The term 'Expert Patient' has been coined to refer to people who have a long term health condition and have become experts in their condition. I think I would fall into this category, so I thought I would write about what I like and what I don't like when I talk to health professionals.
Things I don’t like:
“Oh yes, I know what I’m doing…”
I don't know about other health conditions, but with DDH one of the first things you learn is that there are very few people who have an awareness of the condition, let alone an understanding of the long term consequences of misdiagnosis or the incorrect treatment. Unfortunately, I have all too many times now heard the line "Oh, yes I've treated Hip Dysplasia before," or "oh, it's okay, we can deal with complex things," only to find that said health professional is surprised about the things I tell them, or five appointments down the line they are "stumped." This has even at times led to very distressing events during hospital stays (which is a story for another day). I have had some very convoluted conversations sometimes where HCPs have been franticly trying to stay on top of the conversation, when they clearly don't know what they are talking about. Guys, let's cut it out shall we? If you don't know, then say, in an appropriate way, that you don't, or maybe word things in such a way that we can figure it out together. Otherwise you are causing more wasted time.
Being perceived as negative
This has been (and is!) a difficult journey to go through. Even without the run-around I seem to have been given, the long term pain, major surgeries and long rehab afterwards is enough to send even the most sane person crazy in the head. I do believe I try to be as positive as I can be, but sometimes I might not come across like that - please be patient with me!
Impatience when I ask questions
This is a big No, No. If I come to an appointment asking questions it is your responsibility as a health professional to do your best to answer them or discuss them with me. I may ask many questions, or I may ask a few, but at the end of the day, it is my body and I have a right to understand my condition. That is all.
What is helpful:
Being on the same page
I was once doing some physio-led pilates. I had been attending the class for quite a while and had been struggling with some symptoms in my hip again. When I asked the instructor for some advice on one of the exercises, I said, "This is really frustrating!"
"Yea," she replied, "it's frustrating," and then carried on explaining something. We didn't have a counselling session. She didn't start saying, "Now, come on, just try and be positive!" She just got it and we carried on. It felt like somebody was on my side.
A partnership
I really like being spoken to like an equal, after all we are equals really. I like to see it as a partnership between myself and the nurse/physio/doctor. "Let's work it out together," is more constructive than "I know best and you don't."
Asking those who DO know
When a health professional has been unsure how to tackle a particular aspect of what's going on with me and these darned hips, I have really appreciated it when they have said, "hmm, I'm going to speak to somebody I know who has experience of this and see what they say." You are admitting that you don't know, but in an appropriate way, and doing something constructive about it - this feels like partnership :-)
When you do know how to treat someone with DDH!
This should be celebrated with champagne and hugs all round.
So, there you have it, my expert patient 101. I look forward to you incorporating these tips into your professional practice!
