Navigating Medical System

I shared information with Janice about how to get people in the medical field to pay attention to you, she asked me to share some strategies.

Keep a medical journal

1) Ask for copies of your medical records at every visit to your RA

2) Download information about any new medication with side effects

3) Make a separate appointment with your GP or RA to review your test results

4) Keep a running list of all your medications, dates prescribed and dosage


1) When speaking with a medical professional on the phone take their name (regardless of their role) and a direct contact number plus the conversation

2) Add phone numbers that are important to your medical journal.

3) Ask questions of the doctors and wait for their responses (don't volunteer a response)

Symptom journal

1) When experiencing a new symptom, write it down with date, frequency/severity

2) Write down any external things that are occurring simultaneously (might be important)

Don't be afraid to ask for a second opinion..

This is all I have so far... Please add more tips on how to advocate for yourself

This is great advice, through trial and error I do the following when going to see the consultant (normally every three or six months)

1. I hand him/her a A4 one sided summary of my last 3/6 months- it is split into sections

a. medication I am currently on.

b. Summary of any lupus symptoms or flares, vision distrubance, aches and pains during the period.

c. Summary of general health, trips to doctors and any other health professional- colds, coughs, wheezes, during the period.

d. Summary of private life, i.e. stressful times work, family, friends during the period

e. any on-going concerns I have which I want addressed

s/he has a copy I have a copy and I go through it- on my copy I have written any issues I wish to pursue further. In the UK the consultants appear not to have read your notes from one visit to the next so I find listing the medication saves time, otherwise you spend 10 minutes trying to remember what your taking and how much (mine is a pretty long list). I also find it useful to divide the facts and the feelings into two seperate issues- sometimes one effects the other, but not all the time. I also ask if they have checked my blood tests- I get regular monthly tests as I am on azothrophine, but do not get feedback if these are normal or not- I have been assured that the results do get checked an if there was any problems they would ring- however I always ask the question in clinic.

In the UK the consultant writes to your GP after every visit- I ask for a copy of this letter-occasionsly the consultant looks a bit put out- but then I point out that I will probably be under the care of numerous consultants for the rest of my life and in 10 years time when my 20th consultant asks why my 3rd consultant changed my medication 10 years ago- I will be able to produce the letter explaining why- long after the scanned copy of the letter has been archived and probably deleted.

Hope this helps!


Yes! I couldn’t remembered where I’d heard that! lol. Thank you for this list. it really is a great one. Is is highlighted somewhere—like on the front page? we need to find a way to make it front and center. Thanks Davina

Hi UNSHOREANDSCARED I agree but i do ask but they ask me why do i wan"t it then sometimes they don"t want to give me my informastion .I have had a lot of things said to me and then the doctors say they never said i know were your coming from .take care dee