What Can Rheumatologists Learn?

My youngest son’s best friend was diagnosed last week with type 1 diabetes.  I am amazed at the education and support the family is getting.  This won’t be a post about diabetes, though.  I’ve been thinking about the difference between how newly diagnosed diabetes patients are treated and how newly diagnosed RA patients are treated.

It’s pretty common for a primary care doctor to diagnose RA and write a referral to a rheumatologist.  Depending on the part of the country, there’s a 2-3 month wait until the rheumy has a new-patient appointment open (so much for early, aggressive treatment).  On the other hand, a kid diagnosed with diabetes is seen by a specialist within a few hours.  Obviously there’s a need for a new diabetic to be seen promptly, so doctors arrange their schedules accordingly.  Why can’t rheumatologists keep a few new-patient appointments open so that people can be seen and treated in a timely manner?

In theory, RA patients can benefit from physical therapists, occupational therapists, psychologists, podiatrists, and neurologists, but only learn about some of those options from online support groups, not from their doctors.  What a difference with diabetes!  At the hospital, a whole team of people introduced themselves, did some teaching, and explained how that particular specialty could be of assistance.  The family saw an endocrinologist, a psychologist, a diabetes educator, a nutritionist, and a slew of others, too.

understanding_diabetes_book3aThe diabetes educators wanted to talk to our friends’ entire family, and gave them a notebook to store all their handouts.  Our friends were given a little book to use for looking up the carb count on just about any food they might think of, and taught how to use it.  They were taught about diabetes and what they need to do to control it, then given a terrific book explaining all that information again so that the teaching gets reinforced.  On the other hand, RA patients receive… nothing.  Families are told… nothing.

Disease control is another area where there’s a huge discrepancy.  Diabetes patients are under control when they leave the hospital.  RA patients take 3-12 months, if they’re lucky, to get under control.

After my son’s friend left the hospital, he had a follow-up appointment at the clinic two days later.  The appointment was 3 hours long and provided additional education.  After an RA patient finally gets in to see a rheumatologist, follow-up is a 20 minute appointment in three months.

How easy is it for RA patients to contact their doctor with a question?  The endocrinologist seeing my son’s friend provided his business card with clinic and cell number on it, and emphasized that there is 24 hour support available; they’re to call any time they have a question.  The doctor explained clearly that after hours, there are nurses who stay up all night just to answer phone calls, and it is okay to call in the middle of the night.  There’s no need to wait for the office to open; just call.

Now, I understand that DKA is an emergency in need of immediate treatment; RA isn’t an emergency.  That doesn’t mean that RA patients don’t need and want information and some support to figure out how to deal with our new normal.  There are medicines that can help, and it is unconscionable to hand RA patients a prescription for something that might help in 3-6 months and tell us we’ll just have to suffer in the meantime.

I suspect there’s a lot that rheumatologists could learn from pediatric endocrinologists.  I also suspect that, in the long run, insurance companies would save money by funding education and prompt treatment.  What’s it going to take to make it happen?

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4 thoughts on “What Can Rheumatologists Learn?

  1. What a wonderful story of support. If only …. However it makes me wonder if JRA patients are treated with any more “new patient care” than adult patients? Thanks (again) for a very enlightning post.

    • Since my daughter is a JIA patient, I think I can address that. We were provided two links if we wnated more information – that was the extent of our education. One of those links was the useless and often inaccurate arthritis foundation website. The other was very general, and had minimal information about her diagnosis.My daughter thought she “just” had “enthesitis” and didn’t realize that’s a name for one of the types of JIA. First follow-up was 6 months. :(

  2. There does seem to be a black hole that RA patients go into after getting diagnosed. I wish there was more systemic support systems like with other diseases. The psychological toll can be heavy. Thanks for bring this to attention. Hope you’ve gotten some of the recent sunny weather. Andrew

  3. There has been a movement in that direction with the change from the pyramid treatment to the idea of early and agressive treatment but, yes, they have a long, long, way to go! And the insurance companies are certainly not on board. I think that we all know that a team approach is needed but isn’t forthcoming and education is needed but isn’t offered. A change could be a long way off.

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