How do neuroscience nurses learn about caring for patients with Rare Neuromuscular Diseases?

Wilma Koopman, Nurse Practitioner, PhD, MPHE Program coordinator –  As a nurse/ nurse practitioner, I spent 40 years treating and managing individuals and families living with a Neuromuscular Disease. Often nurses are their key supports, learning best care practices, often in tandem with patients and families. But alas, this knowledge is largely invisible. With a passion for disseminating nurses and patients knowledge to improve medical practices, I am embarking on a new adventure. Please join me.

Health professionals must work in partnership with patients, caregivers, and colleagues to incorporate the best evidence available, combat misinformation, and meet healthcare needs. Consensus treatment guidelines are often disease oriented, physician driven, and geographically contained. Advancing the call to incorporate ‘patients’ voices’ in disease management protocols, representatives from patient organizations are now a standard quality
requisite. Have you ever wondered why allied health professionals -nurses, physiotherapists, respiratory therapists, speech language pathologists and others are frequently excluded from being consulted on guideline development? While collaborative interprofessional care is one of the hallmarks of patient centred care, without the voices of all healthcare professionals, treatment guidelines are incomplete. Importantly, if nurses’ voices are absent, where is that
knowledge stored? How do they teach colleagues best nursing practices?  Importantly, how can nursing professionals contribute their perspectives and expertise to treatment guidelines?

Think about the nurse who is caring for a patient admitted with Guillain Barre Syndrome (GBS). A rare neuromuscular disease that often presents acutely, where patients may be totally paralyzed, require respiratory support, and one on one nursing care may be essential. It is highly likely that GBS was not part of the nurse’s education.  Where do nurses go to obtain information on how to care for this patient? Do they seek out a nursing colleague, read hospital
standards of care, or search the internet? A recent study of patients’ experiences and perceptions of GBS care, noted that an important area that needed to be addressed was the lack of knowledge about GBS among health professionals.

There is an existing education gap across Canada regarding rare neuromuscular diseases, that needs to be elucidated and addressed.  How did you learn to care for these patients?
I would love to hear your thoughts.