ROYAL OAK, Mich. (WXYZ) — Before the Purtill family joined the PATCH program last year, they spent hours in emergency rooms whenever complications arose with their 3-year-old daughter Luciana.
“She has a genetic disorder and that causes multiple medical special needs," Marisa Purtill explained.
PATCH was run through Beaumont Health and Alternate Solutions Health Network, based out of Kettering, Ohio. Recently, Marisa and her husband Corey learned ASHN would no longer be involved in the program.
Panicked as to what that would mean for Luciana's care options, Marisa started asking questions.
“I reached out to our team first, our nurse. And they basically said we know nothing. I don’t have anything to tell you. We don’t know what is going to happen.”
SEARCHING FOR ANSWERS: We're working to learn how changes to a specialized palliative care program for kids @BeaumontHealth is going to impact patients. Parents tell us PATCH has been vital to their families. Take a listen to this father @wxyzdetroit pic.twitter.com/7xXHGVojGf— Jenn Schanz (@JennSchanzWXYZ) December 30, 2019
Not only does PATCH allow Luciana to get treatment and therapy at home, it provides a social worker to help with insurance claims, and provides necessary equipment that would cost thousands.
“We would be lost," said Corey Purtill, if the program ended.
“We would go back to rushing to ER for every little thing," Marisa said.
A spokesperson for Beaumont Health said Saturday the program will remain open, serving 30 patients.
“We are committed to our patients and families and the PATCH program is not being shut down. We are also working with others to address the statewide need for these kinds of services," said spokesperson Mark Geary.
Beaumont and ASHN both confirmed that the PATCH would be moving back to Beaumont.
Geary told Action News Beaumont staff is in the process to informing all patients. He said that while PATCH is moving back to Beaumont, patients will still have the same services and care. He also said Beaumont wants to bring the ASHN staff back to Beaumont.
Ray Scodeller's son Tommy relies on the program.
“We spent less than one day in the hospital really because of the PATCH program. We’ve got the equipment at home. We’ve got nurses coming to check on him. And they really know him," Scodeller told Action News.
Action News reached out to ASHN several times, and did not receive answers to any of our specific questions about the program, only that PATCH was moving to Beaumont.
The Purtills and the Scodellers said they've gotten little communication from either health network explaining what, if anything, this change will mean for them.
“It’s frustrating. Just to not be able to talk to somebody," Scodellers said.