Arkansas PANS/PANDAS Advisory Council

Ladders we can't shows that you're muted on this sand and if you've been asking me to speak I haven't heard a word that you said. But okay good we've been talking about you such good just hang on though we'll. Yes hang on we're gonna get our technical difficulties figured out here. Can you all hear us now. Now we can hear you thank you Sir all right to what we do in the call of your name and and just waiver knowledge make sure we've got everybody right okay got Les Warren represent less worn to my right to sue Tedford over here to my right. Got up Michael of got Michael up there very good and then Natalie are you on. Natalie Bradford. Wave your hand if there. Not only is not going to be on today okay. Are you taking her place okay no all right Matt Rumley. Paisley Butler. actually Collins. Khalifa do. Kathy Puckett. I'm here are you a Debra Reis. God answered after over there Dan honey. I'm here okay and Dr Joel Tom Wilson. Very good and. Who have I not called. Joe clout Joe clown okay. Joe is thirty years younger. All right who else are also joined yeah we're joined today with doctor Veronica rainy from from you M. S. as well from our clinic your doctor rainy I see now okay and then we have our nurse Sandra Bennett. Very good okay as I missed anybody. Okay very good well let's get started then I appreciate you all being here we had to adjust the schedule a little bit because of the special session them because of the meeting of the hall and I know we talked about trying to nail down on the Monday but I'm just going to be the next month or two run to the best we can for that but we're still actually in recess and we've got to deal with redistricting we've got to deal with a couple other legislative matters including some tax cuts we're gonna try to hold to the time we said we would when we had a meeting last time but unfortunately we're kind of in a state of flux right now as far as this the legislative branch being able to you know me on the times we hope to be able to meet so just be patient with us but we're keep working as we go co chair Warren you have a comment sir all right so consideration for the approval of the June fourteenth of meeting minutes if I could get a motion and second to adopt those please. I got suited for on the motion and then her cat the. On the second all right any discussion to the minutes. On favor say aye. Post. All right now C. update of the university Arkansas medical sciences Michael Carrick institutional relations ways on and Michael Moore yield to my queue if you would just kinda speakers large can for the rest of us please. Yes Sir I hope hope this volume works well and if there's anything else we need to do just let us know when we were last together one of the things we were excited about was the upcoming editions are seeking a clinic of our new nurse sandy Bennett sandy has an extensive background in nursing nursing leadership as well as quality issues and because of those that her unique combination of skills center as well as just her as a person she has been an excellent addition to our team I'm excited that she's here today and and grateful that and she is here to introduce herself up to this council and to the people that are here doctor ready if there's anything that you would like to add prior to saying to speak and please feel free to do so. Well I would like to say that Danny has been a great addition to our team and she's definitely our communication with families in our primary care doctors so I'm very excited to have our our team. Andrew this is your opportunity to share about yourself if you would and have a few questions don't worry or don't be scared of the committee we're all here to help each other and help kids so relax but a few on here do shall tell yourself tell a little bit about yourself just or we kind of get a comfort level and then we might have a few questions for you. Good morning thank you everyone for inviting me as they've already said I'm saying you didn't have any UAMS nurse for thirty years with over half of those years in nursing leadership and hospital leadership. I cannot begin to tell you how excited I am to be part of this group and to be the new CPAP nurse care manager. This role is already usual using both clinical knowledge and leadership experience in such incredible waves you all have done a fantastic job and I'm just joining the team. My role in this spot to disciplinary team begins is the point of contact for the program. That contact can be the official start of intake or simple information gathering from the family. Last week date for West Memphis found this on the internet called to see if maybe we could. If we were something that you wanted to consider for one of his patients and we had a wonderful conversation and I've exchanged a few emails few weeks prior it was an email from an out of state parents the ultimately she shared photos of the family. My role begins by laying the foundation with that family so that my docs can accurately. Diagnosed and gather information to make the best diagnosis pop. Over the past few months I've had several opportunities to interact and work with the staff and the team from banner health in Arizona. They've given me an opportunity to observe one of their full clinic days. And in so doing we were sharing information about their clinic works how are clinic works and how we can benefit each other with with my background in different training things that I bring to the table. The the CPA nears of the inventor has already with the fast friends and she's got me on speed dial and so do I so. What can I what can I give you to. What you get to know me a little bit better. You're thirty years of nursing what is your experience that makes you the right pick for the job. To be able to receive people and appropriately handle the information is given to you. So that when those above you look at they're not looking at it slanted or maybe with a preconceived diagnoses so that it can be handled truly on the merits of the need. Absolutely. Probably the first thing I bring is seven years of experience with staph Education and part of that is. I have a brief solicitation certification so I'm used to dealing with families in crisis. Most recently I have over fourteen years in quality management where chart review and gathering facts and putting together the the chart and objectives clinical data elements for unbiased review has been where my expertise is lame. Do you you say that you've been out to Arizona. We have done virtual there is a plan hopefully in early spring or. February issue to to do it than in person visit right now hello majority of their patient visits are virtual and so many joining them virtually has been the best opportunity at this time. Are you seeing anything that they have in their clinic that we need to make plans to have placed in our clinic in order to. Help us a B. as proficient as possible. Actually I think our clinic runs a little bit smoother because we have a. We have a multi disciplinary package with doctor raining Dr you're Indian. That. It crosses so much expertise that they are using about four different healthcare professionals to deliver the same. That I have already witnessed with our team. Senator Hammer one of the things that sandy mentioned yesterday that that banner and and their team is made available is there repository of information all of the things and sandy can go on more about this all the information that they have that they utilize in regards to their systems their processes their forms are all readily available and for sandy two years and send you to have a little bit more. Certainly. Jessica west who is their characters she is working already with the center of excellence hospitals to create a box account for all of us to be able to share documents until that box is available she sharing by email and so am I. We have already adopted and or modified some of their documents to better fit our unique population in the south. And why have already been able to share the the bad time pass document for patients that have asked for it it's it's just a real many collaboration to be part of that group and I am very excited about being able to liaison with other hospitals because I mean just because already said that she wants to borrow some of my backgrounds from bereavement facilitation because again these families are in crisis. Represent warrant has a question. Good to have you on board sandy I just. At I'm taking it this is something new with the specific nature of this so tell me your biggest revelation with the pandas pandas population since you've been on board because we A. as you will find out of work or board member sits on soon with you is Cathy Puckett I have a very close connection with that family her son is one of the people that I've watched go through this mega ballet so I really want to. C.. What kind of revelations and. Health. Excited I guess you are. What you're proposed going to be. A lot of these parents just wanna be her they want somebody to acknowledge that what they're seeing with their kid isn't what they saw with their kid originally. No I wasn't making nurse when I started my career in a lot of those parents they understand that because of a premature experience their child may have. Challenges. These parents had what they would consider. A normal pregnancy and all deliver a a normal start to their life and suddenly one day they wake up and things aren't quite what they had. And they're frustrated they're scared. They're scared they're scared and I think that any gin. My foundation laying with these family even when the intake process starts I'm making phone calls and sending emails I'm interacting with these families not just. Information gathering that relationship building so that they see us as as part of their solution even if we don't give them the answer that they want or that they think they need we can at least guide them for the answers that they need to be able to take care of their kids and that's what's important. Did I answer questions. That's great I look forward to the work that you're going to do. Thank you. If anybody else has a question all right go ahead with go ahead. I just want to stand M. excited that you're on the stand I am I am a parent who's been in that crisis place as well I've had that child at the gate not knowing whether my child was going to live or not. I'm and that was before we had anyone here in Arkansas so I've been there I do want expressed the concern that I have with the clinic and any I am. Through the grapevine I've heard phenomenal things about you already because I I do talk with parents that are going through this and then there crisis places and and what their experiences are with calling the clinic or what they're doing or how they're going about and I recently have a family who has tried to deal with the clinic and this is before you but it was in the last couple months and trying to deal with the clinic and it was so put off by everything is now flying to Arizona to that clinic and but through the grapevine they heard phenomenal things from the nurse in Arizona because they actually go next week they heard with the nurses working with helping you like because they obviously love her out there as well so we I am getting some like back door information of like what's going on with the clinic as well and I know copy is as well from different families like that are going to different things so I'm just hoping that changes for families to our families are having to go out of the state still lake I I'm just concerned that we're this far into this and they're still feeling defeated here and so I look forward to you helping change that. Well I just want to you know throw an open invite out there you have my number you have my email. I am available I can send my kid teams I can do whatever you want to do if you're getting negative feedback give me the opportunity to do some service recovery. Has yes the word is getting out that there is a new person there is a person that actually answers the phone and the physician from West Memphis it was like I wasn't expecting you to be opened I thought I was going to have to leave a voicemail and I'm like I'm here what we need what we what we do and what with what's going on and so absolutely I get I get the initial point of contact from a number of ways it can be faxed referral it can be a phone call from a patient. I've had patients email me just called and say I'm looking for help and I'm like give me the phone number and I called back and we have a conversation. With our distance world this meeting being an example virtual interactions like this give you an opportunity to see face to face to to hear the town to see the body language and I'm I'm willing to do that with our patients even before we actually see them in clinic so that our patients feel heard. Because as a parent. You want to be heard and if you're the strong if you're the only advocate did you feel like your child's got that you get louder and you get you know you get that mama bear that's okay I can handle that let's talk tell me what's going on. I appreciated that and I know the parents to. Dr cloud. I would be interested to hear some of the specifics on on where we've dealt with the clinic thus far from this back door information what what what are some of the failures where were we going wrong. Well doctor Clara I thank you one of the things that we have now with the with the nurse Pacific Lee and it's in regards to coordination and in regards to communication I think having standing in place now one of the things that her background brings not only is someone that is familiar and able to fulfill that role but she understands systems and processes and is allowing the creation and fulfillment of its new systems and processes to where we're able to better communicate on the front end we're we're better able to process on the front end and and better able to interact and follow up and communication additions and I I think that was a skills you know I think that was something that needed to be done and I think it's something that we have done in that we're we're already seeing improvements five I would referred to doctor rating if there's anything that she would like to add as I probably should deferred her to start off with I apologize. You O. there is only so much time that doctor here in the United at in the county on the communication coming to rest with their work they should. Interested in clinic and some of that we didn't have anybody else that it was very divided in terms of. Thanks one person check backs one person is on one person yes it was very divided that and so there we've discovered since sandy got your that there were some referrals that everything that all of that one we weren't aware of that we're never thought twice. Question. Kathy. Okay my question is sending us to meet you at the private mother of a XMB twenty five year old turns twenty five this Friday diagnosed and since twenty sixteen my question to you More so on the adults are at the clinic as far as you be and do you feel confident that you're going to be able to handle the overload that may be following the come again I mean is there are a lot of parents makes the along with the family right now in Houston Texas that is actually out to try to get them some help So we're not just deal with the Arkansas. Patients were dealing with us the surrounding states that are actually starting to contact needing some help as far as even Cameron we're still trying to get down the I. B. I. G. because when at before. The doctor that was previously at Arkansas children's hospital left over the Arizona clinic he actually diagnose Cameron that's probably one of the patients that we need out the algae every six months to one a year we're going on three years now Hammer has had an IP I. G. and we are definitely backsliding going into crisis mode. I sent you yes what's. Is your experience with. Channeling these children getting them into the clinic as soon as possible what's the time frame from contacting you to get them and explaining knowing the status of your background and what has helped in the past so long as the transition going to take in order to get the all the appropriate treatment needed for this specific patient. That's an excellent question I'm making sure I'm not needed okay one of the things that I'm doing right now with with some of Jessica and Arizona's help is is laying a foundation out to handle an influx of volume because currently. You know it's it's it's been a small clinic and it's growing and it's going to to grow as word gets out that we exist I do not have a firm date right now on from first contact to intake to scheduled appointment that is some data that I plan to gather again this is the quality nurse coming and going I can't make decisions without data and I don't have data. I will defer to doctor ready to to talk about you know the the processes and the implementation of that. But my goal is once that initial intake is established I'm going to be making at. At the very minimum calls every two weeks to touch base with those families to see if things have changed to see what their PCP is doing because we can't intervene until we actually see them but knowing what's going on with the family helps me to triage and to adjust based on individual needs. Seventy cents yeah and follow up question on that if I may serve. As far as dealing with doctor of the year he's the one that that cameras actually stay at UAMS because he is the adults arguing communication my doctor call the airports you stay on the cases that he is currently involved in. Again I am the gate keeper I I do the initial once they turn over to doctor clothiers practice. They're they're in the adult world right. Kathy we're going to be your you may have seen the agenda we're gonna talk a little bit about the adult population on adherence second instance things that are going to be taking place. Okay. Let me ask questions about the data what what data points because the clinics been up about I'm working off memory about a year what data points have do we have now. What data points do you plan on implementing because one of the things we would like to have at least as often as we meet is the number of patients that you see the conclusion of what happened to those patients whether they were kept in house for treatment and are getting ongoing treatment or they were given other diagnosis is that dismissed them from being considered as a pander pandas patient just so we can you know track some of the successes and also identify some of the needs so can you talk about the data systems the end data points that you're going to be collecting. Senate vote before you jump in there senator would you like for us to see some of the data that we of that's the next item on the agenda we do have some data that we're we're ready to present and then we can follow that up an answer of your question and other questions that may be there and Dr raining may have some additional information as well what we have for we have to present okay okay what I'll do yes hold hold that then and let me ask does anybody else have any other questions up for Sander. Okay the unless you want to it's going to be titled exhibit C. two on your agenda and who's going to take on this is you Michael or who's got up to the presentation yes our I'm I'm in the process of sharing my screen hopefully. And. You as my so are my slide showing they are yes yeah okay. Good deal saying if you know if you'll get started and doctor ready and feel free to jump in and as Senate is presenting their standing have all four two thousand and nineteen and two thousand twenty this was all. These pre my involvement so Michael if you'll go ahead and ask the slot. We had ten patients in the State of Arkansas that were seen by the clinic to patients from outside of Arkansas from Indiana and Louisiana. They were all seen I think that was a little bit of clarification that there was a question. All of our patients are seen in the clinic and assessed we don't dismiss anyone just based on chart review are reporting my physicians actually assessed based on the games criteria and make better recommendations from that. Next slide. I joined about mid June and so as we look at the twenty twenty one day that I had gone back and captured everything from January forward and started rolling in our current patients next slide please. So far this year we have seen fourteen patients were last year was only twelve. And four of those are outside of Arkansas and the temptations that we have assessed have all been from the western side of the state I think that's important for you to be aware of as you're looking forward as far as increasing awareness of our clinic and the direction that we want to go. As far as getting the word out because the west side of the stage seems to want to kind of be aware that we exist the right side not so much next slide please. So currently our intake process as I said earlier can be anything from a referral or a phone call or an email what happens after that. Julie triggers the intake process I have several rating scales that I send out I sent a welcome letter I sitting down what they can expect up to what I need and we start communication from their. That happens whether it's a pediatric patient or an adult patient the adult patients of course I do differ over to you a mess. Proper and send those through doctor clothier and his team. As I also said earlier we are beginning to increase the number of patients we can see. We will be facing that end as the rest of this year goes to a goal in January of two full days of clinic. But while our patients are from the intake moment until they're actually seen they're getting calls or emails by me. And if they call and say Little John your little Suzy has had a flair okay tell me what this letter looks like tell me what's going on do we have a new evidence of an injection for what what's stressing what's happening so that I can you know put some information together if I need to I can bounce it off of doctor Ranier Dr beer Indian they're they're handy communicate daily. And we can make some clinical judgments as far as getting them in the clinic getting them seen by their PCP there been at least two patience this last week I've said please go to your PCP get distressed stripped as and let me know what the results of the strep test or. Both of those patients. Deferred to either not get distracted ask for when instead they wouldn't do is stretch S. because Little John your little Susie was was having a meltdown okay if we don't have a strep test we can't do anything we don't know what's going on and so. Understanding that that is happening will also help our doctors make the best decisions that they can because what I'm learning in this is the big aha moment that I've had lately is it's not just what we know it's what we don't know so there's a rule in or rule out of this information and the information that is normal is just as important as the information that is not quite summer. That makes sense Okay. One of one of the grass to you're going to see as we continue to provide you data is the clinic volume and so you will see this graph pretty much as a footnote on all representations so that you can see it climbing as we go. Additionally I have information about. how many boys how many girls how many under age and how many over the victim and things like that. I do plan to collect data as far as time studies. I do plan to collect data as far as. Outcomes and patients that were following. But again it is it is almost impossible to gather some of this data retrospectively because it wasn't collected. And so that is again where my quality background is is limiting itself to the role and the more familiar I became with these patients and the more familiar I became with you and your wants or needs for information that will guide me in the data collecting as we move forward. training services or anything you would like to add to what sandy is presented any further information or. I think that it sees out thank you job present summer summarizing this what we have to be careful that in an actual assessment it's not. Not just a question. What we actually want. Let me ask you a question the other ones are the are these the ones that were actually presented. To the clinic and receive treatment or these are the total number of those. Presented. Hello number that that. Okay so since we started this. one. Twelve. By twenty six patients have presented. Okay. Does that include. Those patients that maybe were initially screened by a doctor rainy and Dr panda and. Word determined to not have been diagnosed as pander pandas. All. So these numbers to include them. Yes okay. A questions from committee members. I have a question okay go ahead. We have a number of how many have been diagnosed out of those numbers. Doctor stated Dr ready do you have have those numbers. I know there was some I do okay. We. Two patients that were confirmed in two thousand nineteen and two thousand twenty based on plans criteria fully meeting criteria and we had to patients in twenty twenty one so far I have also met full criteria one in Arkansas and one outside of Arkansas so total since the clinics started up for patients that fully met hands criteria. You think you could just have a chart to reflect that and give us to show us how may actually have been diagnosed by adding up of different colored bar on their. Yes Sir I can do that. Represent one. But I may be asking the totally. The. Out of line questions but I'm going to ask. Of those that are diagnosed. And maybe we're not there yet have any received the I. B. IG treatments. Yeah. I'm sorry to doctor ready to ready you feel. We'll and In that you know it's going to be the whole process of getting market we also had a student that did not meet right here and that we also advise that they get I thank you for. Satellites. Yeah. You're right. I have trouble hearing so I'll have to get someone to help me with that. But did you say that. There have been you might need closer to Mike please there however there have not been. Cases that have been determined. To be diagnosed panda pandas that have received the IV IG IV IG treatment. Yes there are there are. Okay. Okay and then. Of the ones that were not treated were not diagnosis pander pandas. What happened to them. We will why. Referrals for. Contact information for them to be able to get that work what we see what we diagnostic. Actors there are some that don't quite we right to answer he does that we suspect there's something else going on that would benefit from my PhD so there are times that idea that you hated they're not sidewalks and also it's fair that we use what we don't use a lot of I'd like to see but we have. Watson said. Okay so again another question Michael this may be more directed at you but I'm a little bit confused. Kathy it brought up a question. And I thought that when we went through this presentation that that was going to be addressed if it was I missed it. I'm I'm understanding that. The clinic that we're talking about is younger kids. Maybe I'm wrong on that. Is there a coordination. Between younger kids. Treatment and kids like. Cameron. Who came in later had the symptoms earlier. Is there coordination between. Yes yes younger adult population and the kids treatment. Thank. Actually address that if you want me to place Senate okay. Kids with cancer pandals they're gonna have this lifelong risk of flares and they will age out what children's is a **** you provide at about eighteen. Many of the children's clinics that can support. They age out the UAMS can pick them up and so I have had several patients that have either been diagnosed somewhere else in the country have reached out to me and they're now being followed with Dr clothier in his team. Because they they are aged out of what children can provide. Does that help answer your questions. I would like. And just just to add on to that answering in this kind of jumps and has to the next item we're we are aware that this act II as we are with the pediatric program that the service that we offer can be better so we are in the process of evaluating further what we do for those that transition from pediatric to adult cases how we can better be of service how we can follow them make that transition better and in fact we're we're coordinating an internal meeting over the next couple of weeks which is a specific goal in mind of when this committee meets again to have a plan in place to where we can again the infrastructure in place similar to what we have for pediatrics available for adults. Hey Deborah did you have a question. I have a question I'm not sure if that's Deborah who go ahead. This state my question concerning that is you know cameras then on the pans radar since his diagnosis we got September twenty sixteen from doctor. Colossal in Hinsdale Illinois and with that prior and a specific diagnoses he was diagnosed Nancy Davis Cameron's first initial I. B. I. G. we come back we went to children's follow up with the doctor that they actually had on staff there that is currently at the. Yes doctor now appears on the planet just to make the long story short and Cameron has all these documented Jean you to say sense there is a lot of stuff in his medical history that serve what a quote that's cool the air is aware the genetic doctor there UAMS is aware of the neurologist is aware of they know that Cameron qualifies for of the I. D. but yet nobody is willing to prescribing the IPFT that kicks Caremark friends and your response back to a stable base because one Cameron get set his normal viral overlook and whenever that gets too intense we get. The specific psychiatric issues with its unfortunately can be. Violence or it can be told withdrawing from society and I'm just not understanding why cameras kind of been like skirted under the rug. at the rate of mass with them having his background. And every document and medical records which is about four. I thank three binders of medical records and different things that camera actually house along with him I don't understand why we're still having to fight to prove that the ads he brings camera back to a functioning. Level it is that make any sense any of you guys I mean it's it's just like I'm not. We're going all the doctors that you a a mask that we keep getting bounced around and nobody's willing to prescribe a treatment that actually brings him back to Watson. Yeah I I I I I want to offer this and and sandy can slap my rest later for doing this but I want to I want to ask that we let sandy get in touch with you okay and and begin to see what what possible solutions are and just kind of walk through what we've heard today and and sandy and okay I can work with the doctors and and see what what needs to be done that way I think that. I think that would be the best way for us to work through this Michael I don't want to the overstep for create any issues or anything but I would just appreciate being kept in the loop as Kathy and her family are constituents of mine I just wanna. I have watched it will go on for years I would just like to stay in the loop and make sure that this gets addressed. Will will be happy to work with you Sir thank you for thank you for your interest and and. I've just your your passion and working on behalf of your constituents who I know is more than your constituents the he is and and I want to say that I have watched when he is received the V. I. G. the old Cameron is back one hundred percent or very close so thank you very much. Thank you Sir. On. Yes rainy. I just wanted to live correct what's up this section of our terms of. The doctor that I think that I could not be required to stop right. What are at the rate that we collaborate with some of the Senate different banner hospital so. Yes record I just wanted. So one one of the takeaways from today in regards to additional data is one of the things you have standing is going to be gathering more data points in regards to some of the things we've discussed from a quality perspective but also specifically you're wanting numbers in regards to those that are diagnosed is there us other specific data that we need to make sure we include all lanes okay let me ask you. The let me let me hit something the the blue bars. Represent the total number of patients presented to the clinic is that correct. Yes okay then what we would like to see added to that is. A bar that shows the total number of Patience actually diagnosed with pastor pandas yes and then I'd like to know a third bar and that is the number of patients that were diagnosed with pandas pandas and were they given I. V. I. G. treatment. Okay and I want to just pause and ask if there's anybody else that thinks there's any other data points we ought to be adding Deborah that you see I. I I believe another data point we really need to state as a percentage of. The actual percentage of who we're seeing to who is diagnosed compared to the other clinics. So our overall percentage of confirmed cases compared to like the Arizona clinic what is their percentage based off of what they're saying I want to see that comparison data just delay how on point we are compared to the other clinic. We'll check point and say that's that be an interesting thing just saying not only in regards to Arizona but the other centers of excellence that are I agreement will state I think that will be very interesting for many factors. Yes Sir Chesterfield. I want to also know the medications that are being use besides ideology. If you here doctor doctor center Chesterfield like to know the other medications that are being used if they're not receiving the IV IG. Or in addition to the I. B. I. G. and and we don't expect to put patients names now we understand that but just is that right percentage Chesterfield right that is correct because I'm hearing that there's push back from some people using the ideology which. Your research is shown has been inspected what they're gonna be using something else I just like to know what that something else he is and why. And the efficacy that has been shown am I making any sense to you. Yes ma'am all right. Medical interventions for the patients that are diagnosed with fans and it's say that again Senator look closer to Mike center that's the new nurse. Interest you. To clarify you only want the medical interventions for those for patients that have been diagnosed and we're treated with Japan's vandals right if they're not being treated with IV IG I'd like to know what the other medications are that you found useful and what is the efficacy of the result at the efficacy of of of that treatment. And it me apologize I literally walked right out of my shoes this morning try to get your so mentoring the Morse I apologize for the late but I am particularly interested in this and I'd like to know thank you so much Mister. It's better than walking are you closer Chesterfield so. Our live stream of for us no. Okay any other data points that any members of the committee. Thank that should be added. Senator I appreciate everyone's input this work in process and a work in progress and so I'm no that I just want to remind everyone that when we met the last time we were anxiously anticipating an exciting excited about sandy's arrival she spouse part of the team and she is has the ground running in fiscal year but there's a lot to be done and as we continue to work through all of this is we're gonna learn and we're going to continue to to do better because sanding is a process improvement quality management guru and she won't she won't do anything without it getting better as she does so. Dubber. One other thing about that state representative needs anymore under played as or all three more stuff Act thank you But one question I have if we've done it or if it's something that can be implemented do we have any follow up survey specifically for this clinic that's very specific to how late do we have any of that that of like what families are saying because I I know as an advocate here in the state like I get some of it. From the parents but I'm curious what we're getting directly like in the clinic for that. Excellent question and I'm very happy to report that one of the first. Using one of the first things I did after collaborating with doctor Rainey was I reached out to the confirmed hands patients by phone and asked him how things were going and you know we didn't have anything formal but since then I've had. Two of the four actually three of the four reach back out with things are going good or we had any flare or any like that to reestablish communication in connection with our clinic well even more though than just the once they're diagnosed just about the experiences themselves in the clinic because whether they're diagnosed or not let me get some of that from them and I'm curious what you all are getting for that those things whether it be you know this is what I struggled with in this this appointment or this is you know what I liked about this appointment this is where I feel like I learned this is where I feel like I was left without any information I think the only way you can improve the clinic is knowing even diagnosed or undiagnosed what people are feeling when they're walking out the door instead of them coming into the general public in bashing the clinic which is what is happening some of the time sure what. Yeah I think kind of a clinic experience surveys and for lack of a better phrase is what you're specifically asking about is sent yes I just everyone sure I think that's something that we can we can works Revenue and see how we can put in place I think that's I think that's something that we can add to our to do list. And I have that something the state if I can please sure. Yes that one thing with dealing with the you know like Devin I with your applicants and we try to help the parents along this journey of one of the main things that I get asked almost on a daily basis is when my kids get so out of hand. Crisis mode whether they're suicidal on the homicidal I mean this is what we have to list I mean it's a twenty four seven suicide watches what I ask as parents have to go through when our kids go into the bat you for. One thing that I want to put on the. Scheduled to try to figure out is where is a safe place that the parents can take their child because you're talking about is anywhere from the eight. I started out there five years old all the way up to thirty years old I mean I know Cameron has had unfortunately six site states and several different. Psych wards around Arkansas and. The one that we had the best results from and that all are I'm not political sand pants and is friendly but were opened to help while he was in there is rebel I'm not sure if you all done any research concerning which site hospital would be a safe place to take these children but I would like to throw that out there that on the schedule for us to try to figure out if we can get any specific psychiatric hospital on board that can take these kids knowing that. It can be you know their site symptoms are brought on from a virus bacterial infections viral factor I just really think that's something that we really we really need to probably work. So I just kind of wanted that out there there thanks to do. I appreciate that in a way that's how we learned what what we can do better and what's of interest is is from hearing that and I've I've already written it down as and we can discuss it. Thank you okay as the other but a to what we'll do and Michael and staff family here what we. Might work towards getting some of the. psychiatric hospitals or get some of them in at the next me to here are some of the testimony and see if there could be a specialized unit that could be created emergency response unit where parents would know that they could take them there whether that's working in conjunction with one of the partners of children for you M. S. working with passes maybe but if we just come up geographically with some. A specific locations that they would be maybe certified to receive these individuals that maybe show that that out breaker that there had that crisis. And I have not to jump in there but I know Sarah McLean at she actually works at Richmond Dale and I believe she's in a she's only like in the admissions arts but she has been a great help every time we tried to take camera in she knows the Wallaces very well so they know you know Max's story so are you maybe want to actually reach out to you to see who would call and specifically from Redmond out you know to speak to the C. we can get on board with that specific site facility. I'm just reach out your and I know she's down our neck of the woods want to reach out to your. You handle that okay. And then a with family in Michael. Okay okay we're getting up on the eleven o'clock are we got a few more things to go on there is one of the bill on the data point collection. And let me ask doctor rainy this doctor rainy when when you see a. A patient in the clinic and you have determined that they are not pander pandas. Do you make a determination is what you think the diagnosis is having a having removed panda pandas and do you refer them out to another clinic. Yes. Okay. Could we get as a data collection point. What those other. Diagnosis were. Just so we could have that for the educational where I'm going with this may adopt cloud could you know weigh in on it is because he's he's over the educational committee which will talk about in a minute but. You know if if we're out talking to schools were out talking to individuals it might be helpful of. We were able to say some something some kids present as this when in reality it's this and if we can start keeping that data maybe that would help us down the road be able to give a truer picture may that's not good maybe that is I'll open it up to you experts to see what you thanks. It in fact we have been collecting data on that. So we can present that we need to next month thank you for okay. Any other discussion to the data. The clinic data referrals. Okay. Next item is a exhibit C. three. Which is this session The New clinic brochure who's gonna have a gente so on. Yes Sir let me let me pull that up real fast for. We we do have a new brochure that we have that I'll scroll through quickly here again we are very appreciative of the folks at banner health and it's university of Arizona for their collaboration on this this is one that specifically geared towards pediatricians it's able to slide modification I believe be able to be utilized by family practice physicians we have had discussions with the department of health that serve as soon as this meeting is over there willing to collaborate with us to get this information out through their organization to all of the pediatricians and primary care providers throughout the state I'm kind of scrolling through here just so everyone can saying there's a copy of it that's available that again for your review we have again this is a little bit broader in a little bit more detail than what we have done before before but it is something that we're we're excited to have available and ready to to send out to the people across Arkansas and then eventually throughout the throughout the south. Where do of. Where do people find this online. Hi there okay that's a great question hang on just a second there is a website let me find the website on the. please. Last eight. Thank you. Thank you for answering. Just scrolled right past is but email. At. Are you referring to the email. Yeah I I thought that was what. Sorry the. Yeah I don't I don't see that website on there actually. Back that will be corrected before it's distributed. Yeah he was right there UAMS is your M. S. how do I am else that health slash EPA. That's going to be put on the front page. Your questions got it. They want a snake okay For. Yes some of their questions I I have a couple questions I went on all like our CPAP websites and everything or we can update our information to have more of this information on our state because our states are really not helpful. Yes including the Arkansas department of health. Yes they have they have agreed to work with us and this is kind of the the building block that we're that we're using From this and then it'll be it'll be a new or an a and R. for lack of a better phrase of of better fresher one okay yeah because we're late night and day compared to Arizona's clinic with information and and really there's no information that really helps educate anyone on our resources currently. This is this is step one in changing how do we know when this handout will be available for distribution. this will be available for distribution as soon as I'm able to get in touch with the director of communications at the department of health allow them to have one more review of it and unless there any further changes this'll be ready to go. The reason I'm asking is we're doing some awareness stuff next week some of the parents and it would be great if we have this. What I will what I will do is I will make certain a. This is this is about is final to the final as you can get without me saying it's final correct. Okay. You're almost nearly final. So we next week it would be yes ready to go yes and I will make sure that you're provided a copy okay great. And Michael if you send that to Emily she pushed out to all the members for. Any quickly and. A question for you Sir. Is there anything in here I'm scanned real quick where is it in here that if you got somebody that's eighteen and older they know what to do specifically to get them the help they need or is it just kind of meshed in with everything else this is this is specifically geared towards pediatrics there will be a second brochure created specifically for the adult population okay and we could expect that when next meeting. Yes Sir okay represent one. Michael I'm going to have my Committee that deals without reach stay on S. R. conclude this could you stay with us because I would like to have your input how we get our hands on on this and as far as. What we want to get get it to It into their hands so. Could you stay with us afterwards. Absolutely Sir yes Sir thank you. So this is going to go out what just. Leding in the question that represent Warren just asked what are the already prepared delivery. Methods that you intend to use once you get the final stage so that this can one thousand. Once we're past almost nearly final in your final bill Senator we will be working with the department of health they have and Dr Thomas you may be able to speak more specifically to this but they have a communications mechanism that gives information sent out throughout the state to all providers they have graciously agreed to allow us to use that that's going to be our our first opportunity to to communicate and secondly October is hands pandas awareness month we will be utilizing that months again to further generate awareness again thank you for a strategy in regards to that were we have thought all the way through that but we certainly will be be working to to make sure the public has a greater awareness of of of pants panda and then. You know when one of the things that we have we have not done that they have done in Arizona in Arizona they hosted grand rounds for all of the. Free for members of the medical community what we have discussed during that and I think one of the things we need to do is we continue to generate the awareness is again specifically focused towards the clinical community having a grand rounds opportunity for them to to hear and learn and and ask questions with some of our experts. Okay you represent warrant and I just curious if you got up of direction go one of sure she tapped for good. Once a valuable connections with the nurses and School nursing and all that stuff absolutely represent okay That the anything else on the brochure. What will center upon my own. This is the consumer may be age. I think what Mr check is referring to is I guess I guess he's been discussing with our director of communications that the health alert network Undescended out you know we we usually send out things about an emerging health threats lots of things about covid is what that primarily being used for of late that does reach a fair number of people but it's an opt in system so providers of different types of had to you know sign up for it so the reach is like I don't want people to think this is going to get the every medical provider in the state of Arkansas because it doesn't one of the other things that we could also do that I think Mr cake was was implying what he was saying was sending to different medical professional group your specialty groups like the Arkansas chapter of the of American family physicians that I'm a part of or the Arkansas chapter of the American academy of pediatrics and see if they're willing to send out a brochure includes things about that maybe in conjunction with October's awareness month might be a good opportunity for those kind of things but we we also have to resort to sending them out to different specialty or medical societies to get a wider reach. I thank that substantiates it represent warning his committee's gonna be very busy finding all the outlets that we can push this out through including I mean I'm I'm all throughout their churches and senior adult centers and daycare centers and everything under the sun because there's not rock that should be left unturned as far as getting this pushed out there and we'll leave it to the creative juices of represent worn in the committee to to to help push it out there the end that does bring up a data question so let me go back to you real quick Sandra. Not to overload you too much But as we start pushing. This information out and we start getting referrals in do you have in your data system or can you build into your data system to identify which clinics for which doctors it comes from because for every doctor that refers or every. Referral we get it's an indication we've got a believer that they would be referred it out and we've got to build the image in the state that the medical field will embrace this is the real deal and and get some people convention can you collect that into your data system or is that we've got to push you to your limits. Thank you include that of. Let me talk through with doctor any doctor of your opinion the best way to collect that but also protect the patient information and see what I can do. Okay if you could report back because it it also help us from duplicating efforts there there shall be a collection point at which if we're sending out to all the pediatricians in the state in which target referrals in from them we may not need to spend our time for those that are sending inconsistently we need to work and that takes me to doctor cloud who's in charge of Education Committee a about the task of educating providers that this is yeah all the real deal and doctor cloud do you have any thoughts at this point as far as and and I'll put this up to Michael and Dr Thomas and Dr rainy as far as what we've got to do to educate of not only the public but also the providers that this is something they need to they need to consider Dr clout. Yes sure I think that a doctor Tomlinson it on what we need to do as far as getting the information and out to those providers that are going to be seeing these children and adults so my first thought is is we can probably work through the Arkansas medical society and target some of these groups and and try to get some information out the question I have is do we have resources. if we develop some kind of flowers male at out or something like that. I think a lot of this is good to be able to be done electronically Dr Klaus and Can be done I have been vision not only their brochure being made available but the opportunity and working with the. Arkansas academy of family practice the academy of pediatricians possibly have and you know newsletter. And I have an article in your newsletter or you know just just different things like that and also making publication available for them to distribute electronically as well. Just a. We don't need to be some sort of. Opt in we we need that information yes Sir to the yeah yes Sir. Represent one. I would also like to throw out growing up with a family physician that. We and I know that this is COVID time but when we get to the point that we can maybe our committee in connection with UAMS children's could maybe set up a table and no and annual meetings with the Arkansas Academy of Family physicians pray pediatrician said the same thing we could set up a table and just have some of this man the table during their annual meetings. And have discussions. for awareness and just have our flyers there but at the at think there's several things we can do I mean you know we can get it out let trying to Klay but when they see places you know order what are you doing here. The. Representing this so I think we get we can really and we'll talk about that with my group here in a few minutes but when you bring up those groups I know that they're always vendors there so I think we can take advantage of that so. dubber. Dever. Say another Another Avenue that I was curious if we've looked into is like continuing ad opportunities for physicians like other places because I know that is how we've been getting a lot of education to the school nurses and the school counselors right now like on the front lines as we've been presenting at their annual conferences and things like that. It may also be thought. ACT one idea. Yeah the up I have one thank sure go ahead Kathy. Now I just gonna remind you guys that up next weekend is amplify fast there in in Arkansas and. Every sense Maxwell is passed away in twenty sixteen Beck and I happened to have the pants and is aware of a stance she is no able to do that this year we will still continue to have the bandstand distant available at amplify offense and that we seem to acquire a lot of inquisitive doctors nurses school nurses a lot of people in that field so I just wanted to let you guys know that if we could get these pamphlets by next Friday that when we will be have the baby it's Friday and Saturday at the twentieth and twenty first like I said we've done this and twenty sixteen it's live life to the Max and this the pants and the awareness state so I have debt but not she's gonna step in this year that to help take over and we will be sitting there giving out information talking to parents and letting them know more about that so I just wanted you guys to be aware of that that will be happening next weekend. Michael you take your chance we get so. Readier Sir. Yes Sir okay but thank you all right the animal throw this idea out here candles in the room of yes I know that startled you we had talked about the passes in about their community investment dollars in the past they had offered to put that up on their website so we need to that that be a quick outlet to get it out there to them but. A. Dr Joanne Represent one what we know and what we might do this of work with Kendall to put together a proposal to where we can get access to cut some of those community service dollars for the purpose of promoting and doing some of the things we're talking about if it requires resources sole Michael maybe you could help spearhead that too and we just need to have that collective conversation see if we could put together a request to that they would submit to gets resources for printing or for putting on seminars or things like that. Okay. Okay and can deal with the DHS is going to send her email to Emily so we can be pushed out to everybody and then that way you can share thoughts back and forth okay. Dever you blinded by the light or you got questions. C. R. sandy you sandy okay thought you're blinded by the light thirty wanted to offer to you Gabin Kathy if you will reach out and send me some information about this boot I will look at my schedule and see if I can be available and I can I can come out. At least lend a hand to be presence. That sounds fantastic when we act this is kind of thrown together last minute is it still up in the air with COVID bang if they're gonna have to cancel last minute so this Friday I'm actually go in at Selena more hospitals where we have all of our opinions and this pamphlets that we have for the national. Transcendence let's not stuff like that so I'm actually into Friday to see what we still have in storage I think we're going to try to get the live life to the Max T. shirts that we originally started all this we a have those available to go ahead and try to get a lot of those sold and distributed that weekend before we start in you know I'm help and. This time next year will be able to have all of our clinic information we can make some more T. shirts because this is a wide variety of people from all over different places around the United States actually fly in from an office which is a huge will not rest gender based concerts so it's and it's a two day or Dale that but then I will be there all day Friday and all day Saturday your bill and now I will once we know more about the time frame and all that I'll let you know see the. Friday the twentieth you know of course it got this. The. So a little bit committed their. Five send me the details the CPAP clinic at UA and that study being that original. Perfect thank you will get Emily sure bridge contact information with each other just to confirm all right last item and then what we're gonna do and we may have to do just one of the Commission today because I don't know the system with the zoom capabilities we can split it or maybe we want lease let one of the committees have a conversation and maybe we can set up another one for the other committee to have a conversation all right development of treatment pathway for adults ages adults above eighteen it was kind of hit on a while ago just give us the gives update on that please yes Sir we will know that we're we're in the process and of looking to see how we can replicate what we've done on the pediatric. From two to the adult front I think that's a that's something that in a couple months the next time we get together will be able to. Discuss in more detail I think we we have some leadership that has previously been involved in this that's in transition and we have some new staff that's coming on board that we're gonna be meeting and we're going to be discussing exactly how we we can do better in this regard and so um this is this is on our radar it's definitely to do on our to do list to get done get done quickly. Any questions. One question that I just set up here ask me what is the stance on getting these kids where else. Autoimmune encephalitis is a floppy whatever you want to classified ads getting a public Baxi knowing that. There's not a whole lot of case studies with how it can affect. The mental status of the individual what's what do y'all have a stance on getting vaccinated versus not getting vaccinated. I will deferred restraining Tomlinson and cloud in that order okay they have each have far more medical training then I. All right doctrine thank you put you in the hot seat first. You know there's no need of neurological sexually to not getting you know to getting waited that long timers. At. So I imagine that Arkansans and advance work state more information one official stance. Here I'd say that from a standpoint or even a national standpoint of Kathy I don't think there's any there's not gonna be any particular data that's been teased out specifically regarding vaccine safety and people with prior autoimmune encephalitis just because it's so early in in such a small group you know respectively to the number of people who have been vaccinated it would be really hard to say at this point if someone with prior or means and several I would be more likely to have a recurrence or another on and then after getting vaccinated then then just somebody without that diagnosis previously dark rainy would you agree with that. Yes that We have had some reports from my colleagues are at the end. That they have been started seeing some where's that are triggered by. Kids getting it so it seems like it you can take steps to protect against that as much as possible that would be the way to go. That's a great point guard bringing that you know when I'm having discussions with. all kinds of people about you know. Concerns about getting vaccinated for co good or not should I should I not often on people are only considering the risk of the vaccination causing wrecks wires the well as doctor anyone now we also need to weigh that with the rest of what getting co good game because in this particular case the neurological effects that the infection itself involves. Thank you. Yeah that was my point. All right. Eight any other of any other questions comments. I thank you for being here today for adding to the conversation think we're making good headway and Senator welcome aboard were glad to get to meet you and what we're gonna do is if you'll send your best contact information she may or have it to Emily I'm unless somebody objects we're gonna share back out to the group that way you can be in contact with the everybody we do have the committee assignments broken out on the education we got Dr Joel Thompson Natalie Bradford Missy Irvin which keep missing your senate of any purchase would her mom's having some very serious health issues and she's at the hospital with her she extended her condolences for not being able to be here but she's where family is and that's where she needs to be she tried for and then over on the out reach its Ashley Collins Paisley buckler Kathy Puckett Debra Reis and Khalifa do and representative Warren is going to handle the out reach and representative Dr cloud is going to handle the education course Deborah you'll be kept in the loop on all that as well as Michael and what we thought we would do to finish a meeting today we can't keep everybody on but we're gonna swap everybody's emails with everybody doctor cloud if you send out an email and if staff needs to set up a zoom meeting for you for you to meet with your committee to be able to bring together some discussions will let you work that out as chair of the subcommittee and then of same thing for representative Warren did you want to hang on any of their just get going on the email what you want is going. I was just going to tell the members of my committee basically I've already been sitting here writing down some ideas of who we would reach out to so if you would my email is L. E. S. at H. S. title dot com. If you've got ideas of who we need to get the information out to. Email me your list and then what I'll do is. Put all the list together and send that out to everyone. Give us a few days to think about it and then I'll get a set up a time to get back together soon or whatever. So if you would just email me your thoughts and all compile that. That okay if. fight for wage earner I I would like to thank Dr rainy she she may and some special accommodations to to join us and be with a and agreed to change from what I heard heard second third hand that she thought she could squeeze in thirty minutes and she's been on here for the full hour and a half and we greatly appreciate her and her expertise and we're past this issue so thank you doctor and thank you. It is with me about this. Right. Thank you all very much anytime anybody needs to jump numbers go think less of you but we're gonna put this thing on the plane on the ground for today thank you all for being here look forward to the two committees get in their meeting together and will bring all together at the next one you'll have a great weekend thank you senator. Hey I just want to say this everybody that's on here I mean great respect I I I know we say some things in here but I want you to understand I appreciate the work that each one of your doing so the appreciate what said in here but no that first and foremost we respect the work that our doctors are doing Michael sandy on board. Thank you so much for what you do the this is just like yeah hopefully building for the betterment of of what we're doing as a whole. All right thank you to member audiences center Chesterfield thank you for being here today we're Jr thanks a statute.