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Preface
In 1993 when the first edition of this book was written evidence-based medicine (EBM) was just emerging, and prescribing by nurses in the UK and pharmacists or psychologists elsewhere was just starting to be talked about.
The biggest need in 1993 for a book like this seemed to be the need to assert the primacy of the language that people used in trying to describe what was happening to them and that those working in health care used when witnessing what was happening to people on treatment over a new biological language about lowered serotonin levels and dopamine receptor blockade.
EBM initially seemed like an ally in this effort as it was explicitly about combining the best evidence with patient and clinical values, and it put much more weight on clinical trials than on biology. EBM has however become as big a threat to the ability of two people in a clinical situation to interact in a human way as the biomythologies ever were.
We now have both a language of chemical imbalances and a language of controlled trials and epidemiological data and guidelines based on these trials and the system puts more weight on both of these than on the merits of looking at and listening to what a person on a treatment is saying about what the treatment is doing to them. EBM is about average effects rather than what is happening to the person talking to me. And the pharmaceutical industry has been masterful at arguing that if controlled trials haven't shown that something is happening then it's not happening, not quite saying patients need to be told their complaints are all in their mind.
From 1993, this book has been about what might be called data-
based medicine (DBM). When most people hear EBM they assume they are dealing with DBM when in fact they aren't. The first and key message of this book is that the person on treatment is the data. Being scientific means that we and the person or people on treatment need in a collaborative way to attempt to map the experience the person on treatment is having and perhaps after that attempt to explain it. Dismissing what is happening as coming from their mental illness is not scientific.
Many medical prescribers tell patients that they, the doctors, are scientists and unless the patient has had 10 years' training in medicine their views don't count. But one of the cardinal rules of science is that a scientist is supposed to be keeping an eye out for the observations that don't fit into the current world view. She is supposed to be looking out for the Black Swans – the examples that don't fit with the observation that all swans are white. We need to encourage anyone on treatment and anyone working with someone on treatment to form Black Swan Clubs that challenge those who deny the value of experiences – however they are explained.
This will not be an easy task. While the original purpose of EBM was to empower the patient, it has effectively been co-opted by pharmaceutical companies and we now have a world in which it is more and more difficult for anyone to believe the evidence of their own eyes or what they are being told by someone on treatment.
The main argument put forward against listening to the person on treatment is that we want objective knowledge and what patients have to say is often too subjective. That begs the question as to where objectivity comes from.
This book is committed to the idea that for the most part people when they report something are going to be correct and health care staff when they see something are likely to be correct also. Not always, but mostly. It was women and their hair stylists who noticed the effects of oral contraceptives on hair – not doctors.
If the person reporting what happens or the clinician reporting what they see invites others with a different point of view (a different bias) to consider the issues and they also come to the same conclusion
that the drug seems to have triggered this particular problem then this is even more likely to be correct and is in this sense more objective. If several people taking drugs report the same thing and several different people not on the drug – even pharmaceutical company employees – having looked at all the issues in these people's case agree that the most likely explanation for what is happening is that treatment has triggered it then it becomes ever more likely that this is the case. This drug can cause this effect. It may not usually cause it and we may not know how it causes it in some people and not others, but it can cause it.
This is where objectivity comes from. Science is a group process. It doesn't depend on experts or people being free of bias. It's about replicating something in front of us. The ‘biased’ person can help by pointing to details we may not have taken into account. The expert can help but not when it comes to novel effects when by definition noone is an expert. The expert can be more helpful later in accounting for the effects.
Compared with the opportunities to investigate all angles of individual cases and to weigh different factors, controlled trials are simply mechanical exercises that depend on the observations of clinicians and patients in the first instance. Rating scales are no substitute for the ability to talk in detail to a person. Trials that depend on scales and adhere to rigid protocols are blunt instruments that are not designed to look at the fine grain of behaviour. Objectivity does not come from a mechanical exercise like this. To err is human, to really foul things up needs a controlled trial.
I am not contrasting the Art of Medicine here with the Science found in trials. The Science of Medicine lies in being able to explore experiences with an individual patient and in attempting to account for their experience. Trials, and in particular those linked to industry, are perhaps better seen as the Artifice of Medicine.
Fifty years ago a mother presenting to a doctor or hospital with a newborn infant saying that something was wrong was not believed, especially if the tests showed nothing wrong. Now all the books say believe the mother even if the tests show nothing wrong.
When things go wrong, someone taking a psychotropic drug today is in a similar position to mothers 50 years ago. The challenge to us all is to change this. The challenge to non-medical prescribers will be to do better than doctors.
Introduction
Chapter contents
Consumers and compliance xii
Individual end-points xii
Pharmacopsychology xiii
There are typically four parties to the act of taking any psychotropic drug: the taker, those who live with them, the prescriber and the company that produces and markets the drug. All four are bound up by the history of our attitudes to psychological problems, to psychotropic drug taking and to the processes of industrialisation taking place both within the pharmaceutical industry and within medicine. All four are also shaped by changing attitudes in society at large, one of which involves an increasing awareness of the rights of individuals, included in which is a right to information about treatments we may be given.
These forces have conspired in recent years to bring about the production of handbooks about drugs that cover their mode of action, their potential benefits and their possible side effects. However, such handbooks consist mostly of lists of drugs with bold statements of reputed modes of action and comprehensive lists of side effects. These give little flavour of how these drugs may interfere with individual functioning or impinge on individual well-being.
One of the aims of this book, in contrast to others, is to produce a text that makes the issues live. There is a lot of detail about the history of different drugs. On the question of what the various drugs do, both current thinking and current confusions are outlined. Too much certainty is, I believe, the enemy of both progress and science. Apparent academic certainty also tends to invalidate the perceptions of a drug taker, who is the person best placed to ensure their own
safety and contribute to the further development of psychopharmacology in the process.
I also include an attempt to assess the influence of the pharmaceutical industry on the perceptions of both clinicians and patients.
Rather than simply give a list of benefits and side effects, I attempt to give a fuller description of what the experience of the side effects may be like and how these impinge on normal living. To try to put some flesh on the bare bones of a list of side effects means that I have compromised between being comprehensive and being significant. Readers should be aware that this book does not include every known side effect. It does not include precise figures as to the frequency of each side effect. It does not include all known interactions with other compounds. What it does include are the reactions and interactions that occur regularly, and the book attempts to give some feel for how important these are.
What emerges, nevertheless, is a list of side effects that, in many respects, is rather fearsome – to add to a set of motives on the part of both prescribers and the pharmaceutical industry that are often venal. Many of my colleagues wonder whether taking this course of action is advisable. I have a number of reasons for thinking it is.
