Will You Be Able to Afford Your New Health Insurance?

Last November I wrote about my displeasure with the changes coming in 2013 to medical flexible spending accounts (FSA), the result of more provisions of the Patient Protection and Affordable Care Act (PPACA), a.k.a. Obamacare being implemented.  But those aren't the only changes looming on the horizon.  2014 and 2018 are also years when more big changes are coming.

Increased Out-of-pocket Medical Expenses

I was quite taken aback when I found out the ceiling on health plan out-of-pocket expenses will rise to $6,000 for individuals and $12,000 for families starting in 2014.

First, let's answer the question: So what are out-of-pocket medical expenses?  They include things like deductibles, co-insurance, premiums and co-pays; they are the "cost-sharing" provisions in your health insurance plan.

I logged into our health insurance plan's website to see what our out-of-pocket maximums are for this year and discovered they are no where near the new 2014 $6,000/$12,000 limits.  Then I got worried.  What if my husband's employer decided to raise the out-of-pocket maximums to the new limits in 2014?  How much would we have to pay out-of-pocket before our health insurance benefits actually kicked in?  And how are we going to be able to afford to pay these higher out-of-pocket medical costs?

Harder to Deduct Medical Expenses

Adding insult to injury is that fact that this year, deducting itemized medical expenses on your Federal taxes is going to be much harder.  Before, you could deduct any expenses that where higher than 7.5% of your adjusted gross income.  Starting in 2013, that percentage rises to 10%.

So we are facing higher out-of-pocket medical expenses and a reduced ability to deduct them on our taxes.

New Trend: High Deductible Health Plans

So how did our legislators decide on these new out-of-pocket medical expense guidelines?  They were set based on rates associated with high deductible health plans.

According to Kaiser Health News, high-deductible plans are becoming the new trend in health care coverage. They say that Fortune 500 companies like General Electric, Chrysler, Wells Fargo, American Express, JPMorgan and Whole Foods are all switching the health plans they offer their employees to this model.

Historically, most people who got a high deductible health insurance were healthy.  They didn't think they'd need to use their health insurance, so they choose this option "just in case" something might happen.  Hence these plans were sometimes called catastrophic coverage plans.

Employers like these plans because it means they can contribute less to their employees' health care costs.  In the changing world of health plans, these kinds of plans are now being viewed as "consumer-driven" which adds to their appeal.  Here's how this thinking goes:

If the employee has to pay with their money first to get medical care, then they will:

1. take better care of themselves to avoid needing medical care 
2. be more concerned about medical costs and 
3. opt out of unnecessary tests and procedures when they do go to the doctor

Are These Changes a Recipe for Disaster?

O.K., so I have some questions and concerns.

How is the average patient supposed to "shop" for low-cost, quality medical care when this kind of information is currently not available?  And how are patients supposed to know what medical tests and procedures are needed and which ones aren't?

What will we have to do?  Take our laptops with us to medical appointments and use Dr. Google to figure out if what we are being told is the standard of care?  Or worse, delay care so we can research the alternatives before making a decision?

I think this high deductible health care model is so unfriendly to those of us with chronic illness!  How we all *wish* it were as easy as just "taking better care of ourselves."  We need to see our medical providers just to maintain what reduced quality of life and level of function we do have.

Plus is lower cost medical care really the answer for people living with chronic illness?  Many of us started with general practitioners when we first became ill and quickly learned that we needed specialists in order to get accurate diagnoses and treatments.  Specialists will cost more to see, but in the long run, they are often the only ones who possess the knowledge, expertise and skills needed to keep us stable and functioning to the best of our abilities.

How I View These Newest "Reforms"

So we are all going to be mandated to pay for medical insurance.  Then we are going to have to pay high out-of-pocket costs to access the health care system before that medical insurance kicks in and starts actually paying the bills.  Which means some people will have a whole new problem--will they be able to afford to use their new health insurance?

I think offer health plans that erect financial obstacles to obtaining necessary medical care is ridiculous.  How does this make any sense?  I think these new guidelines and trends will mean that people will forgo medical appointments when they don't have the money to pay out-of-pocket expenses.  And when people put off seeing a doctor because they can't afford it, this increases the number of health complications, trips to the emergency room and hospitalizations.

So is health care reform really helping us or just making things more difficult and complicated?  I have serious doubts that this will make health care more accessible or affordable.  I'd love to hear what you think.

My Favorite Smart Phone Health App #NHBPM

Do you often ask yourself, "Did I take my last dose of X?"  Well then, this is the app for you!

The main function of the Med Helper app is to help you create a schedule for all the medications and supplements you take on a regular basis, whether that's daily, weekly, monthly or something in-between. Then, when it's time to take your medicine, you can set an alarm to remind you.

Plus this app can also track medications you take as needed.

If you put in the time and effort, you can even have this app track your inventory of medications and let you know when you need to order refills. How cool is that?

There are also menus for noting your vital signs (like pulse, blood glucose and pain level), notes about your health care and contact information for your doctors and pharmacies.  You can also schedule and keep track of your medical appointments and create multiple user profiles (for yourself, your spouse, your kids, etc.)

There is a comprehensive reporting menu which has the ability to export all the information you entered as spreadsheets attached to an email or saved to programs like Evernote.  At some point the folks at Med Helper say they will be adding a cloud backup feature and I would gladly pay for the Pro version to use it.

There is some work involved to get started, so be prepared because it will take some time to enter in all your prescriptions, especially if you are taking multiple medications. But once they are in there, you are good to go.  Plus if you stop a medication, there is no need to delete it, which is helpful if you ever need to start taking it again in the future.

I tried several similar app before I found Med Helper and I think this is by far the best one.  It is a pretty comprehensive app, but after using it for a while I do have some suggestions for making it even bettert:

• add a sync function to the Android contact and calendar for the doctor and pharmacy contact information and appointment scheduling
• allow the user to create a medication schedule based on the time of day (morning, noon, evening, etc.) instead of specific times (8 am, 12 PM, 7PM)

I was so impressed that I rated Med Helper 5 stars on my review at Google Play.

Quick App Facts

Med Helper

available for Android and iOS

requires Android 2.1 and up

rated 4.3 out of 5 on Google Play

downloads: between 50K and 100K in the last 30 days on Google Play

current version: 2.5 1 1

last updated: 9/11/2012

price: Lite free
           Pro $3.99
website: http://medhelperapp.com/

Screenshots (click to enlarge)




From the Google Play website:

Description

Prescription and Pill reminder. Full featured with logging and data export.  Your healthcare assistant.

MedHelper tracks medication, treatment and appointment schedules and stores information for accurate prescription inventory, gentle reminders and an ongoing exportable log. Taking the right medication at the right time is essential to your personal healthcare. Never miss a dose again.

Features:

-Multiple profiles for family healthcare coordination.
-Alarm reminder with snooze.
-Log of past doses.
-Track multiple prescriptions and inventory.
-Track vitals.
-Record Healthcare team’s contact information and appointments.
-Record Pharmacy information and prescription notes (refills available, etc.)
-Flexible scheduling.
-Exportable reports.

Overview:

Med Helper is designed to require minimal input. For simple situations it can be configured in a couple of minutes. Use it to track prescriptions, refills, medications, doctors, pharmacies and relevant personal info such as allergies.

Notifications alert you when it's time to take medication allowing you to record the specific dosage, snooze the reminder or skip the dosage entirely. Can also be used to track dosages for take as needed medication to help stay within the recommended hourly limits.

Health Activist Soapbox: Health Care Reform Needs Reform! #NHBPM

I'm of the opinion that we rarely get things right on the first attempt.  I think it isn't until we give it a go for several rounds that we finally get closer to what we want, need or envision.

So when I think  about the Patient Protection and Affordable Care Act (PPACA), a.k.a. Obamacare, what pops into my mind is, "First draft, needs a revision."

I already know I don't like the changes the PPACA makes to:

• medical flexible spending accounts
• the medical expense deduction on Federal income taxes
• the tax on the manufactures and importers of medical devices

You might think I'm just complaining, but mark my words.  I predict that once this massive 906 page law is fully in effect, we are all going to encounter an unpleasant surprise or two when it comes to our health care.

As far as I am concerned, this isn't a done deal.  Sure, lots of people are celebrating this as a historic win, but I see this as a work-in-progress and a new advocacy issue, especially since I've been told that the needs of those of us with chronic illness weren't really taken into consideration during the writing of this new law.  With what little I know, I can already see that the PPACA needs changes, revisions and rewrites, and sooner than later.

There is a lot of ground to cover here, but right now I just want to talk about the changes to medical FSAs.  So here is my opinion on the changes that take effect January 1, 2013 and why I think you need to be concerned too if you are covered by an employer-sponsored cafeteria benefit plan.

Medical Flexible Spending Accounts (FSA)

What is an FSA? A benefit program where before-tax money is deducted from an employee's paycheck and placed into an account.  The account is used by the employee and their family to pay out-of-pocket medical expenses.

Why haven't I heard of FSAs before?  According to the Employers Council on Flexible Compensation, only 25% of eligible working Americans take advantage of this benefit.

How does the PPACA change FSAs?  Before, the employee could decide how much to put into their FSA account every year.  Beginning January 1, 2013, contributions to medical FSAs will be limited to $2,500 for an employee and their family.

Why is this a problem? This change will hurt those who have a lot of out-of-pocket medical expenses, like those living with chronic illness, autism or children with special needs.

Why should I care? Out-of-pocket expenses included things like deductibles, co-insurance and co-pays. If you have health insurance, you will be paying these fees as part of cost-sharing provisions in the PPACA.

What you might not know is that the PPACA puts the ceiling on health plan out-of-pocket expenses to $6,000 for individuals and $12,000 for families starting in 2014.  These limits were set based on rates associated with high deductible health plans and, of course, can be raised in subsequent years due to inflation.

Now I just looked and the current deductibles for our employer-sponsored health insurance plan are no where near this high.  Which has got me worried that my husband's employer could decide to raise deductibles to meet their growing costs under the PPACA.  Sure enough, we are in open enrollment right now and our deductible has gone up, not a lot, but still every little bit means less money for other expenses.

O.K., back to why I think you should care...

In previous years, you could put $12,000 into your FSA and you'd be covered.  By doing so, you saved yourself anywhere between 25 to 40 cents on every dollar spent since you were using pre-tax money.  Beginning in 2013, the worse case scenario is you paying out $9,500 of your hard-earned after-tax dollars to pay for health care expenses.  By my calculations, in this scenario you'll be paying an extra $2, 375 to $3,800 in taxes just by paying your medical bills.

What do FSA experts say about this? My husband's employer uses a company called WageWorks to manage its FSA program.  Jody Dietel, the compliance officer for WageWorks, said in a recent interview that, "...it’s not really a health care friendly policy—it was a revenue grab.”

In other words, this is one way working Americans and their families are funding the PPACA.

Are We Going to Pay More for Healthcare?

I guess that is the $25,000 question, isn't it?  Even the respected Kaiser Family Foundation says,

No one knows for sure. Even supporters of the law acknowledge its steps to control health costs, such as incentives to coordinate care better, may take a while to show significant savings. Opponents say the law’s additional coverage requirements will make health insurance more expensive for individuals and for the government.

Like I said, I think we're all in for some health care surprises.


Related Articles

• After The Election: A Consumer's Guide To The Health Law  
• Obamacare Strikes Again: New Limits on Spending Accounts  
• Deducting Medical Expenses in 2013 Will Be Harder  
• How Obamacare's Medical Device Tax Will Stifle Advancements in Health Care  

Creating Better Doctors' Offices for Better Healthcare Experiences #NHBPM

I spend way too much time going to see doctors.  Given that my usual trips leave me with plenty of time of soak up the scenery--or lack thereof--while waiting patiently for my 15 minutes, I've got some opinions on what works and what doesn't work when it comes to medical settings.  So today I am going to offer suggestions on how you can redesign your medical office space.

The Waiting Room

This is a place where first impressions are made.  A clean, neat and tidy waiting room makes me feel more confident about the care I am about to receive.  A dingy, messy and unattractive space make me wonder what in the world I am doing there.

So for starters, I'd suggest a nice coat of paint in a soothing color, like blue, green, gold, yellow, red brown, red violet or soft gray. Keep the shade on the lighter and brighter side so the spaces in the office feel more open and comfortable.  Be sure to extend those colors from the waiting room into the other rooms too, because nothing screams cold, impersonal and clinical like a plain, white examination room.

Once the walls are painted, color-coordinate the furniture, fixtures and decor so everything has a pulled-together look.  And for goodness sake, don't just buy chairs and couches on looks alone; have someone from your office test drive them to make sure they are comfortable!  Just like Goldilocks, a patient will be happier waiting 30 minutes for you in a chair that is "just right" versus a chair that is too hard or too soft.

Be sure you have enough seating surfaces to accommodate your patient flow, but not so many that patient are cramped together and invading each other's personal space.

Having something nice to look at on the wall also helps.   I think artwork is preferable over TVs, which are usually too loud, intrusive or tuned to a program no one in the waiting room wants to be watching.  Soft lighting and ambient music are nice touches too.  If you decide to add plants or a fish tank, just be sure someone is going to take care of them, because nothing is more unappealing than flora and fauna struggling to survive.

My last suggestion has to do with the reception desk.  Nothing can be more tiring and frustrating that having to wait in a long line to get checked in, so consider a sign in sheet for small offices or a take-a-number call system for larger offices and clinics.  That way patients can comfortably relax in the "just right" chairs you've picked out for them.  I prefer a reception desk where I can sit down across from the receptionist and be able to complete paperwork on a table-like surface.  If that is not possible, then add a table and chairs to the waiting area so this task is easier for patients.

If the receptionist also answers the phone, schedules procedures or discusses patient care matters with you, consider added a screen to the reception desk.  A screen helps maintain patient privacy for those conversations.  It also creates a more soothing atmosphere where patients aren't bombarded by the noise and activity going on in your front office.

The Exam Room

My biggest pet peeve about exam rooms is the temperature.  They are always either too hot or too cold.  Either way, the wrong temperature can be a huge distraction during my visit with you.

Next is the seating arrangements.  Personally, I don't want the exam table to be my only seating option in the room.  So please, have at least one, and preferably two, comfortable chairs in the exam room specifically for the patient and their caregiver.

As for that exam table, I find a table that is low to the ground much easier to climb onto.  Then if you need me to be higher, raise me up when you come into the room.  Barring that, a nice sturdy step stool next to the table is really the best way to help me get up there.  Those steps built-in as drawers in the table don't seem wide or deep enough to me.  Once I get on the table, I want to be able to rest my feet flat on some kind of surface because having my legs dangling off the table is very uncomfortable and hurts my low back.

Oh, and I like that curtain by the door that you can draw closed when you ask me to change into an exam gown.  So please do use it.

If the exam room is terribly small, why not reserve it for exams only and invite me into your office to chat with you?  Discussing my health concerns with you in a setting designed for conversations makes me feel like you are really interesting and engaged in my health care.

Instead, I often have to talk with you while awkwardly perched half-naked on that uncomfortable exam table or straining my neck to look sideways at you while you're gazing into a computer screen reading lab results or writing your progress note.

Having an office space that is clean and attractive, meets my needs as a patient and is conducive to quality doctor-patient interactions helps me feel better about my healthcare experience.  Plus when I am more relaxed and comfortable, I am more open and receptive to your medical advice and instructions.

Is There a Healthcare "High Road" When You Are Chronically Ill? #NHBPM

Lately I've been wondering if there really is a "high road" when it comes to dealing with the health care system when you live with chronic illness, especially in light of all the problems that emerged during my recent Hepatitis C treatment at the UCLA Health System.

What is the "high road?"

high road

n. 

1.	a.	The easiest or surest path or course: the high road to happiness.
	b.	The most positive, diplomatic, or ethical course.
2.		Chiefly British A main road; a highway.

The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.


In light of what the words "high road" mean, I can say with certainty that my Hep C treatment didn't follow this path!  So naturally, my next question was "Well, why didn't it?"  After much contemplation, I now think I understand "why not."  Ironically, the answer is in the name of my medical care provider network of choice: system.

What Is a System?

At its core, a system is an organized, purposeful entity that is made up of many interconnected and interrelated pieces.  In health care, some of these pieces include: doctors, nurses, allied health professionals, administrators, insurance companies, health care professional licensing boards, pharmaceutical companies, medical technologies, office space, information technologies, politicians and the government.

The people who are part of the health care system are bound by a mission and specific set of beliefs, principles, goals and objectives, procedures, methods and routines.  Within the system there is a unique culture with norms for social conduct, tiers of hierarchy and privilege, boundaries determining who is in and who is out of the system, standards for conflict resolution and mechanisms for how feedback is solicited, received and processed.  People carry out specific activities, perform certain duties and solve particular problems that fit with the mission and goals of the health care system.

So Where Do We Fit in the System?

In the simplest of terms, we are community members who are sick or injured and enter the system as "patients" to receive medical care so we can be restored to health and return back to the community.  To us, health care is a collection of services given to us in an effort to change our state of health.

Another way to look at this is that patients are inputs into, and healthy people outputs from, the health care system.

Which is where I think the problem arises for those of us with chronic illness.  We are not simple inputs.  We present with a persistent state of illness, with health problems the system can't cure and often has trouble diagnosing.  At best, it can only manage our health; at worst, it throws its hands up in frustration and resignation because we just don't leave the health care system as a successful output. That's because the health care system:

• hasn't figure out an appropriate model of care for us that meets our unique needs
• hasn't expanded its definition of  health to include concepts like quality of life and palliative care which is what we are seeking

So if health care is a system, and we patients are the inputs and outputs of that system, what might the high road in health care look like?  Let's go back to the definition to try and answer this question.

The Easiest or Surest Course

Based on my experiences in the health care system, here is what I think the "easy and sure" health care high road looks like:

• patients accept that doctors and other health professionals in the system are the experts
• patients present with medical conditions the doctor can easily identify with diagnostic tests
• those medical problems can be treated and cured with existing medications or procedures
• patients are compliant with medical treatments and instructions
• patients have medical insurance and/or cash on hand to pay medical bills
• patients leave the health care system healthier than they entered it 

I think we can all agree that we have, at some point, tried to follow this path.  In fact, when I first became chronically ill, I really, really wanted my doctor to find something wrong with me that could be diagnosed AND treated successfully.  But alas, I don't have conditions that can treated and cured, only ones than can somewhat managed, an outcome me and many of my doctors aren't entirely happy with.

So no, I don't think an "easy and sure" path through health care exists for persons living with chronic illness.

The Most Positive, Diplomatic, or Ethical Course  

O.K., let try again using the alternate definition.  Despite my long 24 year history with the system, I'm not quite sure what health care thinks is "most positive, diplomatic, or ethical," so I am going to take the liberty of defining these variables myself:

Positive

• educating myself about my chronic health problems so I participate in my health care as an empowered, engaged, equipped and enabled patient
• accepting that my doctors may be limited in terms of what they can do for me
• giving balanced feedback about what is and isn't working for me in regards to the care I receive

Diplomatic

• using active listening skills and working to build a successful patient-provider relationship
• reminding my health care providers about all my chronic conditions
• letting my doctors know about my other health providers, what I see them for and what treatments they provide me
• asking for a second opinion or referrals when a doctor doesn't seem to be able to help me

Ethical

• rejecting substandard medical care and watching out for medical errors
• reporting problems and giving feedback to the health care system
• being a participant in my medical care and exercising my right to have the final say on all medical decisions
• asking for reasonable accommodations as afforded to me by the Americans with Disabilities Act 
• affirming my right to appropriate medical care so I do not suffer needlessly

Wow, that feels much better!  And I am happy to say I have definitely taken this high road and this is definitely the way I want to continue to approach my ongoing healthcare.

I also learned that someone who embraces this viewpoint actually has a name: they're called an e-patients.  I found this article over at ClinicalPosters.com--How Empowered Physicians Can Embrace e-Patients--which discusses in-depth this new category of modern patient.  You'll also be encouraged to know that the Society for Participatory Medicine thinks we e-patients can help heal the healthcare system.

That said, my personal experiences suggest that that the health care system as a whole isn't ready for communicating with e-patients just yet.  Neither does respected physician blogger Kevin M.D. 

But that isn't going to stop me from continuing to travel down this high road.  Maintaining what remains of my precious health is so much more important to me than conforming and letting the health care system squish me like a square peg into a round hole.

That's because I am an optimist...and a fighter, despite the myriad challenges. I believe what Dr. Howard Richards says:

The phrase "fighting the system" alludes to the old folk saying "You can't fight the system." This saying expresses an intuitive sense that whoever wins, whoever loses, whatever group or class wins, whatever group or class loses, the system always wins. The system has remarkable endurance; it successfully defies attempts to change it, and it punishes those who try. Nevertheless, I am saying, you can fight the system if you know enough about (it).

Now that we all know a little more about the nature of the health care system, we can all be encouraged to fight on, not just for healthcare transformation, but for a healthcare revolution that embraces new ways of thinking about health and medical care and replaces the existing norms with more principled and progressive thoughts, ideas and actions.

That's my opinion.  What do you think?

Who to Contact When You Need to File a Healthcare Related Grievance

As I discussed on Wednesday in my post Lessons Learned as a Patient in the UCLA Health System, sometimes you just need to file a complaint or grievance when things don't go the way they ought to when it comes to your healthcare.

Since I'm going through this process now myself, I decided to put together a resource list to share with you here on my blog.  I hope my research on this topic will make starting the process a little easier for you. Plus I was pleasantly surprised when I discovered that many of these agencies are set up to take complaints online, which saves you the hassle of printing and preparing forms and heading to the post office to get them in the mail.

So here they are, my suggested list of organizations to contact in the United States when you have grievance against your physician, nurse, hospital and/or health plan:

Hospital and Health Facility Complaints:

Most hospitals and healthcare facilities have in-house patient services departments that may be able to help you.  Start by asking a member of your healthcare team about who is available to assist you, like your nurse, social worker or the receptionist.  You can also call the hospital operator and ask for the name and number of the department that handles patient complaints.

Call your health insurance company.

1. They may have a nurse case management program that can advocate on your behalf.  Their nurses will talk with you, contact your medical providers and working with you to manage your health care.  This may be a free benefit to you depending on your health plan.
2. You can ask to file a complaint against any network or preferred hospital or facility and your insurance company's provider relations department will investigate.  Just know that they may not inform you of the results of their investigation.

The Joint Commission, formerly the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), is a non-profit organization that accredits hospitals and health institutions nationwide.  Their Office of Quality Monitoring will review complaints filed against accredited institutions.

Contact your state's Department of Health.  This is the agency in your state that is either responsible for, or can connect you to, the division that licenses health care facilities.  You can browse a complete list of each states' Department of Health here courtesy of the Centers for Disease Control website.

In addition, your state may have a Health Care Association or Society that might want to hear about your concerns.  While not present in every state, you can see a list for some of the organizations here courtesy of the Joint Commission website.

Physician Complaints:

Call your health insurance company.

1. They may have a nurse case management program that can advocate on your behalf.  Their nurses will talk with you, contact your doctor and work with you both to manage your health care.  This may be a free benefit to you depending on your health plan.
2. You can ask to file a complaint against any network or preferred physician (or other health care providers.)  Their provider relations department will investigate your complaint.  Just know that they may not inform you of the results of their investigation.

Contact your state's Medical Society or Association.  These are membership societies so you'll first want to verify that your doctor is a member.  Then check to see if they are set up to receive complaints directly or if they provide referrals to the organizations in your state who are.  Find a complete list of medical societies here courtesy of the American Medical Association.

Your doctor needs to be licensed to practice medicine and your state's Medical Licensing Board is the entity that handles consumer complaints about doctors.  Look for the complete list here courtesy of the American Medical Association.

NOTE: Your state may also have licensing boards for other allied health professionals, like chiropractors  pharmacists, psychologists, social workers and physical and occupational therapists.

Nurse Complaints:

Nurses also need to be licensed to practice nursing, so if your complaint is about a nurse practitioner, registered nurse, licensed practical nurse or certified nursing assistant, contact the State Nursing Board.  You can view a complete list here courtesy of the National Council of State Boards of Nursing.

Health Plan Complaints:

Health plans are required by law to have a process to receive and respond to member complaints and grievances. So don't hesitate to call your health insurance plan, tell them you are dissatisfied with their services, determination of benefits or the health care treatment received through their plan and want to file a complaint or grievance.  You can also refer to your member handbook or your health plan's website to learn how to use their grievance process.

If you are covered under an employer-sponsored health plan, consider talking to your Human Resources Department or contacting the U.S. Department of Labor’s Employee Benefits Advisors.

To contact your state's Department of Insurance, which regulates health insurance, head to the USA.gov website, click on your state and browse for the category State Insurance Regulators.

For complaints about your Medicare supplemental health plan or prescription drug plan, go here to the Medicare website to learn more about filing a complaint.

For complaints about Medicare, you can either speak with your State Health Insurance Program (SHIP) or the Medicare Beneficiary Ombudsman.

For information about filing a complaint about your state Medicaid program, contact your local County Office of Public Assistance.

Complaints About Medications:

Here is a complete list by state of Consumer Complaint Coordinators at the Food and Drug Administration (FDA) that you can call directly to report drug adverse reactions and other issues with FDA-regulated products.

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This is not a complete list and I welcome your input in revising and expanding this resource.  In addition, I'd like to hear about your experiences in contacting any of the entities mentioned above, both good and bad.  So please feel free to add information and your input by submitting a comment below.

Lessons I Learned From Being a Patient in the UCLA Health System

It's been over six weeks since the end of my Hepatitis C treatment and I've spent some time reflecting on my recent experience as a patient in the UCLA Health System.  Today I'm sharing with you some of the lessons I learned over the last seven months.  I hope some of these observations might be useful to you when you find your health care doesn't meet your expectations.

Sometimes the Health Care System Fails Us

The California Medical Association says:

As a health care consumer, there may be times when you are unhappy with your physician, hospital, or health plan and need to make a complaint. Some problems can be resolved informally simply by talking to the parties involved, but others will require that you follow an official set of "grievance procedures.” 

I'm amused by the easy way this statement attempts to put this issue into perspective.  I'm sure most healthy people might find a measure of comfort in this plainly stated fact, but for me, a more accurate statement would be:

As a person living with multiple chronic illnesses, you will often be frustrated and unhappy with how your physicians, hospital and/or health plan fail to provide you with the appropriate, cost-effective and person-centered medical care that you both need and deserve.

I believe how my Hepatitis C treatment unfolded is yet another example of how the health care system is not organized enough to treat me, a patient with multiple chronic illness.

Sometimes We Really Need Help

Second, can I be honest with you and acknowledge that there are times when I am so beaten down and worn out from my health problems and my medical treatments that I just can't be my best advocate?  Because this is exactly what happened to me!

Can I also say that I am so frustrated when I find myself in this position way more often than I would like, just because I am a sick chick?  I loathe putting my fate in the hands of others, especially when I have been let down more times than I care to count.  But once I got past the feelings of anger and vulnerability, I knew I just had to bite the bullet and ask for help.

Sometimes Conflicts Arise with Our Health Care Providers

I thought I had a good doctor-patient relationship with my hepatologist, a belief was based on the handful of 15 minutes appointment I had with him over the past 4 and 1/2 years.  I wasn't expecting treatment to be easy, but I thought my doctor would be there for me.  So image my surprise when, on two different occasions during my treatment, I realized I needed someone to help me resolve emerging conflicts between myself, my doctor and his hepatology treatment team.

As I admitted above, during treatment I was too overwhelmed by a boatload of side-effects to be able to figure out and resolve these new communication problems by myself. The only thing I knew with absolute certainty was that my needs as a patient were not being met and I was afraid my treatment success would be jeopardized if I couldn't get things straightened out.

Sometimes Even Patient Advocates Fail Us

So at the time it seems logical to contact the UCLA Patient Affairs Department and ask them to help me:

"The Patient Liaisons of the UCLA Health System...assist patients and their family members with various concerns that relate to their overall experience at UCLA. Such issues may include, but are not limited to, quality of care, staff interactions, access to care and general assistance and information." 

Unfortunately I didn't receive the assistance I needed from Patient Affairs.  So on July 24th, during a telephone conversation with the manager of the department, I ask to file a formal grievance.

This is what I thought would happen next:

"When you or a family member contacts the patient affairs office, the chair of the clinical team responsible for that unit reviews your records. The hospital will then provide a written response to you or schedule a conference." 

--Virgie Mosley, manager of Patient Affairs for the UCLA Health System, quoted by the Los Angeles Times

I was told that a formal grievance could take up to 30 days.  It's been 71 days now and I still haven't gotten a response from UCLA.

Sometime We Just Need to File a Grievance

When you are chronically ill, your health dictates that you need to pick and chose your battles.  But sometimes taking a stand is critical to winning the health care reform war.  So I decided last week it was time to pursue official grievance procedures, because I want to be an agent for positive health care change and an advocate from persons living with chronic illness, especially those with Hepatitis C infection.

As the patients using the health care system the most, I think it is our responsibility to thoughtfully bring our most pressing concerns to the attention of entities like health care licensing and accrediting bodies.  Because if we fail to speak up and share our concerns, we squander opportunities for the health care system to learn from mistakes, identify gaps in service and correct problems.

While this rarely will make things better for us in the short term, I truly believe it will make things better for all of us in the long run.

We need to keep our eyes on the prize.  We all want a health care system that knows how to competently and compassionately treat persons living with chronic illness.  To get there, we need to make our grievances known to the member of the health care system that have the power to recommend and implement changes.

Resources

I'll be back Friday with a resource list of organizations in the United States that you can contact when you need to file a grievance.


Related articles 

• Key to Healthcare Costs Is to Better Treat Chronically Ill - U.S. News and World Report 
• Hospital and nursing home complaints have an ear - Los Angeles Times

HEALTHWISE: Hepatitis C Treatment Tips from Patients

This is a reprint of an article from the HCV Advocate September 2012 Newletter, reprinted with permission from the author. The reason I am reprinting it is so you can see how my comments and suggestions were incorporated into this article, which is very exciting for me!

I've enhanced the original article with links to the products I used duing Hep C treatment which go to Amazon.com. You can just as easily find most of these products at your local pharmacy or Drugstore.com too.

By the way, many of the patients mentioned in this article are members of the private Facebook group Hepatitis C Family and Friends.  I too am a member of this group.  I have found the members to be extremely warm and inviting, willing to share suggestions and advice and always there to lend an ear or offer support.  The group is comprised of people thinking about, currently undergoing or finished with Hepatitis C treatment.

I encourage you to join the group to get the peer support you'll need to make your journey through Hep C treatment a better one.

I hope you find this article and its resources helpful.

---

HEALTHWISE:
Hepatitis C Treatment Tips from Patients 
Lucinda K. Porter, RN

In May 2011, two protease inhibitors bolstered the fight against chronic hepatitis C virus (HCV) infection. The FDA approved boceprevir (Victrelis) and telaprevir (Incivek) for treatment of patients with genotype 1. Either drug (but not both) is used, along with peginterferon and ribavirin. With response rates hovering around 80%, these are weapons of mass destruction.

I have a lot of experience with HCV treatment, both personally and professionally, so much that I wrote a book (Free from Hepatitis C) to help patients through the process. However, I have not experienced triple therapy, and I am curious about the real story, the nitty-gritty experiences beyond clinical trials, so I asked the experts—patients.


The following is a collection of tips from triple-therapy patients. Talk to your medical provider before trying any of these. Although brand names are mentioned, generic versions may be cheaper. Some contributors have given permission to use their names. To all, named and unnamed—thank you.


Patient advocacy, in particular self-advocacy was mentioned. “Meet the members of your treatment team BEFORE you start treatment.” advises blogger Selena Inouye (www.ohmyachesandpains.info) Sometimes patients meet their primary nurse the day of the first interferon shot, but ask to be seen earlier to see if you feel comfortable with the nurse. This gives patients time to think about what they were told and formulate follow-up questions.


Selena recommends bringing someone with you to appointments to take notes and act as your advocate. Ideally, your doctor has given you information about what to expect, the risks and available resources to help you navigate treatment. Be sure to discuss what side effects need reporting, who and when to report these to and who will be the main person managing them. Find out how to reach medical personnel when the office is closed and what to do in an emergency.


Write everything down and keep all your notes in one place. Don’t rely on your memory. Document everything your medical provider says, record when you took your pills, note your appointment times, and keep copies of all of your labs.


Know your treatment protocol. Confirm that your medical provider uses a highly sensitive viral load test with a lower limit of HCV RNA detection of ≤ 10-15 IU/ml, and quantification of ≤ 25 IU/ml. If something seems amiss or your medical provider deviates from the protocol, ask questions. Use the pharmaceutical company help lines to educate you, support you, and verify all concerns. Your pharmacy is another resource to use.


Mary Northrup finished treatment in May. “This treatment taught me to be my own advocate. Understand that there will be times where you have no choice but to push through the pain and discomfort, but don’t be afraid to rely on your medical team and your support system to lend you a hand.”


“Don’t be afraid to bug your nurse with questions,” says Mary, and if you are like most, you will have many questions. This solid advice is hard for some to practice. We don’t want to be a nuisance. However, as a nurse, I appreciated questions from patients. Patients with questions are engaged in their treatment. In fact, the ones I worried about the most were the ones who never asked me anything.


Here are some more tips: 

• Order the patient starter kits from the drug companies before you begin your treatment. Read all the materials before your education session and bring a written list of questions with you.
• Don’t try to do too much. 
• Accept help and food when offered. 
• Ask for help. 
• Delegate. 
• Rest more, pace yourself and conserve your energy. 
• Let go of as much as possible. 
• Remember that “No” is a complete sentence and don’t be afraid to use it. 
• If you and your medical provider think that you should go on disability, then by all means, do it. 

Nutrition and 20 Grams of Fat Diet 


Many people stressed the importance of maintaining nutrition, and for those taking telaprevir (Incivek), the 20 grams of fat diet headed the list. This is particularly important, as fat optimizes the effectiveness of telaprevir. Deanne English points out that although this is difficult for nighttime doses it is important.


John Adamski (Lake Tahoe HCV Support Administrator) mentioned that insufficient fat with telaprevir caused anal burning and discomfort, and that taking telaprevir 20 minutes after eating worked best for him. Many echoed Teri Gottlieb’s suggestion of collecting lists of foods with 20 grams of fat. Choose food with high quality fat, such as peanut butter, avocado, eggs, and whole milk.


Eat as healthy as you can, as this provides energy. Before you start, stock up on staples and frozen foods. Include items that may help with tummy upset, such as crackers, rice, applesauce, Melba toast, tea, and ginger-flavored items. Selena suggested variety. Nuts, seeds, and bars are handy to have. Always have on hand the fixings for shake mixes. Selena added a tablespoon of canola oil to Boost Carb Glucose Control.


Digestion and Anal Issues


What goes into the body is important, but the other end of the digestive tract dominated discussion about telaprevir. The big issues are diarrhea, anal burning and itching, and butt rashes. To avoid bottom problems and control diarrhea, John suggests taking a good probiotic with 8 ounces of Kefir. (Selena's note: Be careful with probiotics if you are immune suppressed, i.e. your white blood cell count in below normal.) Many used Imodium; one patient took a smaller dose more frequently, with meals. (Selena's note: try using the liquid and taking 2 ml with meals.) Soluble fiber supplements were also mentioned, helping with both diarrhea and constipation.


To protect the bottom, everyone had personal favorites. One wrote, “Get both Analpram (Selena's note: this is a prescription topical hydrocortisone cream) and A&D Ointment. Use Analpram only for anal itching. All other days, always apply a generous amount of A&D Ointment after defecation; it will save you from considerable pain the next time.” Other recommendations were Balneol lotion, zinc ointment, and diaper rash products such as Desitin. (Selena's note: Balneol saved my butt, literally. And I will continue to use it from now on. CVS makes a generic of it, but the best deal I found was ordering it through Subscribe and Save at Amazon.com.)


Skin Issues


Although itching and rashes were common side effects before, these are more so for triple-therapy. Alyson Shuck and others suggest cool showers and antihistamines such as Benadryl, Zyrtec, or prescription Atarax. Keep the skin moist and use fragrant-free products such as Gold Bond Ultimate (soothing, fragrance-free) lotion . Trader Joe’s moisturizing cream is also good. Selena used Cetaphil Restoraderm body wash and moisturizer. The consensus was to avoid hot showers and the sun.


Other Advice
A critical part of success is to take medications on time and as directed. Selena bought the biggest pillbox she could find and labeled it with pill times. (Selena's note: mine was the Ezy Dose Four-a-day Weekly Maxi-pharmadose Medication Organizer.) Program electronic devices, such as your phone or watch to remind you. 

“Start pounding down water two weeks before therapy,” says John Adamski. “The goal is one-half your body weight in ounces/day.” In other words, if you weigh 150 lbs, then aim for 75 ounces of water daily. 

Find a way to track your water intake. Selena bought a container that held eight glasses of water from Bluewave. She added flavors such as lemon, lime, mint, cucumbers, a splash of fruit juice, and MiO mix (sucralose-based drink mix). 

John mentioned that numerous studies showed that people with high vitamin D levels achieved a higher cure rate. Caffeine also seems to give people an edge. This month’s HCV Snapshots includes information about vitamin B12 and zinc supplementation. If you are interested in supplements, talk to your medical provider about these prior to using them. 

Psychosocial Issues 

Managing the emotional highs and lows of HCV treatment can be summarized in two words: antidepressants and support. Pretty much everyone I talked to used antidepressants during treatment. 

“The first thing I learned was to STAY CALM,” wrote Mary Northrup. She did whatever she could to achieve that goal, including turning off the news. “Go easy on yourself. This therapy can be harsh on one mentally...give yourself permission to be a goof ball.” 

Attend an HCV group. Education, information and identification of resources are a valuable focus of HCV groups. Mary received information and found groups acted as a sanity check. Humor is another benefit often gained by being with those who know what you are going through. Where else can you find a group of people who laughingly refer to themselves as the Friday Night Dart Club? 

Keep friends and family informed. Mary did this via an online journal (or blog). Selena started blogging and then found that Facebook and Twitter were better ways to communicate. 

As for support, Selena says, “Recruit a cheering squad. I used Sign Up Genius to engage my social network.” On difficult days, use your support network to vent. Remember to practice restraint of pen and tongue. If you feel angry or defensive, talk to a friend and don’t post anything hostile for at least 24 hours after running it by a trusted confidant. 

Surround yourself with things you enjoy. During difficult times, distract yourself with anything that holds your attention: audio books, movies, TV, scenery, etc. Every day do something that makes you happy and treat yourself to whatever you need to get through this time. One man praised the power of a relaxing bath using herbal bath salts (legal ones) while listening to calm music. 

Celebrate treatment milestones as you go along—there will be many (first shot, first week, first day that you forgot you were on treatment). “Invite your friends to party with you, even if it is virtually on Facebook or Twitter,” advises Selena. 

“Patients contemplating this therapy need to be determined and accept the fact that they will be fairly miserable for at least a few months of this therapy,” said John. “But look at the CURE RATES !!!” 

Yes, the cure rates make it all worth it. 

More Information

• A Guide to Hepatitis C Treatment Side Effect Management 
• HCV Advocate Fact Sheets and Guides 
• HCSP Fact Sheet: 20 Grams of Fat 
• Slaying the Dragon with Food

Many thanks to Lucinda Porter, RN and The HCV Advocate website 

for being trusted sources of information for me on Hepatitis C and its treatment.

Does Your Doctor Owe You a Good Break-up?

On Valentine's Day, this sick chick I can't help but reflect on the number of doctor-patient relationships that I am currently managing.  In fact, I took a moment to jot them all down and I discovered that I am currently seeing 10 doctors.  Wow, that sure seems like a lot of doctors!

My Doctor-Patient Relationships

Now don't get me wrong.  Some of my doctors are great and I truly enjoy working with them to tackle my chronic health problems.  Others are so-so, and at the moment, I am settling for their care until I have the time, energy and ability to search for another doctor that is a better fit for me.

Then there are two doctors that are causing me some real problems right now.  Over the past 12 months, two key doctors in my medical team have suddenly and abruptly "broken up" with me.

My Recent Bad Break Ups

At the beginning of 2011, my cardiologist literally vanished.  I found out she was gone when I called to make a follow-up appointment.  The first support staff member I spoke with simply had no idea what happened to her.  When I was transferred to someone who did know, I was told she was on a sabbatical to finish writing a book.  When I called back several months later, I was told she switched to seeing hospitalized patients only.

Whatever the reason for her absence, she neglected to make arrangements with another physician to take over her patient load and to send out a letter explaining she would no longer be seeing her patients.

My pain management doctor is my most recent bad break up.  I started calling at the end of December to schedule a follow-up appointment and finally got a call back January 10th.  Her staff left a message saying she moved to Fresno and gave me the number to call for an appointment.

Needless to say, a four hour drive so I can continue to see her in-person is so not doable. And finding someone to replace her is turning into a real nightmare.

I have called her office back several times trying to get some referrals from her.  On February 10th I finally got faxed to me the letter she allegedly sent out to all her patients--except me of course--which is dated November 14, 2011.  In it she explained her move, provided a referral list to other doctors and gave a consent form to use to obtain her medical records.  Only the fax I got didn't include those two attachments. When I called back asking for these items, I was told by the staff that they were waiting for the doctor to give these things to them.

She also stated in her letter that she could continue following established patients via telephone and email from her new location.  Wanting to explore this option further, I called both this past Friday and Monday requesting a registration packet and a telephone appointment.  I've been put into voicemail both times that I have called and I am still waiting for a call back.

I also sent the doctor an email, but so far I have received no response.

Not What the Doctor Ordered

While I guess I could dismiss these incidents as just two more examples of how the medical system is broken, the reality is that these actions are both unethical and illegal according to the American Medical Association website.  Unbeknownst to me, they are examples of "patient abandonment."  And according to the Medical Board of California, patient abandonment is a good reason to file a complaint against a medical provider.

I've gone on to learn that, due to their unique and powerful role on our society, doctors are tasked with a special duty of beneficence.  That is a fancy way of saying that they must take actions that are in the best interests of their patients.  What this means in my situation is that my doctors were obligated to give me adequate time to transition to another health care provider and facilitate this transition by providing me with referrals and access to my medical records.

Clearly this is not what has happened.

Now that I know this medical-legal lingo and what it means, I am going to use it in my correspondence with my pain management doctor in an attempt to get her to respond to me in an appropriate fashion.  If that doesn't work, then I will seriously consider filing a complaint with the medical board.  Why?  Because her actions have truly caused a delay in my medical treatment and, at this point, she and her staff are creating unnecessary roadblocks to my ongoing medical care.

Why You Need to Act on This Too

I share this information with you, my readers, because I want you to be informed and consider doing things differently should your doctor ever dump you.  I want to be clear that this isn't about doctors being inconsiderate; it's about doctors breaking the covenant they have with their patients.

Obviously trying to work things out through good communication with your doctor and their staff is your first line of action.  But if that doesn't yield results that are in your best interest, it is time to consider other measures.  

A complaint to a medical licensing board is one of the few tools we patients have to keep our medical providers accountable.  It ensures doctors are fulfilling their ethical and legal obligations as physicians, a career they choose to practice.  It also provides important feedback to medical boards about the conduct of their licensees and identifies areas where continuing medical education is vitally needed.

Most of all, making a complaint empowers you as a patient.  It sends a message that you are not going to put up with bad behavior from your doctor.

So now that you know your doctor's obligations to you, what are your thoughts?  Have you gone through a bad break up with a doctor?  Armed with the information above, how would you handle this situation should it ever happen to you?  How do you feel about holding your doctor accountable?

Can Money Buy You Good Health?

They say that money can't buy you love or happiness, but I am beginning to think that it might actually be able to buy you good health, or at least better health if you live with chronic illness.

I know nowadays there is a lot of talk about the uninsured and those with health insurance.  Correspondingly, you hear a lot about the two different health care systems serving these groups: the publicly funded health care system (think county hospitals and clinics) and the insurance funded health care system (think doctors in private practice, medical centers, etc.)

Having medical insurance and chronic illness, I've spent a good portion of my time and energy access care in the insurance funded health care system over the past eight years.  I've learned a lot of things about how this system care works, enough to write a whole series of blog post.  But perhaps my most perplexing discovery is that there is actually a third health care system that doesn't get a lot of attention, that of the cash-only or self-pay medical practice.

As the name implies, these are physicians and other health care professionals charge up front for their services.  So if you can't pay (or charge the bill to your credit card) you can't be seen.  They don't accept your insurance--in fact many don't belong to insurance networks and have opted-out of Medicaid and Medicare. Most will provide you with a superbill so you can submit their charges to your insurance company, but since their rates are usually above and beyond what your insurance carrier considers "reasonable and customary," you will only be reimbursed for a fraction of what you paid them.

So, in essence, this third health care system is for those who have money, lots and lots of money.

I don't have lots and lots of money, so in the past, whenever I have stumbled upon one of these medical practices, I have steered clear and not given them a second thought.  Which is all well and good except that, as time has gone on and the insurance driven medical system has failed to provide me with adequate care for my chronic illnesses, I now am getting referred to this third system of care because its members provide the services I am seeking.  In this system reside the experts in things like pain management, rare diseases and disorders and novel and cutting edge treatments that pick up where conventional approaches fall short. 

Yes, it seems that here in Los Angeles many of the doctors who are at the top of their fields convert to this kind of practice.

Now I find myself wishing I had the money, the golden ticket, to access this third level of care.  I'm drawn by the allure of better treatment that could potentially make a significant difference in my quality of life.  Granted, I don't think they could cure me, but from what I have heard, it seems like these upper echelon providers could reduce my chronic illness burden and help me regain some of the day-to-day functioning I have lost along the way. 

With all the hype, I have to wonder, 'Could being treated by one of these cash-only healthcare providers be the difference between living disabled and living more able-bodied?'

Unless I win the lottery or become the recipient of some fortune from a deceased distant relative, I guess I will never know.

So what do you think?  Can money buy you good health?  What is your opinion of cash-only or self-pay medical practices?  Are you able to access this top tier medical system or is the admission price preventing you from getting the kind of medical care they provide?  

Please share your answer to this Question of the Week below in a comment or over on the Oh My Aches and Pains! Facebook page.   

Bits and Pieces: Overwhelmed with Health Care at Day 12

This new year is only 12 days old and I am already getting overwhelmed by all the health care tasks on my plate.  Good grief!

On Monday I shared about the flare-up that has followed me into this new year.  Well, I went for a medical procedure Monday that only made it worse, yet again. 

I had no idea how much pain I was going to be in.  It hurt so much that I asked the doctor to stop what she was doing at the halfway point and convinced her to reschedule the second half for another day.  Thank goodness Robert drove me to this appointment, as I was in too much pain to drive myself home. 

While the pain caused by the procedure subsided in a few hours, being in that much pain reactivated my hip and low back pain and I have been miserable all week.  Thank goodness for my flare-up kit.  It's making a real difference in easing my pain and helping get through this ordeal.

Tuesday's BIG appointment with my hepatologist went really well.  I got a nice surprise too.  Seems that my viral load went down, from 24 million to just under 10 million.  I attribute the drop to the drug metformin, which I asked my endocrinologist to add to my diabetes care plan.  You can read more about the anti-Hep C effect metformin has here. 

At that appointment I passed another milestone: right now the paperwork needed to start Hepatitis C treatment is getting completed.  I anticipate that I will begin treatment in February.  But before then, my schedule is packed with additional medical appointments and things I need to get squared away before I go to battle. 

First of all, I need to get an eye exam before treatment.  With some nudging, the eye clinic staff was able to squeeze me into an appointment at the end of the month.  Over the past several weeks, I've also persistently pursued and obtained an appointment with a cardiac arrhythmia specialist for next week.  I am relieved that I will have a doctor on my team who can troubleshoot any potential heart-related complications from Hep C treatment. 

And at my dental cleaning yesterday, the hygienist found a cavity that I am choosing to get filled right away too. 

I wanted to see my pain management specialist too before my life becomes all about Hep C treatment, but I learned yesterday that she has moved to Fresno.  What a shock and disappointment that was!  After the shock wore off, I found myself a little miffed that she hadn't notified me of this huge change or attempted to facilitate the transfer of my care to a colleague. 

It seems like, once again, I have been dumped!  Aargh!

I found her completely by accident, a happy and fortunate accident.  Finding a replacement is going to be really hard--she was the only doctor I saw that was willing to consider all pain medication options for me, including narcotics.  What she prescribed for me is working so well during this current flare-up.  I need a new pain management doctor who will continue to provide me with this real and much needed pain relief.

Despite all the craziness, I haven't completely lost my cool.  In fact, I kind of feel lucky to have so many distractions keeping me from getting worried and stressed about the start of Hep C treatment just a few short weeks away. 

Isn't it funny how the Universe works sometimes...

In the Face of Pain: My Interveiw with Maggie Buckley (part two)

Selena: Let's talk a little bit about your own personal pain advocacy.

I read your biography at the American Pain Foundation website, so I know that your live with Ehlers-Danlos Syndrome (EDS).  EDS can include symptoms of  fibromyalgia, which is a condition I have as well.  I am wondering how you have been able to successfully advocate for yourself in terms of getting better pain treatment when you live with fibromyalgia.

My experience has been that fibromyalgia is a difficult condition to have when it comes to actually getting some pain relief. 

Maggie:  Yes, it is a challenge.  I think the challenges are with communication and knowing what your options are.  Part of that is examining any preconceived notions you have, like: 'This is what I am going to accept.' 'This is what the doctor is going to do for me.' and 'This is what I want.'

There is a delicate balance here: you know what you want, you know what you need and then you need to navigate the healthcare system.  Whether it's your HMO or you insurance company, maybe you need to get them to "sign off" on certain things. In a lot of states there is a "fail first" protocol where you have to do it "their way" before they will consider any specialized treatment.

The first step is becoming very clear with yourself about what is going on and outlining your objectives.  The next step is documenting your status quo.  A good place to start is documenting what your pain level is using a pain notebook.  I volunteer with the American Pain Foundation (Maggie is on their Board of Directors), so I'm going to recommend the APF's pain notebook.  It has downloadable PDF pages that will help you build a notebook, something that you can share with your healthcare provider that will show the pattern of your pain.  Then your nurse will be able to summarize it or highlight things for the doctor to look at.

Also, with pain care in general, some people are very narrowly focused on 'I need to take a pill to do this.' or 'I need to have physical therapy to do this.' or 'I need to lose weight to get rid of my pain.' There are a lot of people who, when they first get into a chronic pain situation, are very clear in their minds and have this image of  'This is what pain-free is going to be and what is it going to mean and how I am going to get there.'

Usually that is not the case.

So being open to the idea that there are six or seven different approaches to pain management, whether it is medications, injections, surgery, complimentary or alternative medicine, implantable devices and/or physical therapy.  It is most likely going to be a combination of approaches.

It is more about creating a recipe of what works for you.

So you take a little bit from this approach and a little bit from that approach and then you mix it together.  So maybe to start on the road to pain management you'll need prescription medications and physical therapy.  You'll need the prescription medications to get your pain down to a certain level so that you can actually show up and participate in physical therapy.  Maybe with an increase in physical therapy, the benefits from medications are diminished, so you add in something else like meditation, acupuncture or massage.

As you go along, you learn and get better at managing your pain.  So if you have an injury or setback you'll add something back in that worked in the past.  Patience is a big part of it, as is tracking your symptoms so you can present a full picture of what is going on with you and have documented proof.  It's also about having really good communication skills: not just being able to tell your story, but being able to listen and participate respectfully in conversations.

And finally, don't be shy about letting a healthcare provider go if they aren't giving you the support you need and working with you on your situation.  You are a consumer and it is O.K. to go find somebody else.


Selena:  That's a good point.  I know in my own personal experience it has taken going to several different doctors before finding a doctor that was really willing to look at all the pain treatment options and offer me something from everything available.  I found that there were some doctors who were only willing to go so far with pain treatment.  Once I tried everything they were willing to offer me, I had to go see someone different because there wasn't anything else they were going to offer me.

I am wondering if, through your advocacy work, this a story that you hear a lot and is this something that you are trying to change?

Maggie: Yes, with everything that I am involved with.  Using the In the Face of Pain website is helping me do this; it is one of many tools that I use.  Plus there are links on the In the Face of Pain website to medical organizations that are another tool you can use to help find pain management healthcare providers.

I think finding a healthcare provider is just like dating. First you meet, then you decide 'Well, do I want to see them again?' and 'What am I getting out of this relationship?' You might decided to break up with that doctor and start the whole "dating" part over again.  And it might take a second, or third, or fourth, or fifteenth round of "dating."  It can be very frustrating and it wears people down.

Contacting support organization for your particular condition, or similar conditions, can help. So for example, for people with EDS, I always advise them to consider tapping into support organizations for fibromyalgia, arthritis or heart-related conditions because those are all the symptoms and systems that are affected.

When you have exhausted the list at one organization, take a look at somebody else's list for ideas about who might be able to help you.  Sometimes finding good pain care means thinking outside of the box.

To be continued... 

Related articles

• In the Face of Pain: My Interveiw with Maggie Buckley (part one) (ohmyachesandpains.info)