Monday 17 June 2013

Treat me right.

I have made a deliberate effort here on the blog and on Facebook to point out the great medical professionals I encounter. Too often our interactions with the medical profession, the system and assorted allied health, are negative. We need to be reminded that there is a lot of good out there, although it may seem hard to find at times. As a long term chronic illness patient I am a frequent medical consumer. And more interaction equals more chances for some truly appalling encounters, but I am also lucky enough to have found some great practitioners to be part of my team. My cardiologist, neurologist, GP, physiotherapist and OT, and even my local phlebotomist, are all practitioners with whom I have formed good relationships. I feel heard and that my voice, and my experience, is valued. That I am both person and patient and not just a body part, disorder, or patient 34 for the day. It is important to recognise these good relationships and encounters, and even more important to talk about them.

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) " 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?
Me: Neuropsychologist.
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 balls up mistake, that the test you were expecting to have today is still not scheduled. That you have to answer the same questions yet again, and wait yet another month, before testing, due to continuing administration mistakes, only adds to the overall stress that already exists. To know that complaint could further impact on your access to that test is both frustrating and wrong. So for now I suck it up, grit my teeth and focus on the goal. After which, letters shall be written.

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.


Dear Doctor

You tell 'em Pat!


  1. Hi Michelle,

    I'm still pretty new to the world of dysautonomia, but like you, I am definitely not new to the world of doctors offices and hospitals. I completely understand where you're coming from, and it's SO hard sometimes to not let bad experiences or ignorant doctors get you down. But don't lose heart (ha, bad pun for us I know) but keep your chin up and remember those on your side which far outnumber the bad!

    1. Thanks J. It is hard at times. I think I am just really frustrated at this point. This clinic has been a shocker and I need the test pre-pacemaker which just adds to the stress. I am thankful that my main doctors are good but it has taken a lot of effort and stress to find them. I hate that it is such a universal issue.

  2. I went on for years love, pain and emotional distraught only to find out that a. I was not "Mental" and b. I was (and had been) slowly in organ failure. Best words ever were spoken by the surgeon who finally did the surgeries that helped me heal and those word were, "Feel free to rewrite your medical history, since it's all wrong now" and yes since when does being homeless and on welfare (as I was at the time) somehow negate the fact that I started University a full 2 1/2 years sooner then my peers? When did I suddenly become an imbecile? But an arse I was when I found out a dear friend's CHILD is going through what you are now love. And it was simply my knee jerking so high up it slammed into my mouth! All I can do is apologize to them (which of course I did, I mean come on who swears at the preacher for goodness sake) and learn more. We all have those things in our life that sets us apart from others, I just hate seeing it happen to a preteen. Well really to anyone..............but sometimes when we run out of things to say our mouth finds things. try, try again, things might be different next time.

    1. I'm so sorry you've been through so much, Anastasiadenton. I knew these things happened back when I was working on the other side of the desk, but now as a long term patient you realise just how prevalent these experiences are. And perhaps more importantly the damage they do to our sense of selves. I can only hope for changes to systems and better outcomes for all of us.

  3. Does this affect the pacemaker op?

    1. Indirectly yes, as it will affect my wound care and infection risk. I really need the testing before I have the surgery so can't afford to rock the boat. It's a sucky position to be in.


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