Archive for the ‘Family Advisory Council’ Category

Take it from me; tips to improve your child’s next appointment

Tuesday, August 3rd, 2010

Tips to asking questions and getting answers

The reality of having a child with chronic health care needs is that clinic appointments are a frequent event. One year I counted them all and from January to July we had 60 appointments alone.

I had to figure out how to make the best out of our appointment time.

For example, to get us in the right mindset, my son and I have a fun routine on the way to the clinic of listening to a tune by Elmo that goes “You have to be patient to be a patient.” This helps us both, but there are some other things that we could do as well.

So I’ve compiled a short list of tips that have helped me, and will hopefully help you get the most out of your next clinic visit with your child.

These ideas come from a lot of personal experience doing things the wrong way, leaving me frustrated, wondering what the doctor said, trying to recall when I am suppose to come back for a follow-up, and remembering that good question I wanted to ask heading home well after my visit, etc … you get the idea.

  1. Why are you there? This is important because it may determine how much time you have with the doctor. If it is a physical or well child check up you have about 15 minutes. If a sick child visit probably less time.
  2. How do we use this short amount of time wisely? Bring a list of questions and the first one should be the most pressing issue you have. This I learned after having a terrible time getting out the door, running late stuck in traffic, can’t find parking, or need a quick diaper change in the back seat, and then completely forgetting every question I had when the doctor arrives.
  3. Take notes if possible or ask the doctor to write things down, draw pictures, or what ever you prefer. Same list of troubles as #2 above happen when leaving and inevitably you cannot remember anything you talked about. You can also ask them to mail you a copy of the office visit notes. If you learn better visually tell the clinician that. If you don’t, save them the trouble of having to be a brilliant physician and an artist.
  4. Don’t forget prescriptions. If you need refills this is done more easily in person then tracking them down over the phone.
  5. Bring help. If you are able, have someone with you to care for your child while you are talking with the doctor. This can be very helpful.
  6. Get to know how the clinic operates. Surprises are not fun during after-hour emergencies. Educate yourself on what the after-hours procedures are, and what happens if your child ends up hospitalized or in the emergency department, or if your primary doctor is on vacation? I have learned that “call us if you need anything” is not as easy as it sounds.

As I also have said before, having your own personal health record is a great way to keep everything organized. I prefer an online version with the Children’s Medical Organizer, that I can then print out if needed.

Please add to this list. What tips have you learned coming to clinic appointments?

 
Melissa Winger

Melissa Winger is a Children’s of Minnesota employee and long-time member (and former chair) of Children’s Family Advisory Council. Read more about Melissa in her first post to the Kids’ Health blog.

More than a medical record

Thursday, May 20th, 2010

Melissa Winger There used to be a way to tell how sick a patient was by the size of their paper chart. Now that records are electronic, it is not that obvious, although I’ve been told that accessing my 14-year-old son’s record takes a while to download. That’s understandable since with a rare, complex chromosome disorder and the sheer volume of medical intervention he has needed in his short life.

But in reality, with his electronic records, you can read how all his organs work, his severe level of intellectual disability, and the various medical equipment he needs every day. You can paint a picture of who he is and what his life is like without ever seeing him in person.

I should mention that with 32 medical conditions and being followed by 13 providers who all seem to have their own medical charting systems (which apparently do not talk to other charting systems), I am pretty confident in saying that a complete medical record doesn’t even exist. (My tip to you: also keep and maintain your own record system process.)

This picture that you can envision by reading a record may lead you to think that this is a child living a miserable life. He is suffering or in pain. The thoughts among the majority of nondisabled persons are that physical or intellectual disability equals suffering. I can tell you for sure that upon meeting my son, the term suffering would be at the bottom of any list of words that came to mind.

He is the opposite of suffering. I have personally diagnosed him with profound happiness. Is that a medical term?  He has emotions of sadness and anger like everyone else, but overall he is happy and when he is around you, it is difficult to not smile.

This, unfortunately, is not in the record. Neither is the fact that he is Barney’s No. 1 fan, he does not like stickers, the best place for an IV is his the left hand, he can tolerate almost every medical procedure if you talk him through it, he is most protective of his eyes so any eye exam takes the most patience, he will not put on his orthotics until his socks are completely smooth, and so on.

I could go on and on with things that make him who he is, and we all have unique traits that define who we are. Being put into a grouping of disability or chronic disease categories doesn’t define who you are. The medical record does not tell you everything, nor is that its purpose, I know.

Don’t misunderstand what I am saying. The medical record is of vital importance. It just doesn’t give you the complete picture.

What have you experienced with your own children’s health records?

Melissa Winger is a member of Children’s Family Advisory Council. Read more about Melissa.

Children’s from a parent’s perspective

Thursday, April 29th, 2010

Melissa Winger My name is Melissa Winger, the mother of a wonderful son who has multiple medical and developmental needs resulting from a rare and complex chromosome disorder. I look forward to sharing the lessons I have learned navigating the health care system, from the family perspective, both good and bad.

I also want to hear from you, as families, about your experiences.

At Children’s Hospitals and Clinics of Minnesota, I have been involved as a family adviser for 13 years, most of which has involved serving on the Family Advisory Council (FAC). I served as FAC chairwoman for three of those years.

I remember the first time I applied to be a FAC member and on the application was a question that asked (looking for diversity with a goal of having all families that come to Children’s represented), “What do you feel you could bring to the council?” I answered, “I am 19.” When I mailed it off, I thought there was no way they would offer me a seat on the council. Who wants to hear from a 19-year-old mom?

Well, I was wrong and they offered me a seat on the council. I have never stopped sharing my story and experiences, largely because of the positive changes that resulted.

Being a mom of a child with significant needs, Children’s became our second home — over 30 surgeries and procedures and double that of hospitalizations. I had to learn how to effectively navigate the health care system, and to be honest, I do not have it all figured out yet.

I have been able to give input on the design of the Children’s Medical Organizer, an online organizer that I use to organize my son’s records. Through the years I have been a part of many committees and projects at Children’s as the family representative. Currently I work as a Concierge at the Welcome Center on both the St. Paul and Minneapolis hospital campuses.

I look forward to sharing with you some of the things I’ve learned or wish I had known, and I want to learn from you, too. What questions do you have about Children’s that I could offer my perspective, as a mother who has spent a lot of time there with her son, on?