Showing 87 of 87 comments.
Thanks. I am interested and will read it
Thanks – I am interested and will read it
You’re not talking to yourself Sam – as the parent and carer of a dissociative voice-hearing son I am reading your views and insight with great interest, and making the odd cry of ‘yes, exactly’ as I do so.
The value of ‘SO’ / second person knowledge for example – although not as insightful as yours I did offer mine to Noël at the time of her search for first person experience. Maybe she will broaden the criteria for a future study ?
My experience has been that rights are only theoretical. The patient / victim DOES have rights – until he or she chooses to exercise them, at which point they are removed. Similarly with ‘nearest relative’ in the uk. Certain (very important) rights are prescribed to the role, but if you choose to exercise them in support of a loved one’s wishes, you are stripped of the title and of course the accompanying rights.
Reducing the debilitating dose of massive tranquillisers allows the victim to think more clearly ??
I am now off to drive my car. I will talk on the phone whilst doing so because, although I have had a couple of accidents in the past, I was not talking on the phone at the time. Furthermore, when I have talked on the phone whilst driving I have never had an accident. This is sufficient evidence that talking on the phone whilst driving is a reasonable accident prevention measure.
No, you should not feel love, but contempt or perhaps pity, for those that have ignored your opinion and your protests, worked against you rather than with you, used the law to bulldoze their way through your daughter’s life and carried on doing the wrong thing regardless of most evidence.
I am six years into a similar battle on behalf of my son, and the less contact he has with the traumatic ‘system’ and the less medication he takes (slowly, God, ever so slowly), and the more he engages with kind (non-services !) people his own age, and the more he believes he has some agency in his own life, the better he becomes. ‘Full recovery’ and ‘drug free’ is still a long way off but I no longer hope for it – I now believe it is achievable. As oppose to the ‘incurable disease’ and ‘lifetime of medication’ that the deluded / deceitful ‘treatment providers’ would have us sign up for. (I fully expect the medical explanation for his complete recovery and eventual drug free existence to be ‘his disease has run it’s course’, but f*ck ’em). I think the final piece of the recovery jigsaw will be for him to believe, like I do, that he does not have some mystery ‘illness’.
Keep going !! I’m guessing your daughter is late teens / early 20s. If it takes you another 5 years to win the battle, that means she might have another 60 left, with which to live the fulfilled, happy, independent existence you want for her.
The background to this study states – ‘There is lack of long-term controlled studies evaluating treatment effects of antipsychotic medication.’
It goes on – ‘A complete investigation should include the service user perspective’
But what a perfect example of the nature of the problem. The researchers have effectively acknowledge that some well paid idiot might actually undertake (and get funding for!) such an investigation without the most relevant perspective of all. ANY investigation without the service user perspective is a totally pointless, worthless, insulting waste of time and money.
A complete investigation absolutely and unequivocally must include the service user perspective.
So here’s a thought, all you researchers out there – thousands of MIA readers have lived experience of the impact of receiving antipsychotic treatment.
To be fair AA, Facebook may not be the best place to actively oppose any authoritarian regime. See previous comments on surveillance and repercussions.
The only reason Facebook is the world’s biggest surveillance machine, Oldhead, is because people don’t listen, or even pause to think about it themselves for a minute.
Does no-one remember the English teenager who, on arrival in the USA for a holiday, was refused entry for an innocent comment he had made to his friends on Facebook ?
Whilst reading your piece I repeatedly found myself saying “Yes, exactly” and “Damn right”, there is so much of resonance in there. Your point about your own words getting you a diagnosis but unable to get you free of diagnosis is one that psychiatry should consider deeply.
It is essential for those of us still trying to escape, or trying to help others to escape, that we read of other successful escapees, (even if you don’t consider you have reached the top of the hill, you appear to be on the climb, and perhaps more importantly, have lost the search party)
Thank you for posting this.
Your account of the psychiatric system viewed from the perspective of a parent attempting to rescue a beloved offspring from that system is damn near perfect.
Reading your latest post reminded me of this. You may have seen it. The phenomenon of taking a placebo and knowing it is a placebo showing some beneficial effect.
Absolutely, but at every turn it seems the inhuman Mental Health Act trumps the Human Rights Act.
Rather than admit to hearing voices or having delusions and ending up with a CTO, it’s much better to commit a crime or two and get yourself an ASBO. You don’t get drugged on an ASBO and they are easier to get off.
The benefit is to the psychiatrist. Everyone else can go to hell – patient, patient’s carer, patient’s family…
Wonderful, Boans. And wonderful Dr Hickey.
I too, given similar reassurance in my own beliefs from great articles such as this, in an attempt to advocate on a friends behalf, was granted an audience with his psychiatrist. My polite questions were very quickly met with the request that I put them in writing to the hospital managers.
Hardly a win, but if ‘they’ know ‘we’ know, they might think twice before doubling the latest dose of ‘meds’ that has proved itself entirely unhelpful.
You (and Noel) have got me wondering – how many of us ARE out there ?
By ‘us’ I mean parents (of adolescents or young adults troubled by known or unknown trauma), who through well-intentioned ignorance allowed or even encouraged (god forgive us) our offspring to become embroiled in a mental health system that we now consider to be responsible for their current (much) worsened mental state. Where the initial trauma, whatever that may be, has become overshadowed by the trauma of the subsequent ‘treatment’. Where the current symptoms of our ‘patient’ bear no relation to their original symptoms. Where the system that welcomed us with open arms now attempts to brush us aside. Where the people who listened intently and knowingly to everything we had to say, scribbling comprehensive notes as we spoke, treat what we now have to say with ridicule and contempt. And where, when we admit it’s all been a terrible mistake and try to retrieve our loved one to a place of safety, all of hell breaks loose.
Has no one else already called it the Randle McMurphy bill ?
I agree. And if you can see that this is the case, and as a parent of a ‘patient’ I can also see that this is the case, why the hell can those responsible not see that this is the case ??
I share your pain, and her’s. I see no route to any kind of recovery in these places, only further pain. Get her out. Somehow. There must be a way.
From the perspective of my experience, observation, and current situation, this is one of the most interesting pieces I have read on MIA and possibly the most personally relevant.
Please do not stop using the term dissociation, and please, please, keep on with your trauma-psychosis research despite the stake you mention. I am aware of it – a UK psychiatrist I have met several times who believes, as I do, and as you appear to, that the roots of psychosis lie in trauma, tells me of the appalling reception his views receive from mainstream psychiatry.
Tellingly though, whereas my son’s NHS consultant could only hold his attention for maybe 2 minutes before he either clammed up and looked at the floor, or dissociated to another place, on each of the three occasions Dr Crazy-Trauma-Ideas has met my son, he has had an hour-long conversation with him.
On ‘diagnosis’, my son has been labelled psychotic, then schizophrenic, then schizo-affective, then schizophrenic again. Whereas his ‘symptoms’ are clearly those of dissociative PTSD – to the letter. And no, the irony and contradiction of dismissing one bullshit DSM 5 diagnosis but accepting another is not lost on me.
I haven’t read the study but Peter Gotzsche in ‘Deadly Medicines…’ states:
David Healy performed a study in 20 healthy volunteers – all with no history of depression or other mental illness – and to his big surprise two of them became suicidal when they received sertraline.(13) One of them was on her way out the door to kill herself in front of a train or a car when a phone call saved her. Both volunteers remained disturbed several months later and seriously questioned the stability of their personalities. Pfizer’s own studies in healthy volunteers had shown similar deleterious effects, but most of these data are hidden in company files.
(13). Healy D. Let Them Eat Prozac. New York: New York University Press; 2004.
Yes it’s gone. Hallelujah. In fact the whole page has changed considerably since earlier this year, not only in its content but in it’s tone.
It was condescending and dictatorial and in my experience factually incorrect in places. So much so I was moved to send them my opinion of it. It is now much more reasonable – maybe they are listening after all.
(I wish I’d copied and pasted the old text, for comparison)
It was still there, presented as fact, in relation to ‘schizophrenia’ last time I looked. I emailed them to ask ‘How dare you ?’
I did not receive a reply.
Like candy. Even offered when you don’t ask for them. I went to my GP this year to get a 3 day supply of sleeping tablets. (I know they are poison but sleep deprivation shifts your judgement – I didn’t take any in the end)
As an alternative to my request he offered me a course of anti-depressants !!
I think he was surprised by my response.
I followed the link to the article ,and from there the link to Herman Merivale’s book ‘My experiences in a lunatic asylum by a sane patient’ published in 1879. I recommend others do the same.
Having now read some sizeable chunks of his book, what strikes me is how little appears to have changed in 140 years. With updated language, many of this gentleman’s comments would not look out of place on MIA.
This for example in reference to medication – ‘They did not give me very much of it, I suppose, or I should not be alive’
That’s a worry.
It would appear the scenario as you describe it is the one the drugs companies befuddle us with each time they publish results of their trials.
What Kjetil has done is show you that the till has had $25 and the waiter has had $2 and there is therefore no missing dollar. (25+2=27)
If there was a missing dollar I’m pretty sure the drug companies would have had it anyway.
Boans, I will have a go at this for you:
You have a cigarette burn, and you now know that given the right circumstances and a little time, your body will heal itself – protect it, keep the wound clean, maybe put some antiseptic cream on it, maybe put a plaster on it. You now know that sticking a penknife in it, burning it some more, or pouring caustic soda on it is not going to help. Before you learned this, your mum probably did the first aid for you, maybe explained why, told you not to mess with it, and reassured you that it would be ok. Because it was your mum (I’m making this presumption) you believed her, you trusted her, and by not messing with it you allowed your body to heal itself. It healed like she said, and although not scientifically proven in any way, sufficiently proven for you to now believe this to be the correct course of action. The only faith involved was that your mum would be proved correct, which she obtained by reassurance.
Clearly a psychological burn is more complicated, but is the principle not the same? Give your mind the correct circumstances and it will heal itself. The placebo seems to me to be the equivalent of a trusted source (your doctor, how ironic) reassuring you it will be ok, whilst at the same time not messing with the wound. Sadly, the reason the same benefit might not be had from your doctor simply reassuring you the wound will get better on its own if you don’t mess with it is due to the general success of pharma’s marketing behemoth in convincing us we should take ‘something’ rather than nothing.
So if you practice meditation, your faith is in the self-healing power of your mind. Meditation is no more the cure than keeping the cigarette burn clean; it is a circumstance that allows the mind to heal itself. Placebo is not faith healing per se because it is not the faith that does the healing, but faith in the placebo and therefore not messing with the wound that allows healing to occur. The physiological change caused by the placebo is reassurance.
I feel your pain, we are going through something similar with my son although your situation sounds more difficult.
We have had some success with blitzing his room. We cleared it, stripped it bare, cleaned it, painted it white, put in new carpet, curtains and light, and then put the basics back in without all the crap. He now has a clean, calm space, which he appears to appreciate and he is treating it, and possibly himself, with a little more respect. He is definitely sleeping better and even bathing more. It is also a lot easier to keep on top of when he won’t do it himself (a quick tidy up when he is not in there). It isn’t the key to his complete recovery but it has certainly helped, and equally importantly, also helped the family dynamic.
It’s just a suggestion; I realise it might be impossible for you to accomplish, but if you can see a way to do it and enlist the necessary help it may be worth a try ? It will probably also make YOU feel better, to have done something positive and tangeable.
Thank you for this. So effing obvious when the maths are spelled out; the massive elephant in the maths room.
What a tragedy that going to a psychiatrist or GP and requesting to be given a placebo to aid your difficulty would be delusional.
Or would it ?
Eloquent, amusing, moving and accurate.
Surely improvement on a placebo is an emotional response, and therefore the fact that placebos tend to illicit improvement is further indication that these ‘disorders’ are an emotional issue. Of course if you give the sufferer something that makes them devoid of all emotion you may see an initial improvement. But it can’t last, because the cause remains un-addressed, and you have now added a host of adverse effects to compound the original issue.
‘The results aren’t saying what we want them to say – we need to change how we get the results.’
‘We aren’t getting enough people diagnosed – we need to broaden the diagnostic criteria.’
‘Some of our diagnoses are being challenged – we need to make up some new ones.’
‘Too many people don’t fit neatly into any particular diagnostic criteria – just label them with something and add NOS’
‘The drugs don’t work but we mustn’t admit it – call the patient ‘treatment resistant’.’
‘The drugs’ effects are intolerable but we mustn’t admit it – call the patient ‘non-compliant’.’
The name Ron is looking for is possibly ‘Lying Bastards.’
Mark. Good to hear you got off them yourself, and quickly, and before it was too late.
But I take issue with your suggestion that its up to my son. You assume adequate capacity and rationale. If he were a heroin addict should I shrug and say it’s up to him, or do my utmost to intervene on the basis that his capacity and rationale have been distorted by his addiction?
Has he been able to spend hundreds of hours reading the countless studies and articles on the consequences of taking neuroleptics? Or read the numerous accounts written by psychiatric survivors detailing their own experiences and opinions? Or has he been sitting rocking backwards and forwards wondering what his name is, incapable of reading anything, in a drug induced mental fog designed to shut him down?
At times we need help. When we do, we must hope that we have someone who knows us well and will act in our best interests and hopefully in the way that we would act if we could do it ourselves.
Of course it should be up to him, but he’s now so screwed by the system he can’t possibly do it on his own. The megalomaniac drug pushers have made it so. He was a straight A student, rational, hungry for knowledge and emotionally intelligent. If I am making a decision for him, I am making the one I believe he would make for himself had his appalling entanglement with psychiatry not currently prevented him from doing so.
Thanks Fred, fascinating info. I have my own suspicions in line with your sentiments around accumulative levels of unknown toxins.
I read about an outbreak of ‘schizophrenia’ that occurred in North Wales just over a century ago that turned out to be as a result of high levels of lead in drinking water. My son has no metal fillings (and I had mine replaced) and I can’t think of any other obvious concerns, but I am now wondering about our 30m water supply pipe from the mains – it would have originally been lead as the house was built in 1870. I’m considering digging up the garden to check if it was replaced in its entirety – yes I’m serious.
In support of the notion that coercion causes untold psychological damage I offer the following 2 personal examples:
UK. I have mentioned the first on MIA before but it is worth mentioning again – my son was first detained under the Mental Health Act, against his wishes and the wishes of his family, by a social worker and a psychiatrist who had never previously met him. A week later, at a hearing arranged by his parents to request his release, his own contribution to the hearing was ‘If you keep me here I will kill myself, if I can go home then I wont’. He had not previously voiced any suicidal ideation.
The second involves his recent return to the same psych unit to voluntarily visit a friend who had been admitted. My son had just been on holiday, his previously constant ‘voices’ had not been in evidence for over a week, he was calm, controlled and rational, and obviously felt able to visit. He was mistaken. Following the visit his voices returned with a vengeance, he was agitated, visibly distressed, and so dissociated he became ‘Dave’, an apparently dangerous and violent man (according to his heated conversations with voices) who was not to be messed with. It took 2 days of constant, calm reassurance to get him anywhere near as well as he was prior to the visit. A week later the voices that had been absent for over a week prior to the visit are still with us.
I’ve always said that Mark. My son is regularly convinced (his view of reality varies) that in his darkest hour he was put in prison and not the ‘hospital’ . The fact that he was dragged there in handcuffs via the back of a Police van can’t help – not because he had done anything wrong or had threatened to, but simply because he refused to be ‘hospitalised’ voluntarily.
I have assured him many times that he did not go to prison as he would probably have found that experience less traumatic.
In ‘hospital’, despite the fact that there was a gym and a table tennis table (and a music room), there rarely seemed to be staff available to facilitate it. They were all busy supervising the hourly (almost compulsory) smoking procession.
Several times my daily visits were interrupted with a member of staff offering my son a smoking opportunity. They were never interrupted with the offer of excercise. He didn’t smoke before he was incarcerated in that hell-hole. He certainly did when i got him out.
Boans, I did go to the police. I had an informal meeting with an inspector (relative of a friend) where I outlined a dozen or so medical papers – many of which were found via MIA – that in my opinion proved that without good reason my son was being subjected to physical and psychological harm at the hands of the NHS, and I therefore wanted to press charges.
The response was this: the problem would be that the ‘experts’ the police would go to for opinion were the very people I was accusing of perpetrating the crime.
I also went to a firm of solicitors renowned for negligence cases. Their response was that they would have problems finding sufficiently qualified ‘experts’ prepared to lambast their colleagues in court.
As mentioned, a fantastic system protecting itself from all angles.
Shocking report, but sadly I can’t say I’m surprised.
What happens in the UK is that if someone chooses to exercise the legal right provided to them by the Mental Health Act, social services spend a whole wad of public money to get that legal right removed. It seems there are no absolute rights – where it appears the law provides some, the psychiatric system seems able to overrule the law.
It’s a fantastic system designed to give itself absolute power, to blame the patient when anything goes wrong or worsens, and ensures there is no route for its victims to pursue redress.
There’s a very good reason for slow: withdrawal.
I agree that any continuation is continuing the damage but have you been on them for any length of time and then just stopped taking them ?
I am trying to get my son off this toxic rubbish. Some NHS idiot put him on these meds and then stopped them suddenly and my son went beserk with a host of brand new symptoms which got him hospitalised on more meds. Eventually, much later, back in my care after 6 attempts in court, we are making small reductions every few weeks, but even then for the week or two after a reduction we have problems, which then subside.
The human body fights any external interference in order to maintain its own ‘balance’. If it’s been fighting the effects of these toxins for any length of time in order to try and maintain function then it is apparent the body (and mind) needs time to realise it can stop fighting and re-adjust.
Psychiatry’s disregard for this fact has cost my son several years of life and unimaginable (to non MIA readers) trauma.
You may have been able to turn off your (flight or) fight instincts, but reading your piece has taken me on an emotional rollercoaster that has very much turned mine on.
Dear Chrys and Daniel,
I hope you have the strength to keep fighting for redress. The more of us that do so the more these idiots might consider the harm they do to those already in their darkest hour.
I guess you are familiar with Gert Postel. Brilliant – so full of BS that psychiatry welcomed him with open arms.
On the other hand, would he have been the ‘someone reasonable’ that you would hope to find ?
My own conclusions based on the observation of my son’s experiences mirror the content of your article. I don’t know whether your conclusions are drawn in part from in-depth personal knowledge of someone close to you but mine are, and I would say without doubt that your opinions are accurate and correct.
Unfortunately, what we have experienced from the NHS over the last 3 and a half years is so far removed from everything you conclude or suggest it’s a wonder anyone gets out alive. Had we (responsible and loving parents in support of a traumatised son) not become embroiled in this dishonest and deluded industry and experienced the incompetence and/or corruption and denial for ourselves, we would have considered our own account of the last 3 and a half years at the hands of NHS psychiatry to be a work of fiction.
Our son demonstrates ‘the protective response of a distressed or desperate psyche’ – very much in line with your article. This is not ‘illness’ to be diagnosed, but emotional reaction to event, events or circumstance.
But by diagnosing ‘illness’ or ‘disorder’, psychiatry can claim to provide ‘treatment’. And as ‘treatment’ turns out to be drug-centric and entirely symptomatic I have concluded ‘diagnosis’ is simply a manufactured justification to ‘medicate’ that at its very best can only be expectant and is far more likely to be iatrogenic. In all cases it compounds the distress and desperation that lead to the protective response in the first place – at the very least by rendering the hapless victim incapable of the clarity of thought required to address the original cause.
God help anyone who has been traumatised and thinks NHS psychiatry may be the answer. We will never come to terms with the fact that in Britain, in the 21st century, this is the state of affairs. Our dog gets better treatment and appears to have more rights.
Someone Else mentioned ‘blame the patient’. Here is my experience –
Should ‘treatment’ (a drug) prove ineffective, the blame does not lie with the treatment, but with the patient: the patient is ‘treatment resistant’. If the negative effects of a drug are intolerable, it is not the drug that has failed but the patient: the patient is ‘non-compliant’. A drug is never simply useless and harmful, instead a spurious shift of blame is alleged to explain it’s uselessness and harmfulness: the patient must be a co-morbid drug user or be doing something else so bizarre it interferes with the action of the marvellous medicine. Should the patient’s symptoms worsen on the drug or the patient develops new symptoms it is not the fault of the drug, but the fault of the patient’s underlying pathology.
Perhaps worst of all is the claim that the mystery ‘illness’ is likely to lead to aggression or violence in a patient with no record of either. On which basis the patient loses their personal liberty and is forcibly medicated against their wishes and the wishes of their family. If that doesn’t succeed in making the previously gentle and placid patient aggressive and violent then continuation on a high dose of neuroleptic or SSRIs eventually will, falsely validating the original bullshit allegation and outrageous iatrogenic course of action.
Oh, and any violent outburst so occurring and blamed on the original ‘mystery’ pathology – ‘we told you so’ – also happened because the patient was either not taking enough meds or must have stopped taking them.
I love how in the world of psychiatry “I can see through your self-important lies, misrepresentations and false prognoses, and through objective observation and careful assessment of my own experience have drawn an independent and carefully considered conclusion that your meds are innefective, unhelpful and damaging” equals “Lack of insight”
Just read it and almost wish I hadn’t. Jesus.
I believe that my son’s difficulties began as a result of either a succession of minor traumas or a suspected but as yet undisclosed major trauma, or both.
What I know for certain is that his subsequent involvement with mental health services in the UK has not only compounded his original trauma but stacked so many layers of new ones on top he can’t yet get at the original.
No police record, no history of violence, no history of attempted harm to self or others, yet dragged from his own home in handcuffs by 4 police officers, bundled into a van, locked up, and drugged against his and his family’s wishes.
Oh, and then accused of being hostile towards staff. But of course in the mystical world of psychiatry, despite the fact that you have never been hostile in your life, this means you must also have a mood disorder and given more drugs.
Don’t just imprison them, treat them to their own medicine.
Re attacking stage: We already have – anyone who challenges the system is attacked.
Anyone who challenges the system in an intelligent, evidence based manner is attacked with all guns blazing. The system spent over £30k trying to remove the embarrasing irritation that was me trying to protect my son. (Of course they won’t spend it on psychological therapies) The lies that appeared in that assault were incredible. Three firms of lawyers and two barristers armed with a pack of lies to try and dislodge a parent who has simply decided ‘no more meds because they clearly don’t work’. There were between 8 and 10 people in the coutroom on three occasions and the only ones not on the public payroll were my wife and me representing ourselves.
Why ?? To protect the lies would seem the only explanation.
Yup, coercive lies here as well. Two different NHS consultant psychiatrists presented me with the chemical imbalance theory within the last 3 years. One of them even blathered the insulin analogy. He is not a stupid man, he is well published and I have read most of his papers. He has made two statements to me that he has demonstrated he knows not to be true. This is dishonest. Under such potentially disastrous circumstances ‘white lies’ for the sake of convenience are not only unjustifiably dishonest, they amount to gross misconduct: deliberately misinform to obtain or maintain consent ? Why ? Running scared for the validity of his actions ?
Worse still, I have heard one or two of his other patients proudly broadcast that they have a chemical imbalance that is corrected by taking his lovely meds. Wonder where they got that from ? Poor sods.
Barrab. You’re right, and you hit the nail on the head in your first paragraph.
We now have our son out of the system after a 2year fight, and he is at home with his parents, trying to gradually reduce his meds; it is a nightmare for all of us but at least now we have hope. Neither we, nor psychiatry before us, have a clue what we are doing. The difference is we admit it.
Blimey, I hadn’t thought of that. I certainly don’t like the prospect of some of his delusions being prophetic, but maybe I should consider them more carefully, just in case. I havn’t heard him say anything about a nice house on the beach and lots of pretty girls. Here’s hoping … (For him – I’m past it!)
PS In the UK the donations plate gets passed round every January 31st. They prefer to call it a tax return.
Yes Erin, I’m afraid they are. Blind faith. Belief in a doctrine based on conviction rather than proof. Psychiatry is a church and antipsychotics are the existence of god. If you accept that god exists you can join in whatever other benefits membership of the church may offer. If you don’t believe and sneak away quietly you are banished to a life in the wilderness. Well done you. If you are stupid enough to challenge ‘his’ existence you are subjected to public flogging and trial by ordeal and your children will be abused by the clergy. The only reason survivors of flogging and trial by ordeal are not burned at the stake is that it would attract too much attention and the church would be found out. If your children die at the hands of the clergy its because you were a non believer.
UK – My son was sectioned for ‘assessment’ by a social worker who had never previously met him, with the support of a psychiatrist who had also never met him, and my objection to this course of action was overruled. He had never been in any trouble, or aggressive, and at that point he had never voiced suicidal ideation. His admission may have been the most traumatic thing he had ever experienced: he had just turned 18, was already frightened and confused by his disordered thoughts, which included the paranoid idea of a secret language, and was put in a room with someone permanently standing in his doorway who’s first language was not English. He begged not to be left there. The room was bare and shabby, the pillow smelt and the mattress smelt of someone else’s urine. The adults in the corridor beyond the open door were variously loud, aggressive, confused, or all three and an horrendous alarm sounded regularly. He was scared to death and concluded he could only be there because we didn’t want him. He became terribly depressed and it was clear the environment was doing him far more harm than good. In 6 days he was never even seen by a consultant. We succeeded in getting a multi-disciplinary meeting on the 7th day of his detention and he, my wife and I appealed to the 8 or so people present for his return home. They agreed. My son’s not necessarily helpful contribution to the meeting was ‘If you keep me here I will kill myself, if I can go home then I won’t’.
Our friend’s nephew was not so ‘lucky’. He experienced a sudden change in his usual way of thinking, also at 18, and was presented by his parents to a psychiatrist, who told him he had schizophrenia and would be on medication for the rest of his life. On his return home he killed himself.
Obviously it turned out it was his ‘disorder’ that caused him to do it. Not being given a BS stigmatising diagnosis with a dishonest dead-end prognosis.
Steven, thank you for trying to help me understand.
Oh, so the trials Glaxo published show the drugs might work, but the trials they didn’t publish show the drugs don’t work ?
But why are those responsible not accountable ? Imagine if the penalty for getting caught commiting any crime was that the perpetrator simply had to promise not to do it again.
The quality and depth of some of the subsequent dialogue demonstrates why a piece with which many MIA members (politely!) disagree can be a more valuable post than a piece that raises a resounding chorus of ‘here here’.
Why was I taught that crime doesn’t pay ?
Someone Else, thanks for your comments – we are treading very carefully with dose reduction and are prepared for a bumpy ride. It is reassuring to read that you don’t feel you suffered any permanent damage (psychological damage excepted !).
Sadly, we are all too aware of withdrawal syndromes – after a year of useless, unhelpful neuroleptics that made my son physically ill and more psychologically troubled than he was before he took them, some genius put him on clozapine. It took him 2 months to titrate to a dose of 300mg per day which he remained on for a month, but he could not tolerate it. (Thank God)So what did the genius do ? Dropped him from 300mg per day to zero immediately. In a day. The consequence was that 4 weeks later he went beserk, and was massively unwell and uncontrollable, unlike anything he had been before, with a host of new symptoms he never previously had. That’s when the 2-year fight began to get him away from these idiots.
Doesn’t psychiatry do well ? (I bet it’s not down in his notes as a total fk up due to clozapine withdrawal.)
‘Patients and their families across the world are in open revolt against psychiatry.’
And if they are not, they will be the moment they realise what is happening.
Keep fighting. There IS hope because you CAN win. I have aged 10 years in the last 2 as a result of fighting to get my son out of the system. But at our 6th attempt in a court of one form or another we won. He is free. Not at all well, because there is three and a half years of damage to try and reverse, but free.
You need 1. an expert with letters after his name who agrees with you, 2. a lawyer who gives a damn, and 3. the determination to beat the deluded dishonest drug pushers.
Frequent visits to MIA will remind you that you are right, and give you the energy for requirement number 3. Get looking for the first two.
Well Mr Bhugra, NHS psychiatry had my son for three and a half years, and demonstrated its very clear sense of direction – ignore the wishes of the patient and his family and coerce into useless, damaging, debilitating neuroleptics. The view from the cliff is also very clear – the kind of psychiatry we have experienced should break into a trot and run right off.
Tremendous info Copy Cat.
Further translation –
Anti-psychotic medications and mood stabilizers have been proven to be effective in shutting down and shutting up lively children, treating defiance by removing the will to live and causing a cavalcade of appalling effects, er sorry, definitely not causing any adverse effects. No sir. Any new problems are obviously symptoms of the child’s mystery disorder NOS and must be treated with more meds and stabilizers.
Actually, it’s quite an interesting idea; perhaps the conversation in the Janssen Pharmaceuticals boardroom went like this
‘How are we going to get these angry, energetic boys to calm down a bit ?’
‘I know, let’s give them breasts – I bet that will shut them up’
The creature that buries its head in the sand is the ostrich. The creatures who bury their heads so far up their own arses the only thing they can see is their own shit are these child psychiatrists.
Nope, it’s at least a two-man fan club stretching across the Atlantic- I’m in.
What ? Why ? How ? In fact, WTF ???
Someone screwed these kids’ lives up – often accidentally, which is why they are in foster care, then the people who are supposed to be rescuing these most vulnerable children in society from their predicament screw them up completely – only this time deliberately. What world is this ?
Put the perpetrators on neuroleptics, it might stop them doing any more damage. On the other hand, it might make them waltz into the nearest childrens’ home with a semi-automatic.
Where would you get a sufficient sample of people diagnosed with schizophrenia who were not medicated? To acquire the diagnosis the person must have had contact with psychiatry, and in my experience the consequence of contact with psychiatry that results in a diagnosis of schizophrenia is inevitably medication, by consent or otherwise. If such a person is not medicated it must mean they have managed to sever all contact with psychiatry and therefore would not be available or willing to take part in studies.
Donna has kindly provided lots of references; here are three extracts that report grey and white brain matter shrinkage (cognitive impairment?) is both drug-related and dose-dependent.
Konopaske / Dorph-Petersen et al exposed three groups of macaque monkeys to oral haloperidol, olanzapine or sham for a 17-27 month period and published this:
‘The resulting plasma drug levels were comparable to those seen in subjects with schizophrenia treated with these medications. After the exposure, we observed an 8-11% reduction in mean fresh brain weights as well as left cerebrum fresh weights and volumes in both drug-treated groups compared to sham animals. The differences were observed across all major brain regions (frontal, parietal, temporal, occipital, and cerebellum), but appeared most robust in the frontal and parietal regions. Stereological analysis of the parietal region using Cavalieri’s principle revealed similar volume reductions in both gray and white matter. In conclusion, chronic exposure of non-human primates to antipsychotics was associated with reduced brain volume.’
Radua et al concluded this in 2012 after their multi-modal meta-analysis:
‘The analysis identified conjoint structural and functional differences in the insula/superior temporal gyrus and the medial frontal/anterior cingulate cortex bilaterally. In these regions, large and robust decreases in grey matter volume were found with either reduced or enhanced activation. Meta-regression analyses indicated that grey matter volume in the anterior cingulate and left insular clusters was influenced by exposure to antipsychotics: patients receiving medication were more likely to show structural abnormalities in these regions.’
And what Nancy Andreasen (Ho et al) reported in 2011 is that long-term use of neuroleptics:
“correlated with smaller brain tissue volumes and larger cerebrospinal fluid volumes. Greater intensity of antipsychotic treatment was associated with indicators of generalized and specific brain tissue reduction after controlling for effects of the other 3 predictors. More antipsychotic treatment was associated with smaller gray matter volumes. Progressive decrement in white matter volume was most evident among patients who received more antipsychotic treatment. Illness severity had relatively modest correlations with tissue volume reduction, and alcohol/illicit drug misuse had no significant associations when effects of the other variables were adjusted.”
Food for thought.
In honour of Herman Melville perhaps MIA could begin a campaign to have the following diagnosis included in the DSM:
‘Somehow Dreadfully Cracked About the Head Not Otherwise Specified.’ – SCANS for short.
Strange how ‘Total Headcase NOS’ sounds like he/she might be good fun and someone you would want to spend time with, whereas ‘Schizophrenic’ sounds like he/she might be problematic and someone to be avoided.
I love a good diagnosis.
I’m sure you’re right, but how has he come by that belief ? If he has arrived at his belief by seeing or hearing something, or a succession of things, that nobody else is, or rather that havn’t occurred, then hasn’t his delusion come about by visual or auditory hallucination ?
Brilliant article. But hang on…
The RCP welcomes the views of patients and carers ???
That’s funny, because my experience (in the UK) has been that if the patient’s view is that he no longer wishes to take toxic, debilitating medication that for some considerable time has proved itself useless and completely unhelpful, his view is ignored and dismissed as the incoherent ramblings of someone without the capacity to make such decisions. And should the carer step in to support the wishes of the patient, All Hell breaks loose, with three firms of solicitors and two barristers at the fore, funded by the bottomless pit of public money, until the carer has been successfully portrayed as a bohemian half-wit and displaced, and the patient has been incarcerated so that the opposite of his view can be enforced. Very democratic.
Bring on the tide. Nay, tsunami.
At a recent meeting, my son’s consultant was concerned that I might be recording the meeting (1 – paranoid delusion), and also declared that the government has appointed him to be in charge of my son, which is incorrect, he has appointed himself (2 – grandiose delusion); the government has only misguidedly provided him with the power to coerce.
He also declared that my son has ‘improved’ whilst on neuroleptics; he hasn’t (3 – belief that bears little or no relation to reality – visual and/or auditory hallucination), and his insistence on subjecting my son to a regime from which he has consistently demonstrated he derives no benefit and therefore from which he will continue to derive no benefit illustrates a complete lack of motivation to pursue meaningful goals (4 – Avolition).
According to the DSM, given that he has held beliefs 2 and 3 for over a month, symptoms 1 to 4 provide the diagnostic criteria for an unequivocal diagnosis of paranoid schizophrenia.
An NHS psychiatrist reduce a dose of neuroleptic because it isn’t helping or is making matters worse ? Unheard of. They don’t dare. I discover one who did was hauled in front of the GMC.
I have actually been in a meeting where a dose increase was proposed on the grounds that there had been ‘improvement’ on a particular medication. But when it became apparent during the meeting that there had been no improvement on the medication but deterioration, wait for it …a dose increase was proposed.
And I’m glad to hear you managed to free your son. I just have too. Thank God. And thank MIA for giving me both information and the determination to keep going, and also thanks DR Moncrieff for your continued work – several references to it were made in our (eventually) successful attempt to remove my son from his Coerced Toxins Outrage.
And to any other parents of victims caught in the same catastrophic mess – no matter how exhausted you become do not give up, you CAN win.
Correction – looking after my son and ATTEMPTING to provide his every need.
Bob W, to promote dialogue as a vehicle for change is bang on. But what are we trying to change, the opinion of psychiatric survivors? Not a chance; their point of view is firmly cemented in personal experience. The opinions of psychiatrists like Dr Sandy, who do not see drug-centricity as the Holy Grail and to hell with anything else? No, they are already open minded, humane and searching for answers. We are trying to change the opinion and behaviour of the psychiatry that the majority of us have had the misfortune of being coerced by; the psychiatry that blindly and unsuccessfully attempts to medicalise human emotion and in so doing compounds the original difficulty beyond recognition. I fully support Daniel’s post: although written from an American perspective, it reads like an uncanny checklist to my son’s experience at the hands of NHS psychiatry. I have heard almost every phrase that Daniel has put in quotation marks. Some of them are word perfect.
Against this backdrop, psychiatry-bashing of the kind Daniel has entertained us with here has another purpose besides promoting dialogue – a rallying call: I am tired, very tired, and almost broke, from looking after my son and providing his every need, whilst at the same time trying to rescue him from a blinkered, damaging system that purportedly has no funds to provide proper care or intense, non-drug treatments, but has a bottomless pit of public funds to fight you back should you challenge its coercion. Daniel’s piece is a reminder of why I must continue fighting, that others have suffered a similar experience and escaped, and encourages me to keep going against the odds.
Boans, CTOs are a marvellous invention:
‘You must now leave hospital because you are costing us a fortune and if you stay here any longer you will also make us look bad for not making you better, and anyway we need the bed for our next victim. But as you will be a danger to yourself or others, despite never having been so before, you can only go home if you agree to this CTO. The terms of which are that we will drug you to within an inch of your life for as long as we can afford it, or until you manage to get the CTO removed. But by the time you try to get it removed you will be so drugged up you will be worse than you are now and will have lost the clarity of thought required to challenge the CTO.’
‘Stay in hospital and be drugged, or go home and be drugged, the choice is yours, and it’s all about patient choice isn’t it ?’
Ever try to get a CTO removed ? It appears judges are so far out of their depth they don’t have the cahunas to do anything at all.
Interesting piece. I’m in the UK and we do seem a little further along the CBT road than you are in the US but the road is steep, narrow, full of potholes due to lack of funding, and hidden by a dense undergrowth of neuroleptics.
You brought up something my observations have absolutely convinced me of but for which I haven’t been able to find an explanation – atypical neuroleptics making voices worse, or creating them where there were none.
My son had suffered some confusion, delusions and paranoia, but no voices (that anyone was aware of or that he reported) until he was dropped from his third neuroleptic and started on a fourth – despite being entirely symptom-free at the time. (Feel free to wonder why someone who is symptom-free is given a neuroleptic.) Within ten days he was arguing with at least two different voices at high volume.
Did Doug Turkington give you any references to papers identifying the issue? I would like to beat the perpetrator around the head with them.
Dr Leitner, many thanks for the info.
Stephen, also thanks for the pointer, and what a shocking story – you really are a survivor.
Rossa, no I don’t accept any diagnosis as credible that relies on a list of symptoms in preference to determining a cause. Only when you have established a cause can you have a credible diagnosis. My son demonstrates ‘the protective response of a distressed or desperate psyche’, and I would posit that this is the case in nearly everyone with a mental health issue. Emotional response is not ‘illness’ but reaction to event or circumstance: distress following a trauma or series of traumas. My son has clearly demonstrated he does not have some mystery chemical imbalance, although I worry that he does now as a result of the drugs: the small, small print of his present drug manufacturers’ own literature disguises the fact that it admits ‘The mechanism of action is unknown’. But by claiming schizophrenia, and therefore chemical imbalance, psychiatry is able to claim ‘illness’, and by claiming identified illness, it can claim to provide treatment which is active, causal, conservative, curative, empiric, palliative, prophylactic and rational. We discover to our horror that psychiatry actually provides none of the above, but confines itself to providing an entirely drug-centric symptomatic treatment that at best is expectant, at worst iatrogenic, and in all cases compounds the distress and desperation that lead to the protective response in the first place.
I also believe nearly all mental health issues are a manifestation of post traumatic stress. And you are right, that particular diagnosis seems to be reserved for when the cause of the trauma is obvious. The importance of substituting the less ridiculous ‘diagnosis’ of PTSD in my son’s case is that the recommended treatment regime for PTSD in the UK is not a pile of ineffective and damaging neuroleptics, but a pile of psychological therapies, focusing on helping the mind rather than focusing on crippling the brain.
Good news on your son, keep going !
Dear Dr Leitner,
Full of truth, but I must correct you on the reality of one of your points in your penultimate paragraph:
My son is currently a ‘captive’ of the NHS, forcibly medicated in the community against his and his family’s wishes, on the spurious basis that he will pose some kind of risk to himself if he is not. I assure you that the treatment-of-choice for “schizophrenia” in the United Kingdom is still neuroleptic drugs. NICE clinical guidelines may advocate the offer of psychological therapies, but not only are they not offered, request for their provision under the guidelines is met with ‘they are only guidelines’ and declined on the grounds of unavailability. Moreover, when the patient’s family consequently sources those services in the private sector, funding for their provision is denied. (But funding is available for two firms of solicitors and two barristers to make three attempts at Nearest Relative displacement when the NR realises the neuroleptics are completely ineffective and supports the patient’s wish to stop taking the harmful medication from which he has derived no benefit.)
I wasn’t aware of that jaw-dropping 65% figure in your last paragraph but could you (or anyone else??) point me in the direction of the source documents that support that figure? Not because I doubt for a second the accuracy of your information, but because from my son’s perspective you have hit a very large nail directly on the head:
During his initial psychotic episode, my 17-year-old son made a confused attempt to report sexual abuse, which was dismissed by the attending psychiatrist as delusional. In consequence he has been given a succession of 6 neuroleptics over 3 years, during which time his initial positive symptoms have gradually worsened and been joined by new ones, he has developed significant negative symptoms where there were none, and his cognitive function has deteriorated from straight A-grades to the point where he is now barely able to relate anything at all. My insistence that his original difficulty was as a result of trauma is ignored, and my suggestion that he therefore has a form of PTSD, and not schizophrenia, is denied.
I would like to slap the 65% source documents firmly on the desk of his current consultant, they would be yet another useful arrow in my quiver.
Let me clarify that further:
Although Janssen-Cilag’s own literature on the toxic rubbish that my son has forcibly injected into him every fortnight against his wishes and the wishes of his family hypothesises at length over what their product MAY do, it actually admits, in the small, small, print:
‘THE MECHANISM OF ACTION IS UNKNOWN’
Can you get your breath ? How in God’s name is that morally or legally acceptable ?
On the other hand, if anyone does suffer from this terrible disability, may I recommend contact with the psychiatric industry. I guarantee it will reverse any underestimation you may have of the likelihood of future misfortune
This is excellent news. On the basis that taking neuroleptics following a trauma has given my son a host of psychotic symptoms he did not have before taking them – the very symptoms the neuroleptics purport to ‘cure’ – I can’t wait for the introduction of the medication which will ‘cure’ this appalling and debilitating ‘pervasive tendency of healthy individuals to underestimate their likelihood of future misfortune’.
I will take it by the bucketload.
Surely rather than have the difficulty of choosing one (or several) of the multitude of child disorders now available it would be far more cost effective to have done with all the current nonsense and simply introduce BCD (Being a Child Disorder). Think of the ease and speed of diagnosis, the endless supply of new patients and the profits once a suitably toxic and innefective drug is brought to market. It would be a double whammy by dealing with the pensions crisis at the same time – no-one would live long enough to draw one.
I wait with eager anticipation for my own disorder to be identified – DNPD. Deck the Nearest Psychiatrist Disorder.
They can have my vote too Copy_cat. You think Greg Panico and his colleagues have kids ? Do you think they give their own kids Risperdal ? Or any other antipsychotic ? They wouldn’t dare.
Thanks for your positive message Stephen. I don’t know what to do about it either, other than exactly what you suggest:
Spread the word – if you think you can manage without the system, then manage without the system. If you don’t think you can manage without the system, find the strength or support to manage without the system.
Stephen, it occurred to me that the only reason this story made mainstream news was because the charges were dropped. And the reason the charges were dropped was because of a procedural error. So if the paperwork had been correct this mother’s efforts would have failed – the story needed a gunshot, an error by the court system, and the mother’s charges dropped for it to be considered of sufficient public interest for it to make the news. I also think it helped that it was a mother and not a father.
Parents ARE standing up to psychiatrists, drug companies, and supposed Child Protective Services, every day and everywhere. But no one can support them because if the CPS and social services get their paperwork right the parent’s efforts fail. If the parent’s level of resistance is sufficient the parent is charged with some kind of unlawfulness and probably convicted, and no one hears about it because it’s just another innocent child detained and drugged, just another family shattered and just another day in the office.
Don’t applaud this woman – give her a standing ovation !! Not only does it appear she may ultimately succeed in protecting her daughter from the local drug-pushers, she has made the news. If all we parents who attempted (and continue to attempt) the former had succeeded in achieving the latter, we might be getting somewhere.
I have so far failed on both counts. The consequence of my unwittingly asking for psychiatric assistance with a distressed but harmless adolescent, and initially and unknowingly supporting ‘treatment’ with neuroleptics, but subsequently refusing further neuroleptics based on my observations of their ineffectiveness and harmfulness, was that the police entered our home on six consecutive days, looking for our by then terrified adolescent. Not because he had committed any crime, but because he was distressed and confused, and so must be dragged off in handcuffs, locked up and forcibly drugged against his and his family’s wishes. (The NHS prefer to call this ‘Sectioned under the MHA’)
This and our continuing saga of law-enforced ignoring and overruling of sensitive and objective parental observation and opinion has so profoundly affected every acquaintance of mine who is a parent themselves, none of them would now dare take their child anywhere near a psychiatry department. I just wish I had made the acquaintance of more parents.
I like to think that under the circumstances it is fortunate I am unable to buy a gun in Walmart in the UK. But on the other hand at least more people might have got to find out what actually goes on.
Well-done Maryanne Godboldo.