This is also in my journal.

Take Charge be Your Own Advocate

This is the most asked set of questions on any support group, by its new members.
How can I get my doctor to take me seriously?
How can I get my doctor to prescribe something stronger or something that works?
What are the magic words to use?

The answer is you have to take charge of your own healthcare. Gone are the days of the small town doctor who was your one and only doctor. Gone are the days of one doctor who reads your whole file and stays on top of what the specialists are doing. The HMOs and now big medical groups have made that impossible. So what are you to do? You have to do it for yourself.

It does not matter if you have been a chronic pain patient for five minutes or five years. If you want proper care and proper meds for your condition you need to join whatever support groups you can. You need to belong to whatever institution/association handles your illness. If you have Multiple Sclerosis join a national advocacy group. If you have Fibromyalgia join a national advocacy group. Not just an internet support group. You will get updates on latest treatment options and medications for your illness.

Contact all and get copies of all diagnostic studies from every facility you can remember. Get both the film and the reports. Film comes on CD now, so it is easy to carry. Contact the hospitals you have been to as well. Go back three to five years. Take the records with you to new doctor appointments, and to emergency rooms for acute care. Make sure in the future to get copies of all doctors notes from each appointment you go to. Make friends with the front office person or the doctors aide and have them make a photocopy. Please dont leave the office without them. Dont forget to get a printout from the pharmacy.

Compile a complete file in one neat place. If you have Microsoft Office you can use a template for medical records. It is a very comprehensive new patient packet. I review mine monthly, if only to change the date on it. Every prescription change, every new appt. is listed on it. It goes with me everywhere I go. On vacation, to relatives houses and to the supermarket. Mine is on a flash drive I got from Medi-Alert. I wear a bracelet that shows the following;

FRONT SIDE
My real name
Cervical implant, lumbar implant
Chronic pain patient
Allergies Ativan

BACKSIDE
Flash drive keychain
Contact Dr. Rhoten and his phone number

The flash drive which was under $50 and comes with perks, for the extra money has the new patient packet, it has enough capacity to handle scanned copies of my last office visit notes. Copies of my films are on it. Not all MRIs but a few frames. Just to give them an idea. My last blood work. Most importantly it has my meds and my doctors phone numbers.

Now some would say I am anal in my record keeping. But god forbid we are in a car accident, they need to know whats in my system, and that they need to take precautions because of the spinal implants. The once or twice per year I have to go to the emergency room for acute flare ups, I am armed to the teeth with paperwork. I am not treated as a drug seeker, but a chronic patient with knowledge.

How To See A Specialist

Now it is time to discuss how to get to see a specialist. In order to get to see a specialist and get the diagnostic tests you know you need you have to understand how the medical community works. Most doctors are in medical groups now. It doesnt matter if you are HMO or not. Doctors are under contract by their employers to provide its patients with care, at the lowest cost possible. Every year or two when their contracts are up for renewal their employers look to see how much they spent on patients. If the number is to high, they are dismissed or renewed but without a pay raise. If the number is low they get a nice fat raise.

So if you go in with shooting pain down your leg, your primary doctor will order an x-ray. We all know that x-rays do not show discs and nerves. So it wont show a bulge, rupture, stenosis and so on. But unless you are urinating on yourself, you are not getting an MRI. The doctor will try to treat you himself. Dont go for it. Demand a specialist referral. If your doctor doesnt offer you one sit in the exam room and demand to see a patient advocate. So now they are going to give you a referral. Bring all your files with you. Ask the specialist to order the diagnostic studies, specialists have different arrangements than general practitioners so they are more likely to order the test. Do not go for some sort of treatment without having the film study done, or blood work if you have an physical problem that is not muscle skeletal.

Say the specialist doesnt order the films study or your patient advocate doesnt help you get a referral, call the patient services on back of your insurance card and get them involved. If that doesnt work ask your human resources manager to call them. If they think your employer will switch companies next year they are more likely to help. I have used this one and got to a specialist the same day.

So now you have become your own advocate and you have a diagnosis, call your insurance company and ask for an out of the area or out of network second opinion. (always get a second opinion on surgeries) Many companies have this but dont tell you about it. So now you are positive of your condition. Go to the internet and read everything you can on the subject. Printout pages you want to share with your doctors. Since you suffer from chronic pain, you want to see a pain specialist, ask for the referral most likely your specialist and not the GP will do this for you.

Off for your first or fortieth appointment with the pain specialist, printouts are a must. If there is a procedure i.e. epidurals, or therapy like warm water stretches for Fibro and lupus get the pain doctor to refer you for PT or put in the referral for injections. If you have done your own homework, you are aware of what medications are FDA approved for your condition, you know you need a long acting medication and have read about which ones work best. Printout the pages on this and talk with your pain doctor. Printout discussion posts as well. Tell the doctor the truth. I belong to a support group for my condition and many of the members get relief from (name of med) I would like to try it too.

Do not expect to leave your pain doctors office with a fist full of prescriptions for scheduled narcotics. Many want to see you at least a second time or arrange for a treatment or PT before they will prescribe a long acting med like morphine. You should however leave the appointment with a pain med, a nerve pain med, maybe a muscle relaxer or anti-inflammatory. Of course it depends on your condition.

No matter if you feel depressed or not, ask for a referral for mental health. You may be able to self refer for this. Go see someone. Anti-depressants help chronic pain patients cope with the lows you are sure to have. At least rule out the need for one.

What you have just read is for the American healthcare system. If you are in a country with public insurance you still have to demand, you still have to carry copies of all your records. The difference is in some countries you dont get copies because since you dont pay, you dont own the rights to the tests. Thats crap. If you are nice to the nurses and to the doctors staff, you might be able to get copies. Plus in some countries specialists appointments are months away. If you are nice you can get on a cancellation call list. Ask to be placed on one no matter where you live.

That is a point for all of us, being nice to the doctors aide, nurse or front office person on the phone and in person will get you so much more. You often can get your referrals stat. You get the best appt. times etc. Remember Karma, if you are mean to someone than someone will be mean back.

No doctor should cutoff your meds cold turkey, if your doctors tell you, the meds are not helping so we are going to stop them, dont go for it. Stay your ground. If they insist you dont need them explain you want to wean off them slowly, the doctor has to help you. If they do not call your medical groups patient advocate immediately, dont leave the doctors office till you speak to someone. Now the doctor will wean you off, this means some extra pain but you can use the month to seek a new doctor to help you. Or you can try what the doctor says, at least you have a choice.

Groups like this are a major plus.

Hey, I am in Your Town, USA does anyone have a pain doctor within 100 miles of here? You will get a response you can member search on DS for people in your state. Do so. Ask what they think of their doctor or medical group. Take charge.

Now this isnt a fool proof system to get treatment. It isnt a guarantee to getting medications. There is no such thing. What this is, is a system that shows your doctors you know whats going on, that you are a well educated patient, and doctors really do respect well educated patients. If you have the rare doctor who doesnt like educated patients switch doctors. I have, my pain doctor works with me, he changes my meds on my asking if he agrees. At least he listens.

THE BEST DOCTORS ARE THE ONES WHO LOOK YOU IN THE EYE AND LISTEN.

A note;

I am not afraid of surgery, I dont like it but am willing to go under the knife for relief. I am also the type of person who is not afraid of new treatments, meds, or surgeries. Go to www.clinicaltrials.gov this is an FDA website. Look up your condition at least once per month, a week before your appointment what new is going on. Whether it is a pill or surgery read about it, discuss this with your specialist or pain doctor. You can always call the participating doctor in your area and see if the consultation is free or if you can afford the appointment decide if you want to try it. The criteria for acceptance is always listed so you know if you qualify or at least may qualify before going.

My neurosurgeon fought for four months the hospital that said no to my surgery. On a vacation to Europe he went to a seminar on a surgery not approved in the U.S., nor was it in clinical trials. He called me at home and scheduled me for the experimental procedure. It took him 2 years to get paid for his efforts performing the procedure that is still not FDA approved at one level. I have it on four. Because I was willing to go for it, and he is the type of doctor who isnt afraid of experimental procedures.

As long as you are willing to fight the system you have a chance to get the treatment and pain relief you need.

Ouch