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 were chosen to reflect Gabriel Ivbijaro), and to our staff members Deborah Maguire and the experience of “living” with the illness but also the basic Elena Berger. I wish to thank Lundbeck for having supported us scientific facts about it. We have to know what we are talking with an unrestricted grant to achieve our public education goal, about and this knowledge should be evidence-based. The and Otsuka for its generous support. I appreciate an unrestricted concept of “recovery” is important but it has variable limitations. grant from F. Hoffmann-La Roche Ltd. which supported the It is not a substitute for treatment but acts in dynamic synergy project. I would also like to thank the contributors to this with it. Schizophrenia is a severe, potentially incapacitating collection of papers, all of them experts in their field, for putting illness that affects a considerable segment of the population. their expertise to the service of this goal. This publication is in About 0.7% to 1.0% of the population globally is affected by line with a WFMH tradition that has existed for many years and this condition, not counting those who belong to a broader we believe has contributed considerably to the advancement of schizophrenic spectrum, and those who are indirectly affected global mental health. by it. It is estimated that at least 26 million people are living with Translations extend the reach of the project. For arranging schizophrenia globally. People with schizophrenia die 15-20 years the translation of the material into Arabic, I wish to thank earlier than the general population (mainly due to co-existing His Excellency Dr. Abdulhameed Al-Habeeb, Director General physical illness and smoking); they are 6-7 times more likely to of Mental Health, Saudi Ministry of Health and Dr. Abdullah be unemployed; they are very often homeless and in contact Al-Khathami; for Chinese, Sania Yau, New Life Psychiatric with the criminal justice system; and 5-10% take their own life. Rehabilitation Association, Hong Kong; for Hindi, Dr. According to the World Health Organization, schizophrenia is M.L.Agrawal and Dr. Aruna Agrawal, Directors of Agrawal Neuro one of the leading causes of disability globally. Psychiatry, India; and for Russian, AstraZeneca Russia. However, the above facts about the severity of schizophrenia Lastly, I wish to thank Hugh Schulze and his communications, should not lead to pessimism. Modern methods of treatment, graphic design and web development company c|change in both biological and psychological, coupled with a change Chicago for their design of this publication and for their design of attitude in society about mental illness, have led to and support of the WFMH website. very impressive changes that have allowed “Living with Schizophrenia” to be a positive and productive experience for many persons. Many more can live in the community with Prof. George N. Christodoulou some symptoms that do not substantially prevent them from President leading a normal everyday life. Self-help groups and advocacy World Federation for Mental Health organizations (like our WFMH) have contributed considerably to these positive developments.

4 It wasn’t that long ago that many people considered schizophrenia a chronic, progressive illness that meant people’s dreams had to permanently be put on hold. Today, schizophrenia is no longer an automatic life sentence. A growing cadre of consumers, researchers and healthcare providers now say recovery is not only possible, it is a natural right of those diagnosed with the illness.

Barrett R. Turning the Corner: Hope is about recovery and resilience. Schizophrenia Digest 2003Spring: 38-39

Dear Friends and Colleagues: We also want to draw attention to the needs of family members and other caregivers. And we want to draw attention to the The World Federation for Mental Health (WFMH) has chosen the possibility of recovery. theme “Living with Schizophrenia” for its 2014 World Mental Health Day campaign in order to highlight changes in current This campaign will discuss how to improve public education, thinking about the illness. WFMH established World Mental raise awareness, reduce stigma and discrimination, and Health Day in 1992; it is the largest program of the Federation promote service and policy advocacy to address the impact of and its aim is to draw attention to important mental health schizophrenia on the global burden of disease. issues. World Mental Health Day is observed in many countries We thank you for your continued efforts to promote mental in all parts of the world on October 10 with local, regional and health awareness in your communities by taking part in the national public awareness events. annual World Mental Health Day campaigns. Your local efforts This year we are taking advantage of these observances to let will be the key to lasting change in the way people with mental people know about important changes in the way mental health health issues are treated, and to improving the opportunities they professionals view the illness. At least 26 million people are living have in life. Thank you for all that you continue to do for global with schizophrenia worldwide according to the World Health mental health! Organization, and many more are indirectly affected by it. The illness affects a person’s well being, shortens life and is among Dr. Patt Franciosi the top causes of disability globally. It is often neglected and misunderstood. It imposes a heavy toll on the individuals who WMHDAY Chair experience it, and their family members and caregivers. And the WFMH Board of Directors high level of stigma associated with schizophrenia is an added burden. While the illness is severe, new approaches are resulting in improved outcomes over time for many who have it. A challenge facing the mental health advocacy community is to create public pressure to change national mental health policies around the world, so that they take into consideration the scientific, clinical and social advances of recent decades. It is our aim to improve public understanding of schizophrenia and draw attention to ways in which better care can be provided.

5 section I Living with SCHIZOPHRENIA

WHAT IS SCHIZOPHRENIA? Some people may experience early References: psychosis or a prodromal stage and Schizophrenia is a serious mental illness 1. Schizophrenia. Geneva (Switzerland): World never develop schizophrenia. Others who Health Organization; www.who.int/mental_ that affects how a person thinks, feels, develop schizophrenia never show signs health/management/schizophrenia/en/ and acts. Many people find it difficult of early psychosis/prodrome and therefore 2. Schizophrenia Society of Canada. Basic Facts to tell the difference between real and have no option for early treatment, while About Schizophrenia: Families Helping Families. imagined experiences, to think logically, Ontario (Canada): Schizophrenia Society of there are people who have symptoms and Canada; 2002. 27p. 4. Schizophrenia Handbook. to express feelings, or to behave obtain early treatment but nevertheless go appropriately. on to develop schizophrenia. Symptoms Schizophrenia often develops in which may then occur are often grouped adolescence or early adulthood and in to three categories: positive, negative affects approximately 26 million people and cognitive. The terms “positive” and worldwide.1 People with schizophrenia “negative” can be confusing. Essentially, experience a range of symptoms that may positive symptoms suggest that something make it difficult for them to judge reality. is present which should not normally be While there is no cure for schizophrenia there. A negative symptom is something at the moment, treatments are available that is not present, but should be. which are effective for most people. Schizophrenia can occur anywhere, and Not everyone who is diagnosed with affect anyone. However, variations exist schizophrenia has the same symptoms.2 in the numbers of people diagnosed in The definition of the disorder is quite different communities, the symptoms that wide, includes many different possible they experience, how they are diagnosed, combinations of symptoms, and can and how different communities view and vary across countries. Schizophrenia will react to someone who has schizophrenia. normally be diagnosed by a psychiatrist, There is also significant inequity in access but there are many symptoms which to treatment for people with schizophrenia occur in schizophrenia that everyone depending on where they live. The World can be aware of. For some people, Health Organization reports that more than schizophrenia begins with an “early 50% of people with schizophrenia cannot psychosis” or “prodromal” stage. Key access adequate treatment, and 90% of features of this stage include: people with untreated schizophrenia live in the developing world. • Sleep disturbance Schizophrenia is a treatable disorder. For • Appetite disturbance the millions of people worldwide living • Marked unusual behaviour with this disorder, there are treatments • Feelings that are blunted (flat) or seem that can help to reduce symptoms and incongruous (inconsistent) to others improve the ability to function at home, at work, and at school. For many people, • Speech that is difficult to follow long-term medication is necessary but • Marked preoccupation with unusual a number of other treatment options/ ideas services may also be helpful including talk therapy, self-help groups, vocational • Ideas of reference – thinking unrelated rehabilitation, community programs and things have a special meaning, ie, peer-support. People with schizophrenia people on TV talking to you should work with their healthcare • Persistent feelings of unreality professionals and families to develop a • Changes in the way things appear, treatment plan that works for them. sound or smell

6 SCHIZOPHRENIA: activity ; postnatal brain injury; early While psychiatry struggles to understand IT’S STILL PRETTY MUCH childhood trauma; or Toxoplasma gondii , the causes of schizophrenia and works for WHAT IT USED TO BE an intracellular, parasitic protozoan. cures, persons with schizophrenia can be contributing individuals in the mainstream A major step forward in the treatment Jeffrey Geller, MD, MPH of society. Even some aspects of stigma of schizophrenia occurred in the mid- against those with schizophrenia are A bold statement: The progress in our 1950s when chlorpromazine became waning. Not long ago, if one encountered understanding of schizophrenia, with one available. There followed a series of other a lone passerby talking out loud and fundamental exception, has advanced medications, all with quite problematic gesticulating enthusiastically, one thought, surprisingly little in the past half century. side effects, many in the category “He’s crazy.” Now, we pay that person no Schizophrenia is a set of symptoms of etrapyramidal side effects, e.g., mind—he’s just another denizen of our psychiatry has labeled as a disorder. haloperidol, thiothixene, perphenazine, community talking on a hands-free cell According to DSM-IV-TR (the Diagnostic trifluroperazine. Thirty-five years after phone. and Statistical Manual of Mental chlorpromazine, a new generation of Disorders, text revised, published by the antipsychotic medications was introduced American Psychiatric Association in 2000), by clozapine, to be followed during Jeffrey Geller, MD, MPH the diagnostic criteria for schizophrenia the 1990s by olanzapine, risperidone, Medical Director, Worcester Recovery Center & Hospital are : Two (or more) of the following, each and quetiapine, with ziprasidone and Professor of Psychiatry, University of present for a significant portion of time aripiprazole coming along in the early Massachusetts Medical School during a 1-month period (1) delusions (2) 2000s. Initially touted as both more hallucinations (3) disorganized speech (4) effective and with fewer problematic side grossly disorganized or catatonic behavior effects based on efficacy studies, when put (5) negative symptoms, i.e., affective to general use neither claim for the atypical flattening, alogia (poverty of speech), or was entirely born out (with clozapine being avolition (lack of motivation). Only one of the sole exception). In the last 10 years or these symptom is required if delusions are so, the third generation of antipsychotics bizarre or hallucinations consist of a voice has become available, e.g., lurasidone, keeping up a running commentary on the paliperidone. Whether these are any more person’s behavior or thoughts, or if there than “me too” drugs remains to be seen. are two or more voices conversing with All these medications treat symptoms; each other. For a significant portion of the none address the cause of schizophrenia or time since the onset of the disturbance, offer a cure. one or more major areas of functioning So, schizophrenia is a group of symptoms such as work, interpersonal relations, or that may be one or many diseases; has self-care are markedly below the level a yet to be determined cause; and has a achieved prior to the onset. There have cornucopia of medications that can treat been continuous signs of the disturbance its symptoms, but at the cost of significant persisting for at least six months. side effects. Not a pretty picture. Thirteen years later, in DSM 5, there While none of this sounds overly hopeful, were no major changes in the diagnostic the fundamental shift in our thinking criteria. In DSM 5 two or more symptoms about schizophrenia concerns its course. are always required and the subtypes Once thought of as dementia praecox of schizophrenia have been deleted. (premature dementia) or labeled the Subtypes had been defined by the “cancer of psychiatry” with a downward predominant symptom at the time of course to, if not oblivion, then to the back evaluation, but these were not helpful wards of a public psychiatric hospital, because patients’ symptoms often change schizophrenia is now thought of as a from one subtype to another over time disorder that an individual can manage, and there are all too often overlapping with a combination of treatments, in features amongst the subtypes. The order to live a life in recovery. According etiology of schizophrenia remains outside to the US Substance Abuse and Mental our reach. While we have moved beyond Health Services Administration (SAMHSA), the “schizophrenogenic mother”, theories recovery is “a process of change through of etiology are about as wide-ranging which individuals improve their health and as one can imagine: prenatal influenza wellness, live a self-directed life, and strive or other prenatal factors; a determined to reach their full potential.” A person enzymatic error, such as one causing with schizophrenia can be a person in episodic or continuous formation of recovery. endogenous 6-hydroxydopamine or a novel mechanism for regulating dopamine

7 THRIVING NOT JUST SURVIVING personal capacity to communicate, or manage their lives and often develop new friendships and ways of coping. Above all, Janet Meagher, AM ability to confidently relate with anyone else. they survive. Surviving People living with a variety of traumas Anyone who can find their way through It won’t surprise you to hear that a connected to the experience of the personal mess and the emotionally particular person who had multiple schizophrenia will find at this stage of charged losses that accompany a life lived mental health crises, innumerable the progress of their disorder that they with schizophrenia, is, in my judgment, a admissions to acute psychiatric hospital have become reluctant experts—experts real hero. The singular effort and courage wards, sometimes lived in ‘halfway whose expertise has had to be developed involved in living and surviving from day house’ group settings, who had times of through their awful task of having to to day is, without exception, a hero’s homelessness, experienced many abusive deal with the grief of multiple losses of journey. This is never fully realized by the attacks as well as physical, sexual and elements that constitute what it is to be clinical or personal helper. My belief is that emotional assaults, who spent the greater human. you need to have an understanding of the part of a decade in a large psychiatric Such losses may include some or all of the effort required for the person to survive institution, was confused, traumatized, from hour to hour, to maintain that last alienated and antisocial. Opportunities for following – losing credibility, rationality, capacity to communicate effectively glimmer of their life force and nurture it recovery and rehabilitation were severely with the secret remnant of potential lying impacted by these experiences. or coherently, loss of reputation, of friends, of family, loss of educational dormant in their heart. At this time and The process of deterioration during that opportunities, of jobs or employability, or in this personal space this is an absolute part of the individual’s life was clearly a your home, your things, your potential, miracle. A flickering of this shows the process of acquiring a range of emotional a family of your own. Loss of physical observant one that there is a spark that traumas and personal damage from fitness, losing your looks, developing poor needs fuel and acknowledgment of what which anyone would be unlikely to health, loss of your future and often your is possible for that person, that hero. emerge unscathed. Looking at this person community connections. “It may be that some root of that sacred as an individual human being, we can tree still lives, nourish it then that it may observe layer upon layer of harm, trauma ‘We found ourselves undergoing that dehumanizing transformation from leaf and bloom and fill with singing and lifelong impacts resulting from the birds.” (Black Elk, Native American Chief) experiences of the processes they were being a person to being an illness: “a drawn into because of developing a schizophrenic”…. Our personhood As the author of this article I have mental health problem. Schizophrenia and sense of self continued to atrophy used my personal experiences and alone was not responsible for the traumas as.… our sense of being a person was understandings of schizophrenia within described or for the person’s subsequent diminished as “the disease” loomed as my own life as my primary reference confusion, alienation and isolation. These an all powerful “It” …. that we were source. I’ve lived with schizophrenia since are the external personal consequences taught we were powerless over…. The my early twenties and have reached that impacted on her because she was self we had been seemed to fade farther the stage where I’m very confidently unlucky enough to develop a severe and farther away, like a dream that managing to live a fulfiling life with my mental illness. It is these elements that belonged to somebody else. The future remaining symptoms integrated into my we can address and eliminate from the seemed bleak and empty and promised life without substantive negative impact. processes of treatment and support nothing but more suffering. And the I have accepted schizophrenia and no to enable future opportunities for the present became an endless succession of longer deal with it as a problem needing person living with schizophrenia to lead a moments marked by the next cigarette to be ‘treated’ or eliminated but as a contributing life. and the next. So much of what we were ‘normal’ aspect of me that merely needs suffering from was overlooked. The to be managed and monitored by me. Yet the schizophrenia was (and potentially context of our lives was largely ignored. This mindset is hard to practice and learn still is), in this person’s experience, layered The professionals who worked with but makes for a great quality of life and on top of this external trauma creating us had studied the science of physical the ability to reach some of my remaining its own additional horrendous and utterly objects, not human science’. Patricia potential. unbearable burdens. These burdens are Deegan, “Recovery and the Conspiracy the ones that totally crush people. The The result is that I’ve become a person of Hope,” TheMHS Conference 1996, who lives a full and rewarding life. I personal experience of schizophrenia Brisbane, Australia. convinces those of us who live with it that am able to contribute at the highest it is unbelievably adept at dehumanizing The person living with schizophrenia is level of government, and at local, state, us, creating vulnerability and expunging an enigma, because their mere survival national and international mental health from us any ability to develop or bestows upon them a hero status. involvements with enthusiasm and nurture hopes or dreams, erasing our Of necessity, they have had to deal with vigor. In this work I particularly lobby trust, eliminating our sense of personal a plethora of loss, of trauma and of for enhanced recognition and respect capacity and our intelligence, leaving us personal and emotional distress yet they for those people across the world who as remnants, a human shell, devoid of keep going, they find ways through their live with mental or emotional distress. the surety of emotion, of a meaningful struggles, and their efforts see them In mental health work, ethical processes

8 ought to demand that there should poking through one little grain of sand We deserve not just to survive, but to be “Nothing about us without us,” at a time’. Patricia Deegan, “Recovery have opportunities to thrive and to live a and if that were so there would be and the Conspiracy of Hope”. TheMHS contributing life. more respectful and humane policies, Conference 1996, Brisbane, Australia. attitudes and services and less damaging If we look at an ongoing journey to Janet Meagher AM misunderstandings. Ultimately there “recover” or deal with the impacts of Consumer Activist would be genuine consumer/user/survivor living with schizophrenia, my journey National Mental Health Commissioner (2012- 2013) Australia participation as well as enhancement requires that…. of and recognition of people’s human [email protected] rights in all treatment, psychosocial and • I understand controlling my symptoms professional development settings. is possible; I embrace them but sideline them and learn ways of dealing with With the right encouragement and them, so that they no longer dominate building on an individual’s capacity, good my life. things begin to happen. • I dare to hope for a fulfilling life. Frequently people living with schizophrenia, with the right • I am able to take risks and learn from opportunities, will be able to do more my actions. than merely survive—they will thrive. • I can develop effective strategies to overcome my symptoms and Thriving disorganized tendencies. For the person living with schizophrenia who wants to move beyond surviving • I can love and be loved by others to thriving we will need to ascertain regardless of my diagnosis or social what would help or hinder that shortcomings. person embarking on that journey. If • I ought to participate because I have schizophrenia is my life companion I ideas and can offer inputs that are of need to find ways forward so that its value. Others should encourage this impacts on my life are lessened, so that to develop confidence and bolster self this ‘burden’ can be dealt with, managed esteem. and minimized in order for me to deal • I experience a usual range of stress, with and overcome the impacts of the and need to plan for ways to overcome external traumas and consequences. The difficulties and document my progress way forward is to develop a hope-filled with challenges. mindset. • I can live independently and manage Today’s understanding of moving forward my life needs—with support from time with hopes and dreams is called a journey to time if necessary. of recovery. • I am employable and able to aim at ‘Recovery does not refer to an end earning and supporting myself. product or result. It does not mean that one is “cured” nor does it mean that • I am able to overcome the traumas and one is simply stabilized or maintained in damage to my life and contribute to the community. Recovery often involves my community. a transformation of the self wherein • I can hope and dream for the same one both accepts one’s limitation and ideals and opportunities, as others are discovers a new world of possibility. This free to do. is the paradox of recovery, i.e., that in accepting what we cannot do or be, Attitudes of the support people are we begin to discover who we can be pivotal to the success of this process. The and what we can do. Thus, recovery is a offering of appropriate and empowering process. It is a way of life. supports is the only things which will enable a person to begin to thrive. It will It is an attitude and a way of approaching be a slow but effective awakening with the day’s challenges. It is not a perfectly consistent support. I was drawn through linear process…. recovery has its seasons, such a process and my fellow peers living its time of downward growth into the with schizophrenia also deserve the darkness to secure new roots and then same opportunities to live a fulfilling and the times of breaking out into the rewarding life. sunlight. But most of all recovery is a slow, deliberate process that occurs by

9 LIVING WITH SCHIZOPHRENIA of schizophrenia, but that is only half Bill MacPhee the battle. Once we get stable we need to work on psychosocial issues such as I have been living with schizophrenia our social skills and building our support since 1987, from the age of 24. I was system. We need to come out of our hospitalized six different times, lived isolation and make a life for ourselves, in three group homes, and had a which I will admit is easier said than done, suicide attempt. I suffered with positive but it is crucial. This may sound blunt but symptoms such as paranoia, delusions, many people need a life. Remember the thinking that I could read other people’s saying “Get a life”? Well that is exactly minds, voices and hallucinations. I have what we need to strive for; we need to dealt with negative or deficit symptoms get a life. In other words, what happens is such as lack of motivation and energy, that we get stuck. In my case I was on the lack of joy and blunted effect on couch for five years thinking of ways to my emotions, as well as depression. kill myself and having no life at all. I was Schizophrenia was the hardest challenge stuck. But I did know what scared me. to deal with in my whole life. It was that five years turning into seven There is life after mental illness. and ten years. I use to say if things don’t change they will stay the same, if things Today I consider myself as a recovery don’t change they will stay the same. I expert and my definition of recovery hated my same. I knew I needed to create is when you would not want to be a spark. I needed a life. anyone other than who you are today. This definition is meant for all of us, At this time I was dealing with self-esteem not just people with mental illness or issues and I remembered what a grade 7 schizophrenia. Today I am married, have school teacher said to me. She said “Bill, three children and run a small publishing if you do not learn to write properly you company (www.magpiemags.com). I will never amount to anything in life.” am active in my community and speak My penmanship was like chicken scratch. throughout North America. Was it easy? Remembering that, I said to myself ‘I am No. It takes living one day at a time, and going to prove to someone that I can always moving toward a better quality of do something.’ So I took the initiative life. to contact the literacy foundation in my hometown and told them that I could I have talked to hundreds of people read and write but my penmanship was dealing with mental illness and what is very poor and I wanted a tutor. This most important in order for people to was my turning point. My tutor got me recover is opportunity. People need to socializing and making friends and helped find and identify opportunities that exist me by asking if I would help out in the to find a start and move in the right scouting movement. From that point on I direction for a better quality of life. One met friends and started to get active and thing that is important for individuals, invest myself in the community, which family members and people who may be again was my turning point. caregivers is that you cannot make the initial decision for someone else. A person There is life after mental illness. For the needs to want a better quality of life, last 20 years I have been publishing but remember that you have to separate SZ Magazine and just published my someone’s lack of ambition from a lack of autobiography and memoir called “To Cry self-esteem. Everyone who has a mental a Dry Tear: Bill MacPhee’s journey of hope illness, at one time or another, deals with and recovery with schizophrenia”. a lack of self-esteem. We are very fragile people, but we must not beat ourselves Bill MacPhee up as we start to recover our self-esteem, CEO/Founder, Magpie Media Inc. and our confidence will come back. [email protected] www.mentalwellnesstoday.com My medication works for me. It was a trial and error process but with my medication I have no positive symptoms

10 LIVING WITH SCHIZOPHRENIA: people. They have helped me and have A PERSONAL STORY given me the ability to help others. Dr. David Crepaz-Keay Jobs Living with schizophrenia, My work has always been important the first 35 years…. to me, both before my time working in mental health and since. I have not I’ve been living with my diagnosis of always been able to work, and my best schizophrenia for over 35 years now. I employers have been very supportive got it when I was a teenager. It wasn’t when I have been at my most unwell. my first diagnosis but it was the one that Although work can sometimes be stuck. When I first got it, I thought my stressful, I have always found being out life was over. I was studying for exams of work much worse. My work has given and I wanted to be an economist. I didn’t my life meaning and purpose, a chance to think anyone would want a schizophrenic contribute. economist. My work in mental health has enabled me Expectations to take my experience of mental ill-health I wasn’t alone in thinking that. One of and use it to help others. I have had the the things that struck me most was the opportunity to meet many people who low expectations that followed. This was have been directly affected by mental particularly apparent amongst medical ill-health and still achieved great things. staff, all they saw was a label—the Together we have become part of an person I used to be, or might become, international community and are stronger vanished. If enough people, particularly for it. professionals, treat you like a lost cause, then sooner or later you end up believing Future it. I was fortunate that people who really When I first got my diagnosis, I thought understood my experience still expected my life was over. Now, 35 years later, I just me to achieve things. One in particular think it’s part of who I am. The people persuaded me to get actively involved in a I care about, the people who matter, local support organisation, expecting me don’t see a diagnosis, they see a person. to get on and do things for myself and It’s been an interesting 35 years and I’m others rather than becoming a passive looking forward to many more. patient. Dr David Crepaz-Keay Friends and relationships Head of Empowerment and Social Inclusion Fortunately I had friends who believed Mental Health Foundation, UK in the old me. I also developed new friendships with people, many of whom had shared my experiences of psychiatric care. Spending time with people who shared my experience, but had survived and thrived in spite of it, was an inspiration and many of these people remain good friends to this day. Not all my friends were able to cope with me and sometimes I felt very lonely and isolated, but there were times when it was only my friends that kept me going. Treatments and services Attitudes towards treatments were often unhelpful. It should be simple, the treatments either help or they don’t. If they do, that’s good. People should have access to the best available; if they don’t, it’s no one’s fault and treatments that don’t work shouldn’t be forced on people. Self-help, self-management and peer support are starting to help a lot of

11 section II HEALTH PROMOTION & Prevention IN SCHIZOPHRENIA

HEALTH PROMOTION IN health promotion is also necessary in focusing on their health rather than their SCHIZOPHRENIA addition to prevention. In fact it becomes illness. By doing so, they enhance their even clearer how necessary it is if we just ability to achieve psychological well-being Dr Nikos Christodoulou, 9 Prof Dinesh Bhugra listen to what people who suffer from and also cope with adversity . schizophrenia actually want: They do want While this approach can yield great to get on with their lives which means rewards for people with schizophrenia, Introduction having jobs, friends, housing and money managing to adhere to it is easier said The World Health Organisation defines even if they continue to have symptoms. than done. The difficulty lies in that health as “a state of complete physical, The challenge for psychiatrists is to one needs to keep their illness at bay mental, and social well-being and combine treatment as well as prevention while focusing on the positive aspects not merely an absence of disease or but equally important to advocate for our of their life. Keeping the illness at bay is infirmity”1 . This definition captures two patients and help promote mental health. complicated by the fact that schizophrenia crucial points: Listening is only one part of is one of the few illnesses that affect the Firstly it emphasises that mental health is communication between the clinicians person’s ability to recognise that they, in an inseparable part of a person’s holistic and their patients; the other is delivering a fact, have an illness. Lacking that insight well-being, together with physical and clear message which is easily understood: makes people believe that they don’t social health. This latter point of the We aim to do just that in this piece. need therapy, be that with medications indivisibility of body and mind is ancient; This is hopefully a clear and informative or any other kind, and slowly but surely “mens sana in corpore sano” (healthy introduction to health promotion in the illness returns with a vengeance. This mind in a healthy body)2 and also “τίς schizophrenia. It is written for a wide tension can create major problems with εὐδαίμων, ὁ τὸ μὲν σῶμα ὑγιής, τὴν audience, including those who suffer from carers as well as health care professionals. δὲ ψυχὴν εὔπορος, τὴν δὲ φύσιν the illness, their carers and families, and That is why it is very important for people εὐπαίδευτος” (Who is happy? He who healthcare professionals alike. with schizophrenia to remember that, in has a healthy body, a resourceful soul and addition to their own individual strengths Illness Prevention and Health a docile nature”)3. In addition to notable and virtues, they also have an illness that Promotion in Schizophrenia elaborations in the literature4,5, recent needs to be tamed in the same way as years have seen the elevation of this Schizophrenia is one of those life- other chronic conditions are managed. philosophical stance into a campaign, for changing illnesses, but it does not have to be life-defining. Just like people with Focusing both on prevention and instance the “No health without mental promotion can serve to help in multiple health” campaign, endorsed by the World diabetes, hypertension, rheumatoid arthritis or heart disease, people with ways: Improving one’s health can lead to Psychiatric Association, the Royal College preventing mental illness and vice versa. of Psychiatrists and the Department schizophrenia frequently have to keep As shown in the case of depression10, of Health for England, among others. their illness at bay with medications, life- people with low positive health can be Promoting mental and physical health style changes or psychological therapies vulnerable to illness, and conversely, by together is the right thing to do, especially or a combination of those. But beyond increasing positive mental health one in schizophrenia, especially if one takes illness, and certainly more importantly, may also manage to prevent illness11. into account the physical co-morbidity people with schizophrenia have a life to Using prevention and promotion makes associated with it. However, in the past live and enjoy. It may be with small steps logical sense; on the one hand prevention it has been noted that mental illness initially, but focusing on the positive is better than cure, and on the other prevention and mental health promotion aspects of one’s life builds on strengths hand improving one’s life is an end have received less attention than the and leads to an upward spiral of positivity. in itself. Furthermore, mental illness physical health needs of people with By focusing on this - the positive and prevention and mental health promotion mental illness6. healthy aspects of their life – people who suffer from schizophrenia begin to gain are supported by mounting evidence on Secondly, the WHO definition asserts that confidence and self-esteem and become their effectiveness and cost-effectiveness, illness prevention is necessary, but not more independent and empowered which is reflected in the fact that they 7 enough to achieve health . This concern in their life. Eventually, they can start have been endorsed by major bodies such 12 is underpinned by the fact that psychiatry defining their life and themselves as as the European Parliament and the 13 has focused on illness rather than well- persons rather than patients and start World Health Organisation . being and good functioning8; indeed, 12 Health Promotion May Be the almost by definition it is very difficult Health promotion in schizophrenia is Most Important Intervention in to “catch” it early. Regardless of that, important not only for the individual, Schizophrenia preventing relapses and consequences but also for society as a whole. There is Some people with schizophrenia of the illness (secondary and tertiary good evidence suggesting that illness experience a gradual decline in their prevention) can be useful, as preventing prevention and health promotion ability to function at a high level. This relapses also prevents further functional measures in schizophrenia may be both is due to a number of factors some of deterioration, and consequently improves clinically effective and cost-effective19. which are intrinsic to schizophrenia, quality of life. Although the usefulness of Although financial considerations should including, for example disorganisation prevention may be rather limited for those not come into play at the clinical setting, and depression, but others are to do who have already had functional decline, one cannot escape the realisation that with stigma and social exclusion. For health promotion can still play a key role. cost-effectiveness coupled with re- those who experience it, this functional In order to improve quality of life for investment can improve mental healthcare decline can be very frustrating, especially patients, a different approach is needed, for all. as it is often persistent. Treating and that would be to reinforce those schizophrenia appropriately means factors in a person’s life that would Conclusion that some of the symptoms may go empower them to build on their own away, but even that does not guarantee strengths and improve their quality of life, In conclusion, health promotion may be that the person’s life experience will regardless of the state or stage of their considered to be the most important improve. A characteristic example of this illness. Health promotion can be applied intervention in schizophrenia as it can is depression in schizophrenia: There is way before the illness manifests itself benefit everyone20, regardless of the state some older evidence suggesting that and will contribute towards primary and or stage of their illness, can be applied depression can be a good prognostic secondary prevention as a bonus effect. to the wider population, can offer an factor for schizophrenia. Indeed, this is An excellent example is Early Intervention improvement in quality of life as opposed often seen in clinical practice, where an in psychosis, a practice that has great to the mere absence of illness, and can affective component may predict better potential not only for preventing the be cost-effective and therefore indirectly response to medications. However, more onset of frank illness for young people beneficial for the health of many more recent evidence suggests that, while the with prodromal symptoms, but also for people. Given the evidence, mental health presence of depression may be good longitudinally influencing their health professionals need to embrace mental for the prognosis of the illness, it is not and quality of life17. Even for those who health promotion. However it appears good for the person, as it is associated will not go on to develop schizophrenia, that often this is not the case21. More 14 15 with poorer recovery , more relapses population-targeted mental health effort is therefore required, particularly 16 and generally a drop in quality of life . promotion can lead to an improvement in order to communicate this message to In other words, treating schizophrenia in in well-being and quality of life. Being mental health professionals, but also to these cases may be relatively easier but aware of the stressors which can cause patients and their carers and families. To regardless of whether the treatment is any number of psychiatric illnesses and this end, the role of the World Federation successful or not, the person still suffers relapses can help a person. Focusing of Mental Health is very important and its with a lower quality of life. on promoting health in addition to Mental Health Day is a pivotal event. Therefore, as demonstrated in the case preventing/treating the illness allows us to of depression in schizophrenia, treating achieve an improvement in quality of life the illness is not enough to achieve true irrespective of the illness. References quality of life. Preventing the illness A very important conceptual point that 1. WHO. The World Health Organization Quality from occurring in the first place (primary of Life assessment (WHOQOL): position Paper. Soc emerges from this approach is that Sci Med. 1995;41:1403–1409. prevention) would be a very attractive focusing on the promotion of mental 2. Juvenal. In:Saturae, Liber IV, Satura X, 356. option, as symptoms and functional health allows us to consider the person 3. Thales. In:Diogenes Laërtius, (R. D. Hicks, ed.), decline would not have developed yet – not the illness – as the central and Lives of Eminent Philosophers I:37. in these early stages. However, as a most important entity. Indeed, person- 4. Kalra, G., Natarajan, P., Bhugra, D. Migration practical matter, in most cases prevention centred medicine itself has developed and physical illnesses (2011) Migration and mental in schizophrenia is tackled at a secondary into an important champion of mental health, pp. 299-312. or tertiary level, i.e. once the disorder has 5. Christodoulou GN, Kontaxakis VP (eds, 1994). illness prevention and mental health Topics in Preventive Psychiatry. Basel, Karger. already taken hold or has already caused promotion18. Focusing on the person 6. Herrman H. The need for mental health symptoms and/or functional decline. rather than the illness and applying promotion. Aust N Z J Psychiatry. 2001;35:709– In fact, one of the main difficulties in mental health promotion equally to both 715. recognising schizophrenia at primary the healthy and the ill, helps to push back 7. WHO. Mental Health Action Plan for Europe: preventive level is that it is exactly those against the stigma associated with mental Facing the Challenges, Building Solutions. Helsinki, Finland: World Health Organization; symptoms that reveal it, and therefore illness and psychiatry. 2005.

13 8. Ryff CD, Singer B. Psychological well-being: meaning, measurement, and implications for psychotherapy research. Psychother Psychosom. 1996;65:14–23. 9. Kalra G, Christodoulou G, Jenkins R, Tsipas V, Christodoulou N, Lecic-Tosevski D, et al. Mental health promotion: Guidance and strategies. Eur Psychiatry. 2012;27:81–86. 10. Wood AM, Joseph S. The absence of positive psychological (eudemonic) well-being as a risk factor for depression: a ten year cohort study. J Affect Disord. 2010;122:213–217. 11. Burton NW, Pakenham KI, Brown WJ. Feasibility and effectiveness of psychosocial resilience training: a pilot study of the READY program. Psychol Health Med. 2010;15:266–277. 12. European Parliament Resolution of 19 February 2009 on Mental Health. P6 TA[2009]0063. Available at http://www.europarl. europa.eu 13. World Health Organization: Summary report: Prevention of mental disorders - effective interventions and policy options. Geneva: World Health Organization 2004. 14. Resnick SG, Rosenheck RA, Lehman AF. An exploratory analysis of correlates of recovery. Psychiatr Serv. 2004;55(5):540–547. 15. Tollefson GD, Andersen SW, Tran PV. The course of depressive symptoms in predicting relapse in schizophrenia: a double-blind, randomized comparison of olanzapine and risperidone. Biol Psychiatry. 1999;46(3):365–373. 16. Reine G, Lancon C, Di Tucci S, Sapin C, Auquier P. Depression and subjective quality of life in chronic phase schizophrenic patients. Acta Psychiatr Scand. 2003;108(4):297–303. 17. Christodoulou GN, Christodoulou NG. “Early Intervention in Psychiatry”. Launching editorial in: Early Intervention in Psychiatry 2007;1:5-6. 18. Christodoulou NG, and Ramalho R (2012). The paradigm shift from a disease-centred to a person-centred preventive medicine. Contribution in: Manifeste pour une Médecine de la Personne [French]. France 2012:47-55. 19. Christodoulou NG, Christodoulou GN. Financial crises: impact on mental health and suggested responses. Psychother Psychosom. 2013;82(5):279-84. 20. Min JA, Lee CU, Lee C. Mental Health Promotion and Illness Prevention: A Challenge for Psychiatrists. Psychiatry Investig. 2013 Dec;10(4):307-316. 21. Monshat K, Herrman H. What does ‘mental health promotion’ mean to psychiatry trainees? Australas Psychiatry. 2010;18:589.

Dr Nikos Christodoulou Assistant Professor in Psychiatry University of Nottingham Medical School United Kingdom [email protected]

Prof Dinesh Bhugra Professor of Mental Health and Cultural Diversity Health Service and Population Research Department Institute of Psychiatry, King’s College London United Kingdom [email protected]

14 SCHIZOPHRENIA & SOCIAL mental health services over the previous Social inclusion is a meaningless INCLUSION 12 months. In fact you are 14 times more term unless we break it down into likely to be the victim of violence than the its component parts. It is not just John Bowis perpetrator. communication and outreach services, Just imagine you have been to your GP Looked at another way, 99.97 per cent of although it may involve both. It is listening (primary care doctor in the UK – General people suffering from schizophrenia will and respecting and assuming a can-do Practitioner) and he has made a diagnosis not be convicted of serious violence in a ability on the part of the individual – or a and you go round to the pub or back to given year. could-do one, if obstacles were removed work and say to your friends or colleagues and encouragement given. ‘Do you know what – I’ve just been told I And yet, while an NHS (UK National It is opening doors to advice and have got schizophrenia’. Health Service) survey on attitudes to mental illness in 2011 showed that 77 advocacy; it is making possible Do they rally round, put an arm round you, per cent of people agreed that “mental opportunities to work or to volunteer, buy you a drink, tell you their granny had it, illness is an illness like any other”, only 25 to take as much responsibility as feels reassure you that there are good treatments per cent agreed with the statement that comfortable for now; it means educating for it nowadays and tell you to keep in “most women who were once patients media, communities, employers, trade touch and let them know how you get on? in a mental hospital can be trusted as unions, police, health professionals and Or do they go silent, avert their gaze, babysitters”. managers and policymakers to revise remember they have a meeting to get to, old assumptions and old prejudices; it The second assumption is that you cannot slink away to phone home and tell their means ensuring the law, regulations be treated or cured and so you should spouse not to let the children go to your and procedures are reviewed and made not be out of a hospital. The reality is that home anymore? relevant; it means treating co- and multi- some 25% of people with schizophrenia morbidities; it means having a benefits Or do you not go to the pub or back to do recover fully, a further 25-35% system and housing provision that help work or anywhere you might meet your improve considerably and live relatively recovery and stability and it means caring former friends and colleagues, because independent lives, some 20% improve but for the carers and assessing their needs. you’re scared – scared about your need extensive support and between 10 condition and scared about their reaction? and 15% remain unimproved in hospital. It means all of us posing the question to ourselves: ‘If it is me or my child or my Schizophrenia is a no-go word; it is a A further 10-15% will die prematurely, mostly by suicide. spouse or partner, what would I fear, word that spells stigma – stigma from the what would I hope for and how could I be rest of the world and stigma from inside I have met many people who live with the helped to cope?’ you. No wonder campaigns are running condition. Some have been in hospital, to change the terminology – although some have been living independently in John Bowis I’m not sure the proposal of ‘Psychosis the community, some with their families, WFMH Advisor Susceptibility Syndrome’ is quite the de- some have served with me on NGO Former UK Member of Parliament and Health stigmatising alternative we seek. boards and some are holding down Minister Member of the European Parliament and Whatever we call it, we need to de- responsible and demanding jobs. Some Spokesman on Environment, Health & Food Safety demonize it, if we are to succeed in have few symptoms and some have Honorary Fellow of the Royal College of bringing social inclusion to those who live overpowering ones. They range across Psychiatrists with it. the list of positive symptoms, such as hallucinations and delusions, to negative The first assumption is that you are ones, such as withdrawal and lack of dangerous. The media choose to portray motivation, to cognitive deficit, such as your condition as violent and a risk to loss of attention span and these are well people in the street. The reality is that described in the Backgrounder sheet you few have violent episodes and most of will have seen. those are cases of self-harm. In the UK we have some 250,000 diagnosed cases. Of The film ‘A Beautiful Mind’ gave a vivid the 5,189 homicides in Britain over nine experience of living with voices, of years between 1997 and 2005, only some withdrawal, of family confusion and of 510, or 10 per cent, were committed by ultimate hope, which certainly reflected people who had been in contact with the the lives and emotions I have met. The key message from my experience and from that film is that this is a condition which can be managed and self-managed with supportive treatment, social care and with doors opening to social inclusion and not slamming shut through the ignorance of pre-judging and stigma.

15 THE ROLE OF GOVERNMENT be effectively cared for without fully select the goals and lifestyle practices that AND CIVIL SOCIETY IN engaging them in their own health. they value and should be cared for by PERSON-CENTERED CARE FOR Consequently, we believe that bold new services responding to their needs, goals, approaches to health promotion and and values. Chronic diseases, the services SCHIZOPHRENIA illness intervention need to be developed that seek to tackle them, and their wider Juan Mezzich, MD, PhD and integrated in our health systems. economic impact ultimately involve WFMH Vice-President for Governmental Affairs Furthermore, the patient needs to persons, each with a unique life story, Person-centered care offers a promising remain at the heart of these approaches. and a unique outlook on life. This shapes approach to care for people experiencing Effective public health, clinical, medicinal their lifestyle colored by their experiences schizophrenia and other chronic and technological procedures must be and environments, including the course conditions, as it places the person in developed and implemented having the of their diseases and associated risk and context at the center of health care whole person at the core within a broad protective factors. rather than considering such persons as biological, psychological and socio-cultural Effective prevention and treatment of just carriers of illness. Person-centered framework. diseases should monitor and promote care, by emphasizing a holistic health Around a third of the world’s population well-being, and should not be reduced to framework and a recovery-oriented currently suffers from at least one chronic symptomatic treatment and prevention approach, is not only more likely to be disease. More than 60% of deaths of diseases and their risk factors, as effective on a sustained basis but also may in 2008 resulted from cardiovascular, recognized by WHO’s definition of help de-stigmatize the persons affected cancer, diabetes and respiratory illnesses. health. Attention to health promotion and those who care for them. Heath care A quarter of these deaths occurred is also important to motivate adherence under this perspective is the responsibility in people under the age of 60. Other to treatment. People are more easily of all involved, i.e., patients, families, chronic diseases such as mental and convinced to maintain actively their well health professionals, non-governmental musculoskeletal conditions have being than to restrain from unhealthy organizations (such as the World disproportionally high disease burden. practices leading to disease onset and Federation for Mental Health) as well as Death and disability have a devastating chronicity. governmental and inter-governmental effect on individuals, their families, and organizations. Such a framework of health promotion the societies they live in, with wide and illness intervention should take full Relevant to this approach is the 2012 economic consequences. account of the patient’s life goals, values, Geneva Declaration on Person-centered Four essential components of an stories and aspirations. The application Care for Chronic Diseases which emerged effective approach to chronic and non- of the person-centered approach should from the 5th Geneva Conference on communicable diseases are: always be empathetic, respectful and Person-centered Medicine (in which the empowering to enhance the person’s WFMH along with the World Health 1.Monitoring both risk and protective functioning, resilience, and well being Organization, the International Alliance of factors (intrinsic and extrinsic; biological, through joint understanding and joint Patients’ Organizations and a large group psychological, and social) decision making for clinical care and of global health institutions participate). 2.Monitoring well-being, including health-promotion. It was released by the International outcomes for positive health (vitality and College of Person Centered Medicine and resilience despite exposure and adversity) Thus, the 5th Geneva Conference on published in the International Journal of and illness (morbidity and disease-specific Person-Centered Medicine issues the Person Centered Medicine (Vol 2, pages mortality) following recommendations: 153-154, 2012). It is presented below • Governments should adopt a with permission. 3.Individual and population-level responses to engagement in health comprehensive person- and people- “The 21st century is emerging as the promotion (utilization of resources centred approach to integration century of person-centered care, and for health promotion, adherence to of health promotion and illness this perspective is especially compelling prevention programs, level of knowledge intervention to prevent and control concerning chronic diseases. As the of effective health promotion and chronic diseases. To achieve this, World Health Organization and the maintenance practices, as well as governments should invest in their United Nations have recently documented obstacles and resources needed for their health systems recognizing that and proposed, every government and actual application in life) investment in people’s health is component of society needs to act now investment in social welfare, economic to combat the growing epidemic of 4.Health system responses to illness prosperity and security. chronic and non-communicable diseases (policies and plans, infrastructure, human resources and access to essential • The health sector has a responsibility that threaten the lives and quality of to champion this, and to ensure that living for so many people around the healthcare including medicines and other therapies) health systems are able to engage and world. What we must emphasize now is respond to the growing burden of that a person-centered approach to the It should never be forgotten that people chronic diseases. Health services must promotion and care of health is crucial have risk and protective factors; that also be engaged to prevent, diagnose, to counteract this massive epidemic. people experience vitality and resilience, and treat these diseases through People with chronic diseases cannot morbidities and disabilities; that people the integration of primary care,

16 multidisciplinary specialist services, and public health. • Person- and people-centred care should be supported by a close collaboration between clinical care and public health. Each person with a chronic disease should be fully engaged in partnership to achieve joint understanding and joint decision making to prevent and treat such diseases. • Health professional organizations must work with their members to advance person-centered health promotion and care. It should also ensure the integration of health and social services. • Person-centered public education, professional training and health research are crucial to support effectively clinical care and public health actions for chronic diseases. • Last but not least, civil society in general must be engaged in efforts to tackle chronic diseases, as the effectiveness of these efforts will largely rest on the commitment of every person and component of society involved”.

Juan E. Mezzich, MD, PhD Professor of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, USA [email protected]

17 section III INTERVENTIONS

EARLY INTERVENTION IN early intervention in psychosis showed aimed at relieving their symptoms and SCHIZOPHRENIA that early and appropriate treatment led distress, pre-empting the development to better outcomes for young people of ongoing disability, and preventing Prof Patrick McGorry, MD, PhD over the medium to longer term. This the onset of more serious illness. These The last few decades have seen a work led to the discovery that the treatments are tailored to the stage of paradigm shift in the way we think about duration of untreated illness is the the young person’s illness, and at this serious mental illness, and particularly most important factor associated with very early stage are most likely to include schizophrenia. Until quite recently, long-term outcome that can actually counselling, education and supportive schizophrenia was considered as an illness be modified by treatment: put simply, monitoring. If symptoms persist or with an almost inevitably poor prognosis, early and appropriate treatment allows worsen, cognitive behavioural therapy with little hope of doing more than young people to make a more complete may be offered, and antidepressant or managing the symptoms with medication. recovery, with less ongoing disability. For anti-anxiety medications trialled. Low- However, research over the last two the first time, clinicians and researchers dose antipsychotic medication has also decades has shown that this bleak were able to show that schizophrenia been tested in this patient group, but outlook is by no means justified, and was not a hopeless illness: it need not be is not recommended as a first line of that early and appropriate intervention associated with an inevitable decline and treatment due to the greater risk of side- can change the course of illnesses like ongoing disability. effects. Early intervention is particularly schizophrenia. This work led to a flurry of interest important for these vulnerable young One of the main reasons why world-wide, and the ‘early intervention’ people, because although many of them schizophrenia has been considered as movement was born. Early intervention will not go on to develop schizophrenia, such a devastating illness is the fact that for the serious mental illnesses, like their mood and anxiety symptoms it usually first appears during the late schizophrenia, aims to prevent the onset have the potential to evolve into more teens or early twenties, at a time of life illness, and failing that, to minimise the established illness if they are not treated when the young person is finishing their symptoms and distress associated with effectively right from the start. education or entering the workforce, the illness, and to maximise the chances For those young people who do have establishing their social network, of the best possible recovery without a first episode of psychosis, early exploring romantic relationships, and ongoing disability. Practically speaking, intervention means recognising the beginning to assume their independence preventing the onset of a serious mental illness quickly, and beginning appropriate as a young adult. Any serious illness illness means firstly determining who treatment as early as possible. Initial can severely disrupt this normal is at risk of developing the illness, and treatment involves low-dose antipsychotic developmental trajectory, and it is this then how to intervene to prevent the medication to manage symptoms and disruption to a young person’s normal illness. As yet, we are not able to do this distress. However, recovery involves more development, rather than the symptoms for schizophrenia, because we do not than just eliminating symptoms; for a of the illness alone, that impacts the understand the biology of the illness well young person with a serious mental young person so severely. Studies have enough at present. Much more research illness, it also means maintaining or shown that schizophrenia rarely appears is needed to enable clinicians to develop regaining their normal developmental suddenly, and usually has its onset after diagnostic tests that are accurate and pathway—getting back to work or school, a long period of increasingly severe specific enough. However, the research enjoying their social life again, and living symptoms and disability. Indeed, much of effort to date has allowed clinicians to a full and meaningful life while moving the disability associated with the psychotic identify criteria that indicate that a young on into independent adulthood. Hence, illnesses such as schizophrenia develops in person is at greater risk of developing early intervention for these young people the few years before the first episode of a serious mental illness. These include also means surrounding them and their illness. being aged between 14 to 29 years, families with a comprehensive, integrated Although the idea that it might be because this is when most serious mental continuing care system for the first 2–5 possible to modify the course of illnesses first appear; and seeking help for critical years after the onset of illness, schizophrenia by treating people early, distressing symptoms such as depression, when the risk of accumulating ongoing before the disability associated with the anxiety and low-level psychotic symptoms. disability is highest. onset of their illness became entrenched, Recognising that this group of young Integrated care involves a small continuing was proposed at the beginning of the people is at ultra-high risk of developing case management team providing last century, research into the early stages a serious mental illness has allowed medication and psychological treatments of the illness did not begin seriously clinicians and researchers to develop a to help the young person manage their until the 1990s, when the first studies of number of treatment approaches that are symptoms and illness, complemented

18 by a suite of interventions with a strong national enhanced primary care youth Approaches like these have already shifted focus on promoting social, educational mental health system now operating in our thinking in mental health care, from and vocational recovery, preferably 70 sites across the nation, with a further what has traditionally been a palliative within a specialist early psychosis service. 30 centres to be set up by 2016. Nine of approach, to a pre-emptive approach that These services offer a developmentally these centres are to offer specialised early offers the potential for better outcomes appropriate, youth-friendly, and inclusive psychosis care, modelled on our Early for young people, their families, and our environment where young people can Psychosis Prevention and Intervention society as a whole. be supported in their recovery by a Centre (EPPIC), in Melbourne. Professor Patrick McGorry, AO, MD, PhD, FRCP, multidisciplinary team with specialist Young people from many Australian medical, psychosocial, vocational and FRANZCP communities are gaining free access to Executive Director, OYH Research Centre educational expertise and a particular early intervention and evidence-informed, Professor, Centre for Youth Mental Health, The interest in youth mental health. stigma-free care for mental health issues, University of Melbourne These treatment approaches have been and they and their families are voting Australia [email protected] shown to be very effective for young with their feet, with the demand for people in the early stages of illness, and these services growing steadily. Although are highly valued by both young people it is still too early to assess the long-term and their families. They are also cost- outcomes from these service reforms, effective, and our growing recognition early indications are very positive. These of the importance of young people’s approaches, which offer holistic care from mental health issues, together with the outset, contrast with the currently popular demand for mental health accepted status quo, which all too often services that recognise young people’s and for various reasons, involves outright unique mental health care needs, have neglect. Many researchers and clinicians led to service reforms and new service working in this field feel in common development in countries like Australia, with the general public that they have Ireland, England, Denmark, Canada, watched long enough, and that young and most recently the United States. For people and their families deserve active example, in 2006 the Australian Federal engagement and evidence-informed Government established headspace, a care that is proportionate to their needs.

19 PSYCHOLOGICAL is chosen by the person, and often is to allows the mental health worker to address INTERVENTIONS IN reduce the distress associated with psychotic relational stress that may exacerbate SCHIZOPHRENIA symptoms, such as voices and worrying problems, support families in their care of beliefs (paranoid ideas and delusions), and mentally ill person, and access a family’s skills Philippa A. Garety PhD, to work together to get back on the road to and resources to help the patient in need. Todd M. Edwards, PhD 4 recovery . The sessions may involve talking Family psychoeducation (FPE), also called about how problems started, discussing Family Intervention in some countries2, has Key Messages: what has happened to the person and how been shown to be effective in the treatment they have interpreted it, understanding of schizophrenia and is now deemed an • Psychological treatments are important the unusual experiences they have, and evidence-based practice for reducing relapse in helping people with a diagnosis of exploring new ways of thinking and acting and hospitalisations7. FPE is a collection of schizophrenia and their families. when problems occur. For some people, it programs aimed at providing information • Cognitive behavioral therapy for psychosis may help to keep a diary of these thoughts, about the illness, medication management, is effective and based on the assumption identify particular patterns in problems, and treatment planning to family members that the person’s own experiences should find out more about their beliefs, and how as they cope with their family member’s be taken seriously and that they can be they might be affecting them, and test symptoms and the effects of illness on the helped to take greater control of their out if trying to do something new makes family8. These programs assume that 1) thinking and behaviour. them better or worse. The therapy is based the actions of family members impact the on the assumption that the person’s own person coping with illness and his treatment • Families are often on the front lines of experiences should be taken seriously and care for persons with schizophrenia. and 2) family members need information that they can be helped to take control of and support in caring for a family member • Family psychoeducation (or Family their thinking and behavior. with severe mental illness. FPE is increasingly Intervention) is effective in the treatment The research has also found that arts offered in a group format, where families of schizophrenia. Some people therapies, which do not involve so much join together to decrease social isolation particularly value group formats that talking but make structured use of music, and stigmatization and reap the benefits of aim to decrease social isolation and drama or art as therapy, can be helpful, mutual support7. stigmatization. particularly when people have symptoms Below are examples of Psychological treatments are important such as withdrawing from family and friends interventions in FPE9: in helping people with a diagnosis of and losing interest in things that were once schizophrenia and their families. Coping enjoyable2. These therapies should usually • Assess the family’s strengths and with troublesome beliefs and upsetting take place in groups with people with similar limitations in their ability to support the unusual experiences can be difficult when problems. patient others don’t believe the person. Talking • Help resolve family conflict through The Role of Families and Family Therapy about them with a skilled mental health sensitive response to emotional distress worker often helps. Psychological treatment Families are often on the front lines of care • Address feelings of loss is a general term used to describe meeting for persons with schizophrenia. The role of a with a therapist to talk about feelings and long-term caregiver is accompanied by many • Provide an explicit crisis plan and thoughts and how this affects a person’s life burdens and needs for family members, professional response which can leave them emotionally depleted and wellbeing. • Help improve communication among and desperate for help. Family members family members Cognitive Behavioural Therapy need support to best assist their ill family and Arts Therapies member and cope with the stress associated • Encourage the family to expand their Cognitive behavioural therapy for psychosis with schizophrenia. social support networks is a form of psychological treatment for The well-being and clinical outcome • Be flexible in meeting the needs of the which there is large body of research of a person with schizophrenia can be family 1,2,3 evidence showing that it can be helpful . significantly affected by the behaviours of The evidence suggests that about one half • Although international research family members. This does not mean that supports the use of these psychological to two thirds of people who have this type families cause the illness, which was an of therapy show benefits. The therapy treatments, it is important to note unfortunate misperception that originated in that treatments can take many forms. involves meeting with a therapist on a early work with families5. However, particular one-to-one basis for at least 16 sessions, They need to be tailored to meet the family variables strongly influence recovery person’s and family’s circumstances over the course of 6-12 months. It will from schizophrenia. Expressed emotion (EE), focus on the problems which are identified and culture. Staff, therefore, need which includes criticism, hostility, and over specialized training and skills to by the service user as important, which involvement, has been shown to be a strong might include, for example, feeling anxious undertake this work, with regular predictor of outcome in schizophrenia. support and supervision. and avoiding situations, low mood and When families of patients with schizophrenia inactivity, sleep problems, worry, coping with have high EE, there are more frequent voices, dealing with paranoid concerns or relapses in comparison to families that have traumatic experiences, or managing stresses lower EE6. Engaging families in treatment which lead to relapse. The primary goal 20 References 1 Wykes, T, Steel, C, Everitt B, Tarrier N. Cognitive behavior therapy for schizophrenia: effect sizes, clinical models, and methodological rigour. Schizophrenia Bulletin, 2008; 34:523-37. 2 National Institute of Health and Clinical Excellence. Core interventions in the treatment and management of schizophrenia in adults. Clinical guideline 82 Updated edition, London: NICE, 2009. 3 National Institute of Health and Care Excellence. Psychosis and schizophrenia in adults: treatment and management guideline update, London: NICE; 2014. 4 Freeman, D, Garety, PA (2006) Helping people with paranoid and suspicious thoughts: a cognitive behavioural approach. Advances in Psychiatric Treatment, 2006; 12:404-415 5 Keitner, GI, Heru, AM, Glick, ID. Clinical manual of couples and family therapy. Washington, DC: American Psychiatric Publishing, Inc; 2010. 6 Pharoah, F, Mari, J, Rathbone, J, Wong, W (2006). Family intervention for schizophrenia. Cochrane Database of Systematic Reviews, 2006; 4;CD000088. 7 Jewell, TC, Downing, D, McFarlane, WR. Partnering with families: multiple family group psychoeducation for schizophrenia. Journal of Clinical Psychology, 2009; 65(8);868–878. 8 Lucksted, A, McFarlane, W, Downing, D, Dixon, L, Adams, C. Recent developments in family psychoeducation as an evidence-based practice. Journal of Marital and Family Therapy, 2012; 38;101-121. 9 McFarlane, WR, Dixon, L, Lukens, E, Lucksted, A. Family psychoeducation and schizophrenia: a review of the literature. Journal of Marital and Family Therapy, 2003;29;223–246.

Philippa Garety PhD Professor of Clinical Psychology, King’s College London, Institute of Psychiatry Clinical Director and Joint Leader Psychosis Clinical Academic Group, King’s Health Partners South London and Maudsley NHS Foundation Trust United Kingdom [email protected]

Todd M. Edwards, PhD Professor and Director Marital and Family Therapy Program University of San Diego, USA [email protected]

21 COMPUTER-ASSISTED THERAPY this. It was crucial that the therapist could always been interested in sailing but had FOR PERSECUTORY VOICES control what the avatar said in order that never experienced this activity. The avatar UNRESPONSIVE TO MEDICATION: its persecutory abuse could be modified. responded by suggesting that he join a This was achieved by recording the voice of sailing club, and the patient agreed that this AN EFFECTIVE SOLUTION the therapist (myself) reading a number of was a good idea. Professor Julian Leff short paragraphs, and then Mark Huckvale Every session was audiotaped and the The introduction of anti-psychotic changed various characteristics of the recording was transferred to an MP3 player medication in the 1950s led to a great recordings to provide a series of varied voices which was given to each patient to keep. improvement in the treatment of psychotic from which the patient could select the one They were encouraged to listen to the illnesses. However not all patients responded most similar to their persecutor. It was then sessions whenever they were bothered by to this treatment. In particular one in four possible for the therapist to speak to the the voice or when they felt miserable. They patients who hear voices abusing them patient with the chosen voice and to decide were told that they now had a therapist in and /or giving them commands to harm what the voice would say in response to the their pocket! themselves or others are not helped by patient. The effect of the therapy was assessed by a medication. Their quality of life is greatly The patient was shown a variety of faces, impaired by these persistent experiences, scientific trial with random allocation of the which could be modified in a number of patients to avatar therapy or to their usual which interfere with thinking, working and ways, hair and eye colour, shape of nose, socialising. Sadly one in ten patients who treatment, which consisted of antipsychotic breadth of face, from which the patient medication and regular supervision by their are plagued by these voices commits suicide. could construct a face which represented The development of cognitive behaviour psychiatrist. The results were far better than their persecutor. Some patients knew the expected. A majority of patients experienced therapy for psychosis by British psychologists individual whose voice they heard, while has been shown to reduce the stress caused the voice or voices becoming quieter, less others did not associate an identifiable frequent and also less abusive. The patients by the voices, but does little to influence the person with the voice. These patients volume or frequency of the voices. felt they had much more control over the were asked to choose a face which they voices. One of them remarked that the When patients with these symptoms are felt comfortable talking to, and that was voices spoke much less to her because they asked about the worst aspect of their acceptable to them. knew she would answer back. There was experience, most of them reply that it is The therapy consisted of 6 sessions of up also a reduction in the patients’ depression the helplessness. However a small number to 30 minutes each. Before the first session and in suicidal thoughts. The most dramatic are able to establish a dialogue with the the patient was asked what the voice and completely unexpected effect was voices, which gives them a stronger feeling usually said. The therapist wrote this down that three patients ceased to hear their of control. The difficulty of attempting to and spoke it in the first session in the voice persecutory voice altogether: two of them interact verbally with the voices is their chosen by the patient, who was warned experienced this relief after only two sessions invisibility. In everyday life we depend heavily that this would happen, and was reassured of the therapy and one after five sessions. on the responses of the other person to that the therapist would support them They had been hearing the voices for sixteen maintain a conversation, including eye against the avatar. This was possible because years, thirteen years and three and a half contact, smiling and nodding the head. the therapist, who was sitting in a room years respectively. Of course none of these are available from some distance from the room occupied by It needs to be stated that by no means all of the voices. Furthermore what the voices the patient, had a separate screen which say are usually brief repetitive phrases, such the patents had such good outcomes. Two allowed him to choose either to speak in the patients heard multiple voices that spoke so as ‘punch yourself in the face’, which are changed voice as the avatar or in his natural unrelated to what the patient is saying to loudly that they could not concentrate on voice as the therapist. So the therapist was the avatar. Others were threatened by their them. It seemed to me that if it was possible playing two roles in sequence: either as to give the invisible voice a human face voice with harm to them or their relatives the persecutory avatar or as the supportive if they proceeded with the therapy. Avatar which was responsive to the patient they therapist. The patient was unaware of this might be better able to establish a dialogue. therapy therefore is not suitable for all voice- and all but two of the 16 patients who hearers. However the results of the trial were In thinking about this possibility it occurred received the therapy accepted the avatar impressive enough to justify a much larger to me that an avatar would be a solution. without question as the voice they heard. study, and this has now been funded and is Avatars are computer generated images In the course of the 6 sessions of therapy, well under way. It is planned to take three that are now universally used in computer the therapist progressively changed years to complete. If it successfully replicates games, with which even young children the character of the avatar, altering its the findings of the first trial a major effort are familiar. What I needed was something relationship with the patient in that it will be made to develop a portable version more specialised, namely an avatar that gradually stopped its abuse and allowed of the computerised system to make it the patient could create, with a face that the patient to take control of it. Eventually available to all who could benefit from it. they believed belonged to the voice, and the avatar acknowledged the good qualities a voice that approximated to the one that of the patient and offered advice on how Professor Julian Leff was persecuting them. I worked with the patient could improve her/his life. For Emeritus Professor two speech scientists, Mark Huckvale example one patient who complained Institute of Psychiatry, King’s College London United Kingdom and Geoffrey Williams, who developed a of loneliness was asked if he had any computerised system that would achieve hobby. The patient replied that he had 22 CO-MORBIDITY AND metabolic syndrome is central obesity, It is now established that those with SCHIZOPHRENIA: PHYSICAL easily measured by waist circumference, mental health problems do not receive HEALTH IN PEOPLE WITH along with abnormalities in 2 of the equal access to medical services, due following parameters; low HDL (high to poor provision of services to conduct SCHIZOPHRENIA – THE FACTS density lipoprotein) cholesterol level, health checks, stigmatisation, and lack of Dr. Helen L. Millar elevated triglyceride, high blood pressure awareness and education of family doctors. Prof Mohammed Abou Saleh and elevated blood glucose. (Metabolic There is now increased awareness amongst syndrome IDF definition 2005) psychiatrists and other health professionals A Patient perspective Whilst cardiovascular and metabolic that people with schizophrenia suffer from diseases occur more commonly in people “It seems that once you have a mental an increased risk of morbidity and mortality with schizophrenia than the general health diagnosis any physical symptoms compared to the general population. population, other physical health problems you experience are instantly assumed Unaddressed physical illnesses in this such as infections, neoplasm and medical to be part of your diagnosis. Once that population can lead to a reduced life complications of alcohol and drug misuse assumption is made it is difficult to expectancy of up to 20 years. Two thirds of are also more frequent and have a greater get anyone to attempt to disprove it.” the premature deaths in this population are impact on individuals with schizophrenia. Rethink anonymous mental illness person due to physical illnesses, with cardiovascular Therefore it is essential to recognise physical comment” (2013) disease (CVD) being the major contributor. illnesses early on and treat them without Those suffering from schizophrenia are In addition, people with schizophrenia delay. twice as likely to die from CVD as those in are less likely to seek medical treatment the general population. for physical illnesses, which can delay making a diagnosis and getting treatment Several modifiable risk factors contribute to Sources of risk associated with for many years. This can lead to a poor the increased risk of CVD in this population. physical health problems prognosis and ultimately reduced life Of note, the total risk is significantly greater expectancy. than the sum of the individual risk factors Although many risk factors, modifiable added together, suggesting an accumulative and non-modifiable, contribute to the It is commonly known that people with effect. As a result there has been an poor physical health of people with the illness are more likely to eat diets high increasing concern about physical health schizophrenia, the increased mortality is in saturated fats and refined sugar but in people with schizophrenia, specifically largely due to the modifiable risk factors low in fibre and little in the way of fruits CVD. People with schizophrenia are also - many of which are related to lifestyle and vegetables. choices which we can alter. more likely to be overweight, smoke, Exercise and physical activity are more and have diabetes, hypertension and Risk factors which are non-modifiable limited due to lack of mental wellbeing, dyslipidaemia (abnormal fats). This cluster include your genetics, age and gender. poor motivation/drive, lack of structure of risk factors, including impaired glucose There is growing evidence that there may to life, and at times lack of prioritising tolerance, central obesity, hypertension be a genetic link between schizophrenia financial resources. and dyslipidaemia, has been described as and the development of physical health metabolic syndrome. problems such as glucose intolerance They are more likely to smoke excessively leading to diabetes. and misuse alcohol and drugs, resulting The incidence of metabolic syndrome in worse mental, physical and social in people with severe mental illnesses Modifiable risk factors are those factors outcomes, with increased relapse rates, is 2-3 times greater than the general which we can influence to improve physical homelessness, unemployment, family population. The surrogate marker for health in this population. breakdown and criminality. The mainstay of treatment for people Measurements for monitoring physical health in SMI with schizophrenia is antipsychotic patients with baseline values medication. There is now a greater choice of medication for the treatment Baseline 6 3 months At least at 12 months weeks and annually thereafter of the illness. The second generation Personal and family X of antipsychotics, called the ‘atypicals’, history provides more effective treatment options, Smoking, exercise, dietary X X X X habits with a reduction in movement disorders. Weight X X X X The aim is to optimise mental and physical Waist circumference X X X X wellbeing, but some of these medications Blood pressure X X X X have an increased risk of cardiovascular Fasting plasma glucose X X1 X X Fasting lipid profile X X1 X X and metabolic problems including ECG parameters X coronary artery disease, weight gain, lipid Prolactin X2 X3 X3 abnormalities and Type II Diabetes. Dental health X X

1 This early blood sugar and lipids assessment has been recommended in Europe, but not in the US 2 If possible to have some reference values, or, if this is too expensive, only in case sexual or reproductive system abnormalities are reported 3 Only in case of sexual dysfunction that coincided with antipsychotic treatment or dose change WPA recommendations De Hert et al., World Psy 2011

23 How do we work together Physical Activity effects can be minimised. It is important to improve physical health in • 30 minutes of moderate exercise at to choose a medication that gets the best people with schizophrenia? least 5 days per week- a brisk walk for risk/benefit and meets the patient’s needs. 30 minutes, 5 days/week. Medication choices need to be fully The good news is that health care • Change lifestyle to incorporate exercise discussed before initiation, working professionals, people with schizophrenia - walking, using stairs, cycling collaboratively with the patient and his/her and carers/families are now much more carer. The individual should be engaged • Agree goals and provide written aware of the risk of physical health in the decision making process regarding evidence about the benefits problems in people with this illness. We the medication or any switching. It is are now in a better position to provide Tip: It is not essential to join a gym but important that a switch to an alternative education and support in the form of changing lifelong bad habits can make a lower risk medication is considered when health checks and lifestyle management. dramatic difference - be more physically there are risk factors such as obesity or As a consequence individuals with active! diabetes. When a switch is considered schizophrenia will be more informed all aspects of the patient’s mental and Weight Management and have the opportunity to engage physical wellbeing must be considered with lifestyle programmes enabling • Offer advice on weight management carefully and discussed openly with the them to take more responsibility and and how to achieve a healthy weight individual and the carer/family member. make decisions about their own physical and maintain it wellbeing. Tip: set realistic targets for weight Care of people with schizophrenia must reduction and then maintain weight Conclusions be person-centered and collaborative, There are still major challenges for health taking into account the patient’s needs Alcohol Consumption care professionals to work with people and preferences so that they can make • Advise men 3-4 units per day limit (no with schizophrenia to improve their informed decisions about their physical more than 21 units per week) physical health outcomes and manage co- and mental wellbeing. Through effective • Women 1- 2 units per day (no more morbidity effectively. A person-centered communication, providing evidence-based than 14 units per week) integrative model with psychoeducation information and adopting a proactive empowers patients to make informed approach, there is no reason why people Tip: Avoid binge drinking - stick to the decisions about their treatment plan and with schizophrenia cannot live long and recommended units! lifestyle management. This enables the healthy lives. Smoking Cessation patient and the family to play a significant Health checks for people with • Advise all people to stop smoking role in the treatment and monitoring of schizophrenia are essential to monitor • Offer support and advice: include physical health. cardiovascular and metabolic risk factors pharmacotherapy and smoking cessation The WFMH International Keeping Care along with general health screening. The Complete survey demonstrated the World Psychiatric Association recommends Tip: the best advice - stop! importance caregivers placed on overall the checks listed in the following chart. Sexual Health wellness, with 99% saying the goal of • Sexual health education to reduce treatment should be to maintain wellness Lifestyle management for high risk practices leading to sexually defined as the condition of both physical and mental health. prevention of physical health transmitted diseases. problems Tip: use safe practices at all times. Although there is an increased awareness in this area, more education is required Regular medication reviews and switching Simple tips regarding changes in lifestyle for health care professionals, patients if necessary can have a dramatic effect on long terms and carers/families to improve outcomes outcomes and life expectancy. It is essential when people with and increase life expectancy. By adopting schizophrenia are treated with a person-centered approach there is Cardio-protective Diet antipsychotic medication that there is an opportunity to improve the overall • Cut down on fatty foods regular monitoring of medication. physical and mental wellbeing of people • Increase fish intake Psychiatrists have a specialist role in with schizophrenia. Simple lifestyle changes with regular health checks • Increase fruit and vegetables - five initiating antipsychotic medication, and review of medications can optimise portions /day monitoring potential adverse effects and offering advice on switching treatment and improve the overall quality • Decrease processed food, medication to a different ‘lower risk’ of life for people with schizophrenia. • Minimise sugar/sugary drinks medication where and when necessary. Tip: Be more aware of healthy foods, It is essential that psychiatrists work learn to cook, go healthy food collaboratively with the family doctor, shopping. the patient, and the family/care giver to improve understanding of the prescribed medication and how potential adverse

24 References 1. World Psychiatry Educational Module, Marc de Hert (World Psychiatry 2011;10:52-77) . 2. World Psychiatry Educational Module, Marc de Hert (World Psychiatry 2011;10:138-151) . 3. NICE Lipid Modification Quick reference guidelines 67ehttp://www.nice.org.uk/nicemedia/ live/11982/40675/40675.pdf 4. http://www.rethink.org/media/534440/good_ health_guide_for_email1(1).pdf 5. The physical health challenges in patients with severe mental illness: cardiovascular and metabolic risks: Deakin et al. Journal of Psychopharmacology, Vol 24 8(Suppl 1), Aug 2010, 1-8. doi: 10.1177/1359786810374863 6. Keeping Care Complete Survey. WFMH: wfmh. org. 7. Lancet 2005 ; 366:1640−1649. Available at www.idf.orgAlberti KG et al. 8. Rethink : Lethal Discrimination. Sept 2013 9. Wilson PWF et al. Circulation. 1998;97:1837– 1847.

Dr Helen L Millar, M.B.Ch.B., M.R.C.Psych. Consultant Psychiatrist Carseview Centre Scotland, United Kingdom

Professor Mohammed Abou-Saleh St George’s, University of London United Kingdom

25 THE IMPORTANCE OF CARERS for someone with schizophrenia takes of stress for their relative and help them IN SUCCESSFULLY LIVING WITH time, energy, financial and emotional cope with it (Giron, 2010). In a two-year SCHIZOPHRENIA resources (MacCourt, 2013). In addition randomised controlled study, 50 people to activities of daily life, carers often with schizophrenia were separated into “Mental health services have a duty to monitor symptoms, manage problematic two groups , half of participants received carers in recognising the valuable role behaviours, situations and crises, provide family intervention (intervention group) they play and in ensuring they are aware companionship, as well as emotional and half did not (control group). Only 12% of the support available to them. This is and financial support (MacCourt, 2013). of patients in the family intervention group not just in terms of practical support, but Unfortunately, carers report higher experienced a clinical relapse compared also emotional support which can make levels of burden, distress, stress, anxiety, with 40% of patients in the control a huge difference to a carer’s own health depression and lower levels of life group. More patients in the intervention and wellbeing.” Stephen Dalton, chief satisfaction (MacCourt, 2013; Schulze and group also experienced improvements in executive of the NHS Confederation’s Rossler, 2005). functioning compared with the control group (56% vs 28%, respectively). Mental Health Network in the UK (ImROC, Carers fulfil a distinct and important role by Interestingly, no patients in the family 2013) providing support and advocating for their intervention group experienced a major Schizophrenia is a chronic, disabling mental ill relatives as well as contributing to their incident compared with 32% of patients in illness that affects a person’s ability to think recovery (MacCourt, 2013). Therefore, it the control group (Giron, 2010). clearly, manage emotions, make decisions, is important to educate, support and ease relate to others and identify what is real. the burden of those who care for people “It is deeply painful for anyone to interact Schizophrenia affects approximately 24 with schizophrenia (Awad and Voruganti, with a loved one whose behaviour is million people worldwide, mainly people 2008). Over the years, a number of family determined by a mysterious internal aged 15–35 (WHO, 2011) and the World interventions have been develop to help mechanism that has gone awry. But with Health Organization has ranked it among people with schizophrenia and their carers support and education, carers can be the top-10 leading causes of years lost to receive education about the disease taught to recognize impending symptoms to disability (WHO, 2004). Because the and training in problem solving (The of relapse and help their loved ones avoid onset of schizophrenia occurs in late Royal Society of Medicine Press, 2000). situations that might trigger them.” NY adolescence or early adulthood, the illness Education improves a carer’s knowledge Times in-depth health report (A.D.A.M., has a devastating impact on a person’s of schizophrenia, but supportive family 2008) education, job opportunities and on education goes beyond giving information Carers are in a position to intervene their capacity to have a family or a social about mental illness and gives carers the early before the symptoms of a potential life (Bevan, 2013; Lieberman, 2001). tools to develop strategies to cope with episode worsen, the situation escalates Nevertheless, with the right medication, a the burden of caring for someone with and the person with schizophrenia tailored plan of care and support services, a mental illness (Macleod, 2011). People needs to be hospitalised (Giron, 2010). most people with schizophrenia can cope with schizophrenia who have participated Early intervention means providing with their symptoms, maximise their in family intervention sessions have information, assessment and treatment functioning and minimise their relapses experienced a reduction in the number at the earliest possible time when (Duckworth, 2011). of relapses as well as in the number and the person with schizophrenia starts In recent decades, there has been a the length of psychiatric hospitalisations experiencing psychotic symptoms, and fundamental change in the way that (Giron, 2010). With the appropriate the complications that can arise from people with mental illness are cared for. training and support, carers can identify untreated psychosis take hold (Lieberman, Community-based care and prevention sources of stress and intervene early on in 2001). Despite the essential role that is now preferred over long-term a crisis situation to prevent major incidents, carers have, they are highly exposed and hospitalisation, and the responsibility such as suicide attempts, fights, substance caring for a relative with mental illness is for care has shifted from hospitals to abuse, vagrancy or risky behaviour (Giron, related to high personal suffering, feelings informal carers, such as a relative (Schulze 2010). Family interventions can have a of guilt, helplessness, fear, vulnerability, and Rossler, 2005). Family members are significant impact on negative symptoms anxiety and anger (WFMH, 2009). the likely primary carers of people with and can help people with schizophrenia Given that the frequency and intensity schizophrenia. A survey of 982 carers, improve their motivation to engage in of psychotic episodes is unpredictable, conducted by the World Federation for social activities and relate to other people coping with such a condition poses Mental Health in Australia, Canada, as well as provide them with a positive ongoing challenges to family carers Germany, France, Italy, Spain, the United outlook to get a job (Giron, 2010). In this (MacCourt, 2013). Most family carers Kingdom and the United States between respect, family interventions have a dual would benefit from receiving information, November 2005 and June 2006, revealed effect, first by creating a more stimulating education, guidance and support that carers can spend more than 10 family environment that encourages (MacCourt, 2013). When asked about hours per week caring for their relative opportunities for activities that may help what would most support them in their (WFMH, 2013). Often carers will give up reduce negative symptoms, and second role, carers reported that they needed their job or take time off work to provide by providing an environment that may (MacCourt, 2013): care and support for a family member reduce the intensity of positive symptoms (Mangalore and Knapp, 2007). Caring by helping carers identify potential sources

26 • To know that the person they care appropriate education, training and 897. for was receiving adequate care and support, carers can have the tools to MacCourt, P., Family Caregivers Advisory services, and that their loved one was develop strategies to cope with the Committee and Mental Health Commission of Canada. 2013. able to achieve a reasonable quality of burden of caring for someone with Macleod, S. H., L. Elliott and R. Brown. “What life schizophrenia. Timely and adequate support can community mental health nurses deliver to carers of people diagnosed with • To have their relationships and role support for carers will empower them to intervene early before the symptoms schizophrenia? Findings from a review of the as carers recognized by mental literature.” Int J Nurs Stud 2011:48(1): 100-120. of a potential episode worsen and the health service providers and to be Mangalore, R. and M. Knapp. “Cost of meaningfully involved in assessment situation escalates, and thus improving schizophrenia in England.” J Ment Health Policy and treatment planning the quality of life of those in their care. Econ 2007:10(1): 23-41. Schulze, B. and W. Rossler. “Caregiver burden in • To receive information, skills, support mental illness: review of measurement, findings and services from knowledgeable and interventions in 2004-2005.” Curr Opin References Psychiatry 2005:18(6): 684-691. mental health service providers to A.D.A.M., 2008. “Schizophrenia In-Depth Report” The Royal Society of Medicine Press, 2000. enable them to effectively provide Retrieved June 2014, from http://www.nytimes. “Effective HealthCare: Psychosocial interventions care to the person living with a mental com/health/guides/disease/schizophrenia/print. for schizophrenia”, Accessed April 2014, from illness html. http://www.york.ac.uk/inst/crd/EHC/ehc63.pdf. Awad, A. G. and L. N. Voruganti. “The burden WFMH, 2009. “Caring for the caregiver: Why • To receive support and services for the of schizophrenia on caregivers: a review.” your mental health matters when you are caring family and its individual members to Pharmacoeconomics 2008:26(2): 149-162. for others”, Accessed April 2014, from http:// sustain their health Bevan, S., J. Gulliford, K. Steadman, T. Taskila, wfmh.com/wp-content/uploads/2013/11/WFMH_ R. Thomas and A. Moise, 2013. “Working GIAS_CaringForTheCaregiver.pdf. The needs and challenges that carers face with Schizophrenia: Pathways to Employment, WFMH, 2013. “Keeping Care Complete Fact will change as the illness of their relative Recovery & Inclusion”, Accessed April 2014, Sheet: International Findings”, Accessed April from http://www.theworkfoundation.com/ 2014, from http://wfmh.com/wp-content/ progresses, but it will also depend on the downloadpublication/report/330_working_with_ uploads/2013/12/International-Findings-Fact- individual characteristics of the carer, their schizophrenia.pdf. Sheet.pdf. social networks and personal resources Duckworth, K., I. Gottesman and C. Schulz. T. N. WHO, 2004. “The Global Burden of Disease”, (MacCourt, 2013). Therefore, timely and A. o. M. I. (NAMI). 2011. Accessed April 2014, from http://www.who.int/ healthinfo/global_burden_disease/2004_report_ adequate support for carers will not just Giron, M., A. Fernandez-Yanez, S. Mana- Alvarenga, A. Molina-Habas, A. Nolasco and update/en/. benefit the carer but also the person living M. Gomez-Beneyto. “Efficacy and effectiveness WHO, 2011. “What is schizophrenia?”, Accessed with schizophrenia as the health and well- of individual family intervention on social and January 2014, from http://www.who.int/mental_ being of carers will have a direct effect on clinical functioning and family burden in severe health/management/schizophrenia/en/. schizophrenia: a 2-year randomized controlled the person living with the disease. study.” Psychol Med 2010:40(1): 73-84. Schizophrenia is a disabling mental illness ImROC, 2013. “What can mental health services do to support carers?” Retrieved June 2014, from that affects the life of both the people http://www.imroc.org/what-can-mental-health- affected by it and those who care for servicest-do-to-support-carers/. them. Carers fulfil the indispensable role Lieberman, J. A., D. Perkins, A. Belger, M. Chakos, of providing support and advocating F. Jarskog, K. Boteva and J. Gilmore. “The early stages of schizophrenia: speculations on for those with mental illness as well pathogenesis, pathophysiology, and therapeutic as contributing to their recovery. With approaches.” Biol Psychiatry 2001:50(11): 884-

HERE IS SOME ADVICE FOR HELPING A PERSON WITH SCHIZOPHRENIA eHealthMD • Try not to show overt anxiety or distress. Avoid harsh or • Remember that schizophrenia is a medical illness. Do not direct criticism. feel ashamed because someone in your family has it. • Compliment on achieved goals without being effusive in • Do not feel guilty or seek someone to blame. Schizophrenia your praise. is nobody’s fault. Acceptance is important. • Realize that caring for the person can be emotionally and • Educate yourself about your relative’s personal symptoms. physically exhausting. Take time for yourself. Early clues, such as changes in sleep patterns or social • If the person can no longer be cared for at home, speak withdrawal, can indicate that a relapse may be happening. with the doctor about alternatives for care. • Establish a daily routine for the person to follow. Read more: http://ehealthmd.com/content/how-can-family- • Help the person stay on the medication. help#ixzz33VihVuIE • Let the person know that he or she is not facing the illness alone. Keep lines of communication open.

27 section IV RECOVERY is possible

FINDING RECOVERY WITH and friends. This is what the big S felt like like to be me. My road to recovery really SCHIZOPHRENIA from inside of me. There was no hope, began with that human connection and no future and no reason to even breathe. understanding. Recovery was learning Janet Paleo Most of all, I wondered why God hated from others who had experienced Schizophrenia. Even the mention of the me so much. schizophrenia and gone on to have a life word can send a shudder through a worth living. Recovery was people seeing person, a wave of fear through a crowd, Back then, I never heard the word ‘recovery’ or anything about getting the potential in me and investing in me. or alienation in a community. When the Recovery was beginning to see hope word is being said about you, there is a better. I was in a psych hospital for two years. I lied to get out. I got my and a future. When we start focusing on shock of disbelief, anger and fear. I know. those elements, I believe we can make I was diagnosed with schizophrenia. daughter and retreated to my home state and began a multi-year process a significant difference in the world. This was not a good time in my life. I of trying to hide from everyone and Recovery is possible. I know. I am the was hospitalized with severe acute major everything. During this time I easily had proof. depression and while still in the hospital a over 50 hospitalizations. I hated life and Today my life is full, rich with hope and year later that diagnosis was changed to everything about life. There was one thing dreams. I work full time for the Texas the big S (schizophrenia). All in all, I have I hated more than life and that was me. Council of Community Centers as the had nine different diagnoses. The big S Director of Recovery Based Services. I sit scared me the most. A psych tech once asked me to describe the pain in me. Where was it located? on the Board of the World Federation I had heard about people with How did it feel? How could I ever express for Mental Health. I am the founder of schizophrenia. They were nothing short to anyone this overwhelming, piercing Prosumers International and have created of uncontrollable monsters and now I was agony that lived within me? There was a three day resiliency training called one of them. I always tried to be a good no relief, no respite; no escape except for Focus for Life along with Anna Gray. I girl. I never told the secrets when I was the retreat within my head. Some called it own a home in San Antonio and keep an young. I never hurt other people even if psychosis, I called it relief. apartment in Austin. I travel around the they were hurting me. I had met a lot of world, often as an invited speaker. At the monsters and I never thought that would Through a series of events that offered age of 57 I swam with the dolphins. I am include me. my first glimpse of hope, I finally found an instructor in Mental Health First Aid the road to recovery. To be sure it was a and in Intentional Peer Support. I sit on I sank into despair and that is all I could long road full of potholes and at times state policy committees and testify before see in my world which almost left me I had to go backwards to go forwards. legislators. I am busier than people half comatose. At the same time my insurance I found tools and skills to neutralize my my age. I love my life. More importantly, ran out, my daughter went from living past. Nothing could make me forget, but I finally love me. I no longer need to with friends to being in a foster care the power those memories had over me protect myself from the pain. When I say system and my job, which had been held disappeared. I found a purpose in life. I recovery, I mean having a life worth living. for me, closed. The house I had been realized what strength I had to survive paying my share of the rent on was no the life I had been given. I also realized The time has come for us to make longer available as my roommates decided that God had not forsaken me, but was recovery available to everyone. Everyone they didn’t want to live there anymore. preparing me for the life I have now. deserves that chance. My world turned chaotic. Voices filled I had to go through all of that misery Janet Paleo to become the person I am today. Like my head. Shadows of people haunted Director of Recovery Based Service, Texas Council me and only I could see them. Bugs a diamond, I was put under extreme of Community Centers, USA crawled on my skin and I could not see pressure for an extended period of time, Board Member, WFMH them. I remember withdrawing into a and emerged a hard crystal that can shine [email protected] fantasy world where I couldn’t hear or brilliantly. see anyone. I was lost in a world and It was not the medication I was given, and wandered aimlessly in my mind only there was a lot. It was not the therapy wanting life to stop. I was given, and there was a lot of that I tell you this, not to scare you but to have as well. It was a person who had gone you understand my experience. Doctors through her own version of hell who gave up on me and so did most family had an understanding of what it was

28 THE IMPORTANCE OF HOLISTIC enabling a person with schizophrenia needs, including psychological, physical CARE FOR PEOPLE LIVING WITH to function in society. The need to and social, should be taken into account SCHIZOPHRENIA find places in the community for and seen as a whole. The mental health patients to live led to a wide range of consumer movement has also been a Gabriel Ivbijaro, Sir David Goldberg, Henk Parmentier, Lucja Kolkiewicz, Michelle Riba, accommodation being made available, force that places emphasis on a more Richard Fradgley and Anwar Ali Khan and that has undoubtedly normalised the positive view of the outlook, and more World Mental Health Day 2014 on the experience of living with schizophrenia. holistic care may hold the key to still theme Living with Schizophrenia provides The introduction of the Care Programme further improvements. The term goes an opportunity to reflect on what we as Approach in the 1980s in the UK, for well beyond the usual medical model individuals and families are doing, and example, led to individual care plans of services provided either by specialist will continue to do, for people living being made for patients, with routine mental health teams or by primary care, with schizophrenia—and also to reflect care in the community being provided and should cover care provided by others on what organizations and government by a community psychiatric nurse (CPN). such as housing support workers, informal departments are doing. Finally, the progressive reduction in the carers and others such as neighbours and number of in-patient beds in the UK concerned family members. For too long, and perhaps because of has led to the steady decrease in the a lack of understanding, receiving a Since recovery is possible we need to average length of stay, with increasing adopt a holistic approach to care that diagnosis of schizophrenia tended to use of the “revolving door” of in-patient suggest an inevitable deterioration.1,2 will address the social determinants units. Schizophrenic patients living in the of mental ill health, including poverty, Even early longitudinal studies 3 showed community are registered in the UK with that this view was too pessimistic, since housing and living conditions, nutrition, a general practitioner (GP), and this has education, employment, unsafe social studies in the pre-neuroleptic era showed led to an improvement in the clinical skills a good outcome in one third of cases, and community networks, empowerment of GPs themselves. A modern community- of women and support for the parenting although with “profound deterioration” based mental illness service no longer sees in 46% of Swedish patients admitted role, access to immunisation programmes the severely deteriorated cases that were and universal access to primary health in 1925. Studies since the neuroleptics seen during the asylum era, and both became available are considerably better, care facilities integrated with other social community-oriented services and modern and health care systems. 9 with complete recovery varying between drug treatment may be responsible for the 17% and 35% in various longitudinal better outcomes now reported. There have been many initiatives to studies. In the WHO international study advocate for and promote health values, of schizophrenia, although outcome in Despite these undoubted improvements, including the recent UN Millennium developed countries was comparable to the WHO mhGAP Programme showed Goals programme10. Unfortunately, these rates (36.8%), that in developing that many people with schizophrenia many people with schizophrenia have countries was much higher (62.7%) 4. In a globally have little or no access to not enjoyed these universal benefits. In 6 follow up study of people with psychotic health care and have poor outcomes. England, only 5-15% of people with illness in 14 countries, 25 years after Surprisingly this is not limited to middle- schizophrenia are in employment and, onset of the disorder 48.1% of those or low-income countries. Surveys show when you consider that schizophrenia is initially diagnosed with schizophrenia that up to 40% of people diagnosed an illness of young people, this statistic and 56.2% of those initially diagnosed with schizophrenia in the USA have not illustrates that many people with 7 as having “other psychoses” were rated received mental a health intervention . schizophrenia are trapped in a net of as recovered, while 42.8% of those with Recovery will not be possible without poverty which makes them unable to schizophrenia and 49.5% of those with enhancing access to and improving the move on in their lives. Supporting people “other psychoses” had not been psychotic quality of services that people receive. into, or back into, employment is an over the past 2 years5. There have been global improvements in important goal for health intervention and This story needs to be told in order to health and health outcomes, and people health promotion programmes, and also provide hope to the people who are living are living longer in high-, middle- and starts to address the stigma surrounding 11 with schizophrenia, and their families low-income countries. Unfortunately mental ill health and promotes recovery . for those people with mental health and friends. It provides an opportunity to How can we promote further recovery problems, especially schizophrenia, life continue to tackle the stigma and the lack and holistic care? of dignity associated with the wrongly expectancy can be up to 20 years less than the rest of the population. This is The concept of psychosocial rehabilitation held belief that schizophrenia results in has led to the introduction of client inevitable deterioration. unacceptable and should not be allowed to continue8. There is therefore a need for choice, and appreciation of strengths and From the 1950s on there followed a further improvements in arrangements empowerment. There was a recognition period of de-institutionisation, where that are made for the care of people with that in the aftermath of the acute illness major emphasis was placed on various long-term schizophrenia. there was a need to place an emphasis forms of rehabilitation, most notably on regaining everyday skills, including industrial forms, but also including Holistic Care of Schizophrenia use of public transport, self-maintenance, agricultural exposure and other forms The holistic concept in medical practice vocational skills and social interaction of vocational experience, all aimed at maintains that all aspects of people’s skills. This sowed the seeds for the

29 consumer movement that led to the and family and caregiver support and had been a 15% increase in the cost of concept of recovery12, 13, 14. education; post-hospital patient care supported placements for people with mental health problems year on year. This Consumers, service users, patients and protocols; and enhanced access and 17 has now been halted whilst improving their loved ones have moved the idea tracking of emergency department care . the quality and range of housing-related of recovery forward to clearly articulate Two examples from East London, UK, support available. The key lesson learned what recovery should look like. In many provide examples of holistic care in action. from the project was that, to make real countries the recovery movement has The first, a joint collaboration between change, health and social care providers provided a framework for intervention, the London Borough of Tower Hamlets18 need to collaborate so that appropriately support and preventive services. A good and East London National Health Service supported housing can be commissioned. working definition was agreed during a Foundation Trust, shows how supported This has required high level trust between 2004 meeting convened by the Center housing can be better used to support different organisations and senior for Mental Health Services of the US recovery and social inclusion for adults managers who believe in the project. Substance Abuse and Mental Health with mental ill health. The project began in Services Administration, where it was 2009 when both the Local Authority and The second example, a project from stated that: the local mental health provider realised Waltham Forest in East London, began in 2011 with an eighteen-month Mental health recovery is a journey of that there was a need to improve housing £150,000 grant from NHS London19 healing and transformation enabling a support and procurement for people . person with a mental health problem to with long-term mental health problems, This primary care project piloted the role live a meaningful life in a community of particularly those with schizophrenia. A of Navigators who are non-doctors and his or her own choice whilst striving to team was set up to promote a whole- non-nurses trained in understanding the achieve his or her full potential.15 This is systems approach to more effectively local community resources. They harness a definition that all of us can sign up to, manage the accommodation and the advantages provided by the wider whatever our personal or professional resettlement needs of adult mental health determinants of health for mental health background. Living with schizophrenia service users across the range of supported service users with long-term mental health and supporting recovery can only housing options, including registered care problems, particularly schizophrenia, happen using a holistic approach and by and high-, medium- and low-supported including the better use of primary and applying holistic understanding. To unlock accommodation. The team ensured that secondary care resources. Their roles everybody’s true potential requires good people with mental health problems include supporting concordance with leadership in the context of an anti-stigma were proactively managed to live in medication, enhancing engagement with campaign to promote social inclusion, accommodation relevant and appropriate social networks and resources including early intervention in schizophrenia in the to their level of need, with a robustly libraries, sports facilities and volunteering context of strong prevention measures, constructed care plan which had a clear opportunities, and also improving the the provision of evidence based practice focus on rehabilitation and recovery. uptake of health screening programmes and parity of mental and physical health A renewed emphasis was placed on by people with mental health problems, care to address premature mortality. quality and service user experience while promoting dignity and de- stigmatisation. So far 185 patients from The WHO Global Mental Health Action in registered care and supported accommodation through reviewing care 17 GP primary care practices, supported Plan 2013-202016 provides us all with by four Navigators, have participated in a new opportunity to put the spotlight plans when making planning placements underpinned by Individual Placement the project and preliminary evaluations back on mental health. We know that are positive. There has been a reduction there are islands of good practice in all the Contracts. The Local Authority increased the number of mainstream tenancies in hospital re-admissions and increased continents of the world but they need to uptake of social activities, including become the norm, not the exception. made available for people with mental health problems to support social use of library facilities, re-engagement In the United States, the Patient-Centered inclusion. Value for money was enhanced with employment and education, and Medical Home (PCMH) is being promoted by using well-developed brokerage increased patient satisfaction. as a means to improve access to primary expertise to negotiate the price of Waltham Forest is planning to scale up care, enhance delivery of preventive registered care placements on a case-by- this service in collaboration with other services, better manage chronic diseases, case basis, ensuring that price is based on areas of East London. The project will and decrease emergency department visits evidence of service user need and local adopt a range of principles to ensure and hospitalization. While this model will market cost. success, including care planning unique work best in highly integrated medical This project has enabled more people to the patient, an integrated approach systems, there are opportunities for all across primary, secondary and social care, patients, high or low utilizers, to benefit with long-term mental health problems to share and enjoy similar aspirations data sharing underpinned by a good IT from some of the approaches embedded system, and ensuring that the patient in the concepts surrounding the PCMH, as the rest of us for independent living, recreation, employment, social and their family remain at the centre of and thereby providing more holistic care. Waltham Forest is happy to share its patient-centred care. Some approaches relationships, material goods and cultural needs. It also provides value for money learning with people who would like to for outreach and monitoring will include know more about this initiative. smart phone technologies, home visits, for those who fund services. In the five years before the project started there 30 Low- and Middle-Income References 16. World Health Organization. The Global Mental Health Action Plan 2013-2020. www. Countries (LAMIC) 1. Kraepelin E (1919) Dementia pracox and who.int /mental health/mhGAP…global_mental_ paraphrenia. Barclay RM, trans-ed. Edinburgh: E health_action_plan_2013../en These examples from high-income and S Livingstone. 17. Schwenk T: The Patient-Centered Medical countries cannot easily be generalised to 2. Bleuler E (1911) Dementia Praecox on the Home. One Size Does Not Fit All. JAMA February the rest of the world, where expenditure Group of Schizophrenias. Vienna. 26, 2014, Vol 311, No 8, pp 802-803. on mental health is a tiny fraction of that 3. Jonsson SA, Jonsson H (1992 Outcome in 18. Supported housing in Tower Hamlets (http:// untreated schizophrenia in the pre-neuroleptic spent in the UK and USA. A 2001 Institute www.towerhamletsccg.nhs.uk/Get_Involved/ era. Acta Psychiatrica Scand, 85, 313-320. Tower%20Hamlets%20Mental%20Health%20 of Medicine report on mental illness in 4. Jablensky A Course and Outcome of Strategy%20Full%20Version.pdf) low- and middle-income countries found Schizophrenia and their prediction, in Gelder 19. Primary Care Project in Waltham Forest (http:// that in 1990, over two-thirds of people M, Andreasen N, Lopez-Ibor J, Geddes JR New www.walthamforestccg.nhs.uk/Downloads/News- with schizophrenia in these countries were Oxford Textbook of Psychiatry. Oxford: OUP 2009, and-publications/POLICIES/Better%20Mental%20 pp 568 – 578. Health%20strategy%20FINAL.pdf). Institute of 20 not receiving any treatment . Patel argues 5. Harrison G, Hopper K, Craig T et al. Recovery Medicine report, Washington DC. (http://www. that since there is less than one qualified from psychotic illness: a 15- and 25-year nap.edu/catalog/10111.html) mental health professional for half a international follow up study. British Journal of 20. Institute of Medicine report, Washington DC. million to a million people, most people Psychiatry 2001, 178; 506-517. (http://www.nap.edu/catalog/10111.html) with schizophrenia in LAMIC probably 6. WHO (2008) mhGAP. Mental Health Gap 21. Patel V., Farooq S., Thara R. What is the best Action Programme. Scaling up care for mental, approach to treating schizophrenia in developing receive little or no formal care. Despite neurological and substance use disorders. WHO: countries? PLoS medicine. 4 (6) (pp e159), 2007. these scarce resources, there is now Geneva. 22. Patel V, Maj M., Flisher A.J., De Silva M.J.,et al. growing evidence that antipsychotic drugs 7. Mojtabai R, Fochtmann L, Chang S-W, Kotov R, Reducing the treatment gap for mental disorders: and community-based, family-focused Craig TJ, Bromet E. Unmet need for mental health A WPA survey. World Psychiatry. 9 (3) (pp 169- care in schizophrenia: an overview of literature 176), 2010. interventions are effective treatments, and new data from a first admission study. 23. Chatterjee S., Pillai A., Jain S., Cohen A., Patel and the lion’s share of the service delivery Schizophrenia Bulletin. 2009; 35(4): 679-695. V. Outcomes of people with psychotic disorders would need to be the responsibility of 8. Thornicroft G. Physical health disparities and in a community-based rehabilitation programme non-specialist health workers21. mental illness: the scandal of premature mortality. in rural India. British Journal of Psychiatry. 195 (5) British Journal of Psychiatry. 2011; 199: 441-442. (pp 433-439), 2009. A survey of psychiatrists in nearly 60 9. WHO/Wonca (2008) Integrating mental health 24. Balaji M., Chatterjee S., Koschorke M., countries on the strategies for reducing into primary care: a global perspective. WHO: Rangaswamy T., Chavan A., Dabholkar H., Dakshin Geneva the treatment gap confirms the need for L., Kumar P., John S., Thornicroft G., Patel V. The 10. Millennium Development Goals, United development of a lay health worker delivered assistance by both non-specialist providers Nations. “We the Peoples: The Role of the United collaborative community based intervention for and the active involvement of people Nations in the 21st Century” (2000) led to the UN people with schizophrenia in India. BMC health affected by mental disorders22. A pilot Millennium Declaration, Resolution 55/2 adopted services research. 12 (pp 42), 2012. by the General Assembly 8 September 2000. study of such an intervention with 256 11. The Schizophrenia Commission (2012) people with psychotic illnesses showed The abandoned illness: a report from the a significant reduction in the levels of Schizophrenia Commission London: Rethink disability for the whole group, the vast Mental Illness. majority of whom had engaged with the 12. Anthony W, Cohen M, Farkas M. (1990) 23 Psychiatric Rehabilitation. Boston: Center for programme . A further example of how Psychiatric Rehabilitation. such a service can be delivered by a lay 13. Liberman RP. (2008) Recovery From Disability: health worker (supervised by specialists) Manual of Psychiatric Rehabilitation. Washington in three rural areas in India consisted DC: American Psychiatric Publishing. of 5 components: psycho-education; 14. Frese III FJ, Knight EL, Saks E. Recovery adherence management; rehabilitation; from schizophrenia: with views of psychiatrists, psychologists, and others diagnosed with this referral to community agencies; and disorder. Schizophrenia Bulletin. 2009: 35(2): health promotion24. 370-380. 15. National Consensus Statement on Mental More holistic care for schizophrenia is Health Recovery definition (SAMHSA). http:// therefore likely to use different tools in mentalhealth.samhsa.gov/publications/allpubs/ different cultures, but all will contain sma05-4129. (accessed: 20.03.2012) individual care plans for those affected by the disorder, and personal contact with trained carers.

31 Acknowledgments: Dr Lucja Kolkiewicz MBBS, MRCPsych Associate Medical Director for Recovery We are grateful to all those people and Well-Being, East London NHS across the globe including service users, Foundation Trust, UK families, friends and professionals who E-mail: [email protected] continue to provide hope to people living with schizophrenia. Isolation, Dr Henk Parmentier MD stigma and lack of dignity continue to GP Clinical Lead Croydon Out of Hours be a challenge and we invite you all to of Virgin Care, Primary Care Lead of the join the World Federation of Mental South London and South East Hub of the Health so that we can continue to work MHRN (Mental Health Research Network, together to address the challenge. We are Trustee of PRIMHE (Primary Care Mental grateful to the London Borough of Tower Health & Education) Hamlets, East London NHS Foundation E-mail: [email protected] Trust and Waltham Forest Mental Health Commissioning Team, London Borough of Richard Fradgley BA, MA, MPA, DipSW. Waltham Forest and the Navigator Project Deputy Director of Mental Health and Team, London, UK for providing case Joint Commissioning NHS Tower Hamlets examples. Clinical Commissioning Group, London UK E-mail: Richard.Fradgley@towerhamletsccg. Professor Gabriel Ivbijaro MBE, MBBS, nhs.uk FRCGP, FWACPsych, MMedSci, MA President Elect WFMH (World Federation Dr Anwar Ali Khan BSc, MBBS, DRCOG, for Mental Health), Visiting Assistant DCH (Lond), DCCH (Edin), FRCGP Professor NOVA University Lisbon Portugal, Clinical Chair Waltham Forest CCG, Medical Director The Wood Street Medical Specialty Training Lead for GP North-East Centre London UK, Immediate Past Chair and Central London, Provost North- Wonca Working Party on Mental Health East London RCGP Faculty, GP Principal E-mail: [email protected] and Trainer - Churchill Medical Centre, Chingford, UK Professor Sir David Goldberg KBE, FKC, E-mail: [email protected] FMedSci, FRCP Professor Emeritus & Fellow, King’s College, London E-mail: [email protected] Professor Michelle Riba MD, MS, DFAPA, FAPM Professor and Associate Chair for Integrated Medical and Psychiatric Services Department of Psychiatry, University of Michigan, Past President American Psychiatric Association Email: [email protected]

32 SECTION V TIME TO ACT

LIVING A HEALTHY LIFE WITH themselves but also by people around between 45 and 55%12,14,17. People with SCHIZOPHRENIA: PAVING THE them and even by health systems. schizophrenia have demonstrated lower ROAD TO RECOVERY People with severe mental disorders, levels of physical activity and physical fitness than the general population, M.T. Yasamy, A. Cross, E. McDaniell, S. Saxena including schizophrenia, experience disproportionately higher rates of which may be due to the limited ability mortality6, 7, often due to physical to be physically active, being overweight Background illnesses such as cardiovascular diseases, or obese, higher smoking rates and side 18 metabolic diseases, and respiratory effects from anti-psychotic medication . People with schizophrenia can recover1,2. diseases8. The mortality gap results in The service users, their families, Impact of health and treatment a 10-25 year life expectancy reduction communities and the health and social systems in these patients4,5,9-11. For people with care providers need to recognize such Institutionalization commonly robs service schizophrenia, mortality rates are 2 to 2.5 a possibility and maintain realistic hope users of the space and the autonomy times higher than the general population 1, 3 required for being mobile and physically during treatment . However, for most of (9, 12). the affected population in the real world, active. Many institutions lack structured, especially those with poor psychosocial Physical health conditions balanced or individualised dietary support, this would be a lengthy and There is evidence to suggest that people regimes and people may gain weight strenuous journey. One extreme for with schizophrenia have higher prevalence and even become obese. Furthermore, people living with schizophrenia is rates of cardiovascular problems and many antipsychotic medicines increase immediate and complete recovery; the obstetric complications (in women). appetite, and if not monitored regularly, other is enduring disability. The gray zone There is also good evidence that they may directly or indirectly contribute to in between embraces the majority of are more likely to become overweight, substantial metabolic changes, which affected people. develop diabetes, hyperlipidaemia, can lead to diabetes, hyperlipidaemia and hypertension19. Estimated prevalence We briefly review the different dental problems, impaired lung function, rates for diabetes and hypertension in requirements for a better outcome among osteoporosis, altered pain sensitivity, patients with schizophrenia are between people with schizophrenia, as well as sexual dysfunction and polydipsia or be 10 and 15% and between 19 and 58% how certain changes and interventions affected by some infectious diseases respectively14. can contribute to the healthy life that such as HIV, hepatitis and tuberculosis as is attainable for people living with compared with the general population13. The elevated physical health risks schizophrenia. A “healthy life” here Different factors contribute to premature associated with schizophrenia and refers to the WHO definition of health death. Fig. 1 summarises the association other severe mental illnesses indicate which comprises physical, mental and of different proposed factors contributing a stronger need for close and regular social health. Respecting the human to premature death among people with health monitoring. Paradoxically, people rights of people with schizophrenia is an schizophrenia and other severe mental with severe mental illness receive less overarching principle that needs to be disorders. medical care for their physical problems as recognized across all these interrelated compared with others20. Unhealthy life style and factors of risk aspects of health. Heavy smoking is about 2-6 times Being in good physical health is a crucial more prevalent among people with aspect for quality of life; however, it is known that people living with Physical Health schizophrenia as compared with the general population, with prevalence schizophrenia and other severe mental Premature mortality rates between 50 and 80%14. Even as illnesses have a higher prevalence of physical diseases compared to An important phenomenon observed compared with people with other severe the general population21. Promoting among people with schizophrenia and mental illnesses, being a current smoker collaboration between mental and other severe mental disorders is poor is 2-3 times more common among people physical health is vital for improving care physical health and premature death. with schizophrenia15. Particularly high of people with severe mental illness. Such physical health disparities have rates of smoking are observed among The diagnosis of physical conditions is rightfully been stated as contravening patients hospitalised for psychiatric commonly overshadowed by a psychiatric international conventions for the ‘right to treatment16. diagnosis and delayed diagnosis makes health’4, 5. The physical health of people Patients with schizophrenia are often interventions less effective or even with severe mental illness is commonly at greater risk for being overweight or impossible22. ignored not only by the service users obese, with estimated prevalence rates 33 Mental and Social Health Problems higher rates of victimization alike24. People Discussion A common but harmful mistake is to with severe mental illnesses, including The severity of disability in general identify people with schizophrenia simply schizophrenia are also more likely to reflects the interaction between features as a clinical diagnosis. The inappropriate be homeless, unemployed, or living in of a person and features of the society. term “schizophrenic” is commonly used poverty25,26. Disability and morbidity experienced by the public and even by some care by people living with schizophrenia are givers to refer to a person who is living not purely caused by brain pathology. with schizophrenia. This term eclipses the Interventions Similarly, poor physical health and human and social nature of that individual, In many countries efforts have begun premature death are consequences and renders them as purely a diagnosis. to better improve the physical health of interactions between people with People living with schizophrenia experience of people with schizophrenia, whilst schizophrenia and a society socially discrimination and violations of their rights simultaneously encouraging the social and functionally biased towards the both inside and outside institutions. In and education sector to provide better population living with severe mental everyday life they face major problems access to service for people with severe disorder. People with schizophrenia die in the areas of education, employment, mental illness. Treatments should earlier not because schizophrenia per and access to housing. As previously not be limited to pharmacotherapy. se is fatal but rather because of the mentioned, even access to health services Non-pharmacological psychosocial discrimination and lack of access to good is more challenging. interventions are gaining an increasing health services, regular monitoring for People living with a severe mental importance and should be considered an other risk factors for health and physical disorder are also likely to suffer from other adjunctive component of mental disorder diseases, and poor family and social mental disorders such as depression and management. Psychosocial interventions support. A disempowered person with substance abuse. Lifetime prevalence are also effective at preventing some schizophrenia becomes incapable of self- of suicide among those living with a of the side effects of antipsychotic care as well. severe mental disorder is around 5% medications. A meta-analysis has shown which is much higher than that in the the enduring effects of a range of non- general population23, 24. Higher prevalence pharmacological interventions at reducing of substance use among people with antipsychotic-induced weight gain, schizophrenia along with some other namely individual or group interventions, factors contributes to the higher reported cognitive–behavioural therapy and violent activity among them and to their nutritional counselling27.

Fig. 1. Proposed associations of different factors leading to premature death among people with severe mental illness.

34 We are sharing two examples of services that integrate different aspects of Many of WHO’s ongoing programmes health and are summarized in boxes 1 and 2. also contribute to paving the way towards recovery of people with severe mental Box 1. The example of Fountain House28 disorders including schizophrenia. 33 Fountain House, based in the US but with a global reach, has already developed an WHO’s Mental Health Action Plan , initiative which is community based, recovery oriented and at the same time very endorsed by the World Health Assembly sensitive about the general well-being and physical health of the service users. in 2013 envisions and plans for all different aspects of services required Their reports point to a high level of success and satisfaction of the service users to provide a healthy life for people and to “reversing the trend” in this regard and “Bringing hope to mind”. The living with mental disorders including programmes are comprehensive. They include wellness, education, employment schizophrenia. The global plan emphasizes and housing. Their meticulous concern about the physical health of the service that persons with mental disorders users is reflected across many of their reports of activities and achievements. The should be able to access, without the risk “Health Home” of their Sidney Baer Centre is a good example of responding to of impoverishing themselves, essential this commonly ignored need. health and social services that enable them to achieve recovery and the highest attainable standard of health. WHO

29, 30 promotes global actions using guidelines Box 2. The chain free initiative in Mogadishu that are not only based on evidence but The “chain free initiative” in Somalia is an example of scaling up a community also observe the human rights of service oriented service model in a poor resource country. WHO/EMRO started this users, which is why obtaining recovery has low cost programme in Mogadishu and then expanded to similar contexts. been observed as one of the favourable The programme includes three phases: Phase 1. (Chain-free hospitals) includes outcomes of access to services.33 removing the chains, and reforming the hospital into a patient friendly and The Mental Health Gap Action humane place with minimum restraints. Phase 2. (Chain-free homes) organizing Programme of WHO 34 and its mobile teams and home visits, removing the chains, providing family psycho- Intervention Guide 35 are examples of education, and training family members on a realistic, recovery-oriented approach. WHO’s new approach in emphasizing Phase 3. (Chain-free environments) removing the “invisible chains” of stigma psychosocial interventions in addition to and restrictions affecting the human rights of persons with mental illness, and pharmacotherapy and in terms of a better respecting the right to universal access to all opportunities with and for persons focus on the health of service users in with mental illness, empowering and supporting the service users and ex-service its totality. The revision of mhGAP-IG is users by mobilizing communities to provide them with job opportunities and underway and the updated version will be shelter. The programme, which followed a results-based management approach, published in 2015. The updated version improved the situation in the psychiatric ward, and increased the number of will provide us with guidelines that can those receiving services through home visits and outpatient visits. More and more further assure that harm is reduced to ex-patients are now living and working in a community that is now more aware its minimum and benefits are maximized about the right of people with severe mental illness. The teams at the same time in terms of a holistic approach to service started to improve the service users’ nutrition and provided them with treatment of users’ health. physical conditions including TB. The Quality Rights Project of WHO and its checklist provides a good opportunity for monitoring the quality of services The Way Forward countries (LAMICs) is very limited. In a for people with mental illness including 2007 review, 86% of such studies came schizophrenia36. For decades, we have been rightfully from industrialized countries32. In high advocating for “no health without mental income countries health literacy is higher, There are a range of actions that could be health”. This has been a popular slogan better quality services are available and taken by different stakeholders; examples and is still valid. However, as coverage there is overall better monitoring of the are summarized here: of mental health services has escalated, institutions and a greater frequency of People with schizophrenia: Exercising we have become more concerned about regular check-ups for physical health of self-care and demanding their rights, poor quality services worldwide. The people with mental illness. The situation including the right to comprehensive time has arrived to call for “no mental is expected to be much worse in low health care. Participation in decision- health without physical health” as well31. and middle income countries where the making and implementation of Realizing this wish requires serious efforts resources are poor, the institutions are programmes on mental health. from all stakeholders. poorly managed and access to sound Families: Supporting and empowering Our knowledge of mortality among mental health care and physical care is the family members of people with people with severe mental illness and limited. WHO has started fresh evidence schizophrenia its correlates in low and middle income reviews and is sharing information on these important issues.

35 Communities and civil societies: 4.Thornicroft G. Physical health disparities and 19.Cerimele JM, Katon WJ. Associations Empowering the people with mental illness: the scandal of premature mortality. between health risk behaviors and symptoms of The British journal of psychiatry : the journal of schizophrenia and bipolar disorder: a systematic schizophrenia, removing stigma and mental science. 2011;199(6):441-2. review. Gen Hosp Psychiat. 2013;35(1):16-22. discrimination, respecting their rights, 5.Thornicroft G. Premature death among people 20.Mitchell AJ, Lord O. Do deficits in cardiac care facilitating inclusion in economic and with mental illness. BMJ. 2013;346. influence high mortality rates in schizophrenia? social activities, as well as including 6.Cuijpers P, Smit F. Excess mortality in depression: A systematic review and pooled analysis. J Psychopharmacol. 2010;24(4 Suppl):69-80. socially and culturally appropriate a meta-analysis of community studies. Journal of affective disorders. 2002;72(3):227-36. 21.Maj M. Physical health care in persons with supported employment. Meeting the 7.De Hert M, Correll CU, Bobes J, Cetkovich- severe mental illness: a public health and ethical families’ physical, social and mental Bakmas M, Cohen D, Asai I, et al. Physical illness priority. World Psychiatry. 2009;8(1):1-2. health needs. Working with local agencies in patients with severe mental disorders. I. 22.Organization WH. Greater needs, limited to explore employment or educational Prevalence, impact of medications and disparities access. B World Health Organ [Internet]. 2009; in health care. World Psychiatry. 2011;10(1):52- 87(4). Available from: http://www.who.int/ opportunities, based on the person’s 77. bulletin/volumes/87/4/09-030409/en/. Accessed needs and skill level. 8.Lawrence D, Hancock KJ, Kisely S. The gap in 16.07.2014. life expectancy from preventable physical illness 23.Hor K, Taylor M. Suicide and schizophrenia: Health sector: Taking certain measures in psychiatric patients in Western Australia: a systematic review of rates and risk factors. J such as downsizing and ultimately retrospective analysis of population based Psychopharmacol. 2010;24(4 Suppl):81-90. terminating institutionalization. registers. BMJ. 2013;346:f2539. 24.Fazel S, Gulati G, Linsell L, Geddes JR, Grann Also providing high quality physical 9.Saha S, Chant D, McGrath J. A systematic M. Schizophrenia and violence: systematic services and regular monitoring for risk review of mortality in schizophrenia - Is the review and meta-analysis. PLoS medicine. differential mortality gap worsening over time? 2009;6(8):e1000120. factors and side effects of treatments, Arch Gen Psychiat. 2007;64(10):1123-31. 25.Maniglio R. Severe mental illness and tackling unhealthy life styles, as well as 10.Svendsen D, Patricia Singer, Mary Ellen Foti, criminal victimization: a systematic review. Acta identifying and treating common chronic and B. Mauer. Morbidity and mortality in people psychiatrica Scandinavica. 2009;119(3):180-91. physical conditions among people with with serious mental illness. Alexandria, VA, USA: 26.Eriksson A, Romelsjo A, Stenbacka M, National Association of State Mental Health schizophrenia. Adoption of smoking Tengstrom A. Early risk factors for criminal Program Directors (NASMHPD) Medical Directors offending in schizophrenia: a 35-year cessation strategies for and with service Council, 2006. longitudinal cohort study. Soc Psych Psych Epid. users and promoting smoke free service 11.Larsen JI, Andersen UA, Becker T, Bickel GG, 2011;46(9):925-32. environments. Coordinating with the Borks B, Cordes J, et al. Cultural diversity in 27.Alvarez-Jimenez M, Hetrick SE, Gonzalez- physical diseases among patients with mental service users as well as social, education, Blanch C, Gleeson JF, McGorry PD. Non- illnesses. Aust Nz J Psychiat. 2013;47(3):250-8. pharmacological management of antipsychotic- housing, employment and other sectors. 12.De Hert M, Dekker JM, Wood D, Kahl KG, induced weight gain: systematic review and Holt RI, Moller HJ. Cardiovascular disease meta-analysis of randomised controlled trials. The Social sector: Empowering and and diabetes in people with severe mental British journal of psychiatry : the journal of mental supporting people with schizophrenia illness position statement from the European science. 2008;193(2):101-7. to obtain education, employment and Psychiatric Association (EPA), supported by the 28.Wellness. Fountain House; Available from European Association for the Study of Diabetes housing as well as coordinating with http://www.fountainhouse.org/content/wellness. (EASD) and the European Society of Cardiology Accessed 16.07.2014. health and other sectors. (ESC). European psychiatry : the journal of the Association of European Psychiatrists. 29.Organization WH. Mental health unlocking 2009;24(6):412-24. the asylum doors. Bugs, drugs and smoke: stories from public health: World Health Organization; Acknowledgment: 13.Scott D, Happell B. The high prevalence of 2011. p. 18. poor physical health and unhealthy lifestyle 30.Organization WH. Chain Free Initiatives. We wish to acknowledge Dr G. Thornicroft behaviours in individuals with severe mental illness. Issues in mental health nursing. Available from http://www.emro.who.int/mental- and Dr J. Eaton for their technical feedback 2011;32(9):589-97. health/chain-free-initiative/. Accessed 16.07.2014. on an information sheet that provided the 14.Correll CU. Acute and long-term adverse 31.No mental health without physical health. starting point for this paper. effects of antipsychotics. CNS spectrums. Lancet. 2011;377(9766):611-. 2007;12(12 Suppl 21):10-4. 32.Leucht S, Burkard T, Henderson J, Maj M, MTY and SS are WHO employees, they 15.de Leon J, Diaz FJ. A meta-analysis of Sartorius N. Physical illness and schizophrenia: are responsible for the views expressed in worldwide studies demonstrates an association a review of the literature. Acta psychiatrica Scandinavica. 2007;116(5):317-33.33. this publication, which do not necessarily between schizophrenia and tobacco smoking behaviors. Schizophr Res. 2005;76(2-3):135-57. Organization WH. Mental health action plan 2013 represent the decisions, policy, or views of - 2020. Geneva, Switzerland2013. 16.Stockings EA, Bowman JA, Prochaska JJ, Baker the World Health Organization. AL, Clancy R, Knight J, et al. The impact of a 34.Organization WH. mhGAP Mental Health Gap smoke-free psychiatric hospitalization on patient Action Programme Scaling up care for mental, smoking outcomes: a systematic review. The neurological, and substance use disorders: WHO; 2008. References: Australian and New Zealand journal of psychiatry. 2014;48(7):617-33. 35.Organization WH. mhGAP Intervention Guide 1.Bellack AS. Scientific and consumer models 17.Shin JK, Barron CT, Chiu YL, Jang SH, Touhid for mental, neurological and substance use of recovery in schizophrenia: Concordance, S, Bang H. Weight changes and characteristics disorders in non-specialized health settings: World contrasts, and implications. Schizophrenia of patients associated with weight gain during Health Organization; 2010. bulletin. 2006;32(3):432-42. inpatient psychiatric treatment. Issues in mental 36.Organization WH. WHO QualityRights tool kit 2. Sklar M, Groessl EJ, O’Connell M, Davidson L, health nursing. 2012;33(8):505-12. to assess and improve quality and human rights Aarons GA. Instruments for measuring mental 18.Vancampfort D, Probst M, Scheewe T, De in mental health and social care facilities: World health recovery: a systematic review. Clinical Herdt A, Sweers K, Knapen J, et al. Relationships Health Organization; 2012. 338 p. psychology review. 2013;33(8):1082-95. between physical fitness, physical activity, smoking 3.RAISE Project Overview. National Institute of and metabolic and mental health parameters World Health Organization Mental Health; Available from: http://www.nimh. in people with schizophrenia. Psychiat Res. nih.gov/health/topics/schizophrenia/raise/index. 2013;207(1-2):25-32. Department of Mental Health and Substance Abuse shtml.Accessed 16.07.2014. [email protected]

36 LIVING BEYOND all over the world. Harding and her References SCHIZOPHRENIA— colleagues reviewed a number of these 1. American Psychiatric Association. (1987). RECOVERY IS POSSIBLE long term research studies and reported Diagnostic and statistical manual of mental that a deteriorating course for severe disorders (3rd ed.). Washington, DC. William A. Anthony, PhD mental illnesses, including schizophrenia, 2. Anthony, W. A. (1993). Recovery from mental was not the norm (Harding, 1994; 2003). illness: The guiding vision of the mental health In the twentieth century the traditional service system in the 1990s. Psychosocial dogma of the field of mental health was As a result of these two developments Rehabilitation Journal, 16(4), 11-23. that a diagnosis of schizophrenia led to there is now both anecdotal and empirical 3. Anthony, W. A. & Ashcraft, L. (2010) The a lifetime of deterioration. In essence, support for the fact that there can be recovery movement. In B. L. Levin, K. H. Hennessy healing and growth after a person has & J Petrila (Eds.) Mental Health Services: A Public schizophrenia was seen as a life sentence Health Perspective (pp. 465-479). Oxford: Oxford of mental health decline. The myth was been diagnosed with schizophrenia. University Press. that most people with schizophrenia were People with schizophrenia are no longer 4. Deegan, P. E. (1988). Recovery: The lived “deteriorating with schizophrenia”, in defined by their schizophrenia diagnosis experience of rehabilitation. Psychosocial Rehabilitation Journal, 11(4), 11-19. contrast to the current fact that many and symptoms, but rather by their long term success and satisfaction in numerous 5. Harding, C. M. (1994). An examination of the people with schizophrenia can recover— complexities in the measurement of recovery and are “living beyond schizophrenia”. living, learning, working and socializing in severe psychiatric disorders. In R. J. Ancill, D. While there are many definitions of roles. People with schizophrenia can Holliday & G. W. MacEwan (Eds.), Schizophrenia: experience a meaningful life after Exporing the spectrum of psychosis (pp. 153-169). recovery from schizophrenia, an early, Chichester: J. Wiley & Sons. diagnosis, not a deteriorating life. succinct definition of recovery was, 6. Harding, C. M. (2003). Changes in “the development of new meaning Based on this new understanding of schizophrenia across time: Paradoxes, patterns, and purpose in one’s life as one grows and predictors. In C. Cohen (Ed.), Schizophrenia recovery, now in the twenty first century into later life (pp. 19-41). Washington, DC: APA beyond the catastrophe of schizophrenia” we find a revolution brewing in the field Press. (Anthony, 1993). While diagnosticians of of mental health. It is a revolution in 7. Jacobson, N. (2001). Experiencing recovery: the 20th century believed that the most vision—in what is believed possible for A dimensional analysis of consumers’ recovery common outcome of schizophrenia was narratives. Psychiatric Rehabilitation Journal, people diagnosed with schizophrenia. 24(3), 248-256. “acute exacerbations with increasing In the previous century it was thought deterioration between episodes” 8. Jenkins, J. H., Strauss, M. E., Carpenter, that people living with schizophrenia E. A., Miller, D., Floersch, J., & Sajatovic, M. (American Psychiatric Association, must endure a lengthy duration of severe (2007). Subjective experience of recovery from 1987), the more recent quantitative and disability, with a deteriorating course schizophrenia-related disorders and atypical qualitative research findings suggest antipsychotics. International Journal of Social over their lifetime. New empirical and Psychiatry, 51, 211-227. otherwise (Anthony & Ashcraft, 2010). anecdotal evidence indicates that this 9. Leete, E. (1989). How I perceive and manage Two important developments occurred belief was erroneous. We are increasingly my illness. Schizophrenia Bulletin, 15(2), 197-200. late in the twentieth century that have convinced by this current anecdotal 10. Mead, S., & Copeland, M. E. (2000). What and empirical data that recovery from recovery means to us: Consumers’ perspectives. led to the understanding that recovery Community Mental Health Journal, 36(3), 315- was possible. One factor was the writing schizophrenia is possible for many more 328. of people with psychiatric diagnoses, people than was previously believed. 11. Spaniol, L., Gagne, C., & Koehler, M. (2003). including schizophrenia. Beginning in the Furthermore, it appears that much of The recovery framework in rehabilitation and what we thought was the chronicity of mental health. In D. Moxley & J. R. Finch (Eds.), 1980s first person accounts of people’s Sourcebook of Rehabilitation and Mental Health recovery from severe mental illnesses schizophrenia was due to the way society Practice (pp. 37-50): Kluwer Academic/Plenum began to appear regularly in the literature and the mental health system treated Publishers. (e. g., Deegan, 1988; Leete, 1989; Mead people with schizophrenia, and not the & Copeland, 2000). Also qualitative illness itself. Where once there was little William A. Anthony, Ph. D studies of people’s recovery experiences hope for much more than a deteriorating, Professor Emeritus became commonplace (e. g., Jacobson, long term disability for people diagnosed Boston University 2001; Jenkins et al., 2007; Spaniol et. al, with schizophrenia, there is now a 2003). research based hope for a meaningful life beyond schizophrenia. A vision of the The second development supporting possibilities of recovery changes how we the factual basis of recovery from treat people with schizophrenia. schizophrenia was the long term, followup studies of people with schizophrenia that were being conducted

37 LIVING WITH SCHIZOPHRENIA - A major barrier to achieving recovery is To make positive change we require a CALL TO ACTION social attitude and the stigma associated focus on good quality research, so that we with mental illness and schizophrenia. can adopt truly evidence based practice. Living with schizophrenia is the theme We call on every citizen to rise above this We need effective medications with less of World Mental Health Day 2014, prejudice and be your neighbour’s keeper. side effects, access to psychological and because we want to bring hope to the Access to housing, education, leisure social therapy, smoking cessation, access 26 million people worldwide affected by activities, family life and companionship to exercise and all those things that schizophrenia, a number which doubles continues to be difficult for many people support healthy lifestyles and contribute when families and carers are included. with schizophrenia. We call on people to recovery in schizophrenia. Schizophrenia is an illness that typically who provide services to ensure that access World Mental health Day is the flagship starts in adolescence and may affect well- to all the things that everybody takes for event of WFMH, the oldest mental health being, making it harder for some people granted to live a good life are provided advocacy organisation in the world. It to reach their full potential. But, we know for people with schizophrenia, just like for provides a focus for each and every one that up to 50% of people affected by everybody else. of us to advocate for better mental health schizophrenia, if not more, will eventually Early diagnosis and access to good mental and to address the stigma that can limit have a good outcome if they receive the and physical health care is important and people’s development whether you are a appropriate help. Recovery is a journey collaboration between specialists, family member of WFMH or not. and recovery is possible. This is illustrated doctors, people with schizophrenia and World Mental Health Day is celebrated by the personal stories we have had the their families is an essential component of by many groups, large and small, all privilege of sharing in this year’s World delivering the best quality interventions. over the world on 10th October. These Mental Health Day material. Policy makers and politicians need to events bring mental health to everybody’s To ensure that individuals achieve recovery stand up and be counted, so that they consciousness and bind us together. we call for the global health community, produce appropriate policies and laws Let’s share our activities. Send your governments, donors, multilateral to ensure parity of physical and mental photographs, event programmes and agencies, and other mental health health care. summaries of what you have achieved to stakeholders, such as professional bodies Spirituality can play an important role in [email protected] so we can celebrate and consumer groups, to do all that they helping people maintain good mental one another’s efforts, learn from each can to support people experiencing the health and live with or recover from other and support one another. symptoms of schizophrenia and their mental health problems and this should be families, especially as the protection and supported. NGO’s play a role and should treatment of people with schizophrenia actively seek out those people is recognised by the United Nations as a with schizophrenia in the community fundamental human right. to actively support them and enable the building of networks and social connections with others.

38 SECTION VI WORLD OF THANKS

As we celebrate the 2014 World Bhugra, Nikos Christodoulou, John The WMHDAY campaign has sought Mental Heath Day campaign, we also Bowis, Juan Mezzich, Patrick McGorry, individual donations and we would like to celebrate the incredible people living Todd Edwards, Philippa Garety, Julian thank those that have given to the 2014 with Schizophrenia. We have to stop and Leff, Mohammed Abou-Saleh, Helen Campaign: reflect on the pain, struggles and strength Millar, Janet Paleo, Gabriel Ivbijaro, Sir Larry Cimino these people experience with the illness David Goldberg, Henk Parmentier, Lucja and how they overcome its hold on them Kolkiewicz, Michelle Riba, R Fradgley, A George Christodoulou to reach a point in life where they feel Khan, William Anthony and the staff at L. Patt Franciosi happy and comfortable in their own skin. Hill and Knowlton Strategies, UK. Gabriel Ivbijaro and Lucja Kolkiewicz We thank all of those people who have Also, we would like to thank those that Deborah Wan spoken up about their experience of living continue to manage and coordinate this with schizophrenia and hope that this will project– Dr L Patt Franciosi, Dr Gabriel encourage others to speak out and stand Ivbijaro, Elena Berger and Deborah up and find their own recovery. AND finally, the WFMH would like to Maguire. thank our sponsors for the educational Schizophrenia is an illness that has Along with the writers, we would like to grants that made this program possible: followed mankind throughout history acknowledge the professional formatting yet still today it is so misunderstood and design from C/Change, Inc. Hugh and treatment has only just begun to Schulze and his team have continued to be person-centered and with an aim of inspire and support the WFMH in many recovery. The 2014 campaign will give ways and we acknowledge their ongoing you information on what schizophrenia role in our new look, new website and is, how early intervention and holistic care now with our 2014 WMHDAY material. affect how people live with schizophrenia, the role of prevention and promotion, We have been able to provide a few social inclusion and many personal stories translations this year. Due to generous to help you understand how people deal in-kind donations we have the following with the diagnosis and how they have languages (at print time) and would like reached recovery. to thank the following – Each year as we begin production of ARABIC - His Excellency, Dr Abdulhameed the material, we find ourselves working Al-Habeeb Director General of Mental with such amazing professionals that Health, Saudi Ministry of Health and Dr. are willing and able to contribute to Abdullah Al-Khathami the campaign - therefore we would like HINDI - Dr. M.L. Agrawal, Dr. Aruna to extend a very genuine thank you to Agrawal, Directors of Agrawal Neuro all those writers involved in this year’s Psychiatry, India material – Jeffrey Geller, Janet Meagher, RUSSIAN - AstraZeneca Russia Bill MacPhee, David Crepaz-Keay, Dinesh CHINESE - New Life Psychiatric Rehabilitation Association, Hong Kong

39 World Federation for Mental Health PO BOX 807 Occoquan, VA 22125 USA www.wfmh.org

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