In a belated new-year blog, I thought it would be useful to set out what I think someone needs to think about if they are considering taking a drug for a mental health problem, especially if they think they might end up taking the drug for a long time. These are the questions you might want to ask your doctor if you take a ‘drug-centred’ approach to the use of drugs in mental health.
1. What Immediate Effects Will the Drug Have?
We need to know how taking a drug for a short time is likely to affect our feelings, thoughts and behaviour. Data from animal studies and ‘human volunteer’ studies can establish how a particular drug changes ordinary behaviour, feelings and mental capacities, but unfortunately, for many sorts of drug, this sort of research remains scanty or unpublished. However, the internet provides increasing opportunities for people to record their experiences after taking prescribed medication (on sites like RxISK; AskAPatient). Although data from people with diagnosed mental health problems is often dismissed because it is difficult to disentangle the effects of the underlying problem from the effects of the drug, if it is considered carefully, it can provide useful insights. Further animal and volunteer studies are also necessary to clarify certain subtle and complex effects, however.
2. What Does the Drug do if You Take it for a Long Time?
As well as knowing what sort of changes occur after one or two doses of a drug, we need to know what happens to feelings and behaviour when the drug is consumed for the weeks, months and years that drugs are typically prescribed to humans with mental health problems. Since there are ethical, practical and financial limitations to the length of time volunteers or animals can be subjected to active drugs, we need to pay attention to other sources of information on what sort of mental and behavioural changes result when people take prescribed drugs for long periods of time. Drug monitoring programmes and other systems (including internet sites) that allow users to record what has happened to them while taking a drug are essential therefore to gathering information about what effects a drug can have when it is taken for long periods of time.
3. How Does the Drug Affect the Body as a Whole?
We need to know how the drug affects the body as a whole, in all its systems, including the brain and nerves, the heart, the digestive system, the reproductive system, other hormones etc. We need information on bodily effects that occur after short term use and long-term use. We need data on measures of physical disease and impairment such as cognitive function, hormone levels, cardiac function and metabolic efficiency, as well as data on how taking a drug for short or long periods influences death rates. Animal and volunteer studies are sometimes conducted to investigate particular, drug-induced effects, usually over the short-term. Again, however, we need to rely on recording effects that occur in people who are taking medication for diagnosed mental health problems in order to assess the impact of drugs on all bodily systems after long-term use.
4. What Happens When You Stop the Drug?
We need to know what happens when someone stops taking a drug they have been taking for a while. What sort of mental and physical effects occur after withdrawal? How long do the effects last for, and how do they relate to factors such as the duration of time the drug was taken for and the dose the drug was used at? How severe can they be, and can they persist for a long time? How can withdrawal effects be minimised?
5. How Will Taking the Drug Affect My Mental Health Problems?
We need information on how all these effects – the physical, mental and behavioural effects of different drugs over short and long periods – interact with the sorts of problems that people are seeking help for when they go to see a mental health practitioner. Does taking the drug reduce the intensity of distressing feelings, for example? Does it reduce unwanted behaviours like verbal and physical aggression? This is the point at which conventional randomised controlled trial (RCT) can be useful. RCTs can help establish whether a particular drug is superior to a similar intervention like a placebo tablet for particular problems or symptoms. Of course there are numerous difficulties in formulating the nature of mental health problems, and the ‘diagnoses’ we currently use are not necessarily helpful for pin-pointing the effects of prescribed drugs. Nevertheless, with simple problems like insomnia, for example, a trial can provide useful data on whether a drug is superior to a placebo, taking into account other influences like the ‘active placebo’ effect. Unfortunately most RCTs last only a few weeks, and none provide any data about whether the effects of a drug are sustained for months and years, or how they change over time with continued use of the drug.
6. How Will Taking the Drug Affect the Rest of My Life?
If we think we are likely to end up taking a drug for weeks, months or years, then it is essential that we know how the drug might affect all the various aspects of our life, from our ability to work or just read a book, to our emotional and sexual relationships. A drug may effectively wipe out symptoms by making someone sleep most of the time, for example, but this would obviously be a hindrance to getting to work or doing the shopping. Some RCTs provide a little information on global wellbeing or functioning, but again, we need to listen to the experiences of people who have taken prescription medications to understand the range of effects use of a particular drug might have on a person’s daily life.
7. Are There Alternative Ways of Achieving the Same Effects?
In some situations other measures, such as taking more exercise or relaxation techniques, might be able to produce the same effect as taking a drug with fewer complications. When, and if, we can establish that taking a drug is likely to provide some real, concrete benefits, we then need to compare the use of the drug with other methods of achieving the same result.
It is clear from setting out these considerations that the existing research base is completely inadequate. Your family doctor or psychiatrist is therefore most unlikely to have this knowledge at their finger-tips, because much of it does not exist. One of the most important implications of the drug centred model of psychiatric drug treatment is therefore that we need much more comprehensive scientific data about the drugs that we use for mental health problems. We should have had this data before we started on the sort of mass prescribing that has now become established, but it is not too late to provide a proper evidence base for future generations to make properly informed decisions. If we start asking the right questions, we might eventually persuade funders and scientists to do some more informative research, and to collate the wealth of existing information on the experiences of people who have already used these drugs.
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This blog first appeared on JoannaMoncrieff.com
Great piece Joanna. I often look to askapatient.com when I want to see a more comprehensive, longitudinal and subjective experience of drugs and their effects. I really would like anyone who wants to start a drug to go there first. It is an amazing compendium of stories and voices of lived experience.
One of the singularly frustrating things I hear in the mental health world is the term evidence based treatment. It implies that a course of psychiatric drug therapy is a scientifically effective modality. Yes there may be partial alleviation of symptoms (perhaps), but at what cost? What side effects? What long term health consequences? What long term effects to metabolic and organic functioning?
In any event- Lived experience- It trumps all RCTs in my book. Here’s seroquel…1349 ratings…
http://www.askapatient.com/viewrating.asp?drug=20639&name=SEROQUEL
And here’s Paxil…943 ratings…
http://www.askapatient.com/viewrating.asp?drug=20031&name=PAXIL
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Thanks for the link, I didn’t know that one :).
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Joanna,
Thank you, as always, for being a voice of reason. Those of us discredited and harmed by the system (including those of us who are supposed to be a “judge” according to 40 hours of unbiased psychological career testing, which I find much more credible than you’re life’s a “fictional story,” as my medical records now state) are grateful to those of you within the system, doing the no doubt very difficult work of standing up and speaking the truth about today’s insane and unjust system. Thank you.
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Thank you for this very useful article.
The phrase “evidence-based treatment,” as it is used by those advocating for the maximum use of psychiatric drugs, is almost amusing. I too am in favor of evidence-based treatment — because the evidence shows that what psychiatrists do isgenerally useless and damaging.
So too the attacks on critics of psychiatry that they are “against science.” It is hard to imagine anything less scientific than the usual psychiatric practices. Something does not become scientific because the word “science” is repeated over and over.
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Here’s a good summary of what you should know:
http://laingsociety.org/colloquia/polofdiagnosis/modelconsent.htm
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Interesting link to know about…
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Dr. Moncrieff,
How, exactly, are we supposed to be able to find out how the drug will affect me the rest of my life ? People don’t post a lifelong history on the Internet.
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Joanna,
Thank you. I will spread this far and wide in my community. This is such a succinct, important summary of what people need to know for true shared decision making and informed consent.
I am so grateful for you and your work,
Cindy
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I’m taking cepralex for 4 years now and i have no answer yet why im talking it and when i can stop taking it and how cepralex helps my panic attacks. Specially i didn’t get better as i though and as the Psychiatrists told me. Please support me whith some useful knowledge that i can discuss whith my Dr. About my case and about my medication. Thnx
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Yes, Dr. Moncrieff, Great, practical, needed…and never anything like it seen put to by me in over thirty years–fifteen compliant and hopeful, fifteen not compliant and much more sane. Both the creation of “my” file and the clincial efforts at “information sharing” by which it was created are pretty worthless things, and were paid for over decades with whatever I was worth plus real dollars.
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P. S. – Dr. M. – But don’t forget, this bogpost is very much appreciated for coming from you. Just this rankles and hurts–How does the easily recognized and obviously needed standard approach get taken up out in my own community facilities and offices? Is that my new job, I wonder? And that’s not your fault that I never saw this common sense approach of yours put to work by anyone else. But I will have to start promoting it after getting more fully in command of every fact that bears on mental illness.
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All “evidence based” means is that somebody subjected your drug to a double-blind trial and allegedly got a supposedly significant result. It’s a form of superstition pretending your results are significant in the real world after being examined by a method unverified in the real world and subject to statistical tinkering in the mathematical world.
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