Furious....and scared

[ViewsAskew]

I hope that one of our newer members read this thread. This is about how hard it can be to work with practitioners, how easy it is to be misunderstood, and what we, as a group, are thinking of doing to help practitioners better treat and understand us.

[Polar Bear]

I just had a thought, well a silly spark of an idea ------ - in order to make ourselves understood as far as possible with doctors, I dream of a proforma document/letter/whatever..... that briefly stated the symptoms of WED, briefly described augmentation, stated the medications that DON'T work, those that sometimes work, and those that are pretty sure to work.
Citing for instance Dr B's book and extracts thereof. And briefly described the horror of living with WED and the subsequent impact on all aspects of life. At each of these brief sections there could be a couple of lines underneath so that a sufferer's personal and specific comment could be added. Something as concise as possible and to the point.

This way a lot of information could be detailed for a doctor who was not really WED educated and may not know the questions to ask. And also help a sufferer to give information without waiting to be asked the correct question by someone who didn't know what question to ask. (am I making sense??)

And then a brief section to be filled in by the WED sufferer (perhaps the front page) regarding sleep pattern, symptoms pattern, meds tried and the success or lack of success.
(Because docs never get to look back over files to get the proper history). And other medical and/or related issues that could be relevant. Filled in before the appointment.

I've said 'briefly' a lot. But sort of got carried away. A short 10 minute GP appointment as provided here in the UK would never work.

As I said..... just a flash of an idea.... in an ideal situation.
Hmmm... an ideal situation would be a Doctor who knew what he/she was talking about

[ViewsAskew]

You are making sense.

It could be an online form, maybe, with both information for the doctor and information from the patient as related to it.

[Polar Bear]

Exactly

Sometime.... a little bit (a lot) of spare time.... the relevant information could be cobbled from documents already published by the Foundation and then reduced as far as possible without losing anything important. Thing is .... we are all up to our eyes and busy, but something to think about.