Coordinating Your Team
Don't let all the various health care professionals listed here overwhelm you. Very few people with MS will need all of them, and most will need only a few. The important thing to remember is that you are the team captain. Even though it can be difficult to keep track of all the players, these professionals are there to help you treat and cope with MS.
Even with the best of intentions, today's health care professionals can be so overburdened with insurance regulations, heavy patient loads and administrative duties that things can “fall through the cracks.” It's up to you to make sure they don't. Following are a few ideas to keep the scorecard straight.
Be a Good Record Keeper
Keep a notebook and use it specifically for medical information, preferably one with a calendar. A good daily planner serves several different functions and has various options to choose from including a calendar, an address book, and a space to write notes in for specific days. List all of the members of your health care team. Use the calendar to keep track of appointments and use the daily notebook section to record the outcome of the appointment so it is at your fingertips when you need to refer to it. Have a good filing cabinet and a system set up to file insurance papers, medical records, and other important paperwork.
If you are organizationally challenged, ask a family member or a social worker to help you set up a functional system for record keeping. Not having to dig through a pile of papers every time you need something will save you time and reduce your stress load. Even those who live without a chronic illness have a hard time with hills of paperwork to sift through. Keeping ahead of the game will allow you more time to do those things that are not MS-related.
Keeping track of your appointments is essential. It is also important to prioritize your appointments and tasks. For example, you should check with your insurance carrier before making an appointment with a neuropsychologist to make sure you're covered.
Many people aren't aware that care managers are available — a relatively new professional who helps plan and organize care for people with illnesses or disabilities. These professionals can coordinate care with community services, such as arranging for meals, finding and hiring needed help, finding a lawyer, or even finding someone to mow the lawn.
Don't Assume Anything
It is important that your doctors communicate among themselves, but don't assume they do. Make sure each clinician makes a copy of all your records and reports and sends them to the other members of your health care team. Of course, you'll want a copy for your own records. Your primary care physician or your neurologist (whomever you've selected) will be the coordinator of these services. Make sure that he receives copies of your records from your other clinicians and that he's always kept in the loop.
In addition to helping your doctors communicate with each other, you also need to be a good communicator. Let each clinician know about other recent appointments you've had or if your medications have recently changed.