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, Miller School of Medicine, University of Miami, USA "This book 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 AM, MBBS, MD, FRACP, FRCP(E), President, World Federation of Neurology 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. 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

Amytrophic Lateral Sclerosis (ALS or motor neurone disease) is a progressive neurodegenerative disease that can cause profound suffering for both the patient and their family. Whilst new treatments for ALS are being developed, these are not curative and offer only the potential to slow its progression. Palliative care must therefore be integral to the clinical approach to the disease. Palliative Care in Amyotrophic Lateral Sclerosis: From diagnosis to bereavement reflects the wide scope of this care; it must cover not just the terminal phase, but support the patient and their family from the onset of the disease. Both the multidisciplinary palliative care team and the neurology team are essential in providing a high standard of care and allowing quality of life (both patient and carer) to be maintained. Clear guidelines are provided to address care throughout the disease process. Control of symptoms is covered alongside the psychosocial care of patients and their families. Case studies are used to emphasise the complexity of the care needs and involvement of the patient and family, culminating in discussion of bereavement. Different models of care are explored, and this new edition utilizes the increase in both the evidence-base and available literature on the subject. New topics discussed include complementary therapies, personal and family experiences of ALS, new genetics research, and updated guidelines for patient care, to ensure this new edition remains the essential guide to palliative care in ALS.

'Motor Neuron Disease in Adults' reviews new information from 1998 as it applies to all aspects of motor neuron disease. Articles included use evidence-based methods to ensure that the new information is solid and advances the topic. The book can be used by anyone who provides any type of care to ALS patients.

User involvement has become an important part of health policy initiatives during the last decade, but how realistic is the concept and do all users want to be involved? This book brings the voices of people with serious illness, and those caring for them, into debate about how far health and social care services can reflect the views of users. Providing an overview of the literature on user involvement, the book looks at the policy and professional context within which user involvement is undertaken, in particular user involvement in pallative care. The authors discuss two key concepts - palliative care and empowerment - and analyse the role of self-help groups and new information and communication technologies in this context. The book focuses on the detailed narratives of people coping with three life-threatening illnesses - cystic fibrosis, multiple sclerosis and motor neurone disease - and in this way the views and experiences of the 'user' are brought into play to critique current policy and practice. Addressing a current health services issue in a refreshingly critical manner the text challenges the assumption that user involvement is either easy to achieve or that it is necessarily welcomed by all parties. It will be valuable reading for students on health studies courses, health professionals and policy makers in health and social care.

“The challenge in all settings is to make the difficultdecisions in a way that is defensible, justifiable, ethical, andequitable” So write Nick Freemantle and Suzanne Hill in their introductionto this important discussion on decision making in thereimbursement of pharmaceuticals. Based around a programmesupported by the World Health Organization, chapters by leadingacademics involved in the research tackle such major issues asinternational pharmaceutical policy, tensions in licensingpolicies, priority setting, and relationships between thestakeholders. Chapters include Development of marketing authorisation procedures forpharmaceuticals Interpreting clinical evidence International pharmaceutical policy: health creation or wealthcreation? Development of fourth hurdle policies around the world Economic modelling in drug reimbursement Priority setting in health care: matching decision criteriawith policy objectives Tensions in licensing and reimbursement decisions: case ofriluzole for amytrophic lateral sclerosis Relationship between stakeholders: managing the war ofwords Medicine and the media: good information or misleadinghype? How to promote quality use of cost-effective medicines Using economic evaluation to inform health policy andreimbursement: making it happen and making it sustainable Pricing of pharmaceuticals Evaluating pharmaceuticals for health policy in low and middleincome country settings. Besides the controversial issues there is a wealth of practicalinformation including economic modelling and the experiences fromthe WHO programme, providing readers with workable examples. Thisis essential reading for clinical researchers in pharmaceuticalsand policy makers everywhere.