About the Book
To an outside observer, Psychogenic Non-Epileptic Seizures (PNES) look like epileptic seizures. The manifestations of PNES include collapses, impaired consciousness, and seizure-related injuries. However, unlike epileptic seizures, which are the result of abnormal electrical discharges in the brain, most PNES are an automatic psychological response to a trigger perceived as threatening.
Not least because the changes in the brain that underpin
PNES cannot be visualised easily with clinical tests (such as the EEG), there are many uncertainties and controversies surrounding the condition. Patients often provoke a mixture of emotions in
healthcare professionals. In the authors' previous book, In Our Words: Personal Accounts of Living with Non-Epileptic Seizures, over 100 individuals with PNES and their family wrote about their experiences with the condition. While some had positive care experiences, many were left feeling confused, angry, and abandoned by the clinicians they had encountered.
Non-Epileptic Seizures in Our Experience: Accounts of Health Care Professionals complements the
authors' previous book by presenting the perspectives of over 90 members of different healthcare professions from around the world. The anonymous publication format has enabled many not only to share success stories but
also to be open about difficulties and failures. This volume will be an invaluable resource for both highly experienced professionals as well as relative novice and those experiencing PNES. This book will challenge negative attitudes surrounding the condition, improve understanding between healthcare professionals and patients, and - ultimately - advance the quality of care provided for those with PNES.
Table of Contents:
List of Common Abbreviations Foreword by Asti Hustvedt Foreword by Peter Wolf Foreword by Gretha Cronje Preface Acknowledgements Professional Accounts Useful Contacts Index
About the Author :
Markus Reuber is a Neurologist whose clinical work and research focuses on seizure disorders. He is particularly interested in the differential diagnosis of epilepsy and the aetiology and treatment of psychogenic nonepileptic seizures (PNES) and has published over 200 articles on these and other neurological topics. Apart from helping to develop a clinical service for his own patients, as Chair of the Psychogenic Nonepileptic Seizure Task Force of the International
League Against Epilepsy, he has helped to advance the cause of individuals with PNES around the world. He is Editor-in-Chief of Seizure - European Journal of Epilepsy. Gregg H. Rawlings is currently a Trainee Clinical Psychologist at The University of Sheffield, UK. He has completed a BSc and MSc in Psychology, and more recently, a PhD in Clinical Neuroscience. His doctoral thesis involved exploring the subjective experience of living with epileptic or nonepileptic seizures. He was lead author of the first systematic review investigating healthcare professional's perceptions of PNES involving nearly 4000 professionals worldwide. Steven C. Schachter is Chief Academic Officer for the Consortia for Improving Medicine with Innovation & Technology (CIMIT) and a Professor of Neurology at Harvard Medical School. He is Past President of the American Epilepsy Society and serves on the Epilepsy Foundation of America Board of Directors. Dr. Schachter has published over 250 articles and chapters and edited or written 35 books. He is a member of the Administrative Committee of the IEEE Engineering in Medicine and Biology
Society (EMBS), the Clinical Editor for Journal of Translational Engineering in Health and Medicine and founding editor and editor-in-chief of the medical journals Epilepsy & Behavior and Epilepsy & Behavior
Case Reports.
Review :
"The writers do not try to relay a 'How to treat...' manual for this disorder or sugarcoat any of the realities of treating this population. Overall, each story is a thoughtful and honest account of their experience." -- Lindsay Morgan Higdon, MD, Thomas Jefferson University, Doody's Review Service
"Contributors to this book offer a collection of their experiences dealing with one of the most challenging populations in neuropsychiatric practice, individuals with PNES.
In Our Experience assembles personal vignettes, windows into the mind and heart of professionals who feel deeply for their patients. Many clinicians comment on the great reward of abiding with our patients. Feedback from neurologists, psychiatrists, psychologists, and social workers I have trained in treating patients with PNES has been, 'This is some of the hardest work I do in clinic, but seeing patients get better over time, walking with them in their struggles and pain, is some of the most
fulfilling work I do.' In this book, readers can see what touches and moves us as thoughtful and compassionate practitioners, as we care for patients with PNES."
--W. Curt LaFrance, Jr., MD, MPH, Professor of Neurology and Psychiatry, Brown University, Director of Neuropsychiatry and Behavioral Neurology, Rhode Island Hospital
"So rarely are we, as healthcare professionals, encouraged to express the true and innermost emotional reactions and thoughts our patients elicit in us. Especially when it comes to patients diagnosed with PNES, asking a clinician to share this, is potentially a loaded exercise since these patients tend to be challenging to diagnose and treat and have been known to frustrate and stump many healthcare professionals. Non-Epileptic Seizures in Our Experience is a
wonderful collection of personal accounts provided by professionals from across the globe who work with PNES and who boldly agreed to share with the readers their innermost, honest reflections. This
is a must-read for professionals who treat PNES and for patients and loved ones to glimpse at the humanity and complexity of those 'specialists' whom you deal with daily."
--Lorna Myers, PhD, Director of Psychogenic Nonepileptic Seizures Program, Northeast Regional Epilepsy Group, Author of Psychogenic Nonepileptic Seizures: A Guide
"This second book in a series devoted to Non-Epileptic Seizures explores, as the first, a common set of disorders from an angle rarely approached. It gives us the experiences, doubts, puzzlements, reflections on positive and negative thoughts and revelations of insight offered by those dealing with patients at a clinical level, from different settings. Like all confessions, the individual narratives allow us to contemplate our own wanderings through the
difficult challenges to our understanding and prejudices of what sometimes seem like insoluble problems. How to avoid the Cartesian cataract and slipping into a mind-body split is something all contributors
have in common and have to disentangle. None of us is too experienced to learn from others, and there is much here to discover."
--Michael Trimble, MD, MPhil, Emeritus Professor of Neuropsychiatry, University College London
