Anyone on here infuse at Addenbrookes?

[s162216]

Hi,

I know that a couple of people on here infuse at Addenbrookes for definite, but is there anyone else on here?

I'll admit that since I started infusing there full time (as I used to only occasionally infuse there during the University holidays) about 2 years ago I've not really got to know any of other PID patients at all, although it is fairly easy to guess as to who is (glass bottles give it away!). It would be nice to get to know a few 'in the flesh' so to speak.

I usually have it at 1500 on a Thursday, although I am having today (Friday) this time as there were no spaces yesterday. I know that it's quite 'individual' on the PSSU and doesn't really lend itself to easy conversation between chaies, but why not try to get talking with other patients etc? It would certainly make it a lot more interesting and less dull!

Sam.

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[sara74]

i infuse at home but am a patient at addenbrookes, how do you find them? i have terrible problems contacting them

[s162216]

May 17, 2015 14:49:00 GMT sara74 said:

i infuse at home but am a patient at addenbrookes, how do you find them? i have terrible problems contacting them

In the past I've found it very difficult to get through to them, I do know the number for the specialist nurse (who in 2 years I've only actually seen once in a clinical capacity because she's usually gone by the time I have my appointment with the consultant or registrar, but oddly I go past her quite frequently as I actually work at Addenbrookes and she's not recognised me yet!) who I've never had to call about anything really.

Just changing a consultant appointment could be an absolute nightmare until recently as naturally I could never find the appointment letter with the number for clinic 33, and if you look on Addenbrookes website it doesn't mention Clinic 33 at all. Trying the switchboard to get me through to clinical immunology usually resulted in me being bounced between clinical genetics, the immunology lab and various other places; the appointments line also would take ages as they were always funny about whether they could change appointments in Clinic 33.

Well now I know how to solve this problem, contact the clinical immunology co-ordinator Amy Hopper. If you want to change/make an appointment or get through to one of the doctors about near anything then if you email or call her then it'll get done, just ask the switchboard for her (the voice recognition will even work!).

I find Addenbrookes alright as a clinical immunology service, but I just really wish that they would do a dedicated infusion clinic. It's very difficult to talk with people on the D5 PSSU, and as they do anything and everything essentially, its even more difficult to get to talk with others who have PID unless you happen to be next to one; it's also difficult to establish a rapport with the staff as they change so often. I much preferred the system at the QMC in Nottingham, which did a weekly dedicated clinic and was essentially like an exclusive social club, with everyone (staff and patients) knowing each other, talking and laughing, sharing cake etc.

What do you think of it?

Sam.