New Speech Next Week

I am very excited to be speaking next week at Christiana Care in Delaware. They have asked me to speak at their employee awards ceremony, and I am very honored to be able to share my story and ideas with them. Also, it is still very hot in Florida with NO snow, so I am hoping that I will get to see some snow while I am there.

Anyone have any questions for me that I should include in my talk?
Any tips or suggestions from my past talks (many are posted here on my blog)?

Thank you to Christiana Care for inviting me. I really love getting to share my experiences and ideas. I think I become even more passionate about patient experience as time goes on. I would love to hear from you, so please leave me a comment.

Dignity Health Patient Experience Summit

Recently, I was invited to speak on the main stage at the Dignity Health Patient Experience Summit.I met Sandy and Jacob at the Cleveland Clinic in May, and I was excited to get to work with them. I also got to meet Jason from the Beryl Institute after months of twitter conversation. 🙂

It was really great to see how all of their hospitals are embracing the patient experience. I am always inspired to see people trying to make it better for patients, and it makes me hopeful for better healthcare experiences for all patients.

I was so happy that the leaders were willing to take pictures with me and my Cure JM bracelet, and they were nice to learn about Juvenile Myositis and Cure JM.

Here are some of the pictures from the event.IMG_0285

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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.

Crowdfunding a Solution to the Beeping?

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Every since my mom showed me the Intelligent Hospital display at HIMSS, I have been trying to think of how I could get that Vocera thing into my hospital. If you don’t know what Vocera does, it is a device that nurses wear around their neck, and it allows direct communication to the right person. For example, my infusions of IVIG is very thick so the IV beeps a LOT. Instead of it beeping to me in my room, it could beep straight tot he nurse who could either answer it herself or ask another nurse to look into it with a push of a single button. This means that I would get response without the normal way it is today.

In case you haven’t been in the hospital, this is how it works – at least at my hospital.

Beep, Beep. Beep – the IV beeps to say that it has a problem
I push the Nurse call button on the remote.
My mom gets up and pushes the silence button on the IV pump.
The attendant (not really sure who this person is but it isn’t my nurse) says, “Can I help you?”
I say, “my IV is beeping.” Sometimes they can’t hear me and we have to do this part a few times.
My mom keeps pushing silence every 2 minutes – sometimes the nurse comes quickly but other times it can be 10 minutes or more depending on what they are doing.
The nurse comes in and messes with the machine and it is happy.
She turns of the call light.

Sometimes, this can happen 5 or 6 times in an hour, and sometimes it doesn’t happen at all. I would guess that it happens at least 25 times in 24 hours – maybe more. It also happens when each infusion is completed. So, they hang one med and when it is finished, it beeps, They hang another, and when it finishes it beeps.

So, I learned about this Vocera device and it sounds heavenly. I spoke to them,and it is pretty expensive to get for my hospital, but I was thinking about trying to do a crowdfunding campaign to buy it for my hospital. What do you think? Do you think I could raise $25,000? Would you be willing to help find people to donate or donate yourself? Should I make tshirts and sell them or something? What ideas do you have?

Lab Draws at the Hospital

Do lab draws really need to be done so early? My mom was in the hospital last week, and the guy came to draw her blood at 6am each day. The first few days, the guy would knock once and then turn on the full lights in the room. I mean bright lights. One day, my mom was startled when the lights came on and said “turn out the lights.” The guy said something like “I think you want me to be able to see when I stick a needle in your arm.” A new guy came the last few days and he was much nicer about the lights. He turned them on but he tried to give my mom warning first. My mom was talking to him about how early it is, and he said that he starts at 4am waking people up to get labs. He said that it is his least favorite part of his job. He likes the rest but he doesn’t like waking people up.

He said that he has to come so early because some doctors want the results by 7am rounds. But, my mom’s doctor never came in before 3pm each day. He wasn’t reviewing the results until he came in the room either because he looked them up in the room.

So, my question is, could there be a different way? Is it necessary? Could only the critical ones be done so early? Or maybe only the ones who have a doctor who comes early? Any other ideas?

Food at the Hospital

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My mom was in the hospital last week, and I was really surprised by the way that they served food to her. At my hospital, they let me pick what I want to eat and when I want to eat it. I think the hours are 6 in the morning until 11pm. I don’t feel well a lot of the time that I am there, so it is really nice that they let me order what sounds good to me at that moment and to order when I feel like eating. 

My mom had food delivered at 7am, 11:30am, and 5:30pm. Seriously, who eats dinner at 5:30 at night? And I would miss almost every meal if they brought it to me at 7 and lunch at 11:30. When I don’t feel well, i try to sleep as much as possible and don’t want to eat in the morning. 

My mom could ask for things like pudding, jello, and chicken broth from her nurses. She wasn’t really able to eat much when she was there anyway, but I couldn’t help thinking about the people who are hungry and don’t have the choice. Also, when the did ask what she wanted, they asked her the day before. When you are sick, how do you know what you will feel like eating the next day?

As you know, I think sleep is really important to getting well. I also think eating is important to getting well. My mom posted about this on twitter and it seems some other places are like my hospital but that a lot are still like this one.

What are your experiences? Do you think it is important to let the patient say when and what they eat?