Ventilator-Assisted Living©

Summer 2001, Vol. 15, No. 2

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Home Mechanical Ventilation Conference, Lyon, France, 2001

More than 1,300 health professionals, joined by 84 ventilator users and their attendants, participated in the Eighth International Conference on Home Mechanical Ventilation in Lyon, France, in March 2001. The conference was organized by Dominique Robert, MD, Patrick Léger, MD, Allen Goldberg, MD, and Barry Make, MD, with the support of JIVD, Hôpital de la Croix-Rousse, the Association Française contre les Myopathies (the French equivalent of the Muscular Dystrophy Assocation), and IVUN.

The plenary sessions from the conference (in English) are available on CD-ROM for approximately $113 USD or 678 FF. Please contact OneScience, 47, rue Marcel Dassault, F-92100 Boulogne, Billancourt, France (+33 1 69 20 97 67 tel and fax, cgiguet@free.fr).

Barbara Rogers, ventilator user from New York and speaker on the "Travel With Ventilators" panel said, "I was extremely excited to participate. However, I was also a bit apprehensive, because I had never traveled to Europe with a ventilator and did not know what to expect. The staff at JIVD did an excellent job in allaying my fears and making me feel safe. They obtained a list of the equipment I would bring so they could have a backup available. Once I arrived, they provided notes on procedures and emergency phone numbers to call in case of any difficulties, which put my mind at ease. The sharing of experiences and information on a global scale was very uplifting. The inclusion of ventilator users into the clinical conference encouraged a true exchange of information and learning."

Anthony Giles-Peters, ventilator user and president of the Australian Ventilator Users Network, Inc., states, "There were so many interesting concurrent sessions, but of particular value were the 'Living Arrangements for Ventilator Users' and 'Travel' panels in the ventilator users track, and 'Ethical Issues in Long-term Ventilation' and 'Nonprofessional Caregivers' in the scientific program.

"The exhibits were good, and I had the opportunity to examine the new laptop LTV1000™ and the new CoughAssist™. The poster display and presentations were excellent. For me, the conference was a great success in providing the opportunity to meet ventilator users from many countries, to learn about the similarities and differences in clinical practice and community support services around the world, and to share our experience in Australia. The organizers did a great job in providing the necessary support to reduce hassles for the ventilator users in attendance."

Frank Hall-Bentick, another ventilator user from Australia, said, "I had the opportunity to see the accessibility features of the French public transport system, particularly the low floor trams (which we are bringing to Melbourne), and the Metro train system.

"I found the conference very interesting, but next time I would like to see the ventilator users sessions integrated throughout the clinical presentations, with more emphasis on informing ventilator users with severe disability about how they can live in the community."

Linda Bieniek, ventilator user from Chicago and speaker on the "Staying Healthy: Communicating with health professionals, maintaining general health and nutrition" panel, was struck with the hospitality and generosity of the Europeans. "As soon as I arrived for the conference, Dominique Robert, MD, and his associates went to great lengths to assist me. To relieve the untimely pressure sores that developed just before I left the US, they found masks for me, and even made one. They also taught me how to position the humidifier to prevent humidity from collecting in the tubing and waking me during the night.

"I was pleased to see Patrick Léger, MD, one of the conference organizers, along with several other physicians, in attendance at the ventilator users' sessions, demonstrating their strong desire to understand our experience, and to learn from and with us.

"Because this was my first trip abroad, the travel itself was a learning experience. In her useful suggestions on the 'Travel With Ventilators' panel, ventilator user Barbara Rogers cited the wide disparity of airline fees for using oxygen in flight – something I had already encountered when reserving my flights.

"As is often the case at conferences like this, some of the best learning and networking takes place 'off-line.' I came away from the conference with a renewed appreciation for the universality of the challenges ventilator users face, and how much we can learn from each other at an international forum, despite vast differences in our cultures and health care systems."

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