Improving the Quality of Your Care
Friday, September 27, 2013 5 Comments
Don’t make your Doctors “guess”
© By Madelyn Griffith-Haynie, CTP, CMC, A.C.T., MCC, SCAC
Foundational Concepts in the Self-advocacy Series
Improving the Quality of Your Care – Part 1 of 2
Complaint vs Feedback
In an earlier article, In Praise of Complainers-Reframing Complaining, I underscored the importance of feedback to getting our needs met — that, without our negative feedback, the rational assumption is that “all is well.”
If that’s not the case, I went on to say, we MUST “complain” if we ever expect more functionality and life satisfaction than we have right now. HOWEVER . . .
HOW we provide feedback – and to whom – makes a difference.
This portion of the Self-advocacy Series will begin to take a look at how to provide effective feedback to your care providers.
Upping the Quality of your Care
(even if it’s pretty good already)
Over my last twenty (plus) years in the ADD/EFD field, I have seen and heard about excellent doctors, mediocre doctors, downright lousy doctors — and everything in between.
Their “ADD/EFD-literacy” has ranged from amazingly well-informed, to virtually ignorant, to badly MISinformed.
(click HERE for The Top Ten Stupid Comments from [supposed] ADD Professionals
for specific examples of & my responses to a few of the worst!)
The bulk of this two-part article has been written to help you improve your relationship with adequate, good and GREAT doctors (AFTER a few tips on how to survive the other kind).
The Good and the Great
In the past twenty years I have been blessed to know more than a few truly excellent medical professionals who are ADD/EFD angels on earth.
Most doctors, ADD/EFD or otherwise, really want to “win” with you, and the majority understand without explanation that your feedback is essential — they can’t make a difference in your care if they don’t know where the problems are.
Most of them welcome appropriately expressed feedback and do their best to respond to it, frequently with changes in your medications protocol.
They also encourage – and respond to – questions from you.
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They turn red on mouseover. Hold before clicking for a window with more info
And THEN there are the others, unfortunately
My clients, students and colleagues – in addition to internet discussion lists – keep me all too aware that Houston, we have a problem.
And yet, they feel qualified to determine that you do NOT have ADD or EFD.
They seem to have no awareness of the reality that, unless they have suffiecient EFD-literacy to make a qualified diagnosis, their “professional advice” is little more than personal opinion from someone who once went through med school.
These ADD-unqualified “professionals” run the gamut, unaware that what they don’t know DOES hurt them.
- It casts aspersions upon their professional reputations
- More to the point, it compromises their quality of care — which directly and adversely affects YOU.
A doctor’s comment posted beneath the Top Ten Stupid Comments article mentioned above puts it this way:
“From my point of view ADHD is a common and
highly co-morbid condition.
No health practitioner should be unaware of it.”
FAR too many times for MY comfort – more common with the “invisible” diagnoses in the mental health field – I have sent clients back to their doctors with specific questions that do not get addressed because of practitioner arrogance — an attitude that might as well be “Whoever went to med school has unilateral expertise, don’t question it — I’m the professional here, not you!”
- That’s strong language, I realize, but that IS what I continue to see much more than makes good sense. “Arrogance” seems to me the most appropriate label
(unless, of course, you’d rather use “ego”)
- Without a bit of coaching, it is an unrealistic expectation that a PATIENT will have the wherewithal to challenge that approach, especially a patient with brand new diagnoses (or seeking one).
- My advice in these cases is always, “FIND A DECENT DOCTOR!” – but that is not always possible, for a number of reasons that I won’t go into here.
Before I move on to explain how to do it appropriately, I’ll ring in with this advice: COMPLAIN!
The meaning of the term “professional” is that they get PAID to provide a service they are supposedly qualified to deliver.
Complain until you get what you’ve paid for — anywhere and everywhere, but especially in your doctor’s office!
- If your practitioners are unaware of something you’ve researched and found to be relatively common, EXPRESS your concern that they’re not aware, and request that they check it out to keep up with the field!
(Write yourself a note to follow up with them, too.)
Meanwhile, print out the information and send it, and/or bring it with you
to your next appointment.
UNTIL we *all* start to push back and insist on quality care, nothing will ever change significantly – we need to Occupy ADD!
- Complain TO your doctor, psychologist or psychiatrist, however, not just on chat-lists or blogs that few of them will ever see, much less read.
- When you complain on chat-lists and blogs, encourage the other complainers to complain TO their doctors as well.
- Don’t stop until you [all] get the open-minded, collaborative care you deserve.
- If you are afraid that your doctor will give you that “This is internet bunk” nonsense, be ready to quote a book title written by a doctor or neuroscientist, look them straight in the eye, set your jaw, and quietly but firmly request that they “stop expressing that inappropriate, unhelpful point of view, and update their information base.”
(AND – don’t say this part aloud! – open their unprofessionally closed minds,
wake up and smell the coffee in the Alphabet City Cafe!)
- Then – like a broken record – REQUEST that they do the necessary research to keep up with post-med school developments in the field they are taking YOUR hard-earned money to work in.
Offer to help with resources because “you want to make it as easy as possible for them to keep up, and you know how busy they are”
Meanwhile, start looking for a competent doctor – the good ones will welcome your feedback and be delighted to be pointed directly to studies and websites to broaden their knowledge base, especially if you make it EASY by bringing them a print-out or (ask first) text or email a link to the information.
IMPORTANT CAVEAT: Remember, ALL doctors are CRAZY/busy, and most want to have time for friends and families too (imagine that!) – so don’t assume they “won’t” simply because they “haven’t.”
Even TOP-Notch ADD/EFD doctors and therapists like Thom Brown, Charles Parker, Ned Hallowell, John Ratey, Patricia Quinn, Kathleen Nadeau, Ari Tuckman, Sari Solden (and others) occasionally run across things they don’t already know, or a presentation they’ve never come across before — and they makes it their business to be among the most globally well-informed Pros in practice.
Approached reasonably, if you can POSSIBLY do it, good doctors, therapists and coaches will respond reasonably. Even if they can’t jump into your documentation immediately, they will certainly put it on their [longer than you would believe] To-Do lists, and will be only mildly annoyed when you kindly nudge!
Expressing Negative Feedback
When everything is hunky-dory, we are rarely inspired to make an appointment with a doctor in the first place.
It’s never a good idea to paste a happy face over your symptoms simply because you don’t want to be thought of as one of those negative complainers.
If we ever expect anything to change for the better, providing that “negative feedback” is essential – but that doesn’t mean we have to do it in a negative manner.
Unfortunately, “negative feedback” is frequently accompanied by extreme frustration that quite often slides its communication over to the inappropriately expressed side of the feedback ledger.
How much of THAT is your doctor likely to really hear and take seriously?
- So communicate the small complaints while they’re still small.
- When we wait too long, putting up with something that isn’t working for us in a misguided attempt to be a nice guy or the perfect patient (or some other unexamined source of our willingness to attempt to “go along to get along” ), we gunney-sack our grievances and displeasures until we are about to explode. Then we usually do.
- When our physical or emotional health is at issue, that’s a really BAD idea.
Think about it from your doctor’s perspective
They see a lot of patients – so, even though they realize intellectually that every patient is different, their expectation of a “normal” interaction with a patient has been set by what they are used to seeing.
They’re rushed, thanks to the unfortunate insistence of managed “care” that they see a certain number of patients, so they don’t have a lot of time to spend listening to long-winded explanations or helping you manage anger and frustration.
You want their attention on what you are saying, not HOW you are saying it. They can’t help but make assumptions that might be untrue if you come across as out of control and unpredictable.
You will stand the best chance of them hearing what you are saying if you state your case with as few words and as little emotional affect as possible.
That means you’ll do best if you walk in with a list and a pencil.
In addition to keeping you emotionally centered and concise, checking off each item as you handle it will do three things for you:
- It will help you make sure you cover everything you meant to, keeping you from spending too much time on one thing, with no time remaining to get to something that might actually be more important;
- It will let the doctor know that you have an agenda for your time together, so s/he will be subconsciously primed to help you get through that darned list so that their entire appointment structure remains on track;
- You won’t be as likely to hear, “We have to stop now” before you finish if it looks like you are nearing completion — since your doctor will be able to see you move down through your list, checking things off.
Having something in your hand to write with for the entire appointment will also remind you to jot down a word or two of their response, to jog your mind once you leave the office. Everybody loves to believe that their words carry weight, and care-providers are no different.
The minute you get home, file that list in a folder before it gets lost “somewhere.” Better yet – insert it into a three-ringed binder where you keep ALL related medical notes and records. Take just a few moments to jot down a few words – right there on the page – to further jog your memory of what went on in this session.
You want to be able to track your progress, don’t you?
For those of us managing life-long conditions, the details all run together in our memory banks faster than we ever believe they will. Practitioner memory about the details of your situation gets fuzzy even faster, so you need to keep a record. Make it a HABIT.
- Make sure you make note of any changes in medication BEFORE you take the prescription to be filled, while you have it before you. Don’t agonize over not being able to clearly read the doctor’s handwriting – guess. Your doctor can translate if it ever becomes necessary – or you might even remember to ask the pharmacist, IF you’ve given the script the attention required to attempt to write down the details.
- My clients find it helpful to link meds changes to a particular problem, down and dirty. For example, “increase stims 5mg to have brain past 3pm,” or whatever language makes sense to you, related to the reason for the change. Then you have a hint to help you track to see how well it’s working.
- Don’t even dream you will recall these details after a meds change or two – trust me on this one. Write it down!
Document, Document, Document!
The time to make your preliminary list is not while you’re sitting in the waiting room. The perception of time pressure will make it much harder to do, even if you’re well aware of the problems you want to discuss and intend to arrive a half an hour early. (Yeah, like that’s likely to happen!)
Start right NOW. Write down a few examples of your struggles or complaints on a preliminary list, each separated by a couple of blank lines. Really. The rest of this article will wait right here until you’ve done it.
Put your list somewhere you will be able to find it quickly and easily – like on your refrigerator or on your bedside table – like, NOW.
Affix something to write with in the same place, because you are going to add to this preliminary list in a number of ways between now and your next appointment.
- Whenever you experience a problem that you haven’t written down, walk directly to your list to quickly add it;
- Whenever you are stopped by a problem that you HAVE written down, walk directly to your list and and make a hash mark in the margin next to the item. Add the day and time underneath.
(“Close” is better than no documentation at all, by the way. If you walk away to find a calendar or a clock, guess how likely you will be to get back to that list?)
NOW, go to your calendar or datebook and make sure you know when your next appointment is scheduled.
- If you have no idea, don’t hunt for that scrap of paper or appointment reminder card, call your doctor’s office and ask — most offices can search by name, so this is no big deal to them.
- Write it down IN your calendar or datebook right then, reserving enough time above it to get there on time, with a 20-minute buffer to give you time to copy your preliminary list in a fashion you can navigate when you are sitting across from the doc.
If they can’t find you in their appointment database, MAKE an appointment, even if it’s not time yet for your meds check. Believe it or not, almost all receptionists can schedule appointments several months in advance! They also can easily search for the date of your last appointment, so you don’t even have to hassle the spacing yourself.
Put it on your calendar or in your datebook WHILE you are on the phone with them.
Preparing for your appointment
Part Two of this article will enumerate and expand upon My Top Ten Tips to Improve the Quality of Your Care, but I want to leave you with a few tips about transcribing your Preliminary List so that it will work as intended, as I give you a bit of a preview of some of what’s coming next.
• Begin and End with the biggest problem
Don’t simply copy your messy list neatly – count hashmarks. The greater the number, the bigger the problem. List that complaint first and last on your nice, neat, take-it-with-you list. You want to make SURE your doctor hears and tracks the problems that trip you up frequently.
Staple the messy list to the back of the neat one. You may need the details in your session.
Not only that, your doctor will be more likely to take your comments seriously if s/he realizes that you have been paying close attention to your functioning for longer than today, rather than reporting the problem of the moment.
Maybe it will even spare you from an additional round of “Let’s give it another month and see how it goes.” A month is a l-o-n-g time in struggling years!
• Give up your “Favorite Patient” Fantasy (and stop trying to Look Good for your doctor)
Your doctors know about the standard struggles, but if you don’t give them the straight skivvy on how things are going with you day-to-day, they can’t be blamed for not understanding the extent of your problems. They can’t address it if they don’t know about it.
Believe it or not, it breaks their hearts when they miss something they might have been able to help you with. Don’t make them play 20 Questions to dig it out of you – they don’t have time. Complain!
• The Feedback Sandwich – focus on the filling, but don’t forget the bread
In addition to brightening the doctor’s day, it will make YOU feel better about listing your complaints if you sandwich them between what’s working better, however tiny the improvement, and some expression of gratitude for your physician’s trained companionship on your journey toward Optimal Functioning.
Nobody likes to feel like an unappreciated functionary, or that nothing they do makes a difference, especially those in the helping professions.
Build the habit of expressing what’s working, along with your appreciation, EVERY session. That alone will inspire your care-providers to work their hardest for you.
• PRACTICE getting through your list in two or three minutes (or less) – aloud!
It may make you feel silly, but actors do it ALL the time. Reading quickly a time or two will prime your brain for staying on track when things slow down to accommodate questions or requests for clarification. You will also be able to HEAR how it might land with your doctor, while you still have time to tweak.
Stay tuned for Part-II for more advocacy tips, tricks and concepts designed to help you improve the quality of your care on your journey toward Optimal Functioning.
As always, if you want notification of new articles in the Self-advocacy Series – or any new posts on this blog – give your email address to the nice form on the top of the skinny column to the right. (You only have to do this once, so if you’ve already asked for notification about a prior series, you’re covered for this one too) STRICT No Spam Policy
IN ANY CASE, stay tuned.
There’s a lot to know, a lot here already, and a lot more to come – in this Series and in others.
Get it here while it’s still free for the taking.
Want to work directly with me? If you’d like some one-on-one (couples or group) coaching help with anything that came up while you were reading this Series, click HERE for Brain-based Coaching with mgh, with a contact form at its end, or click the E-me link on the menubar at the top of every page. Fill out the form, submit, and an email SOS is on its way to me; we’ll schedule a call to talk about what you need. I’ll get back to you ASAP (accent on the “P”ossible!)
Related articles right here on ADDandSoMuchMore.com
(in case you missed them above)
- In Praise of Complainers-Reframing Complaining
- My Top Ten Tips to Improve the Quality of Your Care – Part 2 of 2
- Forgetting and Remembering
- The Top Ten Stupid Comments from [supposed] ADD Professionals
- 10 Questions to Ask to find a GRRRRreat! ADD Doc
- Top Ten Questions about ADD meds
- Occupy ADD!
- ABOUT Alphabet Disorders
- Alphabet Soup
- TYPES of Attentional Deficits
- ADD Comorbidities
- What ARE Executive Functions?
Other Related Articles on this Site
- Sis Boom Bah!
- Differential Diagnosis – Part 2
- Transformational Rant
- I Have a Dream (Aspiring to Optimal Functioning)
- RSA Animate – Changing Education Paradigms INDEED!
Related articles ’round the net
- Can I Get My Medication Well Done? (ADD-doc Oren Mason)
- Compatability matters: NaviGo Health puts an online dating-style twist on physician searching (medcitynews.com)
- What scares me about Modern medicine (omblognz.wordpress.com)
- Patient Advocacy services for difficult communicating with Doctors (auspsychiatry.wordpress.com)
- Obama signs Rosa’s Law -a perfect example of citizen advocacy
- What is meaningful patient engagement? (vectorblog.org)
- To Second Opinion or Not, what is the etiquitte? (ask.metafilter.com)
- Mommy Doctor (lifeinbitznpieces.wordpress.com)
- 7 Facts Your Doctor Won’t Tell You (bargaineering.com)
- In the Doctor’s Office, a Neglected Resource (newoldage.blogs.nytimes.com)
- Highmark offering path for doctors to see fewer patients, earn more money (pennlive.com)
BY THE WAY: Since ADDandSoMuchMore.com is an Evergreen site, I revisit all my content periodically to update links — when you link back, like, follow or comment, you STAY on the page. When you do not, you run a high risk of getting replaced by a site with a more generous come-from.