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Your Tips on How to Get Off to the Best Start with a New Specialist

Posted by Colleen Young, Connect Director @colleenyoung, Nov 2, 2018

I'm looking for your best tips.
Starting a relationship with a new specialist can be daunting. You want to get off to a good start and ensure that you establish mutual respect and are able to develop trust. You want to know you're in good hands. What is their expertise and experience? What research are they doing? Will they listen and consider your input?

How do you get off to the best start with a new provider? What suggestions would you tell a friend who is going to see a new doctor?

+++UPDATE+++
Your tips in action: Tips shared in the discussion below made this video. It's great advice: For patients by patients.
https://youtu.be/Bw-RrEKTt60

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 8, 2019
In reply to @bdzwahlen "I always bring a summary of my medical history including all the information that Laurie suggested...." + (show)
@bdzwahlen

I always bring a summary of my medical history including all the information that Laurie suggested. I also list all preventive disease shots as well. I also bring a list of questions that I have.

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@bdzwahlen, You and I think alike! That's what I do. In fact my regular doctors know me well enough to ask me for my list! I would add one thing - also be sure to make the doctor aware of any specialists who are currently treating you.

I noticed that you have been active in the Hearing Loss group. My thought is that taking a list could be especially useful for someone with any degree of hearing loss. I imagine that it can be difficult to hear the doctor's response and nearly impossible to grasp all of the medical terminology. I know that it is for me, and I hear well. My doctors have even drawn illustrations for me to explain things! Has that ever happened for you?

REPLY
Beverly Zwahlen | @bdzwahlen | Apr 8, 2019

Hi Rosemary, I noticed that you are a volunteer mentor. Please tell me more about what you do as a Mentor. Since I retired 5 years ago I repurposed myself to be a Hearlng Well Advocate . I am also an HLAA N-CHATT Trainer. N-CHATT is a Network of Consumer Hearing Assistive Technology Trainers. The HLAA N-CHATT volunteer program is a partnership with Gallaudet University and the American Institutes for Research. It is being implemented under the Gallaudet-led Deaf/Hard of Hearing Technology Rehabilitation Engineering Research Center (RERC), which is supported by a grant from the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).

I help educate the public, friends, family, and speak at conferences to professionals and students of audiology. I never had support in my life and know how difficult it is to get the support you need. I pretty much self-educated myself. I have progressive hearing loss and have used hearing aids for over 40 years. It was only recently that hearing technology has caught up with my hearing needs. I had no support thru my entire education thru college so can really relate to those with hearing loss. I also worked in many challenging environments. I hear normally below 500 Hz with an extreme steep slope loss to 120 db on the left and 110 on the right. I will be having cochlear implant surgery on the left in June with an AB Slim–J which is the most appropriate for preserving low frequency hearing. I will also use the AB Naida Link Bimodal external components.

Back to the topic, Medical Care is very problematic for those with hearing loss. I very much self advocate and encourage others to do as well. Many health professionals mumble, look down, or don't face the patient when speaking. The general medical profession has little education regarding hearing health and hearing loss. I hope that changes soon as it's a major medical issue with many implications if not treated. It's great that many offices now give you a paper copy with appointments and followup instructions. I also ask medical professionals to write information down. I get a copy of all medical tests, MRIs, films, etc. and maintain my own medical records. I also use all the online medial websites to communicate with my care givers, request refills, make appointments, etc., and for them to have my medical history. My medical summary is a much quicker way to bring new doctors up to speed but they also have access to most of my recent medical history online as well.

Another good topic is how to communicate when you are in the hospital and what are hospitals doing to help those with hearing loss. I am lucky that my husband helps me. Hospitals in general need to be more proactive in educating patients with hearing loss so we know what both the patient and hospital can do to reduce the stress related with not hearing or understanding what is being said.

Ok, it's time to get off my soapbox! We have many, many opportunities to help those with hearing loss maximize their hearing lifestyle!

REPLY
2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 8, 2019
In reply to @bdzwahlen "Hi Rosemary, I noticed that you are a volunteer mentor. Please tell me more about what..." + (show)
@bdzwahlen

Hi Rosemary, I noticed that you are a volunteer mentor. Please tell me more about what you do as a Mentor. Since I retired 5 years ago I repurposed myself to be a Hearlng Well Advocate . I am also an HLAA N-CHATT Trainer. N-CHATT is a Network of Consumer Hearing Assistive Technology Trainers. The HLAA N-CHATT volunteer program is a partnership with Gallaudet University and the American Institutes for Research. It is being implemented under the Gallaudet-led Deaf/Hard of Hearing Technology Rehabilitation Engineering Research Center (RERC), which is supported by a grant from the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).

I help educate the public, friends, family, and speak at conferences to professionals and students of audiology. I never had support in my life and know how difficult it is to get the support you need. I pretty much self-educated myself. I have progressive hearing loss and have used hearing aids for over 40 years. It was only recently that hearing technology has caught up with my hearing needs. I had no support thru my entire education thru college so can really relate to those with hearing loss. I also worked in many challenging environments. I hear normally below 500 Hz with an extreme steep slope loss to 120 db on the left and 110 on the right. I will be having cochlear implant surgery on the left in June with an AB Slim–J which is the most appropriate for preserving low frequency hearing. I will also use the AB Naida Link Bimodal external components.

Back to the topic, Medical Care is very problematic for those with hearing loss. I very much self advocate and encourage others to do as well. Many health professionals mumble, look down, or don't face the patient when speaking. The general medical profession has little education regarding hearing health and hearing loss. I hope that changes soon as it's a major medical issue with many implications if not treated. It's great that many offices now give you a paper copy with appointments and followup instructions. I also ask medical professionals to write information down. I get a copy of all medical tests, MRIs, films, etc. and maintain my own medical records. I also use all the online medial websites to communicate with my care givers, request refills, make appointments, etc., and for them to have my medical history. My medical summary is a much quicker way to bring new doctors up to speed but they also have access to most of my recent medical history online as well.

Another good topic is how to communicate when you are in the hospital and what are hospitals doing to help those with hearing loss. I am lucky that my husband helps me. Hospitals in general need to be more proactive in educating patients with hearing loss so we know what both the patient and hospital can do to reduce the stress related with not hearing or understanding what is being said.

Ok, it's time to get off my soapbox! We have many, many opportunities to help those with hearing loss maximize their hearing lifestyle!

Jump to this post

@bdzwahlen, Please - No apology! I want to extend my thanks and appreciation to you for what you are doing. No one should have to go thru life feeling that they have no support! I think that what you are doing with your retirement is amazing - doctors and patients, and even the general hearing public need continuing education about living with hearing loss.
I live in Danville, Kentucky - Home of the Kentucky School for the Deaf. So I know first hand the barrier that can exist between the hearing and non hearing population.

Yes, I am a volunteer mentor and I am happy to share more about what the Mentor do. I think that the most complete way is to share the Mayo Connect Pages>About Connect: Who, What & Why. I invite you to read about the role of Volunteer Mentors https://connect.mayoclinic.org/page/about-connect/
-You can also scroll thru the Newsfeed where you can read some of our stories. I'm in there, too!
A Passion for Transplant Patients: Meet @rosemarya
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/a-passion-for-transplant-patients-meet-rosemarya-1/

-This is why I became a Mentor -
Meet Rosemary: Transplant Recipient and Mentor
https://connect.mayoclinic.org/page/transplant/newsfeed-post/meet-rosemary-transplant-recipient-and-mentor/

REPLY
Beverly Zwahlen | @bdzwahlen | Apr 8, 2019

Thanks Rosemary for the helpful information and thank you for what you are doing to help others. I find it to be a very rewarding experience. I actually lived in Somerset, Ky from age 7 to 18 and have been in Danville many times. My husband grew up just south of Danville in Ottenheim, on the top of Halls Gap Hill (close to Standford, Ky). It's a small world! I graduated from the University of Ky in 1978 with an Engineering degree and worked for Exxon for 35 years. I live in Upstate SC now, close to the western Carolina border. I helped start the 1st Upstate Hearing Support Group in Greenville, SC in 2015, about a hour from my home. I was lucky to find an Audiologist to partner with and to sponsor our meetings. We have come a long way in a short period of time but have endless opportunities. It's terrific to connect with mentors and advocates with the passion to help others. Beverly

REPLY
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Apr 9, 2019
In reply to @bdzwahlen "Hi Rosemary, I noticed that you are a volunteer mentor. Please tell me more about what..." + (show)
@bdzwahlen

Hi Rosemary, I noticed that you are a volunteer mentor. Please tell me more about what you do as a Mentor. Since I retired 5 years ago I repurposed myself to be a Hearlng Well Advocate . I am also an HLAA N-CHATT Trainer. N-CHATT is a Network of Consumer Hearing Assistive Technology Trainers. The HLAA N-CHATT volunteer program is a partnership with Gallaudet University and the American Institutes for Research. It is being implemented under the Gallaudet-led Deaf/Hard of Hearing Technology Rehabilitation Engineering Research Center (RERC), which is supported by a grant from the U.S. Department of Health and Human Services, National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR).

I help educate the public, friends, family, and speak at conferences to professionals and students of audiology. I never had support in my life and know how difficult it is to get the support you need. I pretty much self-educated myself. I have progressive hearing loss and have used hearing aids for over 40 years. It was only recently that hearing technology has caught up with my hearing needs. I had no support thru my entire education thru college so can really relate to those with hearing loss. I also worked in many challenging environments. I hear normally below 500 Hz with an extreme steep slope loss to 120 db on the left and 110 on the right. I will be having cochlear implant surgery on the left in June with an AB Slim–J which is the most appropriate for preserving low frequency hearing. I will also use the AB Naida Link Bimodal external components.

Back to the topic, Medical Care is very problematic for those with hearing loss. I very much self advocate and encourage others to do as well. Many health professionals mumble, look down, or don't face the patient when speaking. The general medical profession has little education regarding hearing health and hearing loss. I hope that changes soon as it's a major medical issue with many implications if not treated. It's great that many offices now give you a paper copy with appointments and followup instructions. I also ask medical professionals to write information down. I get a copy of all medical tests, MRIs, films, etc. and maintain my own medical records. I also use all the online medial websites to communicate with my care givers, request refills, make appointments, etc., and for them to have my medical history. My medical summary is a much quicker way to bring new doctors up to speed but they also have access to most of my recent medical history online as well.

Another good topic is how to communicate when you are in the hospital and what are hospitals doing to help those with hearing loss. I am lucky that my husband helps me. Hospitals in general need to be more proactive in educating patients with hearing loss so we know what both the patient and hospital can do to reduce the stress related with not hearing or understanding what is being said.

Ok, it's time to get off my soapbox! We have many, many opportunities to help those with hearing loss maximize their hearing lifestyle!

Jump to this post

@bdzwahlen Beverly, I applaud you for learning to advocate for yourself with the hearing disability that you have, and your willingness to share what you've learned with others. So many of us walk alone through our health challenges and have to learn to advocate for ourselves. That is the reward of the effort we make. I hope your upcoming implant surgery makes a big difference in your life. I've been taking my elderly mom for hearing aid appointments recently and she has some profound loss too. I'm so glad you found a purpose in your life from your experience. I kind of feel that way too about my experiences as a surgical patient and that's why I joined Connect.

REPLY
Beverly Zwahlen | @bdzwahlen | Apr 9, 2019

Thanks Jennifer for your kind comments and thank you for being a mentor. I am very excited about my CI surgery and am looking forward to the activation and the brain training process that follows. It will be another terrific journey in my life that I will be able to share with others. It's so much easier to educate and encourage people to take actions when you have life experiences in which they can relate. Beverly

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Apr 9, 2019
In reply to @bdzwahlen "Thanks Jennifer for your kind comments and thank you for being a mentor. I am very..." + (show)
@bdzwahlen

Thanks Jennifer for your kind comments and thank you for being a mentor. I am very excited about my CI surgery and am looking forward to the activation and the brain training process that follows. It will be another terrific journey in my life that I will be able to share with others. It's so much easier to educate and encourage people to take actions when you have life experiences in which they can relate. Beverly

Jump to this post

@bdzwahlen Beverly, I believe that patients have a lot of power over their own healing and recovery. Neither one of us chose our destiny with our health, but we chose to embrace the challenge of the journey and share out earned knowledge and to reach for our best possible outcome. I surprised myself and was profoundly changed by my experience. I'm excited for you. The brain training phase sounds very interesting and you'll learn things about how that works that most of us don't know. I have learned a lot while advocating for my elderly parents with their medical issues and hospitalizations. I can see how much more difficult that would be for a person with a hearing disability. More power to you, Beverly!

REPLY
Beverly Zwahlen | @bdzwahlen | Apr 10, 2019

Hi Jennifer, You are absolutely right. I had many challenging medical issues in my life, that took years to overcome, so hearing loss since I was a child was just another challenge. What's so nice today are the outreach, mentoring and advocacy programs that we did not have when I was a child for many medical and life challenges many people face. For those with hearing loss, we have all this now plus the hearing technology that has significantly advanced in the past 10 years for hearing aids, cochlear implants, and hearing assistive technology. With all the hearing accessories it's so much easier to hear and understand, and stay connected with people. My mother always told me that if I ever felt sorry for myself just think about those that have even bigger challenges. We are all responsible for reaching out to those that can help and "embrace the challenge of the journey" as you say. It's so important to network, share our knowledge and experiences with others, and empower people to advocate for themselves.

REPLY
lioness | @lioness | Apr 23, 2019
In reply to @roch "Great idea to prepare information on how to prepare. I hope you ask some appointment coordinators,..." + (show)
@roch

Great idea to prepare information on how to prepare. I hope you ask some appointment coordinators, nurses and doctors for their input also.

I try to be as prepared for any questions the doctor might ask and have a list of questions for the doctor. The more prepared I am, the more efficient the appointment will be. I would rather have too much information with me then not enough.

Think back to other doctors' appointments, what questions did the nurse or doctor ask. Be prepared to answer those questions again.

I have been a patient of Mayo my entire life, and all my information is online, I still bring the following list to my appointment just in case. Even though information is online, it does take time for a doctor to find. If he wants to look up details, it is nice to have dates of previous tests, etc…

My suggestions:

1. Make sure your appointment is with right specialist. At Mayo the appointment coordinators should be able to help. Just because a friend saw a certain doctor, he/she might not be correct specialist for your condition.
2. Have your referring doctor send all medical records (preferable electronically). In addition, bring a copy with you just in case something gets misplaced. Again, preferable on a disk.
3. In addition, I always have the following with documents with me:
○ List of all medications I take, who prescribed, why I take that medication, how long I have taken that medication.
○ If there are other medications I have taken in recently that I no longer take, it is nice to have that information also. Maybe your previous doctor recommended something and it did not work. You want your new doctor to know this information.
○ Your list should include all prescribed and over the counter medication.
○ You might want to bring all the bottles with you so there is no question about dosages.
○ List of all allergies
○ List of all surgeries, date and location.
○ List of all medical conditions, when diagnosed and are you still being treated for this condition. A specialist is not there to treat all your problems, but something may be related to your current problem.
4. Write down your understanding of current problem and list of symptoms. Be specific.
a. When did symptoms start
b. How are you treating the symptoms
c. Does anything make them worse or better.
d. What tests have been done for current problem, date, location, results
5. Write down your questions related to current problem in order of importance. At end of appointment, look through your list and see if they have been answered.
6. Take notes, the doctor's summary will be available online after your appointment. If he tells you something and you do not know how to spell it, ask him to write it down.

If your appointment is at Mayo, and you use the internet register for the Mayo Portal. It is great reference to double check appointment information, fill out forms, check results and see doctor notes. Even if you fill out form online, also bring information to appointment. And if use a smart phone, download app.

Hope this helps.
Laurie

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@roch Thank you for this information I'm seeing a new Dr May 1so I will get my stuff together 🙂

REPLY
cacoon6 | @cacoon6 | Jul 21, 2019

Hello, I know this is an older post but I would love some feedback. I have been disappointed as of late with my lack of healthcare. I was recently dx with some brain issues which are scary enough. I am a Mom of 4 and worked in the medical field all my life (not an RN). But, have been pretty healthy minus a few surgeries in the past. I started to do my research from evidence based websites with my condition and the last neuro I saw seemed to use that against me by saying "You are educated" I never try to act smarter than the MD because I am not. I just want to get better and feel better. Any advice how to connect with my Mayo appointment ahead of time? It isn't until August? Should I send a fax ahead of time saying who I am? I want to get better and get treated...all I have been given locally and not so locally is, here is pain meds and your headache isn't the cause of your brain issues. I want them to know me and see me and I am spending $ and scared I will leave another appointment disappointed and dismissed...

REPLY
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