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me again I should change my name to moaner!

I am at the moment going through a tough time, lots of tests and back and forth to various Professors.

It transpires that my professor charges double what anyone else does, last year my company changed insurance providers - the last lot were great, long term illness covered and they just paid the bills. Last night I received a note, from the new company that they would only pay half of his bill, I have managed to get them to agree for the last visit I went (lucky for me they forgot to quote the standard clause, they are always meant to quote) but now I am waiting for confirmation they will pay for the next consultation, all my tests are covered but if I can't go back and get the results what's the point. I am just about to start 10 days without medication, and this is the last thing I need right now.

Should hear back from them later this afternoon so I guess I just have to wait.... I am fed up with this whole POTS thing, I finally find someone who can help and I may not be able to go and see him. I could see him as an NHS patient, but the waiting list to get on his list is as long as the UK, I'm hoping he will push me up, as I am such a special case.

Anyway sorry to moan, I've not been about much lately and feel terrible because I haven't had time to read many of everyone else's comments - hope everyone is doing as well as they can

louby x

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I'm sorry but I'm wiped out, just got home from work, so forgive me if I ask a stupid question. Will your insurance company not cover the provider or would they only pay half of any professor that you see?

If it's because he's not covered on the plan, then you can state that you must see him as a medical necessity. That you have a rare chronic illness and he is one of only a few that can manage your treatment.


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not sure where abouts you are, however in the UK everyone is covered by the NHS, and can be seen for free. The trouble with this is, that you can be on waiting lists for years to see the few and far between experts, and can be waiting for ever for tests and surgery etc.

Most big UK companies offer private health care schemes, which means you pay a small premium each month (well actually not that small) to haev the peace of mind that should anything go wrong you can be seen by the best and quickly. However, they don't cover for chronic illnesses, I am just lucky as i haven't been 100% diagnosed (to extend the benefit) they also have hundreds of caveats, as to the amounts they will pay - however they never tell you this until it's too late.

I have just heard back from them and they will cover any tests i need, and they will pay for the last visit because they said they would, and did not warn me of the we only pay a certain fee, however they will not pay the full amount for my next vsist becasue my proffesor charges twice the amount, so i now have to speak with my lawyer/HR rep here at the company and hope she can do something.

It looks like i may have to be added to the NHS waiting list, which means i will have no contact with a specialist until i am at the top of the list - thsi could take years.

Good news is that they will cover my rheumotolgist for my first visist, as he doesn't charge quite so much.

It is so frustrating, as Proff M is the only person in the whole of this country who is qualified to help me. I haev explained to them that he is the only person, and that it is a medical necessity, they don't care as it's not covered by their policy

I could scream...

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Thanks Steph,

what i am finding most annoying is that my last insurance company (my company changed, insurance companies to save a few bucks...) covered everything, and were fabulous.

this ones attitude is - thats what we pay, so what if you have a really rare condition and that you can't see anyone else, go and see someone who doesn't cost so much.

I'm sure if i'm sneaky i can work my way around it.

It just couldn't have come at a worse time, it never rains but it pours (V.Bad week at work too)

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Guest tearose

This is awful to have to deal with on top of the pots and on top of all the testing you have lined up!!! Even here in the USA, dealing with the insurance company can become a full-time job. Try asking the professor if they can help you navigate through the system since it is also in their "interest" to have you use their services. I don't know what else to suggest. I am sorry for all this additional agrivataion you have. Keep your spirits up! Don't let this drain you of your good energy. It is hard but you need to keep your strength. Sending hugs and of course from me...scones and tons of heaped up devonshire cream. Love, tearose

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Ummm cream and scones - gosh how i could do with some of those right now, still i have my can of diet doctor pepper!

I could just burst into tears at the moment, but i'm trying to keep smiling at least i have 10 days at home, to catch up on all that reading. it's a nightmare, i am usually quite a stable human being, but a couple of things happen and i turn into a wreck. (well maybe just this week, i am being over dramatic again..)

My boyfriend keeps telling me that the proff, is likely to want to keep me on, even under the NHS as i am such an interesting "project" for him... he does sometimes treat me like a project, but that is a good thing i think.

We shall see, i am glad that I have you guys to keep me on track

(PS - off to have a pamper session on Saturday, prior to the tests, which all start on the 1st April at 09:30!)

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Sorry to hear of this latest complication. It must be especially hard since you have found someone who can really help you -- that is something very hard to come by. I second the idea of asking the Professor and/or his staff to help sort this out. If he has a real interest in your case perhaps he might be willing to continue to support you at a lower cost. It can't hurt to approach him. I'll will send positve thoughts across the pond in hopes that a solution can be found.

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