Overview
- Focuses on public policy, patient care, research and ethics of ALS/MND from an international perspective
- Includes chapters written by ALS/MND experts representing twenty-one countries
- Strong background chapter summarizes multidimensional aspects of ALS/MND including epidemiology, clinical care, research and future needs; also highlights inter-relationships between public policy, culture and ethical dimensions of care
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Table of contents (24 chapters)
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Front Matter
Keywords
- ALS/MND and Government Action
- Governmental agencies and ALS/MND
- ALS/MND Organizations
- ALS/MND advocacy groups
- ALS/MND Policy
- ALS/MND and the public sector
- ALS/MND and the private sector
- Media perceptions of ALS/MND
- ALS/MND institutional care
- Caregivers and ALS/MND
- Governmental Aid, ALS/MND and Caregivers
- Financial and ALS/MND
- Assistive technologies for ALS/MND
- Legislation for ALS/MND
- Genetic testing and ALS/MND
- ALS/MND palliative and hospice care
- Legal status on suicide/euthanasia
- Physician-assisted suicide
About this book
This book focuses on the public policy and political/ethical dimensions of ALS/MND across a wide selection of countries and argues for the need of a multidisciplinary and international approach. Policy issues addressed include adequacy of funding for research and care, payment policy and regulatory functions of public and private insurers, long-term services and caregiver support, public health and prevention efforts, access to genetic testing and assisted technologies, ensuring a competent and adequate workforce especially for hands-on caregivers, and the challenging issues of providing palliative and hospice care for ALS/MND patients, advance directives and assisted suicide that face policy makers in all political jurisdictions.
Reviews
“There are numerous examples where the translation of the understanding and treatment of a disease process into public policy has been a critical event. This impressively comprehensive review of the major issues confronting this uniformly fatal neurodegenerative disease from a broad range of national perspectives is such an event. It highlights the epidemiology, options for care, ethical and cultural dilemmas and the need for accurate registries and greater visibility from an extensive range of 21 countries encompassing all sociodemographic levels. Above all, it illustrates the inequities in the accessibility of quality neurological care existing globally and which forms a major target for redress by the World Federation of Neurology and the World Health Organisation.” (William M. Carroll MD, FRACP, FRCP(E), President, World Federation of Neurology)
“We need to better understand how countries around the world have approached this cruel and devastating disease, which also presents enormous public policy challenges. Sharing of knowledge across borders will help us defeat ALS/MND. This book is an important tool in that effort.” (Calaneet Balas, President & CEO, The ALS Association, Chair, International Alliance for ALS/MND)
“This is a unique book. ALS/MND is the same the world over but the way it is diagnosed and managed varies enormously from country to country, and from region to region. This variation depends on many factors - the national economy, cultural and religious factors, and governmental and private structures. Participants at international meetings on ALS/MND know that there are national differences in care but are generally not aware of specifics. The editors have done an excellent job of bringing together experts from 21 countries, who provide information on national specifics in a structured format. Anyone interested in ALS/MND - physician, patient, or healthcare policy director - should read this book and learn from it.” (Walter G. Bradley D.M., F.R.C.P., Professor and Chairman Emeritus, Department of Neurology, Miller School of Medicine, University of Miami, Miami, Florida, USA)
“The progressive, relentless nature of ALS/MND means that you need to get the care right first time. As we, hopefully, approach an era of new, bespoke and - above all - effective treatments, so the link between policy and practice will become even more crucial. This book is a unique and bold attempt, not only to compare and contrast the variation in policy across the world, but also to understand policy through the perspective of those with real-world experience of treating this devastating disease.” (Brian Dickie, PhD, Director of Research Development, Motor Neurone Disease Association, Northampton, UK)
“ALS/MND is a complex condition that has no respect for geographical boundaries. Whilst the manifestation of the condition itself is similar across the world, the policies used by governments and organisations to deal with it can, and do, vary. This excellent book pulls together some of these policies and looks at the variations and the reason behind them. There is much for those of us working within the MND community worldwide to digest and learn from it in our quest to improve the lives of those living with the condition and ultimately to have a world free of ALS/MND.” (Craig Stockton, Vice Chair of International Alliance of ALS/MND Associations, Chief Executive of MND Scotland)
“We need to better understand how countries around the world have approached this cruel and devastating disease, which also presents enormous public policy challenges. Sharing of knowledge across borders will help us defeat ALS/MND. This book is an important tool in that effort.” (Calaneet Balas, President & CEO, The ALS Association, Chair, International Alliance for ALS/MND)
“This is a unique book. ALS/MND is the same the world over but the way it is diagnosed and managed varies enormously from country to country, and from region to region. This variation depends on many factors - the national economy, cultural and religious factors, and governmental and private structures. Participants at international meetings on ALS/MND know that there are national differences in care but are generally not aware of specifics. The editors have done an excellent job of bringing together experts from 21 countries, who provide information on national specifics in a structured format. Anyone interested in ALS/MND - physician, patient, or healthcare policy director - should read this book and learn from it.” (Walter G. Bradley D.M., F.R.C.P., Professor and Chairman Emeritus, Department of Neurology, Miller School of Medicine, University of Miami, Miami, Florida, USA)
“The progressive, relentless nature of ALS/MND means that you need to get the care right first time. As we, hopefully, approach an era of new, bespoke and - above all - effective treatments, so the link between policy and practice will become even more crucial. This book is a unique and bold attempt, not only to compare and contrast the variation in policy across the world, but also to understand policy through the perspective of those with real-world experience of treating this devastating disease.” (Brian Dickie, PhD, Director of Research Development, Motor Neurone Disease Association, Northampton, UK)
“ALS/MND is a complex condition that has no respect for geographical boundaries. Whilst the manifestation of the condition itself is similar across the world, the policies used by governments and organisations to deal with it can, and do, vary. This excellent book pulls together some of these policies and looks at the variations and the reason behind them. There is much for those of us working within the MND community worldwide to digest and learn from it in our quest to improve the lives of those living with the condition and ultimately to have a world free of ALS/MND.” (Craig Stockton, Vice Chair of International Alliance of ALS/MND Associations, Chief Executive of MND Scotland)
Editors and Affiliations
About the editors
Robert H. Blank, PhD, (University of Maryland) is an adjunct Professor of Political Science at the University of Canterbury in Christchurch, New Zealand. He has been a frequent guest professor at Aarhus University in Denmark and at National Taiwan University in Taipei, Taiwan, and a Research Scholar at New College Florida.
Jerome E. Kurent received his MD from the University of Cincinnati College of Medicine and completed residencies in Neurology and Internal Medicine at the Johns Hopkins Hospital. He completed fellowships in neuromuscular diseases and electromyography at the National Institutes of Health, followed by a Geriatrics Medicine fellowship at Harvard where he also received his MPH. Dr. Kurent joined the Medical University of South Carolina faculty in 1984, and is Professor of Neurology, Medicine and Psychiatry and Behavioral Sciences.
David Oliver, MD., recently retired as Consultant Physician in Palliative Medicine at the Wisdom Hospice in Rochester, Kent where he developed an integrated service over 32 years. He is an Honorary Professor at the Tizard Centre at the University of Kent, where he supervises students and is involved in research.
Jerome E. Kurent received his MD from the University of Cincinnati College of Medicine and completed residencies in Neurology and Internal Medicine at the Johns Hopkins Hospital. He completed fellowships in neuromuscular diseases and electromyography at the National Institutes of Health, followed by a Geriatrics Medicine fellowship at Harvard where he also received his MPH. Dr. Kurent joined the Medical University of South Carolina faculty in 1984, and is Professor of Neurology, Medicine and Psychiatry and Behavioral Sciences.
David Oliver, MD., recently retired as Consultant Physician in Palliative Medicine at the Wisdom Hospice in Rochester, Kent where he developed an integrated service over 32 years. He is an Honorary Professor at the Tizard Centre at the University of Kent, where he supervises students and is involved in research.
Bibliographic Information
Book Title: Public Policy in ALS/MND Care
Book Subtitle: An International Perspective
Editors: Robert H. Blank, Jerome E. Kurent, David Oliver
DOI: https://doi.org/10.1007/978-981-15-5840-5
Publisher: Palgrave Macmillan Singapore
eBook Packages: Political Science and International Studies, Political Science and International Studies (R0)
Copyright Information: The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021
Hardcover ISBN: 978-981-15-5839-9Published: 28 November 2020
Softcover ISBN: 978-981-15-5842-9Published: 29 November 2021
eBook ISBN: 978-981-15-5840-5Published: 27 November 2020
Edition Number: 1
Number of Pages: XXXI, 347
Number of Illustrations: 5 b/w illustrations
Topics: Public Policy, Health Policy, Health Services Research, Health Administration