01 July 2015

I got kicked off my hospitals Patient Advisory Council... for being a patient advocate

Picture taken from Twitter at @FlipTheClinic.

Almost as quickly as I answered the phone, I heard the words:

"We are going to have to remove you as Co-Chair of the Patient Advisory Council."

I had a feeling those words were coming.  Several days before I had been contacted by my CF Clinic's Hospital Administrator requesting a conference call regarding my recent blog post:, a blog post I had written to remind myself I am not powerless, even if sometimes I feel that way.

I wasn't surprised to hear her words.  But I was disappointed...because it was confirmation of what I had come to learn: my hospital does not yet seem ready to really listen to its patients.

This was the first time ever that my hospital administrator and CF clinicians had initiated a phone call to me to talk about my personal feelings regarding improving our CF Clinic/Hospital.  I had many times solicited their thoughts.  But never had they solicited mine.  Until now.  Until the decision was made to ask me to leave.

I accepted the words, knowing I had no recourse.  So, I asked questions to better understand. 

"Can you tell me what exactly I did wrong?"

The hospital administrator reassured me that nothing I had written was an issue.  Neither had I violated any rules.  I wasn't removed from the Patient Advisory Council (PAC) because I wasn't committed.  Quite the opposite is true.

It was explained to me: I was removed because the legal team and hospital administrative team at my hospital had decided I was "not accepting of the PAC process."

The hospital administrator read back to me the words in my blog post I had written to describe my feelings, words such as "frustrated", "disappointed", "blamed", "neglected", "powerless", "barrier after barrier."  

I heard her tick each word off as though they were a list of transgressions, something I had done wrong.  What I wanted more than anything in that moment was for her to see behind each of those words my transparency and vulnerability.  What I wanted was for her to reflect on them, recognizing that how many other of our patients might be feeling similarly.  Instead of using those words as reasons to remove me, I wanted her to ask, "how can we work together to address these feelings?"

Instead, she went on to explain
 that the reason I was being removed was because work with the Patient Advisory Council "needs to be on a constructive level, not a frustrated/negative level."  

I listened intently to her words.  Where exactly were we missing each other?  Everything I shared publicly, I had shared privately.  My words should have come as no surprise to anyone involved.  

I began to wonder...

Who exactly determines what is "constructive" work?  The patients or the clinicians?  What if one party disagrees?  Is it, for example, considered working on a "frustrated/negative level" if the patient is the one who feels the work is not "constructive"?  Certainly seems like it in this case.  

In regards to the exact "PAC process" that I was not following, I still don't know.  But I'm left to believe that I basically wouldn't rubber stamp what the hospital wanted to do.  

I am of the opinion that the patient voice and patient experience is much more valuable than to just nod and smile.  Patients want to do more than approve work that has already been done.  We want to partner together to change and improve care.

And, can I just stop for a second and reflect on the hospital administrator's comment that a patient's work cannot be at a "frustrated level"?  How in the world can one ask a caregiver of child with a life-threatening progressive disease chained to a broken health care system to not be frustrated?  It's intensely frustrating.  This disease is frustrating.  What feels negative to me is that my son's health is slowly deteriorating and I am desperate to save him.  I don't have time to wait.  I don't get to quit.  I can't go home at the end of the day and put this all away.  This is our life.

My blog began the moment Bennett was born.  It was supposed to be just a vanilla blog for the grandparents and a few friends to watch our second-born son growing up.  But when Bennett was diagnosed with Cystic Fibrosis, it became a place to share about his condition and our efforts to find a cure for his disease.  As I began to learn things along the way, I began using the blog to share ideas and insights for other CF families.  If I'd found a way to hack the system, I wanted to share it with others, just as I want to learn from others. 

It's interesting that such an innocent blog for such an awful condition would upset a hospital legal team and the hospital administrators prompting them to remove one of their most engaged patients from a committee created to listen to the patient voice.

But what this situation has done only better illustrates my original point: patients must be their own advocates.

The internet has changed everything for patients.  Patients talk to each other - in real life and through social media.  CF patients, more than anyone, depend on the internet.  CF patients cannot be together in the same room so we rely on communication via Facebook.  CF patients are often given tests and must wait for days for results so we rely on Google searches to explain the unknown.  CF patients have a tremendous amount of care they must manage, the internet helps inform decisions and understand diagnoses.

(Listen to Suzannah Fox describe how the internet has changed the world for all patients - my very favorite story begins at 6:30 minutes in:)

I had one goal in mind with regard to our CF Clinic Patient Advisory Council: to help set the stage of clinicians and patients to work in genuine collaboration.  

I want my hospital to be one that doesn't remove a patient when they ask for more but who values their experience and insight.   

Isn't it interesting that I felt so unheard on my Patient Advisory Council until my hospital/clinicians got wind of my blog?  It's ironic that my hospital finds patients where they are but cannot work with them to to be there too.

I'm disappointed not to be able to be a part of the PAC anymore.  But I'm not surprised.  Change is scary - and so are patients empowered so that they don't need permission.  

I don't take my removal from the PAC personally.  I still really like my CF Care team and the hospital administrator who informed me of my removal.  The people in these big systems are individuals just like the patients they care for.  Patients are more than their diagnoses and clinicians/administrators are more than their jobs.

My removal isn't personal and neither are these barriers put before us patients.  But it's sad for patients... because patients/families need better.

These words are how I ended the blog post that originally got me kicked off the PAC in the first place.  But they seem even more relevant now:

"What I've realized is the limitations I put on myself are imaginary.  When I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.  And that is absolutely not true.  The truth is: the power is at the bottom. 

I must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.  We want them to be a part of what we are doing.  And I believe they will be.  But those who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.

We are the experts in our own care.  We just need to recognize the resources we have at our fingertips and put them to use.  We need to wholeheartedly embrace the idea that we, as patients, don't need permission to make our lives better.   The permission is already there."

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