Infected Blood Inquiry

Baroness Brinton Excerpts

Tuesday 15th October 2024 Lords Chamber

[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.