“We wanted doctors to sit and listen to us”: A consumer story from the 2016 National Center conference
Patient-centered care cannot be a reality without centering the stories and voices of health care consumers who have experienced our health system’s failures. To make sure the voices of health care consumers were heard, we invited eight pairs of consumers and their health care professional counterparts to take part in Putting Care at the Center, the inaugural conference of the National Center for Complex Health and Social Needs. One of our consumer attendees was Ms. Lezrette Hutchinson, a consumer advocate with the Medicare Rights Center Duals Coalition.
Ms. Hutchinson was a mother of four, working at New York’s Board of Education when she was diagnosed with sarcoidosis in 1999. With little information about the disease she had been diagnosed with and inadequate support from her medical team, Ms. Huchinson became extremely ill. In 2001, she became homeless for a time after a fire burned down her home. The side effects of her sarcoidosis medications included severe depression, and for years she was neither able to go to work nor to take meaningful part in her children’s lives as they grew into adulthood.
That all changed when she joined a sarcoidosis clinic at Mount Sinai Hospital. The staff there was caring and supportive, and helped her understand her illness. “I became an activist,” she says, “so I could let new people know it was going to be ok.”
Along with five other patients with sarcoidoisis, Ms. Hutchinson formed a support group and started teaching doctors how to care for a disease that could affect any organ of the body. “We wanted doctors to sit and listen to us,” she says. “They don’t have sarcoidosis— we do.” She joined the board of her medical center to implement changes that she and her fellow advocates knew would improve patients’ quality of life, formed a recreational support group called the 50s-plus Program, and then joined the Working Group for People on Medicare and Medicaid, part of the Duals Coalition of New York’s Medicare Rights Center.
Ms. Hutchinson knows from experience the danger that a fragmented health care system can put patients in, and she is dedicated to doing everything she can to fix it and to empower other consumers to do the same. She decided to come to Putting Care at the Center to learn about what she calls the “new age” of patient care. “Health care should be in a circle” around the patient, she says. People with chronic illnesses should have their whole team of specialists in the same building, on the same floor, with navigators available to help those who would otherwise slip through the cracks.
She says that better education for consumers should be a priority of the National Center for Complex Health and Social Needs. “Just the way providers go to all these seminars to teach them how to do their jobs, being ill is a job that we need to learn how to do. We do the very best we can but a lot of times we could do better.” Patient-centered care means that consumers should be getting hard copies of information about their diagnoses, prescriptions, and rights. Ms. Hutchinson is currently working with the Medicare Rights Center on a tip sheet for Medicare consumers who want to exercise their right to view and verify the medical information in their Managed Long Term Care Plans.
“Yes I am ill, yes we are ill, we know it and live with it every day,” she says. “Quality of care is what’s important. Speak to us in a language we understand.”