lords were supporting their cause. I pay tribute to the powerful speech that we heard today from the noble Baroness, Lady Featherstone.
As my right honourable friend Nick Thomas-Symonds said in the Commons on 2 September:
“The infected blood scandal is a shameful mark on the British state, and those who have been impacted have waited far too long to receive financial redress and true recognition of their suffering. The inquiry’s report shed light on the trauma inflicted on thousands of people across the country. The voices of people who are infected and have been affected have gone unheard for far too long, which has compounded the trauma”.—[Official Report, Commons, 2/9/24; col. 74.]
I welcome the opening comments by my noble friend the Minister and the Labour Government’s confirmation that it is the intention to deliver a comprehensive compensation scheme at the earliest possible opportunity. I understand that the Government will bring forward another set of regulations to enable compensation for affected people and to provide supplementary awards, but there is no certainty around the dates for that, and I will raise a concern about this later.
My Lords, this is a matter almost too awful to contemplate, but I most heartily welcome the remarks of the Minister as she started the debate. I pay tribute to the exceptional work of Sir Brian Langstaff and his staff—I think we all share that sentiment. This is not a party-political matter; we all of us share responsibility.
“The NHS is the envy of the world.” That has been said so often you can hear those words still ringing around this old Chamber, but it has not been true for a very long time. The system of care and compassion that we created with such hope has gone horribly wrong. It has gone more than wrong; it is much worse than that. There have been
“systemic, collective and individual failures to deal ethically, appropriately and quickly”
with the infected blood scandal. Those terrible words are taken directly from Sir Brian’s report. Yet the main point I want to make follows the remarks in the pointed speech made by the noble Lord, Lord Bichard. It is that although this particular scandal is a national humiliation, it is far from unique. It is not just infected blood; it is the Post Office Horizon scandal—25 years and still going strong. It is the Hillsborough Stadium disaster, the Rotherham grooming scandal—that was more than three decades ago and is still not finished —and the Mull of Kintyre aviation disaster, which took nearly 20 years for the truth to be revealed. It is the Grenfell Tower calamity and, as we heard before this debate, the Afghan resettlement problem. There have been so many occasions where the public have been betrayed by their public servants.
Why does this happen? Sometimes it is through direct dishonesty, but more often perhaps because what we are dealing with is all a little uncomfortable—because it would rock the boat, because it is easier to leave the squidgy bits locked in the bottom drawer, because “We are the envy of the world and we know best”. It is the arrogance of the untouchables. The system operates on a self-serving motto: “Hold your nose, tick a box— job done, move on quickly and leave it all to someone else to clear up”. These disasters—infected blood, Horizon, Hillsborough and all the rest —were not accidents. Sir Brian makes that abundantly clear, and his conclusions are chilling. To paraphrase him, ordinary people—families, children—put their faith in the Government and in the system that was supposed to keep them safe, and we failed them.
My Lords, I think every speaker in this debate has paid enormous credit to the comprehensive and important report from Sir Brian Langstaff. There is so much weight in there in both the literal and the metaphorical sense. I particularly focus on paying extreme credit and respect to the individuals—the infected and the affected—who provided the heart of the testimony to Sir Brian’s report. They were talking about the most awful personal experiences. They were crucial to Sir Brian’s work and it is important that we focus on their contribution.
I thank the noble Baroness, Lady Twycross, for securing this debate, for her very clear introduction and for the tone which the Government have adopted on this, as indeed the previous Government did. This has been a very powerful debate but I want to pick up on a word used by the noble Lord, Lord Bichard: complacency. Following on from the noble Lord, Lord Dobbs, I have to ask about where the complacency has lain, and where the responsibility for the complacency has lain.
The noble Lord, Lord Dobbs, said to make public servants and officials responsible. He talked about the Civil Service. However, I think we have to ask where the leadership comes from. Ultimately, there is political responsibility. That is where responsibility is supposed to lie in our system. I am afraid I am going to say something that may feel uncomfortable to many sides of your Lordships’ House: the next time noble Lords feel tempted to use the phrase “world-leading” in a self-congratulatory tone, please ask, “Is this justified and are we using this as an excuse not to be better?” That is very often how it comes across. If that is the message delivered from the political leadership down to the people who are, after all, in your hands as a political leader when you are the Minister, what is it going to direct them to do? Please ask these questions. When people come to you and say that everything is fine but at the same time there are campaigners saying, “We have been mistreated; the state is not working here—it has not delivered for us”, please do not just take reassurance from the Civil Service, a quango, or whoever to say, “No, it is fine”. Please keep asking questions.
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The conclusions in the report of a cover-up driven by those in positions of power are sobering for us all. Individuals put their own self-interest before the safety of those they were supposed to serve. Sir Brian’s findings on the Government’s actions, and what he described as the “defensive culture” that led to many of the decisions that precipitated this scandal, are important to discuss. Indeed, Sir Brian highlights
“the consequences of civil servants and ministers adopting lines to take without sufficient reflection, when they were inaccurate, partial when they should have been qualified, had no proper evidential foundation … or made unrealistic claims that treatment had been the best it could be”.
A crucial example of this is the use of the phrase “no conclusive proof”. In volume 1 of the inquiry, we read that the first use of “no conclusive proof” appears in a line to take drafted for the then Prime Minister in 1983:
“It is important to put this in perspective: there is as yet no conclusive proof that AIDS has been transmitted from American blood products”.
The accompanying briefing note included the sentence:
“As yet there is no conclusive proof that AIDS is transmitted by blood as well as by homosexual contact but the evidence is suggestive that this is likely to be the case”.
Throughout the period of increased parliamentary and media scrutiny in 1983-84, this caveat was omitted. As Sir Brian states in his report:
“This line to take, whilst technically correct, was indefensible. It did not spell out the real risk. It gave false reassurance. It lacked candour and by not telling the whole truth was misleading … No minister challenged the ‘no conclusive proof’ line”.
His words paint a disturbing picture of a Government and a state more worried about the abundance of the blood supply than about the safety of the blood supply. There is a wealth of evidence uncovered by Sir Brian that points to the same thing: a state more focused on protecting itself than on protecting its people. This is utterly unacceptable.
I will move on to discussing Sir Brian’s recommendations and the progress we have made, but I stress that, in doing so, I do not want to minimise in any way the report’s findings. It is impossible to find the words that capture the severity and gravity of what is described in the report. It is incumbent on all of us to do what we can to provide justice to those impacted and ensure that no such disaster and scandal can ever be allowed to occur again.
I turn now to the 12 recommendations the inquiry makes in its report. The recommendations are wide-ranging and still being given full consideration by the Government. The Minister for the Cabinet Office will update Parliament on the progress made on considering and implementing each of the recommendations by the end of the year. I will briefly touch on some of the recommendations now, but I know that noble Lords will draw out others in the debate.
First, progress is being made on compensation. Over £1 billion has already been paid out in interim compensation, and the Government will pay out interim payments of £100,000 to the estates of the deceased people who were infected with contaminated blood or blood products and have not yet been recognised. This reflects the agreement reached in this House under the Victims and Prisoners Act, and I pay tribute to the many noble Lords who supported this important work and continue to be advocates for the infected blood community.
I am also pleased that, on 23 August, the Government laid the necessary legislation to enable the Infected Blood Compensation Authority to begin making payments to people who are infected, both living and deceased. The Government expect the Infected Blood Compensation Authority to begin payments under these regulations by the end of this year, and the authority is doing everything possible to be fully ready to deliver payments to as many people as possible, as soon as possible. Further regulations will be required for people who are affected. However, this will not impact the Government’s intention for the Infected Blood Compensation Authority to start making payments to people who are affected in 2025.
This progress came following a considerable engagement exercise undertaken by Sir Robert Francis KC —the interim chair of the Infected Blood Compensation Authority—in June this year with members of the infected blood community. In August, Sir Robert’s report was published, alongside a final report from the Infected Blood Inquiry response expert group, and a detailed policy document from the Cabinet Office setting out the design of the scheme, including case studies with examples of how this would work in practice.
Secondly, this Government are prioritising patient safety to ensure that the NHS treats people with the high quality and safe care that they deserve. Repeated inquiries and investigations have highlighted significant issues with patient safety, and this has contributed to a deterioration in public confidence. This is something that we must address. The Secretary of State for Health has already been clear that we will not tolerate NHS whistleblowers being silenced. A culture of openness and honesty is vital for ensuring patient safety. We want and need NHS staff to have the confidence to speak out and come forward if they have concerns.
I am pleased to say that, on recommendation 5—
“Ending the defensive culture in the Civil Service and government”—
work is under way across government to ensure that we reflect fully on Sir Brian’s words. In the King’s Speech opening this Parliament, the Government set out their commitment to bringing forward legislation to introduce a duty of candour for public authorities and public servants. The Prime Minister confirmed at the Labour Party conference that legislation on a duty of candour will be delivered by this Government. He confirmed that the duty will apply to public authorities and public servants and will include criminal sanctions. Work continues on the scope of the Bill. I know that colleagues across the House will have strong views on this, and I welcome the opportunity to come together and debate the Government’s proposals when the Bill is introduced.
The 12th and final of Sir Brian’s recommendations relates to giving effect to the recommendations of his report. I acknowledge the criticism that has been made, both by parliamentarians and others, on the failure of Governments to give proper regard to the recommendations of previous statutory inquiries. The Government are determined to ensure that no such criticism can be levelled against the response to Sir Brian’s report. I am aware that the updates provided on progress in my statement are by no means exhaustive, nor do they cover the full breadth of the recommendations laid out by the inquiry. As I said, my right honourable friend the Minister for the Cabinet Office will set out in more detail the Government’s response to the recommendations in a Statement in the other place by the end of this year.
Finally, I thank noble Lords for their understanding on the need for quick progress on the first set of regulations, made possible via the “made affirmative” procedure. To remain in force, the regulations must be debated and approved by Parliament by 23 October. I look forward to discussing this important matter further. As I am sure all noble Lords can agree, it is critical that the Infected Blood Compensation Authority retains the legal powers needed to begin making payments as soon as possible, enabled by these regulations. I am aware of the interest that this topic holds across the House, and I will hold a drop-in session for all noble Lords who may have specific questions on the Government’s progress.
Let us be in no doubt as to the importance of the report’s findings. I reiterate my thanks once again to Sir Brian and his team and to all those who came forward to share their stories, no matter how painful. The report lays bare the failure of the British state and the institutions in which people place their trust—institutions, indeed, in which we ask people to place their trust. That failure leaves an indelible stain on our nation, a mark of shame upon each and every person who allowed it to be perpetuated. Nothing that I can do or we can say will right the wrongs done to those infected and affected by this scandal. The best that we can do is to read, to reflect and to honour the courage of those impacted by this scandal and take the necessary action to ensure that something of this nature is never allowed to happen again in our country. I beg to move.
However, at that time we significantly increased the compensation; my noble friend Lord Howe on the Front Bench will have repeated that Statement in this House and will recall the widespread support that was given for what represented somewhere up to £130 million of additional support during the course of that Parliament. Anne Milton was my Minister in the ministerial team at that time. She undertook that review of the Skipton Fund, and in opposition and in government she had engaged very widely with the community and the beneficiaries of that fund, having spoken to very many of them. Anne Milton is now no longer in the other place and she is not here; she does not have a place where she can speak to these issues.
In volume 6 of the inquiry, which looks at the Government’s response to many of these events, towards the end of the section relating to the decisions we made at that time there is the following sentence expressing the view of the inquiry:
“What is … most disappointing about the response to the Archer Inquiry is the sense it leaves that government was looking to see what was the least that was required of it”.
That was absolutely not my experience, nor that of others in relation to the work that was being done by Ministers at that time. It certainly was not the view of the noble Baroness, Lady Primarolo, in the previous Administration—I know that to be a fact—nor that of Anne Milton. She was looking to do the most that we could do by way of adding to the hardship payments and the support we could provide, in what noble Lords will recall were very difficult financial circumstances, and at the time, in the other place and here, it was widely welcomed that we had done so.
I hope we will not misconstrue people’s intentions. We got things wrong and we did not know some things. Arguably, we were given inaccurate advice, particularly in relation to the question of there having been no finding of fault and what lay behind that. We are open to the accusation that we did not challenge it sufficiently, but I do not think we were ever looking to do the least that we could get away with; we were absolutely trying to achieve the most that we could for the sufferers and their families.
The second thing, in passing, is that all Ministers, pretty much at any moment, seem to have been accused of not having instituted a public inquiry. There may have been other occasions when a public inquiry would have made sense, but trying to do so in 2010, in the immediate wake of the Archer inquiry, probably made no sense. It would be good for inquiries, when they seek to look with the benefit of hindsight, to try to put themselves in the position of those who were making decisions at the time. It would not have made any sense to have instituted a public inquiry in circumstances where nobody was asking for one, we had just had the Archer inquiry and everybody was focused on our response to that. The issue simply did not arise in that sense.
I want to make just one more point, which is in any case the most important one. Reading earlier sections of which I was unaware, noble Lords will be aware of the frequency with which Ministers said that “at every stage” the Government
“has acted as swiftly as possible”,
or repeated the line taken many times over many years that
“the best available treatment … had been provided … in the light of medical knowledge at the time”,
whereas we now discover through the inquiry report that an official inside the Treasury said to the private office of the Chief Secretary at the time:
“I understand from DH that there are more than 500 sufferers”—
that is roughly half the total community at that time—
“who might in principle have contracted the virus after the stage at which hospitals might reasonably have been expected to use different forms of treatment”.
That links to the broader question of the stage at which it would have been possible to have secured greater self-sufficiency in the availability of blood products, to have found alternative forms of treatment and to have understood the nature of the risks and properly informed patients of them—which we now discover was not done. There is no evidence that it was done, even though it was asserted that it was.
We were very often in the position where we tried to make a decision and were in essence given two options: either we acknowledge fault or we say that there was no fault finding and that therefore compensation should not be available. The noble Lord, Lord Reid, is not in his place, but in 2003 he quite rightly—and, with the benefit of hindsight, very courageously—said, “That isn’t what it’s about; it’s about our moral responsibility”. There is an important space between fault on the one hand and no fault on the other, and that is where you have a responsibility for where harm occurs. The Government have a duty of care—I think this arose in the course of the litigation in 1989 and 1990—and will have breached that duty.
In the Government’s response to this inquiry, we need to think about finding a middle way between, on the one hand, no-fault compensation, and, on the other, restricting ourselves to providing support and compensation only in circumstances where fault has been found according to a test that parallels clinical negligence. The Government have responsibilities and a duty of care that is not limited to the best available treatment, according to medical knowledge at that time, in relation to that clinician. They have a wider responsibility; we need to find a more systematic way of understanding it and finding a place between those two extremes. The feeling that Ministers were always advised they had to choose between a test comparable to clinical negligence and purely ex gratia payments does not properly recognise the duty of care that they, and the Government, had to exercise in relation to those who had suffered as a result of the failures in treatment.
“A claim as a dependant focuses instead not upon the personal losses of the affected person, nor upon what they may have suffered emotionally, but upon the benefits the deceased would personally have provided in money, or money’s worth to the claimant as part of a family. A dependency claim is a derivative claim, rather than one which recognises the person as an individual”.
Can the Minister clarify whether Sir Brian is right in his concern about a dependence claim as described?
Families of the infected did not necessarily have any financial support from their deceased loved one or living victim, but their lives were fundamentally affected by the support that was needed over many years throughout their lives and prior to death, and the support needed after death by siblings, parents and children. The loss was never just financial. I saw the emotional toll on my sister and her husband, outside the fight that she carried on for decades to get the inquiry, to get justice. We—I speak of the community—all knew that there was a disgraceful cover-up and I fear that some in the Government and the Civil Service did, too.
I cannot begin to describe the burdens, trauma, emotional toll and fear, let alone the accommodations, challenges and costs, of having a child who not only was a spontaneous haemophiliac but was infected with hep C and exposed to CJD. To give an example of how terrible everything was, when he was told that he had been exposed to CJD—he was an older child at that point—there was no warning that he might be told that. His parents were not there. No one was invited to support him. There was no support given for what at that point was a terrifying prospect.
Because of the hep C, he had to go through most dreadful treatments. Now, thank goodness, there is a route for medical treatment of hep C, but the treatments that were in play then made him sick for months on end, totally disabling him from being able to work for long periods while he battled the hep C. The health service kept putting him on new treatments to try to cure the hep C. The last treatment that he tried failed. They all failed. It was the hep C and its treatment that killed him, not being a haemophiliac.
My sister and her husband, Nick’s parents, spent his life supporting him, getting him to and from hospital all the time, looking after him when necessary, soothing him in his distress, pain and fear. He was a musician, a guitarist, a brilliant songwriter and a singer in several bands. As I said, he left a partner and a 10 month-old baby girl. My sister and brother-in-law had to support her and the baby for many years, and not just financially. Thankfully, the Government seem to recognise the loss of a partner and she has now received the interim payment, but of course nothing can replace a partner and the loss of her daughter’s father.
Nick’s twin’s life and my sister and brother in law’s lives have—as with so many families in this community—been woven around supporting Nick when alive. Neve, who was a 10 month-old baby, is now a lovely young girl of 12, and she will never know her father. These are the affected: affected materially, emotionally, in terms of time and the loss of their right to a family life—everything.
I hope I am wrong and the Government are heeding all Sir Brian’s recommendations, because the Government forced families to provide care—in time, finance and emotional hell—by failing over decades to take responsibility for their malpractice, lies, deceit and cover-up. Over decades, there were hundreds of absolutely useless meetings where the infected and the affected were made to feel like supplicants, treated rudely and carelessly and fobbed off over and over again as if the Government could not wait to get rid of them. It would simply be another blow and another pushing away of responsibility if the Government proceeded to ignore Sir Brian on setting levels of compensation solely on dependence and derivatively.
So, yes, there was no pecuniary loss because Nick had supported his parents. It was nothing to do with that; he never supported his parents as he could barely work. That is not the point Sir Brian was making. This is about the costs in time and money and tears and loss and, post his death, the costs of the support that had to be given to his partner and baby daughter. It was nothing to do with any money that he might have been able to give them. So can the Minister put on the record that compensation will include consideration of all losses, emotional damage and the loss of the right to a family life by those who cared for their infected loved ones? Given the hours of care, the support given, the fight to try to get Nick cured of hep C, the terrible experimental treatments that tortured his body and his psyche, the worry, the heartbreak and the time, it is the least they can do. Pronouncing a duty of candour going forward is great, but it will not help the loved ones of those who care for or have cared for those infected.
I wonder whether the Government have any idea what an amazing day it was when Theresa May, now the noble Baroness, Lady May, announced that she had commissioned an inquiry after the decades of lies and obfuscation; it was an amazing change after decades of begging. How miraculous it was to have such a chair of the inquiry: the extraordinary, the just and the brilliant Sir Brian Langstaff. The findings of the inquiry gave the community, at last, a sense of justice in the uncovering of the truth and compensation for the pain and the fights and the consequences of the hideous scandal of giving haemophiliacs and others contaminated blood, knowing about it and covering it up. In France, Ministers went to prison. Are the Government looking at whether any criminal charges may be brought?
There is much good work and planning going on, and I congratulate the Government on what they are doing so far to deliver the compensation schemes —particularly for the infected, and their estates if they have passed on, and for their partners. However, thus far it has developed less clearly, as the Minister said, in terms of the affected. Their compensation must—as Sir Brian indicated—encompass the emotional and psychological impact; the time in care giving; the loss of quality of life; the anxiety; the hell of watching the torment and the pain; the need to recognise the suffering of those who love the infected; the loss of the right to a family life; and the years of worry and grief. I beg the Government: do not fall at that last hurdle; do not penny-pinch; do not obfuscate or wriggle out of true obligation. This really is the moment of reckoning.
The point is that these were not unfortunate mistakes. In too many cases they were deliberate attempts to mislead and obfuscate, and to protect the institutions of the state to the detriment of individual citizens. As Sir Brian says:
“It will be astonishing to anyone who reads this Report that these events could have happened in the UK”.
I add that it is particularly astonishing because we have long proclaimed, so proudly in the Nolan principles, the Civil Service Code and the Ministerial Code, our commitment to openness and integrity, and to honesty and fairness—all of which was so obviously absent in the many years during which the infected blood tragedy unfolded. The only conclusion I can draw is that the arrangements that we have in place to set and enforce the standards that we expect from public officials are inadequate. They are insufficient and need to be revisited. The only question for me is: what exactly are we going to do about it?
The inquiry report itself raises the possibility of a new duty of candour, which I have long supported. Rather more importantly, the Prime Minister, it seems, supports that. He recently announced, as the Minister said, that a Bill will be introduced in April next year to place that duty on the statute book. That Bill has become known as the Hillsborough law, but I see it being just as important as part of the response to the Infected Blood Inquiry. It is a mistake to link it to just one of the many recent tragedies.
The promised Bill will represent a step forward, but there are many questions that we need to ask, and I would like to pose some of them today. I know the Minister may not be able to answer them, so I hope she will pass them on to her Cabinet Office colleagues. The first question is: why is it taking so long to publish the draft of a Bill that is central to the way in which the state relates to its citizens and, therefore, central to the way in which this new Administration intend to govern? I know how difficult it is to produce and draft a Bill and White Papers, and I am surprised that it will have taken a year, since the publication of the inquiry report, to reach publication of a Bill.
Secondly, will the Bill be broad enough in scope to give statutory force to the behaviours currently set out in the Nolan principles and the various codes, or will the new duty apply only to occasions when officials give evidence to inquiries, in court cases or at judicial review requests? If that is what it is about, it will fail to introduce accountability for the failings that do not become the subject of such formal scrutiny but can still bring untold suffering to ordinary citizens.
Will the Bill be the subject of extensive pre-legislative scrutiny involving relevant campaign groups and ordinary members of the public? As I have said, this is about redefining the relationship between the state and individual citizens. We need to find a way to ensure that individual citizens have a chance to be involved.
Will the new Bill make it clear that the ultimate responsibility of any public official is not to the institution for which they work or even to Ministers? It is to members of the public. Until these and other questions are answered, we cannot be sure that the failings that Sir Brian identified will be effectively addressed. I am afraid that people are quite sceptical, given the experience of which we have heard that many have suffered down the years.
What we know today, as the inquiry report tells us, is that all is not well with the way in which the state and our public officials behave. It tells us that we have sometimes been too complacent about our standards in government in the UK. It reminds us that decent, ordinary, but ultimately powerless people can have their lives and the lives of their loved ones devastated by government and its agencies. If anything positive is to come out of this disaster, it should be this redefinition of the relationship between the state and individual citizens. The quicker we get to the crux of that, the better.
I want to reflect on the cases of my former constituents and the issues they raised with me. One former constituent was a child when they were infected with hepatitis C through contaminated blood products used at the Royal Manchester Children’s Hospital. The hepatitis C caused cirrhosis of the liver, and as an adult they were forced to use all their stage 2 compensation payment of £50,000 to pay for the treatment Harvoni. This was used to treat the virus load of hepatitis C but was not available for NHS patients, and there was uncertainty about whether it ever would become available to them. They should not have had to use their compensation to fund medical treatment for a virus they contracted while receiving NHS treatment as a child. I hope that there will be very specific redress for that.
The details of the cases I have had raised with me are heartbreaking. While no amount of money can compensate for the lives lost and the shattered futures, the compensation proposed now starts to represent a recognition of the scale of suffering that this scandal has caused, both to the infected and the affected.
I turn to the damage caused by the stigma surrounding the illnesses caused by contaminated blood. In his latest report, Sir Robert Francis confirms that psychosocial experts have reported that many of the impacts of this scandal have been suffered by both infected and affected people, including the distress caused to individuals and families by stigma. This is an important point, and it is the case that the gravity of the stigma experienced led to social isolation for many individuals and their families.
The father of a former constituent died in 1995 following treatment with infected factor 8. The constituent told me that she and her mother could never grieve properly for him because of the stigma surrounding HIV and AIDS at the time. In another case, Nora Worthington, mother of my former constituent Claire Dixon, was infected with HIV through a routine blood transfusion in 1982. She died of an AIDS-related illness in 1993. Claire Dixon told me that during this time her mother endured
“a catalogue of soul destroying, humiliating neglect and ultimately alienating experiences”.
The stigma and ignorance associated with HIV compelled Nora Worthington to protect those she loved and keep her diagnosis secret. It is distressing to note that, as Nora Worthington was a single parent, there has, up to now, been no payment of compensation to her daughter Claire and her brother Stephen. They have had a 31-year battle for justice for their mother.
It is positive that Sir Robert Francis’s report recommends that the social impact award for affected persons be reconsidered with an increased figure. However, there is concern among the affected community—we heard about this earlier in the report—that the regulations laid by the Government in August did not provide legislation for those affected, such as bereaved family members, to receive compensation, or in fact supplementary awards for those infected. I understand that a further SI is needed and that that will be laid in 2025 when parliamentary time allows, but this has caused uncertainty and worry. Can my noble friend the Minister tell us what progress has been made on this second set of regulations?
From this month, families will start to make applications through separate support schemes for interim payments of £100,000 to the eligible estates of those infected people who have died. Many of the eligible estates are those of people who died many years ago—often several decades ago. Applicants will require legal help in obtaining probate or letters of administration, and in dealing with deceased executors and other legal matters. Can my noble friend the Minister tell us whether funding for legal help will be available so that applicants are not expected to take on debt to fund their applications?
As campaigners, the Dixon family wanted to raise some extra concerns in the following points. First, they point out that some living infected individuals have been excluded from existing financial support schemes. The chronic hepatitis B infected and those infected with contaminated blood stocks after the September 1991 cut-off date have never received any financial support at all. They point out that despite this being a relatively small number of people, many of them are very ill as a direct result of contaminated blood, with conditions such as cirrhosis and cancer. Despite Sir Brian Langstaff’s recommendation in April 2023, a typical HBV-infected individual has lost around £100,000 in financial payments from support schemes, ahead of any compensation they may receive in future.
Secondly, the Dixons believe that carers are given insufficient financial recognition. They point out too that individuals with missing medical records are seriously at risk of not receiving justice from the Infected Blood Compensation Authority and having their compensation applications dismissed due to not having appropriate paperwork to prove that transfusions were given. I should say to my noble friend the Minister that it has seemed to me in dealing with some cases that quite a number of people are affected by missing medical records.
Lastly, the Dixons point out that the Infected Blood Compensation Authority is not currently seen by campaigners and those infected and affected as a true arm’s-length body, because it is staffed by officials seconded from the Cabinet Office. It is important we understand that, after so many years of being denied justice, there remains a lack of trust in government. The perception that it is now civil servants being tasked with designing the regulations and administering, assisting, operating and supervising the compensation schemes does not help with that. There should be the fullest consultation with those infected and affected to overcome such perceptions.
People infected and affected by contaminated blood have been through enough. It is imperative that the route to receiving compensation is as simple and sympathetic as possible. The payment of compensation to victims must be a recognition of the suffering of those people infected and affected by contaminated blood, which has been a shameful chapter for our NHS.
The priority of our public service system is no longer to serve the public; its priority has become to serve the system itself. This is an awful conclusion to reach but, on the basis of the evidence, it is an unavoidable conclusion. The Minister said that it is a mark of shame on everyone concerned. I would like to expand on the point made by the noble Baroness, Lady Featherstone, in her extremely powerful speech and ask the Minister: after all this time and all this suffering, how many public servants have been disciplined, demoted or dismissed for their part in this tragedy of infected blood? If the answer is none or that even after 50 years the system is somehow unable to come forward with any figures, that seems just another example of the system winning again.
I have no doubt that the Government’s fulsome apology is genuine, as was the fulsome apology given by the previous Government, and there is compensation. Justice requires compensation, but compensation will not be enough if we do not learn from this tragedy and prevent these scandals happening again. How do we make public servants properly responsible not just for the sins of commission but for the sins of omission—the grotesque lack of candour and honesty that Sir Brian highlighted? He suggests we should pass into law a duty of accountability and candour, and I am delighted that the Prime Minister has said that the Government intend to pick up this challenge. That was repeated by the Minister today. When will this proposal see the light of day—when will we go to the Bill? I notice that the noble Lord, Lord, Lord Bichard, suggested that it would be in April. I hope that it will be brought forward as a matter of urgency. Why do we need to wait until April for something which has been with us for so long? I understand that it is complicated but it is enormously important, otherwise all our hand-wringing will have gone to waste and all the wrongs will be repeated and the suffering of the little children will go on.
This new Government have an opportunity not just to put this terrible experience behind us—that really is not the point—but to put it to use to repair and rebuild what was once our great British establishment and the relationship between the state and the individual.
The headlines will be all about compensation—rightly so—but if we leave it just at that we will be in danger of simply ticking a box and moving on. The real change we need will require not just compensation but the courage to take on all the many vested interests that any legislation will encounter, and to see the job through.
The Government say that they will act to ensure that this kind of behaviour will never happen again and, in that objective at least, I wish them well.
Your Lordships’ House is very aware of this, so I am not going to go through it all, but Sir Brian Langstaff highlighted some absolutely wrong things that happened, such as the intentional destruction of documents, and the decision by the Government to use phrases such as “no conclusive proof” of a link between blood products and HIV to give false comfort and misrepresent risks. If there is one sentence from Sir Brian’s report that needs to be highlighted, it is this:
“This disaster was not an accident”.
Let us look at the facts. World Health Organization advice from the 1950s warned of the risks, as well as ways to minimise them, such as treating blood and restricting those who could donate.
A great deal has already been said, so I will not go over the same ground about the duty of candour and the so-called Hillsborough law report. But I will stress that I am confident your Lordships’ House will be focusing on the detail of that Bill and what we might be able to do to make it stronger. I look forward to doing that. I pick up again the words of the noble Lord, Lord Bichard, about the need for civic and public involvement, and true democracy in terms of making sure that Hillsborough law is as strong as it can possibly be.
The noble Baronesses, Lady Featherstone and Lady Keeley, both spoke about the delays to compensation for the affected, as opposed to the infected. I will make a couple of additional points. I am particularly drawing on the briefing from the campaign group Factor 8. Looking at the applications for interim payments of £100,000 to the eligible estates of those who died, I have a specific question for the Minister. Will the funding for legal help be available in advance to families who may be applying for it? Having to self-fund and claim the money later is obviously going to be utterly impossible for many.
We have covered a huge amount of ground in what has been a harrowing debate, so I will make two final points. First, many references have been made—I particularly pick up the point made by the right reverend Prelate the Bishop of Sheffield—to the Orgreave inquiry. Where is it? I repeat that question to the Minister. Secondly, when we think about the compensation, we have to think, in this context, about the Windrush scandal and the second scandal of how Windrush compensation has simply not worked out.
I do not think anyone has yet mentioned this, but the parallel has to be drawn with the issues raised in the so-called Cumberlege report, First Do No Harm—vaginal mesh, sodium valproate and Primodos. These were significantly after the events of the infected blood scandal; however, the same things kept happening again and again, and we have to highlight that.
I also want to highlight something not in the medical field. On 21 October I will be joining the Truth About Zane campaign, concerning the terrible death of seven year-old Zane Gbangbola. He was killed when flooding released toxic chemicals from a historic landfill site. There were total failures of government action after that. I hope we will hear positive news from the Government, in keeping with Sir Keir Starmer’s previous promise to hold an independent inquiry into Zane’s death. There are so many issues here.
I circle back to where I started. We have individual failures and structural failures, but let us not just blame the way things are structured. We also have to ask: why do we not have a state that functions for its people? We should be asking some very deep questions about the way this place, the other place and the whole British Government are structured.