July's Blog Topic

July's Blog Topic

This month's topic is ‘Getting the most from Doctors appointments’. We want you to share your tips and experiences on your relationships with doctors. Do you make any special preparations before an appointment? Do you take somebody along with you? Perhaps there is a certain way in which you approach a topic with your doctor? We would like as many helpful tips as possible so that we can share them and help others get the most out of their appointments too.

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  • I take a list of things I want to discuss with my Gp, it helps that he trained under my new rheumy and is very understanding of what is wrong with me and is brilliant at making sure that I get listened to and at the moment we are working to try and reduce the amount of pain meds that I am taking.

    My Gp has also been very helpful regarding my next options as to the implications of having a baby as my new partner and me are hoping in the next year to start a family.

  • Taking a friend or relative seems to focus the Doctors mind on being more attentive. Best advocate I had was my 28yr old son who was not a lot younger than the consultant! He injected a little humour whilst reinforcing my symptoms and asking questions I forgot. Wish he could come with me every time.

  • I too also take someone with me, I think like you say, it helps to doctor to be more focused. I also start to make a list a good few weeks before appt, with things I want to bring up because as we all know with the brain fog, it don't stay there long!!!

    I also now have an excellent GP, I changed my GP a few months ago because my old one openly admitted he knew very little about SLE or APS, so I was teaching him. My new GP has an interest in SLE and APS and so is eager to find out all she can.

  • I also always have a list with me, that I've gone through with my husband as well.

  • I also take a list with me as I cannot remember to say everything. I find it is also a good idea to take a photo of any rash you may get along to the appointment. I am on my second GP (due to a move) and neither seem to have had much experience with Lupus. My last GP mentioned he only had two of us. I have also managed to get a new referral to a new consultant as my old one didn't listen. It is important to make sure you are being listened to.

  • I have thought about keeping a diary of symptoms and if there's anything specific that sets them off, such as being out in the sun. I shall take it with me when I next see my consultant as it may be helpful when considering any changes to medication.

  • Hi all... I keep a diary of things, when the pains start where the pains are, how the meds make me feel,as im currently trying a few... I have very bad fatigue and have been signed off work for a few months...I am finally being referred to a rhumy so hopefully i will get some proper answers.

  • Whether i am seeing my Gp,or a consultant i always make a note of what i want to say and have learned to make sure i manage to say it.

    Have learned in the past if you don't they are always to busy and the time you get to see them seems so short so this way at least you feel you have done the best for yourself that you can.

  • I take someone along with me!! She is a great friend and attends with me when I go to the GP.

    and Rhemy. If I forget things to mention then she can prompt me. My New Doctor is also very good and through, unlike some I have had in the past that have not had much knowledge

    of Lupus. Don't be frightened to ask your GP if someone else can 'be therefore you'.

  • I've taken to photographing any swellings/rashes on my phone as sometimes the symptoms can be short lived and might not be there for an appt. My rheumy has found this helpful.

  • For me, preparing for each appt takes up a lot of time: like most of us, i attend around 9 clinics. I guess i'm lucky to have been able to retire early. i keep a box file dedicated to each clinic, with a brief log in each file that lists my treatments etc chronologically. So, I begin appt prep for each clinic by reviewing & updating the right log. My aim is to become so familliar with my pattern of relapsing remitting symptoms relating to each clinic, that I barely need to look at my notes. So, if I'm feeling well enough to ad lib, I can look the dr/consultant in the eye and say hello, how are you today? That usually surprises them: sorta seems to wake them up and make them actually look at me as a person or something instead of a medical problem or whatever: I feel a bit better about appts if I can get the dr to act like a human being instead of just a cold professional....and some drs, especially the less senior ones, seem to have trouble relaxing. Well, they are human too, and up against all sorts of stuff too, i tell myself. Anyway, the prep, including taking photos of my bod etc, I do on my logs also seems to help me feel more confident which means i have more chance of hopefully talking more directly and with more composure of feeling, and even slipping in a few jokes if i'm feeling well enough, so that the dr/consultant can maybe grasp that I see my current symptoms in perspective AND have managed to tough out quite significant flares but hey there are some symptoms I really really need help with: then I list them 1,2,3. The drs seem to have a hard time concentrating on more than 3 things at once, right? And of course EVERY aspect of my lupus is a mixture of issues (eg my feet are bones, soft tissue especially nerves, circulation etc) so it's like Harry Hill: which one is best (or worst): FIGHT!). Clearly I spend a lot of time getting my head around my appts in advance. Emergency appts, of course, are different, but at least I can dive into the relevant box file snd bring a long my updated log. And after each appt, I try ASAP to jot down a few notes so I'll have a better chance of remembering what happened, who said what etc. then, those notes make all the diff when I feel well enough to update the log in my box file. This is all very labour intensive and causes me some stress, strain. So meanwhile I have to be quite careful not to get too OCD about all this note taking....and remind myself not to overdo it...after all, this IS meant to be the drs' job! But how often do they seem totally unprepared.....?!

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