Re : Knowledge is Empowerment

June 15, 2004

Hi Karyn,

Your post really struck a chord. I'd been telling Chrissy about how

hard it is sometimes to get the info one needs but I thought it was

just a problem here. I have had so many tests done without realising

it! I mentioned my raised ESR level to my gastro yesterday (my GP

had written to tell me about this following recent blood tests but

without giving me a figure) wherupon he coolly looked through my

file and told me it had been 30 last year! I didn't even know it

had been tested for. (Incidentally, he said the condition of my

pancreas was quite enough to explain that rise.) I also asked about

the possibility of a blood test for coeliac disease. Again, he said

he was sure I'd had this done recently. I had......over a year

ago!! But I didn't know!! Similarly, last time I asked about the

C19-9 tumour marker test...and yes, you've guessed it! I'd already

had it but as I'm only the patient ( a sort of irrelevant little cog

in the National Health machine!), nobody had told me! Actually, I

really like my gastro and he answers all my questions very fully

indeed but it doesn't seem to be the common practice always to tell

the patient much more than he or she asks about. I'm not

complaining. My pancreas specialist has actually given me copies of

his own research articles as they affect my condition and, again,

answers all my questions in great detail. He's also given me links

for other relevant articles and websites. He even asnwers my e-

mailed questions.

It's just that if one has tests, one would like to know and be given

the results! I think it's mainly with the blood tests....they do a

whole battery each time and don't always tell you things if they're

not, in their view, essential knowledge!! Certainly if things are

normal, they probably don't always think it worth mentioning!

Well Karyn, PAI is a major way of improving our own information and

keeping us in touch with research as well as helping us to share our

experiences. It's invaluable. Thank you!!!

With very good wishes,

Fliss (UK)

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