Jo's Situation in UK

[Guest guest]

Jo,

Dear God, I'm sorry. I can fully appreciate your anger and frustration over the

incompetency of this medical professional

IF he can even be called a professional, especially when you are suffering and

in pain. Is it possible to contact the geneticist on you own and tell him what's

going on with the GP. Perhaps he could intervene. I certainly hope someone in

the UK EDS support group can help you to find someone else to treat you. I know

how traveling can be difficult but it sounds like you really need to get someone

who knows more about EDS. Also is there a local review board to whom you could

turn?

Another thing I have found helpful is to keep a diary of all his medical

treatment. Write everything down. Cataloger all the times he has failed to treat

you, his attitude toward you, the hypochondria letter he sent to your OS and how

this has affected your health and treatment from that professional etc., etc. Do

you have a written report from your geneticist? If not you can you request one.

I guess what I'm saying is to start building your case. I would also request a

copy of your entire file from the GP. That should rattle his cage.

And get one from the OS as well. Since it looks like you are going to have to

build a case you might as well start by getting copies of all the medical

records. And if they want to know why you want them, I'd tell them just

that... " Since it looks like I need to start proceedings for building my case... "

Sorry, to be so long winded, but hearing about this kind of thing makes me so

mad. I wonder, since your GP thinks your a hypochondriac, why hasn't he referred

you for psychotherapy? If you see a psychologist and explain all this to them,

perhaps you could get them on your side??? Just a thought. By golly, if if my

doc describes me as nuts then isn't it his responsibility to recommend treatment

for that? Since he doesn't seem inclined to treat you for anything else, it's

the least he can do. I'd say sign me up!!! I bet when the counselor hears all

about EDS, he/she will be horrified. Make sure you give them a copy of all EDS

material and a copy of your geneticists report.

Hope this rant gives you some ideas if nothing else.

I'll keep you in my prayers,

Robin

US