Editorial Note: This is a third post in the six post Doctor Munchausen series. See Doctor Munchausen, I Presume and Dying for a Cure. A variation on this post first featured on RxISK.org some months ago.
Dear Luise by Dorrit Cato Christensen is one of most extraordinary books about healthcare ever written. Medical books are usually about great discoveries, great endurance, or triumph in one way or another. Dear Luise is about the dark side of medicine – the side that offers doctors the opportunities to kill without detection. It is set in mental health settings but the story of power and powerlessness can be found everywhere from the offices of primary care doctors through to arthritis or cardiovascular clinics.
Almost forever it seems, psychiatry has been “arriving”. For decades, its apologists have been saying now we are a branch of medicine. But nobody outside the field buys this claim. The extraordinary thing is that psychiatry was the first branch of medicine to have specialist hospitals, the first to have specialist journals, the first to adopt an evidence based approach, the first to eliminate some of the major illnesses it was called upon to cure. Maybe it needs to think again about what real medicine is all about.
Elsewhere in medicine, fifty years ago if a mother was concerned there was something wrong with her child but the doctors could find nothing it was common to give her a tranquilizer and dismiss her as neurotic. I had a younger brother whom my mother insisted had problems but the doctors decided she was neurotic and perhaps wrecked her marriage by persuading her husband to get her to take a tranquilizer. My brother died.
By the time I got into medicine, the pediatricians were telling us that even if all tests looked normal we should never dismiss a mother’s instinct. That’s what happened in real medicine.
In psychiatry to this day, if a mother voices concerns that things are not right with her child she will be regarded as toxic and the system will seek to blame her for all problems and to exclude her. They will bizarrely label her as a Munchausen’s syndrome by proxy mother. Things are probably getting worse rather than better. Internet forums are full of children removed from parents and then medicated even more forcibly if the parents complain. There seems to be almost nowhere to go with these complaints – no way to save a child. This is especially common in America but happens in North Wales also.
From an early age my daughter Luise displayed signs which would now almost certainly be recognized as Asperger’s Syndrome – at the light end of the spectrum. Many different psychologists, neurologists and psychiatrists struggled to arrive at a diagnosis. Initially it was thought she suffered from ‘hidden epilepsy’ and she was given heavy anti-epilepsy mediation. She was only eleven years old. This was to be the beginning of Luise’s mental deterioration and my struggle with the psychiatric system into which she later sank.
This system, we were to discover, is one which pays no heed to the voice of the patient or the family. We experienced an overrigid, Kafkaesque bureaucracy which seems incapable of seeing patients as individuals with strengths as well as symptoms.
Following her inital diagnosis, Luise was heavily medicated with anti-epilepsy drugs for four years. This treatment had a disastrous impact on Luise’s life and health. The doses she was given were suitable for a stout adult not an 11 year old child.
In June 1988 Luise was admitted to hospital following her third suicide attempt since she had started taking anti-epileptics. She was admitted to the same ward she had been on four years earlier where her treatment began. However a according to a new specialist Luise didn’t suffer from ‘hidden epilepsy’ – and never had.
The doctor’s order was that Luise’s medication should be halted, she should be treated as a normal girl and start living a normal life. But this wasn’t going to be straight forward. Luise hadn’t been in mainstream schooling since her original diagnosis. In addition, for five years Luise had been constantly told how very ‘abnormal’ she was, and that the medication could make her ‘normal’. She had been in and out of a vast number of institutions and had to talk to doctors and specialists again and again. The consultants all described carefully what she was supposed to be capable of doing but couldn’t. For example, she couldn’t hop on one foot which was blamed on the hidden epilepsy. And worst of all, when the medication she had been taking for years was suddenly stopped, Luise suffered from severe after-effects and there was nobody in the health care system who would help us with that.
All the social services could offer was that Luise saw a psychiatrist for her problems. I feared that a psychiatrist would put Luise back to the Hell she just had come out of – overmedication with anti-psychotic or anti-epileptic medicine, hospitalization and institutionalization. So now everything for Luise and me was about how to avoid any ‘medical help’.
In August 1992, Luise was admitted for a ‘psychiatric evaluation’ – just observation not medication. She had at that time been drug free for about four years. She was an adult and the evaluation was meant to measure, among other things, where Luise needed help to get on with her life educational wise.
Everything went wrong. From day one she was given high doses of neuroleptics. A week after Luise started on this medication she suffered from neuroleptic malignant syndrome (NMS), a medical emergency which leads to death if not promptly treated. After this terrifying episode Luise became extremely strange, not at all like the lovely daughter I used to know. I’ve later been told that this reaction is normal, but nobody told me that at the time. On the contrary, I was told that Luise had a terrible aggravation of her disease. She was severely psychotic and had to be treated with antipsychotics so that this condition would not turn into a permanent state.
I was scared to death and wasn’t able to think straight. Luise was in a completely different world. This became the start of our second nightmare that went on for years.
Considering Luise’s reaction to the neuroleptics it might have been reasonable to assume that the specialists would rethink the treatment. But no! Luise was given still more medication and different psychotropics (polypharmacy). Luise kept showing more and more signs of not being able to tolerate the treatment. No consideration was given to her pleadings regarding the negative effects the drugs had on her or to my contention that Luise was acutely sensitive to psychiatric medication. She began to hallucinate, she slept, slowed up, gained 35 Kilos, had Parkinsonisms, strange movements of the face (tardive dyskinesia) and chronic vomiting which led to an ulcer and often terrible pain. Her menstruation stopped. And on top of all these side effects, she sometimes lost consciousness.
I was deeply scared by this and told her psychiatrist about this phenomenon. He replied that Luise had just fainted to attract attention to herself and that this was part of her disease. I had to give up. I had this strange feeling that the psychiatrist saw me as a very irritating and disturbing person, who just obstructed his work. So he did everything to get rid of my intervention. He did not see me as the worried mother who was extremely distressed to see how her daughter had deteriorated. He didn’t see me as a person who actually knew my daughter and as such could be a resource in his treatment of his patient.
I watched powerlessly as my beloved daughter gradually succumbed to the devastating effects of the cocktail of drugs in ever increasing doses, the lengthy stays in psychiatric institutions, the regular use of physical restraint and the use of the law to enforce this regime of ‘care’. As her state got worse she became filled with anxiety and experienced psychotic symptoms, which inevitably led to a diagnosis of schizophrenia and more drugs.
In 2003, Luise spent a long time in a special psychiatric hospital. She was transferred so the experts could find the right treatment for her. In the chart notes on admission it was written that Luise should be stabilized and have her medication adjusted. After a stay of a year and a half, her medication was reduced a lot, and she certainly was a lot better. The diagnoses of mental retardation given by her daily psychiatrist many years ago was taken away. This change in treatment obviously didn’t please Luise’s daily psychiatrist. Maybe that was the reason why he wrote in Luise’s charts that during her time in hospital she had become increasingly psychotic, which was so very wrong.
But that note could give him a plausible excuse for increasing her medication again. When something is written down in the hospital records it becomes THE TRUTH. There was no account of side effects in Luise’s extensive records and the psychiatrists never accepted that Luise had any, even though she repeatedly told him about her severe problems. He just took her words for waffle and catalogued her complaints as an aggravation of her disease.
Luise tried almost every anti-psychotic on the market, often at the same time. The regime and doses were constantly changed and she didn’t get any better. In fact, she became increasingly worse. Why didn’t her psychiatrist ever reconsider his treatment approach? Luise deteriorated physically and got more and more psychotic as time passed. Her medication was increased to heights which corresponded to three or four times the highest recommended doses. She was hallucinating as never before. She was now at times running around trying to avoid the snakes and fictitious blood-soaked creatures coming out of the walls.
Why did the specialists never realize that something was completely wrong? WHY? It should, in my opinion, have occurred to them that Luise’s diagnosis may have been wrong. And if so, the medication would be wrong too.
It turned out that Luise’s diagnosis was wrong. When a psychiatrist finally started to listen to me, and more importantly started reading the different records that pointed in that direction, he declared that Luise suffered from Asperger’s syndrome and she should stop the psychotropics. Unfortunately by then it was too late.
Luise died in hospital in 2005, hours after she was given her first depot injection despite the strenuous objections of both Luise and me. We were convinced it would lead to her death and we had good reasons for fearing depot injection. We argued that nobody ever knew how much medication Luise could tolerate as she had been vomiting all the years. However, Luise foretold that the medication would kill her. She told me several times that on her tombstone should stand ‘the medication killed me’.
I keep asking myself ‘Why did it happen? Why couldn’t I avoid this happening?’ But I can only see one answer. I did all I could. But Luise and I didn’t get a chance to speak up about our experiences, and nobody was ever interested in Luise’s story. The chart notes in Luise’s long file did not show that anybody had ever read it. There was absolutely no continuity in her treatment, her notes just showed a long collection of single consultations where nobody ever wondered why Luise, after 10 years of heavy medication, didn’t get better.
So why do things often go so completely wrong in a very well functioning modern health care system based on evidence from advanced scientific research? Although Luise lived in Denmark and her story concerns the Danish psychiatric system, I know for sure that the same could happen, and does happen, in most other Western countries. Why is the treatment culture so extremely inhumane? Why do we accept the increase in forced treatment and coercion? It seems to me that it has become state sanctioned in the name of care and cure.
One of the reasons could be because the practice of psychiatry is based solely on the biomedical model which sees all symptoms as arising from some fault in the brain for which the only cure is medication – the same way as insulin is the cure for diabetes. When a mental health problem is considered to originate from a ‘chemical problem’ in the brain, the specialists can easily justify why it is important first to put that ‘chemical imbalance’ right. This approach consequently leads to the treatment of a ‘diagnosis’ rather than the human being. The patient all too easily becomes a dehumanised object and the doctor the all knowing expert.
Bad treatment stories like Luise’s damage people’s trust in the healthcare service. But as more people go public with treatment stories that have gone wrong, and even more importantly, specialists like Peter Gøtzsche come forward to speak about why psychiatric treatment, in their opinion, is not as successful as it was predicted to be in the fifties when all the new psychotropics came on the market, the system will surely be forced to change.Share this:
Copyright © Data Based Medicine Americas Ltd.
This story has just left me heartbroken, due to personal experience of this type of so called care, this is a story of Human right abuse, and begs the question who actual owns our children, maybe we should stop registering births, as they would not have their so called power to do this, truly devastated at this story something must be done to change and challenge, maybe we should call for the Doctors who are prescribing these so called cures, to try them self 1st, then they may think differently, try before prescribe system, I bet that would stop it. 🙁
This horrendous story should prompt us to reconsider what we know of mainstream psychiatry as now practiced. The Council on Evidence Based Psychiatry in the UK offers the following insights about psychiatry today:
13 Unrecognized Facts.
1. No known biological causes
2. Myth of the chemical imbalance
3. Diagnostic system lacks validity
4. Psychiatric drugs cause altered mental states
5. Antidepressants have no benefit over placebo
6. Worse long-term outcomes
7. Long-lasting negative effects
8. Negative effects are often misdiagnosed
9. Psychiatric drug withdrawal can be disabling
10. More medicating of children
11. Regulator funded by industry
12. Conflicts of interest
13. Manipulation and burying of drug trial data
Those interested in challenging the standards of psychiatric practice may find common cause with others at the HDC Project (Healing the Distressed Consciousness). See debategraph.org/hdcnegatives
Fair disclosures: I occasionally contribute at HDC though I am a medical layman.
Coercion masquerading as medical treatment is the bedrock of political medicine.
You May Consider adding this fact to the list.
Nearly 40 years ago I attended an Amnesty presentation about the mistreatment of Russian dissidents as mental patients including enforced medications. We were addressed eloquently by Tom Stoppard who already made the distinction between the misuse of psychotropic medications for political ends and the general misuse of psychotropic medications. Already, you could possibly detect a note of disquiet as if he himself was not quite sure that the distintion was entirely justified or at least total – at least it separated what was happening in the Soviet Union from what was happening in the UK.
Whatever, the question is clearly begged by now that pharmaceutical products are part of state ideology and if you do not buy into it you are almost by definition a political dissident. Also, increasingly your concerns will not be taken up by politicians or the mainstream media. The politicians particularly will defer to the medical bureaucrats: the journalists are pummelled into line industry lobbyists who pose as “the voice of science” – most of them will simply operate consciencelessly as kite-flyers for the next product. Meanwhile, the products are increasingly the means of social control in every aspect of our lives.
But also, of course, the real things governing our lives – often with catastrophic consequences – are removed to the fringes of public discourse. Things which are thematic to modern life are reduced in public perception to occasional incidentals, if percieved at all.
It is tragic to read a story like this which must be replicated with slightly varying details in tens of thousands of cases. An important and dignified record of the new Gulag, perhaps.
Nobody ever wondered why she never got better.
Surely, this is the nub of it.
Mental asylums are full of people who never get better.
Parked on these drugs is a false promise.
Do we assume that it is not intended that we get better.
Without drugs there will be no psychiatrists.
It has blown out of all proportion when it is the norm that a normal person is drugged.
Our choice, our lives; give us the facts and no one would ever take a prescription mind-bending drug again.
In the latest statin debate, a senior medical person stated that statins weren’t forced down peoples’ throats…of course, they are. You visit a Professional for guidance and they are as useful as the force of a second-hand car salesman…..how many people have you seen who leave a surgery without a prescription?
We live in a tempting society. The mere hint of happiness, living longer, pain free existence, will challenge anyone to say no thanks I’ll go it alone and do things my way.
Serendipity might appeal to the masses; control over your own destiny is surely preferable…….
Love to Dorrit. Luise is a beautiful child, you can see her in her eyes.
Dorrit, thank you again for sharing your story, and out of your pain, may change happen. It is terrifying and heartbreaking to read what can take place within a so-called medical profession that promises to – “First do no harm”.
Annie is right – no one ever gets better. The life-long drug regimes do nothing more than perpetuate a condition that may well have been episodic in the first place – be it because of trauma or an accumulation of stress-related events which might temporarily drive a person to the brink. Instead, the patient is condemned to a life that often precludes a job, friends, relationships, marriage and a family. Or worse – as in the case of Luise.
Psychiatry is the only branch of medicine where toxic drugs can be prescribed without a single test being carried out. In other branches, professionals would and are struck off for doing just this – treating the symptoms. [See the experience of Dr Barry Durrant-Peatfield.] And there are tests that can and should be carried out to exclude a physical cause of psychosis – but this just doesn’t happen.
Assessment of psychosis
Step-by-step diagnostic approach
“The evaluation of the acutely psychotic patient includes a thorough history and physical examination, as well as laboratory tests. Based on the initial findings, further diagnostic tests may be warranted. Organic causes must be considered and excluded before the psychosis is attributed to a primary psychotic disorder. The most common cause of acute psychosis is drug toxicity from recreational, prescription, or OTC drugs. Patients with structural brain conditions, or toxic or metabolic process presenting with psychosis, usually have other physical manifestations that are readily detectable by history, neurological examination, or routine laboratory tests.”
Like Chrys – I also deplore that term ‘treatment-resistant’. It lends some kind of respectability to their failure to treat or alleviate symptoms. That is just not good enough.
I’ve often asked myself why there are so many arrogant, patronising, dismissive doctors within psychiatry. Perhaps it is the use of mental health sections that pollutes their psyche? The unquestionable authority to mess with people’s lives? Power corrupts…….. etc?
We need a complete paradigm shift, and I hope it happens soon.
Bless you Dorrit.
I wrote my inhumane treatment by psychiatry in a book named Judging Judi, available at Lulu.com. I wish there were some way that all of us who have been damaged by being labelled mentally ill and drugged with dangerous neuro-toxic drugs can get a class-action law suit, even if it would enlighten the public how many of us there really are out there who have had their lives destroyed by being mismanaged by psychiatry, who are supposed to be medical doctors and should first “not do any harm”. They keep harming people and are getting away with it as their patients are not considered credible, once they are given a psychiatric label. What comes first the chicken or the egg?.
Hi ,as a Litigation friend and pharmaceutical researcher,i
have appeared in the High Court on behalf of those badly
injured by psychiatric intervention.
As the Law stands their is no chance of winning an action
using domestic legislation.Even with Proof of Damage a claim
in negligence would fail.
However, there is a way to get the Court to acknowledge and
possiblly declare it is Not in the Best interest of the claimant
to recieve neuroleptics. If this can be achieved only once,
then precedence would have been set.
That’s why I spent 55 days in the courtroom and examining 33 witnesses to have the case on record. I knew from the advice that I received from lawyers that if there were a chance to win or set a precedence, I would have to do it myself, which I did. I spent $100,000 on medical experts, etc. etc. the defense, CMPA, Canadian Medical Protective Association spent $180,000. I lost, but, “due to the circumstances of the case”, Judges words; the judge did not award them their costs. I Appealed, I lost and the judge in the appeals court awarded them their costs. I filed a leave to appeal in the Supreme Court of Canada and it was not heard, so technically I did not lose, but CMPA sent me a bill for $180,000, I declared bankruptcy, but wrote the whole proceeding in my book Judging Judi. I would do it all again as I felt that psychiatry has to be stopped from continuing to ruin patient’s lives with neuroleptic drugs, and there is nothing that can be done YET. about this.
As a mother of 3 sons who I have advocated for when psychiatric patients in and out of the system, and still do so for two of them who have mental disorder diagnoses/labels I am so sorry to hear of Dorrit Cato Christensen and her daughter Luise’s story and outcome. It is painful to read and to consider. A mother’s pain. And a daughter’s pain. Thank you for speaking out.
My mother was diagnosed with schizophrenia in the 1950’s in Perth, Scotland, due to having periodic “nervous breakdowns” although she didn’t “hear voices”. My two younger sisters also experienced psychoses as teenagers, were hospitalised and put on psych drugs. I had puerperal psychoses after painful, induced childbirths, not with my first son in Ninewells Hospital, 1976, as I had an epidural which took the pain way when induced. The system couldn’t seem to wait for me to have a natural childbirth experience but to have me deliver on the day shift. So all my sons were born in the afternoon. Sons 2 and 3 almost at the same time, just past 3pm. Before the day shift went off duty. I was forcibly injected with chlorpromazine, then coercively given risperidone in 2002 when experiencing a menopausal psychosis. In between times making a full recovery.
I think that my mother, sisters and my experience of psychiatry prepared me for my sons’ incarceration and forced treatment. An apprenticeship in one sense. However in 1995 when my oldest son went into a psychosis/altered mind state my heart was broken because I knew what he and I would have to go through. I took him to the GP and then to the psychiatric ward. When I left for a short while he got a head injury when trying to escape. My youngest son in the same ward got a hand injury in 2012. History repeating itself. My middle son I took to a different town in 1999, where he was living, so that he would be more safe in a different health board area. He is the only one of my sons to be positive about his psych treatment. For it’s a postcode lottery, the psychiatric health care system in Scotland. However I am expecting things to improve and am working towards that end.
I can testify that even up to 2012 attempts were made to separate me from my youngest son and to stop me advocating for him at clinical meetings in the locked ward. But I persisted despite the veiled threats from a consultant psychiatrist that if I didn’t support him/the doctor then the outcome could be a medium secure unit or the State Hospital. Huh. That made me more determined to stand with my son. I knew that other young men had ended up in the high secure unit. They had given their testimony at an event I’d organised in 2009 through Peer Support Fife, a voluntary organisation I ran.
I can’t abide the term “treatment resistant”, blaming the person for drugs that don’t work and an impotent system. We need to call a spade a spade or a shovel. It’s not people who are at fault but a failed paradigm. Psychiatrists resorting to brain surgery for mental illness and the fruitless search for biomarkers, comparing mice to people, really get my goat. The dehumanising of a person’s experience as if they are nothing more than cells and neurons. Reducing us to labels and behaviours when we are complex individuals with stories to tell and lives lived.
I have always known that engaging with psychiatry was like a game of Russian Roulette, especially nowadays. Cocktails of psychiatric drugs are very risky and I know this from personal experience, having swallowed a bottle of venlafaxine in 2002 on impulse. I didn’t speak of it for years. My family were angry with me. I was ashamed. But I got back up and on with my life, waiting for the opportunity to get out from under the chemical straitjacket. Tapering the drugs against the advice of psychiatry. My unbelief in mental illness was always a strength.
I do believe that the psychiatric system is being forced to change. They know that drugs aren’t the be and end all. It’s obvious. Making all of us bipolar isn’t the best way of going about it. There has to be truth and reconciliation (I heard Rufus May speak of this). The mothers won’t be silenced. We are like the Chorus in Euripides Medea, the Corinthian women, narrators and influencers of opinion. Echoing what is happening while also guiding the action: “And my own heart suffers too”.
The treatment of women in the health care system is especially outrageous, especially in gynecology, obstetrics and psychiatry. In these disciplines women are typically not treated as sovereign entities who can decide about themselves, their bodies and the course of treatment but like objects which either serve a purpose (an incubator and deliverer of a baby) or are to crazy or hysterical to be treated seriously. This causes a lot of trauma and tragedies including the recent story of the Italian women caught up in the UK’s psychiatry complex:
It’s sick and it’s ridiculous but it continues on…
Yes I agree about women in the health care system losing their agency and the issues of women in psychiatric settings who are at risk of sexual exploitation, due to mixed gender wards and psychiatric drugs that disinhibit and take away decision making abilities.
To have your baby taken away against your will because of a mental disorder label/condition is a desperate measure. As a mother I couldn’t have borne that. The reason I got off the chlorpromazine within the year, after psychiatric hospitalisation in 1978 and 1984, was to take care of my children. I had to do it myself, taper the drugs and break free. The system wasn’t going to do it for me. That’s not what they are about.
David Healy’s posts make disturbing reading. Why are there still but a handful of doctors prepared to speak out?
For women reading Dear Luise, every mother’s nightmare comes to the fore. And it is far too late to say to Dorrit, ‘our hearts go out to you.’
How strange, how dreadful, that we permit a healthcare system that fills us with dread and foreboding and with so much attendant despair and pain, when history is full of such atrocities. By our silence we are all complicit in allowing certain physicians complete freedom to ignore ethics, medical or otherwise. It is after all but a short step from what Dorrit Cato Christensen describes, to the barbarous medical experiments which abound almost worldwide.
We elect our representatives, but power of the people is always negated. Ruthlessness, corruption and inhumanity (attributes seldom stemming from ignorance alone) prevail in multiple hidden areas – and yes, comment is totally ‘removed to the fringes of public discourse.’
My thoughts turn back today to a friend’s decline, and demise, in a hospital north of London. Perhaps we all know someone who has died in similar circumstances, whilst undergoing hospitalised ‘healthcare’. From a cocktail of drugs and ECT, my bright & bubbly friend (diagnosed bi-polar) ended up semi-comatose and mute. She died in distress. Living in a hell not of her own making, she ceased to speak for the final few months of her life. Her family grieve, but did not protest the recommended ‘necessary treatments’.
How many of us, I wonder, are destined to follow the same despairing road?
Biomedical model, is far from the only nasty game in town!
Very sad, but, I’m afraid, far from unusual, story about poor Luise.
I am a little concerned, however, that campaigners against the pharmaceuticals and ‘biomedical’ side of psychiatry do not seem to be aware, that there is an equally insidious psychiatric model which is spreading rapidly and damaging people like Luise, just as surely as the ‘biomedical’ model.
The ‘biopsychosocial’ model spreading from what, in the UK, is known as the ‘Wessely School’ is every bit as damaging, disempowering, and even, torturous, as the brain chemical imbalance model. In Denmark, the case of Karina Hansen is as disturbing as that of Luise, above, though, thankfully, it has not proceeded so tragically far as yet.
It simply is not enough to think that removing the bulk of the drugs from psychiatry will solve the problem: they simply get replaced with other forms of enforced ‘treatment’, and the current ‘cure-all’ that is being pushed everywhere, is CBT/GET. This is little more sophisticated than boot-camp/sink or swim plus attempted brainwashing, and it is used for every medical condition that mainstream medicine cannot be bothered to investigate properly.
Just as in the Luise case, the views and experience of the patient and the parents, are ignored, because they are deemed untrustworthy, and, by definition, the psychiatrist knows best, so, therefore, anyone who disagrees with a psychiatrist must be mentally ill themselves. (As you noted with your Munchausen theme, this is actually the psychiatrist projecting his own disease on to the patients and parents.)
Therefore do please be aware, that the biomedical model is far from the only evil inflicted on us by psychiatrists: a great many people are being very seriously affected and maligned and abused, as a result of the biopsychosocial model. Sadly, removing the drugs, is *not* going to solve the problem: which is the extraordinary, and undeserved, power, currently given to psychiatry and psychiatrists.
Agreed that power and the abuse of power is the issue not drugs. We need to find mechanisms to combat the unequal power balance in every doctor patient relationship – this is one of the main reasons for RxISK.org. But in situations where the power imbalance becomes extreme we need something to strengthen the hand of a daughter, or mother when they do have the best interests of the patient at heart which is going to be more often than not.
“……..something to strengthen the hand of a daughter, or mother when they do have the best interests of the patient at heart which is going to be more often than not.”
This is exactly what has happened in my family.
Having seen from an early date what effect drugs were having on our son, I made my opinions very clear. I was then branded as being ‘in denial’, unwilling to accept the four different labels eventually attributed to him. Their aim then became how to treat my son but at the same time protect him from his deranged mother. They completely lost sight of what might help my son, and concentrated instead of how to thwart what they perceived as parental interference. Bad reactions to drug after drug were blamed on non-compliance, even although most of these drugs were administered and withdrawn while in hospital! Depots were the worst – and caused such suffering. Oh they wouldn’t admit to that though, they just referred to these awful episodes as ‘non-response’.
And there is nowhere to turn for help. The system is constructed in such a way that the psychiatrist has absolute authority. The system is wrong.
The depot drugs ARE the worst – they involve taking ownership of the person as a long term psychiatric patient. My experience is that depots have disabling side effects, plus rebound and withdrawal syndromes, that lock a person into longterm ‘illness’.
This depot Modecate comes with an almost guarantee of permanent neurological damage:
Manufacturers’ Warnings In Clinical States: Severe adverse reactions requiring immediate medical attention may occur and are difficult to predict. Therefore, the evaluation of tolerance and response, and establishment of adequate maintenance therapy, require careful stabilization of each patient under continuous, close medical observation and supervision.
Fiachra — thanks for the link. Terrifying.
Re the withdrawal syndrome – yes I saw that very clearly. I suspect it is well nigh impossible to gradually withdraw from a depot. They can only ‘step’ down by using available dosages, or lengthen the time lapse between administration – e.g. from one week to two weeks etc.
Twice they put my son on Clopixol depot. His lawyer at the time was shocked. He said this drug was the bottom of the heap – a filthy drug – usually reserved for sex offenders in the state hospital as it causes impotence. Parkinsonism was desperate. Even on Procyclidine his whole body shook so much he couldn’t get to sleep at night – but hey, no worries, they had something for that too! Out comes the Zopiclone.
When ‘they’ eventually took him off it, I phoned MIND to ask how long it would be till this drug was expelled from his body – and I was told two years. This may not be true.
The second depot was Risperdal Consta. Psychiatrists wouldn’t listen to my complaints about the dreadful side effects, so in desperation I phoned the drug company several times and told them in no uncertain terms what I thought of their drug. They said they would speak directly to my son’s psychiatrist, but she had left by then [A locum] The drug was stopped.
Yes it’s all about ownership.
Unbelievable they could do this to a young man – just because I told them the drugs were causing him to be mentally ill!
How dare I suggest such a thing!!!!? Silly woman that I am……………..
Did you manage to get of the depot injection .
On 300 clopikile depot and 100 depokote
WAs sectioned but been out for three months , I am a zombie I have weaned of depokote to 250 but the con at clinic will not let me see doctor Said she spoke with doctor and. He said no weaning of he refused to see me.
Also on parkingson drugs for my shakes.
What meds are you on now , how did you sean of.
These drugs totally thrash a human being, and the doctors that prescribe them don’t like being found out!
I have 30 years of Recovery as a result of NOT taking my medication, (Modecate Depot). I tapered slowly with oral medication.
Please what oral meds did you take .
How did you wean your self off clopixol depot.
Please advise I am desperate.
I am an independent pharmaceutical researcher(psychiatry).
I have given evidence in Court several times regarding
neuroleptics, always supprising the Judge about how dammaging these substances are.
A joint action at Court would expose the whole sham of psychiatry,
“Agreed that power and the abuse of power is the issue not drugs. We need to find mechanisms to combat the unequal power balance in every doctor patient relationship – this is one of the main reasons for RxISK.org.”
– Information liberation: Challenging the corruptions of information power. http://www.bmartin.cc/pubs/98il/
– RxISK: very useful for pharmacological surveillance. I like it.
“But in situations where the power imbalance becomes extreme we need something to strengthen the hand of a daughter, or mother when they do have the best interests of the patient at heart which is going to be more often than not.”
Re: completely agree.
P.S. I would like to donate data and results of my pharmacological research of unpublished and misreported studies to RxISK.
I don’t own this data: analysis/results belong to the public (it has been downloaded from public databases: ClinicalTrials.gov, PubMed, WHO ICTRP). I believe it will be nice to see information of related to hidden / misreported research on RxISK. Here is the data: http://figshare.com/authors/Jorge_H_Ramirez/587826 – please feel free to use it and don’t hesitate to ask me anything about it (e.g., I can provide you a list of unpublished / misreported studies).
All the best,
I have worked for 5 years as an advocate for those with mental health problems under section in mental health units. I am sorry to report my experience which has at times concurred with what has been said. To do my work I am required to be a trustworthy citizen but I have no special medical training – I look at things with an open mind I hope. It is hard to see how psychiatrists can handle the difficult situation they find themselves in – They know very well that the drugs are blunt instruments, mostly sedating with effects on individuals varying. I have been told how psychiatrists tend to prescribe a drug because they are familiar about it – that they will try others in turn to find one that seems to work best and that they can even joke about being an “agent of social control”. Sometimes the pharmacists are very helpful in knowing and being prepared to speak about the effects of drugs. Often I have seen how it is the nurses and care assistants who know the patients as people and provide some understanding and help. With the closure of more beds, less time per admission and the move to care in the community it has been admitted to me that we are taking more risk – And, I seen how this plays out with there being too short a time to adjust or change medication in a carefully supervised environment – This believe must lead to people being discharged into the community on more medication too. I have heard it explained to me by a psychiatrist that the outcome for the treatment of shizophrenia in the Western medication model approach is not seen as advantageous over those places where there is less access to psychiatrists and the drugs. It is clear that we now live in a society that takes large quantities of many medications (eg the 53 million prescriptions a year for antidepressants) – This disturbs me and particularly when you consider the side effects we are taking on – some of which remain after stopping taking the drugs – And knowing how such drugs are now, it appears, also affecting future generations. I have become deeply concerned about all this and I wonder about the answer, the future.
It seems to me that it is likely that our faith in the drugs, the doctors and our government will be shaken – And that the impact will be finally seen with the attendant costs to human happiness.
I believe we need to care more for each other as humans, as families and as communities – with the use of less medication and other treatments like ECT. I believe we have to live with the wide variation of human mental health and accept this more. And indeed, I would say that my personal experience of those I find in mental health wards is that they are often much more self-aware and are sensitive people – compared to the world outside which I see more as containing some astonishingly “bonkers” people who insist that they are absolutely fine.
I wish that all may be safe and well, contented and happy.
Every ‘sick person’ is a financial opportunity
Individually worth £160,000 plus/year
It is time we expose the awkward and uncomfortable “ pink elephant in the exam room”, which leaves patients and doctors engaging in often silent battles during their interactions with one another.
Patients now challenge and question their doctors and are no longer submissive to their authority. The all too familiar saying “doctor knows best” is no longer blindly believed by patients. Yet, the some doctors hold firmly to this antiquated mentality.
This authoritative battle is causing unnecessary harm to patients all because a physician insists he closes his eyes in order to avoid the shades of pink and the beast that stands so boldly in the medical exam room between him and his patient.
Patients do not need authority or labels to hide what doctors do not know and they most certainly do not need treatments that cause lasting physical and psychological harm.
Egos must be tossed to the waste side and these battles must stop, if we are going to win the mental health war. We must all put down our authoritative weapons and label guns, and give collaborative care a chance.
I concur with Ms. Mildon. As I have written in a previous editorial published by David Healy (“I Get By With A Little Help From My Friends”), doctor-patient collaboration is the model of the future; the command economy of authority is the model of the past.
As several other contributors have suggested, it seems to me less likely that the process of change will be led by physicians, than by patients who demand higher standards of care and human competence of their physicians. We can arrive at that insight without impugning the motives of doctors, or making them out the villains of the piece. It is time that we recognize and accommodate nocebo effects as well as placebo. Nocebo is well documented: patients get better outcomes when their doctors establish rapport than when they enforce a professional distance that is accurately read as a lack of personal engagement and empathy.
I experienced adverse effects from psychotropic drugs that exacerbated my physical symptoms of Fibromyalgia and myalgic encephalomyelitis from 1995-1998. It took me years to recover my physical health and strength. I had another encounter with psychiatry in 2013 due to mismanaged care that nearly cost me my life. I now have warnings placed on my medical records that hopefully will protect me in the future if I am too ill to speak for myself. This erratic and one drug fits all attitude by psychiatrists is ruining more lives globally than can be imagined. I have written my negative experience with psychiatry in the book Judging Judi available at Lulu. Com
If you are an aware sort of person and throw yourself around meeting all sorts of oddballs, you will realise that each and every one of these people is a candidate for a choice of drug.
It is the smart ones of this world, who don’t go near anything to do with the medical/mental health world.
If, the power imbalance needs to be shifted and the majority of medical persons are looking at our best interests, highlighting dangerous cases might not be the most helpful thing to do.
I know people who are dirty, alcoholics, who have behaviour that seems quite extra ordinary to me – you see all sorts living with Glaswegians in a massive caravan park – they are not drugged, have no intention of being drugged and are actually very capable of living within their own milieu in a way which we might not consider especially laudable, but, live and let live……
It is the judging of others by others which we all do…it is all relative to where we place ourselves…it is just unfortunate that getting your fingers burnt with medication is one more hazard of modern life.
J, aged, 76, is my neighbour. I am in most days with black bags picking up the empty bottles and rubbish all over the floor, the dog wee and excrement…I take her shopping and the whiff of her almost makes you pass out…
A lot of people need to get out more..open themselves up to meeting these people.
J has never seen a doctor, has no intention of seeing a doctor…comparing the two of us….who needed the ssri and benzos, more?
I help J because she is hilarious…her sense of humour makes you crack up…she has helped me in ways I did not think possible…I would rather have her ‘normal’ than other people’s version of ‘normal’.
Half an hour away, the mental asylum rumbles along…if J knew where I have been and what drugs I took and how I was judged, I know for a fact, that she would wet herself, seeing the funny side…but, I have no intention of spilling the beans and in the park, I am just clean and smart and funny and walk my dog…like I used to…but with a rather larger sense of humour than I ever had and a rather larger sense of self…it really is best not to allow anyone to try and get into your head..it is your head…your property…caravan life has it’s up side, although a million years away from the life I used to have, which I must stop mourning the loss of… it is not helpful to brood on the Killing Fields…but, it is helpful to keep talking about it…
God bless this Blog…and all who sail in her…
JEREMY BOND>>>> Very sensible Words, and what a horror it must be to be professionally onlooking different patients caught in mental Health care.
Perhaps since you do not have emotional ties in most cases, you could also more freely question authority?
I know they won’t listen much since you say you lack Medical background, but hey, atleast they can’t call you a grieving relative.
I am in no sense or form jealous of what you get to see, but I’m glad you act and speak up here.
Ove The Swede
As a shortbread eater, albeit, English, this sort of ‘little’ piece of journalism sums up why I was drugged into stupor and went, beyond, the, Loch Lomond, song, You’ll take the high road and I’ll take the low road…
It seems to me, that the S Daily Mail should go back to reporting a few ‘unhappy’ accidents’ and a few ‘unhappy accidents’ should be poked up the Pinocchio noses of those doctors who hide behind this charade.
Scooootish Daily Mail
HOOKED ON HAPPY PILLS?
NO, WE REALLY ARE DEPRESSED
Scotland is not a nation hooked on happy pills – we really are that depressed, according to a new Government report.
Concerns have been growing about the country’s soaring anti-depressant bill, which rose by £10million last year, with a record number of Scots on medication.
But, in a ‘bizarre’ response, the Scottish Government has said the increase is actually down to more accurate diagnosis and that depression remains under-treated, suggesting it expects the figures to rise even further.
When the SNP came to power in 2007, it promised to increase the availability of counselling and talking therapies – and cut anti-depressant use by 10 per cent.
But last month it emerged that nearly 5.5million items were dispensed in 2013, up by 275,000 on the previous year and by a million since 2011. Now, in a new report, Key Information on the Use of Antidepressants in Scotland the Government’s mental health division insists this ‘isn’t necessarily a bad thing’.
The Report says: The rise in prescriptions of anti-depressants in Scotland is for the most part explained by better diagnosis and treatment of depression by GP’s.’
Scottish Tory Health Spokesperson Jackson Carlaw said: The fact remains that the SNP made a categorical promise to reduce the number of anti-depressants prescribed in 2007. Every year since then the numbers have risen.
‘Instead of trying to address the matter, the Scottish Government has produced a bizarre report seemingly attempting to vindicate the SNP’s election manifesto.’
Singing Happy Days are Here Again…sugar whistles…toute de suite?
Boys in skirts are better than men in short trousers…and girls in tar & tan are better at the Sword Dance and can flick them all away….
I suspect it should read “Scotland is now a nation which is hooked on happy pills”.
In the age of corporatocracy independence is a red-herring. Also the total numbers of children in Scottish schools diagnosed with autism has been rising accorrding to official figures by in excess of 1,000 every year for the last 5 years – knocking on a rate of 1 in 30 children perhaps – and no doubt all “more accurate diagnosis”. The Macbeths are really murdering sleep in 2014.
I am a Scottish critical writer, activist and campaigner, living in Scotland and was able on 3 occasions, after psychiatric treatment in 1978, 1984 and 2002, to make a complete recovery from “mental illness”, by tapering the psychiatric drugs and getting back on with my life. Therefore I want to defend the land of my birth and the freedom I have in Scotland to speak out and to challenge the psychiatric status quo. I may be critical but I don’t want to live anywhere else although I do want to seem improvements in psychiatric settings and mental health services. It’s not about party politics, in my opinion, but about system change, whoever is in power.
I just want to let you know that I mentioned this post here:
Very interesting book, I definitely want to read it.
All the best,
great – thanks