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Poohbear

The Future Of Our Medical Care--Anyone Else Feel This Way?

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I have been diagnosed and dealing with POTS/Neurocardiogenic syncope for 20 years but it's only been the last 10 that I've been followed by "true" autonomic specialists.

I've recently lost the one specialist who was most helpful to me for many years (that person left the country).

I look at some of the well-known centers and I am fearful for the future of our care. 3 of the 4 autonomic Dr's at Mayo MN are retirement age or past it and 2 or 3 of the autonomic Dr's at Vanderbilt are in similar situation and these centers don't seem to be doing anything to add younger Dr's. who are going to be there for us in the long haul.

Does anyone else see this as I do? Anyone else worried about their future care? Anyone out there have any 'inside' info on whether these existing programs intend to remain strong and add staff??

Sometimes I feel hopeless about the future (in the regard to knowledgeable, helpful, medical care) because after all these years there are still so few Dr.'s that truly understand these disorders or how it effects our quality of life.

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I have worked in the medical profession for over 30 years. I do not like the trend I see in medicine today. We are moving to medicine that provides "the greatest good to the greatest number" - the resources will be allocated to cover the most people and be withheld from the ones that cost "too much" - only the "haves" will be able to obtain expensive or experimental treatments - the "have nots" will only receive basic care and nothing else. Specialists will be few in number as there will be no incentives for physicians to specialize - in fact, there will be penalties for not providing watered-down care to mass numbers. Most healthcare will be provided by "extenders": PA's, NP's, and Med Techs. Few large centers of care will remain open as their funding will be decimated. On the other hand, drug companies, medical equipment suppliers, and the like will make huge profits. The only available health insurance source will contract with large companies to provide services and these companies will clean up - the profits will be astronomical. (Remember the cost of the Pentagon wrench?)

Some will think I'm merely cynical and jaded however, I have already seen the changes begin and it is not pretty. Look at the drug "shortages" that occur every week - the lists are on the FDA website. These drugs are no more in short supply than hot weather in the South! The supply is being controlled to drive up costs and increase profits of drug companies - at the expense of the patient and unfortunately, at the expense of saving lives.

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I do not like where we are headed either. It is one of those, be careful for what you ask for.

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I totally agree with what you are saying. I clearly see it here in MN. For over a year there has been a huge undertaking and planning for Rochester--Mayo calls it 'DMC' short for destination medical center and the whole focus is on wealthy cash-paying customers (many who come from overseas). They say it's because they will be getting less money from insurance so they are looking to make it up somewhere. I've seen many changes here this past year many of which, like you, I believe are not good for many people. It's a lot of greed driving things and I think we are just digging our own grave as a nation the way we are headed.

You are right...it's all profit driven and that is true everywhere. People are always surprised when I point out that for a long time now this clinic here has not had a muscular dystrophy clinic. Why? It was costing them too much. There are a few of the Dr's who were in that program that stayed but many of the services went away when they got rid of that clinic so now those patients have to go to Minneapolis or somewhere else for care.

It's just sad and it scares me to think what will happen when all these great specialists retire.

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Oh....and on the drug shortage issue.....there's a shortage of normal saline. Why? Because there are only a couple of manufacturers and they say the profit they get for producing it is so small that it's not worth it to bump up production. Makes me furious because it's such a simple but life-saving medical supply and these phamacutical companies should not be allowed to let this type of shortage happen EVER on such a supply as this.

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I am very concerned and have been for a long time with our healthcare system. Many of you have struggled to get the medical care that you need and still do not have it yet. We need better healthcare for everyone no matter what their age or their heath issues may be.

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Is this why (maybe no one else has this happen to them) everytime I see a neurologist or my vascular pots specialist, they always say 3-4 months for follow up? I feel like somehow it is written in my chart 3-4 in big red letters no matter if I am doing better or going downhill fast. Also, the exercise physiologist kept checking his computer (3 times) when I inquired if I am supposed to follow up with him. I kept wanting to ask what he was looking at. He said no follow up after looking at the computer and now I am thinking he was looking to see what insurance I have. Maybe I am paranoid....or just psychic. Lol!

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In regards to the number of doctors, I was always happy to see our autonomic specialists always had interns with them training them about autonomic issues. Every appointment we had with Dr's Chelimsky (when they were in Cleveland), they had trainees following them. They always asked us if it was okay to let the other doctors listen in, and we always replied with 'Absolutely!' The last couple of visits with our local specialists, he too had interns he was training.

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I am optimistic. i've had POTS over 10 years and it seems like patients are banding together more than ever to raise awareness. The discussions on forums like these seem to be a lot more in-depth and scientific than they used to be. Hopefully as the world learns more about POTS, it will become easier to diagnose and treat.

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I think forums like this are good and that there is more awareness in general over the years but I don't see many Dr's training and treating these disorders and I don't see the 'specialty centers' (as a whole) taking steps to add or replace the experts, many of whom, are near retirement.

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