New surgery

[emsy]

Had a new patient medical today as we have finally moved house. Nurse claimed to "know all about immunolgy" yet (unsuprisedly) had never heard of CVID and aked me if my scig was a tablet (classic!). Hope the Drs are better than this but I dont hold much hope as the Dr my diabetic hubby saw last week was totally clueless re Diabetes

[slf]

Hi Emma
Same old story with GPs,but I am shocked by the nurse story,taking ignorance to a new level,usually find nurses take the time to listen and try to learn,while GPs throw their hands up and leave it all to immunology. Did they offer a flu jab by the way?
Good luck there
Steve

[jonmac]

Hi, Emsy

If you want to let us have the 'snail' address details of the surgery, I know we'd be more than happy to send one or two 'enlightening' posters and leaflets

Jonmac

[s162216]

When first met my current GP and told him I had CVID he asked what it was because (perhaps unsurprisingly) he had never heard of it, but he was very helpful and I spent about half an hour explaining it to him so that he had a better idea of what it was. He has read up on it and placed a message that automatically comes up on my notes to give a double course length of antibiotics in case of any infection no matter how minor or considered non-bacterial. Overall I would say that he's been quite good about it compared to some GP's that others have.

That part about the nurse is somewhat disturbing but only basic immunology theory and not clinical immunology is routinely studied as part of core nursing or medical training unless you specialise in immunology, rhumatism or a similar area. Whilst it could be argued that it should be, for the amount of staff that will actually get involved in the area, then its probably not worth it for about 99% of the others and could be time spent on other more immediate areas as obviously doctors/nurses cannot learn about everything in their immediate training.

Sam

[emsy]

Yes Steve, my usual experience of nurses is that they are patient centred, listen, and keen to learn. I speak to them daily in my dayjob as a medical rep. This one was very frosty, didn't seem to want to be there and showed little interest in me or my condition. I guess she was having a bad day! To be fair, i dont think she will be dealing with my CVID very much ( just hoping she is better with the Asthma as she is the Asthma nurse although she thought my Asthma drug might be what I am on for CVID).
Seeing the GP next week so will see what she is like.....

John, good idea about sending info. I might direct the GP I see next week in the direction of UKPIPS and print out a poster of symptoms etc if I can find it. Any chance that Liz can e mail me t if she has it to hand?

Emsy

[jonmac]

Hi, Emsy

Poster and leaflet as .pdf files on their way to you. This thread reminds me of an experience not so long ago in a nameless hospital when a senior Sister fixed me with a glare, hands on hips and sneeringly said, "oh really and what's primary immune deficiency when it's at home?"

John

[liz2mac]

Whoops, seems a little ignorance slipped out from beneath this nurses outer clothing! It's very difficult getting knowledge about PID's in general to the GP/ practice nurse level. Co-incidentally, one of the things I was doing today was talking to the Business Manager at my GP surgery about ways to highlight PIDs to GP's. As a result of this meeting I have am developing a strategy for approaching the new CCG's. However, that will not help any of us in the short term as we continue our attempts to obtain appropriate treatment from GP's who are overworked and disillusioned with the system. Sam's right, many of them respond incredibly positively to any information that we are able to give them, however its not easy to do that when we are feeling unwell and stressed or when it seems to be an uphill struggle which has to be repeated every time we walk through the surgery door. As John has said, we can provide people with posters and basic information about PAD to take totheir GP's and we recognise that we need to develope more material which is designed specifiaclly for this purpose. On the positive side, I'm so glad you have got a new GP Emsy, as this implies that you've finally moved into your new house. Hooray, I do hope that you are all happy and that it is feeling like home now?
Liz

[emsy]

Thanks Liz and John. I received the posters today so I will print out and take to my GP appointment.

New home is definitely feeling like home but still got some boxes that still need a home for the contents! Been here nealy a month now :-). Feeling much happer now

[emsy]

Spoke to the practice manager today...as a rep, but managed to speak to him about CVID at the end. He said that if I e mail him the info he will put it on their electronic newsletter to all the staff including receptionists etc to raise awareness within the pracice. I am really pleased with this (if he actually does it) as at my last surgery getting past the recetionists was the worst part even though my GP was very good there.

Feeling optimistic

[liz2mac]

That's really good progress, well done Emma. I've got a link in to our local CCG, so am hoping that I can get somthing similar done in the CCG. If that works we'll try to roll it out across the country..............
Liz

[emsy]

Well, I saw my new GP today and she was great! She hadn't heard of CVID but was willing to learn more about it. I told her that I had sent some info and links to the practice manager and she said she was keen to research our condition more and it would be good for her PDP. She was a little excited to have a rare patient to see! "a celebrity" apparantly! She stocked me up on sample pots, prescribed me some antibiotics for the chest infection I (still) have and said she will also make sure I have spare ABs.

So after the hiccup with the practice nurse, I think its going to be a good surgery for me after all.....fingers crossed. Just waiting to see if the Diabetes dr in the practice is as helpful to my hubby as my GP was with me today

[slf]

That;s really encouraging,and very good to hear,I am perhaps a little quick to expect the worst of GPs,so I must find an open mind
Thanks Emma
Steve

[liz2mac]

Hi Emsy, Your latest post about your GP sounded really inspiring. How great that she wants to learn about zebras! Hope all is continuing well for you. How's your little boy now after his horrid experience with the burns? I know you were worried about his immunocompetence, how's he doing?
I really want to get up to Hull to meet you and all of your team up there. We've managed to visit about half of the centres in the UK, so we still have a way to go. I'm planning (if possible) to try to have December appointment free, so will start our travels again in the new year.
Liz