A Sweeter Smelling Rose: Response to International Committee Dialogue Around a Name Change for Schizophrenia

The responses from the discussion among members of the International Committee were sent to the authors of the article, Bill George and Aadt Klijn. The following is their response.

A Sweeter Smelling Rose

By way of an answer Shakespeare wrote in his play Romeo and Juliet, “That which we call a rose by any other name would smell as sweet.” So if we were to find another name for schizophrenia, the same stigma would soon become attached to the new name, some fear. Let’s give two examples of the contrary.

In 2002, the Japanese established a name change for “schizophrenia” which led to much improvement. They changed the name Seishin Bunretsu Byo (mind-split disease) into Togo-Shitcho Sho (Integration Dysregulation Syndrome). Patients were more willing to accept treatment (medication and/or psychotherapy) and as a result there were less relapses and fewer suicides. There is an article about the Japanese experience by Mitsumoto Sato in the journal World Psychiatry (February 2006). It is important to notice that the lead-up to the name change consisted of an educational campaign about the “disease”; this will have given an opening for providing information also about factors on an individual level that could lead to a relapse and about how to cope with these stressors. Psycho-education is nowadays a key element in the modern treatment of schizophrenia.

Another example of a successful name change is of people who have Down Syndrome. Since the name change, they are much better accepted by society than before. Here too, the public were given helpful information and people with Down Syndrome got psycho-education about their condition and how to cope with it.

These two examples indicate that a change of name together with education of patients, family and society can be helpful. With this in mind, the Dutch patient organisation Anoiksis has begun a campaign to replace “schizophrenia” by Psychosis Susceptibility Syndrome (PSS). We are taking this opportunity to inform the public about what formerly “schizophrenia”, now Psychosis Susceptibility Syndrome, actually is; we need to put across the fact that the cases of unstable persons shooting innocent bystanders that reach the headlines are not typical.

Psychosis Susceptibility Syndrome (PSS) has in itself the advantage of being a more accurate name. It is more in line with modern scientific research, which has shown that schizophrenia is a syndrome rather than a single disease. Besides that, the term schizophrenia has been misleading; it has confused the illness with a condition in which people have a multiple personality.

Introducing a new, more modern, name for the disease gives us a fresh opportunity to create a better and more truthful image. We hope that the scientific debate about the name will reach the international public and get people in society talking about PSS and mental health in general. The name change also gives us the chance to facilitate person-to-person contact between patients and members of the general public as well as portraying people with the Psychosis Susceptibility Syndrome via the media. What have we done so far?

We have made a start by publishing an article in the Forum of the academic journal Psychological Medicine about the effect the label “schizophrenia” has on aggravating self-stigma in particular. This article induced comments by among others John Read, Richard Bentall and Jim van Os. We responded with a “Letter to the Editor: A sweeter smelling rose: a reply to our commentators” in the September (2013) edition of Psychological Medicine.

In order to reach the wider public we have given a self-disclosing interview to a Dutch national daily newspaper, Trouw (due Friday 27 September 2013).

We have also sent our proposal to GAMIAN-Europe. GAMIAN is the acronym for Global Alliance of Mental Illness Advocacy Networks and represents patient associations throughout Europe. At their September, 2013, General Assembly in Vilnius, Lithuania, they voted 21 in favour of discussing changing the name schizophrenia, 15 in favour of replacing it by the new name Psychosis Susceptibility Syndrome (PSS), and only 2 against changing the name. We are asking GAMIAN-Europe in turn to approach the World Health Organisation (WHO). We request the WHO to include the new name Psychosis Susceptibility Syndrome (PSS) in their International Classification of Diseases. ICD-11 is due to be published by 2015.

For further details visit:
http://www.stichtingklankborden.nl/wp-content/uploads/2013/08/pss-for-the-public.docx

Contact:
bill.george@planet.nl
http://www.anoiksis.nl/