Have you ever left a doctor’s appointment feeling uneasy? Maybe you didn’t get all your questions answered. Maybe you wish you had more time for your doctor to explain something. Or maybe you felt like your voice wasn’t being heard.
Living or caring for someone with Hunter syndrome can come with many challenges. It may be hard to keep track of things when you’re working with multiple doctors and trying to absorb new information. Below, you’ll find tips on how to stay organized and communicate well with your healthcare team.
Working as a team
Because Hunter syndrome is a complex condition, you may be working with different types of specialists. These may include (but are not limited to):
- Genetic counselors
- Ear, nose, and throat specialists (ENTs, or otolaryngologists)
- Speech therapists
- Physical therapists
You might think of yourself and your healthcare providers as a sports team. Just like a sports team, everyone is working together to achieve the same goal—in this case, helping you or your loved one be as healthy as possible.
What is your role on the team?
You may find yourself acting as a player AND a coach. As a player, you are active in the decision-making process. As a coach, you are making sure all the players are working towards the same goal.
Making sure your voice is heard
If you feel like you’re not understanding something, it’s okay to ask your doctor to communicate with you in a different way. Below are a few suggestions to help you start the conversation:
- “I feel a little in the dark here. Could you explain that again, slower this time?”
- “This is what I took away from our conversation. Can you let me know if I’m understanding this correctly?”
- “Sorry, I don’t think I’m following you. Can you explain that in another way?”
If you feel like you and your doctor aren’t communicating well, you might try using one of the following:
- “I want us all to be on one team. To me, that means we make decisions together and communicate well. Having phone calls as needed might help this.”
- “I’m worried that we’re not communicating well. Here’s why I feel that way.”
- “I don’t feel like we’re communicating as well as we could be. Could we talk about that?”
Once you get the conversation rolling, don’t be shy about asking questions. There is nothing more important than your or your child’s health. Just like you wouldn’t buy a car without asking questions, don’t be afraid to ask your doctor questions.
If you still have any concerns at the end of the appointment, let your doctor know. Ask if the appointment can be extended, or if a phone call or virtual appointment can be scheduled. If you work well with another staff member, see if they can address your questions or join you at future appointments.
It can be helpful to be direct, but remember that you’re all on the same team. It’s okay to let your doctor know when something isn’t working, but it’s also helpful to discuss with them what IS working. This can help you work together to discuss improvements and how to communicate better.
Sharing important information
Specialists on your team will need certain information to help them understand your or your child’s health. Some examples include:
- Measurements they get from drawing blood, such as cholesterol level
- Height and weight
- Genetic information, like genetic tests or family history
- Duration and severity of symptoms
- Lung function
Your health insurance company may also need certain information. For example, if you or your child needs physical therapy, your doctor may need to give them information on certain physical functions, like the range of motion of a particular joint.
One way you can help is by gathering as much information as possible. Try taking note of any changes you or your child may be experiencing. The more information you provide, the better. If you notice a change in existing symptoms, or if something doesn’t seem right, be sure to tell your doctor as soon as possible.
Tip: Ask what to look out for
During an appointment, your doctor might ask you to keep an eye on something. It’s okay to ask how they want you to capture and report the information. “What do you want me to look for?” is a great starting question. Something that may seem normal or that you think will go away on its own may be a sign of a potential problem.
When keeping track of your or your child’s health and treatment, being organized can help. Lists are very helpful for some people. Some like to keep lists in a notebook or binder. Others prefer to keep them on their phone.
Here are a few list categories to consider:
Healthcare team contact list: Include names, phone numbers, office hours, and anything else that’s important. You can also include the nearest hospital and emergency department information.
Medication list: Include medications, dosages, directions, and the prescriber. Be sure to share this with loved ones and team members who might need this information. Also include any allergies.
Health insurance information: List the insurance company, policy number, and member phone number. If you have an assigned case manager, you can include that information as well.
The health insurance list is also a great place to document conversations with your insurance company. Writing down the date, time, and name of the person you spoke with can be helpful down the road. You can also include other details of the conversation, including any actions from the insurance company.
Questions or notes for the doctor: Jot down any questions or notes that come to mind so you have everything you need for the next appointment.
Living or caring for someone with Hunter syndrome can be challenging. Communicating with your healthcare team shouldn’t be. By being proactive in your or your child’s care, keeping information organized, and making sure your questions are not only heard but answered, you can help every member of the team work better, together.
Finally, remember that there are others going through similar experiences. Getting support from people who have walked in your shoes can be a great source of information and comfort. Learn about helpful Hunter syndrome organizations.
Tagged in: Healthcare team, caregiver, staying organized, communication, information about your condition