P.I. Week

[liz2mac]

Hi all,
it is international Primary Immune Deficiency week starting on Saturday. Please can I ask all of you to go to the website, download the power of ten poster and take it to your G.P.? We all know how long it has taken for most of us to get diagnosed after we first get ill. This poster is to remind General Practitioners about the signs they should be looking for. Whilst PAD is rare, I wonder just how rare it would actually be if everybody with a PID or PAD was actually diagnosed. Lets do everything we can this week to make a difference to people still in that twilight world of illness without answer. If you contact the Practice Manager of the Surgery and explain about PI Week and our need to improve diagnosis, hopefully they will put the posters up in the Staff room of the practice. Its a small step, but even if we get one person diagnosed because of it, its SO worth doing. If you're going for an outpatient appointment at your chest or ENT clinic, maybe you could take a poster there as well?
Thank you all, lets rescue those zebras who don't know they belong to our herd.
Liz
Liz

[mali42]

Hi Liz
I have just delivered the power of ten poster to my surgery.

In my surgery there is a Patient poster board which I have read many many times waiting for my appointments and I think it would be a good idea to put the ten warning signs on a poster so patients can read it while waiting.

Malcolm

[liz2mac]

Hi Mali,
Well done for getting the poster in. As for the poster for patients , I think this is an excellent idea. I think it would probably be best to break it down into two, one for adults who may have a PID and one for parents whose child may have a PID. What do you think? Lizi has suggested that we use the Zebra idea for the poster to make them stand out from the crowd and make them more memorable. What does everyone think? What else would you like to see in poster form to go either in our specialist centres or else in other places?
Liz
Also, I think it would be great if every time one of us manages to get a poster to a GP surgery we could post on the UKPIPS facebook site to say so. It would be good to get it on twitter as well, but I'm SUCH a technophbe I don't know how to do it (sorry Steve's)
Liz

[liz2mac]

As you may know, some of us who are treated in London Centres are going to a meeting tomorrow. As far as I know there will be at least six of us from this forum if not more. Sadly I didn't manage to get a stand for UKPIPS, so we won't be able to have a display of our posters an leaflets. However, John & I will be bringing leaflets with us and also badges with the UKPIPS logo on them. Would any of you who are going to be there be willing to wear a badge, give out leaflets and generally talk to people about UKPIPS? I will loiter with intent around the registration table at the beginning of the day. We intend to be there for 09.15, but we know what happened last time we tackled the motorway system........................
Look forward to seeing as many as possible of you tomorrow.
Liz

[mali42]

Hi Liz
I think one poster would be ok similar to the power of ten but maybe a warning in red at the top saying 2 or more sinus, chest, or ear infections a year check out this poster, or something similar.
Then children and adults side by side like in the power of ten with the most common ailments at the top,

The Zebra idea is a good one and should be memorable.

Malcolm

[john]

hi liz and malcolm,
the zebra idea is good but not new, idf is already using it big-time
visit here and see what i mean
primaryimmune.org/take-the-zebra-challenge/idf-store
they may let us in on it though??
anyway, don't think i'm being negative!!
see yas - john

[slf]

Hi Liz
Hate to report a setback,but my GPs surgery,refused them as not nhs,rather typical birmingham pc I think.
Sorry
Steve

[liz2mac]

aha, think we may get this from place to place. What a pity. Ok thanks for trying Steve.

[emsy]

Yeah I think some of us may get a similar reaction as many places will only put up PCT approved stuff so its not just Birmingham Steve. However, there will be plenty of other places that will display I'm certain. Another obstacle we may get is that many places are going down the cleanliness route and wont put anything up on walls that is not wipe-clean, so if anyone has access to a laminator it might help.....