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!

ShaniWeber

Shani.Weber@Ehlers-Danlos.com

ContactInforma,on