Researcher and former president of the British Psychological Society, Dr. Peter Kinderman, and postdoctoral researcher, Dr. Kate Allsopp have recently published two letters in The Lancet Psychiatry. Both letters, written one year apart, urge clinicians and policymakers to use ICD diagnostic codes that contextualize individuals’ distress in social terms rather than codes that frame distress as “disorders” within the person.
Kinderman and Allsopp write:
“It is well known that poverty and social inequity are major determinants of our mental health,1 and the United Nations Special Rapporteur characterizes mental health care not as a crisis of individual conditions, but as a crisis of social obstacles, which hinders individual rights. It is important, therefore, that the circumstances that have given rise to distress should be formally recorded alongside the distress itself.”
In September of 2017, Kinderman and Allsopp published their first correspondence letter: a proposal for clinicians and policymakers to utilize diagnostic codes that include descriptive information about the context of people’s suffering. For example, within the ICD-10 and the DSM-5, there exist numerous diagnostic codes that describe “problems related to family upbringing, and housing and economic problems,” they point out. However, these codes are rarely used in favor of more traditional, biomedical understanding of health.
Kinderman and Allsopp proceeded to highlight the connection between poverty, inadequate housing, and insufficient access to food, with later development of “socioemotional behavioral difficulties.” Further, they note that the UK Governments reassessment of disability benefits has been linked to an increase of suicides, antidepressant prescriptions, and other mental health-related problems. Yet, the diagnoses provided by clinicians and policymakers tend to reflect individual disorders.
The authors illustrate this contradiction between the evidence and practice as they write:
“Imagine if it were as serious to fail to document extreme poverty as it would be for a clinician to fail to identify severe depression.”
Kinderman and Allsopp do not suggest that clinicians attempt to single-handedly eliminate and solve the complexities of social inequity. Rather, they put forth a more feasible alternative that includes shifting diagnostic practice to reflect social determinants of health.
“We do not expect that clinicians should resolve such difficulties; it is not the job of mental health professionals to end poverty. Nevertheless, proper recording of psychosocial ICD and DSM codes in the context of psychiatric diagnoses is imperative because of the close relationship between the two.”
In their second letter, published one year later, Kinderman and Allsopp reinforce their original proposal to avoid the medicalization and pathologization of distress. They write:
“Any modern record system will use categorization, but we can, and should, avoid unnecessary pathologization and welcome methods that contribute to better clinical services. With clearer links to social inequity, this strategy would help establish a rights-based approach to care, and service users need not be given a diagnostic label, which many find unhelpful.”
They further elaborate on their proposal, addressing the resistance that tends to arise in response to the recommended alternative to mainstream diagnostic codes.
“Despite arguments that traditional biomedical diagnoses ignore the social context and adversities survived by people who later report mental health problems, supporters of diagnosis often suggest it is the only way to plan treatment and access services.”
Moreover, unlike other diagnostic alternatives which involve the introduction of a novel or revised classification system (see MIA report), their suggestion is to employ the use of already-existing codes within the ICD-10 and DSM-5. Therefore, the potential to appropriately contextualize one’s suffering within their surrounding life context can be effective immediately.
Kinderman elaborated on this point in a recent social media post, following the release of the second letter:
“My colleague, Kate Allsopp, and I have just published this short piece in the Lancet Psychiatry. It outlines how, within the World Health Organisation’s ICD-11 (or ICD-10, for that matter) we could move away from pathologizing illness labels and instead use clear, scientific, descriptions of our problems. It’s a companion piece to an earlier article explaining how we could – and should – also record the psychosocial adversities that lead to such problems.”
“This is important, because a non-diagnostic, non-pathologising, scientific alternative is not only already available, it is actually part of the World Health Organisation’s existing system… we can make the change today!”
Other increasingly popular alternatives, such as the Power Threat Meaning framework, offer a clearer departure from traditional diagnostic classification systems (see MIA interview). This offers certain benefits, especially considering that traditional systems struggle to attain reliability and validity.
Kinderman and Allsopp point out that a documented increase in national data of the use of psychosocial diagnostic codes would serve to highlight the impact of psychosocial adversity on health as well as further elucidate the relationship between the two. They conclude their second letter with the following statement:
“To extend, therefore, our earlier recommendation that clinicians use ICD social codes, we further recommend that these phenomenological codes offer a constructive, radical way forwards.”
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Kinderman, P., & Allsopp, K. (2018). Non-diagnostic recording of mental health difficulties in ICD-11. The Lancet Psychiatry, 5(12), 966.
Allsopp, K., & Kinderman, P. (2017). A proposal to introduce formal recording of psychosocial adversities associated with mental health using ICD-10 codes. The Lancet Psychiatry, 4(9), 664-665.
As far as I know what works for “rational” anxiety (fear of losing job) also works for “irrational” anxiety (fear of being murdered).
And I think I can demonstrate this (scientifically).
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“This is important, because a non-diagnostic, non-pathologising, scientific alternative is not only already available, it is actually part of the World Health Organisation’s existing system… we can make the change today!”
It would be wonderful to move in this direction. In my work it’s clear that socio-economic conditions and intergenerational trauma are key elements in individuals mental health picture. It’s likely that most human suffering (in the form of symptoms described in the DSM) are a direct result of living in acute and chronic states of stress, which includes social isolation, poverty, living in unsafe neighborhoods, facing discrimination by the police, and the like.
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What we take for “mental” or “emotional disturbance” has always been a matter of social adversity. Finally, a few researchers get around to recognizing it as such.
As the above report points out, how can you diagnose “emotional depression” in ignorance of economic depression? Here, it is human relationships that must make all the difference.
Remember the land of opportunity? It belongs to 1 % of the population now, but, collectively, we have the power to change all that.
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This may be a valuable intermediary step but the logic is difficult to understand. When the absurdity of PTSD addresses all “mental disorders”, pathologizing natural reactions to trauma should seem wrong. It is unfortunate that “trauma-informed-care” critically ignores the obvious- that distress is the natural (rather than pathological) reaction to trauma.
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This is mainly an attempt to justify professionalization and medicalization of obvious social and political issues understandable by all, and to focus on the individual while purporting to “diagnose” society.
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I figure the real problem is that researchers need to become a little more adept at diagnosing social animosity. Social animosity is the real reason behind locking people up and “treating” them.
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True.Social animosity between psychiatry and other class of patients is also the reason why the entire healthcare budget allocation goes to life style diseased patients and almost nothing for psychiatry patients.This is discrimination,a sort of apartheid against psychiatry.Their intent is to throw us out of life.Because of such animosity we lose our property and job as well.Their hostility is very much evident.
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But then whom should the patient approach to resolve such housing,economic and occupational problems,to name a few.I’am from India and I have approached social workers,NGO’s,ministers,even written to our prime minister.The latter only replied with a happy birthday card.In other specialities doctors are working hand in gloves with the representatives of common public like the local leaders and ministers.There is an hyper-conscious reaction to physical cleanliness,to avoid paper and plastic but nothing for psychiatry.Why are the ministers and local leaders and the psychiatry community running away from their responsibilities towards the psychiatry patients.This amounts to negligence.
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Because their actual responsibility is not to the so-called “patients” but to the system they are paid to defend.
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I do agree, “It is important … that the circumstances that have given rise to distress should be formally recorded alongside the distress itself.” Rather than the cause of the distress being denied, which is what our modern day mental illness creators/”mental health professionals” have been doing for decades.
Especially since today’s US “mental health professionals” believe distress at 9/11/2001 is a brain disease within a person’s head. Despite the reality that today, lots of people question, and are still disgusted by 9/11/2001, and the never ending wars that are still being waged, due to that event.
Plus, today’s “mental health professionals”/mental illness creators believe concerns of the abuse of one’s child is a brain disease within a person’s head. And that, once the medical evidence of the abuse is finally handed over, a psychiatrist who knew he needed to properly address this problem did not. But instead suggested the best way to help a child who had largely healed from child abuse, was to have a child psychiatrist massively psychiatrically poison that child. At which point, of course, I said no thank you, and had to walk away from that satanic psychiatrist.
That psychiatrist behaved in a completely inappropriate and insane manner because, as it turns out, today’s DSM psychiatric system, was set up as a child abuse covering up system by design, long ago. Child abuse is listed as a “V Code” in the DSM, and the “V Codes” are NOT insurance billable disorders.
https://www.psychologytoday.com/us/blog/your-child-does-not-have-bipolar-disorder/201402/dsm-5-and-child-neglect-and-abuse-1
This DSM “flaw” has resulted in huge percentages of the DSM stigmatized, actually being misdiagnosed child abuse survivors. Today over 90% of those stigmatized as “borderline” are actually misdiagnosed child abuse survivors. Over 80% of those stigmatized as “depressed,” “anxious,” “bipolar,” or “schizophrenic” today, in other words with the “psychotic and affective disorders,” are misdiagnosed child abuse survivors.
https://www.madinamerica.com/2016/04/heal-for-life/
All this misdiagnosis of child abuse survivors, due to this flaw in the DSM, is why I absolutely agree, “the circumstances that have given rise to distress should be formally recorded alongside the distress.”
As to, “within the World Health Organisation’s ICD-11 (or ICD-10, for that matter) we could move away from pathologizing illness labels and instead use clear, scientific, descriptions of our problems. It’s a companion piece to an earlier article explaining how we could – and should – also record the psychosocial adversities that lead to such problems.” Great idea, but ….
I’m not certain about the ICD, but I do know that in the DSM “the psychosocial adversities that lead to such problems,” like child abuse, are not insurance billable disorders. Thus, our “mental health professionals” ignore and deny “the psychosocial adversities that lead to such problems,” precisely because they can’t get paid for addressing them. This flaw in the DSM billing code “bible” would need to be corrected.
Not to mention, the iatrogenic illnesses that can be created with the psychiatric drugs – like “bipolar” and “schizophrenia” – should be replaced with truthful descriptions of these iatrogenic illnesses, like antidepressant or ADHD drug induced “bipolar,” or neuroleptic induced deficit syndrome (negative symptoms of “schizophrenia”), or antidepressant and/or antipsychotic induced anticholinergic toxidrome (positive symptoms of “schizophrenia”).
But if you took both “bipolar” and “schizophrenia” out of the DSM/ICD, this would go a long way in helping our “mental health professionals” “move away from pathologizing [stigmatizing] illness labels and instead use clear, scientific, descriptions of our problems.”
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It might be easier to resolve, once you realize that “psychiatric diagnoses” aren’t. Once you realize this, then it’s easy to comprehend that the DSM’s aren’t diagnostic at all, but merely descriptions of extreme states and/or extreme forms of behavior. It’s also easy to comprehend why the world of psychiatry is also the world of treatment failures. The problem isn’t that shrinks are too medical, but that they don’t practice real medicine, preferring linguistic puffery and blind “medical” treatments instead.
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One devil was telling the other devil how they would destroy a particular society. What we do first, he said, is we work on the families, to remove kindness and tenderness towards their children, because it makes them weak. Kids need to be tough, without feelings. Don’t wait for them to grow up, make them. Evaluate them thru competition. It’s all about winning. If we convince enough of them, the devil went on, in a few generations, they’ll do it to themselves.
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It’s important also to diagnose mercury vapor poisoning (T56.1), which is nowadays one of the main causes of “mental illness”, thanks to non-gamma-2 dental amalgams
https://www.researchgate.net/publication/323837706_A_suppressed_report_of_millions_of_mainly_non-autistic_victims
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This is silly. Capitalism cannot be “diagnosed” and “treated,” it must be eliminated. Anything to hold onto that professional degree.
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It’s funny because I have my medical records from my physician during the leadup to my bipolar diagnosis.
I had been increasingly ill during the six months prior with an inflammatory skin disorder and emerging GI issues (I shed the lining of my colon). I know now that these are clear indicators of autoimmune dysfunction and, though we had moved and I was seeing a new doctor, there is lab work from my first visit indicating a basic investigation into possible inflammatory disorders (Lupus, RA, Celiac) but no written description of the physical complaints. I went home with multiple prescriptions appropriate to a fibromyalgia diagnosis.
On subsequent visits, my doctor still made no written record about my physical complaints but did make extremely judgemental comments in my patient record about my living situation and family status, and months later, my increasingly manic behaviors (shortly after being prescribed Effexor). He simply wrote “bipolar?”
This was the first doctor to tell me I had fibromyalgia, and prescribed (among other things anticonvulsants, antidepressants, painkillers, muscle relaxers, and sleeping pills) accordingly, though there is no record of my physical complaints, nor of the trigger point test he performed (later found to be unreliable in diagnosis of fibromyalgia), or of the actual diagnosis anywhere in the written record. There is plenty of shaming leading up to and after my suicide attempt. But the record reads as entirely psychiatric without mention of my physical symptoms leading me to believe he thought them to be psychosomatic from the beginning, which was very much how fibromyalgia was viewed back then. It’s still not much more than a wastebasket “we don’t know what’s really wrong with you” diagnosis.
So the point of this rambling is that it doesn’t really seem to matter if there is a compassionate diagnostic label for someone who is struggling with social adversity if the doctors begin with no compassion towards the struggling patient. Maybe medical school needs to have a designated class on empathy or simply incorporate empathic care practices into its teaching texts and curricula.
My life wasn’t any crazier than any other Appalachian hillbilly and I didn’t deserve his judgements influencing the medical care he gave me or the psychiatric disability he induced. My physical complaints (that I now finally know we’re underlying Lyme disease) should have been his primary focus. I feel a bit cheated out of the last 17 years but mostly I feel really jaded and pessimistic that it will change. So many other people have been treated just as poorly by medical providers. It’s a disgrace and the medical profession should be ashamed of the level of shaming that makes its way into patient “care”, which seems less and less caring the deeper you look.
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Has discovering the underlying Lyme disease changed your attitude towards the “fibromyalgia” diagnosis?
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I had long since discarded the fibromyalgia diagnosis partially because there is a very strong history of autoimmune diseases in my family and the fibromyalgia was always clearly a label for something doctors didn’t understand and didn’t really want to treat.
I fired my last primary care doctor (and wrote about it here at the time last year) for dismissing my symptoms as “just my fibromyalgia”. And by the time she said that in March of ‘17 I was already seeing a cardiologist and had been having large joint issues for 6 years. I was a textbook case of late Lyme disease and didn’t know it.
Over the years my joint issues have been called fibromyalgia, a compensation injury, a sports injury, carpal tunnel, mixed connective tissue disease, and finally Lyme arthritis. When different doctors come up with so many different diagnoses, it’s nice to have the strongly positive serological confirmation of what it actually is.
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I should add that the political attitude toward fibromyalgia in the early aughts was fraught with patient abuse from literally all spheres. The public was skeptical and treated (and still do treat) people with invisible illnesses pretty poorly, and doctors mostly considered it a somatoform illness.
I think it’s now pretty well established that people with that label are experiencing real dibilitating illness. What isn’t really firmly established yet is whether the people so diagnosed are mostly experiencing a discreet illness in common that we’ve decided to call fibromyalgia or mostly have other illnesses that simply haven’t been properly diagnosed.
I don’t know where exactly I sit on this fence but I tend to look at fibromyalgia research with a skeptical lens. I think doctors invented a syndrome category to place their difficult cases. Some of this is driven by insurance companies who will refuse to pay for more extensive testing when the usual common panels come back negative. A doctor can easily be sanctioned or lose their participation rights with an insurance company if they run too many tests on a patient that isn’t literally dying. Medicare’s rules are even more stringent and they pay less. So it’s not entirely the physician’s fault. Underlying capitalist forces are driving these malpractices.
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From what I’ve seen anecdotally, trauma seems highly linked to fibromyalgia diagnosed individuals. It is my belief that the body will show various signs of distress anywhere from 10-25 years after childhood trauma. It appears that people who have experienced ongoing trauma in childhood are particularly prone to experiencing various physical pain and discomfort that cannot be accounted for elsewhere. Trauma also seems linked to autoimmune disorders.
I believe most doctors don’t like diagnosing fibromyalgia because it gives patients few answers. Personally, I think it’s just the body’s way of processing traumatic material.
I agree with you that the entire system is problematic. When capitalistic forces drive a system, we know that it will rarely benefit all of us.
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Fibro is an excuse diagnosis. “I don’t know what is wrong so I am going to call it Fibro so I don’t have to pay any attention to your complaints anymore.” Basically that is all it is. I also believe IBS is a similar excuse diagnosis. “I don’t want to deal with your complaints anymore, so I’ll call it an incurable disease so I can safely ignore what you’re saying.”
I actually know someone who was misdiagnosed with Fibro. The diagnosis itself caused the person to fall into the looping effect, suddenly developing the entire “symptom-set” of Fibro AFTER the diagnosis. This caused long-term disability, drugging, and down the downward spiral.
Turned out it was not Fibro, which is by default a misdiagnosis, but something else causing pain, which was overlooked for years until finally it was detected. Treatable and curable.
Now I am asking myself if this person is going to cling to the Fibro diagnosis as a way of staying on disability, or leap back into employment and enjoying life once cured. I have noticed that a lot of people, an overwhelming number, are really scared to go back to work, which is understandable because the MH System creates this fear. The result of being so scared is to revert to any kind of disease possible, even look for diseases, just to remain a drop-out. Those invisible diseases are likely the best disease of choice, as they’re vaguely defined and difficult to detect, many based on patient report of symptoms…easy way to stay on disability, in my opinion. But many just don’t see the forest through the trees.
Maybe I have this disease? Or that one? If you keep asking yourself this, you are sure to find something, some new label to put on yourself. It is like finding dust in your home. Look hard enough and you will find something to get picky over.
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Kindredspirit,
Your story is all too common in the medical model of “care”. Doctors in my experience are lacking emotional intelligence. They are also in denial that they do harm to people they supposedly are trying to help. I think that medical school needs to do a better job encouraging non-empathetic doctors into parts of medicine that don’t require a good bedside manner to be effective. Doctors, in my experience, are also an arrogant lot. They rarely admit serious mistakes. They place blame onto their patients when things don’t improve or worsen. They create addicts with their prescription practices. While there are some very thoughtful doctors out there, the norm is still to over-pathologize, under-empathize, judge, and to over-prescribe.
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Shaunf, my heart truly aches for all of the people who have been treated this way. It’s so common and it’s tantamount to widescale medical malpractice.
If I accomplish nothing else in life I hope to be a thorn in the side of those who would continue to inappropriately assign psychiatric labels to physically sick people because it so substantially impacts health outcomes.
This has been a painful, sad, ultimately lonely and wastefully expensive journey to get to the correct diagnosis.
There’s a semicolon on my right ankle. My story isn’t over yet. And maybe telling it will help someone else avoid such a difficult journey and painful outcome. I hope.
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Kindredspirit,
Yes, it is absolutely terrible. Modern medicine should not be doing more harm than good, but clearly they are falling way short of their supposed ethos. I think that treating mental distress really needs to be out of the realm of psychiatry. So many medical problems are caused by “treatment”. Also, many medical problems are missed by doctors and falsely labeled as “mental illness.” It is very angering. Thank you for sharing your story which is very worth telling.
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The relationship between individuals and their environment is, both, complex and subtle. Add to this that being adjusted to a dysfunctional society only means that one is playing a role in the dysfunction–at the very least enabling it, which is a hefty contribution to its existence.
Once the dysfunction is called out, then the individual who spoke their truth and blew the whistle shifts their role to outlier and usually becomes ostracized or “marginalized.” Naturally, truth is threatening to a dysfunctional community, and it will band more tightly together to keep the truth at bay so that it does not come to light. That would challenge the entire system more than it would want because then each individual would face their own hard truths. It’s a catch-22–either play into the system, or you will be marginalized.
The other choice would be to detach from the dysfunction, heal the trauma and negative self-beliefs from that oppressive relationship, and be free.
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