Quality & Patient Safety

 

Natalie Pece

Excerpts from a speech during Quality and Patient Safety Knowledge Exchange
October 2012

Cystic Fibrosis hurts.
It hurts me physically, mentally, emotionally.
Some days are a struggle.
Each day is a new surprise.
Constant developing health issues, doctor appointments, hospital admissions,
pills and treatments.
Sometimes it hurts just to breathe, to cough, to move.
Some days I have no energy to do anything at all.

I think knowing the experience of kids/adults with chronic illness, with illness generally,
is a necessary part of the care you provide.
So when you care for me, I need you to know that this is the experience,
the worry and the reality that I bring with me.

When I was in elementary school I was also diagnosed with asthma.

When I was 27 I was diagnosed with diabetes.
I remember lying in my bed … and in walks a doctor I had never met before and
he had some students with him…he flips some papers and says,
“So you have diabetes.”
I had no idea what to do, or say, or that that was even being looked at.
I remember holding back tears just wanting them to leave.
Don’t I have enough?
What did quality mean to me then?
I would have wanted someone to think, “What is the best way to break this devastating news to this person who already has CF and asthma?”
When you care for me, I need you to know that if it is possible,
it’s important for me hear this kind of news from someone I know.

When you care for me, I need you to know that being there and somehow knowing when patients/families need you, when they need something a little extra is quality to me….
I need you to know I HATE NEEDLES.
I need you to know that for me it’s all about feeling better and anything you do to make that happen is valued by me.
When you care for me, I would love you to think
that I know my body better than anyone else.
When you care for me, I need you to know that it’s hard for me,
that I rely on you a lot and that I have a lot to live for and to be happy for.