I often feel that I don’t get the best out of my (very infrequent) nurse or consultant appointments. I don’t exactly prepare, and sort of expect them to take the lead. When I leave I usually think ‘that went OK’ but then a few hours later I am FURIOUS with myself for not getting the point across about how, despite DMARDS, PsA really affects my life and all is not ‘going OK’. A few days later a letter pops through the door which is from the nurse / consultant to my GP and lists my tender / swollen joint count and I am usually in a state of disbelief. I hurt far more than that…
So, how can I improve this? I was thinking of keeping a diary, or at least writing down all the things I am unable to do or have difficulty doing, but it’s more than that. If I feel that they are not really prodding and poking enough to find those tender joints, should I say so next time?
My next visit will be after trying Leflunomide as my 2nd DMARD for 6 months. If it’s not ‘working’, the theory says I should be at least having a discussion about biologics. I can’t say I am over confident about that outcome as the rheumy is already lining up Sulfasalazine. I need a battle plan…
What do you all do to ensure a good constructive consultation? I know there are good and less good rheumys out there but do feel it takes two and I am letting myself down.
Helen, you are absolutely right: it pays to go in, prepared, and with a battle plan. Here’s an article which has some ideas which you may find useful: http://discussion.livingwithpsoriaticarthritis.org/forum/topics/getting-the-t-shirt
Preparing an agenda, and having two copies of it, is a very powerful tool for taking control of the consult. “I hope you don’t mind, but I don’t want to forget anything, so I have a list to work from. I have a second copy, would you like to have it?” Not every clinician appreciates it, but you can play that by ear. And at the end, you can ask that it be included in your chart.
Of course you “hurt far more than that”! You’ve got ligaments and tendons that are aching as well as joints that are “counted”. And then there are the joints that are too deep in the body to be assessed by touch.
How is your fatigue? Do you bring that up, or do they ask? Do you keep a log of fatigue and pain that you can present or report at your consultation?
There is nothing worse than walking out of a consult and having a forehead-slapping moment about the crucial thing that you forgot to say. And then having to wait six months for your next chance!
In addition to the great advice above, I take pictures of aggressively swollen joints that happen in between appointments. I print them out for my rheumy and take them in when I see him. This helps him to know how things go for me between appointments and I can also keep track of what I was doing/not doing when the swellings happened. It's like when your car makes that weird rattling noise but when you take it to the mechanic it runs like a charm. Your doctor must see what life is like for your on the bad days, as well as the OK ones.
Good luck getting your friends in the NHS to see you more than once every Preston Guild (as my Grandmother used to say).