A common theme in many of the posts here is that doctors and medical professionals aren't listening. As a result people in this community suffer unnecessarily. What have you found or what advice would you give that has ended in positive speedy results? How do you get them to listen and respond accordingly? I have a fabulous PCP. She hears me... She tells me she hears me... And she responds...and if it doesn't work she tries something else until it does. She also isn't afraid to send me out of the area if needed. She has sent me to Cleveland Clinic a couple times which resulted in answers and treatment. SO HOW DO YOU GET THE DOCTORS TO RESPOND?
Well first off for me i pray before I go and even before I make first contact. Once that's is done I try to have much Information as possible with me when I go in for my appointment. When I went in for my first visitwith my rheumatologist inhad all my records and reports from other doctors and when the nurse and doctor saw this they were very impressed and happy. It made there job easier.
That wasnt supposed to post! I find explaining why you want or dont want something is helpful in getting them to actually hear you. Not shutting down or getting angry when they say no also helps. People don't respond well to angry people. I keep my doctor informed of what my massage therapist, physical therapist and naturopath have said and are doing with me. I keep records of food and exercise so that i can show the doctor if exercise gets brought up. I have an activity tracker that i use mostly for sleep tracking. And i answer questions honestly. When he asks how i am i tell him all of it, followed by the statement that this is my daily life so i guess im ok. Although i did a look and a lecture after waiting almost 3 weeks to make an appointment after i sprained my shoulder. But in my defense everything but my shoulder hurt for over 2 weeks after it went pop.
It took me a year and a half to finally get my doc to believe me that something is very wrong. What did for me was my finger tuning blue in front of him. Now he finally believes that something auto immune is going on. I've been trying to tell him all this time. This is also after 2 Rheumies blew me off. So I've now been diagnosed with Raynaud's for starters. I'm being referred to an internist and an opthalmologist. I suspect I have lupus and sjogrens.
I also spent a year going to a pain clinic. That was crappy. I also had a positive ANA test with a speckled pattern that they kept telling me was false. I kept telling them I don't think so. All that to say it seems my doc needed a visual. I asked the doc over 6 months ago if I could see an internist. He said no. Now he's suggesting I go. Here's the internist believes me. Be persistent. Don't give up. You know you're body better than they do.
I recomend taking a friend or relative as a "patient advocate"... I described my symptoms to my dr the other day and she didn't believe me or listen until my mom repeated what I said.
Personally I keep my records of notes as best as my body will allow... This will also help for my disability case I am told.
With that said, my best doctors are my pcp and my gastro.... Gastro is thorough, kind, talks to me like a person, genuinely felt bad she couldn't find any treatment for me.
I find that all my doctors are busy, and that hurts how well they treat me sometimes. I wish I could see a doctor for an hour long appointment instead of a 15 minute follow up once a year that focuses on only two symptoms. I have over 100 symptoms, 25 of which are noticeably severe and life altering.
I think about how my care isn't great (so thanks for this thread!)... But then I remember when I'm gonna see the social security docs I am gonna probably have a five minute appointment with a doctor that doesn't believe in invisible illnesses at all. OTL
I have found 1 cut out small talk a nice hi how are you then get to business. 2. being specific on one issue per appointment 2. Have good description of issue not just a blanket descriprion (i make a list or I forget some things) 3. having a list of questions on that specific issue. 4. This one became huge for me.... If you take someone with you, I take my husband, ask them to refrain from talking during the appointment until you are done. While they have good intentions you need to get your list done then time permitting they can ask questions.
I take advantage of that 15 minutes doctor window I get. I have also drawn with marker on my body to show where pain starts and how it travels. If I have multiple issues i will make a few appointments and at the end of the first i let my doctor know i have some other issues to discuss and have made some other appointments.
Shammagren.. That's sounds like an awesome plan but maybe I'm just to impatient but it seems like making multiple appointments and dealing with one issue at a time is expensive for one because of copays and it just seems that it will take forever to get any real relief ..I'm nkt coming down on your technique I'm just stating that it would make me nuts doing things so drawn out. But keep in mind I'm still new to all this so clearly I'm no expert.
Newfibrogirl girl it has taken me over 10 years to realize I needed to do this. When you spread the doctor to thin with to much they can't focus. I say it is like trying to clean your entire house in 15 minutes.
Maybe if you just try one extra appointment to deal with your worst issue and see if it works for you. I know when I went in and focused on my worst issue it started a chain reaction of xrays, mris, specialists and so on but within a month I finally had some answers.
I try to keep to 1 or 2 appointments a month unless something comes up like I have had pnemonia so that has taken more visits and I go for a second xray next week.....joy
I think about what I want and need to know and I make a list and we go thru the list item by item. I always make sure I am prepared with research and information. I have had doctors that didn't seem to care so I would see the patient advocate and request a new doctor, it works.
Shammagren, this is what I do wish my doctor, only talk about 1 problem per appointment in general. Here in th UK our appointments are 10 mins standard so we are advised to stick to 1 issue, if need be, book a double appointment, I can do all of my appointments online so can make sure I see my actual GP each time as having to go through everything with a different doctor,when you have chronic issues, can take a whole appointment in itself. I'm on patient programme at my Doctors for people with ongoing complex conditions, where I have a multidisciplinary team of professionals, who basically try to keep you from being admitted to hospital,as people on this programme tend to be more likely to have hospital admissions. I have a specialist community Matron who coordinates everything, my GP, OT, Physios, phycologist,social worker,continence nurse...etc. It also means it cuts down my visits to the GP, as each week they have a meeting about me (basically like a ward round but in the community)
Jahmac the differences in medical treatment in different countries is something I never thought of until I joined this. Does the patient program work well? I have all my specialists and other doctors send everything to my primary doctor so all my issues are known. Since the healthcare changes "obamacare" here it is harder to get into doctors as the medical system is over full with patients.
For me this particular programme works well for me, I still end up in hospital but I have a defence line of professionals who try their hardest to keep. This from happening. All my Care, equipment,referrals,care plans etc are taken care of by my team. Because I'm quadriplegic it's inevitable that I do have visits to hospital, but they are fewer than they would be if I wasn't on the programme. And they all have access to all my records so all know up to date information.
I never thought of one issue per appointment. That wouldn't work for me. We go over everything going on because the next doctor visit may not be for 3 to 6 months. If there is a medication or something my PCP wants to follow up on the next visit could be sooner. All information from my other doctors are sent to my PCP.
I have a garmin vivofit but i think most of them track sleep. Of course it tracks movement so if you are just laying there it thinks you are asleep. And it's not perfect but in terms of a general idea it works great
Lists, photos, notes are all vital. It wasn't until I had an xray I could put on my phone and show my Medicare doc and phys therapist. They could see for themselves what was bork, and that it wasn't a random visit. That got the ball rolling there.. I did a LOT of research on my hip pain, and actually had a diagnosis so I could direct the VA towards finding the same thing I had discovered - a tear inside the hip capsule! They didn't want to solve it, just manage it, so I went to my Medicare doctor, who referred me to an amazing surgeon who absolutely fixed the problem in one 4 hour surgery! I don't know what will happen with my back...
But using this app can help also. You can show your doctor your daily pain levels, type of pain, and other things. Write a list using the app in chrono order as much as possible, and show them the app as well. It sucks to not be believed. But you have the right to request a different doctor, and if you keep good records, you can show that the dr was ignoring you and your symptoms. Not to get doc in trouble, but we MUST be our own advocates.