Receiving multidisciplinary ALS care, based on best practices, is critical for people living with the disease. The ALS Association’s Certified Treatment Centers of Excellence and Recognized Treatment Centers are dedicated to doing whatever it takes to provide compassionate care in a supportive, family-oriented atmosphere to help their patients live longer and stronger lives.
One such center is the Phil Smith Neuroscience Institute at Holy Cross Health located in south Florida. “No matter what, the patient always comes first,” says Tina Duane, Regional Program Manager at The ALS Association Florida Chapter. “We’re so fortunate because where some clinics may have month-long waiting lists to see new patients, the Phil Smith team is determined to get new patients in within a week or two at the latest.”
Tina says she has an unlimited number of stories about the clinic team and how they consistently go above and beyond to support and treat all of their ALS patients. One in particular she shared involved the team’s clinical social worker, Maricela Pereda, with whom Tina works closely with on clinic days.
“Our clinic is very fortunate to have a respiratory therapist as part of the team from a local respiratory service company, Millennium Respiratory,” says Tina. They attend the multidisciplinary clinic each week along with the clinic’s respiratory therapist and provide hands-on instruction and patient follow-up. “They are available 24/7 via phone and even make visits during late night hours and weekends to assist with emergencies on patient devices,” she said.
Some families during their ALS journey choose to transition to hospice for management of their care, which can be difficult due to the changes in contracted service providers which are often different from those working directly with the clinic. When Maricela learned that Millennium was not an option for those making the change, she immediately jumped into action to ensure her patients would continue to receive the same level of personal care they were accustom to.
“There are no hospice programs in our area that contract with Millennium, but rather use a respiratory company that is not familiar with the ALS diagnosis,” said Tina. Furthermore, they had found the services that were available typically did not provide the same level of personal care that’s critical to the needs of a person living with ALS.
After hearing the disappointing feedback from quite a few families, Maricela took it upon herself to go up the channels with a local hospice to see how they could incorporate Millennium Respiratory as a designated vendor, particularly for her ALS patients. After many calls, emails and working as the liaison between hospice and Millennium, an agreement was finally reached, and the change was made to accept the preferred vendor.
“Now our patients who enroll with this hospice will have an even smoother transition and not experience any lack of specialized care from a respiratory standpoint,” said Tina. “And it’s all thanks to the dedication and diligence of our clinic social worker who truly goes above and beyond for people living with ALS.”
Special thanks to Maricela Pereda and the team at The ALS Association Florida Chapter for allowing us to share their story about how they are doing whatever it takes to support people living with ALS.