PIA site has closed

[mali42]

I just looked and the PIA site and it isn't their anymore, I wasn't sure if the forum would stay open as a recent letter said its site would be maintained but no mention of the forum.

I think it would be a good idea to give the details of this new site to our clinics when we visit to give to the newly diagnosed somewhere to go and get support which we all need when first diagnosed.

Ha ha just did the spell check and no spelling mistakes (first time for everything)

[john]

hi malcolm,
just back home and there it isn't (pia site)!!
don't wanna say i told you so, but i told you so!
i have told my clinic already about the new forum, and i do think it's a good idea if we all do.
hope you're well, my latest stinker is fading fast, get my juice tomorrow so that shoild see it (or me) off.
take care - john

[liz2mac]

Hi all,
I've been looking into the PIA as a pre-cursor to formalising UKPIPS with the charity commission (we can't have the registration if another organisation appears to already be doing the same thing) I found out two things: when they changed their governing document they became a private limited company in 2004, they also changed their objects. Originally they had the words "health" & "welfare" in the objects. In other words they wanted to look out for us both as far as our medical needs were concerned and how PID affected us in every area of our lives. In December 2004 they took out all references to "welfare" and "social welfare". So if we felt that they didn't care about anything but fundraising for medical research...............maybe they didn't.
UKPIN, an organisation for DR's & Nurses working in Primary Immunodeficiency, is now trying to organise a new "patients" organisation. If you want to know more do contact Dr David Edgar at UKPIN (got it's own website if you google it) Apparently he set up a steering group to advise him how it should be set up. This steering group included C Hugan, D Webster.
Myself, I feel that "patients" probably know a bit more than anybody else what they need from an organisation to look out for their needs..................................................
Liz.

[emsy]

Hi Liz

does this mean that if UKPIN is being set up you wont be able to register UKPIPS?

[liz2mac]

Hi Emsy,
Not at all. We're still working on UKPIPS & the website will be up asap. All going well by the end of the w/e. It will be small at first but will grow as we do. The registration of UKPIPS will not be hindered by UKPIN who are not a charity themselves but are "part" of the Association of Clinical Pathologists. I'm not sure why such an organisation thinks that it is ok to dabble in "patient" affairs. I think it's a conflict of interest. However, I feel that each one of us who is living with a primary antibody deficiency should be able to make their own decisions about how they wish to be represented. UKPIPS is going to be one choice, run by us, for us. It's amazing how many skills we "patients" have to offer!
Liz.
Liz.

[slf]

Liz
I am so releived to read that,I really think you are on the right track
Steve

[liz2mac]

Thank you Steve. I feel it is only right that everybody on this site knows that other people are trying to set up a group as well as me. I believe that we should have free choice about who represents us and how they intend to do so. That is why I have given you enough details so that you have access to what I have found out.
Liz.

[mali42]

Liz
I agree with Steve and thank you all for setting up this new site, I'm looking forward to seeing the outcome.
Malcolm.

[john]

hi al,
thank you liz for taking on this task.
i really admire your guts, determination and skills.
i don't know if anyone's noticed but the pia website has miraculously reappeared!
the same old publications are available, they are still crediting themselves but have not continued with the forum. which is a shame really because in 7 or so years of high activity there is an awful lot of knowledge invested in that forum that is now presumably lost forever to those who put it there!
oh yes, and they would still like website visitors to consider donating money to them, although now the office is closed, goodness knows who would actually process any donations!!
keep warm and take care john

[liz2mac]

Thank you all, I'll keep you posted.
Liz

[kallista29i]

It's interesting to note that not only have they removed all the info links from the left hand side of the page but they are still writing about their succesful introduction of the HAE emergency card system. I contacted them after waiting for months and despite filling in forms and sending photographs I have received nothing, not even a reply. Am I the only one who was treated like this, or are there others out there in the same position as myself?
I know HAE is not the only PID, but the forum and the travel insurance links were a godsend to me.

[mali42]

That is bad they only closed a month ago and should have replied, their is nothing worse than waiting and not getting a reply.

[liz2mac]

Hi all,

I don't think there is anybody who can reply! The website is up only because UKPIN put it there (see my post UKPIPS) If you wanted to ask anything about it I guess the person to contact would be DR Edgar at UKPIN as he's the one who's put his hand up to "enable" the website to continue ti opereate despite the PIA closing.
Kallista, I thought HAE had set up an independant group? Are you in touch with them?
Liz

[john]

the pia forum was the best thing to come out of that organisation (IMHO), and it helped many people who were isolated and those who didn't have access to immunologists or the funds to pay for them. i think that closing it down with all that info stored on it was an act of pure negligence!
however hopefully we can get something as good happening here, we all just have to plug away at it and spread the word to whoever needs to know about it.
talking specifically about hae, i am still in touch with many of the hae folk i got to know before "retiring" from the pia. there is a facebook group, "HAE UK Association", which is new, active, helpful and informative, and there is the organisation that broke away from the pia a year or so before it folded, and you can find them at www.haeuk.org. i'm sure you will find many familiar names at these sites, and it will help you.
efficiency and good manners were never a strong point latterly at pia, you won't find that missing with the new organisation!
take care - john