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


* *


* *


0 * * 8 0


Adult18+




0 6 15 5 5


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


* * * * *

TrainingandSupport

* * * *

Adult18+

OutpatientServices

DayProgram


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

39

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

Youth Eating Disorders - Parliament of Western Australia · 1 1.0 Executive Summary This project...

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