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Discussion Starter #1
Hi there,

I have recently been diagnosed with lupus and I am pleased to say I have a really good consultant.
I have had a couple of appointments now but I find that sometimes I will need to ask a question in between my appointments, especially to do with my new meds as I was having a lot of trouble with the first lot he put me on as thay made me really poorly. I went to see my gp but they were no help and had to look it up in a book which did not fill me with confidence at all! I just had to sit it out until my next apointment with the rheumie which was another 9 weeks away.
I was just wondering what other people do when faced with these kind of sitations? Are we allowed to have an email address as a point of contact for our consultant? It's terribly frustrating when we have questions and concerns that need answering and it can be quite scary when you feel like you don't know what to do.
I am new to all this so I hope some of you will be able to offer some advice.
Thanks xx:)
 

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Hi Lottie -

In that situation, I've emailed my consultant and asked her to ring me. She doesn't mind, she told me that I can always ring if I have any questions or concerns.

HTH -

Nellie
 

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It depends on the doctor. Some allow you to email questions. My rheumy isn't into emails so I call his nurse and she gets back to me latter in the day. You can also check with the pharmacist if it is a question about medications.

When I feel I need to be seen, I phone to see if I can have my appointment moved up. Most specialist are extremely busy but they do the best they can to accommodate you.

Take care,
Lazylegs
 

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I can call my rhumey's nurse and she calls me back.
I also can call my pharmacy to check on medication.

Love,
Lyn
 

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Me too, I call his Secretary and she speaks with him and relays my concern. Most times he will ring me back at the end of his day and we sort it out that way. If it's something pretty straight forward, and he doesn't need to ask me for more info she rings back with the message.

love
Lily
 

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If I run up against a question between visits, I will call and ask him to call me back. If it is an emergency, I make sure I put that in my message. Otherwise, either he or his asst will get back to me when they have a few minutes. An e-mail works too.
Sally
 

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Lottiex,

There is no reason at all that should stop you phoning your specialists secretary today which your concerns. Ask for them to either get the specialist to get back to you or give them a message to relay back. The return call may not happen that day (unless life threatening) depending on clinics etc., but also ask secretary how long before you may hear back.

Whatever you do dont be apologectic with you reasons, be strong and explain well and remember the specialist is there for your patient care. You need to have a clear idea in your mind as to what they want you to help you with, i.e. if its pain then better pain relief, if its a worrying symtom and explantion and solution, so on and so on!
 

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I was wondering about this too, but I wouldn't even know how to contact my specialist. I also don't know how to go about obtaining copies of transcripts/reports etc from hospital.
 

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I call my rheumy secretary who usually gets back to me the same or next day
If Im feeling bad I can usually get emergency appointment and see her with in 2 weeks or less

dixy
 

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Hi there,

My rheumy absolutely hates e-mails but my GP loves them... always worth asking what suits who.

After a couple of rather bad patches I was told in no uncertain terms by my rheumy that I had to contact her if there was the slightest concern. I do that simply by calling up the rheumatology service at the hospital where she works and explaining that I'm a patient of hers and asking her to call back.

Alimonkey, you should be able to find the general number for the rheumatology service via the web. If you can't, ring the hospital appointments number and ask them how you should contact that service when needed. I would then also ask them about obtaining copies of all your reports unless you can maybe do that via your GP (maybe they're not complete though). Personally I just get my reports from my GP as everything has to be sent to him and his secretary regularly makes little bundles up for me.

Katharine
 

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My rhuemy has an email through the hospital that he is with. You can contact anyone of the doctors listed in that hospital. It would not hurt to ask for an email as it will cut down on phone calls to their office and can be answered over lunch lol, which makes everyone happy. The nurse usually calls me anyway with the answer but they can post there answer in your account and you can log in and get it also.

The gp is doing the best that he or she can do as this is not in their area of medicine. The fact that they looked at all impresses me. My gp was up front with me and told me that she knows very little about lupus but in a pinch is willing try and help me if I need it. I was grateful for the person to fall back on if I need to. She also agreed to work hand and hand with my rhuemy so that they are not doubling up on tests or meds. It is nice if you can get them to communicate with each other like I did, to be honest I didn't really give them much choices.

I do hope that this has helped in some small way for you and that you are feeling better.
 

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This issue was on my list of what I need from a doctor when I hired my current rheumy 15+ years back. It may help for you to sit down and do one for yourself.

What I did was:
I made 2 columns on a piece of writing paper. On one side was what I need from a doctor, the other was what I bring to a doctor. In that I put down not skipping appts, not messing with my meds, coming prepared for my appts, that sort of thing. On what I need from a doctor, I put down that I need to have an open dialogue, I need him/her to be a team player and not be an isolationist. It took a while to fine tune the list, but let me tell you when I did do it, it made things really clear.
I then called up the doctor, and over the phone I "interviewed" him, and he interviewed me. He was a bit taken back,surprised, when I went thru the columns, but he appreciated that I made things clear for both of us. It was one of the best things I have done with my doctors. He is a superb team player, gives his input where needed, is there when I have a crisis. Getting his asst trained has taken a bit longer.
I hope this helps you to figure out where you stand and if the doctors are meeting your needs.
Sally
 
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