Be a positive deviant
It gave me the kind of heart ache I’ve felt so often as a nurse. A dull sad feeling that emerges from bearing witness to a person finding themselves worse off from engaging with our health care system.
I work in health and it’s often hard. It can feel so rewarding, so real in the smallest of moments and yet so soul destroying in others.
Sue, your story is sad and honest. It feels angry and sad and raw… it feels like a break up letter.
I hear you. I know you wanted to make a difference to the experience of people receiving care in the system. You volunteered your time and energy to change what causes bad experiences for patients and their families.
Sue, you spent the last dozen years working at the coal face of advocacy. Forging forth to have the consumer voice recognised and respected.
After years of projects and conferences; after hours and hours of capacity building and speaking gigs, I hear in your words your deeply felt commitment has been shattered.
Your message is clear, the years have been thankless and have left you empty. Not only is the patient experience seemingly unchanged … in your own experience of giving you feel used up, fed up.
You don’t see an end to the seemingly never-ending shitty patient experience that just goes on and on and on… regardless of your and other’s efforts to change it.
Sue, your blog is heart breaking in its deepest humanity. Your essay a swan song, your break up with the advocacy movement you have deeply loved.
I get it.
I’ve felt like this so many times. I felt it this afternoon in our team meeting with nurses who are tired and careless in their language; I’ve felt it bearing witness to the tears of a daughter awaiting the coroners decision about her mother’s death in our care; I’ve felt it in the countless people with diabetes feeling they have to apologise to me for their ‘bad’ numbers… I’ve felt it in too many other moments to list.
Sue, as you leave, closing the door on your patient advocacy work, you ask “What’s the point?” And I still hear within me the answer, the quiet certain unwavering voice… “because it matters…because we can do this… because it’s changing…”
Oh Sue, don’t misunderstand me.
I’m not going to list reasons why you should stay, or new strategies that you could use, or even the great things that have gone before us.
However, I will bear witness to the casualty in your resignation.
And let you know I’m really sad this has happened.
I worked the last dozen years in service of others in health care and I want to change the seemingly never-ending shitty patient experience too.
Today (and tomorrow) I will continue because I know we can do better. So much better.
And best of all Sue, I’m pretty sure we already have the solutions waiting within us.
Yeah, the thing is, within every community the solutions to isolation and disenfranchisement dwell just below the surface. Within the heart of human experience.
I’ve stopped trying to find solutions for people and started to recognise that the people using and working within the heath system are the experts who already have the solutions to their own problems. I’ve just got to listen.
Given half a chance they will self-organize, pooling their collective intelligence to effect social change at their local level. I’ve just got to give them the space.
Given the opportunity any community will discover sustainable and meaningful solutions to a given problem. I’ve witnessed successful uncommon behaviours that are already being practiced in the health community. I see it in the Diabetes On-line Community (DOC). I see it in my team and in our service’s Consumer Reference Group.
Watching communities emerge and strengthen within constraints and challenges I see a future brighter than our darkest moments.
I feel its flicker that comes from the solutions we already have within us.
Our willingness to become unstuck despite apparent hopelessness, to mine the deepest parts of our selves and find the solution that lies within; this is our hope and our deviance. What binds us together is the release from paternalistic health discourses, in a remarkable gaggle of solution finders and community change agents. A family of positive deviants.