Anatomising a disaster

After 40 years of campaigning, thousands of people affected by the infected blood scandal gathered in Westminster Central Hall on 20 May to give the chair of the Infected Blood Inquiry what can only be described as a ‘rock star’ welcome. They included those who were directly infected by blood or blood products, and the parents, children, relatives, spouses, siblings or friends of those affected.

I suspect few, if any, judges have ever received such acclaim. It came from the people most affected by what happened in the boardrooms of drug companies, in state-run enterprises, in public health laboratories, in hospitals and in government departments. It was a moment of justice for those who had often felt battered by the refusal for their voice to be heard or for any accountability to follow. Those present described it as ‘overwhelming.’

For the inquiry itself, this was the culmination of six years of hard work and dedication, searching through millions of documents. The 2,700-page report, in seven volumes, is testament to this. It is unequivocal and damning of collective failures.

As someone who was privileged during the inquiry to represent more than 300 of those infected and affected (including some who sadly died during the hearings), I was always struck by not just the tenacity, but also the compassion showed to others, and the solidarity created by the hearings. It was a unique experience in marrying empathy and true compassion with forensic rigour.

This article is actually about the failings of the health service and doctors, which are shaming and should be taught to every medical student. It is not about the failure to seek consent for treatment which was experimental, unnecessary and harmful, and the basic failure to recognise and understand that blood kills. It is not about the patronising misogyny and discrimination against women by doctors who refused to accept their symptoms.

It is not about the still-unknown impact of this scandal on those with thalassaemia and sickle cell, few of whom came forward to give evidence despite Sir Brian observing that they would have been as affected as any other group by the contaminated blood.

It is also not about the thousands who have died without these wrongs being acknowledged. It is not about the stigma and shame people were made to feel from contracting HIV/Aids or hepatitis, including overt discrimination by medical staff and society. I would also stress the failure to introduce testing swiftly enough for both HIV and hepatitis C for the screening of blood donations. We should all feel ashamed of the treatment these people received, which fell below the compassionate response everyone deserves.

This article is actually about how the state dealt with (or did not deal with) the ramifications of these actions – many of which involved the legal profession. Several distinguished lawyers gave evidence to the inquiry about the long and drawn-out legal processes which led to the establishment of various ex gratia schemes from the late-1980s onwards, and the approach of government to having a public inquiry.

Legal advice uncovered

The Department of Health waived legal professional privilege. The inquiry was therefore able to uncover much of the legal advice of government to examine the role of lawyers and legal proceedings to assist (or not) in enabling accountability for what went wrong.

First, the tone for the approach towards financial recompense from 1985 onwards was to assume that payments would not be made. That was because there had never been a general state scheme to compensate those who suffered the adverse effects of medical procedures.

This was stated in 1985 by Kenneth Clarke, then minister of state for health. It was an approach that suggested that nothing ‘wrong’ had happened. As the report painstakingly exposes, this was not the case. Known risks were allowed to enter, and continue to enter, the system of treatment and blood donations. Yet, as the report says, ‘it set the tone for the government’s response for many years’.

There was a focus on legal liability and the view was taken that without it the government could and should do nothing. This led to a failure to investigate whether things had gone wrong – with the assumption being that there could not have been failures in the system of blood and blood products. There was no investigation or objective consideration of the case.

Fear of setting a precedent was the priority, rather than the moral case for providing financial support and care to those who were suffering and dying. This overrode any other consideration for years and is evidenced by the time it took to set up ex gratia schemes for those with HIV after blood or tissue transfer, and those with hepatitis C from blood or blood products.

‘Not a compensation scheme’

The plight of those infected with HIV – a death sentence at the time – should have created an urgent need to assist.

What then happened shows the extraordinary power – I would say necessity – of meeting the people you are making decisions about. The secretary of state for health and minister for health met three young men dying from HIV – a meeting described by a civil servant as ‘incredible’.

The secretary of state wept (in 1987, extraordinary in and of itself). By the end of the meeting it was clear that special financial assistance should be given. The sombre reality of the lives of these men, their stoicism in the face of death and their desire to ensure that their families were cared for after their death, made a profound impact on everyone in the room.

A scheme was set up – carefully identified as ‘not a compensation scheme’. The government had often said that if individuals wanted financial support, they would need to bring legal proceedings because that was the mechanism for fault-finding.

More than 1,000 people – many of whom were seriously unwell – sought, as the report puts it, to choose the ‘insecurities and stresses of litigation’, which demonstrates the strength of feeling but also that they had no alternative.

The inquiry’s report focuses on the government’s response to that litigation. It was based on the, by now, sustained assertion that patients had the ‘best available treatment in the light of medical knowledge at the time’.

That assertion was the centrepiece of every submission made to a minister (the route through which decisions were made) – but the inquiry finds that it was not ‘based upon a solid foundation of evidence’.

The report states: ‘The position owed more to a sense that the Department of Health was defending the position of those who worked in the health service and government, and that this statement was what they would prefer to believe rather than having any clear factual basis for doing so.’

This was the ‘line to take’ between 1985 and 2017 by government in hundreds of submissions. It was routinely stated in parliament by ministers and in documents presented to officials. It led to the government continually saying that hepatitis C screening could not have been introduced before September 1991.

That was despite a judgment of the High Court (A v National Blood Authority) which said that some form of testing should have been introduced by March 1987 and screening by March 1990. As the inquiry finds, successive governments were: more concerned about reputational damage than openness; more defensive than candid; and more interested in avoiding financial exposure than admitting shortcomings.

‘Not factually accurate’

This was not the only occasion when the government sought to use distinctions which were not factually accurate to justify not making payments – or not increasing them.

In 2009 the Archer Inquiry, a privately funded non-statutory public inquiry instigated by Lord Morris of Manchester, and supported by other parliamentarians, conducted investigations and made recommendations on ‘NHS Supplied Contaminated Blood and Blood Products’. It was led by former solicitor general Lord Archer QC. One of its recommendations was to increase payments to those affected in line with principles adopted in the Republic of Ireland. Even after a judge in a 2010 judicial review said that the factual basis for the decision was wrong, government continued to assert in submissions that the position in Ireland was different because the Irish government had set up a payment scheme because it accepted it was at ‘fault’. That was not the case.

Instead, the Infected Blood Inquiry finds that ‘civil servants repeatedly took care to steer ministers away from anything that might involve expenditure, or be an implicit acceptance of fault’.

Even in 2009, after the Archer Inquiry, the government ‘was looking to see what was the least that was required of it’. The inquiry further finds that the refusal to hold a public inquiry was affected not only by the incorrect assumptions set out above, but also a view that the inquiry ‘would not help those infected’.

The inquiry finds that, just as clinicians had purported to know what was in the patients’ interests, politicians and civil servants purported to know better than those whose lives had been devastated.

Settlement

The judge in the HIV litigation wrote to the parties in June 1990 suggesting that they compromise because of the ‘cardinal importance’ that people should not die before knowing the outcome of the litigation. The judge stressed: ‘It is clearly arguable that their [the Department of Health] duty to innocent citizens who suffer injury under the aegis of such treatment has a moral dimension to it which should distinguish their assessment of their position from that criteria to be adopted by other defendants of a corporate character.’

The judge added: ‘The legal profession has a duty to do its best to see that the legal system does not become a scapegoat in the eyes of the public for what I fear may be perceived as the unjust and inhumane denial of any significant measure of compensation to the plaintiffs.’ He said that an insistence that ‘the law must take its course is not an attractive principle in the context of this case’.

The government did not initially follow this recommendation, but it did agree to settle the claim. The inquiry finds that there was no browbeating of the plaintiffs into this settlement. It was accepted by many with resignation, because of the fear of continuing litigation, concerns about the continuation of legal aid and the need to have further funds immediately.

As the inquiry finds, the real vice was the compulsion to litigate rather than offer proper compensation. The money offered was a blunt instrument.

Moreover, in England and Wales (but not in Scotland) a waiver was signed which precluded victims from being able to sue for hepatitis. The inquiry found that this was unfair, as many of them were unaware they had hepatitis and so did not know what they were signing away. Had the government from 1990 onwards adopted the approach of the judge, things may have been different.

Ex-gratia payment systems

Following on from this litigation and subsequent litigation, the government set up several discretionary trusts for those with HIV and hepatitis.

The first was for those infected with HIV by way of blood or tissue transfer and then hepatitis. This only happened after lengthy delays. It also created artificial distinctions between those with haemophilia and those infected in other ways. Again, government was worried about precedent-setting.

In the case of hepatitis, it took more than 10 years for such a scheme to be set up – revealing, the inquiry finds, that the rationale for not granting such payments was misplaced or illogical. Again, the rationale for not giving the payments was concern about precedent; that it would lead to general no-fault compensation. The line about victims receiving the ‘best possible treatment’ was still insisted on. So was the attempt to distinguish between those infected with HIV or hepatitis C.

While officials recognised that the distinction between the two infections was problematic and even illogical, the inquiry describes them as ‘clinging on’ to a view which did not withstand scrutiny.

The inquiry heard that the way that these trusts operated caused further ‘layers of psychological, economic, and social damage’ to an already devastated group.

The inquiry criticises the arbitrary nature of the sums allocated to these trusts by the government, allocations which were not based upon an assessment of need. Instead, sums were seemingly plucked out of the air. The trusts’ operation was frequently lengthy, bureaucratic and lacking transparency or clarity. It was not kind in its instinct or operation.

Record-keeping

The inquiry received extensive evidence about missing or inaccurate medical records, and about records going missing. The inquiry recognises that there was and is no central system for medical records-keeping, and that many records were destroyed by the time people knew they were infected with hepatitis C.

A lack of consistent response from health trusts and others who keep these records and sometimes relevant linked information (such as whether a blood transfusion had occurred) was not entered in the records.

The expert evidence to the inquiry was that medical records are often of inferior quality and haphazard. The inquiry finds that in most cases, records were unavailable because of incompetence, a lack of proper systems and problems with keeping paper records. All this will be familiar to anyone who seeks to examine medical records on a professional basis, including lawyers practising in clinical negligence or personal injury.

Document destruction

The inquiry also criticises the destruction of a set of documents from 1989 to 1990 relating to an advisory committee on virological safety. The documents were destroyed and there has never been a satisfactory explanation of why.

In fact the inquiry concludes that the documents were deliberately destroyed – more likely than not because they included information that related to the delayed introduction of blood screening for hepatitis C. Files relating to the HIV litigation were also lost, including primary factual material that may have been helpful to future litigation.

Learning lessons

The inquiry makes a series of conclusions about patient safety, consent and the understanding of risk in medical treatment, and the need to minimise delays in implementing safety measures.

The report identifies the following:

• There needs to be corporate memory in institutions to understand why previous decisions were or were not taken – enabling an understanding of why the lines to take had evolved as they had.
• Civil servants and politicians must interrogate the information they are given and consider what is placed in front of them.
• Beware of sacred cows and becoming tied to the status quo.
• There needs to be candour and transparency between government organisations.

In a system that values certainty of outcome, civil servants and others need to be able to recognise the limits of their knowledge. Otherwise, half-truths become shibboleths. The truth when presented should be unvarnished even if unpalatable. Information needs to be based upon facts, not what is seen as the best presentation ally.

Involve the victims

The inquiry’s recommendations endorse the Hillsborough Charter (signed by the government in 2023). The charter: places the public interest above reputation; approaches public scrutiny with candour; demands people are treated with respect; calls for an apology when things have gone wrong; and requires that accountability must be ensured.

That should, if embedded, bring about cultural change, but there remain concerns about transparency in the health service.

Sir Brian identifies the need to incentivise change and to insist upon reporting – not for the apportionment of blame but because it is a professional responsibility. A clear and effective safety-management system for the NHS is needed, rather than the disjointed and cluttered landscape of patient safety oversight.

The inquiry also recommends that there should be a duty of candour on civil servants and ministers, ensuring that there is accountability of leadership. Blame should not be placed on those who raise concerns, but on those who know there is a concern and ignore it.

Sir Brian recommends the introduction of a statutory duty of candour on all civil servants, or at least senior civil servants, covering the candour and completeness of advice given to ministers. In light of concerns raised by staff and the public, consideration should be given to imposing a duty upon ministers.

Sir Brian also recommends that where a minister does not order a public inquiry, then the Commons public administration and constitutional affairs committee should consider the question. If it recommends to the minister that there should be an inquiry, the minister would have to respond in detail.

The inquiry also recommends that the same committee oversees the recommendations and asks for progress on implementation of the recommendations.

One can only hope these recommendations are implemented and that this inquiry results in a sea change on issues of patient safety and, by extension, a cultural shift that is desperately needed within our institutions.

 

Fiona Scolding KC is a public law barrister at Landmark Chambers, London