Create More Effec,ve Doctor Appointments...Create More Effec,ve Doctor Appointments More than 100...
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Create More Effec,ve Doctor Appointments More than 100 ,ps you can start using today! By: Shani Weber, M.S.
Transcript of Create More Effec,ve Doctor Appointments...Create More Effec,ve Doctor Appointments More than 100...
CreateMoreEffec,veDoctorAppointments
Morethan100,psyoucanstartusingtoday!
By:ShaniWeber,M.S.
� Buildagreatmedicalteam� Havereasonableexpecta6ons� Collectdata� Createagoal� Prepareanappointmentagenda� Communicatewithyourdoctorseffec6vely� TeachyourdoctorsaboutEDS� Understandtherolesofhospitals,theER,yourPCP,andspecialists
HowDoYouGettheHelpYouNeed?
ThereisnotonetypeofdoctorwhocanassessandtreatallthesymptomsEDScancause.Soweneedtobuildourownmedicalteamswiththespecialistswhocanhelpus
feelbeFerandlivebeFerwithEDS.
WhatisanEDSMedicalTeam?
TeamCaptain:YouYouarethemostimportantmemberoftheteam!
ItisuptoYoutoleadandmanageyourteam!
EDSMedicalTeam
� PrimaryCarePhysician:Managesgeneralhealthcareandmakesreferralstospecialists
� Specialists:VariesbyhowEDSaffectsyou–Yoursymptomsdictatewhichspecialistsyouneed
� OtherMedicalProviders:PhysicalTherapist,Psychologist,Pharmacist,etc.
OtherMembersofYourMedicalTeam
Theworldofmedicinehasbecomeevermorespecialized.Hereisagreatwebsiteforlearningaboutmanyofthedifferenttypesofspecial6esaswellas
descrip6onsofeach:hFps://www.bioexplorer.net/types-of-doctors/
WhatKindofSpecialistDoYouNeed?
� YoumayseeyourPCPevery3,6,or12monthstomonitoryourhealthandcareneeds
� Youwillseesomespecialists,likeyourPhysicalTherapistorPainSpecialistregularlybutmayseeotherspecialists,likeyourGene6cistorNeurologist,once,twice,orasneeded
HowOKenDoYouSeeYourMedicalTeam?
� Youmaycommunicatewithyourteammembersthroughpa6entportals,email,orduringappointments
� Itisuptoyoutosharewithyourotherdoctorswhateachdoctorisdoing
HowDoYouCommunicateWithYourTeam?
� Abilitytoconnectdots� Interestinlearningnewthings� Wan6nganequaldoctor-pa6entrela6onship� Communicatorandcollaborator� Transparent� Agoodlistener� Agoodproblemsolver
WhatMakesaGoodDoctor?
� Takeschargeoftheirhealth� Ac6vepar6cipant� Seekssupportwhenneeded� Awarewhenadjustmentsneedtobemade� Leavesemo6onsatthedoor� Comespreparedandon6me� Willingtotrytreatmentop6ons� Honest
WhatMakesaGoodPa,ent?
� Collabora6ve� Opencommunica6on� Honest� Mutualrespect� Maynotalwaysagreebutdorespectwhateachbringstotherela6onship
WhatMakesaGoodDoctor-Pa,entRela,onship?
Getrecommenda,onsfrom:
FamilyFriends
EDSOrganiza6onsLocalsupportgroups
HowtoFindGoodDoctorsforYourMedicalTeam
Someinforma6oncanbefoundonthedoctor’swebsiteorbyaskingfrontdeskstaff.Thinkaboutwhatprac6calaspectsyouneedfromthisdoctor,forexample:� Dotheyacceptyourinsurance?� Whathospitalsdotheyuse?� Aresame-dayappointmentspossiblewhenill?� Areeveningorweekendhoursavailable?
ResearchPoten,alDoctors
Youarelookingfordoctorswhoare:
� WillingtolearnaboutEDS� Communicatewellwithyou
� Showaninterestinhelpingyoufeelaswellascanbeandfunc6onaswellasyoucan
InterviewAppointment
Youmayhavespecificques6onsyouwanttoaskthedoctortohelpyoudecideiftheycanbehelpfultoyou.Someexamplesofques6onsyoumayaskare:
� Howmanypa6entswithEDShaveyoutreated?� WillIseeyoueachappointmentorco-workers?� Areyouoryournursereachableforques6ons?� Whatisyourhealthphilosophy?Alterna6vemedicine?Westernmedicine?Other?
InterviewAppointment-Ques,ons
Figureoutwhatroleyouwantthisdoctortofill.Askthedoctordirectlyiftheyarewillingtofillthatrole.Forexample,say,“Areyouwillingtoworkwithmychronichealthcondi6on,Ehlers-DanlosSyndrome,tohelpmeaccomplishmygoalsofsleepingbeFerandhavinglesspain?”Ifthedoctorisunwillingtofilltheroleyouwouldlike,askwhatroletheyarewillingtofill.Thendecideifyouareokwiththatalternaterole.
InterviewAppointment–Doctor’sRole
Clearlystatewhatroleyouarewillingtofillasthepa6ent.Forexample,areyouwillingto:
� Tryproposedtreatmentop6onsadercarefulconsidera6on?� Beanac6vepar6cipantinyourhealthcare?� Understandthisdoctorwilltrytheirbestbutwillnotbeabletofixeverything?
InterviewAppointment–Pa,ent’sRole
� WasthisdoctorfamiliarwithEDSorwillingtolearn?
� Wasthisdoctoropentoques6ons?
� Doyoufeelyouandthisdoctorcanworktogether?
� DoyouwanttoaddthisdoctortoyourMedicalTeam?
AKertheInterview-Decide
Doyouwantyourdoctortohelpyouwith:
� Overcomingachallengeyouhaveathomeorwork?� Managingsymptomswellenoughtoreturntowork?� Beingabletotakefewermedica6ons?� Havingfewerdisloca6ons?� Beingabletoeatwithlesspain?Discusswithyourdoctorwhatlong-termgoalyouwanttoaccomplish.Yourlong-termgoalsmaychangeover6mebutarewhatyouandyourdoctorareworkingtowards.
OnceYouDecideThisDoctorIsOnYourMedicalTeam,DiscussLong-TermGoals
Bydoingworkbeforeyourappointments,youcangreatlyincreasethechancesofgeengthemedicalcareyou
need
ToHaveHelpfulAppointments,Prepare!
HaveReasonableExpecta,onsUnreasonable
� Iwanttobepain-free� IwantallofmydoctorstobeEDSexperts
� Iwantacure� Iwantimmediateaccesstomydoctor
� IwantmydoctortobelikeDr.Houseandrun100’softestsun6ltheanswerisfound
Reasonable
� Iwantmypainlowenoughformetofunc6on
� IwantmydoctorwillingtolearnaboutEDSandbecurious
� IunderstandthereisnotacureforEDSyet
� Iarrangewithmydoctorshowbesttocommunicateandwhentobeseen
� Iunderstandthelimita6onsofmodernmedicine
Yourappointmentgoalwilldictatewhatisdiscussedattheappointmentandwillbewhatyouandyourdoctor
aretryingtoaccomplish
Yourgoalishowyouwilldirectyourmedicalcare
Yourgoalisdecidedbyyou
CreateanAppointmentGoal
Whatdoyouwanttoleavetheappointmentwithorknowing?
Yourappointmentgoaldictateswhatkindofdatayouneedtocollect.
Whatdoyouhopetoachieveduringthisappointment?� Interviewtoseeifthisdoctorisagoodfitonyourmedicalteam?
� Images?� Tests?� Trialnewmedica6on?
� Adviceonbraces?� Mobilityaids?� Referraltospecificspecialist?
� Treatmentplan?� Paperworkfilledout?
Bykeepingasymptomdiary,chart,graphs,Excelsheet,orusingasymptomtrackingapp,youcan:
� Helpyouandyourdoctorseetrendsortriggers� Jus6fyneedfortes6ng� Supportaneedfortreatmentop6ons� Providedocumenta6onfordisabilitybenefitsCollec,ngdatatakes,meandisimportanttodoconsistently,butthebenefitscanbeenormousinge=ngthemedicalcareor
benefitsyouneed
Collec,ngData
Becausetrackingsymptomsgetsresults.APewResearchCenterstudyfoundthatofthosewhotracksymptoms:� 46%saythatthisac6vityhaschangedtheirapproachtomaintainingtheirhealth
� 40%sayitledthemtoaskadoctornewques6onsortogetasecondopinion
� 34%oftrackerssayit’saffectedadecisionabouttreatmentSoifyou’renottrackingyoursymptoms,you’remissinganeasyopportunitytoimproveyourhealthcare.
hFp://www.pewinternet.org/2013/01/28/tracking-for-health/
WhyTrackSymptomsandPrepareforAppointments?
Youandyourdoctorneedtoknow:
� Whatsymptomsyouhave� Whattriggersyoursymptoms� Whatyouhavetriedtotreatyoursymptoms� Howthattreatmentisworking
� Youcanusepapertokeepadiary,makecharts,orrecordyourdataonExcelsheets
� Youcanuseappstotracksymptomsandtreatment
CollectData
Record:� Whatyoursymptomisandwhatyourpain
levelis� Whenithappensandwhatyouweredoingbeforehand
� Howlongitlasts� Whatyouhavetriedtotreatit
� Howeffec6vethattreatmentop6onhasbeen
CollectData-Charts
Graphscanprovideyourdoctorimportantinforma6onquickly.
CollectData-Graphs
CollectData-Apps
iOS Android
� Symple� CatchMyPain� Nanulume� MyPainDiary� MyRA� ChronicPainTracker� FibroMapp� WebMDMobilePainCoach� TrackMyStack
� CatchMyPain� MyPainDiary� MyRA� ManageMyPain� ChronicPainTracker� FibroMapp� WebMDMobilePainCoach� TrackMyStack
AnAppointmentAgendahelpsyoucommunicatewithyourdoctorquicklyaboutyourappointmentgoalandsuppor6ngdata.CreateanewAppointmentAgendaforeachappointment.List:� Goal� Medica6onsandrelevanthistory� Timelineofsymptoms� Whatyoutriedandhowthatworked� Samples,pictures,orshortvideoofsymptoms
AppointmentAgenda
Date:4-12-17 DoctorSeen:Dr.James Weight:BP:Goal:Determinecauseandreviewtreatmentop6onsforincreasingdizziness.Pre-exis9ngCondi9ons:Ehlers-DanlosSyndrome,Hypermobilitytype,POTS,Osteoarthri6s
CurrentMedica9ons:TramadolER300mg/day,Vit.D32000IU/dayHealthissuesnewsincelastvisit:Becomingdizzyasmanyas76mesperday,especiallywhenstandingformorethan10minutes.ReportedsymptomstopainmanagementspecialistDr.Smithon2-16-17whosaidtoconsultyou.
Treatmenttriedandresults:Consuming80ozoffluidsperday,sal6ngmyfood,andcompressionhosewithnoimprovementindizziness.
Notes:
Ques9ons:1.ShouldIbuyabloodpressuremonitor?2.Canyourecommendone?3.WhenshouldIseekemergencymedicalcarewiththissymptom?
SampleAppointmentAgenda
Date:4-12-17 DoctorSeen:Dr.James Weight:121lbs BP:94/76Goal:Determinecauseandreviewtreatmentop6onsforincreasingdizziness.Pre-exis9ngCondi9ons:Ehlers-DanlosSyndrome,Hypermobilitytype,POTS,Osteoarthri6s
CurrentMedica9ons:TramadolER300mg/day,Vit.D32000IU/dayHealthissuesnewsincelastvisit:Becomingdizzyasmanyas76mesperday,especiallywhenstandingformorethan10minutes.ReportedsymptomstopainmanagementspecialistDr.Smithon2-16-17whosaidtoconsultyou.
Treatmenttriedandresults:Consuming80ozoffluidsperday,sal6ngmyfood,andcompressionhosewithnoimprovementindizziness.
Notes:Dr.saidtoincreasesodiumto4000mg/dayandtobuyThermatabs.Agreedtochartwhendizzy,whatIhadbeendoing,howmuchfluids/saltIconsume,andhowthatisworking.
Ques9ons:1.ShouldIbuyabloodpressuremonitor?2.Canyourecommendone?3.WhenshouldIseekemergencymedicalcarewiththissymptom?4.WherecanIbuyThermatabs?5.DoesthesodiumincludewhatIeat?
SampleAppointmentAgenda
Youneedtokeepandhaveeasyaccesstoyour:
� Collecteddata� Appointmentagendas� Medicalrecords� EDSar6clesandbrochurestoshare� Medicaljournalar6cles
Byhavingthesewellorganized,youcansharethemwhenneededatanyappointment
StayOrganized
� MyMedical–Appforkeepingpersonalhealthrecords
� GoogleCalendar–Usetorecordwhendoctorappointmentsare,sharingthatinforma6onwithothers,alarmstoremindyouwhentodoortakethings
� LoansomeDoc–NIHdepartmentallowsyoutoorderthefullar6cletoabstractsyouhaveseeninPubMed
� DragonSpeak–Voicetotextsodware
ToolstoStayOrganized
AccordionFileforRecordsandNotes
Canpurchaseatmanystoresforlessthan$10.00.Organizemedicalrecords,PTexercises,appointmentnotes,prac66onercontactinforma6on,medica6onhistory,surgeryhistory,brochuresandar6clesaboutEDS,andfutureappointments.
� Provideacopyofyouragendatoyourdoctorandkeepacopyforyourself� Sharepicturesofthesymptomorsamplesofbodyfluidsthatmayhelpsolvewhatisgoingon� Sharedatayoucollectedforsymptoms,whatyouaretryingfortreatment,andhowitisworking� Sharegraphsorothercollec6onsofyourdatafromapps
AttheAppointment–BringYourDataandAgenda
� Bringafamilymemberorfriendasanadvocateandextrapairofeyesandearsifpossible� Takenotesduringtheappointmentorasktorecordtheappointment.Itistoohardtoremembereverything� AskwriFenques6ons~butlimittoafewformoreeffec6veappointments
AttheAppointment–PlanHowtoGetNeededInforma,on
➢ Natureofsymptoms➢ Frequency
➢ Func6onalimpact
Example:Insteadof“Ihaveheadaches”,say“Inthelastmonth,Ihavehadsevenheadachesallonthebaseofmyskullwithstabbingpainabovemyeyeswhichdisruptedmysleepandabilitytodrive”.
BeSpecific
� EducateyourdoctoraboutEDS� Sayyouhave“Ehlers-DanlosSyndrome”andyourtype–donotjustsay“EDS”un6lyou’resureyourdoctorknowswhatitis
� RefertoEhlers-DanlosSocietyMedicalResourceGuidesandpeer-reviewedjournalar6cles:hFp://ehlers-danlos.com/medical-professionals/
� BringEDSar6cles,buttrytobringwhatisrelevanttothegoalofyourappointmentorsymptomsyouarehaving
� UnderstandyourdoctorcannotreadlengthyEDSar6clesduringtheappointment.Agooddoctorwillreadtheliteratureatanother6me.
AttheAppointment–ShareEDSInforma,on
� ShareBrochureshFps://ehlers-danlos.com/brochures/� ShareMedicalJournalar6cleshFp://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc� Increaseyourdoctors’awarenessofEDSasaHeritableConnec,veTissueDisorderthatcanaffectanybodysystem
TeachYourDoctorsAboutEDS
� Yourdoctorsareexpertsofthehumanbodyandyouaretheexpertofyou
� Youarenotlookingforvalida6on,butarelookingforproblemsolving
� Yourfocusneedstobeoninforma6onsharing,iden6fyingpriori6es,anddecidinguponsolu6ons
� Youneedtobeagood6memanagertomeetyourappointmentgoal
AttheAppointment,Remember…
� Beopentotryingdifferenttreatmentop6ons
� Ifyousaynotoeverythingproposed,thenthedoctor’stoolboxoftreatmentop6onsisempty
AttheAppointment–ThisIsKey!
� Whenscheduling,requestthe30-minuteorlongerappointmentslot� Theearlierinthedaytheappointmentisscheduled,thelessbehindschedulethedoctorwillbe(thustheless6meyouspendwai6ngtoseethedoctor)
� Knowwheretheofficeisandplantoarriveearlytofilloutpaperwork
� Keepprescrip6onsthroughonepharmacy
Pa,entTips–Do…
� Behonestabouteverything…itistheonlywaythedoctorwillhavetheinforma6ontheyneedtodevelopaplanthatmayhelp.Shadingthetruthorleavingoutimportantdetailshelpsnoone!
� Contactyourinsurancecompanypriortotreatmentstobesuretheyarecovered—samewithspecialistsandclinicstoseeiftheyarein-networkorhowtogetthemlabeledassuch.Thiswillsaveyoulotsofstress.
Pa,entTips–MoreDo’s…
� Understandthelimitsofthemedicalworld:tests,images,prescrip6ons,andsurgeries
� Makeaddendumstomedicalrecordstocorrectmistakes
� KnowyourHIPPArightsasapa6ent
� Thankyourdoctors,nurses,andstaffwhentheyprovidegoodserviceandcare
Pa,entTips–AndMoreDo’s…
� Don’tbad-mouthotherdoctorstoyourdoctor.Theoneexcep6onisifyouarerepor6ngaboutadoctorthisonereferspa6entsto…butreportinaclinicalwayandnota“vic6mized”way� Don’tlieabouthowyouaretakingmedica6onsorusingtreatmentop6ons� Don’ttakeitpersonallyifyourdoctorisdiscussingweightorlifestylechoices.Thedoctorissharinginforma6ononknownriskstohealth
Pa,entTips–Don’t…
� Don’tassumeaprescrip6onorsurgeryisthesolu6onforallproblems.Some6mesPT,OT,oralterna6veop6onswillprovidebeFeroutcomes
� Don’tassumethatyourdoctorcansolveallproblemsinoneappointment.Iden6fythemostpressingproblemearlyintheappointment
� Don’texpectdoctorstoreadEDSar6clesduringtheappointment~Onlybringar6clesfromscien6fic,peer-reviewedjournalsorna6onalpa6entorganiza6onsandnotfromWikipedia,Blogs,orSocialMediaposts
Pa,entTips–AFewMoreDon’ts…
� Communica6onissues� Condescendingaetude� Unabletoanswerques6ons� Unwillingnesstodiscussconcerns� Unwillingnesstoexploretreatmentop6ons� Disrespecwul� Notrespecwulof6me
NotallDoctor-Pa6entrela6onshipsareproduc6ve~Considerpar6ngwaysifyoursisnotworking*Note:Thesebehaviorscanbeexhibitedbybothdoctorsandpa,ents
AttheAppointment–BewareofRedFlags
TheroleoftheERistostabilizepa,ents:� Sothepa6entcanbereferredbacktotheirlocaldoctors
or
� Sothepa6entcanbeadmiFedintothehospital
TheEmergencyRoom–ShouldYouGo?
Youhavethesesymptomsorothertrueemergencies:
� Chestpainwithvomi6ngorshortnessofbreath,
� Suddenandsharpabdominal,chestorpelvicpain
� Unexplainedorunceasingbleeding� Difficul6eswithbreathingorcircula6on� Difficul6esspeakingorpar6alparalysis� Lossofvision� Sharpflankpain� Brokenbones
TheEmergencyRoom–GoWhen…
� Yoursymptomscanwaitforyoutoseeyourdoctor� YouknowtheproblembutwanttheERtogiveyoupainmedica6on
� Yourdoctor(s)hasnotfiguredoutwhattheproblemisyetsoyouarehopingDr.HouseisintheER.ThereisnoDr.HouseintheER
� YouarewellenoughtoaskonFacebookorothersocialmedia,“ShouldIgototheER?”
TheEmergencyRoom–Don’tGoWhen…
Bring:� Yourlistofdoctors,medica6ons,surgeries
� Anadvocate~familymemberorfriend
� Abagwithabookorthingstodotopass6me
� Comfortableclothing� Afavoritepillow� Insuranceinforma6on� Emergencycontacts� Yourphoneandcharger� Acopyofyourdirec6ves
HospitalStays
HIPAAcontrolswhocanseeyourmedicalrecordsandhowthoserecordsmustbestored.Itcoverspaper,electronic,andoralrecords.Italsocoversmanymorerightsyouhave.Itisimportantyouunderstandthisact,howitaffectsyou,andyourrightsunderit.hFps://www.hhs.gov/hipaa/
HealthInforma,onPortabilityandAccountabilityAct(HIPAA)
� Annualphysicals� Dental� Eyeappointments� Vaccina6ons� Bonedensity� Gynecological/mammograms/colorectal� Cholesterolandbloodpressurescreenings� Inves6gatewithyourdoctoranynewsymptoms� DonotassumeeverynewsymptomisduetoEDS
RememberToDoYourRegularHealthCheck-Ups
ThankYou!
HavingEDSisnoteasy.Bybeingeducatedaboutyourcondi6ons,buildingamedical
teamyoutrustandworkwellwith,preparingforyourappointments,and
beinganac6vepar6cipantinyourhealthcare,youcangetthemedicalcareyou
needtolivethebestyoucan!
