I have two young kids with PDD-NOS and ADHD. Can I tell you how many pediatricians missed the diagnoses? Because they’re bright and highly verbal and not retarded, and because they make great eye contact? I had a consultation with one pediatrician about my youngest when he was about 20 months old and was told to spank him and that he was having problems due to my failure to discipline him properly. I went to another pediatrician, and begged her for some help, because my then 3 year old child was behaving in ways that were life-threatening. “I don’t believe in medicating children that young,” she simpered. Hmm. Well. On the way back from the major teaching hospital three months later, where my kid was handily diagnosed, he wriggled out of his properly-fastened five-point safety restraint (an engineer watched in awe as he did this once, to see how he did it), disabled the child safety lock, and opened the door to the minivan while it was in motion on a four-lane divided highway at 55-miles per hour. He’s the kid you read about who wanders out of the house and turns up on the bottom of a pond, or jumps off the roof. Our house was locked down like Ft. Knox. All I got from pediatricians were stares (gosh why doesn’t she discipline those children!) and shrugs (I’m sorry, I don’t know what the problem is). Except for the pediatrician who saw my oldest when he’d just turned two and informed me that his verbal skills were “quite poor for a four-year-old.” Yeah, lady, look at his chart. He’s two. “Yeah, and you should see how poor his driving abilities are for a twenty-year-old, especially getting that five-speed out of that uphill parking space on really steep grades. What’s your point?”

Thank heaven I found a pediatric psychiatrist who isn’t afraid to medicate three-year-olds. My littlest is on three drugs (Adderall XR, clonidine and 0.25 mg of Risperdal). At the age of 20 months, he had the speech of a 13-month-old. But the medication changed his life. Because the kid can pay attention, he can learn. Because he can learn, he can develop. Because he can develop, he’s learned new strategies. Overnight he became a different kid. He immediately began seeking out interactions with peers. He became connected. He started using pronouns and prepositions. He stopped running away. He could go to petting zoos, swimming pools, parks, restaurants. His whole life improved. He’s bright, and now he has a chance to actually have relationships and to learn.

My older one was fortuitously diagnosed because the staff at the hospital that diagnosed my youngest one suggested I get my older one evaluated for the same thing. And all this time the spank-him pediatrician was telling me, “No, he can’t know his letters, shapes and colors at 27 months…not the way he’s behaving.”

He’s on medication, too, and is Gifted and LD, which makes it really fun.

But the point is, my experience of pediatricians is that when it comes to developmental issues in children, even though they are out of their depth, they refuse to listen to parents or to refer the parents to the right folks. Look, guys, I promise to vaccinate my autism-spectrum kids (and I do, right down to the flu shots) if you promise not to try to diagnose developmental disorders.

nd: Do you have your own blog?

Would dearly love to find a physician like you describe in “not so tedious example #3″ … unfortunately, all of our local docs either run offices which are “A Department of [Yadda Yadda] Hospital” or in specialty care. There are 4 hospitals locally … 6 in a 25 mile radius … and I’m not near a large city. This is a highly medical area.

There are only two physician names which come up repeatedly as being “well loved” by an eclectic group of patients, but they’re so busy that they’re impossible to see unless you’ve already got a foot in the door.

… For the nonce, I’ll just “make do” with my nephrologist, and hope that nothing else comes up. 0.o

Thank you for the time you’ve taken in answering the comments I’ve left.

(For example, I just recieved notice that one of the
nations large pharmacy benefits plan as of
Jan 1 will no longer have lipitor on prefferred
status, but they will place crestor on preferred
status. If Patients are kept on lipitor they will be forced to pay an extra 25 dollars/month. So our staff
will be receiving about 100 phone calls by patients
who have been thus far doing great on lipitor but
must be changed to crestor. As the monitoring of crestor
( a new drug) is more intense we will also have to
order new sets of labs on these patients at more frequent
intervals for the first year. thus we will have 100 phone
calls from patients each which will take @ 5 minutes,
we will have to mail out lab slips to 100 people, review
additional 100 lab results, call back or write
to the 100 patients to inform them of the results.

so I guess about 600 minutes ( 10 hours) will go to
just this one single drug changed

Another formulary plan TODAY plan announced that they are dropping pravachol
as preffered but will now have lipitor preffered. so there goes another
10 hours.

I anticipate probably another 10 drugs to switch which could take about total 75 hours of time from me and my nurse this year. None of this work on our part is reimbursed, not one medicsl benefit is provided to the patient. The following year many of the new preferred drugs will be replaced by other drugs.

which means patients suffer due to to profit motive
of the pharmaceutical benefit plan, who is hired
by the health insurance company.

this is just but one SMALL example of the things
that must be done by a primary care office that
interfere with personalized care.

why does one plan favor lipitor, another favor pravachol, another favor crestor? why do they change from year to year. ?

Pharm benefit companies make profits.

tedious and sad example #2

We have a national crisis in Doc’s training in Obstetrics , the liability is too great. 10 years ago , almost 1000 med students chose OB/GYN /year , now for the past several year the numbers are far far less only 770 students chose OB/GYN

not so tedious example#3
I have been reading about a new breed of practices
that radically departs for the 3.5 employees/doc office
where multiple insurance companies are accepted.
Some doc’s are running solo offices ( no fulltime employees), these docs see only about
12 people/day, typically only deal with hassle
free insurance plans and self pay patients.
from my reading office visits are Much longer
and more perosnalized then the traditional office
setting. These offices are not in large buildings
and office just rent out unused space from other
businesses or health care providers. They do
not advertise ( they don’t need to as word of mouth
is all they need)

http://www.aafp.org/fpm/20020200/29goin.html

I have random thoughts, probably laughable but you asked for it.

On national level:
As long as patients and physicians
are managed by the insurance beuracracy I think only organized political pressure will work. Industry groups, including health insurance companies spend countless millions per year to influence legislation. Lobbyists should be banned. Support all attempts to restrict access of lobbyists to your legislators.

There is little the patient or primary
care doc can do unless patients and docs band together.

Health care ,when such a huge source of profit by insurers, likely will linger in its current state.

On a state/county or community level:
There may be practical steps that might reduce the barriers to personalized health care. But without
clear understanding of the specific barriers nothing
will be effective. to gain understanding

1.Form discussion groups (kind of like here)

patients and docs discuss and work together to understand the “system imposed” barriers to providing personalized care.

Once these systemic barriers are articulated, then
create a grass route local organization in your
to problem solve each of these barriers and find
ways to overcome them. If these issues are fixed
both patient and doctor win.

see tedious example #1 on next post for a tedious
example of how insurance companies force doc’s to
deal with issues (which save their plans money) but diminish time with patients

also, see tedious but sad example #2

2. attend as many pertinent local health seminars
or self help groups as you reasonably can. Often
times you can gather and share lots of information
that will help you improve your care. Network
with healtcare providers (Nurses, doc’s, therapists,
etc…)

On a personal level

1. Find a doctor who practices in a unique way.

see not so tedius example #3 on the next post

2. If you like your doctor and don’t want to lose her/him,
support the relationship. do not assume the doc feels appreciated, a simple card will do. If you wan’t to play the guilt angle, send a religious card. (works for me)

you then ask if a medical revolution will occur.

I think an economic revolution (crisis) will occur first.

The annual U.S trade defecit and budget is now almost one TRILLION dollars/year. We cannot pay these debts off, so we are headed for an economic meltdown. Already we see huge layoffs by our major manufacturers and high paying jobs ( GM, Ford, Compaq ) . High paying jobs have decent health insurance. low paying jobs have lousy health care insurance. As our bills pile up, we need to down size our financial and medical expectations. ( The number of uninsured is increasing by 1 million/year.)

As the uninsured go up, more patients will pay cash for their office visits and then the doc will revert to a simpler kind of care. Fees are posted on the wall. Patient pays , doctor unbothered by insurance hassles will pull up a chair, listen to you carefully, examine you carefully, order less tests and think more carefully to help you. and then poof, medical revolution.

ignore below if you are tired of reading.

There is a movie called Brother Sun Sister Moon, where Saint Francis sings a slow hymm while attending to the wounds of lepers ( Mycobacterium skin disease)

if you want your dream to be…
build it slow and surely

small beginnings greater ends
heartfelt work grows purely

if you want to live life free
take your time
go slowly
do few things but do them well
simple joys are holy

day by day
stone by stone
build your secret slowly
day by day you’ll grow too
you’ll know heavens glory

now that is medicine.

… do you see a solution from your own perspective?

Is there a way that we – all of us, physicians and patients – could begin to affect some sort of change? What sort of “medical revolution” would restore sanity and balance in what is becoming as large a problem as our massively out-of-control government?

Thank you nd for the wonderful and thought provoking discussion. I had a much better reply made up last weekend, but then was blocked on the site as a spammer, and it must be lost in cyberspace.

the system is the massive insurance and regulatory beuracracy that forces the physician to make actions that do not lead to improved patient care but rather fullfill the mandates of the beuracracy.

This ” system” is not apparent to the patient, so the patient concludes that it is the physicians shortcoming that fails them.

From a generalist physician’s viewpoint, the “system” causes such enourmous frustration and time demands that the patient is given less time than they deserve.

Today for example I had to answer about 7 faxes.

Several were warnings that a formerly preferred drug for my patients is now requiring pre-authorization. (Pre authorization is generally another separate one page document that demands very detailed information as to why the patient must be on the old medicine, and a detailed explanation by me as to why the new prefferred drug is not suitable for the patient.)

while I spend about 10 minutes on these stupid forms, I cannot simultaneously attend to the patient in the room.

another form was a revised form , demanding proof that a 89 year old paient of mine needed oxygen. She has been on oxygen for 2 years and every 6 months I must re-certify that she needs it. again, every minute I spend on forms. I must spend corresponding less time for patients.

all of these faxes were for patients who have not been in the office for at least one month. some days I receive 5 faxes others over 10.

these examples are a small fraction of the mandates imposed by insurance and government agencies that I MUST
do, otherwise patient services are denied.

so, to cope with these paperwork and beuracratic issues I must higher more staff. So I must see more patients in a day to pay for this staff.

which leads to your observation

“Furthermore, there’s a trend toward dumping patients on hospital based physicians when they’re admitted … which leaves a patient without the generalist they’ve carefully chosen for themselves”

The generalist simply ,out of exhaustion, is unable to do hospital work as the office work is relentless.

hence there are 10,000 hospitalists now in the U.S. but the demand is for 25,000. Hence record low number of students are choosing primary care.

http://www.graham-center.org/x468.xml

A very sad commentary is that about 75 % or more of these hospital based physicians were once primary care physicians who decided that the beuracracy of primary care was not worth fighting. Hospital care remains much less hassle free for the physician. It is intense ,as every patient is very ill, but their are far fewer paper work hassles.

the medical system, as long as controlled by comanies that make billions of dollars of profit, will ot change.

why would any industry give up such a profitable enterprise ?

As a person with a chronic illness which is hard to manage (not diabetes) … I have to say that I’m completely aware that my care rests almost totally in my hands. If I skip meds, eat something I shouldn’t, don’t report a new infection … no one is there to slap my hands … but I can certainly tell that I’m making myself worse. All my physician can do is treat what I present with, and hope that I’ll behave …

That said, I don’t think I personally *know* any physicians who would (could) have written that blog post. For that reason, (and a few other reasons,) I’ve stopped seeing all but one of my physicians, and the only reason I still see him is because I know that I wouldn’t live long without the delicate balance of meds he’s prescribing.

I think there is some serious frustration on both sides of people equation in medicine. You physicians are expected to be perfect, to never make a mistake, to never have a headache, to never have a bad day … personal problems … and to be on tap 24/7. And if you do make a mistake – God help you and your insurance company! You have pressures on you to keep patients from costing the system too much – and pressures on you to cover all of your bases … tough job. I don’t know why anyone would want it …

From the patient’s perspective, medicine is becoming so impersonal that it’s frightening. A chronically ill person can see so many different specialists, that no one has a clue what anyone else is doing. If the generalist is not on top of the situation, organizing the data that he receives from all of the different specialists, then the patient can be in serious trouble. Too many cooks, and all of that … and to mix a couple of metaphors, none of them are connecting the dots.

Furthermore, there’s a trend toward dumping patients on hospital based physicians when they’re admitted … which leaves a patient without the generalist they’ve carefully chosen for themselves and learned to trust, and who knows their particular problems best … and all at a time when they’re at their most vulnerable and frightened, and need that familiarity every bit as much as they need whatever treatment they’re about to receive. I can’t tell you how threatening is.

It leaves me feeling that I shouldn’t bother to see anyone – because when I’m most in need, I’m going to be stuck with some stranger anyway – one who may not even speak my language!

I think the system is broken, in more ways than I’ve touched on here … and that it’s going to get worse before it gets better (IF it gets better.) While medical advances continue at a breathtaking pace, the medical system crumbles under its own ungainly weight. None of the advances are going to do the physicians or patients any good if the “delivery system” fails.