ALS clinics

[lgelb]

This is a followup to TomsWife's saga re establishing care and Nikki's MGH account.

First, when you go to clinic, each clinician (doc, RT, PT, OT, neuropsychologist) can bill separately.

Sure, pretty much all academic medical centers rely heavily on philanthropy because of how poorly medical education/Medicaid is funded, but that is not ALS-specific.

All clinics -- ALS or not -- have non-billable personnel, medical equipment that the health system or medical group buys in bulk, etc. ALS clinics have less in terms of diagnostics to buy than most. And, as fractional FTEs to the ALS clinic, clinicians are paid through patient care billing and grant/contract/endowment support well beyond ALS, and/or drawing faculty salaries via state or university funds.

SCI, MS, MD, COPD, CHF, cancer, Parkinson's, Alzheimer's, obesity, and numerous other conditions also require multidisciplinary care and the patients generally live a lot longer than PALS.

I worked in academic and health systems and managed care, including on the financial side. Color me unsympathetic to the unexceptional financial plight of ALS clinics, which frequently display the worst traits of the health care system, while claiming to transcend it.

 

[Nikki J]

It is true that pts for example can bill separately. Mgh does not do that. The stated reason was many patients have pts nearer their home that they use and billing from two pts in a close time period would cause insurances to object. I don’t know it would happen but that is what the pt said.

as I said in the other thread it was completely wrong and unprofessional to tell a patient that even if it is a true fact. There are bad clinics ok clinics and great clinics. I don’t know how many fall in each category. Just like there are bad ok and great single practice clinicians except a clinic has more parts that have to work correctly

 

[Tomswife]

Thanks lgelb. Our second clinic meeting will be Nov 17. The first was Sept 8. December was booked, and I refused mid January. I have learned a lot, and still have more to learn.
I learned that no one there will anticipate our needs in between the clinic visits.
The people most helpful are this forum and the ALS Association NY Chapter.

It is the clinic's role to understand and anticipate Tom's needs. But I no longer trust them. So i am creating a list of topics for clinic meeting November 17 just in case.

I am wondering if (and this is a negative thought) if the clinics are designed to control and lessen the demands on neurology, pulmonogy, and other practices. Meaning, the purpose is to lessen demands on the rest of the hospital? We are controlled by a system/process that will assess Tom every 3 months. But every month things change.

I have been told by ALSA that we are free to go to any HCP at any time. And our PCP internist has said he will support us.

When I worked in information technology, I managed many projects. You had to know who is driving the bus. When we started this journey I was so excited to anticipate that the clinic would drive the bus.
Nope. I am the bus driver.

 

[Tomswife]

I want to add that the doctors in ALS clinics are often working on clinical trials. I know our doctor is involved in clinical trials, and also testified b4 the fda re amx0035. That is the good that is being done.

 

[affected]

I don't know why this is suddenly off topic but @Tomswife you are spot on - you are the bus driver. Only you can anticipate Toms needs and coordinate the 'team' you put together. They may end up a mix of clinic and community health professionals. You have your own criteria for your personal needs, and never feel you can't decide who to deal with and who not to.