Youth Eating Disorders - Parliament of Western Australia · 1 1.0 Executive Summary This project...
Transcript of Youth Eating Disorders - Parliament of Western Australia · 1 1.0 Executive Summary This project...
LAQON1323
Youth Eating Disorders
Inpatient Service
A Staged Approach to Developing an Integrated Service
Contents
1.0 EXECUTIVE SUMMARY ........................................................................................... 1
2.0 KEY RECOMMENDATIONS ..................................................................................... 3
3.0 BACKGROUND ............................................................................................................. 5
3.1 Aim ......................................................................................................................................................................... 5
3.2 Strategic Context .................................................................................................................................................. 5
3.3 Overview of Eating Disorders ............................................................................................................................. 6 3.3.1 Body Dissatisfaction .......................................................................................................................................... 6 3.3.2 Anorexia Nervosa .............................................................................................................................................. 6 3.3.3 Bulimia Nervosa ................................................................................................................................................ 7 3.3.4 Atypical Presentations of Eating Disorders ....................................................................................................... 7
4.0 HEALTH SERVICE PROFILE & ACTIVITY .............................................................. 8
4.1 Current Service Profile ........................................................................................................................................ 8 4.1.1 Burden of Disease .............................................................................................................................................. 8 4.1.2 Inpatient services available to youth with eating disorders.............................................................................. 10 4.1.3 Current Public Health Service Utilisation ........................................................................................................ 11
4.2 Future Health Service Profile ............................................................................................................................ 15
4.3 Identified Need .................................................................................................................................................... 16 4.3.1 Consultation ..................................................................................................................................................... 16 4.3.2 Gaps Analysis .................................................................................................................................................. 21 4.3.3 Summary of Identified Need: .......................................................................................................................... 22
4.4 Risk Assessment .................................................................................................................................................. 23 4.4.1 ANZAED Position Statement .......................................................................................................................... 23 4.4.2 Risk Matrix ...................................................................................................................................................... 24
5.0 STAGED APPROACH TO DEVELOPMENT OF SERVICE ........................................ 26
5.1 Working Party Group Members ............................................................................................................................... 26
5.2 Stages of Development ................................................................................................................................................ 27 5.2.1 Current Resources ............................................................................................................................................ 28 5.2.2 Hub and Spoke Model ..................................................................................................................................... 29
6.0 EVALUATION .............................................................................................................. 31
7.0 NEXT STEPS ............................................................................................................... 32
8.0 REFERENCES ............................................................................................................. 33
9.0 APPENDICES .............................................................................................................. 35
9.1 Appendix 1 – Community Health Data ............................................................................................................ 35
9.2 Appendix 2 – Submissions ................................................................................................................................. 37
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1.0 Executive Summary Thisprojectaimstodevelopaspecialistyouthinpatientserviceforpatientswitheatingdisordersintheagerangeof16‐25inlinewith‘ABetterDealforYouthMentalHealth:PreventionMeetsRecovery’(WAHealthDepartment,2011)Recommendation19;“DevelopaspecificinpatientunitfortreatmentofsevereEatingDisordersfor16‐25yearoldsduetothehighlyspecialisedmedicalandpsychologicaltreatmentsrequired.”AttherequestoftheChiefExecutiveoftheChildandAdolescentHealthServiceandtheExecutiveDirectoroftheSirCharlesGairdnerGroup,NorthMetropolitanAreaHealthService,thisdocumentoutlinesastagedapproachtoaninpatienteatingdisordersserviceforyouth.ThisrequestistimelygiventhecurrentNationalandStatestrategicinterestinyouthmentalhealthandtherelocationofPMHtotheNewChildren’sHospitalattheQEIIsite.
Patientswitheatingdisordersareanextremelyhighriskgroup
o Eatingdisordershavethehighestmortalityrateofanymentalillness.InWesternAustraliasince2006,approximately28individualswhohavebeentreatedforeatingdisordershavedied,somewithouthavinganyaccesstolifesavingmedicalinpatienttreatment.
o AnorexiaNervosaandBulimiaNervosafallwithinthetop10contributorstoburdenof
diseaseinAustraliabetweentheagesof16‐24.o Eatingdisordersarethe12thleadingcauseofhospitalisationwithinAustraliaandthe
costofeachadmissionissecondonlytothecostofcardiacbypasssurgeryintheprivatehospitalsector.
Youthwitheatingdisorders
o Approximately55%ofindividualstreatedforeatingdisordersinWApublichospitals
areaged16‐25.ThemajorityofthesepatientsarecurrentlytreatedinAdultMentalHealthUnits.Theseservicesareill‐equippedtoperseverewithtreatmentresistanteatingdisordersandtheirmedicalcomplications.
o Thewindowofopportunityforasuccessfuloutcomeoftreatmentofanindividualwith
aneatingdisorderbeginstofadeafter3‐4years(NEDC2010),makingitveryimportanttoinvestineffectiveservicesfortheyearsfollowingtheonsetofthedisorder–i.e.adolescenceandyouth.
o Australianandinternationalbestpracticeguidelinesrecommendthatinpatient
treatmentofyouthwitheatingdisordersisinageappropriatefacilitiesthatareequippedtomeetthecomplexmedical,psychologicalanddevelopmentalneedsofthesepatients.
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TheWAPublicHealthsystemisnotmeetingtheinpatientneedsofyouthwitheatingdisorders
o Consultationwithconsumersandrelevantstakeholdersrevealscommonexperiencesof
inappropriateandinadequateinpatientcareforpatientswitheatingdisordersinthepublichealthsystem.
o Regionalyouthandfamiliesarewithoutadequateassistanceasservicesstruggleto
provideappropriatein‐patienttreatment.
o WesternAustralianfamiliesaretravellinginterstateandinternationallytoreceiveadequateinpatientcarefortheiryoungpeoplewitheatingdisorders.
o Youthandadultswitheatingdisordersareabletoreceivespecialistpsychological
outpatientcareatthestatewidespecialistyouthandadultCentreforClinicalInterventions(CCI)service.However,nospecialistinpatientcareisavailableforpatientsoncetheyarenolongereligibleforcareatPMH.
PublicSpecialistEatingDisordersServicesinWA
Age SpecialistInpatient SpecialistOutpatient0‐17* 18‐25* >25
*NB:Ifpatientswitheatingdisordersarediagnosedabovetheageof16andrequireinpatienttreatment,theyareseenbytheadulthealthsystemandnospecialistinpatienteatingdisordersserviceisavailable.
o WesternAustraliaistheonlyAustralianstatetonotformallyaddresstheinpatient
treatmentofeatingdisordersinAdultHealthServices.Otherstateshaveeitherdedicatedeatingdisordersservicesorstate‐widetreatmentprotocolsforpatientswhopresentwithaneatingdisorder.
Thedevelopmentofaspecialistinpatientserviceforpatientswitheatingdisordersis
recommended
o Youthwithmentalhealthdisordersoftenrequireperiodsofacuteintervention,followedbyperiodsoflowlevelcontinuingcare.Aspecialistyouthinpatienteatingdisordersserviceisanessentialpartofthecontinuumofcaretoensurepatientsreceivethebestavailabletreatmentduringtheseperiodsofacuteneed.
o Theroleofthisserviceisthreefold:
Facilitateexcellentinpatientcaretoyouthwitheatingdisorders Promotelinkageswithinandbetweenservices Developtreatmentprotocolstoensuretreatmentofpatientswitheating
disordersisevidencebasedandconsistent.
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2.0 Key Recommendations
Recommendation1:Theserviceisestimatedtorequire4bedsutilisedbyyouthwitheatingdisordersatanyonetime.
o CurrentlytheWAActivityBasedFundingSchedulesuggestsanaverageLOSforan
inpatientstayforaneatingdisordersis21days(ABFInpatientWeightedActivitySchedule2011‐2012)
o CurrentinpatientactivityinWAsuggeststhatayouthinpatientservicewouldseeapproximately70patientsayearresultingin160separations.
o Theseestimatessuggest4bedswillbeutilisedbyyouthwitheatingdisordersatanyonetime.
Recommendation2:Theservicerequiresstaffwhoarecompetentinthetreatmentofyouthandareabletoprovidedevelopmentallyappropriatetreatmentandactivities.
o Consumersreportfrequentexperiencesofdevelopmentallyinappropriatetreatmentin
adultinpatientsettings.E.g.enforcednaptimesduringdaysandlackofaccesstoeducationsupport.
Recommendation3:ImprovedprotocolsforthetransitionfromChildandAdolescentServicestoAdultServicesarerecommendedtobedeveloped.
o Consumersreportthetransitionbetweenchildandadolescentservicesandadult
servicesisdifficulttonavigate,resultinginaperiodofserviceavoidanceandincreasedrisk.
Recommendation4:Families/Carersarerecommendedtoplayanimportantroleintheplanningandimplementationoftreatmentofyouthwitheatingdisorders.
o Familiesandcarersareoftentheprimaryinfluenceinayoungperson’slifeandarethe
mostimportantresource.Theyreportfeelingexcludedfromthetreatmentprocessbytheadultinpatientsystem.
Recommendation5:Akeypriorityfortheservicewillbetoensurecontinuityofcarethroughthecontinueddevelopmentofeffectivelinkagesbetweenservicestofacilitatetransition,mutualsupportbetweenservices,andconsistenttreatmentprotocols.
o Aninpatientserviceisonlyonepartofacontinuumofcare.Inpatient,outpatient,and
communityservicesinboththeprivateandpublicsectorsneedstrongrelationshipsandconsistentprotocolstoprovideexcellenceincontinuityofcareforpatientsandtosupportstaffindemandingenvironments.
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Recommendation6:Trainingwillbeanintegralactivityofthenewservice.Thenewinpatientserviceisrecommendedtocollaboratewithexistingcommunityandinpatienteatingdisorderstrainingprogramstodelivercomprehensivetrainingoptionstoinpatient,outpatientandcommunityservices
o Thetreatmentofeatingdisordersspansseveralspecialistareas.Utilisationofcurrently
availabletrainingreflectsaneedforincreasededucationandsupportforservicesprovidingtreatmenttopatientswitheatingdisorders.
Recommendation7:Ahubandspokemodelspecialistinpatienteatingdisordersserviceisrecommendedforyouthwitheatingdisorders.
o TheNationalEatingDisorderCollaborationNationalFrameworkrecommendsthedevelopmentofHubandSpokemodelsofcareforeatingdisordersservices:
“MajorpopulationcentresneedspecialistEatingDisorderunitsprovidingexcellenceincareandresourcedtoprovidesupportforthedevelopmentofperipheriesofcompetence.”(pg42,NEDC2010)*see5.2.2fordescriptionofhubandspokemodel
Recommendation8:Theserviceisrecommendedtobedevelopedinseveralstagestoallowtheutilisationofcurrentlyavailableresources,followedbyanexpansionoftheservicetomeettheinpatientneedsofyouthwitheatingdisorders.
o Thisservicewillinitiallyfocusonassessmentandmedicalstabilisationfollowedbytransitiontoappropriatepsychiatricorcommunitycaresettings.
o TheproposedstagestowardsthedevelopmentofaHubandSpokeinpatientservicefor
youtheatingdisorderspatientsare:
o Stage1:ProvidemedicalandpsychiatricfundingtosupportconsultationliaisonandtrainingalreadyconductedbycliniciansatSCGH.DeveloptreatmentprotocolsandtrainingresourcesfortreatmentofeatingdisorderswithintheSCGH.
o Stage2:Developmultidisciplinaryteamcapableofprovidingspecialistassessments,
liaisonservicesandCommunityServicessupport.
o Stage3:Expandteamtoincreasetreatmentoptionsforinpatientsandprovidetrainingandresearchcomponents.
Recommendation9:StageonefundingtobepromptlymadeavailabletosupportcurrentworkbyPsychiatricandMedicalconsultantsatSCGHwithpatientswitheatingdisorders.
o Significanttimeisbeinginvestedinthetreatmentofeatingdisordersbyconsultantsat
SCGH.ProtocolsandproceduresarecurrentlybeingdevelopedfortreatmentofpatientswitheatingdisordersatSCGH.ThismomentumcanbemaintainedthroughmedicalfundingforthetreatmentofeatingdisordersatSCGH.
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3.0 Background
3.1 Aim Aimoftheproject:Theaimofthisprojectistoestablishaninpatientserviceinastagedmannerwhichiscapableofmeetingthecomplexmedical,psychologicalanddevelopmentalneedsofpatientswitheatingdisordersaged16‐25inasustainablemanner.Expectedoutcomesandobjectives:Theprojectwillcompriseoffourstages:
Stage1:ProvidemedicalandpsychiatricfundingtosupportconsultationliaisonandtrainingalreadyconductedbycliniciansatSCGH.Developtreatmentprotocolsandtrainingresourcesfortreatmentofeatingdisorders.
Stage2:Developmultidisciplinaryteamcapableofprovidingassessments,liaison
servicesandCommunityServicessupport.
Stage3:Expandteamtoincreasetreatmentoptionsforinpatientsandprovidetrainingandresearchcomponents.
3.2 Strategic Context Thedevelopmentoftheservicewillbealignedwithkeystrategicplanningdocumentsataservice,state,andnationallevel.Keydocumentsthatthisservicewillalignwithare:
NationalStandardsforMentalHealthServices2010 TheWesternAustralianMentalHealthCommission‐MentalHealth2020:Makingit
Everybody’sBusiness HealthDepartmentofWesternAustralia–ABetterDealforYouthMentalHealth:
PreventionMeetsRecovery EatingDisorders–TheWayForward:AnAustralianNationalFramework.TheNational
EatingDisordersCollaboration AustraliaNewZealandAcademyforEatingDisordersPositionStatement:Inpatient
ServicesforEatingDisorders. NationalInstituteforClinicalExcellence(NICE):EatingDisorders–Coreinterventions
inthetreatmentandmanagementofanorexianervosa,bulimianervosaandrelatedeatingdisorders.
Thesedocumentsallspecificallyrecommendyouthspecificservices.Thosethatrelateexplicitlytoeatingdisordersallrecommendthatinpatienttreatmentofpatientswitheatingdisordersisinageappropriatefacilitiesthatareequippedtomeetthecomplexneedsofthesepatients.
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3.3 Overview of Eating Disorders
3.3.1 Body Dissatisfaction BodydissatisfactionhasbecomeaculturalnorminWesternsociety(TheNationalEatingDisordersCollaboration,2010a).MissionAustraliasurveyed48,000youthin2009andfoundthatbodyimageisoneofthebiggestconcernsforAustralianadolescents(MissionAustralia,2007,2009).Bodydissatisfactiondevelopswhenanindividualexperiencesnegativefeelingsabouttheirbodywhichimpactontheirwellbeing(CommonwealthofAustralia,2009).Bodyimagedissatisfactionistypicallymoreprevalentamongfemaleshoweverresearchsuggeststhatbodydissatisfactionamongstboysandmenisincreasing(TheNationalEatingDisordersCollaboration,2010a).ASouthAustralianstudyfoundthattheprevalenceofdisorderedeatingbehavioursdoubledbetween1995‐2005amongmalesandfemalesaged15yearsorolder(Hay,Mond,&Darby,2008).Recentevidencesuggeststhattheprevalenceofeatingdisordersisrisinginyouthandtheageofonsetisfalling(Brunner&Resch,2006).
3.3.2 Anorexia Nervosa AnorexiaNervosaischaracterisedbyasevererestrictionoffoodintake,bodyweight15%lowerthanisconsiderednormal,lossofmenstrualperiods,anintensefearofgainingweightand/orlosingcontrolofeating,relentlesspursuitofthinnessanddisturbedperceptionofpersonalbodyweightandshape(TheVictorianCentreofExcellenceinEatingDisorders,2005).EvidencesuggeststhatAnorexiaNervosahasabimodalpeakonsetat12‐14yearsand17‐18years(TheNationalEatingDisordersCollaboration,2010a),meaningoneofthepeakonsetperiodsfallswithintheagerangecoveredbythecurrentproposal.Theaveragedurationoftheillnessis5‐7years(Marks&Maguire,2005).AnorexiaNervosaisthethirdmostcommonchronicillnessthataffectsadolescentfemales,followingobesityandasthma,andisfivetimesmorecommonthaninsulindependantdiabetesmellitus(Marks&Maguire,2005).ThelifetimeprevalenceofAnorexiaNervosainwomenisestimatedbetween0.3%and1.5%(TheNationalEatingDisordersCollaboration,2010a).Theratesofanorexiainmalesareonetenthoftheseestimates(TheNationalEatingDisordersCollaboration,2010b).AnorexiaNervosacausesnumerousmedicalcomplicationssuchaselectrolyteimbalances,musclewasting,elevatedcholesterol,andfluiddepletion(Fisher,Golden,&Katzman,1995).Long‐termconsequencesofAnorexiaNervosaincludekidneyfailure,heartfailure,osteoporosis,infertilityandcardiacarrest(Fisheretal.,1995).Complicationsremainfollowingrecoverywithratesofdepression,anxiety,andsuicidesignificantlyhigherinindividualswhohaverecoveredfromAnorexiaNervosacomparedtothegeneralpopulation(TheNationalEatingDisordersCollaboration,2010a).Studieshaveshownthattheall‐causestandardisedmortalityratioisthreetimeshigherforAnorexiaNervosathananyotherpsychiatricillnessandis12timeshighercomparedtowomenwithoutmentalillness(TheNationalEatingDisordersCollaboration,2010b).
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3.3.3 Bulimia Nervosa Bulimianervosaischaracterisedbyrecurrentepisodesofeatinganabnormallylargeamountoffoodinashortperiodoftime,accompaniedbyasenseoflossofcontrol(Gaskill&Sanders,2000).Theseperiodsofbingeeatingarefollowedbyinappropriatecompensatorybehaviourstopreventweightgain,suchaspurging(Gaskill&Sanders,2000).TheaverageageofonsetforBulimiaNervosais16‐18years(TheNationalEatingDisordersCollaboration,2010a)–withintheagerangecoveredbythecurrentbusinesscase.BulimiaNervosaismoreprevalentthanAnorexiaNervosa.Studiessuggestthat0.9%‐2.1%offemalesand0.1%‐1.1%ofmalesexperienceBulimiaNervosaintheirlifetime(TheNationalEatingDisordersCollaboration,2010b).PhysicalandmedicalsideeffectsofBulimiaNervosaincludedentalerosion,gumdisease,gastrointestinalbleeding,inflammationoftheliningofthegastrointestinaltract,electrolyteimbalancesandcardiacarrest(TheNationalEatingDisordersCollaboration,2010a).
3.3.4 Atypical Presentations of Eating Disorders Disorderedeatingbehavioursthataresevere,butdonotfitthediagnosticcriteriaforAnorexiaNervosaorBulimiaNervosaareclassifiedasEatingDisordersNotOtherwiseSpecified(EDNOS).ExamplesincludeBingeEatingDisorderorconditionsinwhichthepatienthasdevelopedchronicmaladaptiveeatingpatternsthatplacethematsevereriskbutdonotqualifythemforadiagnosisofAnorexiaorBulimia(TheVictorianCentreofExcellenceinEatingDisorders,2005).ItisimportanttorecognisethateatingdisordersinthiscategoryareasmedicallyandpsychologicallysevereaseatingdisordersthatfitthediagnosticcriteriaforAnorexiaorBulimiaNervosa(TheNationalEatingDisordersCollaboration,2010a).AtypicaleatingdisordersarethemostcommonoftheEatingDisorderDiagnoses.TheprevalenceofBingeEatingDisorderinAustraliaisaround2.3%andtheprevalenceofotheratypicaleatingdisordersisaround1.9%(Hayetal.,2008).Atypicalpresentationsarethemostcommondiagnosesinclinicalsettings(Fairburn&Harrison,2003).
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4.0 Health Service Profile & Activity
4.1 Current Service Profile
4.1.1 Burden of Disease ThefinancialandsocialburdencausedbyeatingdisordersinAustraliaisdifficulttomeasureduetothelackofstudiesconductedinanAustraliancontext(TheNationalEatingDisordersCollaboration,2010b).Asaresult,theimpactofpoorbodyimageandeatingdisordersislikelytobeunderestimated(TheNationalEatingDisordersCollaboration,2010a).Studiesindicatethateatingdisordersarethe12thleadingcauseofhospitalisationwithinAustraliaandthecostofeachadmissionissecondonlytothecostofcardiacbypasssurgeryintheprivatehospitalsector(TheNationalEatingDisordersCollaboration,2010a).ThestandardisedmortalityrateforAnorexiaNervosais12timeshigherthantheannualdeathrateforallcausesinfemalesaged15‐24years,andsuicideratesforpeoplelivingwitheatingdisordersissignificantlyhigherthansuicideratesinthegeneralcommunity(TheNationalEatingDisordersCollaboration,2010b).Otherunquantifiedsocialcostsassociatedwitheatingdisordersincludethedevastatingeffecttheillnesshasonthesocial,mentalandphysicaldevelopmentofthesufferer,andthedetrimentalfinancialandemotionaleffectonfamilyandfriends(TheNationalEatingDisordersCollaboration,2010b).WesternAustralianDeathsThenumberofrecordeddeathsofindividualsinWesternAustraliawhohadbeentreatedforaneatingdisorderinaninpatientsettingfrom2006‐2011waslessthan5.Thenumberofrecordeddeathsofindividualswhohadbeentreatedforaneatingdisorderineitheranoutpatientorinpatientsettingfrom2006‐2011was28.Thissuggeststhatthereareindividualswitheatingdisorderswhoareknowntothepublichealthsystemwhodiewithoutaninpatientstayinapublichospital,reflectinganinadequacyinthesystemofcareforindividualswitheatingdisorders.
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DisabilityAdjustedLifeYears:Eatingdisordersfallwithinthetoptenleadingcausesofburdenofdiseasein15‐24yearoldAustralianfemales(AustralianInstituteofHealthandWelfare,2007),andcontributesignificantlytotheDisabilityAdjustedLifeYearslostfrommentalhealthconditionsintheage15‐24(Figure1).Figure1.DiseaseBurden(DALYs)forspecificMentalHealthconditions,asapercentageoftotalMentalHealthburden,bygender,15‐24years,WA,2006.
Source:EpidemiologyBranch.BurdenofdiseaseinWesternAustralia.WABurdenofDiseaseStudy.DepartmentofHealth,Perth,WesternAustralia,2010.
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4.1.2 Inpatient services available to youth with eating disorders 1. PrincessMargaretHospitalPrincessMargaretHospitalprovidesin‐patientcareforpatientsunder16,andupto18yearsoldforexistingpatients,onmedicalwardswithin‐reachfromaspecialistmulti‐disciplinaryteam.2. AdultInpatientUnitsAllMentalHealthUnitsprovidegeneralpsychiatriccarewithmedicalsupportforyoungpeoplesufferingeatingdisordershowevertheseservicesareill‐equippedtoperseverewithtreatmentresistantanorexianervosaanditsmedicalcomplications.Manypatientsaredischargedhomewithoutfollow‐upcare.Patientswithabodymassindex(BMI)oflessthan16areabletobeseenonmedicalwards,wherepsychiatriccarereliesoninputfromoverstretchedconsultationliaisonteams.3. HollywoodPrivateHospitalHollywoodPrivateHospitalprovidesspecialistmultidisciplinaryinpatientcareforpatientswithEatingDisordersaged16andabove.4. OtherPrivateHospitalsTheMarionCentreandPerthClinicprovidesomeinpatienttreatmentforyouthwhoaremotivatedfortreatmentwitheatingdisordersandotherpsychiatriccomorbidities
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4.1.3 Current Public Health Service Utilisation Numberofpatients:AustralianprevalenceratesreportedbyHayet.al.(2008)wouldsuggestthatinWesternAustralia’s2010populationof335000individualsaged16‐25years(males:175000;females160000,ABS2010),approximately6000femalesand2500maleswillmeetcriteriaforaneatingdisorder.Ofthesepatients,approximately10%areexpectedtorequirehospitalisationinanyoneyear.ThebreakdownoftheestimatednumbersofindividualswitheatingdisordersinWAispresentedinTable1:Table1Estimatesofthenumberofindividualsin2010inWAaged16‐25yearswitheatingdisorders†basedonpointprevalenceestimates. PointPrevalence Female/Male
RatioNumberFemales NumberMales
AnorexiaNervosa
0.3% 10:1 430 50
BulimiaNervosa
0.9% 10:1 1300 150
BingeEatingDisorder
2.3% 1:1 1850 2000
EatingDisorderNOS
1.9% 10:1 2750 350
Total 6330 2550
ThemajorityofpatientswhoreceiveinpatienttreatmentinWApublichospitalswithaprimarydiagnosisofaneatingdisorderareaged16‐25(Table2).Itisacknowledgedthatthesearepotentiallyunderestimatesasreportsfromclinicianssuggestthatpatientswitheatingdisordersonmedicalwardsmaybecodedasamedicaldiagnosiswithoutasecondarydiagnosisofaneatingdisorder.Table2Thenumberofpersonstreated,andnumberofhospitalseparationsofindividualswitheatingdisorders†frominpatienthealthservicesbyageonadmissionfrom2006to2011. Total2006‐2011 Average/Year 2006‐2011 PercentageofTotal 2006‐
2011Ageonadmission
NoPersons Separations NoPersons Separations NoPersons Separations
0‐15yrs
168 409 28 68 22% 23%
16‐25yrs
429 1006 72 168 55% 56%
>25yrs
183 370 31 62 23% 21%
†Eatingdisordersreferstoaprimarydiagnosisofaneatingdisorderoraprimarydiagnosisofmalnutritionwithasecondarydiagnosisofaneatingdisorder
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PsychiatricvsNon‐psychiatriccare:TheproportionofpatientswithineachagerangewhoaretreatedforaneatingdisorderinPsychiatricunitsandnon‐psychiatricunitsareshowninTable3.Patientsbelow15yearsofageareseenbythePMHeatingdisordersunit,wherethemodelofcareisinlinewithbestpractise;emphasisingmedicalstabilisationasthepriorityforinpatientcare,withpsychiatricinpatientcareforcomorbidconditionsasrequired.Thisisincontrastwith16‐25yearolds,themajorityofwhomareseenintheadultsysteminpsychiatricwards.Table3Theaveragenumberofpersonstreatedandseparationsfrompsychiatricandnon‐psychiatricinpatientunitsbyagerangeandthepercentageofwardtypewitheatingdisorders†from2006‐2011. Average/Year 2006‐2011 PercentageofPsych/NonPsych
AdmissionbyAge2006‐2011Ageonadmission NoPersons Separations NoPersons Separations0‐15yrs
PsychWard
8 27 29% 40%
Non‐Psych
20 41 71% 60%
16‐25yrs
PsychWard
57 134 79% 80%
Non‐Psych
15 33 21% 20%
>25yrs
PsychWard
23 51 74% 84%
Non‐Psych
8 10 26% 16%
RuralvsMetro:Themajorityofpatientstreatedininpatientsettingsforeatingdisordersareseeninmetropolitanhospitals(Table4).In2010,74%oftheWestAustralianpopulationwerelivinginmetropolitanareas(AustralianBureauofStatistics,2010).ThisindicatespatientswitheatingdisorderswereeithertravellingtoPerthtoreceiveadequatecareoraregrosslyunderdiagnosedinruralareas.Table4Numberofinpatientseparationsperyearinruralandmetropolitanhospitalsofpatientswitheatingdisorders†.
Inpatientservicelocation
Yearofseparation2006 2007 2008 2009 2010 2011
Metro 265 307 209 328 279 209Rural 14 10 13 12 9 16†Eatingdisordersreferstoaprimarydiagnosisofaneatingdisorderoraprimarydiagnosisofmalnutritionwithasecondarydiagnosisofaneatingdisorder
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LengthofStay:Thedistributionsforthelengthofstayofinpatients’withaneatingdisorderinmedicalandpsychiatricsettingsarerepresentedinTable5and6respectively.Ofparticularconcernarethelengthsofstaysforyouthandadultsinmedicalsettings.Lowmedianssuggestalargenumberofpeoplearebeingadmittedwithaneatingdisorderormalnutritionandaredischargedveryquickly.Thesepatientswillnotbereceivingadequatecare.Alsoofnotearethelargemaximumlengthsofstaysforpatientswitheatingdisorders,representingthecomplexityoftreatingthesepatients.Table5Distributionoflengthofstaybyagegroupforpersonswitheatingdisorders†inMedicalInpatientUnitsin2006‐2011.
AgeGroup(years)
0‐15years 16‐25years >25years
Yrof
Separation
Median Mean Max Median Mean Max Median Mean Max
2006 29 31.5 67 7 13.1 56 3 3 5
2007 30 33.6 59 2 20.2 73 3 4.5 12
2008 29 31.1 66 14 21.4 68 4 5.6 12
2009 19 22.6 71 8 17.0 54 1 7.9 46
2010 28 25.4 44 28 20.8 52 4 5.1 18
2011 26 23.3 51 4 11.2 38 4 6.2 21
Total 24 25.1 71 11 17.3 73 3 21.3 46
*Lengthofstayisindaysfromadmissiontodischarge,excludingdaysonleave.†Eatingdisordersreferstoaprimarydiagnosisofaneatingdisorderoraprimarydiagnosisofmalnutritionwithasecondarydiagnosisofaneatingdisorder
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TheaveragelengthofstayisrelativelystableacrossagegroupsforPsychiatricInpatientUnits.Table6Distributionoflengthofstaybyagegroupforpersonswitheatingdisorders†inPsychiatricInpatientUnitsin2006‐2011.
AgeGroup(years)
0‐15years 16‐25years >25years
Yrof
Separation
Median Mean Max Median Mean Max Median Mean Max
2006 4 15.8 63 14 23.4 74 12 18.7 101
2007 22 21.8 54 13 19.0 72 34 39.3 120
2008 26 32.1 72 21 24.8 69 24 36.8 180
2009 7 11.2 36 21 26.5 100 11 25.1 117
2010 9 10.1 27 23 27.4 105 16 20.4 68
2011 18 22 56 21 30.2 189 17 26.7 131
Total 14 19 72 19 25 189 19 27 180
*Lengthofstayisindaysfromadmissiontodischarge,excludingdaysonleave.
TheaveragelengthofstayforaneatingdisordersadmissionattheWeightDisordersInpatientUnit(SA)is20.7days.ThemajorityofpatientwithEatingDisordersatPMHareadmittedformalnutrition.TheaveragelengthofstayformalnourishmentatPMHis29days.WAActivityBasedFunding(ABF)suggeststheaveragelengthofstay(ANOS*)foranadmissionforaneatingdisorderormalnutritionshouldbe21days.*ANOS=AverageNightsofStay:Calculatedas1/3thehighboundarypointofacentralepisodeforaneatingdisorderinpatientstayInpatientWeightedActivityUnitSchedule(U66Z)(ABFInpatientWeightedActivitySchedule2011‐2012).ThisissubjecttochangeinthefutureastheActivityBasedFundingSchemeisimplementedandrefined.
†Eatingdisordersreferstoaprimarydiagnosisofaneatingdisorderoraprimarydiagnosisofmalnutritionwithasecondarydiagnosisofaneatingdisorder
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4.2 Future Health Service Profile Recommendation1:Theserviceshouldexpectofhaveapproximately4bedsutilisedbyyouthwitheatingdisordersatanyonetime.BasedontheWAHealthActivityBasedFundingInpatientWeightedActivityUnitSchedule,theaveragenightsofstayforapatientwithaneatingdisordershouldbe21days.Utilisingthenumberofpatientscurrentlypresentingtopublicinpatientunits(Table2),theestimatednumberofinpatientbedsrequiredforpatientsaged16‐25witheatingdisordersisfour(SeeTable7)Table7Modellednumberofbedsrequiredtomeetinpatientdemandofpatientsaged16‐25witheatingdisorders.
AveragePatients/Year
ANOS TotalBedDays/Year NumberofBeds
67 21 1407 4TotalPatient/Year=AveragenumberofcurrentinpatientadmissionsinWA2006‐2011ANOS=AverageNightsofStay:Calculatedas1/3thehighboundarypointofacentralepisodeforaneatingdisorderinpatientstayInpatientWeightedActivityUnitSchedule(U66Z)(ABFInpatientWeightedActivitySchedule2011‐2012).ThisissubjecttochangeinthefutureastheActivityBasedFundingSchemeisimplementedandrefined.
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4.3 Identified Need Therearenopublicdedicatedbedsforyoungpeoplewhofirstpresentovertheageof16withaneatingdisorder.Thereisnopublicspecialistinpatientserviceordayprogramsforyoungpeopleovertheageof18witheatingdisordersinWA.Theadequacyofthissystemisassessedinthefollowingsections.ThereisnowconsensusthatthetreatmentoutcomesforAnorexiaNervosaisbetteramongstadolescentsandyouththanadults(TheNationalEatingDisordersCollaboration,2010a).Thismakesitveryimportantforinvestmentinservices,trainingandresourcesforearlydiagnosisandinterventionforthosewithEatingDisorders,asthewindowofopportunityforsuccessfuloutcomestartstofadeafter3‐4yearsofillness.Thisisonedisorderwhenearlyinterventionisabsolutelycrucialandthereforeaccesstoevidencebasedbestpracticeisessential.
4.3.1 Consultation Extensiveconsultationhasattemptedtorepresentallrelevantstakeholdersintheformulationofthecurrentproposal.Theidentifiedstakeholderswhohavebeenincludedinthisconsultationare: Consumers Carers PrincessMargaretHospitalEating
DisordersTeam AdultInpatientServices:
o SirCharlesGairdnerHospitalo SwanDistrictHospitalo FremantleHospitalo GraylandsHospital
HollywoodHospital TheCentreforClinicalInterventions BentleyAdolescentUnit RuralEatingDisordersandMentalHealth
Services DepartmentofEducation/HospitalSchool
Services BridgesAssociationIncorporated Women’sHealthWorks OtherAustralianStates’publichealth
systems
Dependingontheirareaofinterestandexpertise,stakeholderswereinterviewedregarding: Theirperceptionoftheneedforaspecialistyoutheatingdisordersservice Whattheirneedswouldbefromaspecialistyoutheatingdisordersservice Thestructureandorganisationthatthespecialistyoutheatingdisordersservice
shouldtaketobeeffective
17
ConsumerConsultationRecommendation2:Theservicerequiresstaffwhoarecompetentinthetreatmentofyouthandareabletoprovidedevelopmentallyappropriatetreatmentandactivities.
Recommendation3:ImprovedprotocolsforthetransitionfromChildandAdolescentServicestoAdultServicesshouldbedeveloped.ThethematicanalysisofconsumerconsultationsisrepresentedinFigure2.ConsumersfromthePMHConsumerAdvisorGroupwereconsultedastheyareyouthwhohavesufferedacuteeatingdisordersandexperiencedtransitiontoadultservices.Additionalconsumerinputwasachievedthroughwrittensubmissions(seeAppendix1).Keythemesincludedexperiencesofdevelopmentallyinappropriatecare,findingthetransitionfromChildandAdolescentservicestoAdultservicesdifficult,andthenegativeimpactofbeingtreatedwithadultpatients.Figure2.Thematicanalysisofconsumerconsultationsregardingayoutheatingdisordersinpatientservice.
Inpatient Experiences of
Youth
Transition from CAHS to AHS
Activities
Adult Ward Experience
StaffOther inpatients Routines
Service Avoidance
Change in level of care Education Therapy
Don’t care as much
Not age appropriate
Stigma
Have lost hope
Talk too loud and ask about dentures
Not positive and enthusiastic
“This bed could be used by someone who really needs it”
See the disorder not the individual
ScaryDepressing
“That’s what I will end up like”
Old person routines – nap times during day with dimmed lights and quiet time
InflexibleSocial Isolation
Fear of hospitalisation
Uncertain which service to approach
Used to PMH level of care
Inpatient to outpatient big change
Important
Combats boredom
Facilitates return to normal life
When ready to change
Can be useful in future
18
CarerConsultation
Recommendation4:Carersshouldbefacilitatedtoplayanimportantroleintheplanningandimplementationoftreatmentofyouthwitheatingdisorders.ThethematicanalysisofcarerconsultationsisrepresentedinFigure3.CarerconsultationswereachievedthroughthePMHparentsmeetingandfathersmeetingaswellasacallforwrittensubmissionsdistributedthroughemailnetworksofPMH,Bridges,andWomen’sHealthWorks.Themoststrikingaspectofthecarer’sconsultationweretheexperiencesoffamiliestravellingbothinterstateandoverseastoreceiveadequatetreatmentfortheirchildren.Figure3Thematicanalysisofcarerconsultationsregardingayoutheatingdisordersinpatientservice.
19
ServiceProviderConsultationRecommendation5:Akeypriorityfortheserviceshouldbeensuringcontinuityofcarethroughthecontinueddevelopmentofeffectivelinkagesbetweenservicestofacilitateeffectivetransition,mutualsupportbetweenservices,andconsistenttreatmentprotocols.Publichealthserviceprovidersreportthetreatmentofpatientswitheatingdisorderscanbestressfulandintimidatingandthattheyrequiremoreresourcesandtrainingtoprovideadequatecare.CaseExamplesofInadequateCare:
GPreportsfeelingyouthpatientneededinpatientcarebutunabletorefertoappropriateservice.Resultedinmalnourishedpatientbeinginappropriatelytreatedincommunity.
HollywoodEatingDisordersTreatmentProgramreportspatientswhoaretreatment
resistantandbehaviourallydisturbedbeingmanagedundertheMentalHealthActandreferredtoGraylandsdespiteneedingspecialistmedicalcare.
CentreforClinicalInterventionsEatingDisordersProgramreportshavingtodischarge
patientswhoaremalnourished(BMI<14)toGPdespitethepatientsneedingspecialistcare.
AdultPsychiatricUnitsreportdischargingpatientswithout‘adequatecommunity
support’andexpectingthepatientstoreturnforanotherinpatientstaywithinseveralweeks.
Adultinpatientwardsreportrelyingonthegoodwillofnursingstaffandmedicalteams
toattendcaseconferencesandpatientmeetingstoallowbestpracticetreatment.
Adultpsychiatricandmedicalstaffreportthatthetreatmentofeatingdisordersrequiresspecialistskillsandknowledgeacrossmedicalandpsychiatricfields,astrongcontinuitytocare,andtimetodevelopatherapeuticrelationship.Lackingtheresourcestoprovidethesefactorsleadstounwillingnesstotreatpatientswitheatingdisorders.
Allserviceproviderscontactedtodateagreeayouthinpatienteatingdisordersservice
wouldbebeneficial.Theworkinggroupinformingthisreportidentifiedthataninpatientserviceisonepartofthecontinuumofcareprovidedbythepublichealthsystem.Itisimportantforconsumerstoexperienceconsistenttreatmentmessagesandtohaveaclearunderstandingofwhatservicesareabletoprovide.Transitionbetweenservices(e.g.frominpatienttooutpatient)wasidentifiedasasignificantperiodofrisk.Thedevelopmentofprotocolsandrelationshipsbetweenserviceswasidentifiedasakeypriorityindeliveringexcellenceincontinuityofcare.
20
Training:Recommendation6:Trainingshouldbeanintegralactivityofthenewservice.Thepublicspecialisteatingdisordersservicesshouldcollaboratetodelivercomprehensivetrainingoptionstoinpatient,outpatientandcommunityservices.TheCentreforClinicalInterventions(CCI)andthePMHEatingDisordersTrainingandEvaluationCentre(EDTEC)offertrainingcoursesandworkshopstoserviceproviders.In2011,tertiarymentalhealthcentresrequestedandweresuppliedwith10trainingandconsultationsessionsinresponsetotheneedsoftheirstaff,inadditiontotheregulartrainingschedulesofCCIandPMHEDTEC.Theserequestsbyadultandyouthservicesreflecttheneedformoreresources,trainingandsupportforserviceprovidersofpatientswitheatingdisorders.Itisnoteworthythatthemajorityoftrainingforeatingdisordersissuppliedtomentalhealthservices.Medicalinpatientserviceprovidersandgeneralpractitionersexpressaneedfortrainingincoreeatingdisorderstreatmentconcepts,suchasrefeedingsyndromeandtreatmentresistance.
21
4.3.2 Gaps Analysis OthersAustralianStateswerecontactedinordertoconstructagapsanalysisofthecurrentWApubliceatingdisordersservice(Table8)OfparticularrelevancetothecurrentproposalisthegapsinserviceinWesternAustraliaforyouthaged16‐25,forwhomtherearenopublicspecialisedinpatienteatingdisordersservicesavailable.Table8ComparisonoftheAustralianStates’publiceatingdisordersinpatientservices. TypeofPublic
ServiceWA SA VIC NSW QLD
Children8‐16
SpecialistInpatientED’sService
ConsultationLiaisonServices
NumberofAvailableBeds
(8) (3) (14) 13 (6)
DayProgramorResidentialProgram
Youth16‐25
SpecialistInpatientED’sService
* *
ConsultationLiaisonServices
* *
NumberofAvailableBeds
0 * * 8 0
DayProgramorResidentialProgram
Adult18+
SpecialistInpatientED’sService
ConsultationLiaisonServices
NumberofAvailableBeds
0 6 15 5 5
DayProgramorResidentialProgram
Parenthesesindicatebedsthatareavailabletopatientswitheatingdisordersbutnotdedicatedtoeatingdisorders.*Indicatesservicedeliverycoversfullyouthagerangebutnotwithadedicatedyouthservice.E.g.adultservicemaytakereferralsfrom16.NB: NSWYouthserviceistheWestmeadAdolescentUnitacceptingpatientsaged14‐18.
Victorianservicesvaryslightlybyhealthareaservice,butallareashavesomelevelofchild,adolescentandadultcover.
22
4.3.3 Summary of Identified Need: Thereisasignificantgapintheadequacyofcareprovidedtoyouthwitheatingdisorderswhorequireinpatientcare.YouthconstitutethemajorityofindividualsbeingadmittedtoWApublichospitalsfortreatmentofeatingdisordersandcontributesignificantlytothetotalburdenofdiseaseofindividualsaged16‐24.Thedatapresentedabovesuggestindividualsaged16‐25whoarepresentingforinpatientadmissionsarebeingdischargedveryquickly,beingtreatedinpsychiatricunitswhichareill‐equippedtodealwithmedicalcomplications,andthatruralpatientswitheatingdisordersarenotbeingtreatedinruralhospitals.28patientswhohadbeentreatedforaneatingdisordersbytheWApublichealthservicediedbetween2006‐2011.Modellingofthenumberofpatientswitheatingdisordersaged16‐25whorequirehospitalisationeachyearsuggestsanaverageof4bedswillbeutilisedatanyonetimebypatientswitheatingdisorders. Consultationwithconsumers,carersandserviceproviderssuggestexperiencesofinadequateinpatientcareforpatientswitheatingdisordersiscommonandconsistent.WesternAustraliaprovidesaspecialisteatingdisordersinpatientserviceforchildren.However,forpatientsdiagnosedwithaneatingdisorderabovetheageof16orthoseleavingthePMHserviceat18,thereisnopublicspecialistinpatientserviceavailable.SouthAustralia,NewSouthWales,andVictoriaprovidespecialisteatingdisordersinpatientservicesto16‐25yearolds.Thisproposalhasalsoidentifiedagapintheprovisionofservicetopatientswitheatingdisorderswhoareaged25yearsandolder.Thisisanissuewhichmayimpactonayoutheatingdisordersserviceastheneedfromoldergroupsislikelytoutiliseresourcesfromayouthservice.Clearunderstandingwillneedtobeestablishedoftherelationshipofayouthinpatientservicewiththecareofadultsovertheageof25.
23
4.4 Risk Assessment
4.4.1 ANZAED Position Statement TheAustraliaNewZealandAcademyforEatingDisorders(ANZAED)PositionStatement:“InpatientServicesforEatingDisordersrecognisesthatpatients(andtheirfamilies)maysufferpsychologicaltraumawhentreatedininappropriatesettings.Therearewell‐recognisedproblemsandriskswith;
Managingpatientsinhighsecuritypsychiatricunitswherethemedicaldifficultiesofeatingdisorderpatientscanbeoverlookedandwheretheirneedsmaybeplacedatalowerprioritythanpatientswhohavegreaterbehaviouraldisturbance
Mixingadolescentswithadultssufferingacutepsychoses,thelatterwhomayhave
severebehaviouraldisturbance Managementbyprofessionalsunfamiliarwithcurrentmanagementand/orthe
potentialforadverseeffectsofexcessivelypunitiveandcoerciveapproaches”Therisksassociatedcontinuingthecurrentservicestatusquoorwithdevelopingayouthspecificeatingdisordersinpatientservicearepresentedinthefollowingtwosections.
24
4.4.2 Risk Matrix AriskassessmentoftwooptionsispresentedinTable9and10–tocontinuethecurrentservicestatusquoortodevelopayouthspecificeatingdisordersinpatientservice.Theidentifiedrisksassociatedwithdoingnothingaresignificantlyhigherthanthoseassociatedwithdevelopingtheservice.Option1.DoNothingTable9.Risksassociatedwithcontinuingcurrentservice.Risk Controls Likelihood Consequence RatingContinuationofinadequatetreatmentformalnutritionandmedicalcomplicationsleadingtodeath.
Inadequate Possible Catastrophic(HP)
High
Patientwithinadequatementalhealthtreatmentsuicides.
Inadequate Possible Catastrophic(HP)
High
Patienttreatedininappropriatesettingleadingtopoortreatmentprognosis.
Inadequate VeryLikely Major(HP)
Extreme
IndividualwithEDavoidsserviceduetonegativeexperiencesleadingtopooroutcomes.
Inadequate Possible Major(HP)
High
PatientwithED18‐25yrscausesstressinhealthsystemduetolackoftreatmentexpertise.
Inadequate Likely Moderate(HS)
High
Burdenofdiseasetransferredtofamilyduetoinadequatepubliccare.
Inadequate Likely Major(HP)
High
25
Option2.DevelopYouthSpecificEatingDisordersInpatientServiceTable10.Risksassociatedwithdevelopingayouthspecificeatingdisordersinpatientservice.Risk Controls Likelihood Consequence RatingInsufficientresourcesinvestedresultinginunsustainableservice.
Unknown Possible Major(OO)
High
InadequateexpertisereEDtreatmentavailableresultinginunsustainableservice
Unknown Possible Catastrophic(OO)
High
Inadequateintegrationacrossinpatientservices(i.e.medical,psychiatric,child,youth,adult)leadingtocontinuationofinadequatecare.
Unknown Possible Major(HP)
High
Serviceneedfrompatientsover25resultinginserviceoperatingoutsideofscopeandbecomingoverburdened.
Unknown Possible Moderate Medium
Increasedserviceutilisationleadingtooverburdeningofcommunityresources.
Unknown Possible Moderate Medium
Communityservicesnotengagedadequatelyleadingtolackofreferrals.
Unknown Possible Moderate(FL)
Medium
Inadequatedemandfrompopulationtofullyutiliseservice.
Unknown Rare Moderate(FL)
Low
26
5.0 Staged Approach to Development of Service
5.1 Working Party Group Members 1. SylviaMeier
ExecutiveDirectorChildandAdolescentMentalHealthService
7. DrEileenTayDirectorEatingDisordersProgramHollywoodHospital
2. DrCarolineGoossensClinicalDirectorChildandAdolescentMentalHealthService
8. JuliePottsEatingDisordersProgramManagerPrincessMargaretHospital
3. AnthonyCollierActingYouthMentalHealthClinicalLeadChildandAdolescentMentalHealthService
9. NathanGibsonDirectorAdultMentalHealthNorthMetroHealthService
4. PaulaNathan Director CentreforClinicalInterventions
10. DrAntheaFurslandPrincipalClinicalPsychologistEatingDisordersProgramCentreforClinicalInterventions
5. DrLisaMillerConsultantPsychiatristConsultationLiaisonTeamSirCharlesGairdnerHospital
11. DrGregOngConsultantPhysicianSirCharlesGairdnerHospital
6. ProfDavidForbesProfessor,SchoolofPaediatrics&ChildHealthUniversityofWesternAustraliaPaediatricanGastroenterologyDepartment&EatingDisordersProgramPrincessMargaretHospitalforChildren
12. ChrisHarris TransitionCoordinator EatingDisorderProgram PrincessMargaretHospital
27
5.2 Stages of Development Recommendation7:Ahubandspokemodelspecialistinpatienteatingdisordersserviceshouldbedevelopedforyouthwitheatingdisorders.Astagedapproachtothedevelopmentofayoutheatingdisordersinpatientserviceisoutlinedbelow.Thegoalofthecurrentproposalisahubandspokeinpatientservice,amodelofcarebasedontheNationalEatingDisordersCollaborationNationalFramework(NEDC2010).TheNEDCrecognisethathubandspokemodelsofcarepromote:“Integrated,coordinatedoptionsfortreatmentacrossAustralia.MajorpopulationcentresneedspecialistEatingDisorderunitsprovidingexcellenceincareandresourcedtoprovidesupportforthedevelopmentofperipheriesofcompetenceinruralandremotesettings.CitycentresinareahealthregionshavethecapacitytolinkwithcliniciansinthepublicandprivatesectorsandwithuniversitybasedprofessionalunitstoprovideseamlesscareacrosstheagespectrumanddurationofillnessforAustralianswithEatingDisorders.Theyareabletoinnovateandevaluateclinicaloutcomesaswellasprovidesatellitesupporttourbanandremoteareas.”(NEDC2010,pg42)Recommendation8:Theserviceshouldbedevelopedinseveralstagestoallowtheutilisationofcurrentlyavailableresources,followedbyanexpansionoftheservicetomeetneed.Thisapproachproposesfourphasestothedevelopmentoftheservice:
1. Utilisecurrentavailableresourcestodevelopstandardisedprotocols,resourcesandtrainingmaterialsforthetreatmentofeatingdisordersatSCGH.
2. Establishbasicmultidisciplinaryassessment,consultationandliaisonteam.3. Expandteamtoincreasetreatmentoptionsforpatients.4. Expandteamtoincreaseresearchandtrainingcomponents.
Theproposeddevelopmentoutlinedbelowisintendedasaguidetofutureserviceandmodelofcaredevelopment.
28
5.2.1 Current Resources Recommendation9:CurrentworkbyPsychiatricandMedicalconsultantsatSCGHwithpatientswitheatingdisordersshouldbeimmediatelysupportedbyStage1funding.Throughtheworkinggroupformedforthisproject,resourcescurrentlyavailablewithintheChildandAdolescentHealthServiceandtheAdultHealthServicehavebeenidentifiedthatarecapableofprovidingsomeimprovementintheadequacyofinpatientcarereceivedbyinpatients’witheatingdisordersintheadulthealthsystem.ThePrincessMargaretHospitalEatingDisordersEvaluationandTrainingCentre(EDTEC)isabletoprovide:
TrainingandconsultationtosupportthedevelopmentoftreatmentprotocolsandtrainingmaterialsatSCGH.
AservicelevelagreementwithSCGHtocontinuetoprovideongoingsupportexpertise,supervisionandtoassistinthecollaborativeprocessoftransitionbetweentheservices.
SirCharlesGairdnerHospitalConsultationLiaisonteamisabletoprovide:
Semi‐regularmeetingsofrelevantstaffandattendanceatcaseconferencestofacilitatetheimprovementofcareforpatientswitheatingdisorders.
AninitialGrandRoundatSirCharlesGairdnerHospital. CollaborationwithPMHto:
o AdaptPMHEatingDisordersguidelinesandprotocols.o Developanonlinetrainingmodule.o DevelopaneatingdisordersresourcesfileformedicalstaffatSirCharles
GairdnerHospital.TheCentreforClinicalInterventionsisabletoprovide:
IncreasededucationtomedicalstaffatSCGHinregardstheservicesthatCCIoffersandtheproceduresforaccessingthoseservices.
Continuousliaisonandsupportfortransitioningpatientstocommunitycare
29
5.2.2 Hub and Spoke Model ThedevelopmentofaHubandSpokemodelinpatientserviceisdetailedbelowasaguidetooutcomes,costingandstaffing.ThismodelisbasedonthecurrentPMHmodelofcarewhichprovidesmultidisciplinaryinpatientcaretopatientswhorequiremedicalstabilisationduetomalnourishmentandassociatedmedicalcomplications,alongwithtrainingandconsultationsupportforcommunityhealthservices. Aim OutcomesStageOne Providemedicalandpsychiatric
fundingtosupportconsultationliaisonandtrainingalreadyconductedbycliniciansatSCGH.Developtreatmentprotocolsandtrainingresourcesfortreatmentofeatingdisorders.
Acknowledgemedicalcostofcurrenttreatmentofpatientswitheatingdisordersandprovidesomespecialisedmedicalmanagement.
EstablishrelationshipwithPMHEatingDisordersTrainingandEvaluationTeamwithaimofdevelopingresourcesandtrainingmaterialsforstaffatSCGH.
StageTwo Developmultidisciplinary team
capableofprovidingassessments,liaisonservicesandCommunityServicessupport.
Providecomprehensiveinpatientassessment
Liaisewithinpatientstaff Establishrelationshipswithcommunity
services Establishtrainingandsupportfor
communityservices
StageThree Expandteamtoprovidetreatmentoptionsforinpatients.
Structuredeatingprograms Therapy Dieticianconsults Occupationaltherapy,socialworker,and
physiotherapysupport
StageFour Expandteamtoincreasetrainingandresearchcomponents.
Includepsychologyandmedicalregistrarsonteam
Integrateresearchintoservice Establishcollaborativeresearch
approachesbetweenPMH,Youth,AdultandCommunityServices.E.g.CCI.
Medicalandpsychiatricconsultantswillprovideleadershipandmanagementtotheyouthservice.Theirroleswillinclude:o Weeklycaseconferenceswithandwithout
patiento Meetingcompetencyandupskilling
requirementso Managingindividualisedcareplans o Managingandcontainingteamo Consultationandliaisonwithcommunity
serviceproviderso Providingconsistencyincare.
30
ProposedStaffingBudgetNB:Allfiguresincludeon‐costs.Position Stage1 EFT Stage2 EFT Stage3 EFT Stage4 EFTConsultantPsychiatrist
$115,994 0.4 $115,994 0.4 $173,991 0.6 $289,995 1
MedicalConsultant
$115,994 0.4 $115,994 0.4 $173,991 0.6 $289,995 1
Dietician
$24,231 0.2 $60,578 0.5 $121,156 1 $121,156 1
SRNConsultationLiaisonNurse
$47,510 0.4 $118,776 1 $237,552 2 $237,552 2
SpecialistClinicalPsychologist
$78,555 0.5 $78,555 0.5 $157,109 1
AdminAssistant
$35,609 0.5 $35,609 0.5 $71,218 1
SocialWorker
$60,578 0.5 $121,156 1 $121,156 1
SeniorResearchScientist
$36,124 0.2 $90,309 0.5 $121,156 1
TrainingCoordinator
$65,584 0.5 $65,584 0.5
TraineeRegistrar
$121,156 1 $121,156 1
SeniorOT
$60,578 0.5 $121,156 1
RNEatingDisorders
$98,651 1 $98,651 1
ClinicalPsychologyRegistrar
$110,894 1
CSPhysiotherapist
$60,578 0.5
TotalFinancialYear $303,729 1.4 $622,208 4.4 $1,378,288 9.7 $1,987,356 14
31
6.0 EvaluationTheprogramwillbeevaluatedagainsttheNationalStandardsforMentalHealthServices(2010)usingtheKeyPerformanceIndicatorsdevelopedfromtheninedomainsfromtheKeyPerformanceIndicatorsforAustralianPublicMentalHealthServices(2005):Effectiveness:care,interventionoractionachievesdesiredoutcomeinanappropriatetimeframe.Appropriateness:care,interventionoractionprovidedisrelevanttotheclient’sneedsandbasedonestablishedstandards.Efficiency:achievingdesiredresultswiththemostcost‐effectiveuseofresources.Accessibility:abilityofpeopletoobtainhealthcareattherightplaceandrighttimeirrespectiveofincome,physicallocationandculturalbackground.Continuity:abilitytoprovideuninterrupted,coordinatedcareorserviceacrossprograms,practitioners,organisationsandlevelsovertime.Responsiveness:theserviceprovidesrespectforallpersonsandisclientorientated.Itincludesrespectfordignity,culturaldiversity,confidentiality,participationinchoices,promptness,qualityofamenities,accesstosocialsupportnetworks,andchoiceofprovider.Capability:anindividual’sorservice’scapacitytoprovideahealthservicebasedonskillsandknowledge.Safety:theavoidanceorreductiontoacceptablelimitsofactualorpotentialharmfromhealthcaremanagementortheenvironmentinwhichhealthcareisdelivered.Sustainability:systemororganisation’scapacitytoprovideinfrastructuresuchasworkforce,facilities,andequipment,andbeinnovativeandrespondtoemergingneeds.
32
7.0 Next Steps Phase3:Utilisecurrentlyavailableresourcestoinitiateservicethroughtheworking
groupestablishedforthisproject. Phase4:Expandandrolloutserviceover3‐4years. Phase5:Evaluateservice.
33
8.0 References
Australian Bureau of Statistics. (2010). Population by Age and Sex,
Regions of Australia. Canberra, Australia. Australian Institute of Health and Welfare. (2007). Young
Australians: Their health and wellbeing. Canberra: Australian Institute of Health and Welfare.
Brunner, R., & Resch, F. (2006). Eating Disorders - An increasing problem in children and adolescents? Revue Therapeutique, 63(8), 545-549.
Commonwealth of Australia. (2009). Fourth National Health Plan - An agenda for collaborative government action.
Fairburn, C., & Harrison, P. (2003). Eating Disorders. Lancet, 361, 407-416.
Fisher, M., Golden, N., & Katzman, D. (1995). Eating disorders in adolescents: A background paper. Journal of Adolescent Health, 16, 420-437.
Gaskill, D., & Sanders, F. (2000). The encultured body: Policy implications for healthy body image and disordered eating behaviours. Brisbane: Queensland University of Technology.
Hay, P., Mond, J., & Darby, A. (2008). Eating disorder behaviours are increasing: Findings from two sequential community surveys in South Australia. Public Library of Science One, 3(2), e1541.
Marks, P., & Maguire, S. (2005). Full submission to the select committee on mental health - Eating Disorders core business for mental health. Sydney: Centre for Eating Disorders.
Mission Australia. (2007). National Survey of Young Australians: Key and emerging issues.
Mission Australia. (2009). Insights into the concerns of young Australians: Making sense of the numbers.
The National Eating Disorders Collaboration. (2010a). Eating disorders prevention, treatment & management: An evidence review.
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The National Eating Disorders Collaboration. (2010b). Eating disorders: The way forward - An Australian National Framework.
The Victorian Centre of Excellence in Eating Disorders. (2005). Eating disorders resource for health professionals: A manual to promote early identification, assessment and treatment of eating disorders. Melbourne: The Victorian Centre of Excellence in Eating Disorders.
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9.0 Appendices
9.1 Appendix 1 – Community Health Data Thepatternofthemajorityofpatientsbeingbetweentheageof16‐25holdsforWAcommunitymentalhealthservices(Table11):
Table11Thenumberofpersonstreatedandoccasionsofservice(OCS)deliveredwithaprimarydiagnosisofaneatingdisorderfromCommunityMentalHealthServicesbyagefrom2006to2011.
Total2006‐2011 Average2006‐2011 Percentage2006‐2011Ageonadmission
NoPersons OCS NoPersons OCS NoPersons OCS
0‐15yrs
252 17727 42 2955 15% 27%
16‐25yrs
974 42502 162 7083 59% 63%
>25yrs
417 7024 70 1171 26% 10%
36
Table12.ComparisonoftheAustralianStates’publicoutpatientandcommunityeatingdisordersservices.
TypeofPublicService
WA SA VIC NSW QLD
Children8‐16
OutpatientServices
DayProgram
CommunityMentalHealthServices
TrainingandSupport
Youth16‐25
OutpatientServices
* *
DayProgram
CommunityMentalHealthServices
* * * * *
TrainingandSupport
* * * *
Adult18+
OutpatientServices
DayProgram
CommunityMentalHealthServices
TrainingandSupport
*
*Indicatesservicedeliverycoversfullyouthagerangebutnotwithadedicatedyouthservice.E.g.adultservicemaytakereferralsfrom16.
37
9.2 Appendix 2 – Submissions ConsumerSubmission1:Havingbeenofficiallydiagnosedwithanorexianervosaattheageof15and7monthsIwasfortunate,inlightofthisproposal,tofallintotheagegapthatexistsinthementalhealthsystem.Havingturned16weeksafterbeingdischargedtherewerenorealoutpatientservicesIcouldutilisebesidesthoseatPMH,whichIcouldnotfaceusingsincegoingbacktheremademefeelinadequateduetotheweightIhadgainedsincemy‘release’.DuetothelackofsupportinthesystemIspentagoodtwoyearsabusingalcoholandotherdrugstotryanddealwiththemanypsychologicalproblemsIstillhad.AftermanyfailedsuicideattemptsandyearsofstrugglingIknowmyjourneyto‘recovery’isn’toveralthoughIfeelIamwellonmywayandIhopethatinsomewaymyexperiencecanhelpothers.
WhileIrealisethehealthsystemisalreadythinlystretchedandhaschangedoverthelastsevenyearsIfeelmorepublicawarenessregardingeatingdisordersandtheservicesavailablewillenablebothsufferersandfamiliestomakebetterinformedchoicesregardingtreatment.Consideringtheincrediblestressachildwithaneatingdisorderplacesonafamilymakingtheseresourcesmoreeasilyavailableisparamount.Duetomymumandherfriends’lackofunderstandingregardingeatingdisordersmyconditionwasallowedtoprogresstoanincrediblyseriousstagebeforemymumsteppedinanddecidedsomethingneededtobedone.AsamemberoftheF.A.C.E.S.groupoperatingatPMHIampersonallymorethanhappytoofferupfreetimetopartakeinpubliccampaignstospreadawarenessabouteatingdisordersandthemanytreatmentoptionscurrentlyavailable.Creatingamoreprominentpublicawarenesscampaignalsohelpsalleviatethestigmasurroundeatingdisordersandgiveshopetocurrent(andpast)sufferers.
HavingbeenthroughtheinpatientsystematPMHIcanassureyouthatthestaff
recruitedtoworkinthisnewdepartmentwillbeoneofthemostimportantaspectsintermsofitssuccess.Sinceeachjourneyto‘recovery’issodifferentit’sessentialpatientshavestaffthatcangivethemindividualthetreatmenttheyneed.Notonlyshouldstaffhavetherightmind‐settoworkwiththepatientsbuttheyalsoneedtherighttrainingandmentoring.Anotherimportantaspectishowtomaintainstaffmoralinsuchanintenseenvironment.Ensuringtheyhaveadequatefacilitiesto“de‐stress’in,counselling/supportwhenneededandaninvolvedsocialcommitteearejustafewideasthatmayhelpkeepstaffmotivated.
Educationistheonlythingthatgotmethroughmystrugglewithmyeatingdisorder.
EversinceIwas14I’vewantedtobeabiomedicalscientistanditwastherealisationthatthisdreamcouldn’toccurwhileIgaveintomydemonsthateventuallyforcedmetotakeownershipofmylifeandgetseriousaboutgettingwell.Ensuringpatientshavethesupportfromtheireducationalinstitution,beitschool,TAFE,universityetc.isnecessarytoensureasenseofnormalityfollowingdischarge.Againthiswillmean
38
buildingrapportbetweenthedepartmentandtheseinstitutes,somethingF.A.C.E.S.alreadydoes(withpatientsschools)andI’msurewouldbehappytohelpbuildcontinuetobuild.
LookingatthewarditselfIthinkbeingonamedicalwardismoreappropriate.The
stigmaattachedtohavinganeatingdisorderisalreadyconsiderableandisnothelpedbybeingonapsychiatricward.Ideallyitwouldbeseparatebutthatwouldobviouslybeuptothebudgetsettledon.Thecoloursshouldbebrightandupliftingwithemphasise,oratleastencouragementplacedonindividualisingapatientsownpersonalspaceforthedurationoftheirstay.(Craftisoneofthefewthingsthatgetsyouthroughanadmissionandbeingabletodisplayitaroundyouandcreateahappypositivespacethatspeakstoyouandmirrorsyourownindividualtreatmentsneedsisespeciallyhelpful).
Therapyoptionsarealsocrucialforthenewsystem.Itneedstoberealisedbyall
involvedthateachindividualisincrediblydifferentintermsofthetreatmenttheyneedandhowtheywillrespondtoaparticulartypeoftreatment.Thereshouldbynomeansbea‘onesizefitsall’approachwhendetermininghowapatientwillbetreatedandinsomecapacity(eveniftheyarerefusingtoco‐operate)apatientshouldbeinvolvedinthesedecisions.
Moresupportforparentsisalsoparamountinensuringthesuccessoftheprogram.My
mumwasalwaystoldthatmyadmissionwasonlythebeginningofmyrecoveryandthatwhenIwasdischargedtherealprocesswouldstart.Idon’tthinkatthetimeshefullyappreciatedthedepthofwhatmycaseworkerwastellinghersinceshewasjustsohappyIwouldlive.Theyearsthatfollowedwere(I’massuming)theworstofherlifeduetothetremendousstrainIputherundertryingtocopewith‘beingwell’andnotkillingmyself.Providingmoreparentsupportduringapatientsadmissionandprovidingthemwithtoolsandknowledgeofwhatlifewillbelikeafterdischargeiscrucial.Continuingthissupportafterapatienthasgonehomeisalsoimportant.Itshouldbenotedthatthesesessionsshouldoccurwiththestaffandparentsalonewithoutthepresenceofthepatient.
Ithinkitshouldbementioned(althoughitisprobablyalreadyknown)thatmost
patientsgointotheprogramwithanorexiaandcomeoutwithbulimia.(ThecultureagainmayhavechangedsinceI’vebeenthroughthesystem).Thisissueneedstobeaddressedandcopingstrategiesforpatientsandparentsshouldbegivenbefore,duringandafterdischarge.
Emphasiseneedstobeplacedoncreatingaccessibleandconvenientlytimedoutpatient
services.CurrentlytheonlyoptionsIhaveregardingtreatmentforsomeofmylingeringproblemsinvolveeitherpaying$5000(whichIdon’thave)andmissingtwoweeksworthofuniversityormissinganassessedlabfortwomonthsmeaningIwilllikelygetapoorgradeformyuniversityunit(weekdaysduringworkhoursarenotoptimaltimestohaveservicesforpeopletryingtogettheirlivesbackontracksince,surprisesurprise,theywillprobablybeatworkorschool).Servicesneedtobecreatedthatfocus
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onthingslikethereintegratingintosocietyandbuildinganetworkoffriendssinceisolationisabigfactorinthisdisease.Thisalsofeedsintotheideaoftaperingdownthesupportgiventopatients,whichhelpsthemovercometheirillnessandatthesametimefeelconfidentintheirabilitytocontinuetheirsuccessontheirown.
Thesenseofabandonmentyoufeelfromthesystemissodetrimentaltotherecoveryprocessanditiswonderfultoseethisbeingaddressed.Iurgeyoutofullyconsidertheissuesthatareraisedthroughoutthedurationofthisprojectandtolookbeyondbudgetsandseethebiggerpicture;theseyoungpeopleareourfutureandweowethemeverychanceofrecoverywecanafford.
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CarerSubmission1:Mydaughterisnow23andintherecoverystagesfromanorexia.Shewasfirstdiagnosedin2004justasshereachedthatspecialageof16.Webelieveitfirststartedforherataround13.Between2004&early2010shehashad;7admissionstoHollywoodclinic,thefirstinmid2004almostatfeedingtubestage,thelastin2010,threeseparateprogramsattheCentreforClinicalInterventions,2years(late2008toearly2010)seeingaclinicalpsychologistassheranoutofsessiontimeatCCI.Inearly2010thingsunravelledwithareturntoextremelyrestrictiveeatingandpersonallifedisruption.Itwouldappeartheunravellinghadstartedaround3/4ofthewaythrough2009.Thefirsthalfof2010wasareallydifficulttimeforourdaughter&ourfamily.Hertreatingpsychologistwasnotaddressing/treatingmydaughterasapersonwithaneatingdisorderbutapersonwithpersonalissues&relationshipdifficulties.Fortunatelyinmid2010wefoundapersonwhoisaneatingdisorderseducator.Thispersonhadherownextremeexperienceworkingtosaveherdaughterfromthegripofextremeanorexia,youmayknowthestoryofBronteCullis&herparentsGrahamCullis&JanClarke.AttheendofJuly,myWife,Daughter&ItravelledtoMelbourneforourfirstEatingDisordereducationsessionswithJanClarke.Duringour10daystayinMelbournewe(we=Daughter,Mother&Father)sawJanforsevenseparatesessionswitheachsessionlastingaround5hours.ThesewerenottreatmentsessionstheywereEducationSessions.WeasparentsweregivenaneducationaboutanEatingDisorderits;HowWhatWhyWhenWhereforparents,whileatthesametimeourdaughterrecievedthesameeducationfromaperspectiveoflivinganedexperience.Theseeducationsessionsprovedtobesobenefitialandworthwile.Forthefirsttimeinsixyearsweas""Parents""wereallowedto&required(JanagreedtomeetourdaughterontheprovisothewealsometwithJan)toparticipateas""Parents""tolearnaboutourdaughter'sexperiencewiththeeatingdisorder&mostofallwelearntthe;Parentsdo's,dont's&donothingsofaneatingdisorder&recoveryfromitandourdaughterlearntthesamefromalivingexperienceviewpoint.AfterourfirsteducationsessionswithJaninMelbournewereturnedhometoPerthwithanewperspectiveofeatingdissorders&aneducatedhopeforourdaughter'srecoveryandgoodideaofwhatourrolewastoassist&supportthatrecovery.BetweenAugust2010&March2011weflewJanfromMelbournetoseeusatourhome6times.OnthesetripstoPerthJanwouldspendtwoorthreedaysinPerthseeingusforupto5or6hourseachday.Janhasalsobeenavailableviae‐mail,phone&text.LuckilyJan'ssessionsarenotexpensiveandshetookspecialdealflights.TheeducationthatweasParents&ourDaughterhaverecievedfromJanhasenableasignificantchangetooccurforourDaughter&ourfamily.Inthe21monthssinceourvisittoMelbourneandthestartofoureatingdisordereducationourDaughterhastravelledalongwayonthepath&journeyofrecovery.Herlifeisnowsignificantlylessdrivenbyanxiety,selfdoubt&strictcontroloffood&body.OurDaughterfoundadietitionthatspecialisesineatingdisorderswhohasnowthroughcontactwithourdaughterdevelopedarapourwithJanClarke.
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FortunatelyforuswefoundJanClarkeandherwayofhelpingthoseexperiencinganeatingdisorder&theirfamiliesIonlywishthatwehadbeenabletobegiventhiseducationatthetimeourdaughterwasfirstdiagnosedthensomuchofthelivedexperinceoverthepast9yearswouldnothaveoccurredandmydaughter'srecoveryacheivedsomuchearlierinherteenageyears.Havingexperincedthetreatmentprocess&methodappliedtoourDaughteratHollywoodClinic,CentreforClinicalIntervention&hertreatingPsychologistIamfirmlyofthebelief&convictionthat""MedicalSpecialist/Professional""onlytreatmenthasoneimportantarea&stakeholderleftout.Itleavesout"EATINGDISORDEREDUCATION"andleavesoutParentandFamilyparticipation.Thisisevenmoresowhenthelivingexperincepersonturns18,heretheAustralianPrivacyrulesstepinandisolate&lockoutamostimportsupportgroup""PARENTS""asthesystemprevents&inhibitsthetreatmentprofessionalsengagingin&withthe""Parents"'.Especiallyiftheparentis/hasbeensignificantlytraumatisedbytheeatingdisorderandisinaanxiety/disstressedtypeframeofmindandstate.Inthesesituationstheanxious/distressedparentcanbepercievedbythetreatmentprofessionalsasaproblem/difficult/agressive/badparentthatmustbeblockedout/preventedfromparticipation/involvementinsteadofbeingseenasatraumatisedvictimoftheeatingdissorder.Thesetraumatisedvictims(Parents,family,Carers)"""needhelp&education""""!!!!!fromtreatmentprofessionalsnotisolation,abandonment&worstofallinsomecasespunishment.Awelldeveloped&holisticprogramthateducates&supportsparents,family&carersisonethatIbelievewillhelptremendously.UnfortunatelyIfeeltherearesituationswherethepatient/treatmentprofessionalonly/exclusivemethod/approachhasnotsuccededandinsomecasesthatIknowofpersonallyalifehasbeenlostthatcouldhavehadadifferentresult.
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CarerSubmission2:WhenmydaughterwasaninpatientforaneatingdisorderonageneraladolescentwardIfoundthattherewasalackofunderstandingofthenursingstaffofthetreatmentofeatingdisorders.Ifeltthattheeatingdisorderteamandthenursingstaffonthewardwereverydisconnectedfromeachotherbythehospitalprotocols.AlthoughsomerespectwasshowntomeasprimarycareronthewardingeneralIwas,intentionallyorunintentionally,patronisedbythestaffandfeltalackofconnectionbetweenthemandmyself.Thestaffweresometimeskindandsometimesopenlyhostileanddismissiveofbothmyselfandmydaughter.IacceptthatIwasinshockandsomeofmyperceptionscouldhavebeenalittleskewedbythat,howeverthedismissiveattitudewasreal.Ifoundthestaffonthepsychiatricwardtobemoreacceptingoftheconditionandempathetictomyselfandmydaughter.Sadlythestrictrestrictionsofthepsychiatricwardresocialisationmademefeelshewasbecomingmoreofanoutsiderbytheday.Ifoundtheeatingdisordersteamverysupportiveandhelpfulduringmydaughter’stransition.Ifeltthattherewasthepotentialformydaughtertobeabandonedandthiswasveryfrightening.ThefactthattherewaslittleouttheretoturntowasextremelyfrustratingandIfeelluckythattheeatingdisordersteamguidedmydaughtertoanexcellentgastroenterologistandpsychiatrist.Duringthattimeandnowweareblessedwithawonderfulpsychologist.Obviouslyona16‐25yearseatingdisordersunitwouldbetreatingthecauseoftheeatingdisorder.Fromacarer'sperspectiveIwouldliketoseeacarermentor/advocateasacomponentofanygrouptreatingaparticularpatient.Ifeeltheparent/carerhasaknowledgeofthepatientthatisjustasimportantastheknowledgethevariouspractitionershaveinhowtotreatandpromoterecoveryfromeatingdisorders.IrealisethateverypatientandeverycareraredifferentbutIfellsureitwouldbepossibletofindasystemthatallowstheparent/carermoreinput.IalsofeltIneededmoredirectiononhowtohelpmydaughterfromsomeoneItrusted.Stressisabigfactorforacarerandoftenthosedirectionsneedtoberepeatedorevenputinwritingforthecarertoreferbackto.AnotheraspectofaneatingdisorderisthelossofsocialskillsandIthinktherapiestoreplacethemareveryimportant.EducationcanbetrickybutIfeelitisimportanttokeepsomeonewithaneatingdisorderlearning,tokeepthatpersonwantingtolearn,thiswouldbeanexampleofagoodareafortheparentcarermentortosupporttheparent.Forthecarertounderstandfoodandtounderstandhowthemechanicsoffoodandaneatingorderpatientworkisimportant.Ourfamilyusesmealsasabasisforcelebrationandcommunication,whenmydaughterrejectedfoodwelostoneofourmostimportantwaysofrelatingtoher,wefeltasifwenolongerspokethesamelanguage.Weallneededatranslationofhowtocircumventthisandstillfeelconnected.8yearsonandwestillhavenotsolvedthisquandary.
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CommunitySubmission1:Bridges
Manythanksfortheopportunitytocommentregardingyourdevelopmentofayouthinpatientservice.WeatBridgesareverypleasedtohearofthisproposalasweareextremelyconcernedforyoungpeopleandadultsovertheageof16,withrespecttoaccesstoinpatientcare.Weareawareofnumeroussituationswherepeopleareturnedawayfrompublicmedicalandpsychiatrichospitals,andforsomepeopleinprivatesectorweareawareoftheirfrustrationaboutthelackofchoice/optionsforinpatientcare.Wearealsoawareforthosepeoplewhoareadmitted,theyoftenfindthemselvesfrightenedandvulnerableininpatientsettings,whichcatertoawidearrayofpsychiatricpatients,oftenexperiencingpsychosisandbehaviouraldisorders,frequentlymen.Theseenvironmentsdon’tmeettheneedsofoftenyoung,thin,medicallycompromisedindividuals,typicallyfemale.Manypeoplealsoreportexperiencingtheseadmissionsaspunitiveduetoanxietyandalackofspecialistskillinthestaff.Wewouldalsoliketoseetheneedsofboysandmenattendedto,aswellastheneedsoffathers.Wewouldlikeyoutoconsidergenderinthedesignoftheinpatientunittomakeitaccessibletomalesufferers,andconsiderwhenprovidingfamilysupport,thespecificneedsoffathers.
Bridgeswouldsupportthedevelopmentofadedicatedpublicinpatientunitforyoungpeople,separatefromchildrenandadolescents,andseparatefromadultswithchroniceatingdisorders.Wewouldsuggestthisunitcatertoaperson’smedicalandpsychiatricneeds,aswellasemotional,socialandeducationalneeds.Theattitudeandskillofstaffiscrucial,withthecapacitytoprovidekindandfirmboundaries,andtoreallyattendtothepersonasanindividual.Adoptionofideasfromyouthfriendlyclinicalpracticearerecommended,withattentiontonon‐clinicaltypeenvironmentsandstaffattitudes.Thefamily’sneedsarealsoimportantandmayincludeneedsforsupport,information,skillsorfamilytherapy.Wewouldrecommendthattheunitprovidesarangeoftherapiesandhavecloselinkstooutpatientservices.Topreventpatientsbeinglosttotreatmentafterdischargeanassertivecasemanagementmodelisrecommended.Aunitthatcaterstostep‐downapproaches,withviewtodevelopmentofdayhospitalwouldbemostsuccessful,withacommunityoutreacharmtofacilitatedischargeandengagementwithoutpatientcare.Inpatientunitscanhavedifficultpeerdynamicsandwewouldrecommendthatinadditiontostaffsupport,apeersupportmodelisincluded,thatistheprovisionofhopeandsupportbypeoplewhohaverecoveredfromtheillness,withadequatetrainingandsupport.ThiscouldbeachievedbyinclusionofBridgesorBodyEsteemintheplanningstages,andallocatingfinancialresourcetowardsconsumerparticipation.PeersupportinthisareaishighlyspecializedandprogramssuchastheBodyEsteemProgramhaveahighdegreeofskillandknowledgeinthisareathatcouldbeutilized.
Whilstwearedelightedtohearofthedevelopmentofaninpatientunit,wearealsoawarethatinsomewaysthisisprovidingtheambulanceatthebottomofthecliff.Thisisofcourseimportant,asitsaveslivesandprovidesintensivetreatmentfortheindividualswitheatingdisordersandassociatedseveremedicalandpsychiatriccompromise.However,wewouldalsostronglyrecommendthatyourlongtermplanaddressthedireneedinthecommunityforpeoplewithmildtomoderateeatingdisorders,forexamplebyfundinganddevelopingcommunityservicessuchasourselvesatBridges,toprovideinformation,referralandsupport,aswellasboostingcapacityofoutpatientservicessuchasCCIandthedevelopmentofawider
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arrayoftreatmentoptionsintheoutpatientandcommunitysector,preferablywithstronglinkstotheinpatient/day‐patientteam.WeareawareofverylongwaitlistsatCCIaswellasfrustrationbyconsumersaboutthelackofchoiceovertreatmentmodel.Thisserviceneedsexpansion,inadditiontootheroptionsbecomingavailableinothercommunityhealthsettings.Acasemanagementmodelisimportantforreluctantsuffererswithcomplexneeds.
SomethingthatweareconcernedaboutatBridgesistheinclusionofparents,carer’sandpartnersinthetreatmentprocess.Evenwithyouthandadults,familiesandsignificantothersprovideamajorityofcareandtheycanplayastrongroleinrecoveryorinperpetuatingtheillness.Wewouldsuggestthatparenteducationandskillstrainingisembeddedateverylevelofcare,includingtheinpatientsetting,Individualswillbevulnerabletorelapseandreadmission,iftheirsupportsystemsarenotwelltrainedandsupportedondischarge.
Thankyouverymuchforconsultingwithusonthisproject.WewouldbeverywillingtohelpandsupportanyprogresstowardsthegoalofimprovingservicesforeatingdisordersinWA.
Regards
JulieMcCormack
President
Bridges
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CommunitySubmission2:BodyEsteemRe:SubmissionforProjectInitiationProposalGivenourresourcesandthescopeofourprogram,Ididnotaddressthecriteriathatfocusesonthetypeofinpatientcarerequired.Ihavehoweverprovidedsomeanecdotalevidencethatmaybeusefulinsupportingtheneedforadditionalin‐patientcareforadolescentsaged16‐25,focusingprimarilyonthe16‐18yrgap.FromtheperspectiveoftheBodyEsteemProgram,weareawareofasignificantgapinserviceforwomenaged16‐18yrs,whoaresufferingfromaneatingdisorder.SpecificallyifthefamilydoesnothavePrivateHealthCover,therearecurrentlyveryfewtreatmentoptionsavailabletothem.Iassumethatyouknowaboutourservice,theBodyEsteemProgramonlyacceptswomenwhoare18yrsandover,anditisnotreallyatreatmentoptioninitselfbutratherasupportprocessforadditionaltreatmentsandtherapies.However,wearecurrentlyapplyingforfundstocreateaClinicalPositiononourteaminordertobetteraddresstheneedsofwomenunder18yrs,whowebelievearefallingthroughthegap.PMHdoesacommendablejobcaringfortheAdolescentsthatfittheircurrentcriteria.Itwouldbeahugerelieftoseethemresourcedtotreatgirlsover16inthenearfuture.Anecdotally,Ihaverecentlytakenseveralphonecallsfromverydistressedparentswhoareseekinghelpfortheirdaughters.IadvisethemtowritetolocalMPsetcbutthegeneralresponseisthattheyaresoexhaustedfromtryingtofindadequatehelpfortheirchildthattheyhavenotimeorenergylefttolobbytheircause.Someoftheexperiencesinclude:‐Awomanwhohada16yrolddaughterwhowassounwellshewashavingseizuresduetoherpurgingactivities.ThemotherhadtakenherdaughtertotheEmergencyWardofalocalhospitalandhadherhealthstabilizedbutshewasreleasedafter24hours.Withnoprivatehealthcover,andnospecializedpublicbedsinPerthforanadolescentofthisage,thewomanwaspreparingtorepeatthisscenarioanindefinitenumberoftimes.‐AnotherwomanwhowasintearsonthephoneasItoldherthattherewasnothingourProgramcouldoffer,asshesaidshehadphonedeverypublichospitalseekinghelpandhadbeencompletelyunsuccessfulinfindinganythingforher16yrolddaughter.‐A16yearoldgirlwithBulimiawhocontactedmeanddisclosedthatshewasregularlyself‐harmingandhadtwiceattemptedsuicidethroughoverdose.Giventhathercomplicationsandageputheroutsideofthescopeofthisprogram,IcouldonlyurgehertoseekhelpfromHeadspaceandCCI.‐Afatherwhocalledmebecauseoneofhisdaughter’shadgainedalotofsupportfromtheBodyEsteemProgramayearortwoago,andnowhisyoungerdaughterhasaneatingdisorderaswell.ShehadbeenadmittedtoHollywoodClinicbutforsomereason,founditverydistressing,sohewaswonderingwhatotheroptionsforInpatientTreatmentwereavailabletoher.IhadtotellhimtherewerenoneinPerth.
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‐MumsandDadswhoattendourParentProgramtobetterunderstandhowtheycansupporttheirchildthroughtheireatingdisorderbutwhohavetoacceptthattheirchildcannotaccesssupportfromourprogramforanotheryearortwo.GenerallyduringthistimetheirchildwillgoinandoutofHollywoodClinictohaveweightrestored,ifthefamilycanaffordit,orwillbeonthewaitlistforCCIforsometimeormayflyinterstatefortreatment,oraccesswhateverkindofalternativesupporttheindividualfamilymightfindforthem(sometimesthepsychiatricunitofthelocalpublichospital)Thesearesomeexamplesoftherecentchallengesfacedbyourprogramwhentryingtoprovideadequatereferralforpeopleindesperatesituations.AsanNGO,ourresourcesarelimitedtotheself‐helpgroupswefacilitateandweoftenfindthatwehaveverylittletooffersomeonewhodoesnotfitourcriteriaorwhoistooyoungorunwelltoaccessourprogram.Havingmorepublic,in‐patient,specialisedcaretodirectthoseenquiriestowards,wouldreducethechallengesfacedbyourteamandgreatlyassistserviceprovision.Wearehappytodiscussthisfurtherastheproposalprogresses.KindRegardsKathyLogieProgramCoordinator