As a patient, it is often hard to find patience during changes of regulation for a chronic condition. Whether it is changing medicines, doctors, time zones, or even diagnoses, finding trust in the process is inevitably challenging.
But when I met the Patient Safety Commissioner Dr Henrietta Hughes, my perspective shifted. Stepping into Dr Hughes’ office, I first noticed the two post-it notes that sat on her computer reading ‘Positivity’ and ‘Abundance.’ I noted these with a mindful eye, as she led a webinar shepherding conversations from neurologists, pharmacists, and women’s health advocates, aligning the members of the health system with the responsibility of protecting our bodies and minds, to find solution-oriented care for patients coping with the effects of Sodium Valproate, a drug prescribed for epilepsy and bipolar disorder.
Thanks to a wonderful opportunity by the Epilepsy Society, I had the privilege of shadowing Dr Henrietta Hughes for a day. For many of us who struggle to manage our condition through medication, practitioners such as the PSC are the antidote to our anguish.
I was humbled by the patience she evoked in the presence of her colleagues. The connections she makes are genuine as she is generous with her time towards her staff, and even me, a woman who battles with the daily thought of being a burden with my condition. She reminded me that ‘there’s no reason to believe that you’re a burden – by sharing your experience, you’re helping me just as much as I am helping you.’ These are the interactions that change lives. They are genuine connections that force you to believe in a human approach to our work. If we do not trust that there are people who want to support us, even in the depths of our doubt, we lose hope.
My journey as a patient with epilepsy has been full of rocky waters. I have often imagined myself riding alone in a boat with crewmates – doctors, friends, and family – sailing me through the rough waters, through new doctors and new countries all in the hope of finding a safe shore. Trust was lacking along the journey, but Dr Hughes put the wind back in my sails. I am hopeful and trust that her leadership will advance patient advocacy and allow patients to land safely on the shore.
I thank Dr Hughes and the Epilepsy Society for patiently being on this journey with me.