World Mental Health Day 2014 LIVING WITH SCHIZOPHRENIA 1 TABLE OF CONTENTS FOREWORD .................................................3 SECTION IV G Christodoulou RECOVERY IS POSSIBLE .....................................28 L Patt Franciosi Finding Recovery with Schizophrenia ........................28 Janet Paleo SECTION I The Importance of Holistic Care for ............................29 LIVING WITH SCHIZOPHRENIA .......................6 People Living with Schizophrenia What is Schizophrenia? ...............................................6 G Ivbijaro, D Goldberg, H Parmentier Schizophrenia: L Kolkiewicz, M Riba, R Fradgley It’s still pretty much what it used to be .....................7 A Khan J. Geller Personal Stories ............................................................8 SECTION V Janet Meagher TIME TO ACT ...........................................................33 Bill MacPhee Living a Healthy Life with Schizophrenia ..................33 David Crepaz-Keay World Health Organization Living Beyond Schizophrenia – ..................................37 SECTION II Recovery Is Possible HEALTH PROMOTION & William Anthony PREVENTION IN SCHIZOPHRENIA .................12 Call to Action ................................................................38 Health Promotion in Schizophrenia ............................12 N Christodoulou, D Bhugra Schizophrenia and Social Inclusion .............................15 SECTION VI J Bowis WORLD OF THANKS ............................................39 The Role of Government and Civil Society in ............16 Person-Centered Care for Schizophrenia J Mezzich SECTION III INTERVENTIONS ....................................................18 Early Interventions in Schizophrenia ..........................18 P McGorry Psychological Interventions in Schizophrenia ...........20 P Garety, T Edwards Computer-Assisted Therapy for Persecutory .............22 Voices Unresponsive to Medication: An Effective Solution J Leff Co-Morbidity and Schizophrenia: Physical Health ....23 in People Living with Schizophrenia – the Facts H Millar, M Abou-Saleh The Importance of Carers in Living .............................26 with Schizophrenia WFMH/Hill & Knowlton Caregiver Fact Sheet ...................................................27 2 FOREWORD “Living with schizophrenia”, the theme we chose for the in which it is clinically expressed, the resulting difficulties in 2014 Mental Health Day, can be approached from a variety of detecting and diagnosing it, the risks associated with it, the perspectives. Let me mention some. difficulty of patients and relatives in coming to terms with it, Who lives with schizophrenia? First of all, the people who suffer the social stigma attached to it, the discrimination experienced from it. It does not matter whether it is an illness or a disorder, by the sufferers, the difficulties in rehabilitation and social re- whether you call it schizophrenia or integration dysfunction, integration, the problems in adherence to and compliance with whether you refer to the people who suffer from it as patients, treatment. We also know that the management of persons with service users or consumers. What matters is that they suffer from schizophrenia has been very bad in the past and is still bad in it to an unbelievable degree and that the rest of us who are many parts of the world and that there have been dark periods lucky to have escaped from it have a moral obligation to show in the history of humanity during which the patients have solidarity and help. We must not forget two things. First, that been mistreated and ridiculed. Additionally, we know that in it is within our philanthropic, advocacy, professional and social practically all parts of the world a great proportion of patients do roles to do that and, second, that no one is immune to mental not receive treatment at all. illness including ourselves and our families. By helping people Fortunately, during the 1950s, modern psychopharmacology with schizophrenia and by promoting prevention, treatment and developed novel effective medication and the community mental research into this condition we help ourselves. health movement appeared. These two developments increased Some people, even professionals, believe that schizophrenia the therapeutic potential and contributed immensely to more expands the spectrum of human experience; it may even bring humane treatment of patients. De-institutionalization (chronic people closer to spirituality. They believe that persons with this patients living in the community instead of institutions) became disorder have historically initiated new religions and spiritual possible and occupational rehabilitation was implemented movements, they have opened new paths in the perception of in a number of patients. Today the treatment of people with the essence and the scope of living, and they have developed schizophrenia is more person-centered, more collaborative and novel philosophical theories. This is true, they can certainly do more effective. Acceptance and implementation of concepts all these things, but not to a greater extent than non-sufferers. like positive mental health, recovery and resilience have had What really differentiates them from other human beings is the a decisive influence on the mentality of professionals and the degree of psychological pain they experience, an intense, long- public. A very positive development was that the patients have lasting and often unbearable pain. A measure of the intensity been empowered and have developed a voice of their own and and persistence of this pain is the self-destructive potential of the the capacity to decide about their future in an autonomous way. patient. The pain is coupled with a perception of social isolation Autonomy is now a key word in the ethics guidelines of most produced by the stigma attached to persons with schizophrenia mental health professional ethics codes, and although there are and the resulting institutional way of treatment that still prevails cultural differentiations the trend is towards the direction of its in many parts of the world. universal acceptance. So, the main categories of people who “live with schizophrenia” Advocates and advocacy organizations like the World Federation are the patients themselves. There are, however, others who for Mental Health also live with schizophrenia, in a sense. They also live with it. These are the family members, the carers. They try to identify with the patients, to feel their needs, to side with also have to live with this disorder, they know it well, they know them. The key word is EMPATHY. Advocacy organizations have its manifestations and they usually know how they can co-exist an important role to fulfil and this role is to strive for improved with it. The help from the family is usually superior to even the patient care and defend the patient’s rights. One of the most best hospital or community facilities, especially in certain family- realistic goals of advocacy groups is to underline to politicians centered cultures. Yet, there is a price to pay for this. And this and the public that care for the mentally ill is cost-effective. is the impact of schizophrenia on the health of family members This is the language that politicians understand. Lastly, ‘’ Living and carers. The burden of schizophrenia also falls on them. with Schizophrenia” has yet another perspective if we think of the effect of this illness on the general population, that is, on Professionals also “live with schizophrenia”. Some of us have SOCIETY as a whole. Society also lives with schizophrenia. dealt with this illness all of our working lives. We know the early signs and symptoms, the multiple and changeable ways 3 FOREWORD (continued) The response of society to people with schizophrenic illness has Schizophrenia has been characterized by some (for example not always been kind. If we think of the way in which mental the UK Schizophrenia Commission) as “the abandoned illness”. patients, and particularly patients with this diagnosis, have been This is probably a hyperbolic statement but underlines the need treated in medieval times and are still being treated to-day in to pay more attention to this disorder and to the people who certain cultures, it will not be difficult to realize that in spite of experience it. Focused research, advocacy, funding of mental the progress noted in the last years much more has to be done. health services (at least to the level of funding for physical Stigma and discrimination play an important role in the shaping health), integration of persons with schizophrenia into society, of the attitudes of society towards mental illness and towards opportunities for occupational rehabilitation, diminishing of the persons who experience it. stigma and discrimination, safeguarding the human rights of In conclusion, the people who “live with schizophrenia” people with this illness—these are some of the actions that belong to various categories—consumers, carers, professionals, should be taken. This collection of papers represents one of the advocates and society as a whole. It is the dynamic collaboration contributions of the WFMH to the effort. and synergism between these groups (“Working together for I wish to express my thanks to the WFMH Executive Committee, mental health”) that will make “Living with Schizophrenia” to our World Mental Health Day Committee (chaired by Patt worth living. Franciosi), to our WFMH Public Impact Committee (chaired by The topics in this collection of papers