In living with myositis for 20 years, Ms. Marianne Moyer has learned some techniques that have been useful for her in navigating the many complexities of the healthcare system – in particular, “Managing Your Medical Team.” Ms. Moyer stated that the objectives of this presentation were to:
Ms. Moyer is a past chairwoman and board member of The Myositis Association. She is founder and co-facilitator of The Southwest Florida Keep-In-Touch (KIT) group. Below is an adaptation of what Ms. Moyer presented to our group.
Ms. Moyer discussed being prepared for doctors’ appointments. She stressed the importance of doing as much as you can in advance. Write down notes on your current situation, questions that you have, and lab results and/or reports that you have from other providers you may have seen since your last visit. It can also be helpful to send any new lab reports to your doctor before your visit, so that less time is spent reviewing them during your appointment.
It is also helpful to have a “buddy” (such as a good friend or partner) with you – someone who might be able to help with questions and answers to supplement your own. It’s important to decide the role that you want your buddy to play in advance (establish ground rules). For example, discuss how much you want this person to intervene, who takes notes, and what to do if the doctor directs the discussion to your buddy more so than to you. It’s important for both of you to be flexible.
Ms. Moyer offered the following tips to help during the appointment:
It is important to keep medical records in order to see and understand possible patterns of what has and hasn’t worked for you. This can also help you to communicate with your current medical team and future healthcare providers. You may want to consider taking them with you to all appointments.
Try to keep all your medical records in a way that is most convenient for you and that which you are most likely to use.
Technology has made it possible to connect to our medical information quickly. However, some people are more comfortable with writing things down. Ms. Moyer offered that she has found a 3-ring binder with tabs to work well for her. She suggested, first, to create an index and file the most recent information on top.
Suggested binder tabs include:
Ms. Moyer stated that keeping a log in addition to a binder can be a very useful tool for you to help communicate with your medical team. A log can be shorter and include:
An issue common for many is how to get your doctors to communicate with each other. Some will do this automatically if they are linked through the same electronic medical record system. Others may reach out through email.
To make sure that all your doctors are aware of your latest treatments, you may submit the records yourself. Sometimes, it’s possible to use a combination of methods. Ms. Moyer stressed the importance of having your medical team talk to one another. If it is not happening, Ms. Moyer stated that it may sometimes be necessary to look for a different doctor.
To ensure that you have your medical information available, especially in case of an emergency, Ms. Moyer suggested some tools that she has found to be helpful:
Ms. Moyer stressed the importance of planning for your needs and wishes regarding medical care and treatment, as well as your financial assets. It is important to consider preparing:
*All your doctors should have copies of these
Ms. Moyer ended her presentation by stating how challenging it can be to manage and coordinate all the aspects of your medical care when you have a chronic illness. It requires continual work. However, it can also provide a sense of control and empowerment over your own care and treatment. In essence, having some tools can help you be your own best advocate.
Learn more about the HSS Myositis Support Group, a free support and education group, held monthly, for people with myositis and their family and friends.
Summary by Suzan Fischbein, LCSW, Senior Social Work Coordinator