Can Medicine Be Cured Read online

  We have a strange paradox: the majority of people who should be on a gluten-free diet (those with coeliac disease) aren’t, because most people with coeliac disease remain undiagnosed. The majority of those who are on a gluten-free diet shouldn’t be, because they do not have coeliac disease. The ‘lifestylers’ are deluded, and non-coeliac gluten sensitivity is a pseudo-disease. People with coeliac disease are ambivalent about the gluten-free fad: they have benefited, because gluten-free produce is now easily obtained, and restaurants and supermarkets are very gluten aware. They resent, however, the narcissistic lifestylers and the self-diagnosed gluten intolerant for trivializing the condition of the 1 per cent who really do need to go gluten free.

  The Great Discovery in coeliac disease was made by Wim Dicke. This was a typical breakthrough from medicine’s golden age, achieved by a determined clinical doctor who worked with little financial or institutional support. Although Dicke struggled to publish his crucial discovery, since then thousands and thousands of papers have been published on coeliac disease, many – like mine – describing immunological epiphenomena of no clinical significance or benefit to patients. John Platt’s observation that most research studies produce bricks that ‘just lie around in the brickyard’ sums up most of coeliac disease research; I am ashamed to admit that I produced a few of these bricks. Coeliac disease is easily diagnosed and easily treated, yet the coeliac research cavalcade trundles on, with its conferences and consensus statements. Dicke is a fine example of the amateur researcher from the golden age. His integrity and reticence, not to mention his willingness to assist other researchers, now seem quaint. His inspiration during the hongerwinter saved the lives of many sick children. I wonder what this humble old-fashioned doctor would have made of non-coeliac gluten sensitivity, the Salerno experts, and Miley Cyrus.

  7

  ‘Stop the Awareness Now’

  ‘Despite the uncertainty with regard to diagnosis and pathophysiology,’ wrote Anna Krigel and Benjamin Lebwohl from Columbia University, ‘public awareness of NCGS [non-coeliac gluten sensitivity] is growing.’ The gluten-sensitivity researchers often cite this ‘awareness’ as a justification for their activities. Awareness raising is a ploy dear to the medical–industrial complex. Every week, I receive free copies of two medical newspapers. Many of the pages are filled with photographs of hospital consultants at conferences, or GPs at golf outings wearing garish sportswear. A new genre of staged photograph has emerged over the past few years: the Raising Awareness picture. The object of this awareness raising could be any of the diseases, common or rare, that afflict us. The group shown to be aiming the spotlight of publicity at this disease is usually a combination of the following: a nervous-looking doctor who is an expert in that disease; a proud patient; a representative from the pharmaceutical company that produces a drug for that disease; the chief executive of the association which represents patients with the disease; and the joker – a politician, a media celebrity or a sportsperson. The group is usually posed along with some sort of encouraging slogan. Each member of the group has their own reasons to pose for the camera. The doctor is playing the new game of My Disease Is Better Than Your Disease, hoping that all this hoopla will generate money for research, staff and facilities while raising his or her professional profile. The pharmaceutical company naturally anticipates increased sales for their product. The patient isn’t used to media attention, but quite likes it. The chief executive – usually the only full-time employee of the disease association – hopes that this awareness raising will generate enough money to keep him or her in a job. The politician will pose for anything: a retired cabinet minister appears in these free papers almost every other week, raising awareness of all kinds of diseases. The media celebrity or sports star may well have been paid a fee. Everyone has gained.

  Patient-support groups usually start out with the best of intentions, but they are invariably and inevitably hijacked by industry and dominated by single-issue extremists. I have some experience of giving talks to these groups, and after some years, declined these invitations. When I worked in the NHS, I regularly attended the annual meeting of a local support group for people with colitis and Crohn’s disease. Most of these people were charming and welcoming, but every year I encountered ‘the milkman’. I do not know if he was a patient or the relative of a patient, but he sustained, year after year, the delusion that Crohn’s disease was spread by the consumption of milk contaminated with Mycobacterium paratuberculosis (closely related to the bacterium that causes tuberculosis). Although several studies had conclusively eliminated this bacterium as a possible cause of Crohn’s disease, every year ‘the milkman’ raised his hand during the question-and-answer session to ask why I wasn’t lobbying for a complete ban on milk sales.

  Disease-awareness campaigns are based on certain assumptions, namely: that if the general public knew more about this disease, they would feel more kindly disposed towards its victims, and might even donate money to the lobby group; that politicians – so attuned to that which is modish – might be more inclined to fund new treatments and facilities for that disease; and that if awareness is insufficiently raised, other diseases will elbow this disease out of the way when it comes to giving money – both charitable donations and government funding. It is a rather dwarfish view of the world and of medicine, but it is largely true. Ireland, a small country with a population of fewer than five million, supports hundreds of disease-specific patient-support groups. Although the charity sector in Ireland has lost some of its lustre following a series of financial scandals, high-profile individuals such as ex-politicians are commonly employed as chief executives of such groups, because their experience of dealing with the media is highly valued. Ireland has one of the worst health services in the European Union; acute hospitals permanently operate at over 100 per cent capacity, and 15 per cent of the entire population are on a waiting list to see a hospital consultant. The Irish electoral system (proportional representation) means that politicians are very vulnerable to local concerns, such as small district general hospitals. Decisions on health care are therefore made very often for political reasons, and the sheer size of the health lobby sector in Ireland reflects this.

  A clearly frustrated Joe Harbison, a stroke specialist at St James’s Hospital in Dublin, and head of the Irish Health Service’s National Stroke Programme, wrote a piece for the Irish Times in 2016 entitled ‘Stroke patients are no less deserving than cancer patients’. He argued that new, highly expensive cancer drugs were getting funded, while the less glamorous disease of stroke was left languishing: ‘The cost to provide one of these [cancer] drugs for a single year is more than has been spent on the national stroke programme since its inception seven years ago.’ In a thinly veiled dig at the bellicose Irish ‘cancer community’, Harbison wrote:

  Our ground-breaking therapies should not be discounted because our patients are less able to advocate for them. Health service spending needs to be prioritised according to which interventions provide the greatest level of benefit for the resources made available. Deciding priorities by whoever can gain the attention of the media and politicians will eventually create more losers than winners. Those with the least resources for advocacy and those least able to articulate their case will end up with the worst care.

  Doctors are willing participants in the raising-awareness game. An oncologist shares little common ground with a stroke physician; they are competitors for limited resources. An honourable conscientious objector to the my-disease-is-better-than-your-disease arms race is the psychiatrist Professor Sir Simon Wessely, former president of the Royal College of Psychiatrists, who told the British Medical Journal:

  Every time we have a mental health awareness week my spirits sink. We don’t need people to be more aware. We can’t deal with the ones who already are aware… We should stop the awareness now. In fact, if anything, we might be getting too aware. One wonders what is happening when you have 78 per cent of students telling their union that they
have mental health problems – you have to think, ‘Well, this seems unlikely.’

  Wessely pointed out that although celebrities such as Prince Harry have tried to publicize and destigmatize mental illness, psychiatry struggles to recruit trainees, and services for physical and mental illness remain almost completely segregated. Despite all the awareness raising, Wessely argues that the medical profession itself is prejudiced against both psychiatry and people with mental illness. A psychiatrist friend told me that people with serious chronic mental illness, such as schizophrenia, are the real losers in all this awareness raising. These patients struggle to access good treatment, both medical and psychiatric, and their life expectancy is significantly lower than the general population. He wryly observed that the politicians who publicly support suicide awareness campaigns and call for the provision of more counsellors, might better redirect their efforts to addressing poverty and unemployment, the main drivers of suicide.

  Meanwhile, life’s inevitable struggles, vicissitudes and difficulties have been rebranded as psychopathologies, what my friend calls ‘the societal intolerance of distress’. Simon Wessely dismissed the charge that the psychiatric profession is part of a global conspiracy to make everyone mentally ill: ‘We do the opposite. We really are the people who try to maintain some form of boundary between sadness and depression, between eccentricity and autism, between shyness and social phobia.’ Maintaining this boundary is difficult. Hospital-based psychiatrists quite correctly devote their professional energies to treating patients with the most serious and chronic mental illnesses, but GPs, with consultation times of five to ten minutes, can only manage this vast societal intolerance of distress with a prescription for an antidepressant.

  As I write, today, 2 April, is World Autism Awareness Day. There are five other health awareness days in April: World Health Day on 7 April; World Homeopathy Day on 10 April; World Haemophilia Day on 17 April; and World Malaria Day on 25 April. In my hospital, I am regularly exposed to these holy days, as the doctors and nurses concerned with the disease which they wish to raise my awareness of set up stalls at the front entrance to the hospital and outside the canteen. On World Diabetes Day (14 November), for example, I can have my blood glucose checked, while on World Hypertension Day (17 May), I can have my blood pressure measured. There are now so many awareness days that we experience ‘narcotizing dysfunction’, a term coined by the sociologists Paul Lazarsfeld and Robert Merton in 1957 to mean that the more we learn about an issue from the media, the less likely are we to do anything about it. We are bombarded with information about health and disease. Some recent awareness campaigns have taken this gimmickry to absurd levels. The Ice-Bucket Challenge appeared in 2012, intending to raise awareness of motor neurone disease (MND). The craze peaked in 2014, driven by its unique combination of celebrity narcissism, bullying and social media virtue signalling. It all got a little out of hand when Macmillan Cancer Support was accused of hijacking the Ice-Bucket Challenge – sure proof, if one was needed, of the existence of the my-disease-is-better-than-your-disease phenomenon. The Irish prime minister Leo Varadkar is both admired and reviled for his canny use of social media. His website shows him having buckets of icy water poured over him at Trinity College Dublin. Varadkar is soaking wet as the Trinity students douse him, but displays a fixed, good-sport rictus. Sitting on either side of him, also drenched and smiling manically, is the head of the Trinity College Medical School and the CEO of the Irish Health Research Board.

  Some disease-awareness campaigns have been so successful that they have led to protocol-enforced dramatic changes to the way doctors work, even when the evidence for such protocols is debatable. The most striking example of such a campaign is sepsis. Infection, historically the biggest killer of humans, has been rebranded as ‘sepsis’. Sepsis could mean anything from pneumonia in an elderly woman to septicaemia (blood poisoning) in a twelve-year-old following a scratch. One such twelve-year-old was Rory Staunton, who in 2012 died in New York. He had injured his arm playing basketball, and was unlucky enough to develop septicaemia as a result. He was even more unlucky when both the family paediatrician and the doctors in the emergency room of a New York hospital failed to recognize how ill he was. Bereaved families often channel their grief into awareness-raising campaigns, and Rory’s Irish-born father Ciaran, a political lobbyist, set up the Rory Staunton Foundation for Sepsis Prevention. The foundation lobbied successfully for a senate hearing on sepsis, held in 2013. This led to the state of New York adopting regulations that require all hospitals to put in place protocols for screening and treating sepsis. Furthermore, all school children in the state now have mandatory sepsis education.

  Rory’s Regulations is an example of what might be called ‘sentimentality-based medicine’. Bereaved people are regarded as having not only a special moral authority, but a medical one, too. Maurice Saatchi, for example, embarked on a quixotic attempt to bring in new legislation on cancer research after the death of his wife Josephine Hart, and was indulged by many who should have known better. Had Ciaran Staunton not been a professional lobbyist, we would probably never have heard of Rory. He has been given a platform by the medical profession to raise awareness of sepsis, and regularly gives lectures at hospitals, including my own. How could you possibly question a man whose opening statement at medical conferences is: ‘My heart is broken’? How could you possibly express doubts about the over-prescribing of antibiotics and inappropriate treatment of frail elderly patients to a man who pauses regularly during lectures to rein in his tears? He has stated that since the adoption of Rory’s Regulations, 5,000 lives have been saved in New York State alone. How could you possibly question a man such as this about these dubious statistics? Ciaran Staunton has been indulged because the worst thing that can happen to a parent has happened to him. A cavalcade of sepsis advocates, who saw a professional opportunity for expansion, has emerged. Their mission, they say, is to ‘raise awareness’ of sepsis; boosters usually have other, less visible agendas. They can be spotted by their use of jumbo jet statistics, frequent media appearances and courting (and rather cynical use) of lay champions like Ciaran Staunton.

  Mandatory sepsis protocols now exist in all hospitals. The ‘warning triggers’ for sepsis are so vague that huge numbers of elderly hospital patients are subjected to the Sepsis Six, which include the administration of intravenous fluids and antibiotics, and the insertion of a urinary catheter. In order to qualify for the Sepsis Six, a patient has to meet only two of the following criteria: heart rate over 90; respiratory (breathing) rate over 20; temperature greater than 38°C, or less than 36°C; altered level of consciousness; blood glucose greater than 7.7; or white cell count greater than 12 or less than 4. A great many sick old people meet these criteria, most of whom don’t have sepsis and find themselves on fluids and antibiotics that they don’t need, and with a catheter in their bladder. Ciaran Staunton is correct that doctors need to be aware of sepsis, but we also have to be aware of the risks in old people of intravenous fluids (heart failure), antibiotics (Clostridium difficile infection) and urinary catheters (sepsis, paradoxically). Doctors have to be aware of a great many things, which is why our selection is so rigorous, and our training so long.

  There is growing disquiet about sepsis protocols. A group from the Harvard Medical School voiced these concerns in the New England Journal of Medicine in 2014:

  Sepsis mandates are not without risk… Protocols that force physician behaviour risk promoting inappropriate prescribing of broad-spectrum antibiotics for non-infectious conditions, unnecessary testing, overuse of invasive catheters, diversion of scarce ICU capacity, and delayed identification of non-sepsis diagnoses.

  In June 2017, the New England Journal of Medicine published a study of more than 49,000 patients treated for sepsis in hospitals in New York State over the first two years (2014–16) after Rory’s Regulations were introduced. The study reported that for every hour that doctors failed to initiate the sepsis protocol (the ‘three-hour bun
dle’), mortality rates climbed between 3 and 4 per cent. The Rory Staunton Foundation claimed, on the basis of this study, that the mandatory sepsis protocols had saved over 5,000 lives in New York. Not everyone was convinced. Mervyn Singer, a sepsis expert and professor of intensive care medicine at University College London, pointed out that mortality in the patients who did not complete the treatment protocol within three hours was 23.6 per cent; the rate in those who did complete the protocol within this time was only marginally lower at 22.6 per cent. Singer remarked: ‘The idea that every hour makes a difference forces doctors to think they’re racing against time. And I’d argue that the three-hour window for some patients makes no difference whatsoever.’ The trial was retrospective and non-randomized, and the authors conceded that ‘the results may be biased by confounding’. One such confounding factor is the appropriateness of the initial choice of antibiotic, for which no data were available. The claim that this study proved that 5,000 lives were ‘saved’ by the introduction of Rory’s Regulations is absurd. Rory Staunton died of bad luck: not just one oversight, but a series of mistakes – the classic Swiss cheese model of medical error – and not because of a global ignorance of sepsis on the part of the medical profession. Meanwhile, I see many patients misdiagnosed as having sepsis, some of whom are seriously harmed by the sepsis-focused treatment given to them. This is because most people with sepsis aren’t twelve-year-old boys who got unlucky after a scratch.