Tag Archives: Psychiatric Hospital

Book Review: The Hospital by Barbara O’Hare

A few weeks ago, I heard about The Hospital by Barbara O’Hare in a foster care and inspirational memoir group on Facebook. I decided to check it out and it sounded great. Having been in a psychiatric hospital myself and having endured some controversial treatment there, somehow I was drawn to this book. Maybe it’s because I want to be reassured that it could’ve been worse. I don’t know.

Synopsis

“Nobody knew what was going on behind those doors. We were human toys. Just a piece of meat for someone to play with.”

Barbara O’Hare was just 12 when she was admitted to the psychiatric hospital, Aston Hall, in 1971. From a troubled home, she’d hoped she would find sanctuary there. But within hours, Barbara was tied down, drugged with sodium amytal – a truth-telling drug – and then abused by its head physician, Dr Kenneth Milner.

The terrifying drug experimentation and relentless abuse that lasted throughout her stay damaged her for life. But somehow, Barbara clung on to her inner strength and eventually found herself leading a campaign to demand answers for potentially hundreds of victims.

A shocking account of how vulnerable children were preyed upon by the doctor entrusted with their care, and why it must never happen again.

My Review

The story begins with Barbara’s early childhood memories of being abused by her Dad and step-Mom because of being a “dirty tinker”. The abuse unfortunately only continues oce Barbara is cared for by Edna, a woman renting her father’s house while he’s working off-shore. Barbara from there ends in a children’s home, where she tries to run away, so she’s placed in The Cedars, a locked children’s facility.

There, Dr. Milner meets her and tricks her into going into Aston Hall. Once there, she’s tied down, drugged and abused regularly throughout her eight-months-long stay. Barbara discovers that the other girls on her ward share two things with her: most come from The Cedars and all don’t know their biological mothers. What struck me as interesting was the dynamic between the girls while not in “treatment”. They were pretty typical girls, forming cliques and friendships and bullying one another.

When Barbara is on leave with her father and yet another of his girlfriends, she confides in them and they decide to get her out. They get Barbara into an approved boarding school, which is a lot better than the hospital but still very strict. Barbara yearns to meet her biological mother and tries to escape the school to find her. Her father than moves her to a girls’ hostel, where she is free to go as she pleases. She eventually goes on a search for her mother, which ends in disappointment.

I must say that it’s not too clear throughout the book how the hospital affects Barbara long-term. She does explain in a chapter about her ongoing PTSD symptoms and risk-taking behavior (possible dysregulation from complex PTSD).

Most people in the Facebook group said that they didn’t like the ending of the book. I had no problem with it though. I mean, I didn’t feel Barbara’s appreciation of her father was all that warranted given his early abuse of her, but then again he did get her to escape Aston Hall.

Overall, I really loved the book. It was a pretty fast-paced read and I finished it within a few days.

Rating: five out of five stars.

Book Details

Title: The Hospital: How I Survived the Secret Child Experiments at Aston Hall
Author: Barbara O’Hare
Publisher: Blink Publishing
Publication Date: Feburary 9, 2017

How Far I’ve Come

Today, in a complex PTSD support group, a member shared her story of hope and healing to lift other members up. I was inspired to share mine. Not that I’m as successful as she is, but I’ve come a long way on my healing journey especially given how deeply troubled I was several years ago. Regular readers will know most of this already, but I’m still going to share where I’ve come from and how far I’ve come so far.

In 2007, I started university in Nijmegen. I didn’t really want to go to university, but I felt I had to because my parents expected me to. I felt I had to live up to their expectations or I wouldn’t be worth much and would not have anyone to support me. My parents had instilled in me that I wasn’t wired for relationships, so if they decided to abandon me, I’d have no-one left.

Two months in and I crashed. I was so dysregulated and suicidal that I had to be admitted to a mental hospital. The psychiatrist who admitted me felt I needed supported housing. We searched for this for many years, but no place wanted me.

Meanwhile, the other half and I started dating. This could’ve given me some hope that I may in fact be able to develop social and even romantic relationships and wouldn’t be dependent on my parents for the rest of my life. You see, despite the fact that my parents only ever visited the hospital to argue with my treatment team, I was still heavily emotionally dependent on them. I still felt I needed their approval to be able to have any sort of meaningful life.

That changed around late 2010 to early 2011. The other half had proposed to me in June of 2010. I was diagnosed with dissociative identity disorder and PTSD in late 2010. Finally finding a treatment provider who believed me and realizing the other half was here to stick by me, gave me the strength to stick up for myself.

I still had many setbacks in the years that followed. I changed hospitals and my new psychologist didn’t believe I had DID/PTSD. The next psychologist even removed my autism diagnosis that I’d had for many years. She diagnosed me with dependent personality disorder, not because I was passive and compliant, but because I was too assertive, claiming care she felt I didn’t need.

In early 2017, I finally found the determination and courage to fight like a lioness for what I need. I sought an independent second opinion on my diagnosis. I started the process of finding suitable support, eventually enlisting the Center for Consultation and Expertise. I started to realize that I’m not just the crazy one in my family. In fact, even though no-one has a diagnosis other than me, I’m pretty sure my entire family has fallen a bit off their rocker. I finally realized (though I still don’t fully feel it) that the trauma I endured wasn’t my fault.

These strong parts of me are still a bit split off from the core of me, but that’s okay. Ultimately, I will hopefully learn to synthesize their qualities with the ones of the weaker or smaller ones. I don’t need to become “one”, but I hope I can someday live as the whole person, made up of all these parts, that I am.

Issues Surrounding Psychiatric Medication

Yesterday, Lydia of On The Borderline wrote an interesting piece on the stigma surrounding psychiatric medications and opioids for chronic pain. Today, I am going to add my own two cents to the conversation on meds.

Like Lydia says, many people, including patients, fear that psychiatric medications will change the person taking them, turning them into a zombie. I must say there is some truth to this. However, it’s hard to tell whether the medication is at fault or it’s the person’s illness. For example, as regular readers know, I spent a long time in a psychiatric hospital, including on a long-term care unit. Most people there have severee, treatment-resistant schizophrenia spectrum disorders. Most people who fall into this category were indeed heavily sedated and could be seen as “zombies”. However, the term “zombie” is a rather derogatory term for any human being, mentally ill or not.

When I started medication in 2007, I was indeed afraid of the antipsychotic I got prescribed turning me into a “zombie”. I was on a low dose of an atypical antipsychotic (which seem less sedative than classic antipsychotics) and it didn’t sedate me that much. It did keep me somewhat calmer than I was without medication, though I still felt pretty much as miserable.

This brings me to another issue that I touched upon in my comment on Lydia’s post: medications aren’t there for behavioral management. Okay, that may not be entirely true, in that severely aggressive people may benefit from medication for behavioral management if nothing else works. However, it’s a last resort and care must be taken to assess whether the patient actually feels better or they’re just too drugged up to make their feelings known. In this sense I, being a former long-term psychiatric hospital patient given medication for behavior control, have a different perspective to Lydia. She, after all, seemed to assume in her post that it’s stigma that keeps people from taking medications that could make them feel better.

Not that this didn’t happen in my own case, but in a different respect. I was taught in my years in inpatient psychiatric treatment, that medication is pure behavior control and how I felt didn’t matter. This not only got me to take medications I feel I didn’t need, but it also kept me from getting medications I did need. This is the case with my antidepressant. I was finally diagnosed with recurrent, moderate major depression in 2017 when I sought a second opinion on my diagnosis. I’ve probably been suffering depression off and on since at least age ten, but it was masked by my challenging behavior. Because I with good reason didn’t expect anyone to care about my mood if it wans’t bothering the staff, I was never treated for depression while in the hospital. Finally, earlier this year, I got a psychiatrist’s appointment to discuss my mood and was prescribed a higher dose of my antidepressant. (I had already been put on an antidepressant several years earlier, but don’t ask me why.) It seems to be working now.

The Five Most Significant Events

Oh my, why can’t I seem to write when I truly want to? I mean, I feel uninspired, but then again I have a lot of collections of writing prompts. I have at least three eBooks full of writing prompts, a few collections downloaded from the Internet and even an app on my phone. From this app, Paperblanks, comes the prompt I’m going to journal on today. The prompt asks me to name the five most significant events of the first 25 years of my life.

This is going to be really hard, as I’m supposed to name just five. The last nearly seven years do not count, so I cannot mention the day I finally left the psychiatric institution or even the day I got married. I am however more tempted to write on more recent events, whereas my childhood was important too. I just don’t remember it that well.

1. The day I came home from the NICU, September 29, 1986. The first one, hence, is going to be one I have zero memory of but that shaped me for the rest of my life. After all, if I’d not made it home from the hospital at three months of age, I may not have been alive or able to share my story today. I came home on my due date.

2. The day I started in special education, May 11, 1992. I had to leave Kindergarten at a mainstream school before the year was over. Till this day, I don’t know why. My parents claim that the reason I had to transfer to the school for the visually impaired is my need to learn Braille, which I didn’t get to learn until more than a year later. They also say my Kindergarten teacher wouldn’t be able to move to first grade with me and no other teacher could teach me. However, then why did I have to leave so suddenly? In my memory, I was ill shortly before leaving the mainstream school, but I don’t know what that has to do with it, if anything.

3. The day I started back in mainstream secondary education, August 25, 1999. This day is significant because it shows my ability to be determined. A lot of people say I’m not determined at all and give up way too easily, but I did complete the full six years of my level of secondary education even though I hated it. I don’t think my parents deserve all the credits for this.

4. The day I started in rehabilitation for my blindness, August 22, 2005. This day is significant because it symbolizes my self-direction. It was the first time I decided I wanted to work on my own goals rather than those set forth for me by my parents.

5. The day of my admission to the mental hospital, November 3, 2007. Do I really need to explain? This day symbolizes my ultimate break-away from my parents’ power over me. Even though those 9 1/2 years in the institution weren’t too productive, I don’t regret having agreed to be admitted at all.

DIY Daddy

Keys: My Time on a Locked Psychiatric Unit #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge of random reflections. The letter K is really hard for me. It was everytime I did this challenge. Somehow, each word that comes to mind starting with K doesn’t seem right. For example, the 397 journal writing prompts and ideas eBook says “Kindness”. In the A to Z of me I chose “Kids”, but I wrote about my childless life already. Now that I write this, something pops up in my mind. In 2016, when I did the A to Z of mental health, I posted among other things about “Keys”. Today, I am picking up this word and reflecting on my sixteen months on a locked psychiatric unit.

It was never intended by the psychiatrist who admitted me to hospital in 2007 that I go to the locked ward at all. However, the open ward was full at the time of my urgent admission, so I was placed on the locked ward. This was in my parents’ city and I only was there for a week-end. When I was transferred to my own city, I wasn’t even told what unit I’d be placed on, but I ended up on one of the two locked units. It was the “least restrictive” locked unit, which didn’t have real isolation rooms. It did have time-out rooms in which you could be locked up, which aren’t much better.

Two weeks into my stay, my doctor informed me that I could in his opinion transition to the open unit. He however soon made up his mind, as I had terrible meltdowns. This was in fact what kept me on the locked unit for sixteen months, because the open resocialization unit initially didn’t want me.

For the first three months of my hospital stay, I had almost no privileges, which meant that I could only leave the unit accompanied by an adult. These three months were a long time, considering that most people don’t even spend that long in a psychiatric hospital. In the grand scheme of things though, it sounds like a very short time. Within a month from getting some unaccompanied off-ward privileges, I had full privileges and they were never restricted again.

I didn’t really mind being on a locked unit, but it’s still pretty strange. I mean, now that I live independently, I still struggle to leave the house without someone else even to sit in the garden. This is in part due to my terrible orientation and mobility skills, but it may also be a form of continued institutionalization syndrome.

I’m Officially Home!: The Road to My Discharge from the Mental Institution

It’s official: I am home. Yesterday was my formal discharge date from the institution. It would’ve been May 1, but got delayed one week because I needed more time to make arrangements for my after care. Today, I’ll share my journey to getting the care I need and living in the house I want to live in with the man I want to live with.

Like I said, my original discharge date was May 1. However, a week before that, nothing had been arranged in the way of after care yet. I’d have my first appointment with a psychiatrist from the community treatment team that Friday, April 28. That was all my psychologist said she was required to do in terms of making sure I am in care once discharged. Apparently, she and the social worker had deliberately handed me the responsibility of making sure I’d have day activities and home support, only without telling me I had been handed that responsibility. I didn’t find out about this till April 26, when I had my “exit meeting”, as my psychologist called it. Call me a cynic, but I immediately thought of the Swiss end-of-life clinic by the name of Exit.

After my “exit meeting”, I was very much in distress. I called the patient advocacy person, but she couldn’t do anything for me, as I’d be in the community team’s hands. I called my husband, who was on the road. Desperate, I called my mother-in-law. She asked for my psychologist’s number and somehow convinced her to give me that extra week. It was suggested to me that all it’d take to make sure I’d have day activities was a phone call to the day activity place manager, who was on vacation during the last week of April and would be back May 2. It wasn’t exactly that simple, but in the end it was close to that simple indeed.

On April 28, I had my intake interview with the community treatment team psychiatrist and nurse practitioner. They were much more supportive than anyone in the institution had ever appeared to be upon first meeting them. I suspect this psychiatrist has never worked for a long-term care unit, as she was surprised I didn’t get any therapy there other than day activities. “But it’s a psychiatric hospital,” she said. There she nailed the reason I’ve called it an institution for years: there is very little in the way of actual psychiatric treatment. In fact, a student nurse at one point referred to clozapine, the last-resort antipsychotic the majority of the patients on my unit take, as palliative care. I know for some people it’s a miracle drug, but for many on my unit, all it did was keep them just about stable enough that they could handle an unlocked door.

Like I said, my meeting with the community psychiatrist and nurse practitioner went well. We discussed my symptoms and needs. They would be contacting the home support team, which is with the mental health agency, on my behalf. If no day activities had been arranged by May 12, when I’d have my next appointment, they would also work their arses off to get me day activities.

Last Thursday, May 4, I had appointments at two day activity places. One is for traumatic or acquired brain injury survivors, while the other is for people with an intellectual disability. I had my doubts regarding the first one, which I’d visited in August of last year. This was only confirmed when I went back for an intake interview. It was all very formal. Though this could’ve been because I had already visited the place, it made me feel a little unwelcome. When I disclosed I was also going to look at the other place, the staff at the first place said this might be more suitable indeed. I’d still be welcome at the brain injury place. However, I felt there was too little I could do independently enough there.

I had a taxi drive me to the other day activity place. When I opened the door, some clients welcomed me. They found a staff member, who seated me in a spare room and poured me a cup of coffee while I was waiting for the head staffer to come see me. I talked to him and to one of the staff at the group I’d be placed in. The “orange group” is a group of relatively capable intellectually disabled people who do simple manual labor tasks like packaging, sorting etc. Fortunately, there is no pressure to be quick or do it perfectly. I was a little worried the tasks would be incredibly boring and too difficult at the same time, but I realized it’d either be this or no day activities. Besides, the staff and other clients were very enthusaistic and welcoming. It looked like I might actually have day activities right after my discharge.

Yesterday, however, I had a meeting with the social consultant in charge of my case. The day activity place had already made all arrangements so that I could start “working” there and in fact, yesterday morning I was awoken by the taxi driver ready to drive me there. I had clrearly told the day activity staff that I’d first meet with the social consultant and start “working” on Tuesday, not Monday. For a bit, as I met with the social consultant, it seemed as though it’d all been one big mistake and I wouldn’t be able to start day activities today. However, late in the evening, I received an E-mail from her saying she had pre-approved me for day activities and I could in fact start “working” today.

Diagnonsense, Oh Diagnonsense!

A few months ago, I wrote about my changing diagnosis. My autism diagnosis that’s been confirmed three times since 2007, was removed. That left me with just borderline personality disorder (BPD) as a diagnosis. If you thought I gracefully accepted this, you do not know me. I consulted with the patient liaison person at my institution, who recommended I seek a second opinion at another hospital. Now, three months on and we’re back at square one, and it’s not because an independent provider agreed with my psychologist.

On August 15, I talked to the patient liaison person, who on that same day E-mailed my psychologist asking her to make the necessary arrangements for me to get a second opinion. Instead, my psychologist told me she wanted to contact a psychiatrist at the brain injury unit first to inquire about the diagnosis of autism in people with brain injury. This doctor told her that indeed autism shouldn’t be diagnosed in people with brain injury, but the same is true of BPD. My psychologist would need to diagnose personality change due to a general medical conditon instead. I stupidly agreed with her changing my diagnosis herself rather than sending me to an independent psychiatrist or clinical psychologist.

My psychiatrist, who is the head clinician responsible for my care, however, disagreed with my psychologist’s diagnosis. My named nurse said they were throwing around all sorts of diagnoses at my treatment plan meeting last month. Eventually, my psychologist informed me they’d settled on dependent personality disorder, borderline personality disorder traits and a developmental disorder NOS. I hate the DPD label, but can see how I might have some of its features. I needed to see my treatment plan to see what they’d meant with developmental disorder NOS, which isn’t a diagnostic code in DSM-IV unless prefixed by “pervasive”. That would essentially mean autism. As it turned out, they hadn’t settled on this diagnosis, as the developmental disorder was gone.

Instead, I now have DPD, BPD traits and depressive disorder NOS. I asked my psychologist whether this was a coding typeo, but it wasn’t. Her explanation was that I may formally meet the criteria for this, but the main reason for the diagnosis is for insurance purposes. You see, I can’t be in the mental hospital without a diagnosis on axis I (anything that isn’t a personality disorder). A nurse even twisted my psychologist’s actions like she’d done me a favor.

Last week, when I found out my final diagnosis, I lost it pretty much and was considering checking myself out of the institution. My psychologist was called, because the nurses thought I said I was definitely leaving, which I can’t remember having said. My psychologist encouraged me to leave right then, which I refused. My husband instead came to pick me up thee nxt day for a night at home to have some distance.

Today, I spoke to the patient liaison person again. She was not happy at the fact that my psychologist had failed to cooperate with me in getting me a second opinion. This essentially means we’re back at where we started and I’m probably going to ask my psychologist to get me a second opinion again soon.

R – #AtoZChallenge on Mental Health

Welcome to the #AtoZChallenge on mental health, day 18. Today’s letter is R. Enjoy.

Recovery

Recovery is the patient-led process of learning to live a fulfilling life with or beyond one’s mental illness. It may mean overcoming one’s mental health problems, but recovery is also for people with lifelong mental illness. It is related to rehabilitation, which I’ll discuss below, but recovery is led by patients.

Like I said when discussing experience and jobs, I have participated in a recovery group. In these groups, people discuss different topics related to getting their lives on track. For example, we discuss sources of support, pitfalls in our recovery, our relation with our treatment providers, etc.

Rehabilitation

Rehablitation is the staff-led process of helping patients live a meaningful life with or beyond their mental illness. Rehabilitation has the patients’ wishes in mind but still is led by staff. It is a common belief, and I’m not entirely sure whether this is correct or not, tht rehabilitation is linked to resocialization, which I’ll discuss hereafter. As such, a patient’s wishes might only be the focus of staff support if they flow towards independence.

Resocialization

Resocialization is the process of going back to a less restrictive treatment setting or back into the community after institutional treatment. It may also refer to independence-focused training in general. Resocialization units in psychiatric hospitals usually allow patients to stay there for a specific time period, usually two years. Rehabilitation units in long-term care may be focused on further independence too, but they have more flexible guidelines on how long a person can stay there.

Restraint

Restraint is the physical, mechanical or chemical restriction of a person’s movement. Holding someone down or tying someone onto a bed are often recognized as restraint, but giving a person a high dose of an antipsychotic or benzodiazepine to tranquilize them is a form of restraint too. Restraint, like seclusion, can only be used to avert the patient being a danger to themself or others. In the Netherlands, mechanical restriants are hardly ever used in psychiatric hospitals. They were up till recently commonly used in nursing homes on patients with dementia who run a risk of falling, but I believe regulations have changed on this. Chemical restraints are still used, though not as often here as in other countries.

Q – #AtoZChallenge on Mental Health

Welcome to the letter Q post in the #AtoZChallenge on mental health. This letter was hard at first, but I still came up with a few words. Here goes.

Quality of Care

Quality of care is important mainly to health insurers. That is, it’s not necessarily the real quality of care that’s importnat but how it’s documented in paperwork. As such, we often get patient satisfaction questionnaires. I think they’re worthless. So is the endless stream of paperwork staff have to complete to justify the care they provide. After all, the more staff have to deal with paperwork and patient satisfaction questionnaires, the less they can actually do the real work of care.

Quality of Life

Another loaded term which is used to assess people’s satisfaction with their lives. We get this scale called the Manchester Short Assessment of Qualty of Life questionnaire four times a year. I laugh at the randomness of questions. Like, inbetween questios about your satisfaction with friendships, your financial situation and such is the question whether you’ve been accused of a crime within the past year.

Seriously though, quality of life assessments have real impact on care and policies. For example, if a lot of people treated in a certain way for a certain condition have a very poor quality of life post-treatment, this treatment is unlikely to be used often in the future.

Quiet Room

The “quiet room” or “time-out” is an euphemism for seclusion or the isolation room. Many survivors of forced psychiatric treatment report very traumatic experiences with the “quiet room”. Others find it helpful when they’re severely disturbed, because they can scream there. I have mixed experiences. When I was still on a locked unit, it was often used as a threat to “give me back my responsibility for my behavior”. Seclusion cannot legally be used in this way in the Netherlands; its only purpose can be to avert danger. Now that I’m on an open unit, however, I find sometimes when I’m in crisis that it helps to have me in seclusion for a while.

P – #AtoZChallenge on Mental Health

Welcome to day 16 in the #AtoZChallenge on mental health. Todays’letter is P. There ae many obvious mental health terms starting with P, but also some you may not know.

Privileges

Privileges are what freedom of independence and movement someone has while in the mental hospital. In Believarexic, the book by J.J. Johnson I read a few months ago, the main character rightfully says that what are called privileges in the mental hospital are basic rights in the real world. For example, every adut in the real world is allowed to shower independently, whereas some people in mental hospitals need to do such basic tasks under staff supervision.

Of course, restrictions to someone’s freedom even in the mental hospital need to be motivated. If a person isn’t a danger to themself or others, they should really be allowed to go wherever they want unless this is a hindrance to their treatment. What I mean by this is of course even a person with full privileges should show up for their treatment appointments. Usually, even people with full privileges need to ask for permission from their clinician to leave the hospital overnight.

Psychiatrist

A psychiatrist is a medical doctor specializing in mental illnesses. NOwadays, they’re commonly seen as human pill dispensers, because prescribing medication is their primary task. However, in the Netherlands every psychiatrist is also a qualified psychotherapist. A psychiatrist is usualy a person’s head clinician. Head clinicians are the only ones who can open diagnosis-treatment combinations in the Netherlands. Diagnosis-treatment combination is insurance lingo for the patient’s diagnosis and the treatment that is suited to that diagnosis according to protocols. As such, a head clinician is the only one who can change a patient’s formal diagnosis. By the way, clinical psychologists and psychotherapists can also be head clinicians.

Psychologist

Psychologists do most of the talk therapy part of mental health treatment. There are three levels of psychologists employed by mental health agencies in the Netherlands. Basic psychologists are fresh out of college with a Master’s degree in psychology. We have a basic psychologist employed at my unit but I’m clueless as to what his duties are. Anyone can call themself a psychologist. Then there is the health care psychologist, which is in fact a protected title. Only someone who has completed two years of additional trainign after college and is licensed can call themself a health care psychologist. This is the most common type of psychologists employed by mental health agencies. They can do basic psychotherapy but cannot be head clinicians. Last are cliniical psychologists, who’ve got two more years of specialized training and many also have a Ph.D. These people can be head clinicians and do more specialized psychotherapy too. Clinical psychologists are often assigned to the more complex cases. My unit currently does not employ a clinical psychologist.

Psychotherapy

There are many forms of psychotherapy, both individual and in a group. Psychotherapy usually employs talking to help the patient recover, though some psychotherapies are partly non-verbal too. In many countries, the term psychotherapist can be used by anyone who so desires. Not so in the Netheraldns: psychotherapists are psychologists who’ve had I believe it’s four years of training in psychotherapy techniques. They are bound by the same laws as doctors and health care and clinical psychologists. A psychiatrist is registered separately as a physician and as a psychotherapist. As such, they can lose one license but keep the other. I once read about a psychiatrist who mostly practised psychotherapy and due to abuse of power lost his license, but only his physician license at first.