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Kathryn Penner (l) learns to use her brand new CoughAssist™ device with her sister, Carol Preston.

In Edmonton, Alberta, a new clinic is transforming care with a simple idea: what if people living with neuromuscular diseases could receive care from a wide range of specialists in a single half-day, all under one roof?

Since November 2013, the Multidisciplinary Neuromuscular Clinic has been offering adults living with neuromuscular disorders exactly that opportunity. Housed in the 677,000 square foot Kaye Edmonton Clinic, the Multidisciplinary Neuromuscular Clinic provides one-stop shopping for its patients (and their families and caregivers), allowing them to see a number of specialists in a single visit.

In fact, on each visit to the clinic, patients meet with a full team of specialists, including the following:

  • cardiologist
  • neurologist
  • rehabilitation medicine specialist (physiatrist)
  • respirologist (specializing in patients with neurologic disorders)
  • registered respiratory therapist
  • speech language pathologist
  • dietician
  • registered social worker
  • registered nurse

If they need further support, patients can be referred to an occupational therapist, physiotherapist, home care team, home care respiratory therapist, psychologist or spiritual health counsellor.

During their visit, patients receive assessments of their neuromuscular problems, mobility, heart function, breathing, and nutrition and diet. The respiratory assessment addresses concerns specific to individual patients, such as sleep-disordered breathing, other lung disease (such as COPD or asthma), weak cough, risk of infection and smoking cessation. Patients also have their choking risk assessed, receiving a choking action plan, if necessary.

In addition to these services, the Multidisciplinary Neuromuscular Clinic has partnered with Muscular Dystrophy Canada to provide respiratory equipment to local people living with neuromuscular disorders. Clients who require a lung volume recruitment (or LVR) device for home use are given one courtesy of a Muscular Dystrophy Canada equipment grant. They are then immediately shown how to use it before meals, at bedtime and whenever they feel breathless or need help clearing their airway. They also learn exercises for their chest wall as needed.

In instances where patients need help keeping their lungs clear and staying out of the hospital, Dr. Janice Richman-Eisenstat (or “Dr. Janice,” as she likes to be called) will prescribe a CoughAssist™ machine. Since the Province of Alberta’s Respiratory Benefits Program does not provide these machines to those who need one, patients can apply to Muscular Dystrophy Canada for financial assistance with obtaining one of these expensive machines. Once patients receive their CoughAssist™, Dr. Janice and the Clinic’s registered respiratory therapist, Tanya Koenig, set up the machine and show them how to use it. The Clinic also has two CoughAssist™ machines (provided by Muscular Dystrophy Canada) that are available for loan to patients. In the first year of this partnership, the CoughAssist™ machines were loaned out five times with significant success.

Staff at the Clinic continue to meet with patients on a yearly basis (or more frequently, depending on their needs) to provide ongoing advice, assistance and evaluation. The Clinic also helps young patients who have graduated from the pediatric neuromuscular clinic at the Glenrose Rehab Hospital make the transition to adult care. As of mid-2015, the Clinic was working with approximately 300 patients.

Not surprisingly, patients and their families have been very happy with this multidisciplinary approach to care, particularly since it takes the hassle out of coordinating multiple appointments with specialists working in different buildings.

“Before, you might be lucky and see two [specialists] in one day,” says Martin Gordon, whose son, Dale, is a patient at the Clinic. The Gordons live 90 minutes outside of Edmonton, so being able to meet with all of the necessary specialists in one trip saves them a lot of time and effort. “It is unbelievable how easy it is,” continues Martin. “[The specialists] just come in, one after another.”

While the Multidisciplinary Neuromuscular Clinic excels at providing its patients with high quality care, it has also become an excellent place for team members to engage in innovative research. For example, two members of the Clinic—Dr. Janice, who is a respirologist (specifically a neuropulmonary rehabilitation specialist) and Dr. Stuart Cleary (a speech language pathologist)—are looking at the impact of using LVRs and CoughAssist™ machines on emergency room visits and hospitalization rates. They also received a $10,000 Quality Improvement grant from Alberta Health Services to improve the evaluation and management of swallowing, coughing and choking spells.

Similarly, the Clinic has worked to formalize training around choking—a serious concern for many people with neuromuscular disorders—and to educate hospital physicians about the respiratory concerns associated neuromuscular disorders. This includes providing medical residents with awareness training on the CoughAssist™ machine and taking them on clinical rounds. The goal, explains Dr. Janice, is to “impact the next generation of health-care practitioners” so that they are more aware of the respiratory needs of people with neuromuscular disorders.

All of these innovations in treatment add up to higher levels of care and quality of life for patients, says Dr. Danielle Peers, a disability studies researcher and patient at the Clinic. “The Multidisciplinary Neuromuscular Clinic has offered me a future with more years to live,” says Dr. Peers. “It lets me spend much less time chasing down doctors, giving [me] more opportunities, breath and energy to spend on pursuing my passions.”

This article is extended from a feature in the 2014-2015 Annual Report

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