Finding Care Outside the CF Team: As CF care evolves, many people find themselves working with primary care providers and specialists outside of their core CF care team. Finding clinicians who are knowledgeable about CF can be a challenge. When people found a good match, they sometimes credited their CF team for helping make the connection.  

 

Coordinating Among Clinicians: People describe various experiences with having or not having a clinician to help organize their care. Some become their own coordinators among their specialists, primary care providers, and CF care teams. 

People with CF expect their specialists and CF care teams to talk to each other, and many feel that communication falls short. Some find themselves stepping into the role of care coordinator: sharing information across providers, following up, and sometimes seeking a second opinion from their CF team before moving forward.

 

What ideas or actions sparked for you? 

For People and Families:

• Ask your CF care team for recommendations and warm hand-offs to specialists with CF experience. 
• Getting a ‘second sign off’ from CF clinic teams about treatment decisions makes some people more comfortable. 
• Some specialists and primary care providers appreciate being connected to the CF Care team. 
• Advocate for better coordination when needed. 
• People and families sometimes might need to take on the responsibility of coordinating their own care, if the systems do not coordinate. 

For Healthcare Professionals:

• People appreciate when their CF care team helps them find and cultivate relationships with specialists, including providing warm handoffs.  
• Demonstrating knowledge of CF or taking active steps to learn about CF matters a lot. 
• Balance your knowledge about CF, with respect for the expertise of people with CF and their knowledge of their own bodies.  
• Ask people with CF about how to better coordinate care. They have creative ideas such as case conferencing and revisiting system workflows so that people with CF can see specialists and primary care providers who are more experienced with CF. 
• Many people and families express wanting their specialists and CF care teams to communicate and coordinate more effectively together. Take action to improve these systems.