This book is the first ethnography of the little-known world of clozapine clinics in Australia and the United Kingdom. Anthropologist Julia Brown engages with the narratives of people living in extreme health circumstances to challenge some of the assumptions made about clozapine treatment and to explore what it means to be diagnosed with ‘treatment-resistant schizophrenia.’
Clozapine is a gold standard but controversial treatment for psychosis that requires lifelong monitoring to reduce fatality caused by clozapine side effects. Focusing on the social world of the clozapine clinic and based on the author’s own extensive research, this book explores what it means to live with the interpersonal challenges of psychosis and trauma, the risks of multi-morbidity, and how clozapine clients can experience meaningful control over their health. Brown uses her findings to point to the practical clinical implications of clozapine clients being given more recognition and accountability, and to explore how health agency relates to moral agency.
The Clozapine Clinic particularly highlights the importance of investing in continuity of healthcare and is an essential read for caregivers who work with sufferers of psychosis as well as academics and policymakers focused on mental health.
Table of Contents
Foreword; Preface; Introduction; Part 1: Health Agency 1. A universal experience? 2. A framework for understanding health agency; Part 1 conclusion; Part 2: Blood work; 3. Clinic circuitries 4. Anxiety reconstituted 5. Flexible care 6. "The brain can't live alone" 7. Coagulation and flow 8. Social contact at a negotiable distance 9. Moral agency; Part 2 conclusion; Part 3: Embracing uncertainty; 10. A therapeutic dose 11. Mind-body-other 12. Complementary consumptions 13. Attending to the body and interpreting symptoms 14. Health system failures: "Morecould be done" 15. "Everyone's different" Part 3 conclusion; Part 4: Finding rhythm; freeing oneself; 16. Clozapine frames 17. Doing things; finding focus - alone and together 18. Wanting more: Security; order; and "the knock-on effect" 19. Pursuing mindfulness 20. Experiencing 'flow' and evading clinical concerns Part 4 conclusion; Conclusive reflections; Acknowledgements; Appendix I: Participant portraits; Apendix II: Table of clozapine client demographics; References
Julia Brown, PhD, is an interdisciplinary anthropologist who investigates the lived experiences and ethical challenges of controversial biomedical treatments. She attends to issues of social inclusion and uncertainty in medicine, and the complexities of concepts such as health and quality of life.
'Julia Brown’s investigation of The Clozapine Clinic is an absolute tour de force. Through mixed methods and meticulous analyses, Dr. Brown demonstrates the importance of health agency as both personal and social relational matters that are vital to maintain wellbeing. Excellent for upper division and graduate/professional students, and essential reading for social and health sciences, including psychologists, medical/psychological anthropologists, social workers, psychiatrists, and allied fields.'
Janis H. Jenkins, University of California, San Diego, author of Extraordinary Conditions: Culture and Experience in Mental Illness; Troubled in the Land of Enchantment: Adolescent Experience of Psychiatric Treatment.
'The Clozapine Clinic is a subtle, surprising book about living with psychosis. Its ostensible subject is the experience of taking a medication which can be quite helpful for people—but also kill them unexpectedly. Its deeper topic is what helps someone with psychosis to live a morally fulfilling life. Brown’s answer is that people need relationships which are not about their psychosis, and which treat them as people with moral agency. Paradoxically, those relationships are easier to have inside the clinic, which focuses so directly on their physical health, than with their families. This is a wise and thought-provoking read.'
Tanya M. Luhrmann, Stanford University, author of Of Two Minds and co-editor of Our Most Troubling Madness.
'A rare critical ethnography that also focuses on the empowering and hopeful aspects of clozapine therapy for people with "treatment-resistant schizophrenia." Brown looks compassionately, but unflinchingly, at the disconcerting possibilities and stories of interpersonal violence and suicide to offer insights into how clozapine treatment might serve to mitigate this likelihood. This must-read book explores the continuity of social relationships clozapine monitoring offers that can counteract loneliness, and how patients sought out wellness on their own terms, with mundane strategies of everyday life part of the fundamental effort to survive and thrive.'
Neely A. L. Myers, Southern Methodist University, author of Recovery’s Edge: An Ethnography of Mental Health and Moral Agency
'Building on a careful anthropological analysis of how clozapine clinics really work, in the UK and in Australia, this book offers fresh insight to service users and practitioners. Dr Julia Brown’s original research conveys a powerful, positive message about how regular clinical assessments, primarily focused on management of the risks of clozapine treatment, perhaps surprisingly also serve to reinforce a sense of personal agency in support of sustained recovery for people living with some of the most severe forms of mental illness.'
Edward Bullmore, University of Cambridge, and author of The Inflamed Mind
'The prospects of recovery from schizophrenia have been under-appreciated for decades. The early intervention movement demonstrates that recovery is possible through early diagnosis and sustained, comprehensive biopsychosocial interventions. The hope and the reversible tragedy pertain to the effective approaches that too few patients can access, largely due to clinician and health system failure. Clozapine is emblematic of this failure. This book gives voice to the lived experiences of people taking clozapine. Readers will come to understand why life expectancy on clozapine exceeds that of people with schizophrenia never prescribed clozapine.'
Patrick McGorry, AO, University of Melbourne
'It has been said that schizophrenia is the most frightening word in the English language. This book provides a rare and surprisingly intimate portrayal of people living with schizophrenia. Brown explores the role of clozapine treatment in helping people, demonstrating both the benefits and costs of medication use. It is surely one of public health’s greatest challenges to finally address the paucity of treatment and service options for people with mental illness, especially schizophrenia. Readers are prompted to think how this challenge might be addressed, and not just through medication.'
Sebastian Rosenberg, Australian National University
'Dear Pharmaceutical Peruser, having been diagnosed with schizophrenia and a long-term prescribed clozapine user, I appreciate this unique study as an invaluable insight into the broader effects of living with clozapine. My advice is to Read This Book!'
Alan, UK clozapine client and research participant