Oct 9, 2014

Thoughts from a Patient Advocate

This Tuesday was a tough day for me.  Not because something was wrong with Dylan but because I had to have a tough conversation with staff at the hospital, Elizabeth Seton Pediatric Center.  The call was regarding her surgery that will take place on Wed, Oct 22nd.  I’ll get into the specifics of the surgery in another post but for this one, I’d like to focus on the emotional energy that caregivers and patient advocates use to ensure that their loved one is receiving the best care possible.

Let me start by saying that Elizabeth Seton (ESPC) is a wonderful hospital.  It’s a two year old building so everything is bright, shiny and new and the patients’ rooms are a decent size.  All the staff are friendly, for the most part, and although it took some time, I do feel comfortable with Dylan being there.  The one issue that I have with ESPC are a few of the inefficiencies they have set up with regard to getting PT and OT schedules in place for their patients.  As an example, for a patient like Dylan that wears splints and/or braces on her limbs and who also goes to the school located in the hospital, there is a separate PT and OT therapist assigned to her in school and in her neighborhood (which is what they call where every patient’s room is located).  Sometimes the PT and OT therapist can be the same, but not always.  What this means is that each therapist must make a separate assessment on how long and when Dylan can use her splints/braces which means that she can be wearing them in her neighborhood, but not in school because the PT/OT therapists haven’t completed their assessment.  Very inefficient, time consuming and of no benefit to the patient.  I’m not sure why a patient’s tolerance to wear a splint or brace would change based on whether they are in their neighborhood or in school and when I found out about the process and questioned why it was done that way, no one could explain it to me.

These types of inefficiencies with regard to a PT/OT therapy schedule being set up for a patient had Dylan without braces or splints for several months after arriving at ESPC in March 2013.  I didn’t have the mental fortitude to fight the process and, quite frankly, felt that I had no choice since to ask to have her removed from ESPC – which had seemed like the only option many times – meant that she may be sent to a new facility that was even farther north than Yonkers, NY.  So I dealt with it then.

After making the decision for Dylan to have surgery, however, I HAD to be sure that ESPC would understand what my expectations were for the PT and OT teams should Dylan need her splints or braces adjusted.  The conversation was tense, a bit heated and lasted for about 15-20 minutes.  I asked for a concrete timetable and would not settle for vague non-answers or non-committal.  The team gave reasons for the delay when Dylan first arrived but I dismissed it as water under the bridge and kept the focus on what would happen after October 22nd.  Finally, the physiatrist spoke up and assured me that should any adjustments need to be made they would be done “as soon as possible” after Dylan came back to ESPC.  Not a true timeline, but also a huge step given my first interaction with the physiatrist in June 2013.  The team then decided to provide all of Dylan’s splints and braces when she was going in for surgery so that she had them for rehab and went on to ask that I provide the names of the PT and OT therapists that would be in charge of Dylan’s rehab at Blythedale (the rehab hospital).  Finally, they also committed to having either a phone or in person meeting with Blythedale’s PT/OT team prior to Dylan being transferred back to ESPC.  It was a good conversation where I was able to express my deep concerns and come away with deliverables from ESPC that would address Dylan’s needs.  The additional 20 minutes on the phone was used for the Plan of Care update that I received from all of the staff that interact with Dylan.  These updates take place once a quarter.

After about 30 minutes of downtime where I literally had to shake off the tightness and intensity, I was ready to get back to my day job.  But I was left with a question: why was that so hard?  Why didn’t ESPC expect to work with the rehab hospital? Why did I feel like I was the first and only parent to ask for this?  And if that was truly the case, what could I do to assist other parents in my position??

When Dylan suffered her asthma attack and subsequent brain injury in May 2012, I posted a lot of my frustrations, thoughts and feelings on Facebook.  I also shared some of them with the many friends and family that came to visit Dylan.  And they all said the same thing to me: “Dyan, you should be a patient advocate”.  Now I know how to be that for my child and I know that I could even advise another parent/caregiver in a similar situation as mine.  But how do I do that??  How do I offer that kind of service to parents/caregivers in need?  It’s left me something to ponder and something new to work on!

At the end of the day, I’m still Dylan’s mom and I’m still me.  I’m still the kind of person that wants things done right but not only for me – for the masses.  So, I think I have an obligation to make things better for all the parents/caregivers of patients at ESPC.  Don’t I??

Please feel free to share your thoughts and feedback below.

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