Work with your loved one to become part of the healthcare team
Once your loved one accepts your offer to help, you can help manage his or her treatment.
SBS treatment can be complicated, so your loved one probably has a team of people who address his or her different healthcare needs. In addition to a primary care doctor, this might include a surgeon, gastroenterologist, dietitian and maybe even a counselor.
When your loved one accepts your offer to help, you can also become a member of this SBS management team as a caregiver. Therefore, it’s important for you to know who the other members of this team are so you can help establish a trusted network of providers.
If your loved one is comfortable with you discussing his or her medical situation with the healthcare team, the specialists that make it up can teach you about different aspects of your loved one's care. And by actively engaging in healthcare discussions with your loved one or on their behalf, you are able to advocate for your loved one's well-being and help manage expectations.
Before meeting with your loved one’s healthcare provider for the first time, create a list of questions and concerns with your loved one that you can bring into the appointment. The SBS Patient History Tracker can be a great place to start. Also ask for a list of resources (both in and out of their practice) that you can take advantage of to make caregiving easier.
As a Primary Contact or Caregiver
If your loved one has made you the primary point of contact, you may then become directly involved in healthcare decisions. If this is the case, you'll need ready access to medical and personal information so you can more easily help make decisions about your loved one's care.
Remember to always ask your loved one if he or she wants your help, and try not to assume that you know best when it comes to your loved one's care.
Preparing for Appointments and Emergencies
SBS varies from patient to patient, so it’s very important that your loved one creates and maintains a comprehensive healthcare file. With their permission, you can help them manage this file, which should include medical history, medications and dosages, insurance information, and legal documents. It doesn’t have to be fancy — just choose a system that can be easily accessed, updated and shared.
In case of a medical emergency, be sure to have a list of emergency contacts handy at all times. Also be prepared to explain your loved one’s condition to emergency personnel or new healthcare providers.
Remember to plan out specifics well in advance if you or your loved one will have a change in routine, such as a trip away from home.
Navigating Insurance Claims
No one enjoys the paperwork or phone calls that come with insurance claims, but they can be easier to handle when you or your loved one is assertive and well prepared. If your loved one has granted you access to this information, prepare for your call beforehand by gathering all the information you need. This includes your loved one’s personal information (name, birthday, etc.), your relationship to him or her, the insurance policy number, the name of the organization that sent the bill, how much the bill is, the diagnosis code and what exactly took place during that appointment.
When you call, ask the insurance representative for his or her full name and extension number so you can try to work with the same person each time. Then, state your specific question or concern and directly ask for the information or help you need. Take good notes, including the time and date of the call and what you talked about.