Nurse advocates help patients navigate medical maze

    The next time you’re facing a big medical decision, it might be nice to have someone listen-in and translate the doctor-speak into plain English.

    Gail and Antonio Smalls, who live in the Cedarbrook section of Philadelphia, got help from a nurse advocate.

    The Smalls 17-year-old daughter, Antonia, has rheumatoid arthritis, and they are trying to decide if she should have knee replacement surgery.

    “She just woke up one day, with what we thought was a sore knee. It was achy, it just continued and persisted until the inflammation just spread throughout her body,” Gail Smalls said.

    For years, countless times, Smalls filled out the same waiting-room questionnaire: It asked if she was overwhelmed managing her child’s health.

    “I thought by checking off: ‘Yes, I need help,’ they were going to connect me with help, but each month I filled out the same form and nothing,” she said.

    This year, by coincidence, the Smalls’ health insurance plan linked them with Guardian Nurses Healthcare Advocates, an agency based in Montgomery County.

    Smalls says she appreciates the support from nurse advocate Joanne Simone.

    “Seems to make the doctors a little nervous, but it’s really good,” Smalls said. “To me, it appears that they feel like there’s an extra set of eyes watching them.” 

    Simone found the doctor–and booked the appointment–at Penn Presbyterian Medical Center to get a second opinion from orthopedic surgeon Gwo-Chin Lee.

    “You know the questions but when you get in that room you go blank, and you need somebody that’s going to slow things down and make sure you get your questions answered,” Simone said.

    The cartilage on Antonia’s knee is worn down. Bone rubs against bone. But Instead of a major surgery, Lee suggests a more conservative step: cleaning out the inflamed tissue around the knee joint.

    “There’s actually data on young patients undergoing joint replacement surgery, and it’s not bad, but again it’s something that you have to weigh the potential risks and the benefits of it,” he explained to the family.

    During the appointment, Simone helps guide the discussion.

    “Can you elaborate a bit little more for the synovectomy? Because I think coming in today, I think an opinion from another orthopedic surgeon was knee replacement, so that’s kind of what’s been on the forefront of everyone’s mind,” she said.

    Lee explained that synovectomy is only a partial fix.

    “So if you go in with the realistic expectation that,  ‘I’m going to take my pain from a 9 or 10 to like 4 or 5, a synovectomy is probably a reasonable option to consider,” he said.

    Simone has been a registered nurse for nearly 40 years, and says–most times–the doctor doesn’t mind having her tag along.

    “I thought it was fine,” Lee said in the hallway after the appointment. “The patient advocate was not intrusive, didn’t interfere with the flow of the appointment, and so I think it also brought another perspective, that oftentimes the patients don’t have.”

    The Smalls’ insurance plan Law Enforcement Health Benefits initially linked the family with a nurse advocate, not because the family was facing a tough choice, but because Antonia’s prescriptions got pricey.

    Just one of her injectable medications costs $2,000 a month. After the Smalls agreed to work with a nurse case manager, their co-payment was lowered from about $100 to just $20.

    “They have a cap on their prescription plan so they [the insurance plan] want to make sure, if they are getting expensive medications that they are appropriate. They’re seeing their doctor regularly, that the patient is doing everything they should be doing and likewise that the physician is,” Simone said.

    At Guardian Nurses, most of the company’s business comes from corporate clients, unions and large employers who want to hold down costs for all their members.

    The fee for private-pay patients begins at $200 an hour. Sixty-six-year-old West Chester resident Jerry McGlone says it’s worth it.

    “I’ll tell ya, a lot of these doctors think they’re Gods. They really do,” McGlone said.

    When his nurse advocate was in the room, McGlone says his questions got answered.

    “There was kind of a different attitude with them,” he said. “So right there was more than enough. I can’t say enough about that.”

    The health care advocacy business is expanding. Some firms will help you navigate the medical maze, others specialize in untangling health-insurance red tape.

    McGlone says Guardian Nurses helped him sort through the glut of hospital and physician choices across the region.

    “You can go online and find a zillion doctors and they all have biographies and they’re all terrific–and blah, blah, blah–but when push comes to shove, you want to know somebody who knows those people,” he said.

    When unions or insurance companies pay for this help, they usually buy a certain number of hours on retainer. Normally it doesn’t cost the patient and the advocates do not get paid based on savings they deliver.

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