I have never before republished any article to my newsletter mailing list. For once, I am going to make an exception, and doubly so: I am reproducing two articles back-to-back. These reference the single most important idea that I have ever written about: a personal andstatutory duty of candour for professionals involved in life-or-death decisions, most notably medical doctors.
The provocation to republish these was a recent conversation with Joan Bye, whose husband Derek Bye died on 10th February. Derek and Joan have spent over four decades courageously fighting a corrupt medical and political establishment in pursuit of justice, following the killing of their daughter Helenor in 1978 and subsequent cover-up.
Joan lamented that despite quitting his career to campaign for justice, Derek felt he had not achieved his goals. I reminded Joan that the times we are in are the moment when justice can finally be anticipated, even if Derek is not able to see it through to its end. I committed to renew the fight by republishing these articles.
They could not be more timely given the now global impact of systemic corruption in medicine, and the failure of trusted institutions meant to protect us from such harm. A personal and statutory “duty of candour” places a responsibility on medical professionals to be truthful no matter what, with criminal penalties for knowing lies.
You can view the two original articles here on my website, which still masquerades as a telecoms consulting firm:
How a Duty of Candour can prevent a Tyranny of Things (November 2017)
Four lessons from 40 years of campaigning for justice (October 2018)
(At the time of writing the first article my main audience was in the tech industry, and I had only just begun to refocus myself on ethical and criminal issues. Hence the bridge to the technology implications. The hyperlinks in these original articles are broken due to my being deplatformed by Mailchimp.)
Everyone needs to be protected from lying medical professionals conniving to cover up their crimes. “Rest in peace” has never been more of an apposite wish, since Derek never had peace when not at rest. I want Joan to see justice for Helenor in her lifetime.
Derek and Joan Bye are unrecognised national heroes. Please spread their story of injustice widely. The whole world needs to hear it.
How a Duty of Candour can prevent a Tyranny of Things
November 12, 2017
Last summer I had the pleasure of meeting Thelma Parker, who has made it her mission and passion to communicate the need for a statutory Duty of Candour for public professions like doctors, coroners, and police.
I believe this issue has far wider significance than the healthcare misfeasance from which it has arisen. Indeed, it is an essential governance prerequisite if the Internet of Things is to be prevented from becoming a tyrannical open prison for people.
To make the point clear, I would like to drag out of obscurity one harrowing 1970s case of medical misconduct, and draw the wider lessons from it that we all need to take heed of. The issue is neither isolated nor historical: it is widespread and contemporary.
The root issue is the suppression of truth by those with power to hide it, and the abuse of trust this enables, with a consequent impairment of institutional learning and societal success.
The power others have over us
In life, there are many choices to be made. Some we make for ourselves, and others are made for us. When others do so, we vest in them the power of trust, which makes us vulnerable.
Our ideal is that the other people will act in our best interest, making choices for us as if they were for their own sake. Conversely, we experience horror when our interests are abandoned or contradicted by those we trusted, and we (or those we hold dear) are harmed due to negligence or wickedness.
We are mortal creatures. Those in the medical profession unavoidably can dispense demise through the choices they make on our behalf. This need not be negligent: it is inherently an imprecise activity, even with the best of intentions and skilled efforts. Nonetheless, it can be due to serious wrongdoing, as the unnecessary and awful death of young Helenor Bye shows.
I would like to share this important case study in the systemic and institutional betrayal of trust.
The disturbing case of Helenor Bye
Thelma has authored a well-written book on the case (available as a PDF download), and so I will be brief in recounting the key points. Helenor was 12 years old in 1977, when she went into hospital with a urinary tract infection. The doctor decided to conduct what was effectively an unlicensed medical trial upon her, giving her drugs for epilepsy (!) that were only licensed and tested for adult use.
The dose was exceptionally high, and initiated a painful and prolonged cycle of descent into death. At every step the medical staff doubled down on their initial diagnostic and prescription error. One of the disturbing parts of this awful tale is how the courts were used to override the wishes of her parents, who could see the damage that the treatment was causing to her.
Helenor entered the hospital with a minor infection. She left this world incontinent, wasted away and brain damaged. Nobody dared to challenge the authority of the doctor, despite his reputation among colleagues for being cruel and controlling.
A conspiracy fact: the collusion to cover-up
The cover-up was immediate and extensive:
- The post mortem delivered a fraudulent verdict on false evidence.
- The doctor, police and coroner all lied and/or perjured themselves.
- There was a highly selective calling of witnesses.
- Later genetic tests were faked.
I am parent myself, and my younger daughter faced multiple surgeries as a newborn. These were performed competently and carefully, and it was a trauma nonetheless. I wouldn’t wish the experience upon anybody. How the parents and younger brother of Helenor have coped with this criminal conspiracy is beyond me.
This could be your child. It could even be you. If that is a fate you wish to avoid, then you need to understand the systemic nature of this failure. It is not merely one “bad apple” performing an inconceivable act that could not be foreseen. Rather, we are dealing with a system whose core purpose has become misdirected.
A systemic trashing of trust
Infamously, medicine can attract psychopaths, as has been shown recently in the UK with the criminal conviction of Dr Ian Paterson. He performed hundreds of unnecessary operations on women to satisfy his disordered desire for control. Each harmful procedure was, I presume, the first Dr Paterson had performed on each patient, so they had no reason to distrust his diagnosis and intervention.
In medicine in the UK, we also saw the case of prolific serial killer Dr Harold Shipman, who murdered hundreds of his patients for personal gratification and gain. His patients were trusting in the institution he belonged to, and of the Hippocratic ethics he had taken an oath to uphold. Furthermore, they were trusting in the systems of governance, expecting that they would identify wrongful behaviour, and correct it in a timely manner.
Note how trust is a different matter from confidence: with the former, we have no prior experience to go on, whereas the latter is built upon an established pattern of relating and behaviour. (If you wish to explore this different further, I recommend The Problem of Trust by Adam Seligman.)
The death tolls we are talking about are here the equivalents of significant national disasters. When they become “business as usual”, then systems like the UK’s National Health Service can mutate into a “national harm system”, with the welfare of millions at risk.
A corrupted industry serves as a warning
It has become painfully evident that many institutions in modern life have become “pathocracies”, infected by psychopathic doctrines, and dominated by sociopathic characters. Medicine is an example of an industry that has become corrupted, since the financial incentives are increasingly to maximise “sickcare” rather than lifelong wellness.
There are many serious threats to our health and welfare, for example:
- From the intensive research of friends and colleagues, it seems that cholesterol has been wrongly demonised, and the procedure for prescribing statins is shockingly defective.
- The role of fat versus carbohydrate in a heathy diet has been scandalously misrepresented, and diabetics are being given absolutely inappropriate dietary advice.
- The ‘end of life’ palliative process defined by the innocently-named ‘Liverpool care pathway’ has become a euphemism for silent euthanasia and excuse for systematic murder of the elderly and unwell.
- At the more extreme end, we hear legion stories of organ harvesting that invoke the darkest possible of horrors; there’s too much evidence to dismiss it as paranoid rumour-mongering.
Harm caused by medical interventions — known as iatrogenesis — is the third leading cause of death and injury in the US, behind heart disease and cancer. Whatever you believe about homeopathy (personally I prefer dark chocolate as a natural remedy) it is a 100% sure-fire cure against harm by conventional medicine!
It has often been said that there is no science in medicine, and indeed it is frequently the opposite of science. The way that an innocent child (like Helenor Bye) is falsely seen as a small adult, for instance, is merely one example of a systematic failure: psychology has a reproducibility crisis, pharmacology an outright corruption one.
We are in all in a lot of trouble, whether we know it or acknowledge it. The facts speak for themselves.
A dangerous alliance of state and commercial power
It is no longer safe for the individual to merely rely upon institutional reassurances of those in positions of authority that our welfare is dear to their heart. Money and greed reign, and we need to deal with it. We unavoidably need to rebalance the power between institution and individual: the individual must have meaningful recourse when the institution acts in its own interest rather than ours.
The reality of many professions is a long way from the TV dramas and childhood games we play. The existence of a “medical mafia” is not an isolated industry case study, but merely a more visible one. As we come to give machines artificial intelligence without a corresponding conscience, the same pattern will inevitably play out in each “smart” (but absolutely amoral) technological system.
The problem is worsened when we see a conjunction of the power of the state with both corporate power (as with health insurance, or pharmaceuticals). This is exacerbated when allied to professional monopolies through licensing (as with medicine). To use a word that is currently in vogue, albeit often debased, the disaster we collectively face is a fascistic domination of the individual by institutional power.
The specific systems failure is a lack of individual accountability for poor outcomes. In these amoral systems of power, it is abstract group names, or even physical buildings, that are allocated the blame. Individuals and teams do not suffer repercussions for their wrongful behaviour.
This can be seen, for example, with the Hillsborough disaster in the UK, where 96 fans of Liverpool football club died through no fault of their own. An alliance of corrupt media, legal, political and medical professionals held back justice for over a quarter of a century, and it is still an ongoing struggle for resolution and restitution for the harm they have caused.
A paradigm change: moral by design
The key to preventing these scandalous outcomes is to establish a trusted baseline of truth. What was done, when, by who, and to whom?
There are learning systems like aviation safety that have a spectacular record of success. Every aircraft has a black box flight recorder which captures the key flight parameters and cockpit conversation. This contributes to the understanding of the root causes of every failure.
The transport safety board have the power to investigate and make recommendations, but not to punish or enforce change. This reduces the danger of conspiracy and subversion to hide the truth.
As a result, the process of flying gets safer with every crash. It is somewhat paradoxical, as we don’t wish for there to be any crashes. Yet by acknowledging them as an ordinary, albeit tragic, byproduct of an imperfect world, we gain wisdom that benefits us all — forever. This is called an “antifragile” scheme, and is a necessary precondition for long-term systemic survival.
The trick pulled by mass-murderer Dr Harold Shipman was to falsify records to cover his trail by subverting the record-keeping process. In the case of Helenor Bye, the Chief Executive of the hospital inappropriately held on to records and manipulated the case history. This is a familiar and standard operating procedure in tyrannies: the Soviets perfected the falsification of history to get away with murder.
The accountable and ethical use of power
The human motives of domination, control, profit, greed, ego, and power will not be going away any time soon. We need to accept them as an immutable and intrinsic part of our existence. Medical and moral “crashes” are ordinary events, not something totally unexpected that cannot be planned for. If we are to learn, we need the evidence of what went wrong and why.
This is where a personal and statutory duty of candour for public professions comes in.
Firstly, it is a duty to maintain truth: duty of candour. The “black box” needs to ensure that a record is truly a record, and can be non-repudiated and audited. In the age of blockchain, this should not be a big ask.
Secondly, it is personal. The individual is liable, not the institution. It means that the individuals concerned have “skin in the game”, so that they understand there can and will be consequences for engaging in subterfuge and conspiracies.
Lastly, it is statutory. There is the full force of the law behind it, and it cannot be taken away in consumer contract terms, or negotiated away by unions like the medical associations. There also has to be the prospect of prison to motivate sociopaths to submit to its strictures.
Helenor’s parents faced the accusation of being over-protective and medically uneducated. As she was the first recorded death from sodium valproate, it was hitherto presumed to be safe. By quickly forcing the truth to surface, a personal and statutory duty of candour could have both prevented the suppression of parental feedback on Helenor’s welfare, and the societal feedback on the drug’s safety.
Implications for the Internet of Things
An activity like flying, whilst life-and-death in terms of safety, is something that is done with us, as it does not transform our person. In contrast, medicine by its nature is done to us. Hence its institutional failures are interesting and instructive in the context of the Internet of Things.
As we move to a world of pervasive sensors, control systems and machine learning, we are going to embed ourselves into a pervasive “Decision Matrix”. The controls that it shifts in and on our bodies, as well as in our lived environment, will continually be doing things both with and to us.
As a result, the kind of life-or-death choices that doctors make a few times in our lives will instead become a constant stream of small interventions towards satisfaction or suffering.
This “satnav for life satisfaction” can act in your own interest, or manipulate you in someone else’s interest. Companies like Google and Facebook make money today because they manipulate your attention away from what you intended to see, in order to serve someone else’s interest. First steps are fateful, and this is not a good beginning.
The hypertext Web that fuelled Google’s rise is built on today’s prototype and problematic Internet. The future hypersense Decision Matrix will be built upon an intimate and industrialised replacement for the Internet. The “Internet of Things” is merely a metaphor for the transition zone between these paths as computing crawls out of the mainframe room into every nook of the world.
Take charge of your own destiny
We are in a period of historical turmoil. Venkatesh Rao has memorably described it as “history going supersonic”, with the tumult of change overwhelming our past institutions and intuitions. It is easy to feel disorientated. Still, the future is always malleable. We have meaningful choices over what kind of world those who follow us will inherit, and the governance structures it manifests.
This means constructing new maps to navigate high-speed life in a fragmenting society. The onus is on each of us to become cartographers and navigators of the unknown. We have to accept that the responsibility is upon us to educate ourselves, and take charge of navigating our own “life craft”, as well as “spaceship Earth”.
The culture we live in is highly masculinised, rewarding domination and competition, and denigrating nature and nurture. The idiotic influence of economics places no value on the biosphere that supports all life, for instance. Our media-driven consumer culture is corrupted and counterfeit, with few redeeming human values.
If we wish a different outcome, then we need to do something different. The biggest influence we have is to tackle root causes. A key one is the suppression of systemic learning that exists today in a “cover-up culture”. We instead need to specifically encourage and engineer positive ethical outcomes.
A personal and statutory Duty of Candour can turn a situation of compounding errors into a learning opportunity that benefits all of society today, and all societies that come tomorrow. I strongly commend it as a core governance principle for the future of the Internet of Things.
Thelma has raised a little-noticed matter of great importance. I am sure Helenor’s bereaved family would absolutely insist on it being enacted. After all, Helenor herself isn’t here to ask.
Four lessons from 40 years of campaigning for justice
October 16, 2018
“Men are never more awake to the good in the world than when they are furiously awake to the evil in the world.”
— G. K. Chesterton
I recently had the pleasure of spending time in the company of Derek and Joan Bye. They have campaigned for 40 years for truth and justice in the context of the medical profession. Their quest was prompted by the appalling circumstances of the death of their daughter, Helenor — with the hurt compounded by the subsequent cover-up.
I wrote about this case last year, and the necessity for a statutory Duty of Candour if we are to learn from our mistakes. This is not a minor historical matter, as the drug Epilim is a “Thalidomide 2.0” disaster, which has resulted in avoidable death, injury and disability for tens of thousands of people, with huge costs to their families.
These problems will be repeated both within the medical profession, as well as in new technological domains like smart homes and cities — unless we act differently. Having spent more time with the Byes and reflected on their story, I would like to share some more thoughts and conclusions.
There are three things that I feel we should bear in mind, and one critical final take-away.
Infosec, meet govsec
I have written a considerable amount about the role of psychopaths in society, and “pathocracy” as their culture. As Jung has told us, “No tree, it is said, can grow to heaven unless its roots reach down to hell.” Only by understanding the worst evil and how it arises can we raise our aspirations for righteousness and compassion.
We all know that preventing bad things from happening requires proactive preparation to mitigate risk. In the context of IT, we understand the need to secure systems, and have a large industry of information security professionals and products to do it. There are standard processes like penetration tests that we use to stress IT systems and map their weaknesses. The result, whilst far from ideal, is generally satisfactory.
Our systems of governance can also be seen as software, but running on human ‘wetware’ instead of computer hardware. These lack a comparable industry that scopes out the ‘attack surface’ and hunts for weaknesses. There is no equivalent of a transportation safety board for governance system ‘crashes’. The systemic failures remain unfixed, possibly because this serves the need of pathocratic power.
In the case of the Byes, a psychopathic physician was able to work the system to get a corrupt coroner to cover for his errors. It is presumed that they were both Freemasons, but that is not certain; even if untrue, the potential for covert alliances is there. We definitely have seen similar cover-ups before, such as with the Hillsborough disaster.
The enabling factor was that the coroner had discretion over whether evidence was given under oath. A discipline of ‘govsec’ would locate these procedural ‘bugs’ and eliminate them, so as to prevent injustices.
Corruption, crime and carelessness need to be seen as ordinary parts of human nature and life, not some extraordinary and unforeseeable surprise.
The need for long-term ‘skin in the game’
Iatrogenic harm is a fancy word to describe medical problems caused by medicine itself. It is the third leading cause of death; if an apple a day keeps the doctor away, then apples are officially a wonder drug! The way that medicine is presently practised and rewarded is to transfer the cost and risk of iatrogenic harm away from the medics and onto other parties.
The social care system is hit with the full costs of the errors of the health service. This resembles the way that IT systems were developed and deployed in the traditional “waterfall” method. Over the last 20 years there has been a mass shift towards “devops” management, which means developers have “skin in the game” for whether their software is operable and maintainable.
If we are to create truly humanised systems of technology and governance, then we need to find new “devops” ways of incentivising “here and now” choices to account for their long-term impact. As an example of the problem — and its solution — consider the supermarket loyalty card. This today encourages shoppers to over-buy refined carbs and nutrient-poor processed goods that kill them with diabetes and cardiovascular disease.
Today’s supermarket loyalty card is entirely about your loyalty to the supermarket; there is no reciprocity or responsibility in return. But we can imagine this changing: for example, what if your supermarket bill was partly paid via a life insurance policy, structured for long-term wellness? Incentives matter, and by changing them we can adjust behaviour of both the supermarket and shopper towards healthy “precision eating”.
Consent is not a substitute for conscience
The consent notices for cookies and tracking on the Web are unmissable, especially following the EU’s GDPR regulations. I am no better than you are, frequently casually hitting “accept” because I am too lazy to dig into all of the options on each website to decline.
One of the things I have learned over the last few years is that there is a kind of “honour code” for psychopaths. They like their victims to appear to (appear to) volunteer for their predation. This can be done by the psychopath advertising in advance their intention (in some obtuse way), and then treating a failure to object as consent.
The endemic problem we now face is that consent is being used as a substitute for conscience, or that it even overrides it. In the case of the Byes, they were often presented with consent forms in the most stressful and inappropriate situations, so as to create a veneer of legitimacy for what was happening to their beloved daughter.
This plays out in other domains, such as the tussle between Common Law (aka natural law of the land) and Roman Law (statutes and contracts) or Admiralty Law (law of the sea). It is hardly a novel insight to state that not all statute law is morally defensible, and neither does adherence to the law automatically result in a morally upstanding life.
Our technological systems have become over-reliant on consent to a contract or adherence to statute law. Noam Chomsky frames the problem as being the manufactured nature of consent. However, my contention is that is an unhelpful framing: the real issue is that we are focused on consent in the place, instead of conscience.
How might Google or Facebook behave differently if every choice potentially had to be justified to a jury of peers against the standard of the Golden Rule?
The real lesson from the Byes’ suffering
Each of the above was a candidate for the big take-away the 40 years of campaigning of the Bye family. But on reflection, none of them is the winner – something else was far more important.
I had presumed the figural players in the drama were Helenor herself and the cruel hospital consultant who practised unlicensed and unethical experiments upon her. I was wrong. At the risk of an inappropriate analogy, it is a bit like Star Wars, where we imagine Skywalker, Vader, Leia and Solo are the leads, but really it was R2D2 and C3PO all along.
In this case, the figural character was a Professor in the local university, to whom the Byes had turned for help. He had been genuinely caring and supportive — with one vital exception. At the critical moment, he colluded with the cover-up. Years later, at the end of his life, he turned to the Byes for forgiveness. They refused to give it, since his request was more about salving his own guilt, and lacked sufficient contrition or restitution.
Psychopaths will predate on other humans. They exist, and that’s what they do. The most important person in the story is the non-psychopath who lacked the courage to do the right thing, even if it meant loss of social stature and risked career harm and social ostracism. In other words, the most important player in this story is… someone just like you.
Are you willing to do what it takes to help deliver a world to future generations where we have learnt from the painful and tragic lessons of the past?
“The subtle and deadly change of heart that might occur in you would be involved with the realization that a civilization is not destroyed by wicked people; it is not necessary that people be wicked but only that they be spineless.”
— James Baldwin
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