There is a tumor in my mouth.  It has been there since the end of November, and I have yet to have it biopsied or removed.  There are many factors involved, including:

• Delay in referral TWICE from my dentist’s office
• A referral to a provider that’s not accepting my dental AND medical insurance
• A seemingly lengthy medical review process
• Limited number of providers who can assist with my problem, creating a scheduling delay

In the meantime my tumor has progressed and what seemed like a simple situation has turned into one where I have tooth bone loss and an uncertain prognosis.  Already I have seen multiple providers and not all of them seem to know what they are talking about.

I happen to work in the healthcare field and know a thing or two about what it takes to get access and follow through with both preventative care and treatment for illness.  I understand the system, have good insurance, and know how to advocate for myself, but yet I feel the pain of trying to use the healthcare system.  There are reasons some people fall through the cracks or don’t do what their providers ask of them.  In healthcare we call these patients “non-compliant”, as in, “Jeff is non-compliant—he hasn’t seen the specialist we referred him to for his abnormal labs.” Or, “Susie hasn’t been taking her asthma inhalers as prescribed and has been non-compliant with the treatment plan.”  Yes, there is judgement involved.

As a nurse it is hard to always objectively see the obstacles to a perfect treatment trajectory.  Once we recommend something to a patient we like to sit and wait for them to do their part, to see the next specialist, take the next medicine, get the next test done.  We like to think we can only lead the horse to water, and can only reasonably convince so many horses under our care at once to drink with the resources we have.

But when I am on the other side of the exam table I get it—I really do know from experience—as a mother and a patient what those obstacles to healthcare are.  In order to improve health we have to have access to people and tools to help us, follow through on testing and interventions, and maintain new habits and routines.  The stars must align in the following ways:

Access

• Provider Availability
  • Proper providers accepting new patients
  • Specialist referrals happen when needed
• Affordability
  • Able to pay insurance premiums, deductibles, copays, coinsurance
  • Straightforward billing and payment options
• Convenience
  • Location
  • Reasonable waiting periods for appointments
  • Appointment time slots available (minimizing lost time at work or school)

Follow Through

• Open communication between provider and patient
• Thorough education provided on what is happening and what to do next
• Continuity in providers
• Trust and rapport in the care relationship
• Motivation of the individual—seeing value in therapies

 Maintenance

• Incorporating new habits and routines
• Long term monitoring for chronic or high-risk problems
  • Appointment reminders
  • Care coordination between providers, specialists, and therapists

 

When things go right there is a balance of “providing” (done by practitioners) and personal responsibility (of the patient and their caregivers). There is a dance of expectations by both parties, and many times those expectations are not met.  Sometimes it is the nature of the system that creates trouble, especially when it comes to access, but there are ways to help ensure you are getting what you need.

See the best providers available

Get recommendations from friends or screen online reviews. Don’t be afraid to ask for special permission if you are told that a provider isn’t taking new patients.  They may make an exception if you are related to or know a current patient. Find a different provider if you aren’t meshing well with the current one.  If you have a rare or hard-to-manage issue try to find someone who has experience with it.  Use your insurance company as a starting point to find providers in your area who fit your needs.

Understand the workings of your health insurance

What is covered and at what rate? Who do you call if you have questions?  Insurance companies can actually be very helpful in preventing costly mistakes—mine once helped me clear a $1400 charge that a hospital was wrongly trying to collect from me.  Sometimes insurance companies make mistakes too, and if you know your coverage specifics you can argue or appeal items not paid.

Contact billing if you are having trouble paying

Payment plans can keep you out of collections. Providers can end their relationship with you for non-payment, and if you aren’t hiding from your bills you will be more likely to follow through with appointments and tests.  Don’t forget to ask for itemized bills to ensure accuracy.

Maintain the care conversation

Call and call again if you have to. Ask for what you want and be open to negotiating.  Let someone know if you don’t understand or need more information.  Be honest with your providers and expect the same from them.

Keep your promises

To yourself and to others. Do your best to attend recommended appointments and tests.  Take responsibility for your health and the things you can directly control.

Don’t give up even if it seems near impossible to have health care without obstacles and glitches.  I anxiously await my appointment with the oral surgeon for my tumor. And I’m sure this won’t be the last point in a chain of custody for my health that will bounce back and forth between the sides of the medical court, me on one side and “the system” on the other.  (But wait…I’m part of the system.  Does this mean I am playing against myself?  Too deep for me today.)