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.