Category Archives: Health

Abuse, Health, Schizophrenia

Does “January” Have Schizophrenia or Is it Her Family That is Disturbed?

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I first saw videos of January on Youtube years ago, and I was appalled by the inappropriate nature of taping your supposedly disturbed child. I was also skeptical. I felt deeply that the parents had decided to label and encourage Jani to behave/answer questions in “schizophrenic” ways in order to garner publicity. Sorry, but those were my feelings at the time and they are still my feelings though I have not been able to stomach “keeping up with the story” over the years. Frankly, I would not be surprised if this case did not rise to a matter of Munchausen’s by Proxy, though no one is saying any such thing (of course not!)…

 

This article is an important OPEN LETTER  that I just found at BEYOND MEDS:

https://beyondmeds.com/2009/10/18/an-open-letter-to-oprah-regarding-jani-the-seven-yr-old-schizophrenic/

FROM MAD IN AMERICA dot com – January 21,  2013 (I couldn’t find any sharing buttons that would allow me to reblog this but the direct link can be found below)

The Hearing Voices Movement: In Response to a Father – ‘My Daughter, the Schizophrenic’

Jacqui Dillon

January 21, 2013

There was a heart-breaking and disturbing story in this weekend’s Guardian newspaper entitled ‘My Daughter, the Schizophrenic’, (1) which featured edited extracts from a book written by the father of a child called Jani. He describes how Jani is admitted into a psychiatric hospital when she is 5, diagnosed with schizophrenia when she is 6 and by the time she is 7, she has been put on a potent cocktail of psychotropic medications:

”Jani is on three medications: Clozapine, lithium and Thorazine (known in the UK as Largactil). This combination has been the most successful. Are her hallucinations completely gone? No, but as she will tell us, they are not bothering her. It’s like having the TV on in the background, volume turned down, while you’re doing something, and every so often you look up at the screen to see what 400 the cat and other hallucinations are doing. They remain on Jani’s periphery, but she can still function in our common reality.”(2)

This harrowing description exemplifies the worst excesses of responding to a deeply troubled child’s distress as if it were a pathological illness, with the full psychiatric arsenal. What ensues can only be described as an account of psychiatric, human rights abuse.

If only Jani and her family were offered alternative kinds of help such as that developed by Voice Collective, (3) a London-wide project set up to support children and young people who hear, see and sense things others don’t. Voice Collective works with children, young people & families, and with professionals and organisations offering a whole range of services including peer support groups, so young people can meet with other young people with similar experiences, creative workshops, 1-2-1 support around making sense of voices and finding coping strategies, an online support forum. Voice Collective also offers a range of support services to families as well as supporting schools, social services, child and adolescent mental health services and other youth agencies to work with children & young people who have these experiences.

As one parent who has been supported by Voice Collective said:

‘You have brought us ‘normality’ within these experiences. You have taught us that with the appropriate support young people can lead happy and successful lives. You recognise the love we have for our children and have taught us how to support them”. – (Mother of a 12 year old)

How different things could be for Jani, her family and countless other children and families around the world if there were greater awareness that such humane and healing alternatives exist; approaches which help without doing more harm. (continued below the break)

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(Questions, comments and/or reflections are welcome on this website or via Twitter @JacquiDillon
Jacqui Dillon’s website: http://www.jacquidillon.org
  1. http://www.guardian.co.uk/society/2013/jan/19/my-daughter-the-schizophrenic
  2. January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her, by Michael Schofield, published on 1 February by Hardie Grant Books.
  3. http://www.voicecollective.co.uk/)
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Jani and her family originally appeared on the Oprah show in 2009. Many of us within the Hearing Voices Movement were so saddened and disturbed by Jani’s treatment that we wrote an open letter to Oprah Winfrey. Here is the open letter from INTERVOICE – the International Network for Training, Education and Research into Hearing Voices – an international organisation dedicated to spreading positive and hopeful messages about the experience of hearing voices across the world, reprinted again.

Dear Oprah,

We are writing in response to your programme about “The 7-Year-Old Schizophrenic”, which concerned Jani, a child who hears voices, which was broadcast on the 6th October 2009. We hope to correct the pessimistic picture offered by the mental health professionals featured in your programme, and in the accompanying article on your website. What upset us most and moved us to write to you, is that parents will have been left with the impression that they are powerless to help their children if they hear voices. We are also concerned that the programme gave the impression that children with voices must be treated with medication. We note that the medications mentioned in your programme all have very serious side effects. (For example, antipsychotics such as Haldol cause neuronal loss, block the dopamine pathways in the brain required to processes rewarding stimuli, and carry a high risk of neurological and metabolic side effects such as Parkinsonianism and diabetes. Their effects on the developing brain are largely unknown and, in our view, they should only be given to children as a treatment as absolutely last resort.)

We have been researching and working with adults and children like Jani for the last twenty years, and our work has led us to very different conclusions from those reached by the mental health professionals on your programme. One of our founding members, Dr. Sandra Escher from the Netherlands, has spent the last fifteen years talking to children who hear voices, and to their parents and carers. This work is the most detailed and thorough investigation of children who hear voices carried out to date [1, 2]. The most important findings from recent research on hearing voices are as follows:

Prevalence of Voice Hearing in Adults and Children

Recent large-scale population (epidemiological) studies have shown that about 4-10 % of the adult population hear voices at some time in their lives [3-5]. Only about a third seek assistance from mental health services. Amongst children, the proportion hearing voices may be even higher [6] and, again, only a minority are referred for treatment. Hence, it is wrong to assume that voice hearing is always a pathological condition requiring treatment.

Psychological Mechanisms

Everyone has an inner voice. Psychologists call this phenomenon ‘inner speech’ and it is an important mechanism that we use to regulate our own behaviour (plan what we want to do, direct our own actions). Child psychologists have long understood that this ability begins to develop at about 2-years of age [7, 8]. Hearing voices seems to reflect some kind of differentiation in the mind’s ability to tell the difference between inner speech and the heard speech of other people [9, 10].

Link to Trauma

A common theme in research with both adults and children is the relationship between hearing voices and traumatic experiences. In adults, around 75% begin to hear voices in relationship to a trauma or situations that make them feel powerless [11-13], for example the death of a loved one, divorce, losing a job, failing an exam, or longer lasting traumas such as physical, emotional or sexual abuse. The role of trauma was identified in 85% of the children we have studied, for example being bullied by peers or teachers, or being unable to perform to the required level at school, or being admitted to a hospital because of a physical illness. In short, our research has shown that hearing voices is usually a reaction to a situation or a problem that the child is struggling to cope with.

Voices have a meaning. A related and equally striking finding is that the voices often refer to the problem that troubles the child, but in an elliptical manner. To take just one example from the children studied by Sandra Escher:

The voices told an 8-year-old boy to blind himself. This frightened his mother. But when we discussed whether there was something in the life of the boy he could not face, she understood the voices’ message. The boy could not cope with his parents’ problematic marriage. He did not want to see it.

We wonder whether anyone has attempted to establish why, in Jani’s case, the rat is called “Wednesday”, why the girl is called “24 Hours”, and why is the cat called “400″? What do these mean for her? Why does Jani want people to call her “Blue-Eyed Tree Frog” and “Jani Firefly”?

Good Outcomes Without Treatment

Recently, Sandra Escher conducted a three-year follow up study of eighty children who heard voices, aged between 8 and 19 [1]. Half received mental health care but the other half were not given any specialist care at all. The children were interviewed four times, at yearly intervals. By the end of the research period 60% of the children reported that their voices had disappeared. Very often, this was because the triggering problems were dealt with or because the child’s situation changed – for example, following a change of schools.

Helping Children Who Hear Voices: Advice to Parents

It is important to appreciate that the desire to make voices disappear, although usually the goal of the mental health care services, is not necessarily in the best interests of children. Some children do not want to lose their voices. If children can find within themselves the resources to cope with their voices, they can begin to lead happier and more balanced lives.

The most important element in this process is support from the family. Unfortunately, we have found that mental health services often fail to have a positive effect on children’s voices, because they foster fear rather than coping. However, we have found that referral to a psychotherapist who is prepared to discuss the meaning of voices is often helpful.

It is important that parents do not assume that hearing voices is a terrible disaster but instead regard it as a signal that something is troubling their child. If parents assume that voices are a symptom of an illness, and are afraid of them, the child will naturally pick up on this feeling. This can lead to a self-defeating cycle in which the child becomes fearful and obsessed by the voices.

We would like to offer this 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices:

1. Try not to over react. Although it is understandable that you will be worried, work hard not to communicate your anxiety to your child.

2. Accept the reality of the voice experience for your child; ask about the voices, how long the child has been hearing them, who or what they are, whether they have names, what they say, etc.

3. Let your child know that many other children hear voices and that usually they go away after a while.

4. Even if the voices do not disappear your child may learn to live in harmony with them.

5. It is important to break down your child’s sense of isolation and difference from other children. Your child is special – unusual perhaps, but really not abnormal.

6. Find out if your child has any difficulties or problems that he or she finds very hard to cope with, and work on fixing those problems. Think back to when the voices first started. What was happening to your child at the time? Was there anything unusual or stressful occurring?

7. If you think you need outside help, find a therapist who is prepared to accept your child’s experiences and work systematically with him or her to understand and cope better with the voices.

8. Be ready to listen to your child if he or she wants to talk about the voices. Use drawing, painting, acting and other creative ways to help the child to describe what is happening in his or her life.

9. Get on with your lives and try not to let the experience of hearing voices become the centre of your child’s life or your own.

10. Most children who live well with their voices have supportive families who accept the experience as part of who their child is. You can do this too!

Conclusion

In conclusion we would like to stress that, in our view, labelling a seven-year-old child as schizophrenic and subjecting her to powerful psychotropic medication and periodic hospitalisation is unlikely to help resolve her problems. Indeed, the opposite is most probable: children treated in this way will simply become more powerless. Because your well respected, award winning show reaches out to so many people, we are concerned that there will be many viewers who will be left with the impression that the treatment Jani receives is the only method available. We fear that this may cause some children to be subjected to an unnecessary lifetime in psychiatric care. It is very important to recognise that hearing voices, in itself, is not a sign of psychopathology.

We hope you will give consideration to the possibility of making a future programme showing the other side of the story, one of hope, optimism and with a focus on recovery. Perhaps you could make a programme about a child with similar voice experiences to Jani, who has been helped to come to terms with her or his experiences and to discuss with the child, parents and therapists how this was achieved? If there is any way we could help make this happen, please contact us.

We look forward to hearing from you on the issues raised in our letter.

Yours sincerely,

Paul Baker

INTERVOICE coordinator

(Letter re-edited with the kind assistance of Professor Richard Bentall)

For the Selected bibliography please see original piece at Mad In America.  http://www.madinamerica.com/2013/01/the-hearing-voices-movement-in-response-to-a-father-my-daughter-the-schizophrenic/

Here are the first several comments that followed:

  1. Thanks for posting Jacqui.

    The Guardian article and story about the little girl pathologised by psychiatry and her father was harrowing to read and think about. I remember it being promoted before. Like a circus act in bygone days but more sinister and scary. Subjecting a child to these strong psychiatric drugs it’s a wonder she can function at all.

    It’s encouraging to hear of the Hearing Voices movement’s work, Chrys

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    • Thanks Chrys.

      This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.

      To counter-balance such a disturbing story I felt it was crucial to highlight the work of the Hearing Voices Movement which offers such a humane and hopeful approach and a viable alternative for Jani and other children like her, who are suffering because of scary voices and visions. There is always hope.

      Jacqui

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  2. While reading “Blue-Eyed Tree Frog”, thing in the left side of my head said “cognitive dissonance”.

    I’ve never heard of cognitive dissonance so I had to look it up to see if it exists. It does.

    I cannot claim “cognitive dissonance” as my own thought. It distinctly is NOT my own. How’s that for a real-time example of mental hearing?

    I don’t know if cognitive dissonance is “professionally” observed in Jani. I think it would benefit her greatly, and she would do remarkably well, to prescribe the treatment of: study linguistics. The greater her vocabulary becomes, the better she will be able to know and understand her own mind, and effectively communicate what she experiences to others.

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    • Interesting how those words came to you – from the collective unconscious perhaps?! – but I wonder who is actually suffering from cognitive dissonance. Is it 8 year old Jani who seems to be able to articulate and communicate about her frightening experiences so clearly, or is it the adults around her? How do they fail to see and hear the meaning in her experiences, rendering them a symptom of schizophrenia instead? I wonder if it is they who need study further…

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      • I love Jani. I’m fascinated by her. I wish I could meet her and talk with her.

        I believe in my heart that she really was born exactly as she is. I think her mind / psyche very much IS a real issue. I don’t know if I’d call her “schizophrenic” but I would call her Psychic (psychic, meaning – her psyche is distinct and remarkable and very active, obviously). Psyche is NOT a disease but that doesn’t mean it is always easy to live with. It can be outright brutal and even Hellish (such is life). There are various states of Psyche. An active one is *psychic*. It shouldn’t be so complicated.

        If she is renaming herself, it seems that “cognitive dissonance” could be an accurate description of what she’s doing. I read that she HATES her name “January” – which I think is really significant and needs to be understood. SOMETHING is motivating her to find a new name for herself. That’s a big deal.

        I don’t blame her family (or the rest of the world) for calling her schizophrenic. As of right now, people don’t know any different. Who could honestly deny the fact that she IS how she is? I can’t.

        To be real honest, I resent the fact that people are trying to spin the “abuse” angle, suggesting that abuse or neglect is what is causing her condition. That is BS. There very well may be some of those issues, but the girl IS born as she is. I think she DOES have something “genetic”. I think she IS a genuine psyche-active person. I don’t see her as “sick” but I do see her as somebody who needs a LOT of support to know and understand what she “has” and how and why she has it. I see her as 100% GENUINE: whatever it may be, she’s BORN that way.

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        • I am not sure that people are trying to ‘spin’ anything, just reflecting on what comes up for them when reading and hearing about Jani and her treatment and providing factual information that has previously been in the public domain.

          I appreciate your wish to not blame but seek to try and understand. However I don’t believe in schizophrenia. I think it is a damaging concept and that so called symptoms are reactions, often to traumatic or overwhelming experiences. I also feel deeply troubled by what is really going on here although ultimately, all we can all do, is speculate, muse, discuss…

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          • Let’s take a closer look:

            http://www.thefreedictionary.com/schizophrenia

            Do you see where it says

            “2. behaviour that appears to be motivated by contradictory or conflicting principles”

            ?

            Now let’s take that and pair it up with “cognitive dissonance”

            http://www.thefreedictionary.com/cognitive+dissonance

            A condition of conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions

            It seems to me (with my very basic, uneducated intelligence) that “behaviour that appears to be motivated by contradictory or conflicting principles” and “conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions” are PRACTICALLY THE SAME THING.

            For the record, I state and declare that I DID hear “cognitive dissonance” inside of my mind and did NOT previously know that term in ANY way, not even “unconsciously” or “subconsciously”. I simply have NEVER heard of “cognitive dissonance” ever before except FROM RIGHT INSIDE OF MY OWN HEAD, LIVE, AS I WAS READING. I was “brave” and “courageous” enough to actually type (publicly) exactly what I experienced (heard) inside of my “psycho”, “schizo” head.

            Hallucinations CAN’T BE CORRECT. About anything. And if they are, it isn’t a hallucination.

            Let the professionals look for “cognitive dissonance” in Jani. If they can confirm that, to support their schizophrenia diagnosis … hold on.

            Is anyone truly interested in actually helping the child? Is anyone truly interested in UNDERSTANDING HER?

            Let’s take it a step further:

            What is her INNER CONFLICT? Here’s a clue: she HATES her name. She is RENAMING herself.

            Why?.

            The inner-world is a REAL place. Lots and lots of activity (on the inside). One more time: psyche is NOT a disease.

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          • In reply to mjk: “2. behaviour that appears to be motivated by contradictory or conflicting principles”. It “appears”. To any unengaged observer, like an mh professional for instance. It may also “appear” so to a parent whose need to himself appear as the perfect parent isn’t met by a child who reacts to the parent reflecting the parent’s imperfection. A psychiatric “symptom” is a reaction to life that is taken out of its context with life. Thus the cognitive dissonance doesn’t happen in the person who’s labeled with “mental illness” on the grounds of psychiatric “symptoms”, but in those who label.

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  3. This story is all over You-Tube, too and it made me so sad I couldn’t watch the whole thing. I remember seeing this letter to Oprah a few years ago and thinking that this list of suggestions was great. So glad to see it re-posted here.

    It’s sad to think how many creatives, spiritualists, or entrepreneurs in our society are being snuffed out by this stuff. I’ve had to do some grief work around this off and on. What’s helped lately is a Bible verse from Jeremiah about “He will restore what the locusts have eaten.” [No offense meant to Non-christians] Much of what I’ve lost to psychiatry has now been restored in my life. Hopefully we can build a way to do this more often for our brothers and sisters and step-children like this in bondage.

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  4. I’ve been following Jani’s case for a while and think her treatment with a mega drug cocktail and her exploitation by the media and her parents is unconscionable. The work with children who hear voices, on the other hand, is inspiring.

    Jacqui, Did they ever receive a response from Oprah? And have you considered sending this letter to the author of the book (Jani’s dad) via his publisher? I do believe he wants to help his child — who I see as creative and gifted as well as disturbed — perhaps, perhaps he would listen.

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    • I agree that the exploitation of Jani is unconscionable. It is also heartbreaking that her creative attempts to survive, i.e. the voices and visions that she experiences, have been so comprehensively misunderstood.

      Fortunately, healing alternatives do exist and the fantastic work of the Voice Collective project in London is a brilliant example of this, an approach that I sincerely hope will become more widely available to children like Jani and their families.

      We never received a response from Oprah but as you suggest, it might be worth trying to send this letter directly to Jani’s father. Perhaps he would listen…

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  5. Here is the family’s Facebook page: https://www.facebook.com/janifoundation?ref=ts&fref=ts

    I resisted medicating my son for three years. Along with the voices, he had painful tactile hallucinations and frightening visual hallucinations. An array of therapists did not help. He is on meds now, which makes me very sad. However, he is no longer tormented by seeing demons cutting off people’s heads, for example. I’m hoping that the new therapist will be able to help him resolve this stuff. My guess is that Jani’s family is simply beside themselves, as am I. My heart goes out to them.

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    • I am sorry to hear about the awful time you and your son have been having. I have met and worked with many families who have been beside themselves with worry about their kids. As a parent I can entirely empathise. That is why I posted the 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices: from our experiences, the less alarmed parents feel, the better the outcomes for their children.

      I hope that your son is able to get the support from his therapist to make sense of the tormenting experiences that he was having. Wishing you both all the best.

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  6. Prior to her being subjected to the abuse of coercive-medical psychiatry, Jani was severely abused in her home.

    A few years back, Jani’s father was surprisingly forthright, in writing about this, online; yet, some time ago, he began scrubbing his tracks.

    For example, he removed the following two paragraphs from his own blog,http://www.januaryfirst.org (and then took that blog offline):

    “We tried everything. Positive reinforcement. Negative reinforcement. Hitting her back (I won’t tell you how many people told us that all she needed was a good beating). We took all her toys away. We gave her toys away. We tried starving her. We did EVERYTHING we could to try and break her. Nothing worked.

    “The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage.
    We got a referral to a psychiatrist. Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times. Today, Jani is no longer a brat. Today, Jani is schizophrenic.”

    Source:

    http://bipolar-stanscroniclesandnarritive.blogspot.com/2009/07/los-angeles-times-reporter-defends.html?showComment=1314932254631

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      • Jacqui,

        If the exact nature of Jani’s current ‘treatment’ can’t be discovered by reading her father’s new book (which I have never read, but which I know is now being featured in the Guardian), I believe we can, nonetheless, reasonably surmise, that Jani is a young person whose parents are – with the help of psychiatrists – drugging her behaviors continually; for, in the course of their seeking help for her, years ago, Jani’s parents came to developing a ‘mental health’ lobbying platform, vis–à–vis Jani’s mom (Susan) hosting her own weekly radio show called, “Bipolar Nation,” and by way of Jani’s dad (Michael) often co-hosting…

        Both parents are outspoken, in their opinions, on that show (as, of course, most radio show hosts will be); sadly (for their kids), not infrequently, they are inclined to broadcast their children’s ‘mental health’ issues on that show. (That said, now, hesitantly, I mention the link to their free podcasts):

        http://www.latalkradio.com/Bipolar.php

        In your comment, above, at January 22, 2013 at 7:50 am, to Chrys, you say:

        “This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.”

        I share your sense of horror. (Indeed, *never* do I cease to be troubled, by the latest example of parents publicizing their kids’ ‘mental health’ issues; personally, I struggle, wondering: is it OK even to discuss the most trivial matters pertaining to my child’s life, online? Hypothetically speaking: can I even mention what I may consider a disappointing report card, in good conscience? I think not. (But, of course, mentioning ones child’s doings, from a position of relative anonymity, might not be so bad. I’m uncomfortable with it, when people do it; but, the anonymous approach may be somewhat more acceptable.) Certainly, I’d not want to be one to attach *any* kid’… read more

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  7. First of all, sorry I did not know about the possiblity to sign the paper. In my daily work I meet far too often children and young people coming to our place with psychiatric diagnosis and prescriptions of drugs. Fortunately I am often part of a change, I have the joy to work with people who believe in other things, people who believe in the importance of being present and participating in a relationship to try to find out how come it is like this. And there are answers, always! Not necessarily easily found, not necessarily comfortable, sometimes very painful issues to discover, sometimes with a lot of guilt and sleepless nights. So it is important to be there together with the child and his / her family (if possible). There are no other way. It can never ever be acceptable to define a child or a young person having a psychaitric illness without taking into account the context, life conditions, family, society, etc… And sad to say, but have also very many times met children and young people getting worse in a “professional” context with its manuals, methods, and different criterias. I have a dream about a different approach, about a knowledge which include many people, also the professional “helper”, a knowledge which has to do with trust, hope, taking a responsibilty and to find ways to collaborate.

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    • I agree Carina that there are ALWAYS answers, even if they lead to some very painful, uncomfortable issues. No experience, nor person is utterly incomprehesible, if we are simply willing to be with people, relate to them and really hear what they have to say. Sadly many ‘treatments’ actually make matters so much worse which is a travesty. Fortunately, there are a growing number of us who are expressing our outrage at such misguided attempts to help and who also have the knowledge and experience to advocate ways of working collaboratively that really do help.

      Looking forward to collaborating with you and others in Sweden in April, to help spread the word about what works!

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      • Yes it will be great to see you, and to listen to you of course!
        This morning on my way to work I met a mother and her four years old daughter on their way to day care (or how to call it in English). In the beginning of last autumn a colleauge Hanna and I met the girl and her parents who at that time were in a chock since a psychologist after meeting the girl ONE time had told them that the girl has a very severe autism and has to start medicating and go through psychological tests. They were also told that the girl will never be able to live “a normal” life. Well, to make a long story very short, we have seen the parents during some months and listened to their story over the last ten years and how different things have happenened in their life, and not to say that everything is totally ok by now, but they again trust their own feelings and experiences towards the daughter and have decide not to go back to child psychiatry. Welcome to Gothenburg!!!

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        • This is an all too common experience, in many parts of the world it seems Carina. It just makes me more determined to continue to raise awareness of the harm caused by those who are supposed to help, and of the many excellent alternatives that are developing across the world. This web site is a fantastic way of spreading awareness of both of these crucial issues. Pleased to ‘meet’ you here – very much look forward to meeting you in Gothenburg in the Spring!

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  8. Jacqui,

    This family has received a great deal of publicity in recent years, and it is difficult to avoid the conclusion that the parents have encouraged the child’s dysfunctionality for their own gain. As long as all the criteria for these so-called illnesses are behavioral, this kind of thing is almost inevitable. Most commonly, this takes the form of parents coaching the child with a view to obtaining disability income. But more exotic versions can and do occur.

    Philip Hickey, PhD
    http://behaviorismandmentalhealth.com/

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    • Parents coaching children in order to obtain disability income isn’t something I know much about but I can imagine it happens. As to whether so-called illnesses arebehavioral is open to debate. It seems to me that troubling behaviours are the manifestation and consequence of overwhelming emotions, reactions to the environment, impact of significant relationships etc. Simply switching the frame from illness to behaviour isn’t the answer for me. A focus on it may be part of what helps makes sense of the whole person and their experience…

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  9. I so appreciate this, Jacqui.

    I have been suicidally depressed many times, but I have never heard voices. I have talked with voice-hearers in the hospital very matter-of-factly, but I never thought about this approach until I heard of HVN, just a few weeks ago.

    Your post is enlightening. I am a peer specialist, and I am so grateful for the information I get at MIA. I am in your debt.

    Pam

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  10. I wrote about Jani as an exams project and did a lot of research as her father has used her to promote his blog and later the book based on his blog – and to beg for money. It is one of the most tragic public exploitations of a child I have ever been a witness to. He has been investigated for sexual abuse of jani but never convicted. He has himself written about the violence he and Janis’s mother exposed Jani to before he found out that that was not a smart thing to do on the net. He becomes infuriated if he is criticized on his blog and no form of critique is tolerated so no dialog is ever entered into unless it is basically praising especially him. There are clips when Jani is just weeks old and he is talking about her hallucinating! I concluded after reading, watching video clips and listening to their radio program that we have here a case of what could go under the heading of Munchausen by proxy syndrome. The interview with Oprah btw shows clearly (my opinion) that Oprah is out of her depth and that she believes Jani is ill and addresses her as such.

    However what is also dreadful is we have a psychiatric system prepared to drug Jani to the gills and ignore the family life which in Jani’s case is plastered all over the internet, though now-a-days it is carefully planned and orchestrated. There are clips where it is so obvious Jani is trying to please mom and dad (and the camera) by waving a plastic knife around so that the staff can say she needs to be admitted as violent(!)

    Thanks Jacqui for bringing the plight of this poor child to our attention again, and who knows maybe one day she will read and hear that another truth also exists…

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Health

#TBT: What is Trauma?

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These are important points about trauma to remember: how it is experienced by the individual matters more than the nature of the event. I would also like to point out to those who think that doctors and nurses cannot cause PTSD, trauma inflicted by caregivers, as seen above, tends to be the most severe, esp when repeated. So when psychiatric caregivers repeatedly seclude and restrain patients in abusive and brutal fashion, as they do and did me, trauma results inevitably in those who are prone to it…

I had a long talk with my psychiatrist yesterday about my ongoing anger on this issue,and i said to her that it was easier for a Mengele twin to forgive the Nazis than for me to forgive Michael Balkunas, MD because the whole world acknowledged (or most of it) the heinous deeds of Hitler and Mengele, and grieved for the slaughtered millions in WWII…they acknowledge that terrible wrongs were done. But who ever acknowledges that wrongs were done to me, or to other mental patients? NO ONE! Entire nations apologize to the Jews and even the violated catholic children get an apology from Pope Francis but american mental patients just get more forced Haldol shots and silencing! Am I angry, yes! And hurt and my heart races and i get tearful every time i even go to that place where i tHink about Manchester or Middlesex or Hallbrook, or st raphaels or Yale or new Britain General or so many other bad bad places i have been…but i am leaving Connecticut. I have to. i will be moving to Vermont on November first, whether they really want me, destitute or not, because i believe they have a kinder system towards both the people and the environment up there. And finally, as Rainer Maria Rilke’s wonderful poem “The Archaic torso of Apollo” ends, “Du must dein leben andern…” Or you must change your life….and that is what i am doing, in huge style. Changing everything. Ending one life and starting a brand new one in another place i have only once spent 6 weeks…i know no one there except two people i met there this summer. But i can do it. I survived rape and poverty and near murder. I can survive anything.

Dr. Kathleen Young's avatarDr. Kathleen Young: Treating Trauma in Tucson

Happy Thursday! Today I want to revisit a foundational post and a good starting place for further exploration of Treating Trauma.

What is Trauma?

originally posted onApril 8, 2009

What do  therapists mean when we talk about trauma?

One definition I like states that “psychological trauma is the unique individual experience of an event or enduring conditions in which: “The individual’s ability to integrate his/her emotional experience is overwhelmed or the individual experiences (subjectively) a threat to life, bodily integrity, or sanity.” (Pearlman & Saakvitne, 1995, p. 60)

The important part of this definition in my practice is the emphasis on “unique individual experience”.  You get to define which experiences are traumatic for you, whether or not it would impact others in the same manner.  It’s not the objective facts that determine whether an event is traumatic,  but your own emotional experience of the event.

Put more…

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Health

Lost and Never Found: An Alcoholic’s Unknown Story

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Here is what I wrote in response to this amazing post on Taking the Mask Off. A difficult post to read but so very worthwhile: Dear CP,

I am crying as I write this, and trying not to wipe away my tears, because other people always hand me kleenex saying, “Don’t cry, don’t cry!” when sometimes the world has sad stories to tell and crying is a good good good way to deal with this and their kleenex is just a way of telling me of THEIR discomfort with my feelings.

But I cry not only out of sadness but because you understood that 12 year old daughter’s undying loyalty and her love for her mother, and you also “got” her drunken abused mother so incredibly well. This has made you, Cortland, such an incredibly empathetic person, I feel honored and a bit safer in the world just knowing you are here in it with me.

Thank you for feeling safe enough to share this story with us. You amaze me, constantly. I was unable to read this for the longest time, as it brought up difficult feelings but I am so very glad I did…It is an astonishing and uplifting story fundamentally, largely because of your attitude and what you learned from it all. AND because of what you insist on teaching us from it.

Right on! and WRITE on, and fight the good fight because that is all any of us can do. And thank you Cortland, for being you. You give me hope beyond hope that there is good in the world.

Love,

Pamela Spiro Wagner

Art, Health, Seclusion and Restraints

Trio of Psychiatric Abuse Collages: encounter, restraint and seclusion

Gallery 6 Comments

Encounter in Seclusion Room - collage of torn paper
Encounter in Seclusion Room – collage of torn paper
Hospital Seclusion Room
Hospital Seclusion Room

 

Nude Schizophrenic IN restraints While Bored nurse Looks On
Nude Schizophrenic IN restraints While Bored nurse Looks On

 

you get the idea….no violence, just a scornful set of nurses and aides and a security guard willing to do anything he was asked…and chaos broke loose with terrible consequences.

Health

Ignorance: The Human Disease

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Some amazing musings on Borderline Personality “disorder” by taking the mask off. Beautiful post. I will comment later.

Later: one comment i did want to make is this: so far as i know, and despite current claims, RW never claimed to suffer from anything other than depression and drug and alcohol addiction. He never to my knowledge claimed to be “bipolar.” Now, if one of his drugs of choice in self-medicating his depression was cocaine, and i am not saying i know this to be a fact, only supposition, then that RW may have been using also Alcohol to reduce the manic frenetic highs of cocaine, not that he naturally experienced highs and lows. 

But now certain website want to place Williams under their bipolar umbrella.

I frankly find it troubling this push to subsume everyone with depression under t he bipolar blanket.

If it produced fewer people suffering from longterm disability and mental illness as a result, then i would cheer it. But in point of fact, research has shown that even in strictly diagnosed Bipolar 1 in which mania, naturally has occurred, treatment with lithium has not in fact served people as well as they claim. In decades before lithium came on the market, before they claimed to be able to “treat” manic-deproession, sufferers largely were rarely seen in the large state hospitals and usually only on a temporary basis. They were not longterm or chronic patients. Usually they got better and if they occasionally suffered downs again, the manic episodes might never be seen again after the initial one. The point being that bipolar susceptibility was not the chronic and terribly disabling illness that it has suddenly become, and i blame the medications for that development. That and the huge expansion of the diagnosis into BipolarII so that everyone with depression, even bereavement, is now labelled bipolar with several devastating consequences.

 

one is that the person is told they have a chronic, severe incurable mental illness for which they must take meds the rest of their lives, which will end up being a vicious cycle. That mentality produces enormous disability, lifelong. Two is that it ruins lives that might have been productive had the verdict been less dire and the treatment less dire too. Instead of telling someone who is depressed that their occasionally periods of cheer or even anger are appropriate, doctors see them as symptoms of this new entity bipolar II and use new useless drugs on them, including antipsychotics, with terrible side effects and psychological effects that are even worse. I have literally never seen anyone once diagnosed with Bipolar II get better unless they rejected the dx entirely and left the labeling System altogether…how can anyone escape it otherwiThey want you to believe that your moods are an illnesss rather than a healthy way to fight back against depression, as if it is abnormal to feel anything other than sadness! It is, in a word Meshugas of the highest order.

Health, Mental Illness, Psychiatry

Solitary Confinement is Torture and You, Michael E. Balkunas, MD, Can Go Fork Yourself!

5 Comments

This is from the New York Times today:

To the Editor:

Re “When Cell Door Opens, Tough Tactics and Risk” (“Locked In” series, front page, July 29):

The events leading to Charles Jason Toll’s death highlight the dangers of prison procedures, especially for vulnerable inmates who suffer from mental illness. Particularly concerning is Mr. Toll’s solitary confinement, a disciplinary technique repeatedly identified as ineffective and counterproductive, and even as torture.

The Justice Department has found that solitary confinement of mentally ill people violates their rights under the Eighth Amendment and the Americans With Disabilities Act.

Solitary confinement worsens psychological symptoms and can trigger outbursts tied to the person’s feelings of hopelessness and loss of a sense of self through extreme social isolation and sensory deprivation.

Providing mentally ill people with appropriate and compassionate mental health care, including integration of psychiatric, psychological and psychoanalytically oriented treatments, is crucial in restoring a person’s identity, alleviating feelings of loss and distress and reducing violence.

Mr. Toll’s solitary confinement, suffering and death were avoidable, and again show that the mentally ill are more likely victims of violence, not the perpetrators.

SUSAN McNAMARA
Middletown, Conn., July 30, 2014

The writer is a psychiatrist.

_____________________________

When I was a patient in May and June 2014 at New Britain’s Hospital of Central Connecticut, Dr Michael Edward Balkunas regularly imprisoned me in a horrific seclusion cell, without a single amenity but a concrete built-in bed and rubberized mattress, for nothing more than making too much noise for the approved hospital milieu. In fact, several nurses took it upon themselves, with Dr Balkunas approval, to do the same. This became literally routine. I was NOT, as is required by the Centers for Medicare and Medicaid, in IMMINENT danger of causing severe harm to myself or others. No, I was loud, disruptive and uncooperative, and I was rude. Period.

My first reaction when the double doors locked behind me was immediately to start screaming, at the top of my lungs, from the base of my lungs. But screaming brought no one. Okay, they did soon come in at me with three IM injections, but they came back every time with IM injections anyway, because as I took to calling it, these were part of the drill, they were “punishment injections.” I was pushed onto my stomach and shoved into the mattress so I couldn’t breathe and injected whether I liked it or not. I tried to say, “STOP! I will take the injections, just don’t hold me down.”

But sometimes they didn’t listen to me, and held me down anyway, and I got scared that they would kill me, because it didn’t matter that I didn’t struggle. There were four of them to the one of me, and they expected me to fight and so they forced my face into the mattress and held me tight, hard, and with all their weight….until I felt my breath go out of me. Did they have any idea that I was NOT struggling, that I felt I was going to die? Did they have any idea that they were killing me?

I don’t know. I don’t know. All I know is that I felt in mortal danger when they wouldn’t let me just accept the injections on my own, in my arm, but insisted on giving them to me by force in the buttocks, even when I said I would take them voluntarily.

Then they would leave and lock the double doors. And I would scream, and NO ONE would respond, even though I eventually learned that they could not only hear me through the intercom hidden somewhere in the ceiling, they could also talk to me. They wouldn’t but they could have. When screaming brought no one, I would strip and urinate on the floor, and I would defecate too as much as i could, and smear everything on the walls and floor. I would even eat it and paint it on my body. I didn’t care, I DIDN’T CARE! I just wanted someone to come in and help me.

Several times I washed and colored my hair with urine, thoroughly. But no one came back for hours. The urine, which completely soaked my hair, had time to dry completely. Not that they cared or noticed. If they had, they said nothing. It was nothing to them. Only Barbara RN asked me what was in my hair, and insisted that she wash it out when finally they released me. I went with her to the shower-tub room and allowed her to do so, but only one other person was kind enough to notice and do that. Everyone else just released me and expected me to somehow be reformed and “better” after my hours of punishment.

Of course that wasn’t the case. I got worse, much worse. I started defecating in my bedroom, at any hour,for any reason, any time I was frustrated or angry. They decided I had “borderline personality disorder,” that I was simply manipulating them. They failed to see that they had traumatized and broken me. They failed to see their continuing role in my behaviors…which were getting worse and worse the more they punished me. Every time they secluded me, or four-pointed me, I regressed more.

Dr Balkunas actually decided to commit me to the State Hospital claiming it would help me “get better.” But really he was just in punishment mode. You could tell, because he wasn’t using any of the methods that you are supposed to use for REAL borderline patients….If he really believed I was BPD he wouldn’t have kept at it. But he knew from my brother, a psychiatrist too, and my own psychiatrist, that I do not have BPD, so that was bogus and just an excuse to torture me. He didn’t really think I had BPD. He just needed an excuse to use solitary confinement and he knew that schizophrenia was NOT a good reason. A very BAD reason in fact, so he invented a secondary diagnosis to use. But the thing is, there are other therapies you are supposed to use in BPD, and he never bothered to treat me with anything but punishment and then threw up his hands and said, Well, the antipsychotic drugs take time to work, so you will go to the SH until they do.

Bastard! He gave up on me without even trying to help…so-called saintly doctor. Just a bastard! Because torture doesn’t work to make me better, he decides that I am the one at fault????? Well GO FUCK HIM UP THE ASS WITH A BROKEN GLASS JAR!

Health

HOW TO PREVENT A CHOKING FIT

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1. CLOSE YOUR MOUTH AND BREATHE THROUGH YOUR NOSE.

This will make you realize you CAN breathe just fine and immediately stop the panic.

2. WHILE BREATHING THROUGH YOUR NOSE, gently try to push the food item back up into your mouth, or swallow it if you can.

 

I figured this out while living alone. I would panic when I felt myself choking. It works like a miracle, because it is usually a spasm in the upper throat, near your mouth, and not a closed off pharynx that causes coking sensationss. You just have to understand that you CAN still breathe through your nose and that will end the panic. Once the panicky feelings are over, everything is easier to deal with and you can usually spit out the food or even find a way to swallow it. But at least you realize that you are not imminently going to die, which is a good thing to know.

 

Hope this advice helps someone. If it does, I would love some feedback. I have offered it to friends, and they have loved it, found it useful too, so I know it works.

 

Best wishes to all,

 

Pam

Health

Beyond Recovery: Stage Five

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I want to reblog this brilliant post by Anne C. Woodlen and then i will add my own editorial comments if i can in a later post or edit. In the meantime, i think it speaks for itself and says just about what i would want to tell a lot of young people newly diagnosed with bpd or did or add or even bipolar disorder and getting on disability, preparing for a life “in the system” – it sucks and it isn’t worth it unless you are floridly psychotic. And even then, don’t believe what they tell you about antipsychotic drugs. There ain’t no such medication, only sedatives that may or may not quiet things down temporarily. The only way out is through, if you can do it with a wise and caring guide and community. Don’t get stuck as i am, on multiple antipsychotic drugs, addicted to them so that getting off them only means you get more psychotic than ever. Psychosis need not be a lifelong problem, but it certainly will be if you keep taking high doses of the drugs and never explore other options.

annecwoodlen's avatarBehind the Locked Doors of Inpatient Psychiatry

Hello,

My name is Dustin and I live in Michigan. When I was seventeen years old my mother put me in a psychiatric hospital called Forest View. The abuse I felt violated me to the core! I felt like I was being raped having to submit to all the rules, the bullying and the emotional abuse. To have your dignity removed when you are an innocent patient and just want genuine, kind, gentle care, and get unprofessional jerks who you can tell are fake and just care about getting paid is a horrible experience.   If anything it only caused me more traumas with the trauma that I already had. I am now twenty-two years old and live on disability while also living my life as a hermit because now I am afraid of people due to the awful treatment I endured.  I was diagnosed with Borderline Personality Disorder by a REAL…

View original post 856 more words

Art, Health

AUDIO Interview with Pamela Spiro Wagner: WNPR on Connecticut Hospitals’ Use of Restraints and Seclusion

(***SEE PAMELA’S COMMENTS AT BOTTOM OF PAGE…)

Connecticut Hospitals Responding to Psychiatric Restraint Numbers

By DAVIS DUNAVIN

  • View Slideshow
    Pamela Spiro Wagner and her art.
    Davis Dunavin WNPR
    1 of 3
“They don’t want you to get out. They pull [restraints] as tight as possible to the sides of the bed.”
Pamela Spiro Wagner

Pamela Spiro Wagner’s apartment is full of art she’s made while in psychiatric care. One piece dominates the room. It looks like a painting at first. It shows a threadbare seclusion room and a restraining bed.

“That’s made of Vogue magazines. If you look at it, you’ll see there’s a little label of Prada leather on the leather restraints, which was done on purpose,” Wagner said. She made it while alone in a hospital seclusion room. The magazines were the only art supplies she had.

Wagner has schizophrenia. She’s been in and out of Connecticut hospitals for decades, and she knows what it’s like to be restrained. “They use leather, or rubber, or plastic, or whatever restraints that they wrap around your wrists, usually tight because they don’t want you to get out. They pull them as tight as possible to the sides of the bed,” she said.

Wagner was put in four-point restraints. That means each limb is bolted to the bed, and she said she’s stayed there for nearly a day at a time. “I would just scream from the base of my lungs,” she said, “like the screams that if you had any heart, your heart would break if you heard me scream.”

“Restraint is Pretty Traumatic”

Patricia Rehmer, Commissioner of the Connecticut Department of Mental Health and Addiction Services, said the department has cut down on restraint since receiving a federal grant in 2008. “We know,” she said. “The literature is clear; the clients are clear. Seclusion and restraint is usually a pretty traumatic event. If we had our way, there would be no seclusion and restraint. We’d love to get to zero, but that’s not always possible.”

Credit WebKazoo / Connecticut Health I-Team

The Department of Mental Health and Addiction Services oversees state hospitals in Bridgeport, New Haven, Hartford, and Middletown. Rehmer said that because patients stay longer at state hospitals, doctors and nurses have more time to work with them on ways to avoid restraint. “Frankly, there are differences between our hospitals, our hospital beds, and general hospital beds, for example,” she said.

Read C-HIT Report: State Restrains Psychiatric Patients at High Rate

Restraining or secluding patients used to be commonplace in psychiatric facilities, but ten years after a series of deaths nationwide, there’s been a push to lessen the time patients spend restrained. Federal data released earlier this month showed that Connecticut’s rates of restraint are still high compared to most of the country – more than double the national average. The state ranks eleventh nationwide, and third for use of restraints among the elderly.

Connecticut Institutions Adapt

Bridgeport Hospital topped the list statewide. The hospital has a large geriatric unit, and the numbers were high for elderly patients.

“We realized about a year and a half ago that we were really having a problem,” said Ryan O’Connell, Bridgeport Hospital’s vice president of performance and risk management. He pointed out that the numbers only go up to the middle of 2013, and said that the hospital started changing its practices since then. “It was much more common for us to go to some type of restraint,” he said.

O’Connell said the image of the barren room and four leather straps is all wrong at Bridgeport. They’re mostly trying to keep patients with dementia from wandering off and into danger. “I think it’s really important,” he said, “that nobody thinks that we were tying people down [by their] hands and feet.”

Bridgeport is moving toward something called comfort rooms, with colorful wallpaper, toys, games, or comfortable furniture. They’re becoming common alternatives in a lot of institutions, like Connecticut Valley Hospital in Middletown — a state hospital that cut back on using restraints by about 88 percent in the past decade.

In 2002, a patient died after being restrained at CVH. The hospital conducted investigations after the death, but Director Charles Dike said they’d already decided to make a change before it happened. “Our target is to make sure we use it as sparingly as possible, only when it is absolutely necessary, and that we discontinue it as quickly as possible,” he said.

CVH started using comfort rooms years ago. Dike said that instead of putting a patient in restraints, they try to encourage a patient to spend a little time alone doing something relaxing. He said, “If somebody says to me, when I’m not doing so well, I like to go into my room and play music, and that helps me calm down…” He said that nurses will remember, and bring it up if the patient starts to lose control.

Dike doesn’t expect to stop using restraints. He said there will always be outliers — patients who come straight from emergency rooms and prisons.

Ellen Blair is the nurse director at Hartford’s Institute of Living, which is part of the Hartford Hospital system. Figures for 2013 show Hartford Hospital restrains patients at a little over the state average, but she said they’ve cut back since then thanks to new training programs and more comfort rooms.

Blair said that when a patient does go into restraints, they’re looked after. “I personally go and make sure I know that patient,” she said. “We all talk about it at least every couple of hours, because we don’t want to keep it going any longer than we have to.” She said patients aren’t left alone, and that restraint is only used as a last resort when patients are dangerous to themselves or others.

“Every day,” Blair said, “we come here thinking, okay, we’re going to have a good day. We’re going to prevent people from getting agitated and having to go to that level.” Restraint, however, remains a last resort these hospitals said they don’t plan to take off the table entirely.

3 COMMENTs
Comment 3
Pamela Spiro Wagner:

Dear John Dankosky,

Thanks for posting both my earlier comments.
I must tell you that I still think your piece assiduously avoided saying anything that implicated Hartford Healthcare, and ultimately portrayed all the hospitals (NPR sponsors naturally) in a golden light. When Ellen Blair, the IOL nurse manager, stated that “every two hours” the Hartford Hospital Institute of Living nurses discuss any patient in restraints did you really recognize that this means a given patient remains in restraints? NO patient should still be in restraints after two hours, it just isn’t necessary. You should be aware that when a patient is mechanically restrained it also means that he or she has been injected in the buttocks with chemical restraints or emergency medications (though staff will never call the forcibly injected drugs by such a name as a “chemical restraint”). This is a given, but it means that the patient is almost always asleep after two hours or most certainly calm, if they were indeed truly and emergently dangerous in the first place. At the IOL, however, if he or she has not spoken the verbal “Uncle!” that is required, the nurses will not take restraints off. How can you say “I promise to stay calm…” yadda yadda if you are asleep? Nevertheless, the strict CMS guidelines are that restraints must be removed as soon as a patient is calm and no longer a danger to self or others. It should be obvious that once a drug has sedated a patient the patient is not an imminent danger to anyone. (It might be argued that both “emergency medication” and restraints are overkill and that one OR the other should be used, never both.)

“Imminent” is the operative word in the criteria for restraints: a person must pose an “IMMINENT danger to self or others.” In my case I was never really a danger to anyone. I was simply a PIA…and the staff as much as said so. If you have read my other comments below, you will have understood that even the Centers for Medicare and Medicaid (CMS) as well as SAMHSA understand that seclusion and restraints are almost never necessary, despite what the doctors and nurses told your reporter and what you summarily reported as true. As I quoted from the document put out by SAMHSA in my comments, both restraints and seclusion are usually used in retribution or as the result of a power struggle which the institution necessarily “wins” when these methods are chosen…but are rarely used as the result of emergency situations.

I suspected that this was the sort of report that you would do. Yes, you gave me a kind of voice, or at least two sentences worth, about the trauma of restraints, but you never named the institutions that restrained me so viciously, though I did name them over and over in my interview. And you gave a much greater voice to those institutions attempting to whitewash their current practices… You did not actually investigate whether or not they do as they say. Or even whether what they say they do is in fact as benign as it is cracked up to be.

Think, think, think…Ellen Blair casually mentioned ”every two hours a person remains in restraints.” What, for four hours, six hours, 19 hours as she and her cronies kept me in restraints???…WHAT IS SHE THINKING???? NO ONE SHOULD BE IN RESTRAINTS SO LONG unless something brutal is going on. Even at New Britain General I was always taken out of restraints after 2 or 3 hours. Why? Because under the influence of the medications, I got sleepy and did as I was told…Yes, even though they were brutal they never kept me restrained longer than that. As soon as the requisite hours of punishment were up, I was allowed out. Period.

Hartford Hospital’s Institute of Living should be ashamed of itself, restraining and keeping someone in restraints when asleep and then re-injecting them with medication in order to put them BACK to sleep while still in restraints as they did to me time and time again.

You know, I would give you permission to see my entire chart from my 2013 Hartford Hospital stay, if you ever wanted to investigate these charges and find out whether what I say is true. I believe in fact that they do this sort of thing regularly at the IOL Donnelly building. I do not believe I am the only one. That is the problem, you see. This is a practice of theirs. I am NOT unique and was NOT singled out but rather treated brutally because this is how they do things at the Institute of Living and from what I gather from Ellen Blair, they are still doing it.

Whether NPR cares enough to hear or report what is really being said beneath the pretty words, or to find out the truth about what goes on inside these hospitals, I do not know…I tried to inform Davis Dunavin. I do know what happens because I have been inside many times, and it has happened to me. But you did not report even a smidgen of what I told him. So much for reporting the facts or even a portion of the whole truth.

Pamela Spiro Wagner • an hour ago

I was restrained at Hartford Hospital’s Institute of Living in January 2013 for 19 hours at a time several times during a mere 3 week stay. And why? They told me repeatedly it was because “You do not follow directions.” The SAMHSA and CMS knows that restraints and seclusion are almost NEVER necessary. I quote from a SAMHSA publication: “Studies suggest that restraints and
seclusion can be harmful and is often re-traumatizing for an individual who has
suffered previous trauma…

“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.

“Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors that staff members are attempting to control or eliminate.”

When restraints and seclusion are used, certainly in my case, as my Psychiatric Advance Directive CLEARLY indicated, my symptoms always get worse, I regress to primitive behaviors and things go from a situation that might have been ameliorated with ease to something that only traumatizes me terribly (I already have PTSD on top of schizophrenia) and should traumatize any nurse who still has a heart.

When I heard via this broadcast Ellen Blair APRN say how much care they take at the IOL to avoid restraints there, I could have laughed. If so, why then would they restrain me for hours day after day for as little as tossing half a graham cracker at the wall in frustration. Indeed, if it took as few as a single nurse to put me, passive and non-resisting, into four point restraints, how could it possibly be “necessary,” except to teach me a lesson or punish me? But in fact, it was punishment most of the time, and nothing more. There was a power struggle that developed between meand Amy Taylor

MD, and she was determined to show me who was in charge. That was the problem. The only way I got out was because she took two days off, and a kindly substitute doctor took me out of restraints and asked me if I wanted to go home. I said yes,PLEASE, and that was that.

Comment 2:

I would like to add that the image of the concrete barren seclusion room and leather restraint cuffs rather than being “dead” is alive and well in many CT hospitals. I was at the Hospital of Central Connecticut, the former New Britain General Hospital in May and June of this year, 2014, and their seclusion rooms were worse than a supermax prison cell. Literally. There were NO amenities there as there are in a supermax cell, no toilet, not even a bedpan. Just a concrete bed, with a rubberized mattress. And when they considered me “dangerous” to myself, they stripped me of all my clothing and left me naked, despite my desperate pleas for a blanket for protection against the air-conditioning which was always on full-bore.

Even the doctor, who put me there time after time, told me that “the nurses would never leave you without covering or a blanket.” He did not believe me when I told him that in fact this was their regular practice. Moreover, hospital security guards were the ones to strip me forcibly and then four-pont me still naked to a bare mattress, only covering me with a sheet when I begged for one.

It was the most horrendous experience I have been through since, well, since the Institute of Living in 2013. And they did this on multiple occasions, despite KNOWING from the first that I had come in with PTSD in addition to schizophrenia and that I had an Advanced Directive that gave clear instructions about what helped me calm down and how best to treat me in order to avoid escalating situations. What is worse, the policy at HOCC is that nurses are NOT permitted to touch or lay a finger on any patient,…ONLY security guards do that. And they grab any patient willy nilly, usually with the deliberate intent to inflict pain, as the nurses told me, because if they cause pain the patient will comply. This is, excuse me, crazy! There is something very very wrong with this picture…but the staff at HOCC was so encultured with their way of doing things, that they had lost sight of how wrong it was. It simply didn’t occur to them that guards hurting patients might be not only morally wrong but just plain ineffective if they wanted to help someone get better.

But maybe I am the one who is “nuts” thinking that HOCC staff cared about anyone “getting better” — maybe they just did their “jobs” and didn’t give a hoot in hell whether the guards deliberately injured patients or not, so long as the “job” whatever it was got done…

Link to original article and art slide show:

http://wnpr.org/post/connecticut-hospitals-responding-psychiatric-restraint-numbers

Art, Health

AVENGING ANGEL: NEW ART

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Avenging Angel in Gouache - Abstract approximately 7 by 8 inches
Avenging Angel in Gouache – Abstract approximately 7 by 8 inches

 

Lots to say about the situation I am in up here in Vermont, where my assistant, the person hired to help me and make sure things go okay turned out to be a common criminal. But I am too tired and worn out by having to deal with the mess left in her wake to write about it. Suffice it to say that she stole my debit/credit card number and racked up multiple charges, was apparently drinking even in the mornings without my knowing it, and driving me at the same time. She had a hand bag full of narcotics not all of them prescribed to her, but even if they had been, what was she doing, taking narcotics and drinking and driving?!

 

Things were even worse than that, but as I said, I am exhausted and cannot go into it all now. Needless to say, she has been fired and is gone, is out of here…But she has left a mess and misery in her wake all around. What a mess maker! And I think she was the one who was stealing from me all the while last winter when I had people staying with me to prevent a hospitalization…Why did  I once trust her implicitly? Where do I find these people and WHY do I trust them at all?

 

I should have known something was wrong when I saw her handbag full of Percocet and Xanax and VIcodin and fentanyl patches etc. It was ridiculous…and then to have her buy a case of beer? But I thought “well, a beer once in a while is harmless.”…I didn’t know she was drinking at breakfast and also while driving…I am such a dimwit!

Health, Schizophrenia

Avatar therapy for persecutory auditory hallucinations: Can It Work?

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Sometimes the voices are so loud, you just have to scream...Collage made at Yale Psychiatric Hospital 2013, from scraps of magazines and glue.
Sometimes the voices are so loud, you just have to scream…

Novel ‘Avatar Therapy’ May Silence Voices in Schizophrenia

Deborah Brauser

July 03, 2014

LONDON ― A novel treatment may help patients with schizophrenia confront and even silence the internal persecutory voices they hear, new research suggests.

Avatar therapy allows patients to choose a digital face (or “avatar”) that best resembles what they picture their phantom voice to look like. Then, after discussing ahead of time the things the voice often says to the patient, a therapist sits in a separate room and “talks” through the animated avatar shown on a computer monitor in a disguised and filtered voice as it interacts with the patient.

In addition, the therapist can also talk by microphone in a normal voice to coach the patient throughout each session.

In a pilot study of 26 patients with treatment-resistant psychosis who reported auditory hallucinations, those who received 6 half-hour sessions of avatar therapy reported a significant reduction in the frequency and volume of the internal voices ― and 3 reported that the voices had disappeared altogether.

“Opening up a dialogue between a patient and the voice they’ve been hearing is powerful. This is a way to talk to it instead of only hearing 1-way conversations,” lead author and creator of the therapy program Julian Leff, MD, FRCPsych, emeritus professor at the Institute of Psychiatry in London, told meeting attendees.
Dr. Julian Leff

“As the therapist, I’m sharing the patient’s experience and can actually hear what the patient hears. But it’s important to remind them that this is something that they created and that they are in a safe space,” Dr. Leff told Medscape Medical Newsafter his presentation.

Two presentations were given here at the International Congress of the Royal College of Psychiatrists (RCPsych) 2014 the day after the study results were released in the print edition of Psychosis.

Regaining Control

According to the investigators, 1 in 4 people who hear phantom voices fail to respond to antipsychotic medication.

Dr. Leff explained that this program started a little more than 3 years ago, after he had retired “and could start thinking clearly again.” He had been interested in the phenomenon of phantom voices for more than 40 years.

“Our mind craves meaningful input. That’s its nourishment. And if it’s deprived of nourishment, it pushes out something into the outside world,” he said. “The aim of our therapy is to give the patient’s ego back its mastery over lost provinces of his mental life.”

 

The researchers used the “off-shelf programs” Facegen for the creation of the avatar faces and Annosoft LIP-SYNC for animating the lips and mouth. They also used a novel real-time voice-morphing program for the voice matching and to let the voice of a therapist to be changed.

In fact, Dr. Leff reported that one option the program provided changed his voice into that of a woman.

After a patient chose a face/avatar from among several options, the investigators could change that face. For example, 1 patient spoke of hearing an angel talk to him but also talked about wanting to live in a world of angels. So the researchers made the avatar very stern and grim so that the patient would be more willing to confront it.

Another patient chose a “red devil” avatar and a low, booming voice to represent the aggressiveness that he had been hearing for 16 years.

For the study, 26 participants between the ages of 14 and 74 years (mean age, 37.7 years; 63% men) were selected and randomly assigned to receive either avatar therapy or treatment as usual with antipsychotic medication.

The length of time for hearing voices ranged from 3.5 years to more than 30 years, and all of the patients had very low self-esteem. Those who heard more than 1 voice were told to choose the one that was most dominant.

Pocket Therapist
Dr. Julian Leff shows examples of faces used in avatar therapy at RCPsych 2014.

 

During the sessions, the therapist sat in a separate room and played dual roles. He coached the participants on how to confront and talk with the avatars in his own voice, and he also voiced the avatars. All of the sessions were recorded and given to the participants on an MP3 recorder to play back if needed, to remind the patients how to confront and talk to the auditory hallucination if it reappeared.

“We told them: It’s like having a therapist in your pocket. Use it,” said Dr. Leff.

All of the avatars started out appearing very stern; they talked loudly and said horrible things to match what the patients had been reportedly experiencing. But after patients learned to talk back to the faces in more confident tones, the avatars began to “soften up” and discuss issues rationally and even offer advice.

Most of the participants who received avatar therapy went on after the study to be able to start new jobs. In addition, most reported that the voices went down to whispers, and 3 patients reported that the voices stopped completely.

The patient who confronted the red devil avatar reported that the voice had disappeared after 2 sessions. At the 3-month follow-up, he reported that the voice had returned, although at night only; he was told to go to bed earlier (to fight possible fatigue) and to use the MP3 player immediately beforehand. On all subsequent follow-ups, he reported that the voice was completely gone, and he has since gone on to work abroad.

Another patient who reported past experiences of abuse asked that his avatar be created wearing sunglasses because he could not bear to look at its eyes. During his sessions, Dr. Leff told him through the avatar that what had happened to the patient was not his fault. And at the end of 5 sessions, the phantom voice disappeared altogether.

Although 1 female patient reported that her phantom voice had not gone away, it had gotten much quieter. “When we asked her why, she said, ‘The voice now knows that if it talks to me, I’ll talk back,’ ” said Dr. Leff.

“These people are giving a face to an incredibly destructive force in their mind. Giving them control to create the avatar lets them control the situation and even make friends with it,” he added.

“The moment that a patient says something and the avatar responds differently than before, everything changes.”

In addition, there was a significant reduction in depression scores on the Calgary Depression Scale for Schizophrenia and in suicidal ideation for the avatar participants at the 3-month follow-up assessment.

A bigger study with a proposed sample size of 140 is currently under way and is “about a quarter of the way complete,” Dr. Leff reports. Of these patients, 70 will receive avatar therapy, and 70 will receive supportive counseling.

“In order for others to master this therapy, it is necessary to construct a treatment manual and this has now been completed, in preparation for the replication study,” write the investigators.

“One of its main aims is to determine whether clinicians working in a standard setting can be trained to achieve results comparable to those that emerged from the pilot study,” they add.

“Fascinating” New Therapy

“I think this is really exciting. It’s a fascinating, new form of therapy,” session moderator Sridevi Kalidindi, FRCPsych, consultant psychiatrist and clinical lead in rehabilitation at South London and Maudsley NHS Foundation Trust in the United Kingdom, told Medscape Medical News.
Dr. Sridevi Kalidindi

“I think it is a novel way of approaching these very challenging symptoms that people have. From the early results that have been presented, it provides hope for people that they may actually be able to improve from all of these symptoms. And we may be able to reduce their distress in quite a different way from anything we’ve ever done before.”

Dr. Kalidindi, who is also chair of the Rehabilitation Faculty for the Royal College of Psychiatrists, was not involved with this research.

She added that she will be watching this ongoing program “with great interest.”

“I was very enthused to learn that more research is going on with this particularly complex group,” said Dr. Kalidindi.

“This could be something for people who have perhaps not benefitted from other types of intervention. Overall, it’s fantastic.”

International Congress of the Royal College of Psychiatrists (RCPsych) 2014. Presented in 2 oral sessions on June 26, 2014.

Psychosis. 2014;6:166-176. Full text

Original Article From MEDSCAPE:

http://www.medscape.com/viewarticle/827797?nlid=60566_2051&src=wnl_edit_medn_psyc&uac=63563AN&spon=12

Art, Health

Rocking Away a Tidal Wave of Troubles: a Painting

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Rocking Away a TIdal Wave of Troubles - gouache on archival mat board scrap
Rocking Away a Tidal Wave of Troubles – gouache on archival mat board scrap. 

I  was told by Marc and Steffie, with whom I am staying, that the sea or water represents the unconscious in some schools of thought. Which certainly makes sense to me, given how I titled this very small painting. I painted the blackbird in the stormy sky last, and can see that as a sort of link between the world of life and death, like Van Gogh’s black birds in the fields in his final paintings. But also the notion that the rocking chair can calm the stormy waters, indeed the raging tidal wave of waters outside the room, so that they become only waves but not so disturbing inside, seems to me significant. So, two questions for the pychologically or analytically minded: Why is the room red, one, and why is the chair empty? (I am serious. If you have any ideas or suggestions, I would be curious and eager for your and any interpretation. No need, just interested.)

In any event, in my sleeplessness last niight, I panicked, because I “knew” I couldn’t paint. so I put aside my decent ampersand boards, coated this bit of matboard with black to “ruin” it first, then just went to town, painting the first thing that came to mind. The chair was in the living room, but the rest was purely my imagination. If I knew what I was doing, I confess I would have painted the chair last, ON TOP of the  background, but of course, I had no idea what I was doing, so I had to paint it and repaint it as ideas came to me…Hence the messiness! Hope you enjoy!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Health, Seclusion and Restraints

Seclusion Room: Cell or Sanctuary — Amazing Article from 1959

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This supermax prison cell is better appointed than the seclusion rooms I have been put in...NO toilet or sink or blanket or bedding!
This supermax PRISON cell is better appointed than the HOSPITAL seclusion rooms I have been put into naked…which had NO toilet or sink or blanket or bedding, and was freezing cold!

THE SECLUSION ROOM – CELL OR SANCTUARY?

By HUMPHRY OSMOND, M.D., 1959

Superintendent The Saskatchewan Hospital, Weyburn

SECLUSION ROOMS, found in most psychiatric hospitals, too often look as if they were intended as temporary quarters for wild animals, or perhaps as storerooms for dangerous chemicals, rather than as shelters for sick and distressed humans.

Yet, the purpose of seclusion is clear and admirable. It is intended to reduce interaction following a rupture in interpersonal relationships between the patient who is being secluded and other patients, or members of the hospital staff.

Seclusion usually occurs when there has been acting out or a threat of it. While skilled psychiatric nurses can often handle such situations without using seclusion, it is proper that a patient, in an explosive situation, should have an opportunity to withdraw to a suitable spot to be alone for a time or in the company of someone he trusts.

When children quarrel with siblings or parents, they are often sent or asked to go to their room and be alone with toys and playthings. Adults retire to a bedroom, a study or even to the toilet. Although it was once common practice, it is no longer thought admirable to lock a child in a dark cupboard. In his own room, he gets comfort from his toys, just as an adult will soothe himself with a book, a pet animal, possibly with music, or just by being alone.

The mentally ill person, who has had a rupture of interpersonal relationships, likewise needs space under his own control where he can “pick up the bits.” The best place would be a room of his own, with familiar furnishings and his personal possessions easily visible. Wherever his retreat, it should give external stimulation as well as support and comfort.

Bare, Drab Rooms Affect Perception

 

 

Seclusion rooms in many hospitals are built to some stereotyped plan, and are poorly-lit, bare, drab rooms of a curious cube-like construction which makes them seem unduly high. There is little or no furniture, often only a mattress. Walls are usually tiled in one color only, and this sometimes white. Windows covered with heavy screening, ceiling lighting often high and remote beyond the patient’s control, heavy imprisoning doors sometimes the same color as the walls, and in the middle of the floor a brass grating over a drain hole―no wonder these rooms are suggestive and frightening. Such rooms strongly resemble the reduced environment described by Hebb* in which even well people can experience major 18 changes in thinking,. perception and mood, larked in certain non-experimental situations, notably brain washing, such environments are deliberately used. to. encourage alterations in perception. Surely then it is un-wise to place psychotic people in a situation which, since it will not afford them even minimal external stimulation, is likely to increase the perceptual disorder which many of them already have.

The need for sufficient stimulation, particularly of a visuo-auditory type, combined with carefully selected tactile and olfactory stimulation, is strongly suggested by Goldfarb’s recent work at the Ittleson Family Center with children. His work indicates that many schizophrenic children tend to inhabit a tactile-olfactory world, rather than the more common and culturally acceptable visuo-auditory one. It seems probable that schizophrenic adults may be in much the same position.

Clearly then we must provide our disturbed patient with an adequate amount of pleasurable visuo-auditory experience while in seclusion, and also let his environment be rich in socially acceptable tactile-olfactory pleasures, lest he seek the only remaining gratification―tactile-olfactory ones from his own body. Specifically, let us imagine a patient, greatly disturbed, shut up in a bare room, with bare walls, little or no clothing, and possibly only a mattress or blanket as furnishings. The visuo-auditory and tactile-olfactory enjoyments to be obtained from such surroundings are very small. Is it surprising, therefore, if his seclusion results in apsophilic (auto-erotic) activity, in the tactile experience of staff members or even in reviving a tactile and olfactory interest in his own body products of urine and feces?

These apsophilic activities, the touching and snuffling on the nursing staff, and the handling of feces and urine are likely to produce great anxiety and great resentment in those who must care for the patient. He will naturally interpret this as dislike and rejection, and a vicious circle is established. He is driven deeper and deeper into his tactile-olfactory experiences, and probably also into full hallucinatory experience. Since we are woefully short of really sophisticated staff, we must make .very vigorous efforts to see that this type of “reduced environment” seclusion is banished from the mental hospital as quickly as possible.

The seclusion room, therefore, must be not merely pleasant, but the very best room on any ward. There are several reasons for this. For one thing, if the room is pleasant, it will take away the idea of punishment―not merely by a verbal gesture, but by a change in the attitude of everyone on the ward, patients and nurses, who will both be far more impressed by the fact that the seclusion room is the best on the ward than if there is simply lip service to the effect that seclusion is not punishment. Money invested in making this room conspicuously better than other rooms “because it is for those who are the most unwell” will indicate to both nurses and patients that the hospital particularly concerns itself with those who are the sickest. The fact that the room is an object of pleasure and satisfaction to all the patients on the ward will exert considerable pressure on the disturbed patient to use this joint possession properly. This pressure will be extremely effective in preserving the room from damage.

Dimensions and Decor Important

What, then, should this “best room in the ward” be like? Particular attention must be given to its size and proportions. A small room of great height is extremely oppressive to most people. and if such a room must be used, perhaps a false ceiling should be built in. The lighting must be good, and must, at least in part, be under the patient’s own control. The walls should be pleasantly painted in bright and reassuring colors. There should be pictures on the wall, and a mirror (a metal or unbreakable mirror is permissible). The bed should be comfortable and the bed cover pleasant. Sheets, pillows and mattress must of course be provided. There should be chairs and a desk, the chairs self-colored and if possible, textured. Patterned material is best avoided, since it may have a disturbing, Rorschach-like effect. (Until we know more about the effect of patterns on patients’ perceptions, we should be cautious about patterned materials.) A carpet or rug, preferably nylon, should be on the floor, which may be of tile or linoleum, but should be light in color. To avoid uncertainty about the passage of time, a clock and a calendar should be clearly displayed. If a toilet cannot be readily available, a modern commode chair may substitute, if it is explained to the patient.

It is important here, as elsewhere in the hospital, for the furniture to be light, strong and elegant, rather than heavy or cumbersome. Heavy furniture quickly becomes a challenge to some patients to see if it can be broken. It encourages all patients to lose one of the most important skills which we all acquire in childhood―the ability to maneuver through complicated mazes of furniture. This ability includes all sorts of skills, especially subliminal psychomotor movement. Mental patients frequently lose this ability through disuse, and all too often the arrangements in the mental hospital give them no opportunity to re-acquire it, or what is even more important, to correct early the tendency to lose it. Experimental work shows that, given the opportunity, people frequently correct perceptual errors on their own. But a bare room, fitted with one massive piece of furniture affords neither encouragement nor motive for correcting an error of any sort.

In the seclusion room, the patient should have diversions from the very start. Games, books, perhaps a slide projector, a television or record player under his control are all possibilities. Cut flowers and potted plants should decorate the room. Writing materials should of course be available, and if the patient has difficulty in writing, as some psychotic people do, he might be provided with chinagraph (grease) pencils and an ample supply of paper. Part of the wall might be processed for drawing. which people sometimes find pleasant when they are upset. Plasticine and paint should be provided. A way might also be devised for the patient to brew his own coffee or tea. A tape recorder could be provided to allow the patient to hear his own voice, and get accustomed to the fact that he really is there, though this should be handled with caution, because some people find it rather a disturbing experience.

All these measures must, of course, be combined with friendly interaction with a member of the hospital staff, one with whom the patient feels comfortable and can speak freely, but who, like the room itself, will keep him as close to reality as possible.

In brief, the seclusion room is ideally a place where the patient, after a rupture in interpersonal relation-ships, can re-assert his adultness and recover his poise, rather than a place of punishment where he is treated like an abandoned child in a dark cupboard or a bear in a pit.

(See link to original article for photo of music therapy session.)

*Dr. Donald Hebb, McGill University, conducted experiments in which the subject was placed on a bed in an air-conditioned box with arms and hands restrained with cardboard sleeves and eyes covered completely with translucent ski goggles. Hallucinations and delusions of various sorts developed, mostly in those who could stay longer than two days. Many subjects left at about twenty-four hours

http://journals.psychiatryonline.org/data/Journals/PSS/20510/18.pdf

Health, Poetry

Thoughts on DESIDERATA and More

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Desiderata
Desiderata

Desiderata

© Max Ehrmann 1927 ?

Go placidly amid the noise and haste, and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain and bitter;
for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.
Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery.
But let this not blind you to what virtue there is; many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.
Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be,
and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy.

 

 

 

“Desiderata” defined means things wanted or needed. A partial version of the poem hangs on the wall of the place where I will be staying for a while and while the piece is well-known, and indeed I have seen it before, the painted version here caught my eye and moved me. For some reason, however, I suspected that this particular version was a quotation only in part, so I looked up the entire poem. What I found struck me to tears.

 

Tears? Why?

 

Well, let me explain.

 

There are important lines that are missing in the poem on the wall here (important to me):

 

“You are a child of the universe, no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.”

 

Also this stanza is followed by the critical word, “Therefore…be at peace with God…” whereas on the wall, the “therefore” has been taken out. But what a difference it makes to keep it in.

 

The important thing to me in reading the poem in its entirety is that I do not feel I have a right to be here, do not feel I am in any sense “a child of the universe.” I feel instead that I have ruined the universe, and that if I had not been born the world would have been better off by far. That is one critical thing.

 

The other salient point the poet makes, which made me weep, was his belief, stated well before anyone thought about global warming, but presumably he would have said the same thing even so, if he truly had the courage of his convictions that “no doubt the universe is unfolding as it should.”

 

TO the contrary, it feels to me completely tragic that the world should be ending in our geologic time, that we should be living in the end days, not something that was meant to be or unfolding as it should. ( I say “end times” without any religious intention to those words, only the sense that we have brought about the end of the living world upon ourselves by over-consumption and massively pig-headed over-population.) Of course, the “universe” is much bigger than humanity or even generally speaking the living blue planet called earth, but as a human living on it I have no other way to feel or see but from my puny human perspective. To lose Life on earth, all or most of it at any rate, to global warming feels utterly devastating. Who or what gave humans the right to destroy what might have been the tiniest fraction of a chance at existence, life itself, to throw it all away through the over-consumption of fossil fuel (in the brief span of 2 centuries) and making too many babies, and eating too many cows?

 

It sickens me that I am so much at fault, that I ought not to have existed at all, that much of this could have been avoided by my never having been born. But it also sickens me that as a species, humans have collectively, since my birth, ignored all the consequences of our “eating the earth” and now we have no earth for our children’s children to inherit…

 

Vis a vis another line in the poem, I cannot “be gentle” with myself. I do not deserve gentleness! That way disaster lies!

 

“With all its sham, drudgery and broken dreams, it is still a beautiful world.” Maybe… But the world is fast losing its beauty and sometimes i think it is only beautiful to those wealthy enough to be able to willfully blind themselves to all the ugliness and injustice around them: blinding themselves to the dying oceans and all the starving homeless people…to name just two out of many.

 

Nevertheless, the poem is still a miracle of inspiration and remains so after nearly a century. Though not really new to me, it newly struck a chord, though I am sure that  people in the know would call it an “old chestnut” of a poem, nearly hackneyed and familiar as that other O.C., “Invictus”by William Ernest Henley, though I suggest Desiderata has always been far better written than Henley’s “chest-beater” of a poem (for all that it is a favorite of many thousands..).

Art, Health

Artwork in Progress and Red Rum Updated

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CLick to enlarge

Fear with Black Widow, In Restraints (Work in progress
Fear with Black Widow, In Restraints (Work in progress)
Red Rum in Red Room, or Why is that car scared of me...?
Red Rum in Red Room, or Why is that car scared of me…? (this is a lightened version of other painting)
Art, Health

Pencil Art done under Barbaric Conditions at Hospital of Central CT: Brutal Aversive Conditioning.

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CLICK ON THE PICTURES TO ENLARGE THEM.

 

There were few rewards for behavior that toed the line at New Britain General Hospital (HOCC). Mostly it was punishment. If I was found with even a stub of a forbidden pencil, I was carried off to the Supermax seclusion cell, stripped naked and left alone.

 

At that point, being teeth-chatteringly blue with cold, I would swat a nurse in such a way that she would feel assaulted and bring on the goon squad of “I want to hurt someone today” guards to put me in four point restraints.

 

Why would I induce this? Because then they would at least cover me up afterwards with the mercy of a sheet, for modesty not warmth mind you, and I would beg for a blanket in vain. But at least my body would be protected from head to toe from the blasts of the A/C up full bore, and I could rest after I had had screamed out my lungs and my despair for a lonely twenty minutes or more.

 

No one cared, no one heard or paid any attention. The doors were double, and the cell was utterly soundproof. NO one ever even knew I was locked in there. When my screaming was too heart-wrenching for the softer ones of the staff down the hall in the room where they had retired to, they simply turned down the monitor and intercom so they didn’t have to listen.

 

I know, because I heard when the telephone rang, telling the person sitting outside the inner door they could turn it back on now (after I had quieted down). This was brutality of the nth degree. But they always called it treatment for safety, though I mentioned the CMS regs to the security guards one day as they were inflicting their usual pain in order to bring me to the room, and they stopped in their tracks.

“You’re kidding,” one said, “Its true that the only legal reason for seclusion is Imminent Danger to self or others?” (I had been brought there for disturbing the peace…)

 

I nodded, Look it up. She looked gravely at the others. but proceeded o do what she had been ordered to do anyway. And I proceeded to behave in a wildly immodest and terrified fashion likewise…knowing I would be left alone and freezing for at least two to three hours, no matter how fast I calmed myself.

 

They didn’t care. it was PROTOCOL…

Angry at me, the doctor put me in Four point restraints the first day I was there, freezing cold and thirsty , in physical pain, and mute...No one responded to my plight.
Angry at me, possibly justifiably, for slamming the door on him (I had been brutally restrained and secluded in the ER for NO reason the night before) the doctor put me in four point restraints the first day I was there, freezing cold and thirsty , in physical pain, and mute…No one responded to my plight. This drawing picture got stained from my efforts to save it from the trash, because every time they put me in seclusion the nurses would tell Housekeeping to throw my art and journals away. “It ‘s just trash” they would tell the cleaning woman, even though I begged them to preserve my work. Finally I wised up and mailed out everything I wrote and drew to my friends on the outside. Also I should mention that my rage at Dr Balkunas stemmed from his walking in to my room and pointblank telling me he would not let me communicate with a pen and paper, and would not sit with me at all unless I spoke with him…so my  rage, both from the restraints the night before and his  brutal dismissal of me, just exploded.

 

 

 

 

 

 

No one could hear me or see me in the Supermax Seclusion Room, or so I felt..since no one ever communicated with me in my agony...
No one could hear me or see me in the Supermax Seclusion Room, or so I felt..since no one ever communicated with me  when I screamed in cold or pain…only to tell me to shut up or lie down.
This is what the voices really instructed me to do...
This is what the voices really instructed me to do…
The Behavioral Care Plan was so torturous that if I was found with even a magazine or a pencil stub I was put back to Square one, no matter how far I had come...this happened at least ten times in 3.5 weeks.
The Behavioral Care Plan was so torturous that if I was found with even a magazine or a pencil stub I was put back to Square one, no matter how far I had come…this happened at least ten times in 3.5 weeks.
They had a camera in my room, supposedly to monitor me all the time, so how did this happen? I thought they were telling me to do it!
They had a camera in my room, supposedly to monitor me all the time, so how did this happen? I thought they were telling me to do it! Nevertheless, all heads and backs are turned away from me, and the room is empty.but for the hospital bed, which could be conveniently used for four-point restraints and often was.
Health, Poetry

Hospital Of Central CT: Smearing Shit at W1: An Angry Poem but an Honest one.

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HOLY SHITE AND URINE TEAM

 

Her cool wordless RN face expresses nothing

as she scoops the ice cream turd  and quickly disinfects.

But I think for her, thinking, knowing this:

“Asshole, shithead, you think

your shit don’t stink…” While I have no working sense of smell,

I know I’m an unofficial pain in the ass here

because no one can be officially PIA

on a psychiatric ward, not even I, the wild shit smearer

who knows no disgust first hand

for not smelling it.

 

What I know well and sadly is

the consequences of disgusting others,

the distancing, the shunning,

how killing the ultimate loneliness is, double-locked away

in a soundproof seclusion cell.

Shackled naked into leather 4-point restraints, I shriek my soul away,

from the bottom of my lungs for 20 minutes straight.

The illegally silenced intercom remains dumb.

Even the 1:1 monitor positioned behind the door.

peering lazily  through the judas-eye of a small plexi-port-hole,

doesn’t really pay attention. Why bother, the shit smearer

gets what she deserves.

 

Oh, I know I disgust them, what with my out of control turd throwing

and my illegible scribbling with my feces on the wall

but they refuse me so much as a marker and board,

and they won’t sit down to listen when I speak.

Mute for 16 days, I will be heard now, one way or another.

But this is no way to think, and i think without thinking, just do with do do, mindlessly, enraged by trauma.

I foul myself because no one cares,

because their disgust is threaded, even so heat-felted with hatred

they have long forgotten I’m just another patient

with problems bigger than the shit I fling.

Instead, cucumber skinned nurses sneer their disgust,

Bad dog! Bad, bad dog!

 

But I know dog is just God spelled backwards.

And God created the living world

from dust and mud and excrement.

I am no god, I am Live backwards to Evil:

I create chaos from utter chaos within.

There are always turds to form and fling.

And in the end all they can do is kill me.

Fuck me! Do me a favor you turds, kill me!

But first, you have to silence the hate on your faces,

 clean the smeared walls,

and pretend I am nothing to you.

 

When you came in to take me down,

restrain me for any excuse, even for just wanting a blanket.

you had to breath in my shit, that fear,

and knew what it could do to you.

You’d heard the stories, deadly E-coli, C diff.

Something in me might kill you,

I don’t know what scared you more, my wildyelling

or my excrement.

 

That was always the struggle. Shit stinks. I stank.

You hated me for my smell. You feared me for what I did.

I know your fear. It was: what would happen if you

lost control of yourself.

Would you, control freaks,

too  dance naked in dung?

Health, Trauma

Hospital Of Central Connecticut’s Psychiatry Unit W-1: Dr Michael E. Balkunas

11 Comments

 

I understand now why Dr. Michael E. Balkunas, the psychiatrist at New Britain General Hospital (Hospital of Central Connecticut) W-1, general psychiatry, gave up on me. He decided, even after eliciting my brother’s opinion both from a professional and a personal standpoint, and Dr Angela’s equally professional opinion that I do not suffer from Borderline Personality Disorder, to diagnosis me secondarily as exhibiting that disorder.

 

Oh, he knew I had come in with an acute exacerbation of schizophrenia and that I had PTSD. He knew that I had in my electronic medical record documents stating from other psychiatrists that I do not and never did have any personality disorder, despite in-hospital “behaviors.” But I know why Dr Balkunas diagnosed one. He did it for the same reason the other hospitalist psychiatrists have done it in the past: 1) in order to justify the use of a Behavioral “Treatment” Plan that was tantamount to torture and 2) to excuse his liberal use of seclusion and restraints in instances when they went against all CMS regulatory guidelines. And 3) in order to dismiss me and call my behaviors “manipulative and devious” instead of taking me and what I said seriously.

 

 

I also suspect, for all the second shift RN Barbara’s telling me that Michael Balkunas MD is a caring man and “never gives up on a patient” that he DID in fact give up on me. In fact I suspect that he never really tried to deal with or treat me at all, that from the first time he resorted to seclusion and restraints, he knew he had opted to terminate any treatment alliance.

 

 

But how did I figure this out? Well, it isn’t as if there ever had been any kind of alliance between us. From the first day after he admitted me from the ER, when he came into my room while I was still mute, he just walked away, saying dismissively, “I won’t talk with you unless you speak.” Immediately I understood that this man was willing to jeopardize everything about me and about my treatment in order to assert his power.

 

 

The same thing came into play after I began speaking about a week later. Now the issue was that he would not speak to me, would not deal with me at all but would immediately leave the room if I became angry and spoke with anything resembling a raised voice. (Argh, this was so many shades of Amy Taylor MD at the Institute of Living last year! — and Dr Balkunas tortured me in similar ways with predictable ineffectiveness — but powerful people behave in predictable ways, right? It seems I must have threatened their sense of entitlement. Why else take it out on me? Who am I? I’m a big fat nobody! They could have ignored me or just treated and released me, like anyone else. But instead they did their damnedest to crush me and destroy me. Why? Because in the end, I think I must have triggered some underlying feelings of resentment and impotence in these two psychiatrists and you know you do not threaten to unearth the feelings of a psychiatrist, or at least not with Michael Balkunas MD or with Amy Taylor MD …)

 

I learned very quickly, but not quickly enough, that everything about the Hospital of Central Connecticut W-1 Unit at New Britain was about coercion and control. Not about trauma-informed, patient-centered care. I don’t know how other patients managed to be discharged from there within a few days, but it would never have been possible for me. Mostly because I was simply too out of control to BE controlled by people who used such methods to undermine any possible calm and stability I might have achieved in those early days. They did NOTHING to help me but take away the very coping methods and objects that might have helped me. They used the carrot-and-stick method liberally, but mostly they used sticks. The very fact that the ED staff had seen fit to seclude me, give me IM meds twice and also to four-point restrain me naked to a bed tells you something about the brutality that reigns supreme there.

 

You know the very first thing I did was give the ER and the W1 staff a Psychiatric Advanced Directive. It was supposed to help them to help me. But instead they seemed to resent my knowing myself, and wanting them to know how to help me. They reacted badly and worked against it in every way possible, instead helping me. It appeared to anger them that I knew myself, and instead of using it, they did everything in their power to abrogate each and every section of it, right up to the section where it asked them to notify my doctor and my brother when and if they used seclusion and/or restraints despite the warnings.

 

 

No one ever called anyone in each instance that they chose to restrain or seclude me, even though I begged them to verbally at the time as well, and this document, which was at the front of my chart all along, stated in no uncertain terms that I wanted both people to be notified.

 

 

It was the worst hospitalization I have ever had, and I say that having had many serious and difficult stays. I was not just a difficult patient, I was a pain in the ass, but this was a direct result of the trauma I experienced in the ED and immediately following it on the floor. If I had not been traumatized, on the unit and in the ED, I feel certain that my “behavior,” outrageous, “disgusting,” and out of control as it was, would never have been so damaged. But because everyone saw fit to go against everything advised in the PAD, and do everything they could to re-traumatize me– even after I had a conversation with a nurse about my three experiences with date rape, even after that, she decided to seclude me, involving the forcible removal of me from my room by brute guards who bodily threw me into a cell without any mean s of communication with the world — because of this, they got the regression and degeneration and worsening of symptoms that my PAD predicted would happen. What did they expect? That I would simply thank them?!

 

 

I realized, though, the Monday morning of the week he discharged me when he came into my room and asked me how I was doing, that Dr Balkunas, who “never gave up on a patient,” had given up on me. Now, my brother had indicated to him that the “kindness” Dr Balkunas was offering to me by means of involuntary commitment to CVH would be devastating and destructive to the max. I think “Balkie” had had to think about the wisdom of actually sending me there. So he also had to think about whether he actually had any tools at all to “fix me” or cure me as he had promised. Indeed he was no miracle worker and had never held out anything, NOTHING AT ALL, by way or therapy or treatment modalities beside commitment to the state hospital to help me…so without that threat he had nothing to offer me.

 

 

The man never once sat down and even talked to me calmly and caringly. I say this because when he sallied forth with his usual opening that Monday morning, How are you? (I had decided finally, with my brother’s encouragement to “play the game.”) I answered with the socially acceptable, “fake” answer, my game plan, not expecting any real psychiatrist worth his salt to accept it, but trying to “play the game” anyway, as I was desperate to be discharged. My answer?

 

“I’m fine, thank you. How are you?”

 

Balkunas really didn’t bat an eyelash, the completely social answer was good enough for him, because he had given up trying to help me. Indeed, he had never even tried. So he proceeded, “How are you eating?”

 

“Fine.”

 

“How are you sleeping?”

 

“Fine.”

 

“Well, if things continue this way and there are no meltdowns I think you can go home on Friday.”

 

 

There were indeed meltdowns, even the night before I was discharged I had a meltdown over my supper tray. But Dr B was not on the floor much and didn’t hear of those, and everyone was so sick of me that they didn’t write them up, knowing I was to go home. And I persisted in answering those three magic questions “correctly.” Socially, as I had been taught, against my will, years ago. He never asked me a single other thing, and never talked about anything else at all after that.

 

 

The day of discharge came, and the great and caring Dr. Michael Balkunas popped his head into the room. “How are you?”

 

 

“I’m fine thank you. How are you?”

 

“Okay, I will write your discharge papers now.”

 

 

The very minute he said that and turned to leave, I put my sunglasses back on, as I saw that taking them off a week prior had served its purpose and it mattered not whether I wore them from that point on or not. I still wear them today, to protect people from my evil…

 

 

Dr. Michael Balkunas may talk a great game about helping people but he has very few tools to do so and really it is all pretence. He has medications, which are by and large bogus (though he has been educated by Big Pharma for so long he fails to understand this), and he had commitment proceedings to the state hospital, unless he happens upon a millionaire family willing to spend on their family member. I was not one of those, nor worth it. CVH – for those who are not in the know, CVH—Connecticut Valley Hospital is the last state hospital and the only long term facility for adults on Medicaid in Connecticut – being sent there would have killed me and he and my brother both knew it.

 

 

The difference was that my bother was decent enough to care while Balkunas honestly thought it would be good for me to lose my life there. And that was his treatment? Bullshit. He was a bad doctor and despite the cant, he gave up on me to boot. Well, thank god he did.

 

 

But you know, I do not forgive his accepting my social “I am fine thank you. How are you” so easily. That was insulting. He was sick of me, and considered me willfully manipulative and devious, otherwise he would not have diagnosed me with the damning BPD diagnosis, which in his hospital means just that you are a PIA, no less and no more. But he might have at least pretended to be a psychiatrist and not just a social buddy. How are you? Fine thank you, How are you? What sort of answer is that? ON the other hand, if he had asked me, what could I have said? We both know I had to get out of there and there was nowhere to go but home. He was not interested in finding out how I was, in talking to me. Not from the first. All he wanted was to medicate me. Which he did. So fuck me. How are you, I am fine thank you how are you? And it wouldn’t have made a rat’s ass worth of difference if I had not been okay, which I wasn’t, so long as I said I was fine, thank you, how are you’

 

Like I said, it was a game. That was the name of it, Play the Game…

 

So fuck Michael Balkunas. He is worthless to me, and his add-on personality disorder diagnosis means less than a fig to me. He knew I had schizophrenia and PTSD. He knew the hospital was abusing me. He knows nothing about me, never spent more than 3 minutes with me on any given day. He knows nothing. And I don’t give a flying femtogram about HOCC (the former New Britain General Hospital) except insofar as they ought to ask me back to educate them and improve the situation vis a vis their abusive use of seclusion and restraints, not trauma-informed patient-centered care at all. However since even supposedly trained Nurse Manager Jessica came around to not objecting, and approving their use, I can see that it might be hopeless to do so. Willing though I would be.

 

 

Barbara, RN on the second shift. You alone were a lifesaver and a light in a dark tunnel. I wrote in the scraps of paper I called a journal of your kindnesses again and again, and I forgive your being blind to the cruelty of seclusion and restraints, because you have lived with that culture too long, You just need to be re-educated. But you saved my life. Had you not been on duty that weekend before I was discharged, I might not have calmed enough to say to Dr. Balkunas the socially acceptable “I-am-fine-thank-you-how-are- you” mantra that was the magic ticket out of there.

 

 

I know no one on W-1 remembers me with anything but relief that I am gone and a great deal of disgust and anger. Ditto for me. I still wake screaming from nightmares about the place and a great deal of anger that I don’t want to let go of. I want to hold onto it long enough to fix the situation of W1, before I forgive anyone. Then we will see.

 

 

But for now I am off to Vermont for six weeks to stay with relatives. I hope to heal. I hope I can heal…

 

 

Take care of yourself Barbara. You would do well to find a kinder and better place to work and train. I thank YOU for everything. I mean it when I say you saved my life and sanity.

 

 

Blessings on you alone, Barbara, the rest of you can FYandGTH.

 

 

Miss Wagner

Health, Schizophrenia

Amazingly Accurate Depiction of Voices and Paranoia…

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Health, Seclusion and Restraints

Article From New Haven Register On Connecticut’s Excessive Use of Restraints, With Full Commentary…

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http://www.nhregister.com/general-news/20140601/connecticut-hospitals-restrain-psychiatric-patients-at-double-national-average#comment-1424593756

FROM: THE NEW HAVEN REGISTER May 31, 2014

Connecticut hospitals restrain psychiatric patients at double national average

By Lisa Chedekel, Conn. Health I-Team Writer

POSTED: 05/31/14, 11:10 PM EDT | UPDATED: 1 WEEK AGO

2 COMMENTS

 

As Connecticut works to improve its mental health system, new federal data shows that hospitals in the state restrain psychiatric patients at more than double the average national rate, with elderly patients facing restraint at a rate seven times the national average.

 

 

In addition, the state lags behind in providing adequate post-discharge continuing care plans for psychiatric patients, especially teens and the elderly. Connecticut’s 28 inpatient psychiatric units and hospitals developed continuing-care plans for fewer than 70 percent of patients they discharged from October 2012 to March 2013 — indicating that thousands of patients may have left facilities without adequate treatment and medication plans.

 

 

A C-HIT analysis of the federal data, released by the Centers for Medicare & Medicaid Services for the first time, shows that Connecticut ranks in the top fourth of states (11th highest) in the use of physical restraints in inpatient psychiatric facilities — and is the third highest state in restraining patients 65 and older.

 

 

Two psychiatric units — at Bridgeport Hospital and Masonicare Health Center in Wallingford — have the 10th and 12th highest rates of restraint use, respectively, among the 1,753 psychiatric facilities nationwide that are included in the federal reports, which cover October 2012 through March 2013.

 

 

State and federal guidelines — tightened over the past 15 years, partly in reaction to deaths in Connecticut facilities — say that restraints should be used only in cases of imminent physical danger to a patient or others. They call for less restrictive interventions when patients are acting out aggressively.

 

 

But the data show that Bridgeport Hospital, Masonicare and three other Connecticut hospitals — Waterbury, Hartford, Danbury — restrain patients at more than triple the national rate.

 

 

James McGaughey, director of the state Office of Protection and Advocacy for Persons with Disabilities, said he was disturbed by both the high rate of restraint use and the low rate of post-discharge plans.

 

 

“The numbers are pretty compelling,” he said. “Some of our hospitals have done a significant amount of work on this, but clearly there’s more to be done.”

 

 

He suggested that the Department of Public Health, which oversees hospitals and is charged with reviewing annual reports of restraint and seclusion, should “get a little less timid in looking at this.” Hospitals rarely have been cited or penalized in recent years for improperly using restraints, a review of inspection reports shows.

 

 

McGaughey noted that the state-run Connecticut Valley Hospital in Middletown has pursued a reduction in restraints and seclusion that has cut its restraint rate significantly in the last five years. The new data show CVH’s rate at .52 hours per 1,000 patient hours — below the statewide rate of 1 hour per 1,000. The national average is .39.

 

 

“It’s ironic that our one remaining large state hospital has done such a good job of reducing restraint and seclusion, but you have some very different results at private institutions,” McGaughey said of CVH, which was cited for excessive restraint use in 2007 by the U.S. Justice Department. “What it shows is that it’s possible to address this issue, but you need leadership to effect this kind of culture change.”

 

 

Mental health advocates say seclusion and restraint should be avoided because they are traumatic and dangerous to patients and staff.

 

 

Alternatives include individualized aggression-management plans, the use of “comfort rooms” or time-out spaces, and one-on-one interventions. Among the innovations at CVH are 22 “comfort rooms,” designed to calm agitated patients, and a reduction in the time interval that a physician’s order of restraint or seclusion can remain in effect, according to a state report.

 

 

Yale-New Haven Hospital has a restraint rate of .36 hours per 1,000 patient hours — just below the national average of .39 hours. But its rate of developing care plans for discharged patients is relatively low — 50.36 percent, compared to a national average of 73.5 percent of cases.

 

 

Officials at Connecticut hospitals with high rates of restraint say they are working to reduce those incidents, and they stressed that even minimal mobility restrictions, such as soft wrist restraints or brief therapeutic holds, are counted in the federal numbers.

 

 

Robert Bernstein, executive director of the Bazelon Center for Mental Health Law, a national advocacy group that successfully sued Connecticut in 2006 to stop housing psychiatric patients in three nursing homes, said he worried that progress made in the early 2000s to reduce restraints might be slipping in some hospitals because of staff shortages and “pushback” from clinicians.

 

 

“Some of the procedures put in place may have been weakened, because it’s a lot of work” to use alternative interventions, he said.

 

 

Although patients subjected to improper restraint can file complaints, few speak out, Bernstein and others said. Among the exceptions in Connecticut is Pamela Spiro Wagner, a Wethersfield writer and artist with schizophrenia who has cycled in and out hospitals.

 

 

In an April “open letter” to the director of a Connecticut psychiatric hospital, Wagner readily conceded that she is a difficult patient — “easily roused to irritability and hostility” — but insisted that her behavior has not warranted her repeatedly being placed in restraints and seclusion, for hours at a time.

 

“Once you allow staff to use restraints a little, it only takes a little to use them a lot.”

 

 

 

CONNECTICUT VS. THE NATION

 

Nationally, the states with the highest restraint use are Minnesota, Washington, South Dakota, Tennessee and New Hampshire. For patients 65 and older, only Nevada and New Hampshire have rates higher than Connecticut, which restrains elderly patients at an average of 7.69 hours per 1,000 hours. Thirty-five states have rates of less than 1 per 1,000 hours; the national average is 1.01 hours per 1,000 hours.

 

 

The U.S. facility with the highest restraint rate is Park Ridge Health in North Carolina, which reports 722 hours of restraint use per 1,000 patient hours overall. Among facilities that report serving children ages 2 to 12, Lakeland Regional Medical Center in Florida has the highest restraint use, at 200 hours.

 

 

The federal data shows Connecticut psychiatric facilities fare well in some categories, including lower-than-average rates of restraint for children and teenagers. Five hospitals reported no use of restraints for any age group: Sharon, MidState Medical Center, Bristol, John Dempsey and Natchaug hospitals.

 

 

And Connecticut’s rate of keeping patients in seclusion is lower than the national average, with half of the state’s psychiatric facilities reporting that they did not use seclusion at all. Nationally, South Dakota, Montana and Washington report the highest use of seclusion, defined as involuntary confinement where a patient is prevented from leaving.

 

 

But the state’s over-65 restraint rate is fueled by excessive rates at Masonicare (35.99 hours), Bridgeport Hospital (37.92) and Hartford’s Institute of Living (9.19).

 

 

Officials at those hospitals say they have taken steps in the year since the data-reporting period ended to reduce restraint use.

 

 

This is the first time that quality measures from psychiatric facilities have been made available by CMS. The federal agency does not penalize facilities for high rates of restraint or inadequate discharge plans. Instead, an agency spokeswoman said, the public reporting is intended to encourage quality improvements and help consumers to make informed decisions.

 

 

At Bridgeport Hospital, Dr. Ryan O’Connell, vice president for performance and risk management, said the hospital’s geriatric psychiatric unit serves many patients with dementia and behavioral problems that cannot be managed in other facilities. About 18 months ago, he said, the hospital put in place an “action plan” to reduce restraints, including using “comfort” rooms. Also, in January, a new policy was implemented requiring that the nurse manager be called before any patient is restrained.

 

 

“We realized we were going in the wrong direction with restraints” and have since seen a “dramatic drop” in their usage, O’Connell said.

 

 

Hartford Hospital’s Institute of Living (IOL), which has a geriatric unit for complex dementia patients, has made similar changes over the past few years, nursing director Ellen Blair said. She said restraints are now rarely used, and only for patient safety. The IOL requires that a physician’s restraint order be reviewed every two hours, rather than every four, which is the standard of care.

 

 

“We look at our data every single day” to ensure that restraint and seclusion are being used only as “a last resort,” Blair said.

 

 

Masonicare’s acute psychiatric unit serves geriatric patients who frequently are referred because of difficult behaviors and aggression, said spokeswoman Margaret Steeves. When restraints are needed, the hospital uses “the least restrictive restraint, which is typically a seat belt,” she said. Masonicare has an interdisciplinary team reviewing restraint use.

 

 

Statewide, the Connecticut Hospital Association has been working with the state Department of Public Health to minimize the use of restraints, said Dr. Mary Cooper, the group’s vice president and chief quality officer. She said the new federal data “indicate that there is more work to be done in this area” and will help to identify best practices.

 

 

Nationally, the federal government tightened rules on the use of restraints and seclusion between 2001 and 2007, including time limits on physician orders and strict documentation requirements. The changes were prompted by a series in The Hartford Courant, “Deadly Restraint,” which documented restraint-related deaths in psychiatric facilities nationwide.

 

 

In 2007, the U.S. Department of Justice cited the state-run CVH for excessive overuse of unnecessary restraint and seclusion. Since then, policy and training initiatives have significantly reduced restraint episodes — from 26,290 hours in 2000, to 529 hours in 2012 — a state report shows.

 

 

State DPH spokesman Bill Gerrish said the agency collects restraint and seclusion reports from hospitals and works to “ensure that care is appropriate.”

 

 

 

LAGS IN DISCHARGE PLANNING

 

McGaughey and Bernstein said they were especially troubled by the failure of many hospitals to develop continuing care plans for discharged patients, and to transmit those plans to the next level of care.

 

 

Statewide, Connecticut facilities developed adequate discharge plans 69.4 percent of the time — lower than the national average of 73.5 percent. For teens, hospitals transmitted care plans only 55 percent of the time — lower than the national average of 74 percent — and for seniors, just 42.7 percent of the time, below the national average of 56 percent.

 

 

Discharged patients are supposed to receive care plans containing their diagnoses, reasons for hospitalization, medications and treatment recommendations.

 

 

The federal data shows that 10 Connecticut hospitals, including Waterbury Hospital, Masonicare and Yale-New Haven Hospital, properly transmitted care plans to the next provider in less than half of cases.

 

 

A few hospitals — St. Mary’s, Bristol, Norwalk, Natchaug Hospital and Southwest Connecticut Mental Health — transmitted care plans more than 90 percent of the time.

 

 

McGaughey said that without continuing care plans directing further treatment, many discharged patients may languish in nursing homes, shelters or land back in the hospital.

 

 

“The lack of continuity of care, to me, is a huge issue,” he said. “It’s a pretty brutal business — insurance companies want you to medicate and discharge as fast as possible. The question is, what happens after they’re out?”

 

 

Bernstein said the lack of attention to continuing care plans was “jaw-dropping.”

 

 

“Those numbers should be at 100 percent,” Bernstein said. “It’s shameful.”

 

 

Hospitals with low rates of discharge care plans blamed much of that lag on their failure to document that the paperwork was done.

 

 

At Masonicare, for example, Steeves said the 31.3 percent rate of developing care plans was due to problems with the “tracking of the discharge document . . . not that it wasn’t actually sent.”

 

 

This story was reported under a partnership with the Connecticut Health I-Team (www.c-hit.org).

 

 

COMMENT:

This is the comment that I posted online at the paper a few days after the article was published, (as it happened, while I was a patient being tortured at the former New Britain General Hospital, the present day, Hospital Of Central Connecticut).

 

Pamela Spiro Wagner: “As someone who has been subjected to more use of seclusion and four-point restraints over the past “decade of change” than in the two decades previous it boggles my mind that anyone would even dare to state that things are improving in CT mental health care institutions. During my nearly month-long captivity in the winter of 2013, the Institute of Living in Hartford regularly restrained me to a bed for as long as 19 hours at a time, without ever releasing me for so much as a bathroom break — I had to defecate in my clothing. I was not even released to eat. When I was not in four point restraints “for not following directions, I was in seclusion, which they called the “Quiet Room” and not seclusion, but by CMS definitions, it was seclusion as I was separated from the rest of the patient population by force, and was not permitted to leave the room I was isolated in.

The one time I did actually saunter away, walk down the hall to look out the window, and return to my non-seclusion Quiet Room, I was punished with immediate use of four point restraints, into which I was placed without a struggle, hoping that would make it easier to win my freedom. Alas, for me, there was no way to earn freedom from restraints I never “deserved.” The entire point was discipline, and that would last as long as the staff wanted me to be in shackles to learn my lesson. There was literally nothing I could do, –stay calm, sleep, quietly ask for release — nothing, until they were finally satisfied that I was submissive enough to obey their orders, some 6-19 hours later. But I had to cry Uncle, and submit to a set of degrading humiliating “debriefing questions” that assured them that I took responsibility for my own being restrained and that my behavior would henceforth conform to their norms.

I was surprised to see Natchaug Hospital being given good ratings of any sort. One of their chief psychiatrists on the Adult Unit, a longtime presence their Emeritus psychiatrist you might say, was so insouciant about this job as to be nearly incompetent, but probably hard to fire even for negligence. HIs name I will not mention. He routinely did drive-by visits with his patients– a wave in the hallway might not be a completely standard morning meeting, but it happened often enough that peatients knew that would be all of this doctor they would see for the day. He routinely discharged patients with GAF scores at or around 60, the highest “global assessment of functioning” that one can have and still be rated “disabled” — not because he knew this level of functioning to be the case, but because it made him and his psychiatric ministrations at Natchaug look good. After all, if person comes in with a GAF in the 20s, and barely able to function, and you discharge him or her a week or two and some drive-by counseling sessions later with a GAF of 60, you must be doing a terrific job, esp for a 75 year old doctor not too keen on using anything like trauma-informed or patient-centered care. I had never left a hospital before Natchaug with a GAF higher than 40, but suddenly I rated a 60….by a doctor with whom I never spoke.

Natchaug Hospital, when the nursing director was Sharon B Hinton, APRN, was a decent place, because she made certain that abuses like restraints and seclusion rarely to almost never happened under her watch. I know, because I was there about three times during her administration. I also knew her when she was Hartford Hospital’s psychiatric Head Nurse at CB-3, where she and her never failing humanity and respect for the dignity of every patient made all the difference in the world. I might have come from an abusive hospital in the early 90s, like University of Connecticut’s Dempsey Hospital, which in those days four-pointed people to an iron bedstead, by shackling them spreadeagled to the four corners of the bed, a stress position that is not just tantamount to but is in fact torture. But I would be rescued by someone finding me a bed at Hartford Hospital, where Sharon would discover me arriving there in tears and tell me, unfailingly,”Its not you, Pam, you did nothing wrong, It is the hospital that treats you badly…We don’t have any problem with you, because we treat you well and you respond to it. When they treat you with cruelty, you respond badly…That’s very normal.”

But as to Natchaug…Bravo if they have done away with restraints completely. They had not done so when I was there last in 2012. Nor with seclusion, which was imposed in mostly a disciplinary and arbitrary fashion. Largely it was used to force medication on loud obstreperous patients or for angry fed-up senior nurses to take out their peeves on patients they didn’t particularly like (e.g. me). I still remember one APRN demanding that I be dragged to locked seclusion, and left there alone (despite all Sharon’s previous assurances that such would NEVER happen, that someone would ALWAYS remain in that room with me if I ever ended up there.. Alas, Sharon had left by then, so rogue nurses like D could have their way…) and when I peed on the floor in panic, and took off my clothes they rushed in to take them away from me, and inject me with punishment drugs, then made me stay for an hour alone on the pee-soaked mats, freezing cold, pretending to sleep and calm myself just to convince them I could leave and not bother anyone. I managed to do so, or at least the APRN D. got over her fit of pique and finally released me, but I was not really calm, and when they finally draped two johnnies over my naked body so I could decently traverse the distance to my room, I left, disrobing as I went…Who gave a damn about my flabby flat behind? I certainly did not. And it served them right if everyone got an eyeful…served them right..

Natchaug’s biggest problem was and probably still is a lack of staff cohesiveness and bad morale between the staff nurses and the well-educated techs/mental health workers who were all very dedicated college grads but were treated like grunts…The MHW’s did most of the important patient contact, but were not trusted to write patient notes, or the notes they wrote were never read, or accorded any import. This was not just despicable but very unfortunate in more than one instance during my stay, as the notes they took personally might have saved me from some terrible misunderstandings and outrageous misdiagnoses that harmed me terribly..

Most places use techs who are trained by shadowing for a day or two, which means, badly trained, if at all…

You have to take all such in-hospital diagnoses with such a heavy grain of salt, you know, even when they are labeled with the words, “THIS IS A LEGAL DOCUMENT.” Because they get so much of fact-checkable, factual material garbled that you cannot believe a word it says. And as for diagnosis, well it is all of it opinion, one, and two, it depends largely upon whether you are a likable patient or a disliked one, what they finally say about you on any given day. No one should have that sort of power over another human being, frankly. And the idea that they can brand one for life with certain psychiatric diagnoses just sickens me.

Be that as it may, my recent last experience was beyond the beyond, at Hospital of Central Connecticut, The old New Britain General…and I expect to go back to talk to someone there about it. I always do And I have much to say to them, after the pain and rawness have worn off a little. They considered it SOP to strip me naked and leave me alone in a freezing seclusion cell without any access to human contact, unless they chose to speak to me over a loudspeaker hidden in the ceiling. If not, I was utterly abandoned, no contact or even view of another human being for as long as they wanted to keep me secluded. They also restrained me, having male security guards four-point me stark naked to the bed, before they had the decency to cover me with a light sheet, even though I begged for a blanket for warmth. (A nurse manager came in and shivered, saying “Brrr its cold in here!” but did they relent and let me have a blanket…No, clearly I was not human, didn’t need warmth.)

This is just the tip of the SR iceberg in CT in the current years, Remember this is happening right now, not ten years ago, or before the so-called reforms. Nothing is getting better. Things are worse than ever, And when you are a patient in these hospitals, you have no help, no recourse, anything and everything can be done to you and you have no way to refuse or say “no”. No one will help you, or offer assistance. They can just grab you and seclude you or restrain you without your having the power to stop them or any recourse to make them pause and reconsider. You are powerless to stop anything…And so they get away with it every time. And once it is done, who will fight for you? What lawyer will take your case if the guards hurt your shoulder rotator cuff, or bruise you up, or degrade or humiliate you? No one….so you are deprived of your human and civil rights, completely, but the hospital knows that no one cares enough to fight for you, so they get away with it each and every time, and they know this when they do it. They have nothing to worry about,….You are just another mental patient, a nobody, a nothing.

That’s what you are if you are diagnosed with schizophrenia and hospitalized in CT hospitals in 2014. A nobody that the hospitals can abuse with impunity and will. Just wait and see if any of this changes…I doubt it highly. They have no motivation to change. They don’t think they are doing anything wrong now.”