From the previous series editor
I first got to know of Alison not long after I was appointed as a Consultant Psychiatrist to an Early Intervention in Psychosis service in 2005. I was very keen to meet her as before that I did not know of any other person beside myself in such a post who had a psychodynamic training. It was a great relief and very exciting to find such a fine colleague with similar interests and ‘beliefs’ in the importance and relevance of psychodynamic understanding to psychosis. I was immediately impressed by her and I think I introduced her to ISPS UK and before long she was putting on a small ISPS UK conference in the North West of England drawing together a number of people who subsequently played an important part in ISPS UK, family members and members with experience of psychosis as well as professionals from different disciplines.
She subsequently organised a really memorable day bringing over the very talented Danish Psychiatrist Lars Thorgaard, not long before he passed away. Lars was brilliant in conveying how to make a therapeutic relationship with people experiencing psychosis and use psychodynamic understanding using everyday words and with such empathy.
Alison and I had a lot of contact when she took the lead in trying to get off the ground a ISPS UK national research programme in supportive psychoanalytic psychotherapy for psychosis, this time using the research experience of another talented Danish psychiatrist and psychoanalyst Bent Rosenbaum who led the Danish research project to publication with its encouraging results I was very impressed with Alison’s organisational skills, her firm but so friendly handling of the group of interested persons and getting through a full agenda and how much energy she put into this project and capacity to attend to the tedious detail of the applications. It was a big disappointment to us all that we got knocked back for all kinds of seemingly spurious reasons by research allocation committees and in the end we gave up.
During this time I was the editor of the ISPS book series and I had no hesitation in Alison being at the top of my list when I felt the time was approaching for me to find a successor. I was, of course, delighted when she accepted and agreed to work alongside me for a year or so before I stepped back; it is such a source of satisfaction to me to have started a project such as the ISPS book series and to be able to hand it on with such confidence as I had in Alison and to see its continuing development. It is my impression that her rigour brought the quality of the books to a new high standard and furthermore she took important initiatives in the book series in a) making sure that there was no automatic use of the word schizophrenia and b) developing rigorous guidelines in making sure that if clinical work was described that any person mentioned gave their permission for publication. Amongst others, books published under Alison’s editorship include Art Therapy for Psychosis, edited by Katherine Killick, and a book on personal experiences (in press).
Alongside the responsibility for editor ship and co-editorship of the books, Alison, Bent and myself wrote what we regarded as a series of important articles for psychiatrists to help to know about the psychodynamics of psychosis, how to make a formulation of problems related to psychosis and to demonstrate a supportive psychotherapy for psychosis. (Advances in Psychosis Advances in psychiatric treatment (2013), vol. 19, 124–131 doi: 10.1192/apt.bp.111.009126, https://pdfs.semanticscholar.org/b0c2/ae943e883cb3375c5f04816f024ab891ebb0.pdf https://www.cambridge.org/core/journals/advances-in-psychiatric-treatment/article/using-psychodynamic-principles-in-formulation-in-everyday-practice/9E26EFED1AEDB0228C0585DE98B71382
Alison realised that a psychodynamic formulation is of much greater value than attempting to be precise in psychiatric diagnosis. I remember the fun the two of us had at an ISPS International conference quite a few years ago, demonstrating the value of formulation utilising Freud’s Schreber case using masks for the key characters. How she had time to take on and be such an active leader of ISPS UK during this time is beyond imagination! More about this from Alf Gillham, below.
Last but not least, Alison took the lead in the organising committees for the ISPS international meeting in 2017 in Liverpool. My having had the similar role in 1997, the first time the UK organised an ISPS international meeting, I did not envy her taking on this role. The responsibility is enormous. Alison got a really good group to work together and ensure that the responsibilities were well shared out. I think an outstanding aspect of the organisation was the way in which Alison continued her determination to have experts by experience of psychosis and family members taking major areas of responsibility in the organisation and content of the meeting. For me this has been one of the biggest changes in ISPS in the last twenty years and in my view the Liverpool ISPS conference was the most successful yet in this respect.
Past Chair ISPS, previous ISPS book series editor
On behalf of the ISPS EC
I remember well first meeting Alison at the 50th anniversary conference of ISPS International. I attended on my 50th birthday as a present to myself, as I was so impressed with ISPS and its history. I immediately recognised a fellow soul, who felt the same way about ISPS, and that psychotherapy had much to offer the understanding of psychosis. We both joined ISPS-UK committee at the same time and went on to work together on many projects. When David Kennard stepped down as Chair Alison stepped up to the plate and helped navigate ISPS-UK through some very difficult times. ISPS has much to thank her for this (and David). Always caring and able to listen to all views of the committee, it became and still is a very welcoming family. I know that I consider her a close and valued friend as well as a colleague.
Our last big collaboration was when she chaired the committee that organised ISPS-INT International Conference. A huge undertaking, I somewhat blindly agreed to chair the group putting the programme together. I can honestly say that without Alisons skills with helping with this, the conference would not have taken place. It placed an enormous strain on her, and the success of the conference is due largely to her input. She has left ISPS-UK in the very capable hands of Akiko Hart, another special person. It’s great how ISPS attracts such people. We both step down from the committee soon, but it going from strength to strength, a strong legacy, and important family.
ISPS UK Executive Committee
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.