We've all experienced it: the doctor who won't listen to the patient. It's not limited to rare disorders like XLH, but it becomes particularly challenging with conditions where there isn't a lot of scientific literature or even consensus, so you can say, "Look, you're wrong. It says so right here."
Sometimes the answer is to fire the doctor and find a new one, but that's not always an option. There may not be another specialist within a reasonable commute radius, or you may just be too beaten down from your health issues that you don't have the energy to fight the inter-personal battle.
So, what else can you do? Doctors aren't necessarily trained on how to talk to patients, so you may need to teach yourself how to talk to them, to increase the chance of them listening to you. Global Genes has a webinar on the topic here:
https://globalgenes.org/rare-webinar-communicate-with-healthcare/
You might also find their toolkit on a "care notebook" to be useful. Having dates and lab results and other facts right at your fingertips can make your communication effective. Download the tookit here: https://globalgenes.org/toolkits/building-a-care-notebook/carenotebook/
In addition to the sections and materials recommended by Global Genes, consider writing down concise answers for some common questions so you can refer to them as needed and don't get caught tongue-tied when asked. Start with a simple explanation for what XLH is (e.g., a genetic, metabolic, phosphate-wasting disorder that affects bone, teeth and muscle), which is particularly useful when you're seeing a doctor for reasons other than your XLH treatment, like a routine physical. A list of your main XLH-related symptoms (e.g., bone pain, arthritis due to misaligned joints, calcifications, spinal issues, fatigue) can be useful whether you're seeing a specialist or your primary care provider. When you have a lot of issues, it helps the doctor to know which ones are the biggest problems for you. And finally, for a specific appointment, try to identify ahead of time the one particular symptom you're looking to improve (e.g., pain management, reduction in fatigue, increased mobility, improved range of motion), rather than presenting with a whole litany of problems, which can be almost as overwhelming for the doctor as it is for you!
To get your notebook started, consider downloading a copy of each of the Network's brochures to include for easy reference. You can find the main brochure here: http://xlhnetwork.org/about-us/xlh-network-brochure/
and the dental ones here: http://xlhnetwork.org/what-is-xlh/dental-flyers/
There's also a wealth of information at the forum that you can print for your notebook, including research citations you may wish to share with your doctor (or study yourself before talking to your doctor). You can find them in this thread (after you log in): http://vps.xlhnetwork.org/~xlhforum/forum/index.php?board=32.0
Showing posts with label dr/patient relations. Show all posts
Showing posts with label dr/patient relations. Show all posts
Wednesday, October 25, 2017
Wednesday, September 7, 2016
When to see a doctor
Too often, rare-disorder patients stop seeking treatment, because they're overwhelmed with all the medical appointments and they've come to believe that nothing can be done about their condition.
While it's understandable, it's also risky. Many XLHers have reported not knowing they had a broken bone for weeks or even months after the injury, because the pain didn't feel significantly different from the routine bone pain they'd experienced without having any broken bones.
Once in the habit of ignoring bone pain as just something to live with, it can be easy to ignore pain in other parts of the body. Again, we've heard many stories of XLHers not realizing they had a serious medical condition, because they were used to living with pain and waited longer than they should have before seeking medical treatment.
For most people, it's a fairly simple formula for deciding whether to go to the doctor: if they hurt, they seek treatment. For someone who hurts all the time, it's a more complicated decision, with a lot of trial and error and wondering if the right decision has been made.
For some suggestions that might make the decision a little easier (but not completely easy!), check out this guide from Psychology Today online.
While it's understandable, it's also risky. Many XLHers have reported not knowing they had a broken bone for weeks or even months after the injury, because the pain didn't feel significantly different from the routine bone pain they'd experienced without having any broken bones.
Once in the habit of ignoring bone pain as just something to live with, it can be easy to ignore pain in other parts of the body. Again, we've heard many stories of XLHers not realizing they had a serious medical condition, because they were used to living with pain and waited longer than they should have before seeking medical treatment.
For most people, it's a fairly simple formula for deciding whether to go to the doctor: if they hurt, they seek treatment. For someone who hurts all the time, it's a more complicated decision, with a lot of trial and error and wondering if the right decision has been made.
For some suggestions that might make the decision a little easier (but not completely easy!), check out this guide from Psychology Today online.
Wednesday, August 24, 2016
Working with your health care team
Global Genes (globalgenes.org) has a really outstanding webinar (video) at its site with suggestions for working with your health care team about your (or your child's) rare disease.
Three particularly interesting points were:
1) it's useful to write out a brief narrative of what the disorder is and what your experience with it is, and bring it with you to medical appointments to make it easy to tell new health care providers the basic information without forgetting anything important;
2) for children who are hospitalized, there are often "child life" professionals who can help with things that aren't exactly medical treatment, but that make the experience better, so be sure to ask for those services; and
3) for both adults and children who are undergoing a wide range of treatment and have had a case manager assigned at the insurance agency, consider that person part of your medical care team and keep him/her in the loop.
You can watch the whole thing here: https://globalgenes.org/rare-
Three particularly interesting points were:
1) it's useful to write out a brief narrative of what the disorder is and what your experience with it is, and bring it with you to medical appointments to make it easy to tell new health care providers the basic information without forgetting anything important;
2) for children who are hospitalized, there are often "child life" professionals who can help with things that aren't exactly medical treatment, but that make the experience better, so be sure to ask for those services; and
3) for both adults and children who are undergoing a wide range of treatment and have had a case manager assigned at the insurance agency, consider that person part of your medical care team and keep him/her in the loop.
You can watch the whole thing here: https://globalgenes.org/rare-
Tuesday, March 22, 2016
Educating the doctors
One of the challenges that patients with rare conditions face is dealing with doctors who are both unfamiliar with the condition (understandable) and dismissive of any attempts by the patient to explain the condition (not so understandable).
Usually, there isn't anything we can do about it except move on to another doctor. But what if you could meet a doctor in training, someone who isn't set in his or her ways, and who's open to learning about your challenges?
You can! Global Genes has a contest for first and second year medical students that involves getting to know a rare family and writing an essay on the experience. You can read more about it here: http://www.globalgenes.org/coxprize
If you're interested in being the rare family for one of those students, you can sign up here: https://globalgenes.org/coxprize_familyrequest There, you'll find a list of locations where they're searching for a family to match with a student. If your location isn't listed, check back, because the list is updated weekly.
Usually, there isn't anything we can do about it except move on to another doctor. But what if you could meet a doctor in training, someone who isn't set in his or her ways, and who's open to learning about your challenges?
You can! Global Genes has a contest for first and second year medical students that involves getting to know a rare family and writing an essay on the experience. You can read more about it here: http://www.globalgenes.org/coxprize
If you're interested in being the rare family for one of those students, you can sign up here: https://globalgenes.org/coxprize_familyrequest There, you'll find a list of locations where they're searching for a family to match with a student. If your location isn't listed, check back, because the list is updated weekly.
Wednesday, February 17, 2016
Finding a specialist
It isn't always easy to find a health care provider for treatment of a rare disorder, and yet, it's absolutely critical for these patients to see a specialist who has the most up-to-date information on appropriate treatment and the potential side effects, and who also has access to information on clinical trials.
So, how do you find such a specialist? The first step is to ask the XLH Network community. If you're a member of the Network, you have access to our database of health care providers who have been recommended by other patients. You can find a link to join at our website: XLHNetwork.org
If our database doesn't have a specialist who's local to you, then you have two options: 1) you can travel to a city that has well-known experts—highly, highly recommended for pediatric treatment—which our members will tell you about at our online community, or 2) look for someone local who has the necessary expertise.
If you're going to find your own local expert, your best bet is usually at a teaching hospital. For an online search tool for teaching hospitals in the United States, check out Health Guide USA here: http://www.healthguideusa.org/teaching_hospitals.htm
Once you've located the teaching hospital in your area, you still need to find an individual doctor. Most hospitals today have websites where you can search for doctors based on their medical specialty. For the day-to-day treatment of XLH (as opposed to something like surgical intervention or pain management), the relevant specialty is endocrinology. That specialty covers a broad range of conditions, though, so look for someone who mentions an interest in "bone metabolism."
It would be nice if you could interview the doctor before your first appointment, but that's not generally possible in the United States. Still, your work is not finished until you've actually met the specialist and confirmed that he/she is right for you. Remember that you don't have to keep the first doctor you see, so be prepared to ask a few questions about his/her expertise during the first appointment. The doctor obviously can't share any personal information about his/her patients but should be able to say how many XLH patients he's treated and what other relevant experience he has with bone metabolism issues.
It can take some time to find the right doctor, but, particularly for a rare condition, where improper treatment can be extremely harmful, it's worth the extra effort to work with someone who is familiar with the disorder and its treatment.
So, how do you find such a specialist? The first step is to ask the XLH Network community. If you're a member of the Network, you have access to our database of health care providers who have been recommended by other patients. You can find a link to join at our website: XLHNetwork.org
If our database doesn't have a specialist who's local to you, then you have two options: 1) you can travel to a city that has well-known experts—highly, highly recommended for pediatric treatment—which our members will tell you about at our online community, or 2) look for someone local who has the necessary expertise.
If you're going to find your own local expert, your best bet is usually at a teaching hospital. For an online search tool for teaching hospitals in the United States, check out Health Guide USA here: http://www.healthguideusa.org/teaching_hospitals.htm
Once you've located the teaching hospital in your area, you still need to find an individual doctor. Most hospitals today have websites where you can search for doctors based on their medical specialty. For the day-to-day treatment of XLH (as opposed to something like surgical intervention or pain management), the relevant specialty is endocrinology. That specialty covers a broad range of conditions, though, so look for someone who mentions an interest in "bone metabolism."
It would be nice if you could interview the doctor before your first appointment, but that's not generally possible in the United States. Still, your work is not finished until you've actually met the specialist and confirmed that he/she is right for you. Remember that you don't have to keep the first doctor you see, so be prepared to ask a few questions about his/her expertise during the first appointment. The doctor obviously can't share any personal information about his/her patients but should be able to say how many XLH patients he's treated and what other relevant experience he has with bone metabolism issues.
It can take some time to find the right doctor, but, particularly for a rare condition, where improper treatment can be extremely harmful, it's worth the extra effort to work with someone who is familiar with the disorder and its treatment.
Wednesday, April 9, 2014
Expertise and convenience
Joyce Inman is today's guest blogger. She's the secretary of the XLH Network, Inc., and the parent of a spontaneous XLHer who was diagnosed, as is typical, between her second and third birthdays.
When our daughter was first diagnosed with a condition that was rare and new to me, we dove into the massive internet searches typical of our Web MD generation. After all the research and discussions with members of the XLH Network, we decided to travel to see a well-known pediatric endocrinologist who specializes in XLH.
I am certain our new doctor must have thought we were slightly insane as we began the process of traveling halfway across the country three times a year to see him; however, we were confident we were receiving the best care possible. Still, at every appointment he suggested that we get a doctor closer to home. He said he would be happy to work with any doctor we chose, but that eventually we were going to want and need a doctor we could see without getting on a plane.
He was right. The trips for medical care began to take their toll, and my daughter was beginning to resent this additional aspect of her treatment. So, the search for a doctor close to home began again. I started by doing internet searches for pediatric endocrinologists at five different university medical centers within three-and-a-half hours driving distance. At this point, I knew what we wanted in a doctor, and I understood enough about XLH to know what kind of doctor we didn’t want.
During the first search, I'd had no idea that knowing these needs and how to express them would be so valuable. During the early days after diagnosis, I did not know that I needed to look for a doctor with experience treating XLH and who had an active research agenda that would better ensure they were up-to-date in terms of XLH research and treatment. I didn’t know that I wanted a doctor who would be more conservative with the care and would exhaust medicinal therapies before even considering surgery as an option. And because that was the first time I needed a specialist for my child, I did not know what type of doctor personae I needed for our family to feel comfortable with this transition.
During the second search, however, I knew what we needed. I pored over doctor profiles on university websites looking for an endocrinologist who listed interests in endocrine disorders other than diabetes. Eventually, I found a doctor whose research interests included “metabolic bone disorders.” I was cautiously optimistic, but knew that doctors' offices associated with universities tend to be overrun with patients and difficult to get on the phone. So, I emailed the office about our goals in which I explained the following:
Two days later we received an email from the local specialist who is now our “home-base” doctor, and she told us she would be happy to meet with us. Our current medical checkups involve seeing our new doctor twice during the school year and a visit to our XLH specialist every summer.
I am posting our story in hopes that it will help provide others with ideas about how to get the best care possible for their children. I am conscious of the fact that many people do not have the option of seeking out medical care that is located outside their city of residence or their insurance network. However, I am also confident that knowing what you need in a doctor, combined with thoughtful correspondence, can lead to strong and rewarding doctor/patient relationships.
My daughter is now seven years old, and we have been working for five years to get to the point that we are now. It has not been easy financially, physically, or emotionally, but it has certainly been worth the peace of mind that comes with finding two doctors who I am confident care greatly for my child and her wellbeing.
When our daughter was first diagnosed with a condition that was rare and new to me, we dove into the massive internet searches typical of our Web MD generation. After all the research and discussions with members of the XLH Network, we decided to travel to see a well-known pediatric endocrinologist who specializes in XLH.
I am certain our new doctor must have thought we were slightly insane as we began the process of traveling halfway across the country three times a year to see him; however, we were confident we were receiving the best care possible. Still, at every appointment he suggested that we get a doctor closer to home. He said he would be happy to work with any doctor we chose, but that eventually we were going to want and need a doctor we could see without getting on a plane.
He was right. The trips for medical care began to take their toll, and my daughter was beginning to resent this additional aspect of her treatment. So, the search for a doctor close to home began again. I started by doing internet searches for pediatric endocrinologists at five different university medical centers within three-and-a-half hours driving distance. At this point, I knew what we wanted in a doctor, and I understood enough about XLH to know what kind of doctor we didn’t want.
During the first search, I'd had no idea that knowing these needs and how to express them would be so valuable. During the early days after diagnosis, I did not know that I needed to look for a doctor with experience treating XLH and who had an active research agenda that would better ensure they were up-to-date in terms of XLH research and treatment. I didn’t know that I wanted a doctor who would be more conservative with the care and would exhaust medicinal therapies before even considering surgery as an option. And because that was the first time I needed a specialist for my child, I did not know what type of doctor personae I needed for our family to feel comfortable with this transition.
During the second search, however, I knew what we needed. I pored over doctor profiles on university websites looking for an endocrinologist who listed interests in endocrine disorders other than diabetes. Eventually, I found a doctor whose research interests included “metabolic bone disorders.” I was cautiously optimistic, but knew that doctors' offices associated with universities tend to be overrun with patients and difficult to get on the phone. So, I emailed the office about our goals in which I explained the following:
- My daughter’s medical history and our hopes to find a doctor closer to home
- Our desire to find a doctor willing to work in conjunction with our XLH specialist
- My hope to have an open relationship with our new doctor in which lab results would be forwarded to me and to our XLH specialist
- A statement of excitement to have potentially found someone whose research interests suggested an interest in XLH
Two days later we received an email from the local specialist who is now our “home-base” doctor, and she told us she would be happy to meet with us. Our current medical checkups involve seeing our new doctor twice during the school year and a visit to our XLH specialist every summer.
I am posting our story in hopes that it will help provide others with ideas about how to get the best care possible for their children. I am conscious of the fact that many people do not have the option of seeking out medical care that is located outside their city of residence or their insurance network. However, I am also confident that knowing what you need in a doctor, combined with thoughtful correspondence, can lead to strong and rewarding doctor/patient relationships.
My daughter is now seven years old, and we have been working for five years to get to the point that we are now. It has not been easy financially, physically, or emotionally, but it has certainly been worth the peace of mind that comes with finding two doctors who I am confident care greatly for my child and her wellbeing.
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