In October 2010, Jeff Sparks and Tracy Ryan arranged a presentation on respiratory health with a respirologist in St.John’s, Newfoundland and Labrador. At the time, the presentation was a revelation to clients and staff at the Janeway, who had not heard a great deal about the importance of breathing aids, and respiratory health. Following on that initial presentation, communication was maintained with the Janeway clinic staff on the topic; one of the clinicians subsequently attended the workshop given for healthcare professionals by Dr. John Bach in Halifax in the fall of 2012.
Muscular Dystrophy Canada and March of Dimes held Health and Wellness Information Days for people living with a disability, on October 24 2013 in St. John`s. One of the key components was a workshop on respiratory care by Vital Air. The staff at Janeway not only took part in this initiative, but promoted this event as well. The day turned into a great forum for connecting persons with a disability, caregivers, and professionals on key issues. With lively discussions, and passion, it is evident that there is a need for more advocacy, and spaces to bring together people on disability issues whether it be respiratory care, or transportation.
All of these initiatives have led to ongoing communication and with the help of Janeway, has made a difference. The clinic coordinator, Jeanette Ivey, had long advocated for a respirologist, and a respiratory technician to be included as part of the clinical team. This past year, that has indeed happened, but the Janeway team has taken it a step further. When we visited the neuromuscular clinic in October 2013, we learned that they have organized patient visits so that those who are at the staff of needing respiratory support attend clinic on the same day. That change in approach ensures the patients can be followed more closely, and the respirologist will have more dedicated time with them. They have also integrated respiratory health more generally into all neuromuscular patients’ monitoring and care plans. Finally, they have been advocating with patients to gain them access to breathing aids such as cough assist machines.
While we can’t claim credit for all these changes, there is no doubt Muscular Dystrophy Canada has played a role in the Janeway Clinic’s integration of respiratory health into their clinical practice for people with neuromuscular diseases.