In the midst of chaos there is opportunity” Sun Tzu
By June 2013, during the usual fail-replace-repeat treatment ‘plan’ of the state behavioral health providers, I found myself in the perfect storm of bad drugs and deadly ‘care’.
Within a 2-week period, it involved Risperdal, tardive dyskinesia-both eyes, Lamictal, NMS, the ER, more Lamictal, anaphylaxis, ER again….clubbed like a baby seal, to the ground.
I had requested, then demanded a psychiatric MD. I kept getting scheduled with the same PA prescriber. I finally stood up in the packed waiting room and loudly said NO when summoned. The other clients froze; boy, was I gonna’ get it. “It” was the Crisis Clinic in the back of the building where police dropped off “problems”. I had been warned once by a clinic nurse, to never end up there. Yikes.
I was yanked into an empty conference room with the prescriber and a supervisor, an attempt at intimidation. The PA proceeded to ‘explain’ himself. I told him to SHUT UP. He did. The supervisor in filthy t-shirt and shorts, tipped his considerable bulk back in his chair, hands clasped behind his head in a studied, insouciant attitude; he was amused. “What do you want, what’s your beef? You weren’t in any danger, it’s not a big deal.” He grinned.
After I finished explaining what I required regarding his response to my unfortunate situation, I politely questioned his commitment to his job.
The chair came crashing down, his face beet red. I apparently had upset him. I stood up and walked out…just in time as I had been decompensating for 2 weeks, deep in withdrawal, with a rebound ‘chaser’. I needed to get home right away; I had a tiny window of daily function.
He was insignificant in the larger picture; my strategy was 1) get qualified, expert medical help-ASAP and 2) get the hell away from this toxic dump-ASAP.
They were on notice.
“The most common way people give up their power is by thinking they don’t have any” Alice Walker
I only had 1 or 2 hours a day that I could sit up, scour the internet, send e-mails and make phone calls. I spent 22 hours a day for the next 4 months, on my side clutching a pillow, trying to remain calm and resolute. I put my car keys away and couldn’t walk without difficulty.
My cat was concerned about us.
Nevertheless, I used my ‘up’ time contacting outside ‘advocate’ agencies for advice and support. Reaching out to a variety of organizations, legal services of all kinds, and appeal agencies was a minefield of careful language. I was at an enormous disadvantage; they expected nothing less than calm, deliberate, evidence. Unfair, unreasonable, and unrealistic. Most were connected to the state. The clinic staff were viewed as embattled saints. I was viewed as ungrateful, a malicious trouble-maker, hurting the people that were attempting to help me.
The irony would kill me before anything else.
My strategy was to finesse the high school case managers, on-line educated PA’s and supervisors, and pick my way through the IED’s of procedural paperwork placed in my way.
Their vulnerability was their unanimous perception of lack of respect. Nobody appreciated them and they worked so hard. Many exhibited a disturbing, casual meanness of spirit, reminiscent of the flawed “Stanford Prison Experiment”. I saw it frequently in the waiting room; it was bullying and at times, thuggish. They were acting-at-will, with no objective supervision, mental health being the step-child of the state budget. The clients were deemed irrational, annoying irritants in their day.
It was irrelevant; I would remake myself into the opposite of that, going ice-cold inside with a great big smile. I was going to sell them by using their own psych methods; mirroring, a common sales technique, and vocabulary they felt comfortable with; meeting them where they were. I would be reassuring, outwardly respectful and civil. I would talk to them just a little over their heads; (not a heavy lift), just enough to flatter them, not to show off or embarrass them (“She thinks I’m smart!”). I would use familiar handbook terms, their work vocabulary (“She recognizes my professionalism!”). I assured them we were on the same page, (“I’m reaching her!). I let them win minor points; I gently, deftly won the bigger ones, always expressing gratitude for their guidance. Mirroring was fun.
I wasn’t always successful controlling my disdain and anger. But I learned about myself and them at every interaction. I made it count.
I grasped the synchronicity of the law and psychiatry. It was not about being right, it was about being effective and in this system, COST AND LIABILITY CONTAINMENT were key to understanding Every. Single. Thing.
I was a quick study. I called 2 weeks later and politely, firmly, respectfully and with a soupçon of deference, insisted on speaking to another supervisor. I explained quietly, confidently who I was, followed by a very concise ‘highlight-film” synopsis of my situation. I used the words safe and safety, unfortunate, hospital records, evidence (photos), quality-of-care, unresponsive, appropriate notifications, and reasonable. I shared my tactics going forward to safeguard my health: unlimited, frequent visits to ER’s as I felt poorly all the time. I didn’t feel safe at the clinic, as my file illustrated. No snark, no drama, no anger; reasonable, calm, appropriate….high stakes poker.
This strategy spoke directly to enormous budget overruns caused by a patient going ‘off the reservation’. Also, the chance of an ‘outside’ medical entity being informed and causing complaint issues on my behalf were possible as I was calm, articulate, and credible. Her boss and their boss would bring the lumber down on all of them. “How did you let this happen?” It would impact their annual job assessments and paycheck. In this regard, I made it business AND personal.
I intentionally ended with a request that was completely achievable for her, offering her a win-win. She would be a hero, a problem-solver; I would be gracious in victory.
“I require an appointment with a psych MD, NOW. Thanks a bunch, Tiffany”.
She replied “You will have an appointment by end of business today”. And I did.
Game recognized Game.
When I showed up at my 4:30 P.M appointment, I was aware that this was a clear message I had 15 minutes to complain. I was prepared for this moment. An hour and a half later I walked out with the promise of another appointment. The doctor was the clinic director and never said a word as I precisely laid out my outline, ending with my specific request. I required safe withdrawal from a well-qualified psych MD that would stay to see it through to completion. I wanted vacation of my bipolar and SMI designation and I wanted paperwork proving it. My Plan B was the state gaining entrance for me to go to the Mayo Clinic in town and, of course, ensuring payment for those services; audacious, but reasonably presented. Plan C was that I walk, titrating myself in this state and taking my chances. The implications were liability issues should I fail in my withdrawal ending up hospitalized and an attorney taking an interest, as I was presentable (for 2 hrs.), articulate, with my files in order, my facts on a meticulous timeline. My personal history per the clinic’s notes was solid, stable, compliant, and accomplished. I WAS CREDIBLE.
I wasn’t begging for help; I was offering him options; this was a polite negotiation.
He scheduled an appointment that week to stabilize me. I was in very poor shape. He formally accepted me into his service-of-one, after asking me quietly “What are your intentions?” I didn’t flinch, took a beat, and replied quietly, “I haven’t decided yet”. He never addressed ‘it’ again. This was a little dance; a hybrid of Queensbury Rules spliced to Robert’s Rules of Order. We were very polite and all business, with a smile.
He quickly ascended downtown to the corporate office as the CMO/VP of the largest behavioral health provider in the state and for 2+ years he committed to me as his singular client, with the caveat that if his position became more demanding, he would be obliged to stop. It created additional anxiety and I never stopped developing options for those years, just in case. This wasn’t a done deal until it was.
For a long time, nothing he tried gave me relief and there were some notable bumps in the road. I told him I was ready to move towards my goals; with or without him, I was leaving. We met once or twice a month, usually 2+ hours, late in the day, often closing the place up. He would remove his jacket, loosen his tie and listen. I was acutely aware that I was there to convince him that it was safe (for both of us) and appropriate for him to grant my request; I was auditioning for the role of a stable individual with a reassuring GAF score. He didn’t speak much until the last 9 months when I requested him to start. We would text when he traveled or was busy. I didn’t overplay my hand; it was a delicate, unusual situation. He once noted “You have trust issues” to which I laughed and blurted “Look where I am”. I sensed he wanted to get this right.
In March of 2015, I finally asked… “Do you think I’m bipolar?”
He took a long moment; “You’re slightly depressed”.
BOOM, there it was….and we set an exit date for December. There were slow bureaucratic hoops I would have to jump through.
In December 2015, at our final appointment, I awkwardly handed him a copy of “Invictus” by William Earnest Henley; “I am the master of my fate, the captain of my soul” stuff; obvious yet on point. I had no words of my own that day. I said thank you and walked away with wobbly knees. At my car door, I turned to the cameras with a great big, immature, one-fingered salute…and quickly got out of there. Ooooh, what a bad-ass.
But look what I did.
“We must let go of the life we have planned, so as to accept the one that is waiting”. Euripides.
This is an experience that undoubtedly, many people can relate to.
Many don’t talk about their experiences because:
1. They are not here to tell their stories.
2. We are terrified of not being believed
3. Some people can not believe that experiences like this can happen
4. Don’t shift the blame on the med because I take it and it benefits me ~ a very common attitude.
We are the fortunate ones to still be here on this planet.
Telling our stories so that we can educate many about the harms and damages, these meds can inflict to our physical/mental well being.
We are alive.
We still have our mental faculties, intact and are hard wired for ‘balderdash alert’ with anyone or anything.
Not only did the meds that were prescribed to us, assault, harm and damage our physical/mental well-being, we then had to be:
assaulted, accosted by some professionals with their poker faces, nonchalant attitudes and endure a barrage of invasive threatening tests/procedures.
I have been poked and prodded, endlessly and relentlessly, until some could come up with a vague diagnosis of what I was suffering from.
Meningitis, mini stroke, depression ~ let’s spin the wheel and see what comes up today!
Better still, lets consult a magi to determine what you have.
The meds I ingested induced all the harm and suffering.
I then had to prove what I had.
An endless ‘witch hunt’ which can not only be dangerous but devoid of all human compassion and understanding of what it means to suffer unnecessarily.
Once you go deep into the rabbit warren there are no promises that you are going to come out intact!
In addition to this, I had to endure the maltreatment from some professionals.
I had to endure the barrage of assaults through the ongoing invasive tests/procedures and then I had to endure the futile labels, that serve no purpose.
The system is broken ~ Go out and smell the roses : )
We are just puppets on a string and they are the masters pulling our strings.
Some abuse their power and are in charge of your vulnerabilities.
The meds harm us.
Some professionals make money out of our vulnerable situations
Are we just diminished to cash cows?
I was being sucked into a vacuum of nothingness and all that was left was a veteran who had survived the darkness of shrewd medicine.
Finally, I was diminished to a pulp and blemished with labels or disorders that make me look of ‘not sound mind’, so that the blame was shifted on to me.
This is one heck of a roller coaster ride that I do not wish upon anyone however, a word of warning, if you come out intact, after all the abuse, assault, degradation, humiliation, shame and mal treatment, inflicted upon you, over an over again, you are ‘one of the lucky ones’ who managed to escape from the ravages of war-torn western medicine.
You maintained your composure, to get some support and assistance, from what you were malevolently going through.
I was ‘nice as sweet pie’ and still got nowhere with the horrid situation my body and mind had to relentlessly go through.
Playing the game is a waste of time because no one is going to side with you when they cannot visually see what harm or damages this med is inflicting on your physical and mental well-being.
They need the proof and evidence.
Your loved ones are a testimony of what you have been through.
Loss of income.
Not being able to do the work you once use to do without being labelled a crippled.
Being a spectator of your life.
Watching all you dreams and ‘joie de vivre’ go by because people believe you are depressed or have lost the plot.
I would rather be using my energy to be part of life.
Enjoy what life has to offer and embrace every challenge with gusto and courage.
We are the valiant ones not giving in to nonsense or follow the sheep type syndrome.
We are SURVIVORS!
We have had fireballs thrown at us, from different angles and have not had a chance to defend ourselves, during the trying and challenging times.
Now give us the dignity to recount how we felt when we were being mal treated and made to look like we were mentally unstable!
If you ingest these meds and you have an unpleasant side effect or an adverse reaction, please be prepared for the onslaught of what is to come.
You are going to be labelled a person without a sound mind.
And the list of labels and disorders that just does anything to shift the blame on your mental integrity.
The whole system is designed to make one look:
mad, dysfunctional, attention seeking, hypochondriac, depressed and the list goes on and on and on.
Once you are off the mouse wheel, of endless torture and ‘fun mind playing games’, you have to muster whatever dignity and courage you have to live the best way you can with what harm or damages result from these meds.
I call this the carnage of meds: trying to survive the relentless war-torn of meaningless western medicine.
You did the one finger salute. Good on you!
You knew that you were being played and no amount of ‘sweet, sugar, honey pie talk’ was going to have anyone side with you.
You walked away from the smoke and mirrors and realised that no one was going to give you genuine or sincere help for what these meds have done to you.
It takes a lot of guts and courage to stand up for yourself when you are at the lowest point in your life.
Meds assault + some professionals accost + invasive tests/procedures make your health worse = you end up losing everything (but your soul is re-born)
”The eyes of the soul of the multitudes are unable to endure the vision of the divine.” ~ Plato
The Stanford Prison Experiment was a supposed ‘mock up’ …
“How we went about testing these questions and what we found may astound you. Our planned two-week investigation into the psychology of prison life had to be ended after only six days because of what the situation was doing to the college students who participated. In only a few days, our guards became sadistic and our prisoners became depressed and showed signs of extreme stress. Please read the story of what happened and what it tells us about the nature of human nature.”
I turned to the cameras with a great big, immature, one-fingered salute…and quickly got out of there .. look what I did…
Thanks for your interest in the Stanford Prison Experiment!
As you may know, several bloggers have recently raised questions about the validity of the experiment. In the interest of open science and scholarly inquiry, I think it’s important to read their criticisms as well as the responses that my colleagues and I have offered.
You can explore this controversy, and many other topics, on the Related Links page of PrisonExp.org.
All the best,
WHAT HAPPENS WHEN YOU PUT GOOD PEOPLE IN AN EVIL PLACE? DOES HUMANITY WIN OVER EVIL, OR DOES EVIL TRIUMPH?
“I had no idea it would turn out this way” …
But look what you did.
Thank you. I admire so much your ability to document so clearly the shared hideous experience of so many. At times it seems like a nightmare which couldn’t have really happened. It is vital to have these first hand accounts which were previously covered up -pre internet by having mainly only ‘doctored’ accounts ,including the offensive and often bordering on the sadistic, published ‘case histories’ in self interested self promoting text books and journals. (The device of calling these ‘vignettes’ currently is hardly any different except that they have been cleaned up now more readers are aware of them). The Exception being of course the accounts produced heroically in self produced newsletters and group meetings and such by ‘user’/survivors’ especially in the 70s/80s.
I read some quotes by Solzhenitsyn who survived incarceration in a Russian Gulag -one is ‘abuse of the soul’ The abuse by psychiatrists and others goes right to the core of our selves and leaves scars for ever not least because they don’t have an understanding of the concept of to heal/to care for as well as ‘treat’ Solzhenitzen uses a tree metaphor ‘A tree with a rotten core cannot survive’. Psychiatry and its allies are rotten to the core and hopefully will either be felled by those who work to expose it or topple over and die. Who knows when though? To be honest Sozhenitsyn also said that we all have the capacity for evil – but although he may be wise in many ways i think this needs to be qualified – there can be no way of proving this one way or another and it is hopefully more likely that most of us have limits.
In 2013, my brain was NOT ‘snapping back’ THIS time; the fact that THAT was NOT a ‘talking point’ in my ‘medical treatment’ for 9 years SHOULD have been unacceptable in modern medicine. The lack of expert, accurate re-assessments in light of my ‘lived’ history was intentional & criminal.
This was a SAFETY issue they systematically refused to address. They were ALWAYS eager to discuss the possibility of ‘SELF-harm’. After 9 years, a different dosage, a different drug, a different ‘combo’ of drugs, and the re-introduction of past, failed drugs (4 & 5 times) is shocking testimony to the complete collapse of psychiatry’s ‘approach’ to what passes for diagnoses and treatment. It personifies the old maxim; ‘the definition of insanity is to repeat behavior, expecting a different outcome’…..by behavioral experts. I paid that price for them. The industry’s defined goal, RECOVERY, would never be achievable. This was the ‘long con’….keep changing the rules & moving the goal posts. She’s drugged.
I told my exit doctor “I have given out ALL my ‘benefit of the doubt’ cards; there were no more”. He asked me to trust a hand-picked staff member as a liason when we first engaged. At first, everything was appropriate. As the last year ticked off, she became the most compromised in the clinic; actively sabotaging my exit. It was Dickensian.
It appears I had become an obstacle in her ‘relationship’ with him..whatever that was. I wrote formal complaint letters to her clinic bosses and finally pushed my doctor (HER CMO/VP) to directly respond to the situation; he was reluctant & clearly uncomfortable. I finally achieved his admission (by text) that yes, she was lying to me AND him about ignoring essential paperwork that HE had ordered in my exit process months ago.
To placate me, he stated it would be an issue at her assessment. He brought me a small gift at our next appointment. Euuuw. His subordinants were undermining our process. Other supervisors had asked me to leave the waiting room.
If these professional, compassionate employees ‘believed’ I was mentally ill, what were they doing interfering with my accessing care? THEIR behaviors, as BH professionals, were profoundly disturbing, but continued unchecked, out in the open.
Being simultaneously blunted & horrified by the progressive, alarming uncovering, like a Russian nesting doll, of the vigorous commitment of the industry to keep my voice absolutely quiet, was overwhelming in my private moments.
Dealing with brain damage apparently wasn’t enough; I had to engage in a knife fight all the way out the door. My advantage was I knew “There are NO RULES in a knife fight”…coupled with “Revenge is a dish best served cold”. I am nothing if not patient.
The doctor had given me some Zen (texted) advice as I left “Be mindful of & live in the present”. Well, bless his heart…
He was hoping I would have no stomach for deep-diving into identifying how and why I was a decade-long survivor of a hit-and-run, the 2-ton truck driven by his industry. His ‘advice’ is disingenuous.
I take Tai Chi, practice QiGong, & drastically revised my diet AND pursue ugly, real-world facts that calm & inform me and give hope to others. My now-happy, almost-healed brain can do both, thanks.
At the end, in the clinic, I said to a select few, “I’m not going to die in this dump”.
The content and implication of that statement did not alarm them; they were highly offended by the term “dump”……as I staggered away, twitching, balding, & palsied.
Uncovering other nasties….reverting to the topic of lists and registers you may not know you are on – with far reaching consequences – I came across this whilst looking for something else entirely. A team at Southampton uni has (astonishingly) got past the ethics committee to create an ‘experimental’ register of children (3 upwards) with an ADHD diagnosis. There is some blather about improving communications but I find it impossible to discern what benefit there can possibly be in dumping small kids on a register, without their consent, which may have far reaching consequences in later life. Many of them may well turn out not to have ADHD – even if you accept the validity of such a condition in the first place. The implications of consent – by parents – who may have no idea of those consequences – is hair-raising. Parents trying to manage children with behavioural problems are generally at their wits end and, in my view, not in a good frame of mind to consent to anything properly. I find it especially gut-wrenching as I sat on an ethics committee back in the early 90s and we spent hours debating the problem of consent to participation in a research project. Most proposed projects got thrown out because the researchers hadn’t bothered to even consider it. But we had a beady eyed, unusually thorough and ethically immovable chair, who challenged them on such things as whether taking a mouth swab from a baby was, actually, a minor matter. They usually started to go very red at that point. When he retired it all went down the pan, where it has clearly remained. I cannot imagine his – and our committee’s reaction to this – well I can, and it would not have ended calmly.
The relevance of sticking this up is the widespread infiltration of the notion that it’s OK to put people and young children on a register without their knowledge if it is deemed to be ‘in their best interests’ – a weasel phrase if ever there was. I’m wondering now what other registers I’m on (!). My GP laughed at one point and said I wasn’t on the informal system run at my surgery that alerted the staff to the presence of a trouble maker. I have no idea what constitutes a trouble maker. Take your pick. Getting out of the system is one thing. Getting the fact recorded is another.
I also started thinking about medical files and power games. Yes, you can now (mostly) see your medical records if you jump through the hoops. But throughout my time in the psychiatric gulag I sat in front of numerous shrinks. They had my file in front of them. I never saw what they were looking at. It was the most disabling situation because I had no idea what had been written. I found it torturous, not knowing. I asked, once, to have a look and was shown the latest page which contained little more than current meds before the psychiatrist reclaimed it. Looking back, it was a petty power game: ‘I have the knowledge but you don’t.’
As you point out Sally there are always some who get it and others will be looking for loopholes and seem incapable of working in partnership. GPs are already in a stew about the Data Protection Law which allows people free access to their information. With claims that it is being mis- used by solicitors and insurers to gain copies for free but also that according to Richard Miller in ‘Management in Practice’ Aug 14th reviewing files takes doctors time away from caring for patients. On average according to R4 news today GPs work three and a half days a week.Unfortunately he is not as caring as he describes GPs to be – Richard made a comment about ‘bizarre complaints’ ,listing 10 rather poor ones which seem to have been invented by himself and colleagues and says he is not frustrated by the complaints as they make good anecdotes to tell his colleagues. The mag invites readers to choose their favourite complaint for a chance to win a prize. The rot sets in at a very low level.
In a piece by Valerie Flore she states that the new Data Protection Law (GDPR) ‘has closed a tap that used to drip a small but steady income ‘ (she regards £50 as small). The BMA has denied it is lobbying for GPs to be able to charge again but it would be a good idea to get hold of records quickly before the shenanigans begin to make it more obstructive. My own file was claimed to have been lost after I made my own comments in it including correcting errors .
Most of us would be told that psychotherapy records are totally confidential and that therapists are not allowed to breach that according to codes of practice/ethics which should be given to clients to read..They may share information with those necessary to any ‘treatment’ – with prior consent. I have done a lot of work on this issue but never heard of any organisation state that personal files are actually obliged to be kept for 20 years. Wonder what for? Therapists have said in the past at UCL that two files are kept , one for the personal use of therapists and one for the NHS. I don’t know what the policy is on destroying the personal file is- Clients are still being kept in the dark by therapists stating that access must be allowed ‘if the client requests it’. Many don’t think of it. some won’t have the confidence – loopholes ,loopholes. Another one – Brett Kahn a psychoanalyst in an interview declared how outraged many therapist were at the Tavistock clinic in London, and still are, that clients have the right to see files and that consent must be given for other than clinical use eg for inclusion in the many books written for private sale. He proposed that a few of them got together to find a loophole – which would be not to publish under their names so that clients would be unlikely to find their info had been used. Wish I knew why playing petty degrading power games seem to give some workers with privileged access to private lives such satisfaction. Are they flawed characters to start with? over worked ?hard work , doesn’t equate to abusive behaviour in other walks of life..
Are they flawed characters to start with?
That is a good question.
I would say that absolutely, yes, many of them are flawed characters to start with..
Most of them are entirely unsuited to the High Positions they are in.
They are in a unique position to change the course of our destinies with powerful psychotropic drugs…but because they come from a place where their education was flawed, their general perceptions about society were flawed, their relationships were flawed and their confidence building from being pushed up the unsteady ladder of success was flawed, we are the losers which is causing a Civil War…and most people would do well to reflect on the fact that ‘Position’, as it is, just reflects how bad it is, that they, just never, grew up…
Conflicts of Interest Questioned in Royal College of Psychiatry’s Participation in Government-Led Mental Health Medication Review
John Read @ReadReadj
Prof Sami Timimi (Fellow of College of Psychiatrists) and 30 others just wrote to the College requesting that Prof David Baldwin be replaced as their rep on govt Review of Dependence on Prescribed Meds., because of his enmeshment with 12 drug companies:
Annie – just had a look on your link thanks – there are 30 members on the review committee (and they all have links with others with views which cannot be known) yet I think only 3 have signed Sami Timimi’s letter. They know David Baldwin is massively compromised so should have registered their disapproval themselves ! Shows how many codes of good practice etc might as well be flushed down the toilet. Interesting to see ben goldacre has bagged himself a seat, These members should not only be declaring interests re drug companies but their connections with – eg. Simon Wessley ex chair college of psychs when they both belong to sense in science with it’s spinning machine. Simon and Clare Wessley, ex college of GPs, have a son in law who works with a talented team of spinners at the college of psychs. Some of the members of the committee have contacts which they are not obliged to make public but who will be no doubt influencing the committee. Came across an interesting web site – i don’t know when it was published or who by
‘Quack Bengoldacre, Patrick Holford and Gillian Mckeith
Appendix 12 Professor Simon Wessly’ Quote ‘Wessley is close to being able to spin on all matters relating to public health and science’. His support and connection with drug companies and government are documented – If the proceedings of the cttee are so heavily compromised by a web of those whose views are not in the public interest it doesn’t look encouraging.
Thanks to Tim Moss for this recent update in
Amending medical records
Patients should be able to report factual inaccuracies or question the content of the records but they do not have the right to alter their contents because they are upsetting or they disagree with them.
The right of rectification does not mean that doctors are required to remove their clinical opinions.
The ICO (information Commissioner’s Office) says: ‘It is often impossible to conclude with certainty…whether a patient is suffering from a particular condition. An initial diagnosis (or informed opinion) may prove to be incorrect after more extensive examination or further tests. Individuals may want the initial diagnosis to be deleted on the grounds that it was, or proved to be, inaccurate. However,
IF THE PATIENT’S RECORDS ACCURATELY REFLECT THE DOCTOR’S DIAGNOSIS AT THE TIME, THE RECORDS ARE NOT INACCURATE, BECAUSE THEY ACCURATELY REFLECT A PARTICULAR DOCTOR’S OPINION AT A PARTICULAR TIME. MOREOVER, THE RECORD OF THE DOCTOR’S INITIAL DIAGNOSIS MAY HELP THOSE TREATING THE PATIENT LATER.’ (my emphasis; nice argument! worthy of a lawyer..)
You cannot alter a record that is an accurate representation of the situation at the time the note was written, however you can make an additional note to record that the patient disagrees with the opinion.
If a factual correction is necessary, such as a misspelt name or incorrect date of birth, it must be obvious who made the amendment and when (computerised records usually create an audit trail).
If you refuse a request for rectification, you must explain why to the patient and tell them of their right to complain to the practice and/or the ICO.
The ICO also recommends keeping a note, indicating that the patient challenges the accuracy of the information in the records and their reasons for doing so.
Ultimately, a patient’s record should be complete and accurate to ensure they receive appropriate care.
Informing other organisations
If you have disclosed the personal data to others, such as secondary care, you should contact the recipients, if possible, to inform them of any amendments to the data.
End of quote.
Me: so, nothing has changed. It has (I think) been the case for a long while that patients have the right to have a factual inaccuracy changed; a wrong d-ob, or misspelt name or the fact that you had your left leg amputated, not the right. I would guess that merely means crossing through the mistake and substituting correct information, so the original remains, albeit clearly altered/corrected. There is some legal rationale for retaining original information – as with your original gender at birth on the state birth register, following gender re-assignment. I’m not commenting on the wrongs or rights of that – just that the original information has some legal status.
But there is still absolutely NO right for a patient to get a diagnosis changed in medical records– simply the right to have one’s disagreement recorded. I believe that has been the case for a long while. It is probably worthwhile, for those who can be bothered, as anyone looking at the record will be able to see the patient’s dissenting opinion – which might in fact be helpful, specially if the person reading it agrees with the patient (!).
But Sally, might there be a tiny “window of opportunity” here?
Your extract: – Paragraph 5).
“YOU CANNOT ALTER A RECORD THAT IS AN ACCURATE REPRESENTATION OF THE SITUATION AT THE TIME THE NOTE WAS WRITTEN” —
Recent references to the “GENERAL SLOPPINESS OF PSYCHIATRIC DIAGNOSIS” — “Mental illness is real but rare” —
Maybe 50 to 90% are misdiagnosed perhaps emphasise the potential for challenge.
So surely: “ALL” we have to do is prove that the “NOTE THAT WAS WRITTEN” was an INACCURATE MISREPRESENTATION OF THE SITUATION AT THE TIME?
For us, the “casual-diagnostician” even followed the misdiagnosis of “bipolar” with these words:
“I reserve the right to change that diagnosis at any time” he said, underlining his general diagnostic sloppiness.
(The correct diagnosis was serial ADRs, cold turkey withdrawals, and the additive, multiple neuro-toxicities of a ridiculous cascade of antipsychotics, SSRIs, SNRIs and an “atypical AD”).
Doctors are very powerfully motivated by the threat of professional censure, and by status-threatening litigation.
Medical negligence litigation is a powerful antidote to diagnostic sloppiness.
Bolam, and the power of the MH Acts, combined with the power and arrogance of the Guild, leaves life-destroying errors and complacency routinely uncensured.
Those who poison our loved ones, and poison their medical records are virtually untouchable in terms of medical negligence litigation.
Hence life-destroying injuries, and fatal psychotropic drug ADRs are never financially compensated – (As if they could be, but it would help wrecked and hopeless lives, or the bereaved).
Surely there must be some barristers who are committed, gifted, human rights-aware and courageous enough to convince a Judge that the M.H. case entry was indeed an INACCURATE MISREPRESENTATION, written and forever recorded by a diagnostic incompetent who could not differentiate intense AKATHISIA from psychotic depression, or a toxic delusion from a functional psychosis.
It seems inconceivable that anywhere else in Medical Practice such professional ineptitude, causing such catastrophic injury, would routinely and regularly occur with absolute immunity from medical negligence litigation.
Or, am I just being naive?
I hope this will not turn out to be yet more spin, but we wanted to alert anyone not yet aware, that on Wednesday 22nd August at 9 pm BBC 2 ‘Horizon’ is featuring ‘Stopping Male Suicide’ with Dr Xand van Tulleken, which we hope will be enlightening and worth watching. Previously the van Tulleken brothers have done some fairly good investigations, insofar as the BBC will let them. I would be amazed if they are allowed to mention either antidepressants, antipsychotics or the acne drug RoAccutane/isotretinoin as suicide preciptitators, but it would be fantastic if they were allowed to.
As to Susanne’s comments re the Sam Timimi letter seen on Mad in America, doesn’t it absolutely blow one’s mind that this covert cronyism and power exploitation re Dr Baldwin and others is waved through by Wessley et al. It states there that this information is going to be realeased to the media and social media for maximum public access. Wonderful, let’s just pray the media have the courage to grasp it and tell the world AT LAST. Whatever happened to medical ethics, by the way? Long dead it seems.
To all in the Comments; as I am a product of the US system, I have found this discussion interesting regarding the UK.
In medicine, the ‘white line’ holds fast; an attack (regardless of facts) on one, is an attack on all (behavior alert!).
This view was shared by police & priests, just to name a few occupations gifted with unearned cultural ‘deflector shields’, demonizing all critics, but especially victims……the not-fast-enough erosion of these dangerous fantasies has begun.
The psychiatric industry places bureaucratic hurdles around clients who don’t always have the good health, emotional wherewithall, support, not to mention juggling their day-to-day commitments, to press back effectively. YOUR DRUGGED.
Under NO ONE’S definition, is that an even playing field regarding the most important element in a life; SAFE health care.
This is NOT a call for attorney representation; lawsuits are not the effective move at this time. I believe ‘knowing the enemy’ is the best weapon. YOU gotta do the homework, but with some guidance & tools.
My suggestion is for a clearing house’ of sorts for clients legitimately victimized by the industry. It would be an excellent first step to arm clients with the tools to take the fight to the industry on a consistent, persistent basis, using their own bureacracy to chip away the stone. Effective marketing of the ‘client/consumer advocacy’ organization to media & the trade would add legitimacy; a sober, measured consumer rights organization….staffed with people who know the difficulties surrounding drug effects on emotions and linear thinking is essential; NOT ‘MH ‘ COUNSELING but ‘bureaucratic workshop’ tutorials…offered by experts on the pertinent laws, statutes, and regional rules dictating to & enforced upon clients of these diagnoses & treatments. A choice of specifically targeted forms (after a qualifying, filtering process) for subjects as medical records amendments & legally prepared objections, addressing informed collaboration regarding prescriptions, and official, appropriate forms that step-by-legal point-step, carefully, appropriately refute a diagnosis. In psychiatry, ‘legitimacy’ will be (relatively) easy to establish…starting with the industries own ‘supportive, non-stigmatizing’ ethos surrounding clients. We will whole-heartedly agree with them. I have found using the industries OWN WORDS to make MY argument was the ‘hot knife thru butter’. Like all dictators, they reserve the ‘right’ to have it both ways, supported by cultural assumptions. In this age of media, that will be the easiest platform to establish for us. The medical industry as a whole lacks the public confidence.
I knew the mistakes & damage they were perpetrating on me; there was no independent, INFORMED, untainted ‘advocate’ group I contacted…for 3 years. All approached me with my diagnosis coloring their response that invariably led to a version of ‘Calm down, you’re exaggerating’. My life was in danger; the objective ER medical records said so…alarm was a rational response. Editing it, tailoring it to each ostensible support group was an Olympic gymnastic exercise. There was no real-world knowledge of “on-the-ground” behaviors by the clinics. Forgiveness & a blind-eye was cast on the ‘honest mistakes’ I had encountered…easy if you weren’t harmed. And I had no x-rays or open wounds to show.
It’s similar to applying for a job. You must tailor the presentation of your facts to the listener, convincing them that all will benefit from your acceptance. Emotion is not your friend; knowledge of the bureaucratic system is.
Attacking isn’t necessarily effective for this purpose; ‘collaborating’ is…meeting them where they are. You want paperwork? Let me back my truck up.
I feel there is an effective administrative and marketing solution to the challenges discussed here. A bureaucraticly focused, measured, relentless, consistent, high-profile push-back is something that hasn’t been attempted, targeting the paperwork and deadlines that they ‘require’ just to be heard. A recognized Board of Directors is essential; the difficulty there is to streamline and agree upon actions & goals, with egos checked at the door. Keeping the mission simple, direct, and tool focused, NOT idealogical or scoldy, is the hard part…bureacratic interpretation, effective responses, & support for clients requesting change.
As the UK is a somewhat smaller system, not necessarily broken up by 50 individual systems, like the US, it might be doable sooner…you guys know better than I ever could.
Blogs share experience. My last essay offers suggestions…but an organized effort, with clear objectives and measurable goals is needed to assist the exploited individuals…an INNOCENCE PROJECT (the US’s answer to “lifelong” prison sentences & death penalty cases), for psychiatric clients. It won’t be ‘everything for everybody’. It can’t be legal representation for everyone. It has to be premised on client’s (or surrogates) doing alot of the work for their own circumstances…BUT WITH A ROAD MAP of sorts, explaining the rules & action options; a “How to…”. Tempered, realistic expectations can move things forward; it won’t happen right away, for some not at all…but ‘if u don’t buy a ticket, you can’t win’.
The last time I looked, NO ONE was winning except me & that other guy. Outrageous & unacceptable.
When I was fighting, I was desperate for TOOLS, not commiseration.
Back in the day, the phrase “Think global, act local” was popular. Addressing psychiatry’s many, many sins is overwhelming, diluting the response.
Individual cases, unified by consistency of approach (they WILL notice) might be a way to breach the wall ever so slightly, followed by repeated, persistent widening of the crack.
As more & more realize there is real hope, it will be less like ‘herding cats’ and more like a main-stream, well-regarded movement. What psych clients strive for is an equal voice at the table; something your young royals have already begun to speak about. It’s a start. Capitilize on it by working THEIR system to YOUR advantage.
We are all born with imperfections.
When a med causes harm and we are trying to survive the pain and suffering it inflicts, we do not need labels to make our life a living hell.
The hell that it already inflicts, is more than enough, that one has to endure.
Caveat: Please label the med: Unfit and dangerous for human consumption.
In times, when we had no choice, or felt very vulnerable and were silently suffering, we did not need to have a label tattooed to our forehead that permanently scars.
We just needed;
Understanding, support, no judgement and certainly no condemnation. CB