health – The Sense of Fairness blog

As a wearer of glasses since childhood, it comes as no surprise to me that human beings generally are shortsighted. I mean that not in the sense that we all need to wear glasses (though statistics on the way that our phone-obsessed indoor lives appear to be driving an epidemic of myopia mean that we may be headed that way), but in the sense that we avoid overloading our brains by only paying attention to what is near at hand.

We tend to ignore the distant, geographically, in terms of time, culturally, socially or emotionally, and we have to work hard if we want to lean against that natural tendency. We pay more attention to the near-at-hand, to people who look and sound like us and people who coincide with us geographically and timeously. This is a natural response: it is one of our common heuristics, methods of avoiding informational and other overloads. “human kind/Cannot bear very much reality,” as TS Eliot has it in his extraordinary Burnt Norton, one of his Four Quartets.

But that shortsighted, narrow-minded view means we miss much that matters. When we are facing global risks, parochialism is a dangerous mindset. Among other things, it seems increasingly that this human tendency continues to hamper our response to very real global health challenges.

Take mpox (the rebrand from monkey pox was perhaps an attempt to make it seem like less of a distant issue). There has been dramatically greater UK media coverage of a household of 4 mpox patients suffering from the more infectious and more potent Clade Ib version (a clade is an individual branch on the genetic family tree) of the virus, first revealed at the end of October, than there has of the almost 50,000 cases, and over 1000 deaths, in an outbreak in Africa, particularly in the Democratic Republic of Congo, over the last several months. A more still recent single case in Leeds alone has also gained greater coverage. The same is true in the US: a single case in California revealed in the late November has received notably more attention than the global situation.

The World Health Organisation declared mpox a public health emergency of international concern back in August, and reconfirmed that view at the end of November. Despite that, only a couple of days ago did WHO authorise the first vaccine for children against it – young children are particularly susceptible given it passes through close contact. Happily, in its farsighted wisdom Japan is funding 3 million doses of this new vaccine, developed by KM Biologics. As an aside, it’s worth recognising suggestions that the upsurge of mpox may be related to a health success: the eradication of smallpox has led to the vaccination programme against that disease ending, removing its suppressive effect on other poxes.

It’s as if we’ve learned nothing from the Covid pandemic: that in a global world there is no such thing as a localised virus outbreak, no such thing as a disease that will not travel. Even a virus that needs close contact like mpox will travel, though clearly much more slowly than airborne Covid and the like. And viruses adapt – just as bird flu has seemed to, leading to an infection of a Canadian teen who had no known contact with wild birds. It took that revelation for the Canadian government to invest significantly in bird flu research, something that it announced just the day after the teen’s infection was revealed. Outbreaks that may seem containable can rapidly become something more. Our response always seems to be a belated one, only when the danger is very near at hand.

Fairness argues that we should care about outbreaks of viruses that affect other communities in our shared world, but so does selfish good sense. We need not be so shortsighted.

I am happy to confirm as ever that the Sense of Fairness blog is a wholly personal endeavour.

I am once again grateful to the investment world’s Jiminy Cricket, Raj Thamotheram, for continuing to nudge me on matters of health and fairness.

Association between digital smart device use and myopia: a systematic review and meta-analysis, Joshua Foreman et al, Lancet Digital Health, Vol 3, Issue 12, December 2021

Burnt Norton, The Four Quartets, TS Eliot

UKHSA detects first case of Clade Ib mpox – now renamed Latest update on cases of Clade Ib mpox, UK health Security Agency, 30 October 2024 and subsequent updates

California confirms first Clade I mpox case, US Centers for Disease Control and Prevention, 16 November 2024

WHO Director-General declares mpox outbreak a public health emergency of international concern, World Health Organisation, 14 August 2024

Second meeting of the International Health Regulations (2005) Emergency Committee regarding the upsurge of mpox 2024, World Health Organisation, 28 November 2024

The eradication of small pox may have the set stage for the mpox outbreak, All things considered, NPR, 25 November 2024

Statement from the Public Health Agency of Canada: Update on Avian Influenza and Risk to Canadians, Public Health Agency of Canada, 13 November 2024

Government of Canada invests in research on avian influenza A(H5N1), Canadian Institutes of Health Research, 14 November 2024

“When citizens have concerns that something has gone seriously wrong, fairness should mean that they get answers.”

The report (all 7 volumes and 2500 pages of it) have the words unethical, unconscionable and wrong echoing throughout – sometimes in the same sentence. This is the devastating report of the Infected Blood Inquiry, released last week, and it is a tough read from which few in authority emerge well. Particularly tough is Volume 2, which relentlessly relays individuals’ stories, mostly in their own words. Unethical, unconscionable, and wrong; in many cases, actions were simply inhumane, indeed cruel.

I had the privilege of being at the launch of the report. Though I am not a core participant in the scandal, being neither infected nor affected in the way the Inquiry’s terms have been drawn, I have followed it closely and witnessed both its start in 2018 and this closure. A good friend at university was one of the 380 haemophiliac children infected with HIV along with their Factor VIII treatment. Thanks to the miracle of antiretrovirals, he survived to 30 but the threat of death – and the stigma attaching to HIV and Aids through crucial years of his life – blighted Dave’s time with us.

The launch a week ago today certainly did provide some closure. As I said to the Inquiry staff, it was clear from the mood in Westminster Central Hall that afternoon that people felt they have been heard and that the truth has now been fully revealed – though, sadly, in both cases this was for the first time.

The quote that heads this blog is from Sir Brian Langstaff’s masterly speech at the launch. The relevant segment is worth reproducing in full:

“The failure of clinicians to tell people of the risks of infection from blood or blood products; the failure to tell people of the availability of alternative treatments; the failure to tell them that they were being tested for HIV or Hepatitis C; and sometimes, the failure even to tell them, or to tell them promptly, that they had been infected with HIV or Hepatitis by their treatment; the failure to explain these devastating diagnoses privately, in person and with sensitivity; these failures were widespread, they were wrong, they were unethical.

“The failures in decision-making that led to the original infections were then compounded by institutional defensiveness, and that’s a pattern of institutional defensiveness that must stop.

“When citizens have concerns that something has gone seriously wrong, fairness should mean that they get answers. People infected with blood and blood products did not. Instead, their trauma has been compounded by the lack of recognition of what happened to them and by a lack of accountability.”

Sadly, too often we have found in recent times that ordinary citizens have had serious wrong done to them and that rather than getting the answers that fairness demands, they have faced assertions that nothing was wrong and a closing of ranks by those with power. I have previously discussed the Post Office/Horizon IT scandal; similar failures of candour have become apparent in other cases. There is a natural human tendency to support and protect your own, both people and organisation. There is a natural human tendency to believe that your organisation has done the right things and not the wrong – perhaps particularly so when the consequences of those wrongs are so devastating. It is these human tendencies that lead to the institutional defensiveness that Sir Brian refers to. For organisations with such power over the lives of ordinary people, such institutional defensiveness must be wrong. Fairness requires that we have systems and leadership that leans against these human tendencies.

I don’t underplay the recommendations that Sir Brian makes with regard to future monitoring and treatment of those still suffering from their infections, for memorials to those who have suffered and in particular on reinforcing the safety culture in health services, notably through the duty of candour and by giving patients greater voice. But the apparent general problem means that his recommendations regarding the defensive culture in the Civil Service and government are perhaps of broad urgency and could have the widest impacts. In essence, though put in careful and lawyerly language, Sir Brian is pressing for statutory duties on both Civil Servants and politicians in government, specifically a statutory duty of candour. His relevant recommendations in full are:

The Government should reconsider whether, in the light of the facts revealed by this Inquiry, it is sufficient to continue to rely on the current non-statutory duties in the Civil Service and Ministerial Codes, coupled with those legal duties which occur on the occasions when civil servants and ministers interact with courts, inquests and inquiries, as securing candour.
If, on review, the Government considers that it is sufficient to rely on the current non-statutory duties in the Civil Service Code, it should nonetheless introduce a statutory duty of accountability on senior civil servants for the candour and completeness of advice given to Permanent Secretaries and Ministers, and the candour and completeness of their response to concerns raised by members of the public and staff.
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 do not think it an accident that the chapter of the report that discusses the government response over decades to the concerns of those infected is called ‘Lines to Take’. The words ‘lines’ is remarkably close to the word ‘lies’, which is what the three key lines proved to be (that the infected had received the best treatment available, that infections were inadvertent, and that screening was introduced as soon as possible). When Sir Brian said at the launch that “all of those claims were untrue” (just following the segment quoted at length above) he received one of the longer of many periods of applause. These lines – lies – were pursued for years even after they had been proven wrong, and the long delay in setting up the public inquiry re-emphasised the institutional defensiveness (Sir Brian makes helpful recommendations on that too).

The memorial sculpture as created at the opening of the Inquiry; by the report launch, it had doubled in size as more individuals had added vials containing their own messages over the years of the Inquiry process.

He doesn’t quite say it explicitly in his recommendations, but it is clear that Sir Brian himself believes that there should be a statutory duty of candour on all civil servants and ministers, that they should not simply be expected to tell the truth but the whole truth, and to flag up the chain where they believe this hasn’t been done. Leadership must welcome such challenge, and not blame those who raise concerns (even if wrong) but rather blame those who know of a matter of concern and do not raise it. He accepts that in some circumstances telling the whole truth may have to be constrained by the public interest, but he expects this to be limited and he believes all those involved need to help “ensure that Government as a whole is candid”.

It’s terribly sad that this needs to be said – that a Civil Service and Government need to face calls and requirements to be candid in their dealings with ordinary citizens. But it is very clear, from this scandal and others, that it does indeed need to be said. And, as Sir Brian says, it is clear that fairness requires nothing less.

Tag: health

Shortsighted failings lead to health unfairness

Fairness in the blood