Health law expert to discuss patients’ rights at GBS group

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Health law expert to discuss patients’ rights at Guillain-Barré Syndrome conference

Former New Zealand Health and Disability Commissioner Ron Paterson will deliver a keynote address on patients’ rights at a conference in Wellington later this month focused on the rare disorder Guillain-Barré Syndrome.

"Understanding Guillain-Barré Syndrome and CIDP" is the fifth national conference organised by the Guillain-Barré Syndrome Support Group of New Zealand. It will be held from 29 April to 1 May 2011 at the Brentwood Hotel in Kilbirnie, Wellington.

The biennial conference is for people with Guillain-Barré Syndrome (GBS) and its variants such as Miller-Fisher Syndrome, acute motor axonal neuropathy (AMAN) and others as well as patients with chronic disorders such as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and related disorders. One of the main aims of the conference is to provide a forum where people with GBS and their carers can share experiences and benefit from the experience of others in situations similar to their own.

GBS is a rare autoimmune disorder, where the body's own immune system turns on itself and attacks the peripheral nervous system causing temporary muscle weakness, sometimes to the point of severe paralysis, sensory loss and pain. Often triggered by a preceding illness, GBS has an incidence of 1-2 people per 100,000 or about 40-80 New Zealanders a year. CIDP is a chronic or ongoing neuropathy that closely resembles GBS.

Professor Paterson, who was New Zealand Health and Disability Commissioner from 2000 to 2010, is currently Professor of Health Law and Policy at the University of Auckland and is writing a book on medical regulation as New Zealand Law Foundation International Research Fellow.

Professor Paterson’s presentation will explain the background to New Zealand’s Code of Health and Disability Services Consumers’ Rights, and the system for promoting and protecting patients’ rights in New Zealand. He will discuss the general hopes and fears of patients with serious acute and chronic health conditions, and what they expect from the health professionals caring for them and the health system, before looking at the specific needs of patients with GBS and CIDP, their families and support people, and areas of the Code with particular relevance to this group.

“Key issues I will cover will be the right to information and effective communication, the concept of duty of care, the question of competence and the importance of compassion,” said Professor Paterson.

“I will draw on cases from my time as Health and Disability Commissioner to illustrate the lessons to be learned in situations where the needs and legal rights of patients are not met.”

Professor Paterson, who holds law degrees from Auckland and Oxford universities, is recognised internationally for his expertise in regulation of patients’ rights and healthcare quality improvement. He is co-editor of the textbook Medical Law in New Zealand (2006).

The 2011 GBS/CIDP conference is open to current and former GBS/CIDP patients, and their families and caregivers. It will also appeal to neurologists, physiotherapists, occupational therapists, nurses and general practitioners. The conference, which will be officially opened by Labour MP Steve Chadwick, Patron of GBS New Zealand, includes two keynote presentations by Professor Gareth Parry, Medical Director of the Clinical Neuroscience Research Unit at the University of Minnesota who has studied GBS and its variants for the best part of four decades. There will also be presentations by former patients, an experts' forum with Q & A time and group discussion sessions.
For more information visit the GBS NZ Support Group’s website at www.gbsnz.org.nz.

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