What's in a Name? International Committee Dialogue Around a Name Change for Schizophrenia

Oren Derhy, a member of the International Committee from the Israeli Psychiatric Rehabilitation Association (ISPRA), sent the article, “A modern name for schizophrenia (PSS) would diminish self-stigma” to International Committee contact list and received a number of comments sparking a vigorous discussion. The article, by Bill George and Aadt Klijn, members of Anoksis, the Dutch association of and for people with a susceptibility to psychosis, was published in Psychological Medicine (no. 43, 2013) by Cambridge University Press.

Anoksis posits that the diagnosis of Schizophrenia carries enormous stigma, which hinders self-acceptance. In their view, the name “schizophrenia” is out of date and out of touch with modern science since people can participate in society more easily than a century ago. Also, the old name suggests a split personality, which has nothing to do with the potentially psychotic condition. 

A competition was conducted in 2009 for a new name and currently, Anoksis is campaigning internationally for Psychosis Susceptibility Syndrome (PSS):

Psychosis: Covers the unreality of both hallucinations and delusions.
Susceptibility: A person with schizophrenia is in many cases not psychotic all the time.
Syndrome: Includes the negative and cognitive symptoms that are significant elements of this whole complex condition.

Japan apparently played the first card in 1993 by rejecting Seishin Bunretsu Byo (split mind) for Togo-Shitcho Sho (integration dysregulation syndrome). The result was positive acceptance of the diagnosis with better adherence and less relapse, patients were more willing to seek help, less suicides, indicating that patients had a healthier self-image and less self-stigma. 

The following are the responses that we received from the International Committee membership:   

“Just getting the conversation started on the pros and cons of the designation of “Schizophrenia” and its affects on those affected and the understanding of those unaffected would be a valuable initiative.” - Shaheen Ahmed (introducing PSR into Pakistan)

“I remembered when the name of schizophrenia was changed in Japan.  I worked at a psychiatric hospital, and one day we were taught to use a new name.  I understand how words or terminology can change assumptions or dialogue.  However, I also see this issue as an indicator how much stigma we still have when we have to consider so much of the name.  But I do think Togo-Shitcho Sho (integration dysregulation syndrome) is better than Bunretsu Byo (split mind).” - Motoaki Komiya

“In 2009, Jim van Os, a professor of psychiatry first recommended Salience Syndrome but the contest sponsored by Anoidsis  replaced  Dr. Os’ recommendation with Psychosis Susceptibility Syndrome (PSS). There was some public support for the new name but the new name did not appear is psychiatric text books and had no international impact. Currently, a discussion is going on in the Netherlands at the Mental Health Group at Linked In, with the question, “do you support our new name for schizophrenia PSS (Psychosis Susceptibility Syndrome)?  This is in the context of countering stigma and self-stigma.” - Lies Korevaar of the Hanze University in Groningen, Netherlands

“I think this is a very worthwhile pursuit. The very name schizophrenia carries with it so much negative baggage. I lend my support to this effort and would be happy to introduce the idea to stakeholders and consumers of course. PSS sounds reasonable so far.” - Adrienne Sheff of the San Fernando Mental Health Center in California and the Psychiatric Rehabilitation Association (PRA)

“I fully agree with the intent (of the change in name), and think it could make an enormous impact on the current stereotype that the disorder has.  The challenge is to come up with a term which is accurately descriptive enough, yet not too wordy, while attempting to reflect our current understanding of the disorder and taking the risk that that term may be made obsolescent by the next wave of genetic/neurological research.  I’m not sure if the Japanese or Dutch have found the most useful term, by no means a condemnation, but great that they’ve started the ball rolling.” - Veronica Carey of Drexel University and Chair of the Academy of Psychiatric Rehabilitation and Recovery of PRA

“I have really mixed feelings about this. A name change can help, but if you do not deal with the underlying belief structure, the old stigma just reattaches to the new name.  One problem that we have with behavioral health diagnoses is that they have limited construct validity and awful moderate and long term predictive validity. It is harder to name “it” when the “it” is so ill defined.” - Tony Zipple of Seven Counties Services in Louisville, Kentucky and member of PRA

“I agree with Tony – a new name may be a start but won’t eradicate stigma.” - Marianne Farkas of Boston University, the World Association of Psychosocial Rehabilitation (WAPR) and PRA 

“Thank you for sharing your thoughts. I feel that giving a Name to something is an act that makes us feel more relaxed by the illusion that we can define it or understand it.  Mental illness is a great example of something we cannot understand and define it easily or at all. That’s why I think in a way that dealing with changing a name is missing the point somehow and even gives an extra meaning and focus to the name itself.  Though changing a name also can create exactly the opposite result by sending a message that things are changing and not as solid as we tend to think sometimes. I assume there is not a right thing to do and it depends on each individual and environment. As to the specific name PSS, I don’t like the word psychosis and feel it is a word with its own stigma.”  - Oren Derhy from ISPRA in Israel 

“I think changing the name is worthwhile pursuing, this is something that would take a long time and I do agree that the root of the cause is stigma.  I agree with Oren that PSS (using the word Psychosis) is also quite stigmatizing and loaded.  And the term psychiatrics would be less stigmatizing.” - Adrienne Sheff in response to Oren

“Great dialogue so far everyone. I don’t think we really have a choice. As in all things, change is going to happen, good or bad. I liken this issue to change in the use of the word “developmentally delayed” rather than “retarded,” or “woman” instead of “girl or broad.”  It’s true that prejudice doesn’t change quickly however, we’ve seen the changes that have come about simply by increasing people’s awareness of the issues and expecting changes in attitude to follow the change of the word. I say let’s move forward and look at a change. It’s one of the ways we can shake things up.  We know nothing will change if we keep the name.” - Ru Tauro of the International Center for Clubhouse Development and PSR/RPS Canada

“I agree with Ru. There is an opportunity here to shed misperceptions, assumptions and stigma associated with the current term. The change itself would provide an opportunity to re-educate and re-orient and perhaps address the issues of construct validity. Such a change in terminology wouldn’t be a panacea in itself but could well support positive change that is part of an iterative process/ approach.” - Chris Higgins of the Ministry of Health in Ontario Canada 

“I believe that names can influence the attitudes of the community but even more of the staff working in mental health services. But the name change does not produce the expected effect if it is not accompanied by an ongoing engagement to train, supervision and support practitioners for their behavior change in everyday practice against people with mental illness and their families.  And to do this, there is a strong need of motivated and committed leadership. Since the seventies, the term “vulnerability” is been often used in place of schizophrenia because it sounds not conveying the idea of “incurability” but only the need to counteract individual’s weakness with enhanced strengths, but its meaning must be well explained to person and his family and this implies the appropriate knowledge and ability by staff.  And these are skills that aren’t acquired through a name change. I think this is one of the biggest challenges to avoid the risk of putting old wine in new bottles.” - Paola Carroza of  Italy

This truly international dialogue was incredibly exciting, reflecting viewpoints from all over the world and representing different cultures and world views, but with a common interest in the topic of changing the name of Schizophrenia!  If you have additional comments on this controversial topic, please feel free to send them to our Co-Chairs, Sue Carr at Sue.Carr@sympatico.ca or Carolyn Peterson at carolynpeterson@bvu.net.