Care coordination is an optimal way to help you manage your illness, but often very difficult to find. Care coordination in the U.S. is supposed to be done by the primary care physician (PCP), but by default, this usually becomes the responsibility of the patient or the parent/caregiver.
Patients with mitochondrial disease usually have a PCP, often an internist or pediatrician. This person should be local, available, and optimally accepted by your insurance plan. He or she should know the local resources and be able to help you with emergency care. Your PCP should be willing to listen to you and work with you, and should learn with you over time how to manage your mitochondrial disease. This team member needs to be willing to communicate with and work with your mito specialist, as well as with your other sub-specialists. Some mito specialists will insist that you MUST have a PCP to keep you safe.
Patients should also have a mito disease specialist. This person may not be local, but it helps if the office is as convenient as possible. The mito doc is usually a metabolic doctor, geneticist or neurologsit who is well versed in mito, and will be your expert resource in making a diagnosis and managing your illness. The mito doc will usually work with you to develop a treatment plan, which you and your other healthcare providers (HCPs) will follow. You may have more than one mito specialist; if you do, make certain they are working together. Also, a local mito specialist who is responsive and available to you and your PCP may be more effective than going to the “best” mito specialist in the country. Find out if your local mito specialist interacts with others around the country and is comfortable when you bring questions. A great resource to find a mito specialist is through the Mitochondrial Care Network, or the physician’s list.
Mito commonly affects multiple organ systems, and every affected organ system equals a different sub-specialist. Patients may have a cardiologist, GI doctor, neurologist, pulmonologist and many more in addition to the PCP and the mito doc. Getting to all these appointments, and communicating the results and each separate treatment plan can be overwhelming and confusing. Care coordination is needed to keep all the details straight, make sure that the lines of communication are open and that everything that happens is in the patient’s best interest.
How can you do all this, and still have a life?
You may be able to obtain case management through your insurance company. The case manager can help you access care and services, and coordinate the insurance minutiae that can eat up so much of your time and energy. You may be able to access case management through state-run programs, such as the Medicaid Model Waiver program.
Your PCP and/or your Mito doc may be able to help you with care coordination. It is very helpful to identify a “contact person” at each office (and the sub-specialists’ office as well). This person can be called for quick access to the doctor’s ear, and should be nurtured and warmly thanked and appreciated. This is another reason to make certain you have a good relationship with the nurse in your PCP’s office and the nurse or genetic counselor in the office of your mito specialist. They are very good at “triage” and helpful for care coordination.
Your doctors may be amenable to the use of an email list specifically for you or your child. This can be an excellent way to ensure that all interested parties are aware of changes to a patient’s treatment plan or status, but is no substitute for direct contact in case of emergency. To set an email list up, ask each of your doctors (including all the sub-specialists) if they would be willing to be a member of the list, stressing that receiving the email would not constitute responsibility for provision of emergency care (unless the doctor wants to and contacts you back). Ask the doctor which email address to use. You may also add other HCPs, nursing agencies, teachers, etc. if appropriate. Use this list for matters of notification, such as lab results, med changes or status changes. If a doctor wants to reply and hits “reply all,” their comments will be made known to the whole group. No HCP is obligated to reply unless they want to and have something to add. You are responsible for contacting the doctors directly if you have more urgent questions and need answers soon, or if you need to notify a doctor who is not on the list. There is a paper trail for all of this, which can go in the chart.
Another great resource is the MyMito App platform. The tool allows you to manage all aspects of your care and include each member of your care team through the HIPAA compliant platform. This is a great way to streamline communication and give everyone on your team access to the same information.