Re PAI, Internet and Physicians

[Guest guest]

Just wanted to add a word about this.

I have found a positive response mostly to the fact that I use the

net and support boards to further my own understanding of my

illness. In fact, I once found a particularly excellent article for

my own case which was the consensus view of pancreatologists the

world over on monitoring for cancer in patients with hereditary

pancreatitis. When I showed this to my gastro, he was really

interested, said he hadn't read it and asked if he could keep my

copy.

My own pancreas specialist actually wrote the information booklets

for a British-based support site which I use and has spoken on a

couple of occasions to the group. My docs seem to see the idea of

support groups as broadly helpful. They realise that people need

emotional support in facing the disease as well as sources of

information.

I found that Jim's consultant fully expected him to have researched

prostate cancer through the net, which indeed, he had!

I think it is good for doctors to know that many of us are informing

ourselves; it means they have to keep really up-to-date themselves!

A good specialist should have nothing to fear. My own docs have

actually directed me to certain sites and articles and the Europac

coordinator has actually added a couple of useful links to the

British site I referred to. Patients in my local hospital are

directed to this particular support site.

On the other hand, it is also true that one can get some incorrect

ideas from certain sources and it must be irritating for a real

expert to have to listen to some of these sometimes! It's a question

of using the net wisely. The PAI makes it clear that it doesn't ever

replace qualified medical advice and I personally have found this

site to be invaluable in allowing me to share other people's

experience as well as accessing so many useful sources of info.

Thank you PAI!!!! Thank you everyone who uses it!

With warm wishes,

Fliss (UK)