Changing a Medical Record 2
Editorial Note: This is the second in Krista Hartmann’s 4 parter on changing her medical records. See part 1, Unicorn.
“What the mind doesn’t understand, it worships or fears”. Alice Walker
When I encountered the psychiatric industry in 2004, I was a 53- year-old, sun-surf-beach chasing artist with a solid education and middle-class origins. I was a single, unconventional, iconoclastic female. I moved freely through the world with the notion that “Life is a daring adventure or nothing at all” Helen Keller.
If I had been male, I would have been characterized as a “rugged individualist, walking to his own drumbeat, following his dreams, choosing the path less taken, adventurous, dynamic, the most interesting man in the world”. The sexist dichotomy in American culture celebrates uniqueness and daring in men and finds it unattractive (gasp) and threatening in women. In psychiatry I learned that if your female, “follow your dreams, dream big” wasn’t bold, it was ‘grandiose thoughts’.
I had a restless mind and was eager for new learning experiences….and on to the next. I had been a National Billiard Champion in college, a club and restaurant manager, a croupier in the cruise industry bouncing from beach to fabulous beach in the Caribbean, a line cook ala’ “Top Chef”, a photographer, a visual merchandiser for national corporations, and interior designer. I had a showroom to-the-trade in Atlanta and was a ‘makeover’, start-up consultant, and buyer for retail businesses.
I was comfortable with myself and life was getting better all the time. At 43, in 1994, I designed and built a house at the beach, living the good life with an abundance of pets and my spectacular garden. My creativity was unstoppable and stronger with each year. It was washing over me, paying the bills (bonus!) and it was bliss.
I developed into a Caribbean folk-art painter with an agent, a van, and exhibiting in the most prestigious shows in the southeast, carried by galleries in the U.S. and Caribbean. This was what I was supposed to be doing, with people who were just like me; creative and different.
After a few hectic but thrilling years, I had to shut it down in 2004; a small business failure like thousands of others. It was a difficult personal disappointment, but I sucked it up and got another ‘real’ job.
I was teetering financially but had not fallen behind…yet. I wasn’t sleeping well and my mother chose that time to tell me what a disappointment I was to her. As my mother’s affection and approval vacillated almost daily, this wasn’t news, but her timing was poor. And my 16-year-old hound dog Stella, had died. I was shattered.
It was 2004, and armed with my new insurance, a psychiatrist seemed like the answer to get some assistance sleeping and a little emotional tune-up. Twenty minutes into the appointment, I was diagnosed as bipolar 1 and dosed with Seroquel, followed by my first Neuroleptic Malignant Syndrome reaction. Wait, what….?
After regaining movement 8 hours later and terrified, I was told it was “no big deal, just a little side effect, we’ll adjust the dosage, everybody experiences this, you’ll be fine…nothing to worry about”.
“This response was a SYMPTOM of your acute illness and proves that you’re in extremely serious danger of self-harm, you’re very sick, we caught you just in time; if you do everything we say, together we can save your life…as long as you never leave us”.
Suicide was anathema to me; now these experts couldn’t stop talking about it. What was I missing?
I am now aware of this intentional, predatory, grooming behavior. It was a stunning and impressively choreographed synchronicity of agenda, proselytizing and recruitment; the definition of a cult. I was emotionally vulnerable, drugged and terrorized; a soft target for what was to follow.
My diagnosing doctor had checked all the boxes in the People magazine bipolar quiz that were ubiquitous in 2004 (and still are). Although I don’t have evidence of her complicity at that time, when the federal ACA “Sunshine Law” mandated reporting in 2013, she was banking $65,000 a year from pharma (“Dollars for Docs”, ProPublica.org), primarily Astra Zeneca, makers of Seroquel, her medical response to my presentation of financial stress and severe insomnia; chemo for a cold. No temazepam and CBT for me; no start low, go slow and the occasional diazepam.
The cascade of side effects ‘symptoms’ was crippling. They efficiently reshuffled my emotions, my perspective, and self-confidence. I was terrified and ashamed of my ‘failures’. My knee was being permanently bent.
My inability to function led to the loss of my beloved 11-year-old home, selling all my possessions, and bankruptcy…’couch surfing’ at 55 years old. My diagnosing doctor and ‘therapist’ coolly looked on, congratulating me on my med compliancy. As I left my town of 25 years to crash at a friend’s 300 miles away, they wished me well, reminding me to stay on my meds. It all happened so fast, I couldn’t catch my breath. Why was I the only one alarmed?
I waited for that promised flood of acuity, like a ‘green flash’ sunrise, where all would be revealed in sharp relief and chemically delivered contentment would grace me…if I was compliant; otherwise I would surely die…by my own hand.
It was like waiting for Santa at an abusive relative’s house.
How did this happen to me? I couldn’t face the answer; I had agreed to it. It was my fault. I deserved the drugged ‘netherworld’ existence I was stumbling through. It was all gone and all I wanted was it all back.
“The problem with psychiatric diagnoses is not that they are meaningless, but that they may be, and often are, serving as semantic blackjacks; cracking the subject’s dignity and respectability destroys him just as effectively as cracking his skull”. Thomas Szasz (1961)
My isolation was complete; I used to be an expressive, creative pirate, swashbuckling thru life. She was dead; her epithet was rapid speech, grandiose thoughts, irresponsible with money; manic; changed jobs frequently, business failures, disruptive relationships, DTS; depressive.
The ensuing 9 years of perpetual shock was an envelope of white noise, with the regular plunges off a cliff when a new drug was given or and old one went sour. I was universally viewed as a ‘drama-queen’ as my responses to the drugs were always painfully adverse, as if I would choose that. I was baffled as my side effects were not just interior, they were physically manifested. I didn’t trust the world or myself anymore. I kept my head down, in and out of ER’s with the drug damages (have an Ativan!), never behavioral issues, watching my health deteriorate and stared at my shuffling feet. I was pronounced ‘disabled’ and SMI by a marriage counselor following a week in hospital, caused by 13 med changes in 9 months, Geodon with 4 other drugs on board delivering the final blow (that time); bradycardia, severe akathisia, malnutrition (anorexia), and…anxiety. No sh*t.
I attended ‘groups’ faithfully, desperately seeking, but never finding someone like me. There were side effects galore and people very troubled by their quality of care, but no one was being physically crushed as regularly as I seemed to be. This is in NO WAY diminishing other’s suffering; there was an abundance of it. It’s not a contest.
I had lost my private insurance and was swallowed by the Medicaid/Medicare model, awash with GED-educated case managers one step away from their Taco Bell ‘experience’ and a heavy rotation of unqualified PA’s and MA’s padding their resume’s with ‘social service’ work before quickly moving on. The damage in their wake was incidental; I rarely saw a prescriber more than once or twice. As this was health care for my brain, it was criminal.
By 2013, I hadn’t seen a doctor in 7 years with the state; not for an assessment or for treatment. Considering that the first falling domino in this sh*t-show started with a private psychiatrist, I was ambivalent.
DESPITE THE DRUGS, from 2006-2013 I had slowly rebuilt a life by volunteering and subsequently offered a position on the management team of a prosperous non-profit that would last for 7 years; running systems, serving as the first contact with the public, and developing successful programs. It gave me a sense of purpose in a meaningless life. I paid off a modest condo and new, more modest car with a small inheritance, all approved by Medicaid/Medicare as I was still in a ‘poverty’ category, with ‘permission’ to work. I lived alone, had pets, was debt-free and had a few friends. I told them about the diagnosis and drugs so they would not be alarmed at my physical state. Outwardly, I was a ‘model citizen’, hitting high marks on the scale that all people are judged by. I continued to plod along, afraid of somehow causing it to fall apart again.
I used to embrace adventure, now I cringed at the smallest irregularity. I would not paint again or engage in sex for 12 years. My weight was over 200 lbs.; at diagnosis had been 138. I didn’t know the woman in the mirror, but I hated her.
I remained SMI. The clinic ignored the facts of my life. In my western state, the following defined an SMI designation:
- “Inability to live in an independent or family setting without supervision-neglect or disruption of ability to attend to basic needs…housing, food, and clothing must be provided by others…unable to attend to basic needs of hygiene, grooming, nutrition, medical and dental”.
- “DTS/DTO, seriously disruptive to community…regularly engages in assaultive behavior…has been arrested, incarcerated, hospitalized…because of dangerous behavior…severe disruption of daily life due to frequent thoughts of death, suicide, or self-harm…”
- “Frequently in trouble at work…unable to work…or meet appropriate responsibilities”.
- “Co-morbidities…like mental retardation, substance dependence…Chronic factors such as social isolation…poverty”
Who were they talking about?
The state’s behavioral management contractor was getting additional state and federal funding for my SMI designation. I was a steady revenue stream, a number in a column on a spread sheet, a job creator.
In 2015, on my way out of the industry, I enlisted a receptive supervisor to help unearth my 2006 SMI certification. It took weeks and when she called back, she was awkward, coughing into the phone, pausing; I waited…and then she said “I‘ve looked over your paperwork and…..pause….I just want you to know….throat clear.…We don’t do things like this anymore”.
Sweet Baby Jesus.
I had been bought and sold, passed around the industry from coast to coast. Regardless of how it felt, what I had lost, and the damage I suffered; this wasn’t personal, it was business.
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I am increasingly moved and deeply saddened by your account of the injuries and suffering caused to you by this cascade of profoundly toxic drugs.
It is typical of the epidemic of psychiatry’s mis-labelling, that life threatening ADRs to psychotropic drugs are a lucrative source of “emergent psychiatric illness”.
Each new misdiagnosis, an expanding income stream for the prescriber.
“Each new psychiatrist only sees the damage caused by the previous psychiatrist”.
The unique, precious, pre-drug-wrecked human being is beyond their ability to conceptualise.
Where did they have their empathy gene-deletion?
Is it part of their training?
Does greed pre-select those medical students whose qualified medical lives then lead to such brutal destruction of those about whom they pretend to care?
PSYCHIATRIST: – ABSCENCE OF EMPATHY? (A proposed definition of evil).
Sunday Times News Review. 27th March 2016.
“The Making of a Monster”. (Patrick Bishop)
Radovan Karadzic : –
“He was a bright student and went on to study medicine – specialising in psychiatry. His professional life, working in the city’s (Sarajevo) main hospital brought him status and satisfaction”.
He was finally arrested in Belgrade in 2008 where he was living under the alias of
Dragon Dabic and working as a New-Age Healer, diagnosing ailments using a stone suspended from a stick”.
———————————–
I have witnessed and lived through a similar carousel of totally unneeded and unnecessary – coerced and enforced – poisonous psychiatric drugs, and have seen their resultant multi-systems, critical injuries inflicted on our loved one.
I have and spent seven years trying to help salvage something of “a life” for a devastated, once beautiful and vivacious, enchanting and gifted young human being.
Surely what you describe is indeed criminal, or is it criminal negligence?
Whatever crimes they commit, they are answerable to no one.
I perceive a psychiatrist’s syndrome of “Reverse-Anosognosia” where the psychiatrist’s sadism insists and records that an S.M.I exists when clearly it does not.
Reverse-Anosognosia as the prescriber is so diagnostically infallible that he or she alone can see mental illness where none exists.
It is the perfect alibi for their grievous bodily harms.
Their crimes against humanity mediated by devastating drug toxicity.
Drugs which do not seem too different from diluted, “Junior-Novichok” –
(Other than the spy-poison’s speed and intensity of devastating neurotoxicity perhaps)?
Tim, Thank you for your post.
I lost a decade and learned about the venal side of life & medicine, but have somehow emerged as a 2.0 version of myself. It will serve to protect me as I age & encounter more doctors…but I choose to be happy & useful now (I ‘re-learned’ happy) making so many plans. I refuse to suffer anymore but it has left a mark; a very large scar that aches now & then.
I’m the lucky one…or two.
Hope (& outrage-a powerful tool) combined with laser focus can chip away the stone; Part 3 & 4 contain much more strategy & tactics that may help others.
It would be a wonderful by-product of this experience; exposing the unchallenged exploitation of the vulnerable. It’s indefensible.
You’re outrage and sadness resonates so much Tim. Human Rights so easily go down the drain – years ago i saw a film where Karadzic was being filmed looking noble and striding atop of a beautiful mountain overlooking the valley he intending bombing ‘to send them all to hell’ while his poetry was being spouted. He defiles any notion of humanity. But sorry to be harsh – so do all those who cause such pain and loss of life in UK and all so called civilised societies with their drugging of vulnerable people.
This includes those who are supposed to have an extra dose of empathy – psychiatrists-therapists who often won’t see anybody seriously unwell in the first place but also won’t ‘help’ them until the person has taken a course of drugs. By that time of course they are no longer ‘themselves’ and will have yet another string of psychological labels added to the necklace of ‘diagnoses’ until one day it strangles them ,either by ending it all as unbearable or having a beautiful life destroyed. Thanks Tim.
Krista,
Never beseech, whine, cry, or whimper in the presence of such a doctor. Do not lose your temper. Many doctors react poorly to emotional displays. Always speak calmly, clearly, firmly, and deliberately. Repeat yourself if necessary, as if training a large dog.
Altostrata says: March 26, 2014 at 1:26 pm
Annie,
Stay tuned.
I hope you will be entertained how I brought that dog ‘to heel’.
It begins in 3 and gets very ‘nuts & bolts’ in 4.
I also hope by accomplishing this–while drugged–it will inspire others to start the revolution (or at least offer hope) regarding the effective push-back to ‘at-will’ cavalier condemnation, an unchallenged, life-long diagnoses.
Currently, only passing reference is directed at ‘false’ or ‘over’ diagnoses; the ‘other’ shoe never drops in these convos….HOW can a client challenge these subjective labels, particularly when the ‘rule book’ (DSM) is subject to the trends & politics of the day; by what means, who will judge clients further, are the judges informed and uncrompomised, a nod to acknowledged past influences. Objective (not ‘in-house’), periodic reviews are essential if ‘recovery’ is an actual goal…as the industry shouts from their mission statements….
While being assaulted by brain toxins & physical break-down, clients must gather resolve to establish crediblity to their judges….a prisoner with a life-sentence telling the prosecution, judge, & warden “but I’m not guilty!”…good luck with that. It’s already over unless u have unlimited resources.
At the end of my story, on New Years Eve 2015, my exit doctor texted me “I hope I delivered on a promise. Happy New Year”.
I responded “It’s as if my character had been found guilty (without a trial) and the ‘Innocence Project’ (you) came along and 10 years later exonerated me….yeah, u delivered”. It seemed like a Hollywood ending.
Just 1 problem; the exit doctor breached ethics in an unmistakably major way, just before my exit. I had the damning text as a ‘hole card’. It was scary & weird… an unecessary & terrifying sour note, right out the door. In any other context, I would have exposed the situation & been validated…legally. My priority was unwavering; get out with the paperwork, get distance between us, & start healing.
Part 4 of the essay brings alot of specific vocabulary & behavioral tools to consider if parity, safety, or exit is a goal.
Annie, you will clearly recognize them. I hope they make you smile…let me know.
Thx, K
Reading this with absolute fascination. A deal of your story resonates with my experience in the UK – not that surprising, as what happens over there – happens here pretty quickly. The UK bases its healthcare on financial incentives and payment by results in primary care – the consequence of a disastrous re-working of how GPs are paid by the government back in 2003 which linked income to outcomes (not, sadly, good patient outcomes – simply how many people with raised BP, blood sugars etc could be tracked down and medicated). It’s a fiendishly complicated system. This is relevant, as at some point in the mid 00s some areas thought checking the physical health of people who’d been in the psychiatric system for a while (like me) was a good idea. Once patients disappear into the next tier of healthcare – under a consultant, in any speciality – the role of the GP disappears, apart from a scanty monthly update. So those of us taking a poky cocktail of psychiatric drugs never, ever had their physical health checked – about the last thing any psychiatrist was interested in. We just fell through a great big gap.
So – checking the BP/bloods/lipid levels of psychiatric patients was, actually, in theory not a bad idea, although probably wouldn’t have resulted in anyone doing a medication review, just more meds like statins. It was an appealing idea for GPs as the check (a quick blood test) attracted a nice little financial bonus by way of an incentive. In order to track down potential earners in this category, many GP practices developed a Serious Mental Illness Register and plonked everyone like me on it. Of course none of us knew we’d been ‘registered’ – what a thought! And, in order to ensure the surgery received its payment we were allocated a code. Dumping diagnostic codes on patients in order to get payment is how the system works here as well.
Back then, you could be registered for any old madness – now it appears to be limited to people given bi-polar and schizophrenia labels.
I was a complete, abject mess when I was put on the SMI Register. Like you, I crawled my way out and have had nothing to do with psychiatric ‘services’ for six years plus – I sacked the lot of them and have never looked back. It helps that the service is a soggy shattered mess and can’t even cope with people in desperate major distress so I’m not in great danger of finding myself back there again.
But – I discovered the existence of the SMI register and the fact that I was on it a couple of years after parting company with them. It was on a ‘summary record’ printout sent to – of all people – the local gym. I’d been referred for an arthritis exercise class and the exercise bunny giving me my induction half hour showed me the print-out: cancer, arthritis, high blood sugars and – SMI Register 2005. She was taking my BP at the time and the machine blew a gasket. I did some research. Then asked my GP to be taken off. He ummed and ahh-ed and said that basically, it wasn’t possible. It wasn’t possible because they had no way of removing or changing the code for SMI on my medical records. Which opens the great big can of worms that trying to get a record changed consists of here – as David suggests in his introduction to your story. Once there, it cannot be removed. It can be amended, if a medic considers a clinical error has been made. But the most a patient who disagrees with a diagnosis can expect is to have their dissent noted.
I decided I couldn’t be arsed, and to hell with the lot of them. But I’m in my sixties and can risk that, as won’t be applying for jobs or any other situations where my medical records could destroy my life. The situation for younger people is so bad. Dying to read how you tackled the matter – roll on part 3!
Sally,
As I was so sick ALL the time (the popular “med resistant-scientific’ explanation) & was causing alarm ($$$) by checking MYSELF into the hospital on the GEODON with heart problems & nerve damage, they shunted me to the “SMI BENEFITS” program, happily telling me ‘I qualified for better care!’ They simply wanted my ‘mess’ off their plates, but remain in the system….SMI promising the far more comprehensive ‘suppression of characteristics & sedation’…more and more drugs. This after 13 med changes in 9 months…& 6 additional drugs in the hospital.
I staggered out having lost my job while hospitilized for a week & declared ‘disabled’, now on the dole.
SMI is supposed to be re-evaluated on a schedule here….the criteria was ingeniously, intentionally designed to NEVER allow that to occur. “You can check in, but you can never leave”.
I would never have any relationship with an ‘approved’ medical worker for a required, continuous 6-month period (in 7 years) to ‘officially’ qualify for re-assessment.
MH mgmt companies in my state had the 2nd largest contract in the US (& they liked it!) SMI ensured additional federal $. They are also the ‘official’ source for the outrageously inflated & frightening SMI diagnoses predictions (double!! the scary, crazy people) for the state lawmakers to justify the $2 billion contracts (years ago). Lawmakers are uncomfortable with MH, saying yes to anyone who uses the word ‘recovery’ enough to placate the voters.
More about ‘recovery’ in Part 4.
You can’t get the false diagnosis removed or expunged: I had it REPLACED in my current record, their own arrogance proclaiming it “lifelong” bit them in the a**, as it is ‘CORRECTED’ now…a private spanking that I’m making public.
“Lifelong” wants evidence…make your ‘evidence-based’ case against MY facts clearly demonstrated (not theorized) by my behavior…my life.
One of the most extraordinary, troubling, brainwashed responses to my exit paperwork by another doctor was (u can’t make this sh*t up) “How can that be!?” Duh.
Well, chief, YOU have malpractice insurance for a reason, don’t u? Even the God’s make mistakes; clearly a troubling concept to doctors. ISN’T ANYTHING SACRED?
My quality of life should have been.
The paperwork is essential should u have any legal misstep and immediately be condemned by the eternally damning utterance “SHE”S OFF HER MEDS”.
There’s no coming back from that one.
Hi Sally The Severe Mental Illness Register rings a bell.
EMAIL TO MY GP SURGERY LONDON W2 5LT
DATE: AUG 29 2013
SUBJECT: SMI RESOLUTION LETTER
Time: 7:31
Ref 97216 SW Steven Waweru
For the Attention of: the Acting Manager and Doctors at ….
Re. SMI Resolution
I have been advised to write a Letter with a view towards resolving this SMI Problem
A Severely Mentally Ill Person costs the UK Taxpayer about £36,000 per year or £1 million for the period of time I have been in the UK.
Doctors at Newton Medical were aware that I was not Severely Mentally Ill when they put my name on the Severe Mental Illness Register: My main job is in construction. This was done behind my back for Money.
I require payment for the misuse of my name and the wasting of my time.
I need Acknowledgment of the Fact that my name should not have been put on this Register.
I’ll need access to my personal details at the Medical Center from time to time to ensure theres no further misuse of them.
I also require what I am entitled to anyway.
The misuse of my personal details has opened up problems that need to be sorted out.
Record Amendment
The Irish 1986 Record Summary is an example of genuine Malpractice:
The 1986 Record Summary was sent over as a result of a Handwritten Letter (I have a cpy) Requesting Warning against Adverse Drug Reaction (depot); this Warning was intentionally omitted.
Nov 1980 On Admission at Galway I presented in a mentally well and ordered manner according to The Discharge Summary 1980/1 and Admitting Doctor at the Galway Unit; not psychotic and aggressive (as per Altered record)
1980 – 1984 Every hospitalization is a medication event
Dec 1983 Hospitalization is missing. This hospitalization would have highlighted medication problems.
April 1984 Hospitalization: Adverse reaction to first time Depixol injection is kept off the record. That it was a short stay is not mentioned.
Post April 1984 Recovery and return to productive life was as a result of halting strong medication and Moving to the Talking Treatment (NICE now recommends this)
This 1986 Record is Inaccurate, Incomplete, Misleading, Altered throughout. I have a Statutory Right to Amend it.
To clear up Records
There is too much ‘mental’ detail on my Record. I would like a clearing.
The ‘Day Hospital’ was a counselling interaction and details are not suitable on a system.
Medication/ Recovery
I require up to date credible representation on my medical records.
Yours Sincerely
Me
Come!
Sit!
Stay!
The three most useful commands for the ‘pooch’ as he heads out the exit door – marked ..
Katinka, in her book, had a final conversation with the doctor
p303
‘But you agree it could have been in my case, that the drugs could have caused the psychosis?’ I persist.
‘We’ve already been through this, what did I say?’ he says.
‘You said yes?’ I tell him.
‘Exactly, so why are we repeating it? You’re like a dog with a bone!’
He’s right, I am; he’s admitted to me that my illness may have been caused by the drugs, but it’s a kind of Pyrrhic victory and it hasn’t really got me anywhere.
Where the hell am I going with this, I wonder. I need to wrap this up.
‘You acknowledge you may have got it wrong,’ I say.
‘Yes, I do,’ he replies.
‘That’s great,’ I say because Lily and Oscar would love to hear that. They were nine and ten at the time, you see, when they lost me for a year. It was a bit of a shame for them, you see. Could you write them a letter, telling them that? You don’t have to say you did get it wrong, just that you might have got it wrong,.
He hesitates – I notice his black coffee is untouched and now has a crust of film on it.
‘I could probably do that’ he murmurs.
There is no eye contact.
‘Do you promise?’ I say.
Yes, I should be able to,’ he replies, looking at his watch.
But there is no warmth in his eyes. There has been no sign of his former bedside manner, his twinkling eyes or anything of what I remember about him when he thought he was making me better. I have no idea whether he believes he got it wrong or whether he thinks I am barking mad.
He has been looking at his Rolex watch rather a lot. And actually, I’m keen to wrap this up now.
…
Pick up your copy of The Pill That Steals Lives …
‘
Generally speaking, people don’t want to hear about our experiences, if it has not happened to them.
General Mentality:
‘As long as everything is going supposedly ‘smooth sailing’, we are fine and these meds really help us and we believe and have trust in our medical professionals’.
I am happy for you all however, until one has nasty side effects or an unpleasant adverse reaction or death results, ‘we’ just have to accept the facts that some people are not going to listen. We are just perceived as a nuisance or threat, to their ‘I am ok’ mentality.
We can talk until the cows come home however, if we live in a ‘bubble’ mentality and believe that it will ‘never happen to us mentality’, unfortunately, some are just too rigid in their way of thinking and will write many of us, off.
What ever happened to free thinking?
Are we are threat to the fears that some people harbour and if so, just don’t listen to us if we are perceived as a threat to your ‘unblemished’ world.
If we have an opinion or we have a mind that thinks ‘outside of the box’, we will shoot you down in flames because you don’t share our opinions,beliefs or our way of thinking.
Same applies to professionals who label us:
‘If you don’t agree with our diagnostic frame of reference in how we came up with such a label, you can ‘take it or leave it!’
This is the problem with medicine:
It just boxes you in, so that you conform and go along with all the hype.
I must admit, some information is genuine and some is insincere, and if we don’t follow our ‘gut instincts’ when it comes to our health, we could end up in shallow waters.
If we did not end up going to the professional in the first place, we would not find ourselves in such a dilemma.
I thought I’d have a look to see whether since I last looked it HAS become possible to be removed from the SMI register. It’s noteworthy that not only does the question seem to have drifted away as being of any interest whatsoever (to medics) but the current rhetoric around the register is ‘improving the health of people with mental illness’ and much spouting of recent empty statements about ‘parity’ between mental and physical illness. Plus ca change. I tried every which way of variations on ‘removing a patient from the SMI’ but the only things I could find relate to early attempts to wrestle with codes, dating from the time immediately following the introduction of the SMI. Here are a couple: I noted that both are by ‘consultancy services’: I also noted that whilst to my knowledge no one was ever informed about being put on the register in the first place, a year later any obligation to do so had gone anyway. The language is interesting too – ‘business rules’ dictate who may be included. ‘Targets’ is another. The mention of ‘points’ relates to the system whereby GP practices earn points by tracking down patients and points mean money. I include the quotes to show the complicated nature of payment incentives, ‘read’ codes and suchlike – but the very last bit is hilariously awful. It demonstrates how impossible it is to get removed – on bureaucratic grounds alone.
http://www.managementinpractice.com/featured-articles/code-confusion-managing-mental-health-register (2006)
“‘Jill’s company provides consultancy services to PCOs, practices and many other NHS-related organisations’
“Many practices have discovered that their mental health (MH) register has increased way beyond their expectations.
You no longer have to acquire permission from patients to be included on this register.
Appropriate diagnosis codes will put patients on this register.
Patients on the MH or NSFMH (National Service Framework for Mental Health) register are included.
Patients who have had a script for lithium issued in the six months before the reference date (1 April 2006) are included (NB: these patients are excluded from MH9 and MH6, unless they have another qualifying code).
“The business rule sets for the MH register has excluded some codes that begin with E1. These are:
E118: Seasonal Affective Disorder.
E11z1: rebound mood swings.
E11z2: masked depression.
E135: agitated depression.
E140%: autism.
“However, the problem does not only lie with codes beginning with E1; many Eu codes are also included: Eu2% and Eu3% in particular.
“Adding “9H7: removed from severe mental illness register” will not remove patients from the register if they have a diagnosis code. This code only applies to patients included on the register with the codes 9H6 on the NSFMH register and 9H8 on the severe mental illness register.
“The code 212S (“depression resolved”) will not remove patients from the MH register. It is not an exception code included in the business rule sets for MH. It will, however, remove a patient from the depression indicators.
http://physicalsmi.webeden.co.uk/download/i/mark_dl/u/4013595839/4633995558/Sorting%20out%20MH%20register.doc (2006)
“Removing patients from the MH8 Register
Once an approved code is added to the patient’s record, THERE IS NO EASY WAY TO REMOVE THE PATIENT FROM THE MH REGISTER.
“The rationale is that any patient with a severe illness, even if controlled or in remission, has a significant chance of relapse and hence should have an annual review, rather like patients with certain cancers should.
“There is a Read code that was introduced to remove patients from the MH register in the previous QOF Removed from the SMI Register9H7
“However this does NOT remove the patient from the MH8 register if the reason they are on the register is the presence of an approved SMI/psychosis Read code. It only removes the patient if the only reason they are on the register is due solely to the presence of a 9H6 or 9H8 Read code, which is a very unlikely situation as most patients will also have a SMI/psychosis code.
“A suggested solution to the MH register anomalies:
“Produce a list of all those patients with historic codes for depression that will now put them into the MH register. To do this run a report, searching for patients with the following codes added ever:
E1… & all subordinate codes
Except the following 5: E118 SAD, E11z1 Rebound mood swings, E11z2 Masked depression, E140 to E140z Autism, E135. Agitated depression,
2. Eu204 [X] Post-Schizophrenic depression.
3. Eu323 [X] Severe depression with Psychosis.
“Then exclude those patients with a genuine reason to be in the list, perhaps by cross checking that list against last year’s list from your mental health register.
You will then be left with a list of patients, some of whom will have NO active psychotic problem & who should NOT be in the MH register, & some who actually DO have an active psychotic problem, but were “missed” from your previous register of patients with a Mental illness, & therefore were not within the MH register last year due to the practice having previously added 9H6 or 8 to their record.
“A clinician is probably the only one who can differentiate these two groups, (though evidence of active antipsychotic medication being prescribed might be used as a screener).
“Having derived a list of patients that should not apparently be in the list, you need to identify the code that’s putting them in there (remembering that they may have more than one code triggering insertion).
“You then have 4 choices:
• Change the triggering code(s) to another one with a similar meaning in terms of depression but not within the Psychotic depression chapter.
• Add the exception Read code 9h91 “Mental Health: patient unsuitable” to relevant patients’ records to remove them from the MH register. (You will need to do this annually as this is an expiring Exception Read code, and so lasts for one year only.
• Leave their record alone, & do a mental health care plan on lots of patients who have no need for one.
• Don’t do anything much, leave a potentially incorrect entry & waive some or all of the points available for the indicators involved.”
[me: sod the patient – what really matters is that you’ll lose some income because ‘points mean prizes’].
Me: The Rehabilitation of Offenders Act gives prisoners and those convicted of a crime the right to have the record forgotten after ten years when applying for jobs etc. Even people on the Sexual Offenders Register have a legal right to appeal against being listed – won by taking legal action on the grounds of fundamental Human Rights. Maybe one of us needs to take that route? Expensive, an incredibly long process through the courts – probably around 10 years minimum. But it looks to me as though there is no other way to win the right to get off a register that many of us shouldn’t have been on in the first place, not to mention having a lifelong label hung round our necks until the day we die.
On a pragmatic level: I reckoned the least stressful option for me is just to stay clear of doctors for as long as possible and the SMI entry will slowly sink to the bottom of my record. When I have to go, I ignore the matter of my past history and stare people in the eye with a malevolent gaze. Alternatively – go as often as you can with as many minor complaints as possible (verrucas, UTIs, ingrowing toenails, colds, sore throats, a strange itch, a worrisome spot) so your record is swamped and the SMI business gets sort of drowned. You’ll have to be careful you don’t go so often you get labelled as a hypochondriac and treated accordingly for a ‘health anxiety disorder’ plus relevant code. Strategic hypochondria is required.
Anyway – I’d love to know what the response to your challenge to the GP was Fiachra although I’m guessing it wasn’t positive. And shall carry on looking forward to reading how you managed the situation Kristen.
These are very helpful leads – points at which the system might be vulnerable
DH
Hi Sally,
In terms of Severe Mental Illness I made Recovery in 1984 as a result of stopping treatment suitable for Severe Mental Illness and moving to Psychotherapy. In my opinion this would be very different from “remission” from a “medical illness”.
Below is an account of my Psychiatric Experience and Recovery.
https://www.madinamerica.com/2018/05/antidepressant-withdrawal-can-trap-people/#comment-131809
https://www.madinamerica.com/2018/05/antidepressant-withdrawal-can-trap-people/#comment-131871
As regards the SMI Register I’ll let you know what followed my August 2013 communication. But if you look at the comments made in Part 1 – Its not only me that’s been upset.
Medically Speaking inventing a Severe Mental Illness Register that allows for MH information to be distibuted – without any clearcut checks and balances, was one of the silliest things the NHS has ever done. They have left themselves wide open to all types of Discrimination and Human Rights Claims.
In my own case having registered with my GP Surgery at London W2 5LT, in 1996/97 the Surgery never followed anything up, until in 2002/03, when they discovered they could make money.
They were holding the wrong MH “Diagnosis” on me on their system, so they altered my MH Records when they accessed them in 2002 – to cover their tracks. Now they’re trying to hide my historical MH Record so as not to get found out.
There are probably hundreds of thousands of people in the UK in the same position as me.
My GP Surgery didn’t set up a Care Plan for me, they didn’t interview me, they didn’t get permission from me as they should have at the time, to put my name on the SMI Register. There was no active MH Medication in use, I had never claimed MH benifit in the UK, and I had never complained to this Surgery of feeling Mentally unwell.
It’s not surprising to me that people that complain are being BLOCKED by the NHS, as putting matters right would be very very expensive.
Thankfully I might have have escaped being coded as I am too old but anyway I can’t be arsed to deal with it for myself either as am in the fortunate position of not having to grovel for so called benefits or to provide intimate details of my life to numerous people I don’t know . I have a state pension which means I can do it and have no intention of ever taking the risk of visiting a medic again after decades of avoiding them. But I do care how others are being mis/used too. So I looked to see what the retention and disposal of medical records regulation is. Yet another massive maze to trawl through.
The coding you describe is a nightmare . I had no idea it was as detailed but find there is some pretty surprising information kept on us all often for decades without our knowledge. I assumed if you were not registered for many years files would be destroyed within a 5.6 periosd – which is what i was told years ago. Anyway Here is a sample from the Wales NHS site CONTNTS doc 886/ABHB-IMT-0407 Non Clinical and Clinical Records Retention Schedule Issue 3pdf
All records will be checked for Living Wills. So much for confidentiality.
Mental Health Records and CAMS – should be kept for 20yrs after the last entry in the record and 8 years after death.
For Children 20yrs after the last entry or at least until 26yrs old
There is a separate entry for maternity records which will alter the period for mothers with MI entries
At the end of retention periods records should be reviewed and TAKE ACCOUNT of GENETIC IMPLICATIONS OF THE ILLNESS. I f records are retained they should be regularly reviewed
For private patients although TECHNICALLY EXEMPT from public records act
– it would be appropriate to TREAT SUCH RECORDS AS THOUGH THEY ARE NOT EXEMPT
Psychotherapy records – 20 yrs after last attendance or 8 years after death in care setting.
Dditto psychiatric records
Research Ethics Cttees 3-5 years after end of trial
Suicide Notes – 10 years after a suicide
As you know the regulations may be a bit different in Scotland.
Obviously records are needed, most people would be happy to share information if guaranteed confidentiality and anonymity – that is never possible altogether though as some human person is doing the anonymising -and crucially if we were told in the first place what is being done with our records
_
In the US, I could have controlled what my ‘new’ primary care doctor (and all others) knew but I was having a pesky seizure issue …after leaving & quitting all drugs. In 2016-#1’event’, 2017-#3, 2018-#9, so far. I had to tell him….I was sure I knew what it might be….unfortunately. He clearly views me thru ‘Mental Illness’ goggles now. When I stabilize, hopefully, I will start anew.
I had all the ER CT’s (1st one;I thought was a stroke), subsequent cardio work-ups & monitoring, ENT testing, neuro MRI’s & monitoring, & finally the ‘internationally’ regarded Barrow Institute (think Muhammed Ali, patient and building donor)..as of June ’18 “we don’t know, we’re not sure”.
Rest assured I have brought ALL of them beaucoup science reprints regarding SHORT-term (a few weeks) antipsychotic effects on the pre-frontal (shrinkage), noting I took them for 11 years…..and NMS ‘event’ parallels–there are many.
ALL of these docs were varying degrees of polite, but extremely uncomfortable on this topic…I reassured them that I didn’t expect them to be familiar with this ‘niche’; I wanted us to learn together.
I found…to a specialist…they were stricken with the affliction of the inability to say “I. Don’t. Know…& want to find out”.
I had kept careful notes since the first event, a precise timeline, & editorial-free synopsis…nothing….. & no curiosity to go further.
And I have great insurance again.
Sigh…
My point is, in the states, there are HIPAA protections regarding ‘sharing’ of MH records one signs at every initial appointment with a new doctor; I make sure I restrict everything (get copies, I found a ‘leak’ at my dermatologist).
Going forward, I will hide everything until a crisis. Hopefully, I’ll be able to speak. This is a dangerous ‘secret’ I have to keep (psych medication history). I DO keep an ‘info’ sheet in my wallet describing ADR to ALL psychotropics including benzos with no explanation…AND my ‘freedom’ paperwork…I hope I don’t have to die before they find it in a crisis. Probably not.
A Mental Health diagnosis…even vacated…the gift that keeps on giving.
The gift that keeps on giving … sigh, Krista
I am very, very, very sorry if my doctor became suicidal from my formal complaint to his surgery regarding Seroxat …
I was here first, in my idyllic countryside –
They came -They saw -They Slaughtered
https://twitter.com/ClareGerada/status/1027974801200214017
Clare Gerada #FBPE @ClareGerada Aug 10
Ask the relatives of those who are bereaved if they are victims ! Complaints harm – the complainant, those who have been complained against & their future patients. Complaining should be a serious thing not as it currently is.
If Doctors can’t take the heat, they should get out of the kitchen; everyone has problems, even doctors, and it is an agreed tragedy, suicide by doctors, but, don’t hold them up as martyrs..
If Ms Gerada Wessely thinks she can stop complaints about doctors by talking about doctors’ suicides it should behove her to link to patient suicides
John Read @ReadReadj 4m
Let’s Talk Withdrawal https://youtu.be/NT6EuWd6cpY via @YouTube James Moore on
Guardian article 10.8.18 which failed to cover WHY long term use of antidepressants has increased.
https://www.youtube.com/watch?v=NT6EuWd6cpY&feature=youtu.be
James Moore @jf_moore
So here it is, @guardian knows more about long term #antidepressant use than #Psychiatry does.
.
Roll on No.3, Krista …
Shame Clare Gerada Wessely – her mis/use of bereaved doctors is sick.
The wife of Simon ex president of college of psychs has never made any attempt to prevent the number of non -medical people who kill themselves , She should be doing this by making every one of her many pronouncements to the media include a reference to the number of deaths and other harms caused by the prescriptions she and her colleagues have prescribed without informing people of the known serious harms. Clare Gerada – why did you state that you have never come across any such incidents in your long even if part time career when they are so well documented? How many medics might have killed themselves as a result of taking prescribed medications – are we likely to ever find out??
Clare Gerada – why have you never attempted to set up any kind of group for the those non medical bereaved people who are left to deal with not only the suicides but the lies told by the hierarchies in the medical and other ‘professions’. Is there more kudos to focusing only on those in your own club, more likelihood of a gong if you try shutting people up and blaming people for complaining? You are a group therapist yet your actions and and your angry ranting which have been stirring things up for along time now are likely to cause even more of a divide between groups Perhaps you might think of having some therapy to find the reasons for your hostility and anger and maybe concentrate with an open mind rather than a self interested one on reading the many accounts here and and on DH and other blogs. They unlike the forums you and colleagues set up are open to any reader and commentators.
One psychoanalyst some years ago made a proposal that complainants should be given therapy/analysis to find the ‘real’ reason for their complaint – the then CEO of Barnet Hospital was having none of it. Doubt the public will either although a campaign is probably being set up already to influence the public against complainants.
Sally
SEVERE MENTAL ILLNESS REGISTER RATIONAL CONUNDRUM
“…The rationale is that any patient with a severe illness, even if controlled or in remission, has a significant chance of relapse and hence should have an annual review, rather like patients with certain cancers should…”
BUT
…If a “patient” recovers as a result of rejecting treatment “suitable” for a Severe Illness, then the Rationale would have to be that the “patient” didn’t suffer from the illness to begin with, or that the “illness” itself didn’t exist.
FACT
The only people that do Recover from “Severe Mental Illness” are those that reject Psychiatric treatment.
BAD MEDICINE
There’s nothing wrong with a doctor enquiring after someone’s health. But there is something medically wrong with placing a person’s name generically on a SMI Register, as to most normal people this would imply ongoing Severe Mental Illness; and would be likely to mislead the next doctor.
EXPENSE TO UK TAXPAYER
If an employed person’s name does go on a SMI Register this person could automatically claim severe disability payment on account of the severe categorization.