The Power of Notes in Psychiatric Settings
I want to explore the challenges of telling other people’s stories in the context of psychiatric treatment and mental health services, and the potential difficulties that can arise. And to do this in as dispassionate a manner as possible. I’m thinking primarily of the notes that are written about us when in psychiatric inpatient care. Although it could also apply to any notes written by professionals about us, which are subjective rather than factual or scientific. In psychiatric treatment professionals have the power to diagnose and prescribe treatment, under compulsion if deemed necessary. And mental health acts are in place to ensure that the treatment goes ahead while the safeguards contained within the act are there to protect the rights of people who are under the act.
The compulsory nature of psychiatric treatment and the power of the notes mean that people prefer not to engage with psychiatry if at all possible, and would rather discuss their mental health needs with a GP (general practitioner). Where they can be prescribed anti-depressants or benzodiazepines for low mood, anxiety, stress and anything other than a psychosis or nervous breakdown. The latter often requiring admission to a psychiatric hospital where voluntary can become involuntary, and a fast track to diagnoses of a disorder. Labels that stick like glue, are permanent and cannot be removed from medical notes.
I recently had a conversation with a senior clinical manager in psychiatric services about a situation that had arisen and which required clarification on my part. It was an interesting and useful phone conversation, once the emotion got down to an acceptable level for both of us. The subject of note-taking in psychiatric wards came up and the manager agreed that these were not well written by nurses, on the whole. And that many attempts at training nurses in note-taking had been undertaken but there were still issues with notes that were more about opinions than situations, and behaviours rather than factual representations. The psychiatrists’ notes are usually brief and to the point, with descriptions of presentations, diagnoses and medication requirements.
The psychiatric nurses work to these notes and are compelled to carry out the instructions to the letter. It’s easier to be clinically detached if you are not in a close relationship with the person you may have to medicate under compulsion, or forcibly drug. The psychiatrist who is scientifically trained has the authority to diagnose and prescribe. And the diagnosis may be inaccurate or unscientific, because the psychiatrist doesn’t have all the facts, might not know the patient well, and has to decide on a course of action quickly so as to avert or contain further mental distress. For no-one likes to see another person in distress, if it can be helped.
Therefore when a nurse has to give compulsory treatment to a patient who is unwilling there is likely to be all sorts of emotions going on, in both nurse and patient. Especially when some of us do not want to take the psychiatric drugs and think this even when in our right minds. It’s not necessarily a matter of anosognosia (lack of insight) but knowledge of what the drugs can do, their side effects, how they make you feel, and the difficulties of tapering and getting off them completely. In my experience, being mentally distressed didn’t make me more conformist or willing to swallow the pills. It might be different for others who like and feel safe within a psychiatric setting. Who are happy to have their stories told by professionals and to abide by the decisions made, and actions taken.
The friction arises when there is a difference of opinion between patient and psychiatrist, a breach or chasm that the nurse has to bridge. And it takes more than a spoonful of sugar to help the medicine go down. When mental distress becomes mental illness or mental disorder and a reason for considering compulsion. A quick fix solution in a busy mixed gender ward filled with acutely ill patients at various stages of distress and presenting differently. In the mix there may be substance misuse issues and criminal (offending) history, victims of abuse and perpetrators, the depressed and manic, anxious and obsessive. Each and every patient with notes that have one thing in common – a list of prescribed psychiatric drugs. And nurses who have the task of administering them, by pill, potion or injection, and writing it up in the notes.
In Scotland there are a number of initiatives ongoing, to bring about cultural change and improvements to patient care. This Case Study demonstrates a collaborative approach taken in a mental health setting – “In Angus Mental Health Services we worked with Releasing Time to Care (RTC) to make the links between Rights, Relationships & Recovery (RRR), Scottish Recovery Indicator (SRI), Patient Safety and Leading Better Care (LBC).”. And feedback from service users “91% of service users asked state the care we provide is excellent or very good, with 88% feeling that staff focus on their strengths and hopes when planning towards their recovery. 85% of service users feel they understand their medication and its effects. , previously this had only been 51%.”.
I want to believe that improvement initiatives will not only bring about positive changes in psychiatric inpatient care but will have an impact on the writing of notes. So that a person entering the psychiatric system does not have to fear that their story will become subsumed by a lifelong label of mental illness, and psychiatric drug prescribing. And that traumatic life events, common to us all, and displaying as mental distress, are not automatically pathologised in notes, at the stroke of a pen.
Very good and important post. I can’t imagine anything true written in my son’s notes and these notes are following him wherever he goes. He ended up in hospital delirious, with a badly infected toe. The doctors didn’t take much notice of it and diagnosed him mentally ill. Once diagnosed, nobody listens to you anymore. The doctors are always right. I suspect that the psychiatrists realised after a while that may be that what I was telling them was true but in my experience psychiatrists do not apologise and correct their mistake: they panic and start closing ranks, covering their own backs-just in case- and make jolly well sure that the patient with a grievance is not taken seriously. Our GP was as bad as any of the psychiatrists.
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Thanks Alix. I agree with you about psychiatrists and GPs, and the closing of ranks.
I went for an eye appointment about 6yrs ago and remember the eye clinic nurse saying to me “I see you’re schizophrenic”. It was very annoying so I went to my GP to complain about it, then to the psychiatrist who I hadn’t seen for years. He said he would sort it. But it’s still on my notes, seemingly written with indelible ink.
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Posted by Chrys “It’s easier to be clinically detached if you are not in a close relationship with the person you may have to medicate under compulsion, or forcibly drug.”
Psychiatrists and assorted mental health staff demonstrate what masters of self deception they are when they fool themselves into thinking they can have a “therapeutic relationship” with someone they hold hostage.
It’s not possible to have a therapeutic relationship under those circumstances. The whole situation is psychologically toxic. Its not a surprise that any notes taken reflect that.
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Thanks for your comment Theinarticulatepoet.
I’ve been reading through some psychiatric ‘medical’ notes and they did seem like a work of fiction. Attempts to justify courses of action that can only be described as not therapeutic.
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I know someone who lost it due to drug withdrawal. Her notes from the Psychiatrist exagerate this and indicate she could be a danger to others, when she had not threatened anyone directly, though she had attacked a nieghbours door, though not the nieghbour.
My friend is very worried about the long term consequences of this. More people see these records and make serious decisoins about someones life than can see court records. In some ways a criminal record can be less damaging and less intrusive than a psychiatric one.
People can have notes that are so long they could form a book and yet the services can know almost nothing about someone’s life Time after time I talk to people who have used services for years, they tell me about the family violence, child sexaul assult and other truamas they have survived and yet the services know nothing of this because the person does not trust any staff sufficienlty to confide in them . This leads me to ask just what exactly are these notes for and for whose benefit are they written? Possibly so that if something awful happens the staff have something written down to defend themselves with.
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Thanks John – you make an important point about staff justifying their actions in the notes they take. And that when the compulsion or force goes ‘wrong’ then the case for it having to be done is built up.
And adult protection investigations in psychiatric settings are another bone of contention for me. Where statutory colleagues collude with each other to justify the behaviour of the ‘professionals’, and the voices of the vulnerable are silenced yet again.
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Great post Chrys, and perhaps the most important issues in the whole mental health debate, the subjective nature of diagnosis? You write;
“And to do this in as dispassionate a manner as possible,” yet I do believe this is the cause of so much confusion in the mental health field. That is, that our subjective judgments of others can never be dispassionate under any circumstances, the premise is an illusion, an oxymoron that our rationalizing mind manifests by denial?
Can we ever be objective and dispassionate in our subjective experience, when our subjective perception is based on varying degrees of emotive judgement? Like the pain fueled judgment we often use in our critical thinking about psychiatry, versus the contempt fueled judgment many in the mental health field and the general public often use in their critical thinking about the anti-psychiatry movement?
Is it humanly possible to separate the emotive wellsprings of our own needs from our “affective” judgment of others? You give a fine example of this tendency we all have, of judging others to satisfy our own emotive needs, which are consciously denied with the pretense that we’re just being “matter of fact” or objective?
“I went for an eye appointment about 6yrs ago and remember the eye clinic nurse saying to me “I see you’re schizophrenic”.” The clinic nurse had her own needs of “affective” judgement in affirming her sense-of-self, which of coarse she would deny if challenged about an inter-personal transaction of “top-dog, under-dog,or one-up, one-down?” How we define a sense-of-self, as much by an “affective” judgment of what we are not, than a perception of what we are? I’m sure you were made well aware of her emotive “tone” as she uttered those words of “affective” judgment? (hope I’m not being sexist in assuming the nurse was a she?)
I suggest that beyond the ethics of best practice guidelines which like love, is a wonderful notion in theory yet thoroughly problematic in practice, we need to acknowledge the very real emotive needs of the individuals “passionate” judgments in all human relations?
For example, bipolar disorder is also known as an “affective” disorder and there is enormous confusion about exactly what this term means. Consider;
“Affects as Passions and Actions:
The notion that affects are invaders that work against our true nature is expressed in the early modern understanding of “passion” as a pacifying force opposed to action, meaning the activity of the soul. (true-self) Up to and including the seventeenth century, to be the “object” of affects is to be passive in relation to them. Such passive states are contrasted with those in which one is active. Thus, when Spinoza talks of an adequate cause, he means a cause that accounts for actions that take place within us or that follows from our nature. On the other hand, “we are passive when something takes place within us or follows from our nature, of which we are only the partial cause.” Passions may work against actions and actualization.
Passions and passionate judgments are passive as a result of being “affected by the world around us.” We are not acting to actualize our distinctness, but reacting, and in this sense losing the initiative relative to the things that affect us. Yet it is the peculiar nature of such pacifying affects, that they also “affirm” the ego and individual judgments. The distinctness of our individual judgments depends then on the extent to which we are pacified by various affects, and how far this passification or resistance to it, marks one person as different from another. It also depends on the soul or anima that resists those passions.
Aquinas tells us, “evil cannot be known simply as evil, for its core is hollow, and can neither be recognized nor defined, save by the surrounding good,” which fits in with Lacan’s psychoanalytic definition of the ego as nothing but “lack.” The notion that pacifying passions work against the soul or form they affect, is also a statement that the essence of the self is something other, something distinct from the affecting passions. “It is this distinctness which comes to be lost.” While passion as passivity and action are retained as key categories, they are recast in a mechanistic worldview which “explains nothing,” Descartes action, rather, is the transfer of motion from oneself to another, and passion is being acted upon.
With this mechanistic turn, it seems that bodies have a “power to resist change,” as well as the power to impart motion. For Descartes, the soul is not the form that is the body’s “affective” power, it is the capacity to think. While the soul exists, “it is always thinking,” yet as it thinks it loses more of the physicality it once had. The eighteenth century marks a shift, instead of being reactions to invasions from something external to the self, passions become the very activities of the mind, its own motions.
The term “feeling” which used to be allied with sensation, has become a victim of our lack of precision in “affective” language. No distinction parallels Aristotle’s between our emotions and sensations. Passions or “affects” now claim to be a class of feeling, rather than something discerned by feeling. They seem to be part of one’s self-contained energetic motivation, and the original understanding of passions or affects as pacifying is lost.” Excerpts from “The Transmission of Affect” by Teresa Brennan, PhD.
“I see you’re schizophrenic,” said the nurse, prompted by the largely unconscious need of a typical ego defining, sense-of-self? As the late Teresa Brennan points out;
“Passions and passionate judgments are passive as a result of being “affected by the world around us.” We are not acting to actualize our distinctness, but reacting, and in this sense losing the initiative relative to the things that affect us. Yet it is the peculiar nature of such pacifying affects, that they also “affirm” the ego and individual judgments. The distinctness of our individual judgments depends then on the extent to which we are pacified by various affects, and how far this passification or resistance to it, marks one person as different from another. It also depends on the soul or anima that resists those passions.”
And as you rightly point out “In my experience, being mentally distressed didn’t make me more conformist or willing to swallow the pills. It might be different for others who like and feel safe within a psychiatric setting. Who are happy to have their stories told by professionals and to abide by the decisions made, and actions taken.”
I admire your passionate resistance Chrys, and I ask you if its really possible to be dispassionate about the most emotive issue in all human affairs? Is it the “illusion” of a dispassionate judgment in mental health diagnosis, which is the curse of psychiatry in its self-soothing needs, of being seen as a proper medical science?
Can we hope to gain a holistic understanding of so-called mental-illness and its effective treatment, as long as we continue to rationalize its emotional aspects, by denying our need to judge others, as a vital aspect of affirming our own sense-of-self?
Best wishes,
David Bates.
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Thanks again David – you’ve given me much to think about.
I suppose we are all in a resistance movement (Wikipedia – “A resistance movement is a group or collection of individual groups, dedicated to opposing an invader in an occupied country or the government of a sovereign state). And I hadn’t thought deeply of it in that way before.
The nurse was a woman, a young person, who was only reading the medical notes which she took to be the gospel truth. Written by ‘experts’. I was very annoyed, not at her, but at these subversive notes going everywhere and confronting me at ordinary medical appointments. I am determined to get that diagnosis off my notes and will keep bringing it up until they do something about it. Take it completely out, scrub it.
Being passionate about anything seems to be a problem for folk in the mental health world. And I’m not just meaning the ‘professionals’. When I first got involved actively in mental health stuff in 2008 many folk said I was “scary”. It was very odd as all I was doing was being myself and saying it how it is.
I was 56yrs old and had been a community development worker for over 25yrs and hadn’t heard that before from anyone. I’ve always had passion in my convictions but it wasn’t an issue in other community settings. Why should it be a problem in mental health activism? Your passage on ‘affects and actions’ is thought provoking for me.
I have never accepted the rule of psychiatry except when I was forced to. And when I was able to then I broke free. Because I never believed in what they were saying or doing, it didn’t make sense. It’s got more difficult to break free, because of the cocktail of drugs used to control and sedate, and the plethora of diagnoses and labels. All of which tie a person in to the psychiatric system like in a spider’s web, caught up in a sticky substance.
We do need to act rather than react and I think this comes with life experience, learning by our mistakes and trying it again in a different way that will have a better outcome. Fortunately we never stop learning and community education, in which I was trained, promoted ‘lifelong learning’. It’s a great mantra and one which I follow wholeheartedly.
Thanks again for your comment, Chrys
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Ah yes, notes and trying to get them changed or something removed. I’ve known that one too.
I had a really horrible judgement against me in my mental health recoreds. I had to get another, “expert,” to do another assessment and have this added to my notes. I don’t think it is possible to have anything removed, just added too.
I know several people who have been annoyed by this. I know a woman who wants the diagnosis of “Personality Disorder,” removed and replaced with the diagnosis, “Complex PTSD.” I don’t know if she got this. It would certainly be easier to live with because it can be easily read as, “This person finds life very hard because they have had a very hard life,” where as Personality Disorder is just a sophiticated insult which can be interpreted as, “A difficult, manipulative, ungrateful, moody cow,” and often is.
So I wish you luck with getting the damaging diagnosis removed but I suspect, unless you are prepared to take serious legal action (the Eupropean Court of Human rights for example) you might have to make do with an additonal note and re-diagnosis with something like stress-related psychotic crisis – fully resolved.
Good luck.
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Thanks John – your advice about a re-diagnosis is useful – I did try this a few years ago and thought it had been done but apparently not.
I agree with you about the personality disorder label and have said the same thing about it myself. It’s a wonder they haven’t tried to pin that one on me.
Engagement with psychiatry is a sticky one, like quicksand and being up to your neck in treacle. I couldn’t be bothered going to court about it and expect to get some change by other means. I do like a challenge.
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Great post Chrys.
Accuracy of facts is my gripe.
The “inability” to correct lies, sorry “inaccurate facts”, written in my medical files seemed near impossible fo me. It took over 6 months to correct the fact that I hadn’t had ECT – 6 sessions. During this time 3 different “professionals” questioned my denial of the “notes”. “Yes I know what the treatment is and no I haven’t had it and don’t want it!!!!” On the last occasion they even raised the possibility that I might be suffering “memory loss” due to the ECT. At this point I walked out before I said or did something I would regret. I later find out this “professional” added to my notes: uncooperative, storms out when challenged.
My only guess at how this error was made is a typo, CBT – 6 sessions became ECT – 6 sessions.
Upon raising this with my GP, she said she rarely read notes that were 100% accurate.
We can’t win.
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Thanks for sharing Ddaved. You could write a comedy script based on your experiences re CBT/ECT. The truth is stranger than fiction.
But it’s no joke when these fictional notes are used in treatment of family members, which is what recently happened with me. As in, my diagnosis affected their treatment, or at least that was their excuse for the nurses’ behaviour and for bullying me. Saying in the notes that I, the carer, was difficult and demanding. Because I challenged their ways of working.
They keep the labels in to have control but that’s only because they can’t control our minds or our wills, only our bodies. And the psychiatric drugs are tools to control the mind, or so they think. But I’m not convinced as all they did was make me unmotivated and sluggish. When I got going with stuff then I could taper the drugs and recover.
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The whole idea of labels is a convenience for doctors, not even coming close to describing the people we are, particually the PDs. Labels only embed the stigma of a lesser person upon the diagnosed. I know who I am, I don’t need someone to tell me what I am. You may have guessed I don’t like labels.
And more “stranger than fiction” …
Diagnosed Borderline PB while taking Effexor. Agitation, verbally aggressive, uncooperative …
Don’t they know the side effects!
While a “voluntary” inmate, sorry that’s inpatient, with no history violence, restrained by three large security officers while given sedative injection, after refusing the tablet form.
A life long friend, now a police office, has made subtle suggestions, about keeping certain thing out things out of my file/record. That is disturbing. Once “crazy” always “crazy”? I don’t think so.
Nurses are put in a no-win situation. The easier option is to play the power game with inpatients, refer to the rule book then defer to the Psychs. The tougher, but more productive choice for nurses, is to assist the inpatients with their immediate, day-to-day difficulties on the ward, or even just sitting with them and listening. Not just hearing, but listening and supporting. Earning trust and working with inpatients results in positive results. One nurse even went as far asking me what I would write in my notes, then expressing her views, we ended agreeing what was fare and reasonable. This helped enormously with trust, even if it did bend the rules/ethics.
A good nurse is worth their weight in gold and their favorite chocolate as a thanks on discharge.
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It’s good to hear about the negotiation you managed to affect with one nurse and I think this is the way we need to/have to go. Together with more of the listening and supporting as you mention.
I agree that the nurses are caught between the devil and the deep blue sea. Having to make the treatment happen with often non-conformist patients. It must be difficult to maintain or even create trusting relationships
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Hi Chrys,
I found you on a FB post of Mad in America. I was picked up by cops in dec 1999 and after a trip to the local hospital where a so-called court was set up and I obligingly fell into the psyche system and i was transported to the local state hospital where courtesy of the state, I spent Christmas, a total of 50 days. Now, 14 years later I am symptom free and drug free. But I am sure I have a label following me around because I was unable to get medical insurance due to the bi-polar diagnosis. What I have to share is a journey from a physical symptoms with illness that were overlooked to a healthy, and happy 65 year old. In 2000, after the symptoms that brought the mental illness label abated, I went to massage school and now own a lucrative massage business with a partner and 56 employees. I was blessed with an instructor who was 50 plus years old and and experience intense stress with the death of her young daughter. I picked her brains in class and developed a love for alternative medicine. I learned a lot about the different systems of the body and my voracious propensity to learn as much about why I fell into the mental health system had me searching the Internet for answers which have come to me in blessed ways when needed.
Is there anyway I can communicate with you or anyone else to pass on the info I have learned and continue to refine?
I appreciate this forum so much as it has reignited my goal of passing on how I beat the system that said I would never recover or be able to NOT take meds all my life!
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Hi Chrys, re; ‘lifelong learning,’ it seems that since the rise of mass education after WWII, lived experience and the very notion of the getting of wisdom has been set aside for the “gospel truth” in an educated learning, and the unnatural power of “objective logic.”
The 1980′s seemed to be a decade where this shift to worshiping the power of education and objective logic, over wisdom took flight and look where we are now? The EU and Europe on the brink of collapse and possible war, Vince Cable warns. Which reminds me of an old friend who would try to guide his extremely bright university educated child with notes of lived wisdom, about the non-obvious and non-objective nature of real-life experience;
‘What would you know! You old fart!’
‘About half as much as I “thought” I knew at your age’
As they say, health and vitality are wasted on youth, as it stumbles around in the blindingly obvious, while trudging along the road to Damascus (not a blinding light, but the slow process of experiential wisdom, told in dramatic form to gain effect/affect)? Which leads me to my assertion that “the system” we think we see “out there,” is unconsciously projected from within? “Unconscious,” being a term curiously absent from this webzine, which likes to think its discussing the reality of mental illness? Yet in your fine reference to resistance, do we see the mirror projection of “internal state” onto the notion of “sovereign state?”
“I suppose we are all in a resistance movement (Wikipedia – “A resistance movement is a group or collection of individual groups, dedicated to opposing an invader in an occupied country or the government of a sovereign state). And I hadn’t thought deeply of it in that way before.”
It certainly takes time and a less obvious, less objective “sense-of-self” to digest what people like Brennan are trying to articulate about human nature and the power of “affect,” especially how much we “need” to deny the affective nature of the body, to maintain a general societal calm? Perhaps one of the best practical examples of natural and non-objective power is “the feeling of being stared at,” for which, like the placebo effect, there is no objective explanation. Those of us left with the nervous hyper-vigilance of traumatic experience, are also noted for our heightened abilities to affect others, As you point out with;
“When I first got involved actively in mental health stuff in 2008 many folk said I was “scary”. It was very odd as all I was doing was being myself and saying it how it is.”
In my youth, my best friend told me I seemed to be able to frighten people just by looking at them, which I’ve since come to understand as the well noted intensity of the 1000 yard stare, as trauma’s “unconscious” left over hyper-vigilance, or trauma’s after-effect? So is my non-obvious notion that “the system” we think we see “out there” is projected from within each and every one of us, simply crazy? Just what exactly is it that we resist in our individual need for a just cause? What is it, that we’re fighting to keep out, and just where exactly, is the system that we so obviously need to transform?
An obvious intellectual awareness can advise us to resistance and even to revolution, while all the great teachers advise the wisdom of surrender? Sensing “what is,” rather than just seeing what is so blindingly obvious “out there?” Consider the “cause” of resistance in the notion of defending a sovereign state and opposing an invader, as an “unconscious” projection from within;
“The notion that affects are invaders that work against our true nature is expressed in the early modern understanding of “passion” as a pacifying force opposed to action, meaning the activity of the soul. (true-self) Up to and including the seventeenth century, to be the “object” of affects is to be passive in relation to them. Such passive states are contrasted with those in which one is active. Thus, when Spinoza talks of an adequate cause, he means a cause that accounts for actions that take place within us or that follows from our nature.” _Teresa Brennan.
I guess what I’m fumbling to articulate is an ability to “note” the non-obvious, when we find ourselves in stressful situations, and get lost in the “common need” to deny that anything “unconscious” is actually going on?
Do we “need” a revolution, a transformation of the system “out there,” or more realization of the unconscious system within?
“The Power of Notes in Self-Realization” perhaps?
Best wishes,
David.
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Thanks David, more interesting comments. I hear what you’re saying about ‘knowing yourself’, or I think that’s what you’re saying.
I think we need both system (outer) and inner transformation. A bit of both or a lot of both. Regarding having a cause, I’ve always been that type of person who is rushing ahead with ideas or ways of changing things for the better. It’s just who I am.
Lifelong learning I see as something different from education, although there are intersections. School wasn’t my most favourite place although I did well enough there. I preferred playtimes and school holidays. Adventures and discoveries. Reading and writing.
At the same time I’m a very systematic person, the PC and internet world suits me quite well, and I like the challenge of framing and then reframing situations. Like a chess game, although not just logic but also the practical. I like to try out things that might not work and can cope if it doesn’t work. It’s the doing of it, the process, rather than the outcome. A community education perspective.
I think we have to find out what works for us and in that way we can remain true to ourselves. If that makes sense.
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GP’s might not prescribe anitpsychotics in the UK, but they are handing them out like candy in Australia. 90% of psychiatric diagnosis in Australia is by GP’s and they are paid extra money from the government for it. They are paid to write up mental health care plans, so we don’t ever need to see a psychiatrist. They are supposedly fully trained to assess and treat ALL psychiatric conditions and it is only when we become treatment resistent that they are supposed to call in psychiatry.
The most inaccurate notes are those by GP’s who have no idea of what they are doing.
The fact remains that while psychiatry exists, and people believe in fictional brain diseases then lies in notes will exist. The best proof of that was in Rosenhams “On being sane in insance places”. It really does not matter how accurate the information is it is how they interpret it that all changes.
I have in my notes that I had anger issues. Of course they did not say what that aggression was. It was a GP that wrote it. I was in a dissociative state and was not responding to questions I was being asked. Hence I was non complaint and had anger issues, as I would not speak to her. No regard was given as to why I was not speaking. But even if they said i was not speaking it would be taken to be something else. If you speak you are manic, if you don’t speak you are depressed. Everything we do is seen as a sign of our illness and it always will be. They are trained to see everything we do and say and think and feel as part of our incurable brain disease and nothing is going to change that. You cannot develop a theraputic alliance with someone who sees you as less than human, and who has the power to lock you up, take away your clothes, put you in solitary confinement, etc, etc, and who calls everything they do as medical treatment!!
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Hi Belinda – thanks for your comments from the Australian perspective. It’s interesting to hear about the GP notes there and their prescribing. And your experience of all behaviour being pathologised and attributed to ‘mental illness’.
The power imbalance is very unfair and oppressive. As a carer when I started challenging the care of my family member in a locked ward then I was badmouthed in the notes. They dredged up my diagnosis from years before, even though I’d recovered, making a mockery of the government/statutory agencies’ hijacking of the recovery movement.
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Chrys,
Inside every emotionally distressed patient is a whole person waiting to come out.
The most important “notes” during the entire ordeal are the ones deep inside the person suffering.
If only psychiatrists would become cognizant of the importance of allowing a person to go *through* the suffering and develop a sense of *trust* that a human being can not only survive the episode, but come out stronger *because* they went *through* it (not around it).
Psychosis is an *event*, not a person!
Duane
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Thanks Duane – I think that people don’t like seeing other people in mental distress and want to relieve it for them. I agree with you that it would be better if we could be allowed to come through it rather than be brought out of it by strong psychiatric drugs.
For me these drugs brought on worse problems, gave me low mood which meant they gave me more drugs, and so on. Better to come out of a psychosis more gently and naturally. And we would need a safe place to do this, not a psychiatric ward which I found anyway to be very traumatic and unsafe. Full of people, men and women, from all sorts of backgrounds with all sorts of issues. Very scary.
And I agree with you that psychosis is a transition, an opportunity for growth. For me, after a psychosis, and the obligatory psychiatric treatment then recovery, I became a stronger person, had more insight. If they were seen as rites of passage or journeys to enlightenment then we might have a different sort of support during and through the experience. Breakdowns or psychoses would be welcomed and even looked for.
I remember in the 60′s, when the Beatles became famous, many celebrities were using LSD and other drugs to bring on out of body experiences. Flower power and Woodstock in 1969 when I was a teenager. Psychedelic images, fashion and music. A sort of peaceful revolution.
Now there’s a clamp down on recreational drugs while those of us with natural out of body experiences are drugged up. It’s a topsy turvy world right enough.
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I agree 100 percent.
Thank you, Chrys – for all you’re doing to make people aware.
Duane
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Hi again, Chris
A few weeks ago I received my medical records (only after requesting them three times over the years. My first two requests were completely ignored).
The notes are riddled with errors. I expected as much, but I was still surprised by the extent of it. After reading the notes I felt quite shell-shocked. I won’t go into all of it – and I do accept that parts of the notes are true, and that I may have forgotten some parts of what happened. There are parts, though, where the professionals have certainly manipulated the notes to cover their own backs – which I also understand, although obviously I don’t appreciate it. And there are other parts which simply don’t make sense – they are badly written, they contradict themselves. Again, I can deal with this.
The notes from the period of my third and final breakdown, after my daughter was born, are shocking though.
I was sectioned from the maternity hospital – my daughter was in intensive care and I became psychotic. I stayed in the hospital to be near her – I didn’t trust the nurses to take care of her; I wouldn’t rest and I insisted on breastfeeding her and didn’t want her to be bottle-fed; she wasn’t getting properly nourished. I am grateful really that we both survived – I will never be grateful that I was sectioned, but that was the only way the medical people saw to improve the situation, and at least we did both survive.
After several weeks, she was brought to join me in the mother and baby unit of the hospital. Still, I didn’t trust the nurses and insisted on doing everything for her myself. I did feed her from a bottle though – I was in touch with reality by then. I changed her nappies and her clothes constantly – wore myself out with it all.
I was terrified the whole time I was in hospital, in case my daughter would be taken from my care. It’s a long story, but eventually we were allowed home, and from that point on I flourished.
I was absolutely astounded to read in my notes that while I was in the mother and baby unit I refused to look after my baby, and insisted that the nursing staff should do it for me. Conversations are recorded in the notes where I apparently told the staff it was their job to look after her, not mine. They also report me going off for walks without my child.
Luckily for me, my husband visited me virtually every day for the three months that I was in hospital, and stayed for as long as he could. He remembers how devoted I was to our baby – indeed, how my refusal to let others help me care for her (because of lack of trust) was part of the problem. He laughed outright at those parts of the notes.
But why would these things have been written? Might I actually have lost my child if these reports had been shown to social services, and believed by them? That strikes a deeper fear into me than anything else about those notes – I know that professionals are capable of manipulating records to cover their own backs, but this goes further, and it could have ended it complete disaster.
At the end of the day, I know I need to move on. Sometimes I regret becoming involved in mental health activism, because it is in some ways a losing battle for those of us who have already been diagnosed. By bringing attention to our diagnosis we are not doing ourselves any favours.
And I will move on – eventually I hope to stop writing about mental health and just write fiction. How relaxing that will be! But first I am going to finish the book I am working on about mental health recovery – because I want young people going through what I went through twenty-five years ago to always hold on to hope for their futures, hope that I lost for some years.
Maybe one day people will stop diagnosing other people with mental disorders – the existence of this wonderful website is probably the most important step in this direction that I have seen so far.
Thanks again for your work, Chris (and all the other experts on ‘Mad in America’.
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Hi Louise – thanks for commenting again and for sharing your story. I hear what you”re saying and can identify with the experiences. Although in 1978 and 1984 when I had postpartum psychosis my baby was at home and I was in the psychiatric hospital.
In some ways this might have been easier, in that it kept the horrors of the psychiatric treatment separate from my motherly role. But it was difficult being separated from my baby sons, who I’d been breastfeeding, on both occasions. The psychiatric system is very unsuitable for mothers in mental distress.
You highlight an important point about the underlying threat of the notes, the power to disrupt families and come between a mother and their child. It happened to me recently and my child is now an adult. This injustice strikes at the very heart of society and at human relationships. The involvement of social work departments in psychiatric services should be a safeguard but, in my experience, was more of a collusion with the system.
This could be why you had every reason not to trust the system when you were in it with your baby. I think this demonstrates good mothering skills and shows your strength and resilience, even when in mental distress. And the fact that you had the courage to look through your psychiatric notes is another plus. I’ve still to look through mine and know that when I do I will be very annoyed and want to take action. It could be very time consuming so I may not bother.
However I have been looking through my son’s notes and it’s made my blood boil. Much swearing and writing of Emails to so-called professionals, regarding fictional accounts and badmouthing of me in his notes. A maligning of my reputation because I challenged their dehumanising treatment and dared to face up to the bullying and intimidation.
Well done to you for daring to write your story down and I know what you mean about regretting becoming involved in activism. I’ve thought the same now and then, but I’ve started so I’ll finish, sort of a thing. And I know that with my story going out on the internet it’s difficult to take it back again. I’m committed to at least having some control over it and learning as I go how to overcome the difficulties and make the best of it.
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Hi Chrys, thank you for this important essay on notes.
The devil is often in the details, and for every unit of service time provided in the community or for treatments and shift reports in hospitals, notes are required.
Every note is a bit of potentially legal evidence that supports the medical model that pathologizes human experience. The care giving note writers must provide evidence that supposrts a given diagnosis.
This conformity over time can harden the heart of some caregivers. I have known some who began their years of service being very progressive and critical of the medical model, but after years of having to write about, describe and discuss people in those cold clinical terms, came to think about others in those diagnostic, de-humanizing ways.
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Thanks for your comment Michael.
You make some very important points about the note-writing in psychiatric circumstances. Firstly the legal implications of these documents that are seen as true accounts from the third person perspective, and even from the fourth and fifth person. As in one nurse can write something about a situation between another nurse and patient. Like the whispering game the truth gets lost in the telling of the tale.
My recent reading of psychiatric notes was like reading a work of fiction. And yet because a ‘professional’ wrote it then it must be true. Your point about hardening of hearts is relevant and I suppose is the way that the nurses and others are able to continue forcing treatment on mentally distressed people. If you remained fully human then you wouldn’t be able to keep doing it without becoming mentally distressed yourself.
I’ve recently been invited to deliver WRAP and strengths training to mental health nursing students, most of whom had been on my placements in psychiatric settings. I found that the 3rd year students spoke about wanting to change the psychiatric system but, when challenged by my personal stories of dehumanising treatment and the use of force, they were defensive of the procedures and of their future colleagues. The 2nd year students did not seem so defensive or so part of the system, yet.
Prof Phil Barker and Poppy Buchanan-Barker, fellow Scots who also live in Fife where I am, have developed the Tidal Model of recovery and nursing practice:
http://www.tidal-model.com/
which aims to give the power back to the people/patients. Talking about mental distress and problems of living rather than illness and diagnoses. Concentrating on a person’s story, their voyage of discovery, recovery and reclamation. I believe this nursing model helps put the patient/person back at the centre of psychiatric nursing care, restoring them to their rightful place as experts in their own lives.
I’m hoping that the hospital near where I live starts to use this model and to really put person-centred practice into action. Along with this I’m also campaigning for other improvements, including environmental change outside and inside the wards, for the benefits of patients and family.
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My notes are old,from more than 30 years ago.My diagnosis was sprung me,roughly a year ago.Schizophrenia,not that I knew any of it and I had a happy life in ignorant bliss.Accessing my notes was quoted as expensive.Only after my discharge from local community care was I offered by my psychiatrist to view excerpts.I wrote a letter in reply saying “get knotted”,but in a much more polite way.After all these years I was a numpty to all the medical professionals,while previously I was just me.All of a sudden.It was suggested that I should join this and that,but after having wasted one year on therapy speak in some sort of group I have called it quits,have decided to ignore my diagnosis and carry on as I was before.I attempted to have my label scrapped ,but to no avail.I’m stuck with being a most miraculous schizo,not on drugs,but if I want to I can have them.I can officially cut them to bits and experiment.Help me to sleep at times.My nurse said I should not bother much with the diagnosis,but yet I cannot get it scrapped.Bad lot,psychiatrists.Prejudiced by old notes.Prejudiced full stop.Either way,I choose not to disclose my “cancer of mental health” diagnosis to anyone,not necessary in view of my personal circumstances.Nobody would even guess.But it has given me grief,I now detest psychiatrists with a vengeance.One place of help I would never approach again.I don’t need to either.I’m quite fine.But it has been an experience of cruelty and total disregard toward everything I am and ever have been.
And I wasn’t even ill,was relapse prevention.No relapse happened.Just wouldn’t happen,and barely any drugs,not at a level that can not even be dispensed.
Lesson learned.Don’t believe a thing those “doctors” say.Just a bunch of old paper notes of little validity.And ,me of course.Not giving a damn.
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Hi 4everdelayed – I’ve just noticed your comment, apologies for delay in responding. I agree with you that the notes aren’t useful or of worth, and can do a lot of damage in the ‘wrong’ hands. Calling your label ‘cancer of mental health’ is very apt and feeling like a ‘numpty’, well I’ve been there and still sense that the so-called professionals view me in this way. It’s very irritating.
Getting out is the way to go. All the best to you in the real world, Chrys
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I wish to elaborate on groups,I am referring to those within the context of ” social things to do”.Not psychotherapy.
Sound like a formula,are run according some formula.Get out while you can before becoming a concept person.
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