On Saturday April 2, 2016 the Global CMTC-OVM US Organization was represented at the annual American Medical Student Association’s conference in Arlington, Virginia. We were invited by Mary Dunkle, Vice President of Educational Initiatives at NORD, to advocate for our members in NORD’s exhibitor’s booth.
It was exciting to share about CMTC and other vascular malformations, with the physicians of the future. With approximately 7000 rare diseases, the topic is nearly mute within the circurriculum found in medical and nursing schools.
Also in attendance was Melissa Patterson from the Narcolepsy Network, Suzanne Levere parent liaison for Jack McGovern Coats Disease Foundation, Maggie Miller representing Smith-Magenis Syndrome, John Golfs of the Hereditary Hemorrhagic Telangiectasia Foundation, Jessica Armstrong from PHA (Pulmonary Hypertension Association). Dr. Marguerite Duane introduced herself, and was quite interested in learning about our organization. She also suggested we attend the Family Medicine Education Consortium in Pittsburgh, Pennsylvania. We have already made contact with the appropriate representative, and we will be an exhibitor for the 3 day conference in October 2016!
In addition, Becky and Ellayna participated in creating a video that NORD will be making available to medical students, to educate them about rare diseases. Becky and Mary have discussed the importance of conferences like this one, as well as the need to provide presentations at medical schools. Becky explained how beneficial it would be for patients, if nursing schools were included in the presentation circuit. A nurse needs to be informed, especially when caring for a patient with a vascular malformation. A nurse is often the first to see the patient, and also the one who spends the most time with a patient. The following is the model a nurse follows when caring for a patient. This protocol demonstrates why a nurse needs to be informed as much as possible.
The Nursing Process:
- ASSESSMENT – The collecting/recording data, validating information and listing any abnormalities in the data.
- DIAGNOSIS – A nursing diagnosis involves critical thinking and clinical judgement based on NANDA International. Nursing diagnoses communicate the professional judgments that nurses make every day to our patients, colleagues, members of other disciplines, and the public.
- PLANNING – Establishes SMART (specific, measurable, attainable, realistic/relevant and time restricted) goals in order to achieve the desired outcomes such as reducing pain or improving cardiovascular function.
- IMPLEMENTATION – The actionable part of the process where the individual and medical team implement the care plan, SMART goals, and interventions so that the individual can achieve their goals and the process can be evaluated and measured.
- EVALUATION – The part where the medical professionals assess and evaluate the success of the planning and implementation processes, to ensure that the individual is making progress towards his/her goals and is achieving the desired outcome.