‘Don’t tell the Patient’: Penrose, Paternalism, and the Power of God

One of the saddest items to read in last week’s news, was that of the final publication of the Penrose Report on the 25th March. An investigation into the circumstances surrounding the transfusion of blood infected with hepatitis C and HIV into thousands of patients during the seventies and eighties, many of the recipients were haemophiliacs – and most were not told they had been infected through blood products until the mid-1990s. An estimated 5,000 people were infected, 2,000 of whom have died so far. The impact and legacy of this horrendous affair still lingers on, with families still unable to reconcile the suffering that their relatives and loved ones went through as a result of serious failings in the health service. The ‘Establishment’ of government and that which likes to describe itself as ‘The Medical Profession’ closed ranks, and calls for an inquiry fell on the resolutely deaf ears of successive political parties in power, despite 1,300 people across the UK becoming infected with HIV in the process. A bit like last year’s referendum, this was the public inquiry that was never supposed to happen. But – again like last year – the SNP were elected with a mandate to ensure that it happened (given that hundreds of victims were in Scotland, the pledge of a judicial inquiry was in their manifesto), and some, at least, of the uncomfortable questions were finally asked.

With a remit to investigate how the NHS collected, treated and supplied blood, as well as what patients were told, how they were monitored and why patients had become infected, it took 6 years (and 12 million of public money) for Lord Penrose, a former High Court Judge, to complete it, after being set up by Nicola Sturgeon. On its release, much of the press of the Penrose Report focused on the outrage of the families surrounding the failure to apportion blame (copies of report were burned outside the launch venue of the National Museum of Scotland, amid cries of ‘whitewash’), and the fact that there was only one recommendation: anyone who had a blood transfusion before 1991 should have a blood test. Well, duh.

But buried deeper within the resulting 1,800 pages of the Penrose Report were repeated conclusions that attributed much of the failings of the NHS to an unhealthy prevalent attitude of ‘paternalism’: that misguided, historically-rooted cultural notion that ‘doctor knows best’, dating from the time that they were revered as Gods that walked among men. ‘Patients should not be given information that will only upset them’, as the maxim goes, so that the supposed professional feels himself morally empowered to keep people ignorant of risks and continue with treatment the doctor decides has, in their opinion, more benefits.

I remember this attitude being deliberately inculcated in medical students back when I was one in the mid-eighties. An introductory speech was given by the remarkably nasal DC Flenley, at which he declared to an ancient anatomy lecture theatre filled with wide-eyed only-recently ex-schoolchildren, that they were not to consider themselves as mere students: they were “now a part of The Medical Profession.” I remember looking around that lecture theatre at those shining expectant faces around me, thrilled and seizing in that instant on their new demigod status, as Flenley described (as though of an extremely religious sacrament) that even at graduation they would be set aside from the other mortals, as they would be asked to separately stand and recite the Hippocratic oath. I wondered at the time whether some of my colleagues were really mature enough to be exposed to this guff, as they seemed to have the critical sensibilities of a lapdog, and in the light of Penrose I find myself revisiting that question.

Flenley died recently, but whether or not the dross that he spouted every year still underpins medical students teaching in Edinburgh or elsewhere, I cannot say. But I know that the symptoms of that dangerous paternalism were still in place less than ten years ago, in the incompetent treatment of my father by one David Hamer-Hodges.

My father was being seen at the time for colonic cancer by Hamer-Hodges, a consultant oncologist – recommended to my father by his GP as ‘if I had cancer, he would be the one that I would be wanting to be looked after by’. The operation had been a success, the antigens were falling. He had regular blood tests at Hamer-Hodges clinic, but everything seemed to be going swimmingly, according to reports.

Until, after some months, a wrinkle developed in that narrative. My father received a letter from his GP, saying that he should contact Hamer-Hodges, as he felt that not everything was being disclosed to him. This provoked not a little iciness – evidently Hamer-Hodges had not requested, and most certainly did not want, that intervention. I ended up going along to the clinic with my father, and cross-examining the deputy that Hamer-Hodges had so courageously put in place of himself, to answer those difficult questions. (There was even a student doctor sitting in on that meeting, as I recall, no doubt to learn how to deal with ‘difficult patients and their families’.) I asked again and again about the blood test results, and the rise in the antigens – if the cancer was not back, then what was causing that result? It could be anything, I was told – like what? Lots of different things – like? Well, cigarette smoke…he has never smoked. Well, even just being in smoky environments – he doesn’t go to smoky environments. Well, that would be enough – seriously? Yes – absolutely.

They lied there to my face with my father sitting there next to me looking for answers – and, without access to the internet searches we take for granted today, I had to accept what they said, rather than browse the Lancet or BMJ. Eventually full disclosure happened via the GP, when my father collapsed shortly afterwards, when he revealed that the blood test results were not, as my father had been told by Hamer-Hodges, “nothing to worry about”: the cancer had returned, and had metastasized, primarily centred now in the liver. Hamer-Hodges may have been making judgements about resource priorities in his unit, taking a dim view of someone almost 80 years old, when there might be others in ‘greater need’ – but he certainly failed in his responsibilities to my father as his patient. Once the final revelation of the illness happened in the GP surgery, my father was taken straight to hospital, returning home after a couple of days (because there was, now, nothing they could do). From his ‘secret diagnosis’ first being revealed, he only had two weeks to try and get his affairs in order before dying (and that is another horrendous story of incompetence by the newly-set up NHS 24 helpline – thank you so much Health Minister Andy Kerr…who also tried to block Holyrood’s Health Committee from setting up a public inquiry into the blood transfusion scandal that eventually became Penrose). His affairs were left half-done and in a mess, and the ability for he and my mother to properly plan their last months together because of a ‘doctor who knew best’ introduced chaos into my mother’s life, which she is yet to recover from.

David Hamer-Hodges retired – at 61 – two months after my father’s death, amid claims that his bowel cancer unit at the Western was ‘underperforming’.

There is another dimension to this paternalism – that patients give permission for it by their attititude. My father was from an extremely poor background, his father being a fisherman who died when he was 8 years old, and his mother had to work as a fishwife in order for them to survive. From these working class roots, came that unhealthy reverential attitude towards doctors – and particularly surgeons: so one of the worst parts of this story is, that rather than get angry at Hamer-Hodges once the revelation had occurred, he got angry at the GP for having ‘interfered’…as though, in some way, the GP that had fought for the information to be released had caused the cancer to come back by having done so, rather than having been a form of whistleblower on my father’s behalf. Shooting the messenger, indeed.

My father’s generation is pretty much gone now, and hopefully their inappropriate quasi-deification of glorified ‘flesh mechanics’ will depart with them – but while trusted professions can still maintain such deceitful arrogance towards the people that they are supposed to serve, the problems that led to the investigation by Lord Penrose, and tried to prevent the tales of incompetence from coming out, will continue to lurk in the background.

In the end, some positives did come out of it, and the speed with which the Scottish Government apologized (even though they did not even exist as a body when the events happened) and began making arrangements for compensation claims, prompted David Cameron to do the same. Although the report does not attempt to apportion blame, it is perhaps the beginning of dealing with a particularly unsavoury part of the health service’s past – and another sign of why doctors should remember that they are only doctors, and nothing more than that.

 

“To each and every one of these people I would like to say sorry on behalf of the government for something that should not have happened. While it will be for the next government to take account of these findings, it is right that we use this moment to recognise the pain and the suffering experienced by people as a result of this tragedy. It is difficult to imagine the feelings of unfairness that people must feel at being infected with something like Hepatitis C or HIV as a result of totally unrelated treatment within the NHS.” (David Cameron, Prime Minister’s Questions, 25/3/2015)

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