<p>[Music] hello everyone this is Cole from the American Journal of healthc care strategy and here with me is Andressa a patient advocacy expert Andressa why don't you tell us about yourself and what you do yes of course thank you so much for having me uh my name is Andrea huno and I am indeed the patient leader with when it comes to um Clea advocacy but also for granic he and on top of that I'm also in children's book author um about CLE cell deceits it's kimay and the beach my journey living with CLE cell and I also produced two to the animation movies in Dutch and English about my published book so that is a little bit about me I write different articles for WebMD and also for health union when it comes to sickle cell and gronic hies so that's a little bit so I want to ask how many years have you been kind of working as a patient advocate and in performing this advocacy um it's a couple of years now I think my daughter was around five when I really started so that is now seven plus years yeah W that's incredible why did you decide that this was kind of a need that you wanted to fill with this patient advocacy so a couple of reasons why because first thing is that when you're in the middle of figure everything out as a caregiver you literally see where there are hiccups and that there are things that need to be better things like communication with the doctors um medication provid Ms stuff like that and at a certain point also of course when you see that people are not aware of what CLE cell is and that can make it very challenging when you need for example support from work right or friends um so for me that's very important that knowing the fact that I am able to make these changes due to the fact that I'm really advocating for her but also for myself as an a caregiver it really triggered something in me to make sure that I'm able to help others as well so that I can you know increase quality of life for more families that's incredible yeah EXC what an excellent kind of motivation that you have that's really really beautiful thank you I really want to encourage the hospital but also you know with including the medical team when a sickle C patient knock on the door believe them nobody gets out of their house to chill at a hospital they there because they need help and they can't deal with it most of the time time the pain pain is one of the most common side effects of CLE cell right and there are many more other awful experiences or Warriors we call the Clea patients Warriors that they experience but we always try to manage whatever it is we need to deal with at home when we see that we can't make it better at home that's when we try to seek help at a hospital right so the moment that we are at the hospital it's really because we need help and we're desperate to get the best of the best help and support from the medical team so instead of saying what a hospital don't you know don't do this as a hospital I want to do basically switch it and say do this right so that is the first thing the second thing is make your Pati feel H and understood and that means that the first people we are in contact with when we're um entering the hospital is basically the customer service department right because there is where they're asking all the all these questions so it's also important that they are aware of all the different codes and the waiting times for our Warriors right so we need to educate them as well the NH they have like these guidelines right where they guide you like okay a CA patient they need to get treated by code 2 not longer than 30 to 40 minutes Etc and if they are aware of that that's make them whole process much smoother the second touch point that we have are the nurses right the nurse is basically the per the person that comes in the room first right so they need to be aware of what's going on as well so we need to be quick quick there is no time to lose because the longer your body is in stress the worse it can get when you have a crisis at that point so these are basically education is very important making uh the patient feel hurt respect you know another thing as well is that when a patient is in so much pain so much pain that they can't you know communicate in a way that they would not do don't feel that a patient is attacking you with words right it's just based on frustration based on the fact that they don't know how to deal with the pain anymore they want help help help right so to be able to put yourself like empathy is basically the right word right to show empathy so that they know okay I'm in safe hands and then at a certain point you will see the switch as well when it comes to the patient that instead of being frustrated the moment that a patient see that oh okay he or she is trying to do his ultimate best to make me feel better and they're listening to me they're respecting me then you will also see that a patient will you know slow down and be like okay I need to work with them because it's teamwork at the end of the day I always say this to my medical team the medical team needs to understand that for example I as a mom and a caregiver when I move to another house or city the first thing I look up is what is the best hospital in this case the best peditrician hospital right at a certain point my daughter is going to be an adult so when I'm going to move around I'm looking at the safest place for my daughter because in case we need help I need to make sure that I'm close to a certain area because of the fact that the hospital is there so I hope that answered the question yeah definitely how do you teach clinical staff to communicate in a way that makes patients feel hurt what are some strategies that you've done that you know help with that that's a very good question and I've done it in a couple of ways right I've had situations where I saw based on the respon that I got from you know the medical staff that they had no idea what was going on and for me it was also you learn via failure right when when you make mistakes Etc so what I did at a certain point there is this book and I'm going to grab it there is this book that I started to carry with me all the time because I was like it's very important for the medical staff to see what it is and if they are not aware of what's going on right CDC guidelines CD is online right CDC has an amazing guideline when it comes to Cle cell anemia so that is one another one and this is really my Bible this is what I really used when I was figuring it out myself and when I saw that things are not going as it's supposed to go especially at a ER right that is where people because when you go to the hematology department for regular stuff the hematologist staff they are educated on all the different blood disorders right right but people in the ER they're not Specialists they need to connect with the hematology team so hope and Destiny was really my go-to book at a certain point where I was like okay guys listen it's my role as a mom to make sure that they are aware of whatever is going on right at a certain point when my children's book was published I made sure I had copies when I go to new areas Etc so that I can give them a book because you you know when when someone get a gift they're excited so they got to read it for sure because oh my God this is so cute thank you next time when another patient go there another Warrior they know already what it is and they got to be eager to know more so these are different things another thing that I also do to try to educate our um staff hospitals after at a certain point I felt a little bit how do you say that helpless because I saw that it was so messy I had a very messy experience um at a ER with a nurse and I was able to fill out a survey right I never thought that someone was going to read my answers but as a mom I felt so helpless and frustrated and I was like I'm just going to put everything there share my story and if someone listens or read it it's all good and for me that opened a very big door so that I was able to join the um patient and um Family Advisory Group they recruited you from that survey to join the that's incredible so that was amazing that was really amazing so so you were able to provide them with with good feedback then yes I am able and the Beautiful Thing of being part of the pook is that it's really sharing the real life stories and experiences with the right team because for example we have presentations from the president of the hospital group we have presentations from uh the HR manager from the nurse director so all these people that are you know setting all the strategies and you know deciding the leadership team basically deciding which way to go with the hospital these are the people you want to be in front of to be able to share your knowledge and to share your experience right and I always say knowledge is power right and when I share my experience it doesn't matter if it's good or bad I share everything but I share it in a respectful way because I need to be smart too the way I present myself that is also um that's going to decide what people are going to do with it if I'm going to be there screaming and yelling and no no no no no people are not going to take me serious and they're going to think oh my God that that woman is crazy right but I need to use my strategy in a respectful way communicating because we're looking for a sustainable solution and a sustainable way because tomorrow my daughter is an adult but I made sure that not only for my daughter right all the patricians that are coming after her people will know what CLE cell is they will know how to treat them and what's okay and what's not okay right and when she is an adult I'm now preparing myself and my princess for the fact that she's going to be a grownup at a certain point and that she I lead by example right she is watching me talking to all these people when something is good what do I say right when something is wrong how do I react you know and that is very important yeah such that is a wonderful wonderful example that you're setting and the work I think it's it's a very selfless work I mean even though it's your for your daughter it's also like you're saying for all of these other daughters out there or these you Sons out there that are facing this what are some successes that you can share maybe just one or two that you can think of where it was not a good situation at first but we turned it into something positive so one of the most beautiful things I had was this and one was this week actually but I'm going to start with the older one yeah so when you go to the hospital and this was a very specific case in the ER um the nurse was not able to find a good vein for my daughter to be able to do her lap work okay you know when you pull a needle needle in and out of your vein it's hurt like crazy right okay so at a certain point I told the nurse can you please pull it out because this is not going to work right and um she and I we were I was very irritated and it was very difficult to stay calm as a mom because I see my daughter looking at me Mom I can't take it help me right okay so I told the nurse this is not going to work okay we need someone else to help me okay well she didn't listen to me though so I also felt that I failed towards my daughter because basically I let her suffer and I wasn't able to do anything so the next time when I needed to go to the hematology team is the first thing I brought up this happened I don't know how to deal with this it was so frustrating ET because that was my safe space because I know the team and then the hematologist told me Andrea but are you aware of the fact that when you see this happens that you can ask to a specialty team because in the ER for example there are specialty teams that are able to use you know strategies when you have difficulties with your veins that they can pull the blood in a very easy way yep and I was like I had no clue right so that was a great way so moving forward now I had another experience then where I was like can you please ask the you know specialty team to come and help they were there in a couple of minutes that's awesome so that was great so discussing in a respectful way right with the right people I got my tools and then moving way and I'm so grateful for the fact that the team that works with us they are aware of the fact that sometimes I'm just the mom right I might look strong I might look at okay yeah I'm advocating patient theater whatever but man when it comes to my daughter my heart sometimes it skips be because I'm so scared so yeah and that and then they were able to retain you and your daughter as a patient you were able to get you know the care that you needed so that's a beautiful story yeah and I appreciate you sharing you know your personal kind of life and and what's going on with that as well I know it's personal but it really helps motivate us to know that the work we do is going to make a difference on our patients even if it's a small thing like the manager giving you a call to ask what it happened that's really important so that's yeah it is it's very important and you know I must also say that before she called me I was literally writing an email to the PAC manager because I was like being part of the team gives me also a feeling of being confident that I know I'm going to be able to you know get my answers and another thing that I also want to share with people is this when I call my insurance company and they share a list with me of providers I can choose from that alone makes me feel confident because if Dr a is not treating me well I know I can go to Dr B so we have a choice right and that is important to know as well as a patient that we don't have to stick around in an environment that is not working with us it's like a relationship if it's not working next one right and the same for this and that is really something that at a certain point and I needed to do it for myself right when I was going to a specialist for me I was sitting there looking at the doctor how he was treating me but also beforehand when I was on the phone with them and I just went in to my appointment to let the doctor know that he doesn't run a Walmart I'm not going there to buy bread I'm going there because I want answers for something serious right and I was so proud of myself afterwards because I was like okay and now I can go to the next specialist because I know he will never forget this conversation it was respectful but it opened his eyes for sure he and the nurse were literally looking at me like what's going on and yeah I really could be more appre of you coming on and sharing that with us um we're gonna link your LinkedIn of course to the video so people can go on and learn about it as well as look at the books you've read and the videos that you've made yourmd articles I'm going to be looking at some of those myself so I really appreciate you coming on thank you so much of course you're welcome and thank you for having me of course</p>