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Infected Blood Inquiry

In this blog - IPC Visiting Research Fellow, Dr Melanie Henwood, addresses the key findings of the Infected Blood Inquiry and asks what needs to happen to achieve the cultural change and system reconfigurations to ensure the lessons learned are enacted

Introduction

In 1970 the late Professor Richard Titmuss famously characterised the blood donation system in the UK as “the gift relationship”; a model of collection grounded on the principle of altruistic and regular non-remunerated contributions. It was this essential gift-like nature of the system which was held up as the key not only to ensuring continuing supply, but also of delivering high quality, ‘clean’ blood. This remains the central premise of voluntary blood and tissue donation today. Against this almost sacred principle (and the symbolism of the gift of lifeblood is unavoidable), it is hard to understand how blood and plasma came to be at the core of the worst treatment disaster in the history of the NHS. But that is indeed what transpired.

The long-awaited and forensically detailed report of the Infected Blood Inquiry chaired by Sir Brian Langstaff published on 20 May 2024, pulls no punches in setting out the “catalogue of failures” that led to 1,250 people being infected with HIV, and many thousands more with Hepatitis variants. As the report observes:

“The scale of what happened is horrifying. The most accurate estimate is that more than 3,000 deaths are attributable to infected blood, blood products and tissue.”

How did it happen?

It is sometimes easy to be wise and all-knowing with the benefit of hindsight, and it might be thought that is the case here and that the infected blood tragedy was the result of ignorance and lack of understanding of the time. Sadly this was not the case; on the contrary the risks and failures were well known over an extended period of time but practices continued to either ignore the evidence, or to be prepared to undertake an obscene game of Russian roulette with people’s life chances based on heroic – and massively wrong – assumptions about the risks of blood borne Aids/HIV transmission.

Key to the issue was the practice of importing Factor 8 blood products from 1973 onwards even though these were known to carry significant risks of transmitting hepatitis. The lack of adequate domestic supplies of Factor 8 drove the quest for external sources, while lack of research and investigation of safe processes to routinely screen and deactivate hepatitis viruses in blood plasma compounded the risks. A lack of rigour in donor selection and screening, and permitting donated blood from prison inmates and intravenous drug users to enter the system, created the conditions for the perfect storm to emerge. Perhaps the most shocking and extraordinary aspect of the saga was the involvement of recipients (including many children, notably those living with haemophilia at Treloar’s school) of plasma and blood products in research, undertaken without their informed consent or discussion of relative personal risks and benefits from participation.

Many of those people infected through blood transfusions were never told what had happened to them – a strategy which may have been primarily concerned with avoiding attribution of blame or culpability, but which ensured people did not get the treatment they needed, that they presented significant risks in spreading conditions, and that they were never given full information about why they were so ill and where responsibility lay.

What now?

As the report summary states, “a lack of openness, transparency and candour, shown by the NHS and government” has meant the truth “has been hidden for decades”. Sometimes deliberately so, with the destruction or ‘loss’ of critical records, and the motivation to avoid responsibility or blame because of the massive compensation implications.

Responsibility, concludes Sir Brian, rests “with successive governments, even though others may share some of it.” The fact that the official public inquiry was not even established until 2017 is indicative of the level of obfuscation and unwillingness to understand what happened and how to avoid a similar repetition ever happening again. The damage done is explored at individual, collective and systemic levels, and scrutinised in 7 volumes of evidence over some 2,500 pages. It is remarkable that such evidence collection and analysis has been synthesised as comprehensively as it has been when many original sources are lacking or incomplete. It is extremely welcome that the extensive insights, conclusions, compassion and justifiable moral outrage are distilled into clear recommendations across 12 central domains:

  1. Compensation (“my principal recommendation remains that a compensation scheme should be set up now.”)
  2. Recognising and remembering what happened to people: a permanent memorial should be established in the UK, and consideration of memorials in Northern Ireland, Wales and Scotland. A separate memorial should be established for the children infected at Treloar’s school.
  3. Learning from the Inquiry: the lessons to be learned which relate to clinical practice “should be incorporated in every doctor’s training.”
  4. Preventing future harm to patients: achieving a safety culture – statutory duties of candour are key and “should be extended to cover those individuals in leadership positions in the NHS, in particular in executive positions and board members.”
  5. Ending a defensive culture in the Civil Service and government.
  6. Monitoring liver damage for people who were infected with Hepatitis C.
  7. Patient safety: Blood transfusions
  8. Finding the undiagnosed (asking people about any transfusion history and testing for Hepatitis C in those transfused before 1996).
  9. Protecting the safety of haemophilia care.
  10. Giving patients a voice.
  11. Responding to calls for a public inquiry.
  12. Giving effect to recommendations from this inquiry.

The immediate impact of the publication of the inquiry reports will be cathartic for the infected and affected, with the spotlight clearly directed today on speaking truth to power. It will provide vindication for the thousands who have campaigned on the issues for decades, and the journalists who have sought to uncover the facts. But that is not enough; nor will it provide redress for the lives lost and diminished. This is in many ways a Hillsborough moment for all concerned; it is the NHS equivalent of Mr Bates Vs the Post Office – the time when it became clear beyond doubt that something catastrophic had happened, and been dealt with by repeated denial and cover up. But that in itself will not be sufficient; as those same examples have demonstrated – conducting public inquiries can bring greater understanding of what went wrong and where blame must lie, but they do not guarantee the changes required will ever happen and similar events will not recur. The ‘lessons must be learned’ mantra is a familiar one in all areas of catastrophic policy failure, from child protection to residential care abuse, combustible building materials in public housing to aviation disasters. Every time, the same litany of avoidable errors, cultural resistance, blurred lines of responsibility and communication failures. The problem is not in understanding how we got here, but in being doomed to repeat the same failings despite that knowledge and all the reams of damning evidence.

The standing ovation given by the families impacted by contaminated blood to the Inquiry Chairman when he presented the findings on 20 May speaks for itself in signalling some level of closure and a sense of finally being heard, and those are important outcomes. This is indeed a watershed event; but it comes at a time of political instability and growing pre-election febrile tendencies which must not be allowed to dilute response to the detailed recommendations. The Prime Minister has accepted the report’s findings, acknowledging that this is “a day of shame” for the nation. He has offered a “wholehearted, unequivocal apology” and a commitment that “nothing like this can ever happen again.” Even more importantly, he has agreed to the vital need for meaningful compensation: “whatever it costs to deliver this scheme, we will pay it.” These are fine words, but the follow through will be what matters.

This is not the end of the process, but it is potentially a massive turning point in accepting state responsibility for a decades-long moral failing. But the prospects for ensuring there can be no repeat of similar shortcomings in care and treatment are not good. Sir Brian refers to the need for comprehensive cultural change and transparency in place of repeated cover-ups, denial, misdirection and victim blaming. But simply pointing to the imperative of this transformational change will be insufficient to deliver it. For thousands of people and their families it has come too late; for countless thousands of others, the promise of ‘never again’ must be more than just an aspiration. How do we build and sustain systems, processes and values - led practice that deliver high quality care, and rapid redress and remedial action when against all expectations and hope treatment outcomes fall far short and cause actual and catastrophic harm? The publication of the inquiry report is symbolically and politically highly important, but in itself it cannot be the solution; as always when systems fall apart and large numbers of people suffer personal loss, distress, trauma and death, the reasons why are fundamentally about a mismatch of power. Changing the likelihood of recurrence is not only about culture and systems, but about reordering autonomy and power, rewards and sanctions, and bringing genuine accountability into all levels of public services and government. That is a far bigger agenda, beyond the remit of the public inquiry and probably beyond the political courage of any government.

Melanie Henwood, Visiting Research Fellow
Melanie Henwood, Visiting Research Fellow

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