visits to centres

[liz2mac]

I've been visiting some of our specialist centres over the last few weeks and I'd like to say a BIG thank you to all of our Nurse Specialists who put so much of their time and energy into supporting us and keeping us as well as possible. Whilst getting our regular infusions is SO important, if we didn't have our nurses to turn to in times of break through infections, problems with home delivery of immunoglobulin etc, I hate to think what life would be like. As for our Immunologists, well, life without them would be totally unbearable wouldn't it?
Three cheers for our wonderful Immunologists and Immunology Nurse Specialists.
Liz

[glowing]

I second that!
Glowing

[liz2mac]

Hi all,
John and I are in London for a meeting tomorrow and Cambridge for a couple of days Tuesday evening until Thursday midday.
I'll be picking up UKPIPS emails, so get in touch if you want to see me whilst I'm in Cambridge.
Liz

[gilliem]

Are you going to visit Bristol any time soon, Liz? We're lucky enough to have a good team of immunologists and lovely nurses here, based at Southmead Hospital but I don't know how clued up they are about the set-up post PiA.
Best wishes,
Gillie.

[liz2mac]

Hi Gillie,
I'm slowly getting round to see as many people in as many centres as possible. I'd love to come down to Southmead and meet you and your team. Could you email me on 'A PID Organisations Email' & we'll look at some dates that are good for both of us? Once we've done that, I'll try to make an appointment with your team that we can both be at.
Liz

[prickles]

I have to say that some members of the team at theBristol Children's Hospital do not seem that clued up just kept telling me about UKPIN.

Sue

When caitlin was little we used to go to Southmead I miss going there.

[gilliem]

Hi Liz. This is an FYI. Immunology clinics at Southmead are on Tuesdays. They're not in the same part of the hospital as the Haematology and Immunology Day Unit where we locals go for our infusions. There isn't an immunologist on duty in the latter, only a consultant oncologist.
Best wishes,
Gillie.

[liz2mac]

Hi Gillie & Sue,
Sorry for the LONG silence. We changed out internet provider to SKY, who failed to get a router to us by the time our old service provider switched us off. I have spent a week on the phone to SKY, begging , threatening, pleading, and finally (and humiliatingly) crying. Today, finally, it arrived so now I have two weeks UKPIPS work to do in three days as I have visits lined up in London next week! GRR.
OK, most of the hospitals don't know about us yet. The reason for this is:
When the PiA was in iminent danger of going down, the Doctors knew before us. They were very concerned that the UK should not be left without a replacement PiA, so went about trying to espablish a replacement. Along came Sam and the rest of us and UKPIPS was born. Since we didn't quite fir into the visoin that the Dr's had first envisioned for us, they stood well back to see what would happen and in the meantime continued to try to foster a "new PiA". Well, UKPIPS is still here and working very hard on behalf of all people living in the UK with a Primary Antibody Deficiency...................................OK, this is getting to complicated for this thread, I'm going to re-post about this.
Suffice it to say, there is a reason they don't know about us, but I'm doing everything I can to change that situation. I will contact Bristol and the children's hospital again (my grandson is actually a patient there, though he is one of the lucky ones that got away so far without developing a full blown PAD) and will try to get an appointment to meet the teams and tell them all about UKPIPS. When I have a date I will contact you both and see if you would like to come with me.
Liz