My world turned upside down in 2005 when my daughter, Alice*, nearly died from a very serious suicide attempt. “A very close shave” was what the hospital consultant told us in the Intensive Care Unit a couple of days later.
Less than four weeks earlier, following a long period of depression and suicidal thoughts, Alice had been prescribed antidepressants and sedatives by the local Crisis Resolution Home Treatment Team (CRHTT). Leaving her at home with me rather than opting for hospital admission, the team visited us almost every day to assess progress. During this time, Alice was experiencing distressing bodily sensations, such as feeling like her skin had turned to plastic and that her body was emitting unusual smells. After two weeks, a member of the mental health services team decided that these were signs of psychosis and gave her an antipsychotic drug.
We were given no explanation or choice about this, only a verbal promise that she would improve once the tablets “kicked in.” Although worried about the extra medication, we trusted them because we considered them to be the experts on mental health. How wrong we were!
Devastating Effects
The antipsychotic had a devastating effect on Alice. She became extremely distressed within half an hour of taking it, feeling even more confused while also becoming very quiet and withdrawn. Much later, she described the drug’s effects as like “being shot in the back of the head.” Over the next few days, Alice became visibly more sedated and stupefied, while I became much more anxious and worried. One morning she wandered out of the house at 8 a.m.; fortunately, I managed to persuade her to come back in. She told me much later that she had left to find a high building or bridge from which to jump because she felt so unwell. At that point, I had to lock the doors and was advised by one of the CRHTT team psychiatrists not to let her out on her own. So now Alice was virtually my prisoner! She was almost 24 years old at the time, but I didn’t think about the legal ramifications of this plan as I was more concerned about her safety.
Throughout these very difficult weeks at home, Alice kept asking to come off the medications, which she felt were not helping her at all. The team was reluctant to do this at first but agreed to do so eventually as she was clearly not responding well. However, they told us they were unable to start the tapering process yet as there was no psychiatrist available to supervise it. I think this was when Alice and I were both at our lowest point, somehow realizing not only that these medications were not going to help her but also that she would have to stay on them even longer than necessary, with no definite plan for when she could stop. It felt like a punishment. We were both exhausted and confused, but I sensed that Alice was feeling she had had enough.
A couple of days later, we received a visit from the team, during which Alice openly admitted she still felt suicidal. Shortly after they left, she went upstairs and managed to hang herself with a long woolen scarf tied to the third-floor stairway banister. Being on “high alert” and sensing that something was wrong, I managed to find her just in time to prevent her death.
The shocking, horrific experience is forever etched in my memory. It is a memory Alice would rather I did not have — of the day my daughter nearly died and could have become another suicide statistic. She explained much later that the medications were making her feel even more confused and anxious, and that she had felt compelled to do something to stop the unbearable sensations she was experiencing. She thought nobody knew what to do and believed her death was the only way to resolve her torment.
Growing Doubts
I believe that this initial experience led to my growing distrust of the mental health system. I was deeply traumatized and needing support myself. My feelings were complex, my thoughts confused, and my passion for justice aroused. Three months later, I lodged a formal complaint about the home treatment service because I wanted an explanation — for myself, and especially for Alice. I wanted to know why my daughter had nearly died under their so-called treatment plan. After filing my complaint, I took legal advice and was able to establish that the Home Treatment team was guilty on several counts. In particular, they had given Alice two medications — sertraline (an antidepressant) and respiriden (an antipsychotic) — that were likely to enhance her suicidal ideation, and therefore she should have been closely supervised in a hospital. The local Mental Health Trust settled out of court for a relatively small sum, but at least we had discovered the truth.
One week after leaving the Intensive Care Unit, Alice had been admitted to a mental hospital. Even then, she was given further psychiatric medications and offered no other treatment options. One such drug, an antipsychotic, began to affect her appetite immediately, increasing her usual weight from 140 lbs to over 200 lbs within six months. The fact that the drug had a major sedative component did not help. Alice has gained even more weight since then, leading to worries about possible diabetes, heart problems, and metabolic syndrome. These side effects are well-known and well-documented, but nobody in the mental health services seemed to think they were a problem!
Alice’s Attempts to Cope
Following the completion of her degree in textiles before her crisis, Alice had been actively seeking work. After the traumatic suicide attempt, hospital admissions, and adverse effects of the medications, she found life much more difficult. Her life seemed shattered and it took time and effort to pick up the pieces and find some sort of order again. Changing diagnoses and stigma added to her difficulty. Alice was at first given a diagnosis of depression with psychotic features. This was later altered to schizo-affective disorder and at various times she was labeled with other diagnoses, such as bipolar disorder.
Being assigned a diagnosis is a double-edged sword. Without it, a patient may not be able to claim benefits, yet the diagnosis itself can affect a person’s self-esteem, as mental illness carries a pervasive stigma, both in society and within the mental health services themselves. Some professionals emphasized to us that the “illness” was a long-term disability, which was not helpful. These psychiatrists were mostly interested in watching for symptoms that might indicate a relapse and advocated for long-term medication adherence. So where is the hope in that scenario? And how is one to live a life with some quality and meaning?
Alice made valiant efforts in her volunteer work and attended various courses, keeping in touch with friends and relatives. However, she found her moods continued to fluctuate and sometimes would experience a manic phase that led her into risky behavior, such as substance and alcohol abuse, predatory relationships with untrustworthy people, and a chaotic lifestyle — all of which was uncharacteristic of her and which she now greatly regrets.
The fact that she hasn’t achieved what she had hoped for when younger still leads her to have suicidal thoughts. Her lack of self-worth and confidence often causes her to become depressed, and she is easily triggered into panic attacks. Her energy levels fluctuate due to her continual problems with weight gain and exhaustion. The lack of good social engagement and a meaningful work life leaves Alice feeling very lonely most of the time. She sees her future as bleak and self-stigmatizes, tending to see her past as full of mistakes made by herself and others.
The Struggles of Caregiving
So what about me — a single, working parent suddenly transformed into a caregiver?
Although I was in a very distraught state of mind and on long-term sick leave during this period, I was still providing much-needed daily support to Alice both in the hospital and at home. I managed to access psychotherapy, which continued for 18 months; my GP also prescribed me sleeping pills to help block out the continuous flashbacks I experienced when trying to fall asleep at night. However, the mental health services had offered me nothing until I filed my complaint against them. Two very good friends stayed with me overnight on a rotating basis, helping me through those first few months. In all, I took a year off from my job as a social worker, returning part-time until I retired six months later.
I spent much of this time with Alice, helping her to adjust to life as a patient. About 18 months after her suicide attempt, she began to make some progress and felt able to reduce and then discontinue her antipsychotic medication. Unfortunately, some of her earlier symptoms of paranoia began to reappear and she was admitted into the hospital again for a couple of weeks while they trialed her on a new antipsychotic. Looking back, I think this was a mistake and the situation could have been overcome without the reintroduction of drugs.
I have since learned how symptoms can reappear when a person is withdrawing from these drugs. And I was shocked to learn that there are no official guidelines practitioners can use to help people through their withdrawal. Consequently, people like Alice often stop taking them abruptly and experience extreme withdrawal symptoms and, frequently, relapse — leading to further hospitalizations and even more drugs. This cycle leads to many patients being told by their GPs and psychiatrists that they need to remain on medication for life, as Alice was told when she asked to have her doses reduced and possibly withdrawn. Fortunately, there are now online resources explaining how to withdraw slowly and safely without medical supervision. Still, that is not an ideal solution.
Above all, I’ve learned that admission into a mental health ward is not always helpful for a vulnerable person in crisis, as other patients who use illegal drugs can easily influence them. Antipsychotic medication can increase a person’s vulnerability and lead them into more risk-taking behavior. This happened to my daughter, who became addicted to crack cocaine after another patient persuaded her to try it. I felt at a loss about what to do. The hospital environment was supposed to be safe, but this was not the case. By this time, my nerves were shredded and I began to think that all was lost. I spent a further six months after her hospital discharge helping Alice to get over her psychological addiction to the street drug. It took a lot of hard work on both our parts to overcome this extra dilemma.
Kept at Arm’s Length
After a while, I began to wonder how I would survive if I were to remain a sole caregiver for Alice. I had not anticipated how much the mental health services would rely on me in this role and how little they would support me in fulfilling it. I was frequently not consulted on any of their treatment plans, nor about the details of my daughter’s care. One helpful intervention, family therapy — for which I had to ask repeatedly — was eventually offered by a psychologist, who worked with us both together and separately. He was the only person who validated that my role as caregiver was a very difficult one. He was also able to give me advice on how to manage the task of being both mother and caregiver, which helped me on a practical level and allowed me to consider my own needs as well as my daughter’s.
This advice eventually led to my decision, in 2008, to move out of London to the healthier environment of a smaller city. I did wonder whether the mental health services might be better in a different area of the U.K. but was sadly mistaken. Despite my role as Alice’s caregiver, I continued to feel excluded from the mental health services’ decisions about her treatment. I began to realize that they regarded me as a necessary economic asset, but did not take me seriously as someone who could make a valid contribution to supporting my daughter’s mental health. The fact that I was questioning aspects of the services probably did not endear me to them. Also, the issue of patient confidentiality raised many conflicts for these professionals and made it difficult for caregivers and family members to work in partnership with them. Although necessary in some cases, I now believe that the mental health services sometimes use “confidentiality” as a smokescreen that allows them to exert exclusivity and power over patients and service users.
Seeking and Finding Alternatives
By this time, I had begun to wonder whether the treatment provided by mental health services was turning vulnerable and distressed people into long-term patients by introducing them to the same bio-medical model that had ill-served my daughter. I was keen to find alternatives to that model, so I joined a group looking to set up a Soteria House. I also began to attend conferences and read books about the anti-psychiatry movement. Over the next few years, I gained knowledge and confidence and became even more critical of the mental health services.
Meanwhile, my daughter was experiencing more psychotic episodes and I was becoming increasingly concerned about the adverse effects of her medication — both mental and physical. I was learning much more about the dangers of dependency on these drugs. I couldn’t understand why psychiatry continued to prescribe them while a growing body of research was showing how harmful the drugs can be, especially when used long-term. I began to realize that the majority of psychiatrists whom I encountered did not seem interested in any approach except the dominant medical model. Fortunately, I have since discovered some psychiatrists who are critical of the model and do wish to see changes.
Then, about five years ago, I heard about the Open Dialogue treatment for psychosis — a very successful system used in Finland over the past 25 years that relies very little on antipsychotic drugs. Substantial interest in this way of working has begun to grow and now training in Open Dialogue is available within a few National Health Service (NHS) Trusts in the UK. A large research study of the treatment is also taking place here. One of the NHS Trusts in London is providing a service, Dialogue First, for people who are not in crisis but wish to try an approach different from the usual mental health practices. My daughter and I are currently receiving these services. We have found the Dialogue First approach to be so humane and inclusive, as it embraces family members, friends, and people in their networks. Everyone is encouraged to contribute and the emphasis is on “being heard” and finding meaning rather than on receiving “treatment.”
It would have been so much more constructive to have had this kind of help 14 years ago, during Alice’s first crisis. It has become clearer during our Dialogue First sessions that much of Alice’s mental and emotional distress was caused by several life issues related to social, psychological, environmental, cultural, and identity-related challenges. I do not believe that it is a physical disease or simply a chemical imbalance that medication can cure. Life is much more complex than that.
However, it is a very long process to overcome 14 years of toxic medications, several hospital admissions, and the extremely traumatic experiences both Alice and I have suffered due to the lack of good mental health provision. I find it appalling that the mental health services continue to use medication as a first-line treatment when there is substantial evidence regarding its many adverse effects when taken long-term. These include the risks I noted above along with cognitive impairment, tardive dyskinesia, possible brain shrinkage, and early death. Who would want to receive such “treatment,” which appears to be doing so much more harm than good? But what other choices do we have? What do we do when we are on the threshold of a crisis when help is needed for people experiencing extreme emotional distress who are at risk of harm? When the situation has gone far beyond what I can do on my own and I am exhausted from lack of support?
Changing the Paradigm
I do not want to traumatize my daughter further by imposing a mental health “section” and more hospitalization plus more medications, but I cannot leave her to find her own way through her difficult journey. Living with this situation is terrifying, both for the patient/service user and for the caregiver, family, and friends. Too often, a crisis begins to escalate dramatically, no constructive help is available, and the situation escalates beyond our control. This is when I find myself “between a rock and a hard place.” This is when I would like to call on a service such as Open Dialogue, whose members I know would respond very quickly and provide a team that will assist and support my daughter and me through the crisis.
What can we do to change the way our mental health services are organized so that we can reduce our anxiety and fear, secure in the knowledge that when we ask for help, the services provided will not turn a crisis into a way of life for already distressed and vulnerable people? I don’t have an answer for everyone, only for myself. I am now a member of the Open Dialogue Champions, a small group of family members/caregivers who have experienced the benefit of working in an alternative way. Our mission is to promote Open Dialogue throughout the NHS in any way we can, helping to bring about a transformation that will stop the overuse of psychiatric medications and the enduring damage this form of treatment is currently doing to our family members, friends, and the wider society.
* Editor’s Note: Ruth’s daughter’s name has been changed to protect the latter’s privacy.
