I stand in front of a virtual orchestra. My musicians are
doctors, nurses, occupational therapists, paediatric dentists,
physiotherapists, office assistants, booking clerks, and health technicians. The orchestra has also included Speech and
Language Pathologists, a variety of specialty teachers, classroom teachers,
Infant Development specialists, and researchers. Each section of my orchestra
has had turnover, with new members replacing old, new kinds of specialists
coming in and leaving, but always an echo of their presence remains.
In the meantime, I am meant to conduct these musicians.
Their instruments are their tests, their knowledge, their hands, their work.
The scores they play from are their reports, the test result placed in front of
them. Each of them are sitting there, on their own, quite often sublimely unaware
that they are but a small part of a greater musical endeavour. I try to weave
meaning and music from their parts into the greater whole that is my son’s life
– taking what I can from each appointment, meeting, therapy, and class. I interpret
what I learn in one area and adapt, explain as I move on to the next musician.
Always hoping that I can communicate for them. Always hoping that as a conduit
I’m doing enough.
Wonderfully, amazingly, some try to hear the music coming
from their neighbours to make sense of it together. Others just keep playing as
if they are soloists, a Diva come to the concert to play at centre stage.
And there I am, madly waving my arms, my virtual baton
whirling, whirling, trying to pull the pieces together. Conducting them as if
they are my orchestra, yet their music, the scores from which they read are
often a mystery to me. I ask them to share with me and some do happily,
willingly: Others begrudgingly and some, not at all.
And still my baton twirls, and whirls, because there isn’t
anyone else to try to make this orchestra work. And my son deserves that we
find a way to make some beautiful music out of this cacophony of sound.
Pulling this orchestra together is my job. But it could be
made so much easier if information sharing was facilitated through an
accessible health record. A common musical score, if you will. If there was a
shared recognition that a patient with complex medical needs lives a complicated
life – and scheduling that life requires respect and empathy. For the sake of
argument, the recognition that everyone is a part of a larger team (or
orchestra) that involves those in and out of the health care environment. Finally,
I know that no-one will ever advocate for our son as much as much as my husband
and I do, but the expectation that we are the sole information conduit through
the health care system is ridiculous. This should not be how we optimise health
care for those most vulnerable and compromised.
We can make better music than this.
