There is no shortage of coverage in the news around the corona virus. The dance between the mortality rate and the spreading power of the disease has everyone acting. It is urgent times. The organization of our healthcare is already stressed under normal circumstances. Patients that are on or over the edge of the standard protocols and capabilities, receive less and less adequate care, and have to rely more and more on family and humane support.

Due to COVID-19, our healthcare professionals are, even in this early stage of the pandemic, required to carry loads of responsibility, workload and work circumstances, and personal risk that are comparable to the military during battle. But without having the support organization and resources that the situation requires. This situation exposes how much we lean on the good aspect of humans, who provide us with medical attention and how desperately we need to rethink our priorities in how we organize healthcare.

The cracks in how we organize healthcare, even in the case of “going concern, business as usual” were exposed by Peter Kapitein in his second book, ‘How has it ever come to this?’ if you haven’t read it and you are in healthcare, you really must! But for the sake of this blog a spoiler alert, the way the incentives are set up has nothing to do with patients nor their urgency. Instead it is a setup to keep all the existing business cycles running.

So, we need to change the way we work.

I became a patient advocate at Inspire2live in 2014 after of some years volunteering in fundraising, but to be honest, I never really felt like I could really be a patient advocate, after all, I was not a patient myself, so for a long time a felt ‘out of place’ like I really didn’t deserve to be a patient advocate, until… Many of my fellow patient advocates, whom I’ve come to love dearly, died from their disease and yes, it was like I was witnessing what most people now must feel when they see the corona statistics, I felt desperate. We cannot possible lose this many beautiful people every year, as our wall of remembrance shows, when we could do better by them than just sit and watch!!!

The desperate need of action led me to become more overt to name the problems in healthcare and slowly feel like a patient advocate and in a modest way try to make a difference.

We have to address this COVID-19 pandemic in solidarity and all hands-on deck as we are doing, but we also need to act for all those other patients whose options are running out. It is urgent days for them as well. They need the best care possible.

We need to act, we need to rely more on the collaboration of researchers, clinicians and patients with their guiding self-determination to push the boundaries to improve how we provide care in the uncharted territory, where research is intertwined with the care, because for that patient there is nothing else. For those patients there is urgency, and not just any kind of urgency, there is corona urgency where there is desperate need of solidarity, all hands-on deck and Action.

#PatientsFirst #PatientAdvocacy #Early&AccurateDiagnosis #SequenceMe #ConcentrateHighComplexCare

Piarella Peralta
Patient Advocate Inspire2Live