ISPS Australia – Compassion in Psychosis Conference, 24th March 2018 Lived Experience, Conference Highlights
Amanda: this was my first ISPS AU conference, and to be there from the beginning of the dream, be involved in the planning and delivery, and be there in person was such a rewarding and worthwhile journey. Being able to witness all our work as a board come to fruition was rewarding. A highlight was that through promotion of the conference, more people got to learn about us and we have been able to welcome new members.
I really loved the idea of creating a conference space open for all to come together; different clinicians as well as both individuals and family members with a lived experience, and everyone feeling they had an equal place. Through my own circles I had promoted ISPS AU and the conference, inviting and encouraging lived experience colleagues to attend and present, so it was lovely to see so many familiar faces present. I particularly enjoyed hearing from such a diverse group of people about the power of compassion and how useful it has been both personally and professionally in their lives.
Another highlight for me was co presenting a workshop on Compassionate Listening through Peer Supported Open Dialogue. I left feeling I had been professionally nourished with an increased sense of hope for the future.
I found value in the Compassion Focussed Therapy workshop as I was instantly able to apply the theory of the circles, due to their power and simplicity, into my own practice facilitating Hearing Voices Groups. Also, as a result of both the training and the conference, I noticed my own compassionate circle has strengthened and grown. Applying the compassion focused therapy approach enabled me to say ‘yes’ when asked to use my own lived experience live on radio; what also helped during the interview was the presenter/journalist, Lyn Malcom’s real, authentic, respectful approach, which felt like ‘compassionate journalism’ at its best.
Lived Experience Board Member Perspective
A highlight of the conference for me was being among others who are interested in compassionate approaches.
Lyn: A highlight of the conference for me was being among others who are interested in compassionate approaches. I am all too often reminded of the lack of compassion I often felt when using services and how wonderful it is to know that people like Paul Gilbert, Charlie and so many other clinicians and peers are deeply interested in compassionate approaches. The conference theme struck me on a personal level too, and I was reminded of the fact that learning to allow compassion in was lifesaving for me; historically, I have been my own worst enemy with my inner critic being amplified via a voice I called ‘the annihilator’, which says it all I guess. When I finally invented my ‘compassionate interpreter’, it has changed my life and kick-started my recovery, and so listening to all the different presentations at the conference did my heart good for sure. This is the message I would love to see get out there as I strongly believe more as self-compassion is key.
The other part of the conference which was great was the in-between session chats I had with people I know, those I am getting to know, some folk I had heard of or seen in emails, as well as new people too. Another layer which was very special for me was getting to spend time with my colleagues on the board. We meet and do the work or managing ISPS via Skype and email over the years and so getting together in person not only deepened our connection, the flow on effect of it is good for ISPS Australia too. I have nothing but appreciation to our fellow ISPS Au Board Directors for their contribution to us making this fabulous conference come to fruition and also the stewardship of our chair Dr Melissa Connell who led this process.
Lived Experience Board Member Perspective
This conference exceeded my expectations. A keynote presentation by Dr Eleanor Longden and Dr Charlie Heriot-Maitland was absolutely exceptional and truly inspiring. This story needs to be heard by all professionals aspiring to or already working in mental health. It is also very important for all medical staff from medical school to the grave.
The additional keynote by Matt Ball telling the story of a mental health professional’s experience of the system was again inspiring and informative. All the workshops were informative, thought provoking and practically helpful. To close the day with another inspirational and articulate talk from an expert in lived experience Debra Lampshire, was a fitting tribute to a conference that was truly passionate about enabling recovery from those experiencing extreme states such as psychosis. ISPS continues to deliver and credit should be given to the Australian Chair Dr Melissa Connell.
Dr David Ward
Director of Adolescent Psychiatry, Metro North Mental Health – RBWH
My petition to the World Health Organization and the American Psychiatric Association, now has about 6,150 signatures. I would like to thank every person who signed onto this petition. I am hoping to reach 20,000 signatures before sending it into the WHO and APA. So please if you have not signed, consider signing, and if you support this petition could you please circulate it widely to colleagues, friends, and on social media venues: such as listserves, FB pages, Twitter, etc.
The diagnosis of “schizophrenia” is still based on “expert opinion,” there are no biomarkers, genetic or neuroimaging tests which contribute to arriving at a diagnosis. The biological changes observed in “schizophrenia” are non-specific and lacking the sensitivity required to make a diagnosis. As I pointed out in the mid-1990s and to the present, the neurobiological and biological changes observed in persons diagnosed with “schizophrenia” are often non-specific, and overlap significantly with the biological changes observed in persons with early life stress (including prenatal stress), chronic stress, adverse childhood experiences (ACEs), social isolation/social defeat, neglect, etc., including the new emphasis on inflammation and neural connectivity. There is also the confound of antipsychotic agents which are now known to cause some atrophy of neural tissue as well as being cytotoxic to the endothelial cells that comprise the blood brain barrier.
Importantly, my concern with the term “shizophrenia” is that it is highly stigmatizing. There is research showing that if people with this diagnosis believe others know of it, the result is impaired communication (probably due to stress, anxiety and anticipated fears of rejection and the resulting loneliness). The aspects of dangerousness and non-recoverability seem hardwired into the diagnosis in the minds of the public, media and press and in many clinicians as well, despite strong evidence to the contrary. There is also research indicating that the fear of stigma can trigger “relapses” in some individuals. Psychoanalyst Heinz Kohut sugggested that the universal fear of becoming mad may be rooted in a fear of losing the resonance and support from the social-relational surround.
Recently, Henderson and Gronholm (2018) in their article “Mental health stigma as a ‘wicked problem’: The need to address stigma in psychiatry and and consider the consequences,” published in the International Journal of Environmental Research and Public Health, called attention to the significant social problem of stigma and the need for more comprehensive approaches to reducing it.
Park (2016) in his article“Trends in Renaming the Korean Terms for Psychiatry, Schizophrenia, and Epilepsy” published in Acta Psychopathologica, noted:
“… the Korean term for schizophrenia was renamed from jung-shin-bun-yeol-byung (literally meaning ‘mind splitting disorder’) to jo-hyeon-byung (attunement disorder) in 2011 by Korean Neuropsychiatric Association and Korean Society of Schizophrenia Research in order to reduce the stigma of patients with schizophrenia in South Korea. Jung shin- bun-yeol-byung denotes the Korean pronunciation of seshin-bunretsu-byo, which was approved as the formal translation for schizophrenia, in 1937 by Japanese Society of Psychiatry and Neurology. In 2002, seshin-bunretsu-byo was changed to togo-shitcho-sho (literally meaning ‘integration disorder’).”
Neil Petersen (2016), in discussing the reasons for dropping the term “schizophrenia” in Japan, noted: “For most people in Japan, the term then used for schizophrenia, Seishin Bunretsu Byo (“mind-split-disease”) implied an untreatable disorder that people never recovered from and that made people violent and dangerous. The term was also associated with a legacy of inhumane laws present for much of the twentieth century that stripped those diagnosed with schizophrenia of their legal rights and often resulted in them being confined indefinitely in isolation.The connotations of the term made it hard for doctors to discuss the diagnosis with their patients. In 1999, about half of all psychiatrists in the Japanese Society of Psychiatry and Neurology (JSPN) revealed a diagnosis of schizophrenia to their patients only occasionally. A mere seven percent told all their patients about the diagnosis as a rule…So JSPN decided to rename the disorder…Starting in late 2002, schizophrenia became known as Togo Shitcho Sho (“integration disorder”) in Japan.Over the next few months, the new term spread rapidly through the psychiatric profession. Within seven months, 78 percent of psychiatrists in Japan were using it… Thirteen months out, 86 percent of doctors surveyed said they found it easier to communicate with their patients using the new term… In 2002, 36.7 percent of patients were informed about their schizophrenia diagnosis. In 2003, that number was 65.0, and in 2004 it was 69.7.The changes weren’t limited to the psychiatric profession. The new term also started to work its way into the general public, and into the media. In the ensuing decade-and-a-half, the image of schizophrenia in Japan has started to shed some of the historical weight burdening it down.This year, a team led by researchers from the University of Tokyo analyzed 4677 articles about schizophrenia. They found that the portion of articles portraying people with schizophrenia as dangerous and threatening increased until the name change, then started to decrease…Words can carry deeply layered historical associations, and if we’re serious about spreading mental health awareness, we have to keep that in mind.”
Finally, I have been reviewing the responses of persons around the globe to my petition. I thought it would be helpful to include a sample of the many posted replies:
“The category is outmoded and there are far more useful ways to understand extreme distress and suffering.”
“I’m signing because this label causes deep psychological damage to those individuals obliged to carry it and because anyway there is no disease in the first place, to be thus labelled.”
“I think this is a term which is reductionist in it’s creation and continued use, and while ignoring external reality, other people and events, it treats those it labels as self contained “disease” processes obliged to accept the definition without question or complain.”
“When I started work in the psychiatric services , a senior psychiatrist told me that the term schizophrenia was just a coverall name for a great variety of symptoms that we did not understand and that soon it would fall out of use. He was half right; nearly 50 years later, we are still using it, with insufficient knowledge.”
“Stigmatizing and offers no hope; low expectations of recovery in the US. When someone is told they have “schizophrenia”, they are also told they will need medication and disability for the rest of their lives. Then the medication given actually destroys brain function. Wish we had Open Dialogue available in the US like they have in Lapland, Finland.”
“Bleuler’s neologism is loco parentheses [loco parentis is a legal doctrine describing a relationship similar to that of a parent to a child].”
“For years I didn’t want to wake up in the mornings because I felt so bad. This was partly because I suffered so much from the schizophrenia label.”
“The life of a hearing voices person is bad enough without the stigma of such labelling.”
“Schizophrenia is a poor and almost useless term for some very reasonable experiences to trauma e.g. voice hearing. It does not help understand the person or the content of their experiences; it does not help the individual to be labelled as schizophrenic due to self-stigmatisation processes; the misconception of what the “diagnosis” means is still a contributing factor of public stigma. There needs to be a focus on discussing and describing experiences, not mythical and erroneous concepts of “symptoms”.”
My petition to the WHO and APA can be accessed at the following websites:
Spanish translation thanks to Ana Sofia Rodriquez from Mexico:
Brian Koehler PhD, MS
ISPS US member
New York University & TC, Columbia University 411 Lafayette Street #641
New York NY 10003 646.722.7402
The ISPS series of books illuminates the efficacy of psychological approaches in the treatment of psychoses.
Written by ISPS members around the globe, these volumes reflect the compassionate and enlightened treatment patients worldwide are receiving.
ISPS members receive a 20% discount when ordering through Routledge
Some of the books will be controversial and certainly our aim is to develop and change current practice in some countries. Other books will also promote the ideas of clinicians and researchers well known in some countries but not familiar to others. Our overall intention is to encourage the dissemination of existing knowledge and ideas, promote healthy debate, and encourage more research in a most important field whose secrets almost certainly do not all reside in the neurosciences.
There are over 20 books published in the series. Some books have been translated into Chinese, Italian, Russian, Spanish and/or Swedish.