National Patient Support Group Meeting in Belfast

Hi All

The Nets team have received only a few responses to the National Patient Support Group Meeting in Belfast on the 7th September. So if you wish to attend can you please let them know ASAP, as they need to confirm numbers for refreshments etc, otherwise the event may be cancelled.

Regards

Roy

Just registered via email so hope they get it ok! Was waiting to see how I was feeling, I do hope its not cancelled!

Hi All,

I realize that Belfast might suit some but I would find it rather an ordeal to travel there.

Hope that it can go ahead for those that can get there.

Regards

Gill

Apparently theres been good uptake of us going and they have some excellent speakers.

I know how difficult it is for us to commit and travel, I have to do it the other way,NI to England. For any of you making the meeting from across the water the airport is about 5 minutes from the city and the hospital on a direct route on the outskirts. For those unable to go any questions needing answered I could arrange that. Or if you need any travel details etc please ask me.

Maureen

Hi all
I received an invitation through the HEALTH CARE TRUST yesterday, thought this was a good idea and wondered why it hadnt been done sooner.

Hopefully it will go ahead!

Hi Maureen

Maybe there'll be a chance to ask about this website and forum during the meeting? It would be interesting to find out who oversees the forum and whether they could provide a contact email button - so that users can alert them to inappropriate messages about golf and computer games and such!

[We probably don't need an abuse alert button like they have on Bebo - hardly seen a bad word ever on this site, and certainly no signs of grooming for dodgy doings.]

This would be useful as its hard enough to keep track of who's saying what to who at the best of times; and when you get discussions that obviously belong to some completely different group its virtually impossible.

Its very correct that our hosts concentrate on more direct ways of helping people, but this forum does provide a bit of support and help as well (and apparently to a lot more people than just those who post) and it does look like it needs a bit more active management.

Bye for now

Good posting David,

How sensible you are, I just want to say "I dont believe it". Is it an error on their part or just sent to be disruptive. I just wish that they would desist.

Ive not clicked on to the hi lights but wonder if that would introduce a bug into the computer?
Does anyone know?

Best wishes to others on this site,

Gill

Hi everyone, Couldn't agree more David. I for one find this forum so very very helpful for me to understand my Dave's carcinoid. To hear of the problems that others encounter and how they have got over them is such a help to me. And it's really nice to have people post good news too because that is also so important and gives everyone a much needed boost.

Best wishes to all those attending the meeting in Belfast and do hope you have an interesting and informative time. Let us know how it goes.

Gill (and everyone) I have always had it instilled into by brain by our son-in-law that you should NEVER click on anything that you know to be irrelevant or you do not understand, just to be safe. I shall ask him tomorrow if anything can ever be done about these silly intrusive messages that keep coming in, as he is a software engineer who "invents" very complicated and technical programmes (there is probably a much more technical term for it but I don't know it!)

Regards to all
Jenny

Hi everyone. Found out today that these silly messages that keep coming in are almost certainly generated by a computer somewhere in the universe set up by someone who then leaves the computer to run on its own. The computers trawl the internet finding forums on which to basically advertise themselves in the hope that someone will click on one of the links. PLEASE DO NOT CLICK ON ANY OF THEM! There is always the risk of something being sent to your computer. Very much like the spam emails.

Evidently the computers can even read and set up to become members of a forum, by doing everything that we have to do to enter the site. Unfortunately, there is little that can be done but I suppose it helps to know that it is just a computer and not anyone being malicious against NET patients! The messages just need to be deleted as soon as possible when they arrive.

Hope that bit of info helps. Pleased to see that the meeting will be going ahead in September for all those who are able to make the trip.
Regards to all
Jenny