Reflections from a Patient – UCSF Peds By the Bay Post

I was honored to be asked by the University of California San Francisco (UCSF) Peds by the Bay team to write a “Reflections from a Patient” post. Not only was I happy to be asked to share my experience and thoughts, but I got to work with a great editorial team. I am also the first one to write a patient reflections piece, and I hope that it starts a trend. Patients really do need a voice.

Here is the link to the post on their site http://pediatrics.ucsf.edu/blog#.VD9DIdTF9Ec.

I am also posting the text here but click on the link to see it on their site for nice formatting and pictures 🙂

The Peds by the Bay Blog is fortunate to welcome our first post on the patient’s perspective, from a well-known blogger, Morgan Gleason. Her perspective below highlights her thoughts on today’s medical care in general and is not directed at any hospital or clinic in particular.

Last fall, I went into the hospital to get my regular Solumedrol and IVIG treatment that I had been getting for about 3 years. After the treatment, I usually get a bad headache that sometimes lasts for a few days, but this time, it was different. I was discharged from the hospital on Friday, and on Saturday my headache was worse than normal, and I had new pain in my knee and back. I went to the Urgent Care because Advil and Tylenol were not working. They prescribed Vicodin, and other than me acting a little crazy and getting some short-term relief, the headache was still very bad.

That Monday, we called my doctor. He said to wait it out and maybe it was a virus. When we called back on Tuesday, he prescribed a higher dosage of steroids to take for a few days to see if that helped. Several times, we discussed going to the ER but I didn’t want to go because I knew it would mean a spinal tap. By Thursday night, I was lying on the bathroom floor crying. My mom said enough was enough and took me to the ER. The spinal tap was done and showed white blood cells in the spinal fluid, which meant I had meningitis, so I was admitted for 8 days. When I was doing better, they send me home. I had a few rough days after I got home, but then I finally felt better. It took me a few months to get my strength back and to be able to really feel better, but I was healed. I was relieved to be back to riding my horse and hanging out with my friends.

However, I also realized, as I looked back on my hospitalization and the weeks afterward, that many times, the things I went through were tougher than necessary for my family and me. I realized that some small changes could really have improved our experience, and I decided to speak up about them. Please be aware that we are very happy with our doctors and hospital. These are common issues that I have experienced with most doctors and hospitals and they are meant as examples to inspire improvement.

When you are very sick and not feeling well, it can be terrifying. When the call is made to the doctor’s office and the patient (or mom) says that they are very worried, it shouldn’t take hours to be able to talk to the doctor. In most cases, we are asked to leave a message for a nurse who will call back when she has time – this could be hours or even the next day. To get a response from a doctor at the time you call, or a few minutes after you call, would be a huge relief to patients and families alike. When you are sick and concerned, minutes are not just minutes, they are each 60 seconds of anxiety and stressing that something could be very wrong.

I know that teaching is very important in healthcare, and I usually try to teach the med students and residents about my rare disease so that maybe they will be more familiar with it than your average doctor. However, it is not comforting to hear things like, “I haven’t ever done a spinal tap before. Can I do this one?” I already get stressed about spinal taps due to a complication I had one time where I had a leak, and I had to stay in the hospital for 12 days. It is better to discuss things like that in the hall and then talk about it with the patient and family.

When I was admitted, we had been in the ER all night and had been suffering through many sleepless nights before we arrived. I had a horrible headache, was exhausted, and all I wanted was to go to sleep. However, I had someone in my room non-stop for hours after being admitted. Finally, a nurse saw I was on edge and put a sign on the door that said, “Do NOT enter unless REQUIRED.” It was an amazingly kind act and let me get several hours of sleep. Sleep is important for the patient and the healing process.

I had three doctors who were treating me at the hospital. Each one had his own ideas about the best treatment. Instead of spending 30 minutes together in a room talking about it, they would each tell their opinions to my mom and then ask what the other doctors said. From my experience, we could solve a lot of problems in the hospital if we just had ALL of the doctors treating the patient come in the room at the same time to discuss what is happening and to determine a plan together. Some hospitals are starting to do “patient-centered rounds”, but I haven’t yet had the experience of all of my doctors coming at one time.

The discharge plan is important and needs to cover what to do in different situations. It shouldn’t just say call the doctor or go to the ER with these symptoms. I got home and had worsening pain and didn’t have any real plan to deal with it if the meds I was given weren’t enough. This made me suffer and worry about having to go back to the hospital.

At our follow up visit to the neurologist, we were greeted with an iPad to fill out information. It asked SO many questions, and it really seemed to be a lot since I was an existing patient. Then, when we got into the room, all of the same questions were asked again. If you are going to ask patients to do work, make it meaningful and use what they give you. If you are going to ask the questions again anyway, skip the iPad or clipboard. I would rather have a conversation with the doctor than fill out the forms.

Both the neurologist and the hospital have a patient portal. We have logged into both, and unfortunately that requires two different logins that have different requirements so we can’t even use the same user name and password. I actually am up to 7 patient portals so far. Then, when I do log in, the information is so very limited that it isn’t helpful. For example, none of the visit notes are there. Each has a medication list that isn’t correct and the hospital has a bunch of lab test results but that is it. It is great to have online access to my information, but this process needs to be easier for the patient.

Unfortunately, I subsequently had a second case of meningitis. However, this time, I was much more prepared. My mom had requested all of the records, so this time she could give specifics to the doctor about what happened last time. We knew to ask for a sign on the door to let us sleep. We knew what meds worked and didn’t, and we made sure to stay at the hospital long enough to try out the home pain meds to be sure they treated my headache adequately. In other words, we did our part to make the experience better, and the doctors and hospital also tried to make it better. It certainly wasn’t perfect, and this experience inspired me to make videos, write blogs, and speak at medical conferences about patient experience. If everyone would work together, I believe can improve the experience for patients, families, and doctors.

About the author: Morgan Gleason, a Florida high school student and patient experience advocate, shares her healthcare experiences to inspire change. Four years ago at the age of 11, Morgan was diagnosed with a rare autoimmune disease called Juvenile Dermatomyositis. After making a video that went viral while in the hospital for aseptic meningitis, she began recording more videos and writing posts for her blog as well as writing articles for journals and other healthcare sites. She enjoys sharing not only her frustrations with the system, but also simple examples of ideas and methods that can make it better. When she isn’t in school or working as a patient advocate, she is riding her favorite horse Riley. See more at http://morgangleason.com and follow her on twitter at @Morgan_Gleason.

Interview at Community Health Network

I was honored to be interviewed at Community Health Network a few weeks ago, and they were kind enough to share with me the video. The video above is a shortened version of the interview. First, they played my original, “I am a patient and I need to be heard” video, and in the middle, they played my “Why does everything beep?” video.

The full length version can be found here if you want to see the entire thing 🙂

Thank you to the Community Health Network for having me at your event. It was a lot of fun to share my story and to get to meet an organization that is working so hard to deliver a great patient experience. I love your Patients First idea.

Stanford MedX Rare Disease Panel

On February 23rd, I was a guest on the Stanford MedX Rare Disease panel. It was my first google hangout, and it was fun. Other than having a technical issue that prevented me from having a cool name listing like the other panelists, I thought it went well. Because i was under 18, they had my mom participate in the background.

We discussed what it is like to have a rare disease and the challenges with explaining it to others. We talked about the importance of research and connecting with other patients online. It was great to hear other share their stories. There were other patients, a caregiver, a doctor, and a journalist on there as well, and it seemed like we had some common stories to share.

There are over 6,000 rare diseases, and together they affect about 30 million people in the US. When you put them all together, they are not that uncommon, but each individual disease has less than 200,000 people with it in the US. That is the definition of a rare disease.

CureJM.org has a lot of information about my rare disease, Juvenile Dermatomyositis. If you are interested, check it out. The more people learn about rare diseases, the more we can have faster diagnoses and better treatments. Cure JM also has a patient community that is great at helping families get information they need.

Another resource we discussed was butyoudontlooksick.com and the Spoon Theory. If you haven’t heard of it, it is a great explanation of what it is like to have a chronic disease that causes fatigue. Many people don’t understand what it is like to look well on the outside but to feel badly and suffer from fatigue.

Check out the video and let me know what you think!