October 20, 2015
By: Kim DiGioia, MSPH
Melissa Adams VanHouten has received excellent healthcare. Unfortunately, among patients like herself with gastroparesis, she’s found that to be exceedingly rare.
Gastroparesis is a chronic condition for which there is no cure. After being diagnosed with this disease that she had never before heard of, VanHouten received a brief explanation and instructions to follow up in six weeks. Without support from a care team and getting worse at home, she turned to the Internet and connected with a few small Facebook groups of people who shared her diagnosis and experience.
Eventually VanHouten found a gastroenterologist whom she trusts and really respects. He talks to her about her goals for quality of life, and he’s clear that while there is no cure, he will work with her to ensure these goals are met.
Many others in the online support groups do not have access to care like this. They have to travel long distances to find someone who can treat their disease. Without proper care management, they are often in and out of the emergency room. They are treated as drug-seekers. And they feel incredibly discouraged. Says VanHouten, “People really need help. There is such a lack of information. We really just need a way… to get some decent healthcare.”
VanHouten thinks a major driver of these issues is a lack of communication and huge gaps in the system. Gastroparesis patients might have a primary care doctor, a gastroenterologist, sometimes acupuncturists, chiropractors, and dieticians or nutritionists… “A host of people who are all giving you different advice and focusing on different areas of your care.” She believes care could be drastically improved if there were an organized care conference or one person managing the whole spectrum of treatment.
VanHouten’s experience interacting with the healthcare system and hearing other patients’ stories has inspired her to act as a RightCare Action Week captain and spearhead online efforts to spread the word that better care is possible. She has organized a RightCare Action Week Story Slam and Photo Blitz—both to take place on Facebook and Twitter.
When asked what she hopes will come out of RightCare Action Week, VanHouten says, as patients, “Being heard and seen and noticed and taken seriously would make mean the world to us.”