I am also open about the bad encounters. Be it poor professional knowledge, outright hostility and disdain, or complete lack of bedside manner, I've discussed it. But today I was faced with an instance where I wasn't sure I could post about my experience. I am stuck in a place where the balance of power isn't equal. I don't have a choice of walking away and going elsewhere. I am stuck in a position where I feel like I have to hold my tongue, where I would normally say my piece and move on. I am in a place of vulnerability. A place that many patients find themselves in. And it's making me angry.
I don't name practitioners or clinics. That is a decision I made early on. The reality is that one patient's godsend is another patient's arsehole. I don't want to put another patient off from seeing a specialist who may hold the solution for them, simply because my experience was negative. But the reality is that it doesn't matter the speciality or locality. This same situation is played out in clinics and hospitals across the world.
Patients are forced to stay in situations that are sub-optimal. Situations that don't facilitate their diagnosis, treatment, or care. Whether we are constrained by the obscure nature of our disorder, or our geographical location, we are forced to remain in situations due to a lack of choice. The medical profession are the keeper of the keys, and we must beg for admittance to the knowledge we need, and hope that we will be granted access. We have to put up with rudeness, exorbitant fees, huge waiting lists, poor communication, the list goes on and on. An already difficult situation is made far worse by the forces that surround our disorder and medical needs. Forces over which we have little control. When in truth, the disorder should be our major obstacle.
We are forced to swallow our complaints, and silence our voices, to get the care we desperately need.
Do I complain now and risk being told not to come back?
Do I complain now and wait another year to get into a different clinic for the test that I've already been trying to organise since May 2012?
Do I complain now and be forced from a free, bulk-billed list, to a non-refundable $500 private clinic? To find money I don't have?
These are the questions that I and many other patients are forced to face. I pride myself on being an empowered patient, and yet, today I found myself biting my tongue and putting up with substandard service because I need a test I am unable to access anywhere else. For the first time in a long time I felt powerless. And I hated it.
I left exhausted not just from the physical toll that comes simply from the logistics of attending such appointments, but from the emotional toll of playing the game. From knowing I had to balance my need for care against the need to assert my rights, and in this case my need for care won. It is disheartening to know that in this instance I couldn't be the patient I want to be.
I don't believe that the clinic is run by Dr Evil, intent on deliberately making my experience, and the experience of my obviously unhappy fellow patients in the waiting room, so poor and damaging. But there is a definite disconnect between the clinic and the patients they serve. And that disconnect is apparent in the poor coordination, administration, scheduling, interpersonal skills, and general communication. And that disconnect has left me stressed, frustrated, tired and angry.
It is far too easy to become disillusioned with the system and those who practice within it. To borrow a phrase from Dr Phil (I know, I know. I'm embarrassed for myself) "....it takes 1,000 "Atta boys" to overcome one, "You're worthless and no good...." The same is true for our experiences in the medical system. The negative is like a flashing neon light that colours all our other experiences. With each negative experience taking a large bite out of our belief in the good. Be it the overt experiences such as the doctor who told me "when a woman your age walks in with those symptoms it's always in her head", or the more subtle experiences where doctors don't listen, or act like you are nothing but an annoying interruption to their day. Or others like today's tactless experience:
Dr Blunt: what did you do pre-sick?
Dr Blunt: must suck to really know what's ahead for you?
Each of these experiences make it harder to keep faith in the inherent good that exists within the system.
Power shifts and turns in our ongoing experiences in the medical system. The older position of the doctor being the keeper of knowledge and exclusive director of our care is waning and, thankfully, I have noticed a discernible change over the last 10 years. Patients and doctors benefit when interactions are seen more in a with mind set, rather than the traditional at. Respect is two-way. We the patients have the responsibility to respect a doctor's knowledge and training. But in turn our doctor's need to respect that we as patient's are the expert in our own functioning, and often our own obscure disorder. At our most basic, most patient's just want to know that they have been heard and seen. That in that one consult, they matter.
But it is not just the one-on-one experiences that are important. It is also the associated experiences that surround a medical appointment. Service provision begins when the referral is first sent. It continues with the creation of appointments, the returning of phone calls, the interaction at the clinic desk, all the way to the sending of reports and the reporting of test findings to patients. Hostile or disorganised administration makes the experience so much harder to deal with, especially when your reserves are already stretched. Finding out that after waiting 7 months since the last scheduling
We should have a reasonable expectation that we can respectfully say when we are not happy, without fear of repercussion. And we should not have to put up with substandard service because we are desperate for care.
I am choosing to see today's ongoing issues with this particular clinic as the exception rather than the rule. I am choosing not to let it colour the good that I have encountered.
But it's damn hard some days.
You tell 'em Pat!