Time to be a benevolent dictator...

Some people might not like this blog, I'm going to threaten one of the most sacred cows in my community - the primacy of the medical profession.  I'm often considered disrespectful to the doctors and nurses, as according to two people in the last year (neither of them in the medical professions) I owe them my life.

I owe them my respect, and they get that, but its not, not ever unconditional.  Why? I can almost hear some of the gnashing of teeth;-)  Now when I do presentations on communicating with doctors and nurses I use transactional analysis, and other techniques, to try and give people a framework that they can use to get the best out of their appointments. However, this is my blog and I can be slightly freer with my explanations, and indeed colourful language...

Where to start...

I'm constantly told that I'm part of the team of people looking after my health, my medical needs, the management of my various health term conditions...

Some go as far as saying I'm the captain of the team...

A few more suggest the manager...

BOLLOCKS!

At the end of the day, I'm the one who lives with my body 24/7/365. 

A team, has no I in it.  Everyone in the team has, normally, a substantial stake in the outcomes of the "game".  That doesn't seem to apply to my health care.  I'm one of many patients each and everyone of them has, and despite what I might like to think I'm no more important (or indeed less important) than any other patient.

Sorry, that also applies to everyone else...

A classic example comes from the diabetes care and monitoring... I suspect that my blood glucose is going to be over my target level - apart from it's not my target level, its the generic target level for people with type II diabetes.  Yup it works for the majority, and it's a good target to have... But, I'm a mad bastard who so far this year has chalked up c50 miles a week (83km).  That's not an excuse to stuff my face full of chocolate, but it does mean there are times when I need to replenish carbs at a rate that would scare any islets of Langerhans!

So, my diabetic liaison nurse may well huff & puff, but its my body - give me a personalised target, taking into account my active lifestyle, and the fact that I can't always have a balanced meal...  Can you imagine trying to run the second half of an ultra on a Sunday roast?  If you can't, trust me trying to move at any pace above stroll could well result in heaving... and not dry heaving.

My cardiac team, is the same... They provide me with advice.  If they're any good they'll realise that just issuing dictates really isn't going to work, if I need to change something then they'd better be able to convince me of what I need to do...

One cardiologist asked a surprisingly open question when new to me - we'd had a discussion about when my pulmonary valve would need replacing (its a constant for Fallots patients)... He said he'd continue to keep an eye on it, and tell me when it was best to book me in.  At which point, he discovered that was the wrong approach... and a conversation about what assessment and criteria we would use started.  And the open question was "will you be able to handle the data?".   He as surprised by my two part answer - yes, and even if I wasn't it's your job to explain what the numbers mean...

Our relationship improved immeasurably from then on.

There is one area I'm not going to have any control - if and when I decide on the advice of the team that the valve needs doing (no indications yet, trust me... ) when I'm knocked out on the table and a surgeon has his hands on my heart then there won't be a discussion - but before hand I'm going to want the plan explained, the options and bail points. 

To summarise, these are my teams.  They advise me, and I make decisions.  This isn't "patient centric decision making", this is the patient making decisions.  So, I am the benevolent dictator, these highly trained professional experts are the advisors sat around my internal throne.   

I do hope that someone has let my new cardiologist in on my approach, it'll be better for all if he has...

TTFN

Paul