Baroness Twycross
That this House takes note of the response to the Infected Blood Inquiry.
The Parliamentary Under-Secretary of State, Department for Culture, Media and Sport (Baroness Twycross) (Lab)
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.
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.
Lord Lansley (Con)
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.
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.
Baroness Featherstone (LD)
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:
“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.
Lord Bichard (CB)
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.
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.
The Lord Bishop of Sheffield
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?
Baroness Keeley (Lab)
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.
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.
Lord Dobbs (Con)
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.
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.
Baroness Bennett of Manor Castle (GP)
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.
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.
Baroness Berridge (Con)
My Lords, I too wish to recognise the tenacity and bravery of the many victims and their families who have suffered grievously due to receiving medical care that did them harm, contrary to the very first principles of medical ethics. This was compounded by the failure of many parts of the state to respond to their concerns, and the concealment of what happened to them. I was incredibly moved by the bravery of the noble Baroness, Lady Featherstone, in speaking about her family’s circumstances.
I recently served on the Select Committee of your Lordships’ House on the Inquiries Act, which called its recent report Public Inquiries: Enhancing Public Trust. This public inquiry, chaired by Sir Brian Langstaff, lasting six years and involving two interim reports—as well as the separate work on the compensation scheme by Sir Robert Francis, KC—cannot be subject to the criticism “too long” or “too costly”. It has enhanced public trust in this system that somewhere between the political and the justice systems lies public inquiries. When all else fails, it is a public inquiry that we need, but it took too long to get there, a point to which I will return. Although noble Lords will have the opportunity to debate fully the Select Committee’s report, some of our conclusions are relevant to, or overlap with, the inquiry’s work.
Keeping first things first, I turn to ensuring swift compensation for those infected and affected by infected blood and blood products, as well as the families of the deceased. I hope the Minister can confirm that the application system for interim payments of £100,000 for families of the deceased has actually opened this month, as the Paymaster-General said was the intention in the other place in July and September this year. Like the noble Baroness, Lady Keeley, I ask when the second set of statutory instruments will be laid, dealing with fuller compensation for those affected. It is important that Parliament considers that. I repeat that the main focus at this stage should be compensation, but I hope the Minister is able to provide details of progress on the many other recommendations Sir Brian made. As she noted, they are receiving careful consideration.
As the Select Committee on public inquiries heard so many times, even if His Majesty’s Government accept a public inquiry’s recommendations, whether they are then acted on is another matter. It can be remarkably hard to find out what progress is being made on each recommendation. As this inquiry recommended that the evidence and the report should remain accessible to the public, will this be where the public can access a simple timetable on the progress made? The public inquiry has admirably built confidence with victims and their families; enacting accepted recommendations is vital to retaining that trust.
Both the public inquiry and the Select Committee’s report recommend some kind of role for Parliament in holding the Government to account on progress in implementing the recommendations they have accepted. Sir Brian envisages this role to be that of the Commons’ Public Administration and Constitutional Affairs Committee and the Select Committee of your Lordships’ House—a new Joint Select Committee.
In the other place, the Paymaster-General did not seem entirely clear about accepting that there would be some role for Parliament to play in future, so can the Minister please confirm that, in principle, Parliament will have a role? Time, human energy and money have been well spent here, but how His Majesty’s Government will be held to account on the recommendations is not clear. Please let us not ask more of the victims and their families in that regard.
If a good public inquiry like this is the answer when all else is failing, how do we get there quicker? As the right reverend Prelate said, justice delayed is justice denied—but it also enormously compounds the personal trauma. Noble Lords who served with me on the Select Committee will not be surprised to hear me mention how affected I was by the evidence of Bill Wright, the co-chair of Haemophilia Scotland. The Scottish Parliament was first asked for a public inquiry in 1999, and it took a quarter of a century until the infected blood inquiry reported. Mr Wright also said:
“Some of the people coming into inquiries will be completely broken; some will be highly resilient”.
It is obvious that victims having to go through lengthy campaigns such as those the noble Baroness, Lady Featherstone, outlined in order to get an inquiry compounds the damage and breaks some of them—if the original harm has not already done so.
Again, Sir Brian and the Select Committee see a role here for Parliament, and I would be grateful if the noble Baroness could outline His Majesty’s Government’s view of this. I am aware that the noble Baroness may have to write to me, but when there are so many public inquiries now happening, it seems highly unusual that Parliament does not yet have a more formal role.
Although it is another matter that might need a letter, there are a number of recommendations that are more constitutional in nature—another specialism of your Lordships’ House. These include recommendations such as:
“Ending the defensive culture in the Civil Service and government … a statutory duty of accountability on senior civil servants for the candour and completeness of advice given to Permanent Secretaries and Ministers”,
and that:
“The Government should consider the extent to which Ministers should be subject to a duty beyond their current duty to Parliament under the Ministerial Code”.
I note that the noble Lord, Lord Bichard, commented on this.
While the recommendations might ordinarily be a matter just for the Cabinet Secretary, and maybe the Minister for the Cabinet Office, such conclusions by Sir Brian in such a landmark report on such wide-scale failure of the state call for more in-depth consideration. The Select Committee was often told of the culture of candour in the aviation industry, where apparently mistakes are reported and people are not cowed by fear of the consequences for their own employment. How has it achieved that culture? I hope to see a humble attitude from His Majesty’s Government in seeking advice from other industries, perhaps from the Institute for Government—one of the few bodies that can talk to Ministers while in office—and maybe from the Committee on Standards in Public Life.
Does everyone, from junior officials to even Secretaries of State, know where they can discreetly obtain confidential ethics advice when something just does not feel right but everyone seems to think it is okay? I recall my time as a barrister. From very early on, the induction is that you have a phone number to get hold of a King’s Counsel confidentially, at short notice, if in the heat of a trial you have an ethics concern on which you need advice. Why are Ministers not also so equipped? This is particularly important for Ministers and special advisers who, due to the nature of their appointment and of how they can be dismissed, seem to be outside any of the protections of the whistleblowers legislation. Can the Minister confirm for the record that “public servants” for the duty of candour legislation will include Ministers of the Crown?
Finally, I return to the first priority: compensation. We heard in the Select Committee that when a public inquiry has been held, those lessons are not passed on to the next public inquiry. I hope that all the expertise of Sir Robert Francis is not lost, but along with all noble Lords I also hope that we will never have to use his expertise again.
Lord Jones (Lab)
My Lords, it is good to hear the compassionate remarks of the noble Baroness, Lady Berridge. I thank the Minister for her committed and comprehensive speech and wish her well in her ministerial life ahead. I declare that I have answered a questionnaire concerning the inquiry.
I recollect a mother. She was dignified, and clearly worried. It was a weekly constituency surgery, just one of 50 a year for those 31 Commons years. We were in the working men’s club in a tired, long-gone Great Western Railway community. It was a great barn of a place. Warm sunlight was lighting up the dancing dust particles above the wooden floor that creaked as my constituent advanced towards my table. “My sons—it’s my sons. Both of them. It’s horrible. My sons need help”. Those were her first, urgent, whispered words. “My boys are in danger. It is a tragedy. It’s both of them; it’s so unfair. They are haemophiliacs—both of them are”.
This woman was bespectacled and had gone to the trouble of wearing her costume best. She was twisting her handkerchief, which was brightly embroidered. I detected a slight waft of her fragrance. Her breathing had become tight and her blue eyes behind the glass were heavily moistened. This was an ordeal for her, and I had to be more than sympathetic. “They need blood. They need good blood. Now they’ve been given poisoned blood. No—it’s contaminated blood”. These dreadful words were jerked out in between troubled breaths. Her interview was an ordeal, a torment. I felt greatly disadvantaged by her whispered passion. One’s duty was to be receptive always, but this was so personal. When the interviewer is engulfed by a fellow citizen’s deep feeling, one wants to give more than polite attention. Was I capable of reassuring this emblematic, supercharged motherhood?
This stressed woman of quality was twisting her handkerchief this way and that as she poured out her worries and her scorn for the failed blood intruded into her sons’ veins. They were not young. They were at risk. They had always had it rough, and now this. It was more than she could bear.
It is axiomatic that the constituent wants, above all, to tell of her feelings. It is not a rendered, rational statement to the Member of Parliament—it is an expression of feeling, the consequences of pent-up frustration. It calls for priestly empathy, listening skills and sincerity. It was called for from a person so often recently travelled from the snake-pit of Westminster, nerves jangling and frequently sleepless.
This mother’s monumental concern deserved better from me, an inadequate practitioner. I did my level best. I surely radiated courtesy, respect, support and understanding, but could it ever be enough? What could I do in the positive sense? Did my constituent leave as a satisfied visitor? Could anyone, anything, avenge her anger, despair and frustration? I doubt it, but I had the grace to escort her to the door, to shake her hand and to promise my efforts.
Some 40 years later there would be an inquiry of the utmost integrity, openly and caringly chaired by Sir Brian Langstaff, and compensation. But how do you compensate for her grief, her anger and her sons’ distress? Sir Robert Francis KC shows skills that Newton and Hooke might have admired, and I hope things go well in terms of compensation.
My constituent’s sons were the victims of a disgraceful dereliction of duty. Highly placed, extravagantly paid elite bureaucrats had failed to remain vigilant and exacting. Risks were taken, corners were cut and fellow human beings—innocents—suffered dreadful damage.
It was instructive for me to hear the speech of the noble Lord, Lord Bichard. Surely we will not advance to abolishing your Lordships’ noble House. There are always contributions to be made. No amount of Westminster do-gooders could make the ideal reversal of a fateful decision. No Commons Questions, no parliamentary debate, no petitions and no remonstrations to those committed Ministers could right this dreadful wrong. The misery continues in those wrecked lives. The guilty were hiding, and why was it so long before this inquiry took place?
This was a salutary interview for a do-gooding Member, and I never saw that marvellous mother again.
Baroness Brinton (LD)
My Lords, I thank the noble Baroness, Lady Twycross, for introducing this debate today and colleagues from across the House for their contributions. I particularly want to thank my noble friend Lady Featherstone for talking about her family’s experience and the noble Baroness, Lady Keeley, and the noble Lord, Lord Jones, for telling us about their constituents’ experience, which was profound.
My own experience was that, almost 50 years ago this year, I took a drama group to Lord Mayor Treloar school and met a number of the boys with haemophilia, as well as the other students at the school. It somewhat terrified me when they helped us to cook our meal and were parading very large knives when we were cutting things up, knowing that they were haemophiliacs, and we joked about it; but they lived their lives normally because that was how Treloar’s worked. What none of us knew at the time was that these were the same boys who were—invisibly and unknown to their families—being used for research purposes. That is an absolute disgrace.
I want to thank the victims, whether infected or affected, and the victims’ groups, including some which have been mentioned already today—Factor 8, haemophilia societies from across the United Kingdom, Tainted Blood and many others—which have been let down time and time again. From our experience over the last few years, we know that they really hoped that, with the publication of the final report, Governments past and current would do the right thing. On 20 May, Sir Brian Langstaff published his final report—there had been two interim reports in previous years and seven volumes. Those of us who have read it over them summer may have incurred the wrath of families for the box of books going away with us, but we needed to read all of it because it must never be repeated.
Sir Brian—almost alone among the other people with whom the victims came into contact over half a century—gained the confidence of the victims, not least because he promised that he would produce a report that understood and respected their position. This report is exceptional: it joins up failures by past Governments of all colours in other scandals and tragedies; it understands how the NHS failed vulnerable patients time and again, and it lays a clear route map for Ministers, Whitehall, Parliament and those in the health sector to begin to remedy this.
Monday 20 May was a very moving day. All of us at the launch of the report thought there was a new beginning. As we have heard this afternoon, however, there are already concerns and problems. Frankly, even scheduling the debate that was promised in July has been difficult; it was planned for September and changed to today. The noble Baroness, Lady Bennett, said that we should think carefully about using the phrase “world-leading” and she is right, because the lessons to be learned, as the report points out, are
“starkly obvious to anyone who has read the rest of the Report, but few people in training for a career in medicine may take that opportunity. A very real danger is that the lessons of the past are forgotten when a fresh history is being made in the years to come, and only then, after another disaster, are remembered.”
I too thought of the excellent report by the noble Baroness, Lady Cumberlege, First Do No Harm, which repeated many of the same points about lessons still not learned.
The aviation example given by the noble Baroness, Lady Bennett, is really important, because we do not have the culture of “no fault”. It is always about how to protect those who may have made mistakes. It is interesting that the noble Lord, Lord Dobbs, talked about this being an NHS problem. It was not just an NHS problem. Compensation has been paid in Australia, Canada, China, France, Ireland, Italy, Japan, Portugal and the USA, but not always from a Government. In the USA, it was the pharma companies that had to pay. What is wrong about the UK is that we are almost the last. It took us years to get to that point.
The duty of candour and leadership in the NHS have been discussed much so far this afternoon. The duty of candour was introduced in the NHS in 2014, and to the noble Lord, Lord Bichard, I say: it is very broad and about everyday practice, both professional and statutory. It defines what a notifiable safety incident is. However, do we yet have a duty of candour working in the NHS? My answer is no: we have had the Mid Staffs hospital scandal, the growing maternity scandals across the country and the vaginal mesh—in that one, the whistleblower was treated very badly and was shunned by her profession until the details came out. This is still a live problem.
The report talks about the defensive culture of the Civil Service and how that must be changed too. That is the problem that the noble Lord, Lord Lansley, and other Ministers faced. It is therefore good that the Government are going to tackle this, but what will success look like? Will it be curiosity of Ministers, or Civil Servants being able to start with, “You may not like to hear this, Minister but—”? I think there is an even more daring thing we should expect. It could and should be the uncovering of other scandals.
Patient safety is vital, monitoring liver damage in those with hepatitis C as well as those suffering from transfusions, so it is good to hear the Government’s prioritisation of the Patient Safety Commissioner. I say to the Minister something that I have said to Health Ministers in recent months: are there enough resources for the Patient Safety Commissioner to be able to do their job properly? They need it; it must be funded properly.
On transfusions, you would think that we would have learned lessons as more and more have been revealed over the years with this inquiry and other serious cases, but the majority—that is, over 80% of reports to the Serious Hazards of Transfusion scheme, known as SHOT—are now due to errors or mistakes in the clinical transfusion process. Professor Toh, the chair of National Blood Transfusion Committee, writing in the BMJ said:
“The number of deaths related to blood transfusions has more than doubled since the covid-19 pandemic and the Serious Hazards of Transfusion group reports that these numbers have not returned to pre-pandemic levels, remaining at or above 35 deaths per annum since 2020. This is deeply concerning but not entirely surprising in an overstretched NHS, yet immediate and sustainable improvements are achievable”.
Sir Brian says that there must also be funding to find the undiagnosed: anyone who had a blood transfusion before 1996 but has not yet been investigated. I realised with some horror today that I am one of those. I had a blood transfusion when I was having my second child. How will the Government communicate to the public that they need to get that blood test done?
Sir Robert Francis’s proposals for compensation were published only on 26 July this year. The scheme is open to new applicants until 1 April next year, yet, as the Government now say, further regulations covering the affected and the supplementary routes will be published only when parliamentary time allows.
In May, I raised the problems of an individual whose claim was made more than five years ago, but because the NHS has lost part of their medical records, they are stuck. They said at the time, “How can we fight a machine that is protecting itself?” Therefore, what will the Government do not just for those as yet undiagnosed but for those stuck in the system because their medical records are not complete?
The inquiry talks about protecting haemophilia care. It is good that there are peer reviews, but an important recommendation is that they should happen not less than once every five years and that NHS trusts and boards should be required to deliberate on those findings on peer reviews. That is key to changing the culture, because having a duty of candour will not work until we have that change in culture.
Sir Brian points out that patients must be given a voice. He says that they need to be “enabled and empowered”. As others have said—and I agree—talking to victims, whether infected or affected by this scandal, the lack of a voice, even today, is shocking. His five recommendations in this area are all sensible. Can the Minister say whether they are all accepted and, if they are, when they will be implemented? This includes support and funding for patient advocacy from the UK Haemophilia Society, the Hepatitis C Trust, Haemophilia Scotland, Haemophilia NI, the UK Thalassaemia Society and the Sickle Cell Society.
Many noble Lords have raised the issue of why and when a public inquiry was so late. Sir Brian said:
“By 1986 the Government can have been under no illusion about the scale of what had happened to people with haemophilia—many had been infected with HIV … Sufferers of HIV experienced public hostility and stigma. In addition, over the five years which followed it became apparent beyond question that the non-A non-B Hepatitis with which most had also been infected was far more serious than some clinicians would have wished to believe in the early 1980s”.
That was 38 years ago. Many other calls for public inquiries have also taken a long time to gather pace before Ministers and the Whitehall machine had to give in. The noble Lord, Lord Bichard, spoke of deliberate blocking and how the Nolan principles were substantially absent. That is Sir Brian’s key point: this is not just about infected blood; it is about the Post Office Horizon scandal, the Grenfell Tower fire, the Hillsborough tragedy, the thalidomide scandal, Windrush, vaginal meshes and sodium valproate. Did we not learn from thalidomide? No—and there are many more. The noble Baroness, Lady Bennett, called out what went wrong.
The noble Lord, Lord Lansley, mentioned the noble Lord, Lord Reid, who said in 2008 that this was a moral issue, not one where fault should be apportioned. Sir Brian notes that the noble Lord, Lord Fowler,
“who was … Secretary of State for Health and Social Services prior to … 1987, has urged that it took far too long for this Inquiry to be held, and has”
not been afraid to criticise its prevarication. Lord Owen, who retired from your Lordships’ House in August this year, declared very early on as a Minister that the UK must become independent in supplying blood for transfusion. It is a shame that that was not heeded and was dropped when he ceased to be a Minister. As many other Members of your Lordships’ House, of all political colours, have noted, there has been too much slowness and prevarication.
On the issue of public inquiries, I look forward to the debate your Lordships’ House will have on the report of the Select Committee, Public Inquiries: Enhancing Public Trust, because it is right to note that this is all about public trust.
It is important to note the issues relating to the redress scheme arising out of these inquiries. Sir Robert Francis and his team were working alongside Sir Brian’s. Sir Robert’s report was published in March 2022, and Sir Brian’s second interim report in April 2023. The noble Earl, Lord Howe, and I have had many debates about this interim report over the last year. With one or two minor technical exceptions, they agreed with each other. Sir Brian said that interim payments, for both the infected and affected, should have been made by December last year, not least because the complexity of awards would inevitably mean some delays. However, no one was paid by Sir Brian’s deadline.
In fact, the legislation making it possible was concluded only on the same day the general election was called—and that was in a great rush, but we did do it. The regulations were published in the depths of August this year. While I am grateful to the Paymaster-General for calling me to let me know that was happening, two months later this is the first opportunity we have had to discuss them. Next week, we are scheduled to have a regret Motion, which I laid, on those regulations. I am glad I did so, because so many noble Lords today have raised concerns about the redress scheme, so I look forward to hearing their contributions on Monday if they are around.
I am really concerned about the affected and the supplementary route. This is the first bit of official bad faith since the announcement on 20 May, from both the tail end of the previous Government and the new Government. All parties before the general election, including then Ministers and new Ministers, agreed it was urgent and supported Sir Brian’s urge that the infected and affected be treated equally. Unfortunately, this is not the case, and the regulations we will debate on Monday cover only the infected victims, leaving out other key areas, with further questions on even some of the infected ones.
Some of the widows and other victims are being told that the next regs will be published only when parliamentary time allows discussion. Unlike the regulations we will discuss next week, this Government have now created a two-tier system, they say—and that is causing real distress. They have destroyed much of the trust that was built up until 20 May. I press the Minister to say when we will see the second regulations, which Sir Brian reminded us are as urgent as the first, which we will debate next week.
Earl Howe (Con)
My Lords, before this debate began, I reflected that we were about to experience one of those rare occasions in this House in which neither party politics nor personal disagreements would rear their heads even for an instant—and so indeed it has proved. I follow the lead of every speaker this afternoon in saying that we cannot approach this most grave of topics, other than with a sense of deep shame and humility, alongside a willingness to open our minds, to listen and to learn. That is surely the only attitude possible for parliamentarians as we digest the findings of this magisterial report by Sir Brian Langstaff. In his report, the full agony of this seemingly never-ending story of failure and deceit is rolled out before us like a blood-stained carpet. Painful as his message is to us all—government, clinicians, regulators, civil servants and the NHS hierarchy—Sir Brian has done the nation a signal service. It behoves us to thank him now for the qualities he brought to his task—his thoroughness, clarity of thought and transparent humanity—all of which have given encouragement and hope, where for years none seemed possible, to the infected blood community.
The overriding purpose of Sir Brian’s report, as he makes clear, was threefold: to expose what happened and why; to describe how authorities reacted to what had happened and why they did so; and, importantly, to articulate the lessons to be learned from those findings and the recommendations that should follow from them. I am sure we all believe that Sir Brian has amply fulfilled his mission. However, for that very reason, we cannot hope to do justice today to the wide range of his findings, still less to the vast quantity of evidence given by the many individuals who came forward to tell their stories, often with enormous courage —although the noble Baroness, Lady Featherstone, gave us a vivid flavour of it.
The first and perhaps most important thing I will say is that we should regard today not as the culmination of a process but rather as the start of one. There are imperatives arising from Sir Brian’s recommendations that require swift action, as noble Lords have said—the most obvious being the need to deliver compensation expeditiously to the people infected and affected by this disaster, on a scale that properly reflects the degree of harm and suffering inflicted on them. Sir Brian, with good reason, criticises the pace at which appropriate arrangements have been put in place. Now that they have been, it is up to us to exercise oversight to make sure that the process of delivery is effective, efficient and, perhaps above all, sensitively handled.
That objective, important as it is, is one for the relatively short term. If one looks at the rest of Sir Brian’s recommendations, there is one feature that stands out a mile: to achieve what must be the ultimate aim of this inquiry—namely, to create a better future—there is an enormous amount of work to be done by a large number of people, in the NHS, the Civil Service, by Ministers across government and by Parliament. The reason for that, of course, is the need to change a culture —or, I should say, cultures; we all know that any serious endeavour in that vein, if it is to be truly successful, is bound not only to take time but to require constant renewal and reinvigoration over the years.
Although, as we know, Sir Brian lays much of the responsibility for the infected blood disaster at the door of successive Governments, in his summing up he addresses a number of audiences. The first of these is the medical profession and those responsible for codifying and imparting good clinical practice. I am quite sure that the royal colleges, the GMC and NHS England in their respective roles will have already picked up the clear messages in the report that are aimed at them. However, I hope the Minister will agree that this is one set of circumstances where the Government cannot be totally hands off when it comes to clinical practice and standards.
The noble Lord, Lord Darzi, in his recent, very valuable report on the state of the NHS, closely echoes Sir Brian Langstaff in stressing the need for a health service that is both safe and patient-centred. That is an aim that requires a certain mindset on the part of clinical staff, one in which safety and listening to patients are paramount considerations. Unfortunately, in some care settings, that mindset is in somewhat short supply. One of the noble Lord’s more depressing findings was that amid the many pockets of good and outstanding practice to be found in the NHS, there is also widespread evidence of disengagement, low morale and what he calls a “reduction in discretionary effort” among clinical staff—things that together can serve only to frustrate the good objectives that he espouses. The noble Lord, Lord Darzi, plainly sees them as objectives which are unlikely to be attainable without a very clear plan for climbing the hill in front of us, not just on the part of the NHS and the professions but on the part of government as to what regulatory structures and statutory measures are needed to support and underpin those efforts. In other words, this has to be a concerted endeavour that involves collective, open-minded thinking by all relevant bodies.
I want to pick up the issue of regulation briefly. The Parliamentary and Health Service Ombudsman is quoted as saying that there are now too many regulators in the health service. In fact, a lot of people are now saying that. Professor Charles Vincent and others, in an article published in the BMJ five years ago, made trenchant comments to that effect. Sir Brian’s view—surely right—is that the regulatory system needs to be easy for ordinary people to navigate, which it is not. Nor is it at all joined up. Sometimes, effort is poorly directed. I must confess to a personal view that too much of the CQC’s focus nowadays is on inputs and not enough on outcomes, both good and bad.
In matters of clinical safety, structures and culture are linked. Simplifying structures and redefining accountabilities are ideas crying out to be looked at. The Patient Safety Commissioner, whose appointment we owe to my noble friend Lady Cumberlege, has spoken alarmingly of a culture that is “getting worse”. She added that
“unless leaders set a strategic intention to listen and act, we are heading straight back to the days of Mid Staffs and other health scandals”.
Let those words serve as a warning.
It is not just the health service that needs to look carefully at its culture. Sir Brian’s frank exposure of the failings, defensiveness and downright deceit that have characterised the behaviour of parts of the Civil Service is chilling. At various stages of the Victims and Prisoners Bill earlier this year, we debated the merits of applying a legal duty of candour to those working in all branches of the public service. My view on that has not changed—I am not in principle against the duty of candour; I simply think that on its own it will be ineffective. It was the coalition Government who brought in a duty of candour for health service bodies in the wake of the Mid Staffs scandal. I was a member of that Government, and I wish I could say that the duty had had a measurable effect. Without somehow banishing the knee-jerk defensiveness that persists within some healthcare providers and without providers being genuinely willing to listen to the concerns of patients, a stand-alone duty of candour is simply not going to cut the mustard, either in the NHS or, mutatis mutandis, elsewhere.
How, then, to make it effective? Sir Brian believes that the missing link revolves around leadership, such that health service leaders are made directly accountable in law for the culture that they oversee. At first blush, that seems to me a pretty stiff duty to put into anyone’s job contract, but coming from Sir Brian, the idea must be one that we treat with due seriousness.
When it comes to the Civil Service, it is noteworthy that Sir Brian does not go so far as to insist that the Civil Service Code should be pensioned off. However, he does say that the duty of candour implicit in the Civil Service Code needs to have teeth if civil servants are not tempted to revert to what one witness, Dame Una O’Brien, described as a culture of hierarchy and dismissiveness. Again, her belief is that it is leadership within a government department that is the key to bringing about the desired opposite, which is a culture of trust and respect.
As with the health service, Sir Brian’s recommendation is for there to be a legal duty of accountability on senior civil servants for the candour and completeness of advice given to Ministers. Again, I cannot help thinking that so long as hierarchies exist, and for as long as civil servants are afraid of speaking out, let us say about a senior colleague, Dame Una’s aspiration may remain just that. But we must be open-minded to ideas of this kind—the gravity of the events that have unfolded over the past half a century is reason enough for us to do so.
The Minister has indicated that the recommendations contained in the Infected Blood Inquiry report will receive the closest attention from the Government over the weeks and months ahead. That is good but I should like her, if she can, to go a bit further. Many of us have observed that reports from statutory public inquiries have a tendency to disappear behind a Civil Service veil after a certain lapse of time unless there is a parliamentary mechanism to keep them squarely in the public view. In this particular instance, the sheer multitude of recommendations—I have not counted them but the number is enormous—bearing in great detail upon so many bodies, organisations and individuals surely requires a mechanism to be put in place whereby Parliament can be reassured of the progress being made in taking the recommendations forward across the piece.
In the first instance, it was helpful to hear the Minister commit to reporting back to Parliament, as Sir Brian suggested, before the end of this year on how the Government intend to proceed in this regard. However, without imposing a duty of candour on the Government—I would not be so impertinent as to do that—I would like to think that we can expect from Ministers a willingness to use this House and the other place, including a suitable Commons Select Committee or perhaps a Joint Committee, as a means of sharing and debating actions and ideas in a spirit of openness. Surely this kind of non-partisan honesty and openness is the least that we owe to those thousands of people whom our country has so cruelly betrayed.
Baroness Twycross (Lab)
I thank noble Lords for the hugely important points raised in this debate. If I do not cover questions that they raised, I will endeavour to write with further details and put the letter in the Library.
Hearing your Lordships’ contributions today is a stark reminder of the enormity of this scandal and the utterly shocking truths that the inquiry brought to light. I am clear, as the noble Earl, Lord Howe, alluded to, that there is consensus across your Lordships’ House on the extent of the failure, the need to ensure redress as far as it is ever possible and to make that through the compensation scheme as quickly as possible, and that apologies are worth absolutely nothing without action to ensure that nothing like this can happen again. That is easily said but over many years it has proved almost impossible to deliver. We must do this with humility, as the noble Earl, Lord Howe, said.
A number of noble Lords mentioned the delay to the inquiry taking place, and it clearly took too long. I note the role of the noble Baroness, Lady May, in calling the inquiry, without which we would not have the report we are debating today.
The personal testimony of many of your Lordships, including the noble Baroness, Lady Featherstone, reflects the many tragic stories told in the inquiry’s report, as did the description by my noble friend Lord Jones of his discussions and contact with his constituent’s sons, which I found quite distressing, and the description from the noble Baroness, Lady Brinton, of her own engagement with the children at Treloar School. I am clear that no amount of money could possibly compensate both those infected or affected.
I will not repeat the points that the noble Earl, Lord Howe, made on the review of the noble Lord, Lord Darzi, apart from to thank him for seeing the relevance of the review to what the report outlines, not least in how we need to remedy the faults in the health system. It is clear that the government response to so many of the failures described in the report, including the emerging threat of AIDS in blood and blood products, should have been faster and better. Today, although no medical treatment can be completely risk free, current safety standards for blood donation and transfusion are rigorous, and England’s blood supply is one of the safest in the world. Throughout the blood donation journey, there are now processes in place to ensure the safety of blood and blood products. These include the donation safety check form, testing for specific infections, donor deferrals, regulations and informed consent. I noted with concern the points that the noble Baroness, Lady Brinton, made on blood transfusions, and will write to her on the points she raised and place a copy in the Library.
In response to the noble Baroness’s points on finding the undiagnosed, I can say that GP services have introduced a new case-finding question for patients registering with a new practice to locate people who received a blood transfusion prior to 1996.
In response to the noble Baroness’s point on the resources available for the Patient Safety Commissioner to do their job properly, I point out that we have today published the terms of reference for a review by Dr Penny Dash that will look at the patient safety landscape. This review will cover the office of the Patient Safety Commissioner, along with other organisations, and will help us to understand what is required to have effective national leadership on patient safety.
In response to the point from the noble Baroness, Lady Featherstone, on the moral obligation to compensate victims, I agree that a failure to deliver compensation for those infected and affected by the infected blood scandal would be a moral failure, and it is not one that this Government intend to commit.
On the level of funding made available to the infected blood support schemes, the Government are committed to ensuring that compensation is paid swiftly, not least because the victims of the scandal have already suffered unspeakably and for far too long. Noble Lords are right to raise the fact that, prior to the setting up of the support schemes in 2017, the previous approach of providing assistance was not effective. We can be in no doubt that everyone should have paid more regard to the victims of this scandal and sought to establish the truth for them much earlier. The time it took for the truth to come to light is unacceptable.
The right reverend Prelate and the noble Baroness, Lady Bennett, raised the Orgreave inquiry. Although that is not the main topic of this debate, I confirm to noble Lords that this was a manifesto commitment of the Labour Party during the election campaign, so it will happen.
The noble Lord, Lord Dobbs, referred to the countless examples of other occasions where the system becomes self-serving. However, I am not sure that I agree that a return to a past establishment that served the public better would serve the public best, because I am not sure that that is ever what an establishment does unless it receives the appropriate challenge required.
Both the noble Lord, Lord Bichard, and the noble Baroness, Lady Bennett, highlighted the risk of complacency. We cannot afford to be complacent, and the noble Baronesses, Lady Bennett and Lady Brinton, rightly highlighted the importance of asking questions. In response to the noble Lord, Lord Lansley, I say that I have no doubt of the good intention of Ministers, but the lesson I take as a new Minister is the need to ask questions, and the right questions at the right time.
One of the most shocking elements of the whole scandal—one of many—was the destruction of key documents, including ministerial advice and medical records. Records of any sort should not have been destroyed. Today, the Department of Health and Social Care employs robust document management procedures, with all its registered files under the direct control of its departmental records office.
A number of noble Lords, including the noble Lord, Lord Bichard, focused on process and what needs to change as a result of the findings. He noted the honesty and transparency already required. We rightly say that nothing like this should ever happen again, but these words are meaningless without a clear way forward. The Prime Minister’s announcement that legislation on a duty of candour will be introduced by the Government is one step towards ensuring that change will happen. The duty will apply to public authorities and public servants and will include criminal sanctions. Culture and behaviours also need to change, alongside thought being given to the way in which inquiries function and how the findings of inquiries are addressed.
I note the reservations of the noble Earl, Lord Howe, on the duty of candour, and look forward to future discussion on how we can make sure that this might be effective, not just for the current period but in future as well.
The noble Lord, Lord Bichard, and the right reverend Prelate the Bishop of Sheffield asked what will be the scope of the Bill on the duty of candour—as noted, it is otherwise known as the Hillsborough Bill—and what the Government consider a wide application for how it would be introduced. It will be introduced to Parliament before the next anniversary of the Hillsborough disaster. Following the Prime Minister’s announcement, its scope and policy detail continue to be worked through, and the Government will provide more detail at the end of the year. The Bill will set out the duties on public authorities and public servants, including any consequences for breaches, and that will include criminal offences.
The noble Lord, Lord Dobbs, asked how many civil servants had been disciplined and whether charges had been brought. That is for the police and the Crown Prosecution Service, who will look at these matters very carefully. However, should they take any such matters further, the Government will co-operate fully. I will ask a question on discipline issues, which is a separate matter, and will write to the noble Lord.
I found the contribution of the noble Baroness, Lady Berridge, very interesting. I welcomed her focus on the important role of public inquiries as a measure that is required and used when things go wrong; as a sign that the system is working when things fail, rather than a sign of failure itself. I do not have answers to all the noble Baroness’s questions, but I will endeavour to write on those I cannot answer today. Noble Lords will have already noted the report that the noble Baroness mentioned, published by the Statutory Inquiries Committee on 16 September, which made recommendations on the efficacy and practice of public inquiries. The Government are carefully considering these recommendations, as well as those of other public inquiries, and will respond in detail as soon as possible.
On the question raised by the noble Baroness, Lady Berridge, and a number of other noble Lords—I apologise for not mentioning them by name—concerning the role of Parliament in monitoring what happens after a public inquiry, the Government are looking closely at the recommendations made by the House of Lords inquiry and will respond by 16 November. As someone who has paid close attention to a number of public inquiries relating to some of my previous roles, for me, if we do not find a way of monitoring things carefully, we cannot give an assurance that we will prevent future harm or some of the issues we have seen in the past.
The noble Baroness, Lady Featherstone, asked about the autonomy and social impact awards we have made available for the affected. A social impact award for past and future consequences of the infection, including stigma and social isolation, will be awarded to people who were infected or their estate, and to affected persons. An autonomy award addressing the distress and suffering caused by the impact of the disease, including interference with family and private lives, will be awarded to people who were infected or their estate, and to affected partners, parents and children.
On which affected persons will be eligible for compensation, affected persons will be eligible where their case is linked to that of a person with an eligible infection under the compensation scheme, and is not dependent on whether the affected person had a financial dependency on the person with an infection. This includes affected partners, children, parents, siblings and other friends and family who cared for loved ones with an infection without reward or remuneration. So far, over £1 billion has been paid out in interim compensation payments to victims of the infected blood scandal. This month, applications will open for interim payments of £100,000 to the estates of deceased people who were registered with an infected blood support scheme or predecessor Alliance House organisation, and who were infected with contaminated blood or blood products and whose deaths have not yet been recognised.
The right reverend Prelate the Bishop of Sheffield and a number of other noble Lords, including my noble friend Lady Keeley, raised concerns about the timescale for compensation. I am conscious that the community wants further assurance on this. The Government expect the Infected Blood Compensation Authority to begin making payments under the infected blood compensation scheme to people who were infected by the end of this year. Payments to the affected are expected to begin in 2025 following a second set of regulations.
I understand the disappointment about the regulations being split out. There are important details—especially in consideration of Sir Robert Francis’s recommendations, the majority of which the Government have accepted—that must be worked through ahead of the second set of regulations. This includes details such as eligibility criteria for people who were affected, and an additional autonomy award for those who were the subjects of unethical testing.
In answer to the noble Baronesses, Lady Berridge and Lady Featherstone, and my noble friend Lady Keeley, who asked about the timing of payments to those affected, subject to parliamentary approval the Government are aiming for the second set of regulations to be in place by 31 March next year. This will support our intention that payments to affected people begin in 2025.
My noble friend Lady Keeley asked about interim payments to estates and whether there will be funding for legal help in obtaining probate. The Government will provide more information on the process of applying for interim payments to estates by the end of this month. We recognise the importance of legal support for applicants who need to obtain probate and will ensure that information is provided when applications open.
I hope that what I have said in summing up the debate has offered some reassurances to noble Lords, even if I have not managed to answer all the questions. As I said, a further update will be provided at the end of the year, but I am very happy to meet noble Lords to discuss details in the meantime. If I have not addressed certain specific points, I will ensure that I go back over them when I read through Hansard. As the noble Earl, Lord Howe, said, in some sense this is the start of a process, not the end. It is an incredibly important topic and I thank noble Lords for the time and scrutiny they have given it today. All noble Lords must be acutely aware of the responsibility we all have to ensure that we learn from the truly shocking events described in Sir Brian’s report. I assure your Lordships that the Government take the report extremely seriously and will continue to respond to these vital recommendations.