exploring referrals into camhs, engaging with gps & …€¦ · • engage with camhs and...
TRANSCRIPT
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CYPMentalHealthExploringreferralsintoCAMHS,engagingwithGPs&understandingParent/Carerneeds
NHSEasternCheshire
ClinicalCommissioningGroup
Revised27July2016
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Reportpreparedby:STITCHLtd.
• ResearchandMarketingspecialists.• FullmembersoftheMarketResearchSociety.• FullyDBS(DisclosureandBarringService)checked.• W:www.stitchdigdeep.co.ukE:[email protected]• CompanyRegistrationno:07480919.• VATno:208974675
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Contents Summary&Context.............................................................................................................................4
ResearchPlan.......................................................................................................................................5
2.1. ProjectTimings...........................................................................................................................5
2.2. Objectives...................................................................................................................................5
2.3. Reporting....................................................................................................................................5
2.4. Audiences....................................................................................................................................5
KeyThemes&ObservationsSummary................................................................................................6
GPEngagement....................................................................................................................................6
CAMHSEngagement..........................................................................................................................39
ParentalEngagement.........................................................................................................................42
6.1 LetterRe-writing.......................................................................................................................42
Opportunities&Recommendations..................................................................................................52
ClosingStatement..............................................................................................................................57
Appendix:...........................................................................................................................................58
AppendixA. DeclinedCAMHSlettertoparent/familyofyoungperson..............................................58
AppendixB. DeclinedCAMHSlettertoGP...........................................................................................60
AppendixC. ParentStories...................................................................................................................62
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Summary&ContextNHSEasternCheshireCCGaretransformingchildren’smentalhealthservicesacrossthelocalityinlinewiththeMentalHealthTransformationAgendasetoutbyNHSEngland2015-2020.TheneedforthispieceofresearchwasdrivenbythetransformationofCAMHSservicestoimplementTHRIVEandtheapparentneedforbetterunderstandingofGPprocessesaroundCYPmentalhealthinprimarycare.MostimportantlytheneedsofparentsandcarerswhentheyaredeclinedCAMHStreatmentorarewaitingforsupport.Howgreatisthisneed?Whatistheneed?HowcantheCCGbestsupportCAMHSorotherprovidersindeliveringthisneed?Thefollowinginitialphasesoftransformationaretakingplacebetween2015-2016aspartofthewiderscope:EstablishingtheneedbyengagingwithkeystakeholdersEngagingwithkeystakeholderstounderstandtheirneedsandbehaviorsaroundmentalhealth.Thisincludesserviceusers,non-serviceusersandkeyinfluencerssuchasparents,carers,GPsandCAMHSclinicians.
EstablishingtheabilityandcapacityforchangeExploringserviceprovidercapabilityaroundtheimplementationofthenewTHRIVEmodel,asCAMHSmovestowardsatier-lessservice.ThisincludesexploringpotentialcapacitywithineachoftheTHRIVEquadrants.
Exploring‘ideals’ExploringwhatservicescouldlooklikeoutsideofthecurrentmodelinlinewiththeproposedTHRIVEimplementation.
Re-designingandcommissioningofservicesThisisthetransformationofCAMHSandIAPTmentalhealthservices.STITCHhavesupportedNHSEasternCheshireCCGinidentifyingGPneedsandexperiencesinrelationtoIAPTandCAMHSreferralprocesses.Thiswastoensuretheyarecommissioningeffectivelyandprovidingaservice‘fitforpurpose’.
Creatingactionsandidentifying‘quickwins’Here,NHSEasternCheshireCCGidentifiedthatGPsandCAMHSarekeystakeholdersintheyoungperson’sjourneyduringtheirmentalhealthchallenges.ItwasalsorecognisedthattoaddressanimmediateissueofoverwhelmingCAMHScapacityandlengthywaitingtimesforyoungpeople,weneedtore-designexistingprocessesaroundmentalhealthservices,aswellasidentifyingwhatsupportparentsandcarersneed.
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ResearchPlan
2.1. ProjectTimings
• Projectbriefing: 31May2016• Surveydesignandclientapproval: EarlyJune2016• SurveysenttoGPsforcompletion: 1July2016• Researchcompleted: 8July2016• Insightanalysis: 11-15July2016• Finalreportdue: 19July2016
2.2. ObjectivesSTITCHhavebeencommissionedtoexplorethefactorsaffectingtheCYPreferralprocessintoCAMHSandtheimpactthatthishasontheparent,carersandyoungperson.Throughqualitativeandquantitativeresearch,theteamwilldigdeeptounderstandtheprocess,expectationsandemotionalimpactoftheendtoendreferralsprocess.
Specifically,STITCHwill:
• Understand GP processes and behaviors around an under 16-year-old patient presentingthemselveswithmentalhealthproblemsataGPpractice.
• EngagewithCAMHSandunderstandthe'idealreferral'processforayoungpersonintoCAMHSfromaGP.
• Tore-designtheCAMHSreferralletterfromGPintoCAMHSandtheletter• Make recommendations for a parental support pack for when parents receive the 'declined
CAMHSsupport'letter-whatdotheyneedandwhy?
2.3. ReportingThisdocumentoutlinesafullwrittenreport,providinganoverviewofresearchfindings–bothstatisticalanalysisandqualitativeinsight.Thefollowingprovideskeythemes,recommendationsandisaccompaniedbytherawdatafromtheonlinesurvey.Itisstructuredintothethreerequirementsoutlinedabove.
2.4. Audiences
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KeyaudiencesforthisworkwereGP’s,parents&carersandCAMHScliniciansacrossEasternCheshire.TogiveusfurtherprojectinsightwealsospoketoaSENCOsupportworkerwhomakesCAMHSreferralsandayoungpersonwhoisawaitingherfirstCAMHStreatment.
KeyThemes&ObservationsSummaryKeythemesidentifiedduringtheengagement:
• LackofaccesstoCAMHSbyparents,youngpeople,GP’sandschoolreferrers.• Lackofawarenessof low-level support forbothU16yearoldpatientsandparentsoutsideof
CAMHS–forpatients,parentsandGPsleavingallpartiesisolated,atriskofidentifyingincorrectinformationandsupport
• Lotsofservicesupportprovidersofferingsupportbutnoclear,go-toplacefor informationforanypartyespeciallyparentsandGP’sofferingadvice/guidance/signposting.
• Quality of GP referrals into CAMHS within NHS Eastern Cheshire CCG’s is inconsistent. CCGdirectly receiving complaints from GP’s themselves and parents about referral process andassociatedcommunications.
• Need to revise referral process, duration and forms of communication to speed up andstreamlinereferralprocess.
• Lackofjoined-up,wraparoundcareforpatients,andlimitedsupportoptionsavailable.• Inappropriateness of services for patients and GPs consequently feeling over-whelmed with
demandsontheirtimeandfeelingtheirremitistoobroad.• ProfessionalsreluctanttorelyonCAMHSduetoinaccessibilityoftheservice.• CAMHSbeingunder-resourced/“toobusy.”• GPconcernoverthefactCAMHSrejectreferralswithoutseeingthepatientforanassessment.• CAMHSsayno;otherprofessionalservicesdon’t.• Parentsfeelingunsupportedandnotknowinghowtogethelp;noclearpathway.• Parents not feeling as though the professionals listen to them, and not understanding their
needs.• Importanceofschoolsbeingeducatedabouthowtheyoffersupport.• Lackofon-goingcommunication–nojoinedupapproachbetweensupportparties.
GPEngagement
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UnderstandingGPprocessesandbehavioursaroundanunder16-year-oldpatientpresentingthemselveswithmentalhealthproblemsataGPpractice.
Primary researchwas conductedwithGPs in the formofaworkshopandanonline surveywithinNHSEasternCheshireCCG’slocality.Thisprovidedbothqualitativeandquantitativeinsight:Workshop:
• WewerefortunatetobeabletoengagewithapproximatelyfortyGPsaspartofanNHSEasternCheshireLocalitymeetingonthe1July2016inCongleton.
Onlinesurvey:
• Wedesigned abespoke, branded, short online survey thatwas sent via email to allGPswhoattendedthelocalitymeeting.ItwasalsosenttotheircolleaguesatGPpracticestoensurewecaptured the wider view of GP’s and not just the most senior and experienced GP’s with aprevalentinterestinCYPmentalhealth.
Onthefollowingpages,youwillfindanalysisoftheinsightgatheredfromboththeworkshopandtheGPsurveycompletions(32intotal).
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SymptomstoomildOver80%ofGPsstatedthatanU16yroldpatientpresenting‘symptomsthatweretoomild’wouldmakethemunsuitableforareferralintoCAMHS.Existingdemand‘Existingdemand’[onCAMHS]wasalsoadominantreasonfornotreferringintoCAMHSwithnearlysevenoutoftenGPsselectingthis.ThiswasathemethatwasalsohighlightedduringtheworkshopwithGPs.TherewasadefinitefeelingthatCAMHSisnotanaccessibleserviceandthatconsequently,GPsarereluctanttorelyonitandsomedon’tevenconsiderreferringintoCAMHS.GPcomments:
“IAPTisbroken,butCAMHSsimplydoesn’texist.”
“IusuallyrecommendVisyon[alocalmentalhealthsupportorganization]tothepatient,asareferralintoCAMHSwillberejected”.
“Lotsoflowerlevelreferralsgetbouncedbacktous/rejected”
“IrarelyreferintoCAMHSasthere’snohopeofapatientbeingaccepted.”
“[Waitingtimes]aresolongthatIoftendon’tevenconsiderreferring.”
ThisGPestimatedthatshemadeonereferraleachyearintoCAMHS.ThissentimentwasechoedbyanumberofotherGPsintheroom.
Self-helpEffective
Anotherstrongresponsefromquestion1isthatnearlyhalfofGPswoulddeemapatientunsuitableforareferraliftheyfeltself-helpwouldbeaneffectiveremedyhowevertheydonotnecessarilyhavetheappropriatesupportmaterialstorecommendself-helpbecarriedouteffectively.Keyobservation–thefactthatsupportingmaterialsandsign-postingassociatedwithself-helpisinappropriateandunsuitableandisthereforeacontributingfactortoCAMHSreferrals–self-helpandlow-levelsupportneedstobeaddressed.
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AdditionalGPappointment:
AlmosteightintenGPssaidtheywouldofferan‘additionalGPappointment’withoneGPcommenting:
“FurtherGPappointmentusuallyrequiredtogetnecessaryinformationforafullassessmentofproblem.”
ThiswassubstantiatedattheGPworkshopwhereaGPoutlinedthatthereisusuallyaseriesofGPappointmentsrequiredinordertogetthenecessaryinformationabouttheyoungperson–thisisapotentialareaofconfusionasdifferentGPsmayrefertoCAMHSatdifferentpointsintime–afterthe1st,2ndor3rdappointmentforexample.
GPcomment:
“Mustn’tassumeitallhappensinoneconsultation–nineoutoftentimesweseetheparent/sfirst,thenseethechild.Mighttaketwoorthree
appointments.”
Supportgroups:
NearlytwothirdsofGPsurveyrespondentssaidtheywould‘inform[thepatient]ofsupportgroups’.Thefollowingsupportoptionswereoutlined:
• Visyon• JustDropIn• Schoolsupportservices(e.g.schoolnurse,schoolcounsellor)
Thesewereallmentionedbothwithinsurveyresponsesandattheworkshop.
Onlinesupportresources:
Thefollowingwerementionedaspartoftheinsightgatheredthroughthesurveyandtheworkshop:
• FearFighter• MoodGYM• BigWhiteWall
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Lackofsupportoptions:
OneGPoutlinedalackofsupportoutsideofCAMHSforunder16yrolds:
“Ireallystrugglewithavailabilityofsupportserviceslocallyforchildren.WhenCAMHSfailsorisinappropriate,wefeelstuck.”
Fromourexperiencethisislikelyduetobetolackofknowledgeandawarenessofotherservicesandtheperceptionthat“onceit’sprintedit’soutofdate”whenreferringtoprintedsupportmaterialsfortheyoungperson.
Keyobservation–inconsistentmaterials,outofdateresources(BigWhiteWall)beingreferencedandaclearneedtocreatesomethinguptodate,relevantandeasilymodifiedtoavoidbeing“outofdate”.
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Treatmentisdependentonage
Overhalfofrespondentsstatedthattheywouldtreatachild/youngpersondifferentlydependingontheirage.Under5yearsoldwasreferredtoseveraltimesbyGPsandseemedtobetheagewheretreatmentwasdifferentiated.
GPcomments:
“Under5oftenneedhealthvisits/behavioural/parentalsupport.Forteenagers,[I]oftenrefertoorsuggestVISYON.”
“Veryyoungisunder5years.IwouldusetheHV[HealthVisitor]team/familysupportworker.ConsideraCAFover17,andImightconsiderprescribingbut
rarelyso.”
“Clearlythetreatmentofa5yearoldisverydifferenttoa16yearold.Visyonavailableforolderchildren.”
“…ofcourseItreata5yrolddifferentlyfroma15yrold.”
“Under5’sinvolveHV[HealthVisitor].Primaryschoolagemorelikelytoinvolveschoolnurse.”
This‘cutoffpoint’at5yearsold,alignswiththegroupingofchildrenintopre-schoolvs.school-agedchildren.Perhapsthisrepresentsanopportunityforpre-schoolandschoolsettingstobemoreinvolvedwithstructured,tailored,age-appropriatesupport.
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OtherdifferencesinGP’sapproachdependingontheageofthechild/youngperson:
“Theyoungertheypresentwithissues,themorelikelyIamtoseekCAMHShelp.Asusual,itdependsontheseverityofthesymptoms.”
“[For]youngerchildrenIbelieveparentalsupport[is]morevaluable–aschildrenbecometeenagers,theyareoftenmorelikelytoengageinservices
externallytofamily–sometimesfamilylifetriggersproblems.”
“[I]referearlier,theyoungertheyare.”
“Veryyoungchildrenneedtobeassessedfordevelopmentalconditions.”
“…advisedifferentresourcesandcontactsbasedonage.”
“Youneedtoadjustanyconsultationbasedontheneedsofthepatient.”
“Iftheyhavecapacity,Iamlikelytobeguidedmuchmorebytheyoungperson,althoughobviouslyconsideringparents’viewsaswelliftheyhaveattended
withthepatient.”
ThereweremanycommentsreceivedalongsidethissurveyquestionwhereGPsoutlinedtheirreluctancetoprescribemedicationtochildrenoryoungpeople:
“Iwouldnotprescribetothisagegroupwithoutthepatienthavingasharedcareagreementwithaconsultant.”
“Iwouldbeunhappytoprescribetounder15’s.”
“Iamreluctanttoprescribeanti-depressants.IfeelImayneedtoinvolveparents.”
“Muchlesslikelytousemedicationthelowertheage.”
“Wouldbeuncomfortableprescribingforunder18.”
“Iwouldbereluctanttoinitiatemedicationinapatientunder16withoutspecialistassessmentinitially.”
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Keyobservation–theroleofparentingidentifiedascriticalinthetreatmentandcareofthechild.Fromresearchwithparentstheycaneasilyfeellostandunsupportedsotheyneedtangibletoolstosupportthem.
Supportresources/toolsunavailable
OverhalfofGPsfelttheydidn’thavesupportresources/toolsavailablewithinyourpracticetogivetoachild/youngpersonunder16withmildmentalhealthconcerns.
“Verylimitedavailability.Nofundingtoprovide.”
“Awebsiteneededwithinformationandlinkstoanonlineadviceforpatients.”
“Notenoughresources.”
“Limitedresources–online,JDI.”
“ApartfromdirectingtoBigWhiteWallandotherself-referralservices,noothersupportservices/tools.”
“NosupportserviceslocallyotherthanVisyon.”
Existingsupporttoolsaren’tadequate
“Allthisstuffgoesoutofdatetheminuteitisprinted.Anupdatedonlineinformationresourcewouldbebetter.”
“WeweregivenapackbyCAMHSwhentheyvisitedwithalistofself-helpwebsites.Theyareavailable,butgenerallyself-helpdoesnotseemtomeetparentexpectationsandIthinkthisisthebigproblem…parentsexpect
everythingtobereferred.”
ThereweresomesuggestionsfromGPsfordesiredsupporttools:
“Writteninfoandonlineresourceswhichareage-appropriate.”
“Localinformationofavailableservicesforyoungpeople.”
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“Someformofcounselingparticularlyforolderteenagegroups.Morespecificleafletswithresourcesforunder16sratherthan‘generic’onewithJustDropIn
asonlyoneforthisage.”
“Onlineresourcewithprintablematerialtohandtopatients.”
Keyobservation–existinghighdependencyonprintedmaterialswithinconsistentawarenessofwhatisavailablebetweenGP’sandconsensusofnotenoughresourcesavailable.
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WritealettertoCAMHS
100%ofGPsstatedthattheywouldwritealettertoCAMHSdescribingintheworkshophowtheprocessvariedsomesaidthey“penaletterattheendoftheday”andforothersitwasimmediatelyaftertheyoungpersonappointment.InallcircumstancesthisbespokeletterwasgiventotheadministrationsupportandsentontoCAMHSvia1stor2ndclasspost.
Aspartofthisandadditionally,asmallproportionofGPsdefinedthisfurther,explainingtheiractionsshouldthereferralbeurgent:
“Ifurgent,Icalltheoffice.”
“Ifuncertainorurgent,Iphonethem.”
“Ifurgent,Iwouldfaxaletterandringthesamedaytodiscuss.Iflessurgent,Iwouldsendaletter.Ifunsure,Iwouldaskadvicefromacaseworker.”
ThecurrentprocessfromthepointofreferralintoCAMHSismappedbelow–inthisinstancewehaveaddedonescenarioof‘insufficientinformation’receivedfromtheGPintoCAMHS.N.B.GP’sstatedittakesonaverage2-3appointmentbetweentheGPandCYPbeforetheymakeaCAMHSreferral(ifatall):
• Day1-CYPhasappointmentwithGP• Day1-2–ReferralletterwrittenandsenttoCAMHS–1stclass(thiscouldbeattheendofthe
dayandthereforesentthenextday)• Day2-3–CAMHSreceiveletterfromGP• Day 2 - 4 – CAMHS clinical team review letter, reply to GP with request for additional
informationvialettersend1stclasspost• Day5–GPreceivesCAMHSletter• Day6–GPamendsletterprovidingadditionalinformationandsendstoCAMHSvia1stclasspost
letter• Day7–CAMHSreceivesamendedletterfromGP• Day8–CAMHSreviewscaseandmakesrecommendation–acceptordeclinereferral
Thisprocessisatightlystreamlined,optimisticversionoftherealprocessanddoesnottakeintoaccountabsence,holidaysetc.Timeiswastedusingthepostinsteadofemailanddraftingbespokeletterswithoutanyconsistentstructureortemplates.
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Theuseoftemplates
ItisclearthattherearenoformalorinformaltemplatesusedbyGPswhentheymakereferralsintoCAMHS.Interestingly,duringtheworkshopwithGPs,whenthequestionoftemplateswasraised,acoupleofGPsexpressedstrongviewsthattemplateswouldnotbeawelcometoolforthemtouse.Whenweprobedfurther,oneGPcommented:
“Templatesdon’tworkandaren’twelcomedbyGPsastheytrytoshoehornproblemsintoboxesandtheyneverfit.”
AtSTITCHwebelievethattheremaybeacompromisewhenitcomestotemplatesandsohavesuggestedabrieftemplatethatpromptstheGPfortherightinformationbutalsoenablesfreetextastonotlettheGPfeelprescribedtoorasiftheyareenteringpotentiallyforced,orincorrectinformation.
Interestingly,JaneEdwards–PrimaryMentalHealthWorker/TeamManager/TeamcoordinatoratCWP-andGPsbothasserted(separately)thatthereisn’tanyrealissueregardingthequalityofGPreferralsintoCAMHSwithintheNHSEasternCheshireCCGlocality:
“Referralshavebeenokforawhilenow.Thereislackofinfoinsomecasese.g.GPssometimesseejusttheparentsandnottheyoungpersonandthereferralmaythenbedeclinedbasedonalackofengagementwiththeactualyoung
person.
Weknowthistobenotthecasewithotherlocalitiesfromotherprojectwork,andJaneEdwardsherselfcommentedthatthe“qualityofreferralsmayvarybyregion.”
Overthecourseofthelast12monthshowever,therehasbeensomeGPtrainingcompletedwithintheNHSEasternCheshireCCGlocality(acrossA&E,GPOutofHours,GPSurgeries,Children'sWard).ThetrainingwasconductedbytheCheshire&WirralPartnershipYoungAdvisers(CWPYA’s)andalargepartofthisfocusedonimprovingGPreferralsintoCAMHS.WebelievethisisalargecontributoryfactortotheagreeablereferralformatthatisnowinplacewithintheNHSEasternCheshirelocality,betweenGPandCAMHS.
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AlmosthalfofGPrespondentsweren’tawareoftheaveragewaitingtimesforCAMHStreatment,andafurther24%guessedincorrectly(lessthan16weeks).AthirdofGPsknewthattheaveragewaitingtimeis16weeks+.
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DoyouhaveanycommentsregardingwaitingtimesintoCAMHS?
All32GPsurveyrespondentscommentedonwaitingtimes.Themajoritystatingthattheywere“toolong”andthat“ofcourse,[waitingtimes]wouldideallybeshorter.”
OneGPdescribedtheimpactthatthelengthywaitingtimeshaveonhissignposting:
“[Waitingtimes]aresolongthatIoftendon’tevenconsiderreferring.”
Therewasageneralconsensusamongstthecommentsthatachild/youngpersonhastobechronicallymentallyunwellbeforethey’llbeabletoaccessCAMHS:
“[waitingtimes]areabitlong,soIonlyreferchroniccases,orthosewithasignificanthistoryofself-harm/multipleODattemptspreviously.”
“Toolong.Myimpressionnowistheywillonlysee'seriouslyunwell'patientsandthoseatriskofsuicide.”
Mostofmyrecentreferralshavebeenrejectedattriageasthechildhasn't
beensuicidalenough.ASDandADHDassessmentstakefartoolong.AnumberofGPrespondentsalsohighlightedthe(inmanycases,serious)impactonpatients:
“Oftenlongwaittime.Patientsfeelunsupported,andcrisisoftenoccursinthisperiod.”
“Toolong,inadequateprovision.Ihavehadyoungpeople/andtheirfamilies
whoIfeelneedprofessionalhelpturnedaway.”
“Seemfartoolongparticularlysincethechildren(andparents)arequitedesperate.”
“Seemsslowandunresponsive.AsaGP,Idealin10-minutetimeunitsandurgencyinhoursanddays.CAMHSseemstodealinweeksasurgentand
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monthsifnot.Frustratingasitleadstopatient'snotrespondingtooastheyfeelissueshavechangedbythetimetheyarecontacted.”
“Patientsoftenexpressupsetatlongwaitingtimesaddingtothefrustrationin
thefamilyunit.”
“Notreallyterriblyresponsive.Hardtoselltopatientstoengage,especiallyinwhatcanbequiteanuncomfortableproblemforthem-Youmayonlyget1
chancetohelpthem...”
SomecommentswerereceivedaroundwhatGPswouldliketosee:
“Toolong.Needadvicelineforparents.”
“IfeelveryfewpeopleareactuallyseenbyCAMHSandmostaredowngraded.Iwouldliketoseeanurgentapproachtosomereferralsifneeded.”
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Itisclearfromtheresponses,thatthereisclearcommunicationfromCAMHStotheGPwhenareferralisdeclinedwithsevenintenGPsstatingthat“Yes,[they’re]always”madeaware.
Therewereafewsuggestionsreceivedhoweveraroundmakingtheprocessbetter:
“Ithinkwealwaysgetaletterbutmoreinfoaboutsuggestedalternativesupportwouldbeuseful.”
“Pleasecanletterdetailreasonsforreferralbeingdeclinedwithsuggestionsfor
alternatives?”
“Iunderstandtheserviceisstretchedbutsoisgeneralpractice.Wedon'tturnpatientsawayjustbecauseweareverybusy.Iunderstandthattheprocesstheyhavetoundertakeistimeconsuming.Maybea10-minutefacetofacetriagewiththechildwouldmeetthe
parentalexpectation.”
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GP’sdealwiththepatient
• Over 80% of GPs deal with the patient themselves – either through inviting them back foranother appointment (45% of respondents), or offering the patient resources/information(37%).
• Onlyasmallproportion(15%)ofGPssignpostedtoacharity/supportorganization,andjust6%aredealtwithbyCAMHSthemselves.
• Again,aGPreferredtothefactthatCAMHSturnpatientsawayduetotheirunder-capacity,yetGPs don’t. This particular GP highlights below the potential risks of CAMHS not reviewing apatientface-to-face,andalsotheextremelynegativeeffectthisishavingontheGPthemselves:
“Difficult.Oftenafrustratingprocess.IhaveaskedCAMHStophonethefamily
whentheyaredecliningthereferraltodiscussdirectlywiththemoptionsbut
theyfeeltoobusy.Ineverfeelappropriatetodeclineseeingapatientinneed
onaletter.IfaGPrefers,theyfeelthepatientneedstobeseen.Mentalhealth
istheonlyspecialitythatfeelsitisappropriatetodeclinewithoutseeingor
assessingthepatient.Ihavenoissueifconsideredinappropriatehaving
assessedthepatient,buttodeclinetoreviewsomeonewithoutseeingthemis
poor.CAMHShavenowayofknowingwhethertheyareinappropriately
refusingtoseepatients.TheironyisoftenwhendeclinedbyCAMHSbecauseof
workload,thepatientsaredealtwithbytheirGPs.Wearebusy,verybusybut
wecannotturnpeopleaway,wejusthavetoworkharder.Weareatbreaking
pointandworkloaddivertedfrommentalhealthisoneofthethingswhichis
breakingus.”
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“WhatarethebiggestchallengesorconcernsyouhavewhenitcomestoCAMHS?(Pleaseansweropenlyandhonestlyandthinkaboutpatientcare,processes,availableresources,yourknowledgeofCAMHSandanyotherareasyouwishtocommenton).”
Thisquestionhighlightedseveralthemesthathadbeentoucheduponinthepreviousquestionsandresponses.
Therewasaprevalentthemeofinsufficientresource:
“Therearenotenoughresourcestosupporttheincreasingnumberofyoungpeoplewithmentalhealthproblems.”
“Perceivedhugelackofresource.”
“Overalllackoftimelyresources.”
“Capacityforgrowingdemandandwaittimes.Increaseineatingdisordersand
timefromCAMHSreferraltoeatingdisordersclinictotreatment.”
“Suchalimitedresourceandmanyparents/childrenneedingsomeformofsupport.”
“Slowresponse,notalwaysadequate,limitedcommunication.”
“Lackofaccess.”
“Overloaded”
“Serviceisstretched.”
“Limitedresource.Endlesspoolofteenageangstandstrugglingwithidentity
evenwhensocialsupportisaveragetogood.”
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Waitingtimeswasanotherstrongthemeseenintheresponsestoquestion11,withoveronethirdofGPsnotingthisisabigchallengewhenitcomestoCAMHS.Ofcourse,thisislinkedtoinsufficientresource.Examplecomments:
“Waitingtimestoolong.”
“Promptresponsenotalwaysforthcoming.Ifissuesarenottackledearly,theyoftenescalateintomuchmoresignificantproblemslateron.”
“Longwaitingtimes.”
“Theincreasingmentalhealthproblemsinchildrenisaconcern.Therefore,waitingtimestoanappointmentremainthemainconcern.”
“Waitingtimesreallylongifthey[thepatients]areaccepted,andfeelleftin
limbowhilstwaiting.”
SeveralGPsreferredtoalackoflower-levelsupport(again,duetoinsufficientresources):
“Theyjustseemtohaveresourcefortheworstcasesthecrises.Weneedtoresourcethelessseverebeforeitbecomesacrisisanda10-minuteGP
appointmentisn'tenough.Wecannotinitiatemedicationsowhatwecandoislimited.”
“OnlysuicidalpatientsseemtobetakenonbyCAMHSwithlimitedfollowup.”
“[CAMHS]donotmanageanybutsevereillnesses.”
“…capacityonlytodealwithmostseverelyill.”
“Accessandlevelofresourceseemstobeonlyavailabletoveryunwellpatients.”
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“Theissuesis,ifthey[CAMHS]declineareferralwhenschoolhealthhaveencourageditandtherearen'tothersupportsinthecommunitytohelpthem.Wedon'tgetmuchinfobackoncechildrenourintreatment,butalwaysget
letterbackquicklyifreferralhasbeendeclined.”
“Rapidlyincreasingdemandformentalhealthservicesfromparents,schoolsetc.Reluctancetodealwithanysortofminormentalhealthissueswithout
medicalinputinthecommunity.”
AcoupleofGPcommentshighlightedaconcernoverthefactCAMHSrejectreferralswithoutactuallyseeingthepatientforanassessment:
“ItistheonlyspecialitythatIrefertowhowillrejectareferralwithoutseeingthepatient.”
“Mildtomoderatementalhealthproblemscanbeforrunnerforsevere,but
theydon'tgetseen.”
AcoupleofGPsexpressedconcernaboutthelackofpatientinformationsentfromCAMHS(whilstthey’reintreatment)totheGP:
“[Thebiggestchallenge]isnotknowingwhatwillhappentothepatientwhenIrefer.”
“Wedon'tgetmuchinfobackoncechildrenourintreatment.”
AdesireforwidersupportandresourceswasoutlinedbytwoGPs:
“…nootheralternativesavailable.”
“FurtherawarenessofresourcesandotherorganisationsthatIcouldreferdirectlytoifsymptomsweren'tfelttowarrantaCAMHSreferral.”
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Othercommentsbelowindirectlyhighlightpotentialareasforimprovements:
“Alsoratherthanrejectreferrals,itwouldbemoreusefulifCAMHSactuallyredirectedthereferraltothemoreappropriateservicedirectlye.g.Visyon.”
“Lackofafter5pmsupportavailablelocallytoo.”
“Lackofdirectcontactwithteammembers.”
Thevalueofturningtheseideasintorecommendationswouldneedtobeassessed,astheseweresinglecommentsfromindividualGPs,soaren’tnecessarilyaviewrepresentativeofanumberofGPs,andsomaynotrepresentanygreatneed.
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“Whatwouldbethe'ideal'modelforCYPPrimaryCareMentalHealth?”
Therewerefivekeythemeshighlightedintheresponsestothisquestion,including:
• Easyaccess/SinglePointofAccess• Arevisedassessmentprocess• Widersupport• Practice-basedservice• Schoolsupport
EasyAccess
“Easyaccesstoguidance-phone/email/text/socialmedia.Engagingwithchildreninalessformalwaymayencourageengagement.Tryingtothink
abouthowthisgenerationofchildrencommunicateusingonlineresources.”
“Easyaccess,lotsofdifferentresourcesbutasinglepointtoaccess.”
“Quickassessmentandaccesssupportandsignpostingifunabletohelp.”
“Singlepointofaccess.Quickresponsei.e.withinaweekortobecontacted.”
“BetteraccesstoservicesandotherorganisationsinvolvedwithCYPmentalhealth.”
“Singlepointofaccess/gatewaythatcouldaccessthebreadthofCAMHS
servicesincludingsupport/voluntarysector/online/Drop-inetc.”
“SPA-asalwayswithanexperiencedclinicianasfirstlinewhocansiftandsignpost.”
“Openaccess.”
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“Betteraccesstochildpsychiatry.”
Keyobservation:SimilarinsighttotheCYPnon-serviceuserreportinMarch2016andyoungAdvisorreportApril2016whereyoungpeoplewerealsolookingforaneasytoaccess,cleartonavigateservicewithacentralsourceofinformation/pointofreferencetonavigatetoandfrom.
Arevisedassessmentprocess(potentiallybypassingGPs):
“Triage/assessment/advice/signpostingifnotseeingpatientandPROMPTassessmentofthemoresevereendofthespectrum.”
“Aletterbacktoafamilywhosaystheywon'tbeseenbecausetheirchildisnotbadenough.....yet.....isnotacceptable....iftheGPhasreferredthechildsurely
theyatleastneedaformalassessment????”
“AnIAPTapproach-haveinitialr/vandthendeterminetreatment/followupbasedonthis.”
“Self-referralandtriage/phonereviewinitially-likeIAPTs.”
“Ideallysometriagingofferingsomeformofshortinterventiontothemilder
issues.”
“Assessmentinpersonratherthanonthebasisofletter.”Widersupport:
“HavingakeyworkerforeachpeergroupwhocouldactasliaisonbetweenGPsandpatients,informusofpatientprogressthroughthesystem,informus
oflocalservicesandperiodicallyattendourpracticelearningevents.”
“Rangeofservicesavailable.”
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“Workersineachlocality.”
“Ithinkitwouldbehelpfulifthereweremorelocationsavailablefordrop-insasitisdifficultforyoungpeopletoaccessservicesonlyprovidedinadifferent
town.SoIthinkthereneedtobemoreservicesprovidedlocally.”“Moreservicesatlowertierspatients.”
“Variouslevelsofhelpandsupport.Notaone-size-fits-allsituation.”
“AnetworkofresourcesthatGPs/patientscanusetoofferhelpwithina
reasonabletimeframe.”
“CAHMSwebsitelistingusefulup-to-datewebsitesforchildrentoaccessthemselves.”
Practice-basedservice:
“Whethertherecouldbeacounsellingserviceactuallybasedinthepracticeforyoungpeople.”
“Ahighlyskilledmentalhealthworkertodoregularsessionsinourpractice
thatwecouldreferto.”
“Practicebasedservice.Onehalfdayeachmonthineachofthe22practicestoallowpatientreviewsandalsotoallowameetingbetweenpracticeand
CAMHSpractitionertodiscusscasesofconcern.”
“Awell-resourcedIAPTtypeserviceprovidedfromGPpremiseswithconsultantbackupandNOfalsedivisionbetweenprimaryandsecondarycarethatwe
currentlyhavewithIAPT.”Schoolsupport:
“Clearerroleforschoolnurse/healthvisitorsinreferrals.”
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“Moreinputinschools.”
“Workmuchcloserwithschoolsandprimarycare.”
“MoreintegrationwithPrimaryCareandschoolbasedservices.”
Therewereanumberofother‘ideals’outlined:
Educationforchildrenandyoungpeoplearoundmentalhealth:
“Moreeducationforchildrenwithregardsmentalhealth,bullying,drugsandalcohol,ADHD,autism.”
Shorterwaitingtimes:
“Shorterwaitingtime.Althoughappreciatethecurrentfinancialclimate.”
“TimelyresponsetoneedabletodealwithmildMHissues.”
Parentalsupport:
“Advicelineforparents.”
“Weneedcounsellingandfamilytherapyformild/moderateissuesevenparentingclassesforbothchildrenandteenagers.”
“Thereseemstobemorebehaviouralissuestooandmoresupportwouldbe
niceforparentsaboutthis.”
Betterrelations/communications:
“Improvedliaisonbetweenschool,GPandmentalhealthservices.”
“GoodcommunicationwithGP.”
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Longercomments,coveringanumberoftheareasabove:
“IwouldloveasystemwhenifIachildneedstobeseen,thatchildwillbeseen.IwouldliketoseechildrenbeingreferredfromschoolandotherappropriateplaceswithouthavingtogothroughGPifappropriate.Iwouldlikeexcellentfeedbacktouswhenappropriate.IwouldlikeseamlesstransferofcarefromCAMHSto16-19serviceIwouldlikeacoordinatorwhowouldtakeownershipofapatientandifoneagencyrefusestoseethemistaskedtomakesurethat
theirneedsaremet-GPsjustdon’thavethetimetodothis.”
“InitialappointmentwithGP.Referraltoacentralpointofaccess.Pre-appointmentinformationgatheringbythisservicetoincludecorroborativehistoryfromrelevantsourcese.g.schoolnurse/SENCO/schoolcounsellor/
family/whomeversentthechildandparenttotheGPadvisingthemtheyneedaCAMHSreferral.SubsequentFacetofaceTriagewithsomeonespecificallytrainedinCAMHS,possiblypeergrouporpracticebasedtoavoidtravellingtoMacclesfieldforeverythingandreducingDNAs.Appropriateonwardreferralto
psychiatry/counselling/selfhelp/parentingcourse/socialservices.”
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CAMHSEngagement
Understandingthe‘idealreferral’forayoungpersonintoCAMHSfromaGP:
WeengagedwithCAMHSClinician-JaneEdwards–PrimaryMentalHealthWorker/TeamManager/TeamCoordinatorinEastCheshire.Sheprovidedsomeexcellentinsight.
Whenaskedwhatmakesareallygoodreferral,sheoutlinedthefollowing:
“Thethingwereallydoneedinmentalhealthreferrals:
1.Historyofthementalhealthsymptoms-whattheyare,howlongthey'vebeenpresentfor.
2.Impairmentoffunctioning-howdothosesymptomsaffecttheyoungperson’slifesocially,atschool,athome.
3.Risk-risktoself...havetheyanysuicidalthoughts?Arethosethoughtswithintent?Anyself-harm,riskfromothers,risktoothersetc.
4.Anyrelevantfamilyhistoryinfo-aparentalseparation,oranacrimoniousdivorce,siblingissues,familyhistoryofmentalhealthissues.
5.Doesthepersonhaveanysignificantenduringmedicalphysicalissuese.g.disabilities?
6.Anyideasaboutwhat'shappeningatschool-bullying,strugglingwithschoolwork.Ifit’sareferralforanAutismoranADHDassessment,wewouldneedacleardescriptionofsymptomsfortheseassessmentstotakeplace.”
WethenaskedJaneiftherewereanyissuesaroundGPreferralsintoCAMHS.Shereplied:
“Onthewhole,mostGPsnowsendareallygoodreferral.They’vehavebeenokforawhilenow.Theremaybealackofinfoinsomecases,buttheseareunusual.”
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ThisdeclarationwassupportedattheworkshopwithGPswheretheytooassertedthattheirreferralsrarelygetsentbackduetothembeingsub-qualityorcontaininginsufficientinformation.Thefindingwasthatthereisn’tanyrealissueregardingthequalityofGPreferralsintoCAMHSwithintheNHSEasternCheshireCCGlocality.
Janeconveyedthatoverthecourseofthelast12months,therehasbeensomeGPtrainingcompletedwithintheNHSEasternCheshireCCGlocality(acrossA&E,GPOutofHours,GPSurgeries,Children'sWard).ThetrainingwasconductedbytheCheshire&WirralPartnershipYoungAdvisers(CWPYA’s)andalargepartofthisfocusedonGPreferralsintoCAMHS.WebelievethisisalargecontributoryfactortotheagreeablereferralformatthatisnowinplacewithintheNHSEasternCheshirelocalitybetweenGPandCAMHS.
WeaskedJanewhatwouldconstituteapoorreferralfromaGP?Sheanswered:
“GPssometimesseejusttheparentsandnottheyoungperson-referralmaybedeclinedbasedonlackofengagementwiththeactualyoungperson.Anotsogoodreferralwouldbe‘couldyouseethis14yearoldboywhoishearingvoicesandisdelusional.He'sonmedsforsleep,mayhaveADHD.’Insucha
case,wewouldwritebacktotheGPandrequestmoreinformation.”
WealsoaskedJaneif,fromherperspective,arethereanyissuesaroundthedeclinedsupportlettersthataresenttoparents[ofpatients]informingthemtheirchildhasbeendeclinedCAMHSsupport?
“Sometimesparentsringandwanttoknowabitmoreaboutwhytheirchildhasnotbeenaccepted.Ortheymaycomplain(inwhichcaseweforwardthemtothecomplaintsprocedure).Ortheymaysaytheirchild’ssymptomshavegot
worse.Parentsdon'ttendtocomplainabouttheletter,andnoGPshavecomplainedatall.”
DespiteJane’sassertionthattherearenocomplaintsabouttheletter,itwouldseemthatsomeparentswantmoreinformationaroundthereasonstheirchildhasnotbeenacceptedintoCAMHS.Similarly,JaneconfirmssomeparentsphoneCAMHSastheywanttochallengethedecision.Eitherway,moredetailedandmorepersonalisedinformationcontainedwithinthelettermayhelptoappeaseparentsandreducesuchphonecalls.
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WethenaskedwhatsupportareparentsofferedwhentheirchildisdeclinedsupportbyCAMHS.Janereplied:
“Thereistheparenthelpline.Thisismainlyforthechildthemselves.Ifit'sabehaviouralissue,wewouldsuggestchecksfromtheirsupportworker,orthechildren'scenter.Theseservicessupportthewholefamily.Thereis
nolocalsupport.”
WeaskedJanewhatsupportshewouldliketoseeparentsofferedwhentheirchildisdeclinedsupportfromCAMHS.Shereplied:
“WhenweseeayoungpersoninCAMHS,wedoofferparent-supportaswell.Forchildrenunder11yearsold,weasktheyoungpersoniftheywanttobeseenalone,buttheyusuallywanttoseeuswithmumand
dad.Teensusuallywanttoseeusontheirown.
Whenachild/youngpersonisnotaccepted[intoCAMHS]though,thereisnoparentalsupport.Iftheparentsarestrugglingtheytendtomake
contact.Wehaveadutyprofessionalhere9am-5pmMonday-Friday,butIdon'tthinkthisishighlightedintheletter.”
ItisclearthatthereisagaparoundthesupportthatisofferedtoparentsshouldtheirchildbedeclinedaccessintoCAMHS.Janeoutlinesthatparentswouldmakecontactifthey’restruggling,butifthat’sthecase,CAMHSwouldn’tbeawareofthoseparentswhoarestrugglingyetdon’tmakecontact.Opportunitytoincludethedutyprofessional’sdetailswithinthelettersenttoparentsdecliningsupport.
STITCHhavere-writtentheletterwhichissentfromCAMHStoaparentiftheyaredeclinedCAMHStreatment.Thiscanbefoundintheappendices.Wehavefocusedonmakingtheinformationwithinbothlettersclearer,alignedincontentwherepossibleandmorepersonalbyadditionalreferencestothenameofthepotentialserviceuser.
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ParentalEngagementSTITCH conducted several one-to-one, face-to-face interviews with parents of children/young peoplegatheringparentstories,inordertounderstandtheirneedsintermsofvaluablesupportforthemselves.We also conducted desktop research, finding examples of existing parental-support tools/resourceswithintheUK(seeappendix).SomekeythemesalsobecameevidentduringengagementwithinthisprojectwithCAMHSandGPs:
• Parentsfeelingpowerlessandunsupported.• Notknowingwheretoturn.• Lack of low-level intervention support before CAMHS appointment (in the instances they are
accepted)• Highlevelofinterdependencybetweeneachother–parentandcarersupportgroups• LackofunderstandingfromtheGPabouttheexpectationwithinCAMHSandalternativesupport
availablebothlocallyandonline.6.1 LetterRe-writing
EmmaLeighfromEasternCheshireCCGidentifiedthattheexistingletterswhicharesentbetweenGPandCAMHS(whenmakingareferraltoCAMHS)andCAMHSandtheparents/families(whenbeingdeclinesupport)needreviewingtoensuretheirmessages,purposeandcallstoactionareclear.
DeskresearchhasshownusthattheCCGreceivelettersonaweeklybasisfromparentsofyoungpeoplewhohavebeendeclinedCAMHSsupportandareunhappywiththelettertheyhavereceived.Similarly,GP’scomplaintotheCCGabouttheprocess,CAMHScapacityandthelackofclarityaroundwhatmakesagoodCAMHSreferral.STITCHhavere-writtenbothlettersandattachedthemwithintheappendicesforreviewandcommentinanattempttoimproveuponwhatalreadyexists.
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ParentStoryNo.1:Mumof8-year-oldboy.ThismumhighlightedthepivotalroleschoolscanplayinhelpingchildrenandyoungpeoplegainaccessintoCAMHS.Sheisamumofanautistic8-yearoldboyherself,herfamilyhasahistoryofautism,andshe’sheavilyinvolvedwithalocalautismcharity.SheactuallyhadapositiveexperienceherselfinaccessingCAMHS,butshehighlightedthiswasbecausetheschoolhersonwasatwasaspecialistschoolandwereinformedaboutmentalhealthconditions,andsupportedthereferral.Sheknewofseveralothercaseswheretheschoolsweren’tsupportiveofthereferralandasaresult,weren’tabletoaccessCAMHS.Sheoutlinedthatacommonproblemisthatmanychildrenwithautism(thoughnotall)willdisplayconsiderablydifferentbehavioursindifferentsettingse.g.holdingittogetheratschoolandthen“losingit”athomeandpresentingsymptomsofpoormentalhealth.Thismeansthatoften,teachingstaffattheschoolaren’tawareofthebehaviourandthereforearen’tabletosupportreferralsintoCAMHS,leavingtheparentveryfrustrated.Thismumreferredtoabloggerwhoworksinthisspace–LukeBeardon.LukeisamemberofstaffinTheAutismCentreatSheffieldHallamUniversity.HehasbeenworkingasapractitionerprovidingsupportandconsultancyinthefieldofautismandAspergersyndromeforaround20years.Hewritesabouttheissueofhowsomeautisticchildrendisplaydifferentbehavioursindifferentsettings.Itwouldbevaluableforschoolstounderstandthis.
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ParentStoryNo.2:MumandGrandmaofAnnabelle,7yearsold.Theyfirstbegantoworrysomething“wasn’tright”whenAnnabellewasaround2yearsold.TheywenttoseetheirGP,whoreferredthemtoapaediatrician.ThepaediatriciancontactedtheschoolwhoassessedAnnabelleandsaidthereisnothingwrong.TheyhavehadaspeechtherapistgetinvolvedwhoevaluatedAnnabelleinsideandoutsideofschool,andfoundhertobeverydifferentinthedifferentsettings.Astheschoolhassaidthatthereis‘nothingoutoftheordinary’withAnnabelle,theyhavenotbeenprogressedanyfurtherandarenoclosertogettingadiagnosis.TheytakeAnnabelletogymnastics,whereotherchildrenwithspecialneedsgo.ProfessionalstherehavesaidthatintheirexperienceofdealingwithchildrenwhodisplaysimilarcharacteristicstheybelievethatAnnabellecouldverywellbeAutistic.Theyarenowatapointwheretheydon’tknowwheretoturnastheyfeelthehealthprofessionalsareignoringtheirconcerns.
***Thetimeframewiththisparentstoryisfiveyears,anddespitehavingseenseveralprofessionalswithinthisperiod,thisparentandgrandparentarenoclosertogettingadiagnosisfortheirchild/grand-daughter.Theywereuncertainwhichwaytoturnnextinseekingsupport,andtherewasadefinitesenseofthemfeelingpowerless,unsupportedandlost.
Interestingly,therewasaFamilyLiaisonOfficerfromCheshireEastCouncil(Janet)aroundthetable,andshe–informally-talkedthisparentandgrandparentthroughseveralstrategiesthatmightbebeneficialinmanagingandsupportingAnnabelleathome.Thisincludedtoolsidentifiedonpages45,46and47.
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‘TheHugeBagofWorries’–abookforchildrenaged4-10yearsold.ThebookiswrittenbyVirginia
Ironside,oneofBritain’sleadingagonyaunts,andhassold140kcopiestodate.
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‘Whattodowhenyouworrytoomuch.’–aninteractiveself-helpbookwrittenbyDawnHuebner(aclinicalpsychologistspecialisinginthetreatmentofchildrenandtheirparents.Thebookisdesignedtoguide6-12yearoldsandtheirparentsthroughthecognitive-behaviouraltechniquesmostoftenusedinthetreatmentofgeneralisedanxiety.Thebookaimstobe“Engaging,encouraging,andeasytofollow.Iteducates,motivates,andempowerschildrentoworktowardschange.”ItincludesanotetoparentsbypsychologistandauthorDawnHuebner,PhD
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• S.T.A.R. – a worksheet that works out the function of a child’s behavior (Setting, Triggers,Actions,Results)–examplebelow:
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OthertoolsthattheFamilyLiaisonOfficermentionedincludedsomedrawingtechniques(cartoontherapy,‘drawavolcano’–basedaroundalleviatingangerandfrustration),codewordsandsoon.
InterviewwithJanet–aFamilyLiaisonOfficeratCheshireEastLocalAuthoritywhoworksalongsideCAMHS:
DuringtheForum,itbecameevidentthatitwouldbevaluabletoengagewiththeFamilyLiaisonOfficerandgainherperspectiveoneffectivesupportforparentsofchildrenandyoungpeoplewithmentalhealthconditions.
Hermainconcernswiththecurrentsysteminclude:
• Lackoflow-levelsupportforchildrenandyoungpeoplewithmentalhealthchallengesandtheirparents.
• Earlierinterventionneeded.• Aneedformainstreamschoolstobeeducatedaroundtheirpivotalroleinsupportingchildren
andyoungpeoplewithmentalhealthchallenges.
TheFamilyLiaisonOfficermadevarioussuggestionsaboutwhatwouldbevaluableinsupportingparents:
“Cygnetcourse”–thisisaparentsupportcourserunbyCAMHSinCreweandMacclesfield.Thereisafour-yearwaitinglist.Whenweaskedherifanonlineofferingwouldhelpinalleviatingthis,herfeelingswerethatface-to-faceinteractionwasvital.Shesaidthat“friendship”and“socialengagement”isareallyimportantfactorforparentsofchildren/youngpeoplewithmentalhealthchallenges,forreasonssuchassomenothavinganyschoolgateinteractionwithotherparentsduetosomechildren/youngpeoplebeingtakentoschoolinataxi.ShedescribedsocialinteractionandgroupssuchastheParentandCarersForumasa“lifeline”.
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AutismConnect-anonlinesocialnetworkforpeoplewithautismandtheirfamilies.Aplaceto‘meetnewpeople,makefriendsandfindsupportwithintheautismcommunity.’TheFamilyLiaisonOfferstatedthiswasaverygoodsupporttool.
CHECS:WespokewiththeFamilyLiaisonOfficeraboutthepressuresaroundcapacitywithinthecurrentservices,andsheoutlinedthatChECS(CheshireEastConsultationServiceforChildrenandtheirFamilies)waslaunchedinApril2013andwassupposedtobeahubforsignpostingchildrenandfamiliestosupportorganisations/services,includingmentalhealthservices.
WeaskedEmmaLeigh(ClinicalProjectsManageratNHSEasternCheshireClinicalCommissioningGroup)abouttheservice,andshehadonlyrecentlybeenmadeawareoftheserviceandstatedthatitis:
“reallypoorlyadvertised…asaprofessionalandaparentIfindthisservicereallyconfusing.AtfirstIunderstoodtheservicetobesomethingthattheschoolscouldcontacttoaskadviceaboutachildoryoungpersoninneed,thenrealiseditwasactuallyforparentstoo.IamnotevensureifGPsareawareofthisservice,orhowthislinkstogetherwithsupporttheyoffer?Ithinkpartofthewiderissueisthathealthandsocialcarearefundamentallyofferingtwoverydifferentthings.”
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TelephoneinterviewwithaSENCOsupportworker:
WealsoconductedatelephoneinterviewwithaSENCOsupportworker.Theyareapersonalconnection,andwantedtosharetheirperspectiveonreferralsintoCAMHS.ShesaidherexperienceindealingwithCAMHS
“hasn’tbeenaverypositiveone.CAMHShavesuchafinitecriteriaforacceptingpatientstheyturnawayreallyseriouscases.Iknowacaseofaprimary-schoolagedchildwhoattemptedsuicideandCAMHSwouldn’ttakethemon.Theyclassedthecaseasa‘CryforHelp’asithappenedinaplacewherehe/shecouldbefound,andthereforesaiditdidn’tmeettheirthreshold.I’vealsoseentwoprimary-schoolagechildrenthreateningtocommitsuicide,yetCAMHSrespondedinthesameway,rejectingthem.Theparentandchildarethenleftwithnowheretoturn.There’ssimplynosupportoutthere.”
TheSENCO’ssentimentsechoakeycomment[alsodetailedearlier]byoneoftheGPs:
“IAPTisbroken.CAMHSdoesn’tevenexist.”
ShewentontosaythatthelackofaccessintoCAMHShasreachedsuchastate,thatsheherself,isextremelyreluctanttoreferintothem,andparentsalsodon’tseethepointintryingtogetareferralanylonger:
“[Parents]can’tbebotheredtoreferasweknowit’sgoingtogetdeclined.”
ShealsostatedthatthereisnowalongwaitinglistintoVisyonalsoasGPsarechoosingtoreferthereratherthanCAMHSandtherearenootherchoices:
“Whenpeopleneedittheservicejustisn'tthere.”
“Parentsareleftwithafeelingofnoonetotalkto,andnosupportfortheirchild/youngperson.”
“Idon’tknowwhattodo,mychildissayingthis.”
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SheechoedsentimentsspokenbyGPs,andherselfexpressedalarm,whenshetalkedofhow
“CAMHSturnthoseinneedaway,andit’suptootherprofessionalservicestopickthemup.”
TheGP’scommentinrelationtothis:
“Iunderstandtheserviceisstretchedbutsoisgeneralpractice.Wedon'tturnpatientsawayjustbecauseweareverybusy.Iunderstandthattheprocesstheyhavetoundertakeistimeconsuming.Maybea10minutefacetoface
triagewiththechildwouldmeettheparentalexpectation.”
TheFamilyLiaisonOfficerfinishedbysayingweneedasystemthat’s‘responsivetoneed.’
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Opportunities&Recommendations
1. ChangethereferralprocessfromGPintoCAMHS
Theexistingprocessisoutlinedonpage20.Belowisourrecommendationaroundtheprocessandtoolsutilized:
• Day1-CYPhasappointmentwithGP• Day1–[email protected](N.Bthisisa
mockexampleemailaddress)• Day1/2-CAMHSclinicalteamreviewtemplatecontent,emailGPwithrequestforadditional
information• Day1-2-GPrepliesviaemailwithadditionalinformation• Day2-CAMHSreceivesamendedtemplatefromGP,reviewscaseandmakesrecommendation
–acceptordeclinereferral
Thisrevisedprocessissmarter,leanerandsavestimeandmoneywhilstensuringreferralsarestructured,moreaccurateanddeliveredinatimelyfashion.
Insummarywehighlyrecommend:
• Implementing a standard template for the GP’s to complete and send to CAMHS – thistemplate can be a combination of tick box questions, free text responses and personalizedrelevant to the service user. It should follow the CAMHS assessment of Risk, Impairment ofFunction and History of Mental Health. It ensures critical information is communicated andsignificantly reduces the risk of referrals being declined as all partieswill be clearer onwhatmakesagoodreferral.
• Alteringtheprocess–movingfrompostallettertoemailcoveringletterandtemplate.ThiswillsavetimefromtheGP’s,CAMHSandincreasethespeedoftheoverallreferralprocessforthechildrenandyoungpeople.
2. Developaframeworkfortheconsistentcommunicationandengagementofsupportavailable–
YouinMind.org
Itwasclearlyidentifiedthroughtheresearchthatmanyparentsofchildren/youngpeoplefeelingmentallyunwellfeelisolatedandunsupportedbyexistingmentalhealthservices.Manyparentsweengagedwithhadreachedastagnantpointwheretheywereunsureofwhattodoorwheretoseekhelp.
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Thereisaclearneedforsupporttotheyoungpeople,parentsandcarersatseveralstagesintheirjourney–pre,duringandposttreatmentandtoensureyoungpeopleTHRIVEanddonotneedtreatmentatall.GP’salsoidentifiedtheinconsistencyaroundsupportmaterialsavailablewithoneGPquotingonpage12“oncethey’reprintedthey’reoutofdate”andnotknowingwheretoturnforinformation.Supportduringcriticaltimescanreducetheriskofworseningtheproblem,ensurethefamilyfeelsupported,haveaccesstoaccurate,timelyinformationandensureallpartiesaresupportedwithawiderangeoftoolsandtips,manynotoftenspecificallymentalhealthconcernsbutareanassociatedproblemsuchasfinancial,relationships,socialandalcoholrelated.YouinMind.orgseekstosupportthoseinneedthroughimprovingaccesstomentalhealthinformation,supportandservicesacrossCheshire.
‘YouinMind.org’
1. Create a central information hub (youinmind.org) with access to all available support –somewhere young people, parents, carers, schools and GP’s can go to access up to date,relevantinformation,adviceandsignposting(phase1of2).
Thereisaclearneedforsupporttotheyoungpeople,parentsandcarersin-betweentheirappointmenttotheGP/referandtheirfirstCAMHSappointment.Supportatthiscriticaltimecanreducetheriskofworseningtheproblem,ensurethefamilyfeelsupported,haveaccesstoaccurate,timelyinformationandensureallpartiesaresupportedwithawiderangeoftoolsandtips,manynotoftenspecificallymentalhealthconcernsbutareanassociatedproblemsuchasfinancial,relationships,socialandalcoholrelated.Thisisaportalofinformation,ledwithcontent,approach,lookandfeelforserviceusersandnon-serviceusers.Theportalpullstogether,interpretsandcollatesthedetailsofserviceproviders,GP’s,contactinformation,existingmarketingcommsmaterialandmessagesfromregionalserviceproviders,makingiteasytounderstand,navigateandpositionedinawaywiththeuserinmind.Itwillhaveasophisticatedsearchfunctiondrivenbyseveralelementsbutwiththeonlineuserastheprimaryfocussotheycan
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searchhowthey’refeeling,wheretheyliveoraskaquestionandthey’reexposedtoblogs,content,expertise,individualsandacommunityofsupport.
2. Develop the information hub into a structured, multi-channel, low-level support andengagementprogrammovingbeyondjustprovidinginformation,tolinkingtopatientcareandserviceproviderdelivery.This isadevelopmentofphase1andwill launch12-18monthsafterphase1referencedabove.
Phase2developmentsTheplatformhasseveraldevelopmentopportunitiestoincludeauserloginarea,todownloadserviceprovidermarketingmaterials,tocreateacommunityofonlineusersandimportantlytosupportcommissioningdecisionsinlinewithstrategicplansastheusers’activitiesonlinecanbeanalysedtounderstandtheirinterests,preferencesandalignwiththemesidentifiedthroughotherresearchorinaJSNA.PersonalisedMarketingCommunicationsforserviceusersalignedtotreatment/supportAcombinationoftoolssuchasonlineandofflinecommunications,face-to-faceandtelephoneoremailcontact,one-to-oneandgroupsessionsupport,couldprovidelow-levelsupport,signpostingtoinformationandoffersupportbefore,ortoremovetheneedforCAMHSappointment.Itcouldincludecontentsuchasmentalhealthadvice,signposting,localinformation,nationalawareness,storiesfromotherserviceusersandtheirfamilies,highlightingkeysupportcalendareventssuchasmentalhealthawarenessweekandsoon.Inthisexample,thecommunicationschannelsareintegraltotheinPersonalised,directcommunicationchannelsalignedtocareandtheNHSDigitalRoadmapcouldinclude:
• Leaflets• Emails• OnlineCounselling–accesstobespokesupport• Onlinetutorials• Advicegiving/informationsharingviaemail• Self-helpbooks• Keyblogstofollowandengagewith• Forums/supportgroups• Charities&3rdsector–affiliatemarketingcommsthroughpartnersofCAMHS• Peertopeereventsandonlinegroups• SMStextmessages• Socialmedia–specifichashtagsrelevanttoregion,audienceandtreatmentanddirectmessages• Invitationstoworkshops
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ThisapproachtoaudienceengagementaroundmentalhealthshouldworkinconjunctionwithawiderstrategicCAMHSpositioningexercisewhichwebelievewillbeaddressedasTHRIVEisimplemented.
Someoftheimmediatebenefitsofyouinmind.org
- Reduce the high dependency on CAMHS as other services increase theircommunicationsandprevalence,potentially reassuringor informing theyoungpersonandnegatingtheneedforCAMHSorfurtherGPintervention
- Directly address the clear need to low-level support and access to information soparents,carersandyoungpeoplestopsaying“Ihavenoonetoturnto”or“IwenttotheGP, got a referral to CAMHS but don’t knowwhat to do now” (quotes fromparents’researchgroups)
- The portal addresses the THRIVE ‘Getting Advice’ quadrant alleviating pressure onservice providers to deal with marketing and communications of their services andinsteadenablingthemtofocusontheircoreskillsetofdelivery,withadedicatedsiteandteamaddressingmarketingcomms.
- Otherservicesbecomemoreaccessible,andthereisanincreaseinuptakeaspotentialserviceusersbecomemoreaware
- Serviceprovidersknowabouteachother,becomeconnectedandcancreateastronger,morerelevantofferingfortheserviceusers/parents/carers
- Ensure the service user and their family are at the heart of the care and remaininformedaboutwhat isavailable,whattheirpathwaycouldbelikeandinformationtosupportontheway
- Save the GP’s time as they can provide one central point of information to CYP, notpointingtheminthedirectionofseveralpeopleandwebsites
- ensuretheGPisconfidentandsecureinthesignpostingandadvicetheyaregiving- Be a process that works in conjunction with 3rd sector support groups, utilizing
informationandtoolsalreadyavailable–sowearenotre-creatingexistingcontentwearemaking the best ofwhat is available and enabling us to identify gaps for contentcreation.
Makingthishappen
ByeachCCGfundingtheirownpresenceontheirportalwillensurethatserviceprovidesacrosstheirregionareengagedandrepresented,thattheCCGhaveaconsistentpresencealignedtoeachotherandinlinewiththementalhealthtransformation.TheCCGcangoontoutilizethesiteasasophisticatedformofanalysistounderstandactivity,researchtoobtainfeedbackanddemandof/engagementwithserviceswhichcouldshapecommissioning.
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AnnualfundingwillensureongoinggrowthanddevelopmentoftheportalintoPhase2,creatingacommunityandclearlyaddressinganeedthattheresearchidentifiesmakingYouinMind.orgakeyresearch,engagementandcommunicationtoolthatbenefitsallaudiences.YouinMind.orgwillbelaunchedinJanuary2017.Furtherrecommendations
1. EducationinschoolsFromtheengagementwithinthisresearchandSTITCHpreviousCYPresearchJanuary–March2016,theroleofschoolsinayoungperson’smentalhealthiswellestablished.WerecommendthattheCCGstrengthentheirrelationshipswithschools(EHSprogramcanhelptodothis)andinformthemaboutthemulti-channel‘ProgramofSupport’approachfromCAMHS.
LukeBeardon(moreinformationonpage42–parentstory)isawell-knownbloggerassociatedwithSheffieldHallamAutismCentre.WesuggestschoolslookforspeakerssuchasLuketoengagewithyoungpeopleinschoolsandbringtolifethebasiccurriculumaroundmentalhealthandeducation.MorerecommendationsconcerningschoolsandmentalhealthcanbefoundintheSTITCHCYPMentalHealthreportJanuary–March2016andcanbeaccessedviaEmmaLeighorcontactingtheSTITCHteamdirectly.
2. MentalHealthroadshowsWerecommendthatNHSEasternCheshireCCGworkinpartnershipwithCWPCAMHStorunaseriesofmentalhealthworkshopsacrosstowncentresintheregionandwithinschools.BytakingCAMHSand3rdsectorsupportpartnersouttotheyoungpersonitenablesthemtoeducatetheaudiencesonthesupportCAMHSandothersoffer,availableinformationandevengetdataoftheyoungpersonandfamiliesforusewithinthe‘ProgramofSupport’referencedabove.
3. ParentHelpline&SMSserviceThereisaneedforadiscreet,parent/carerhelplinelinkedtotheCAMHSserviceandtreatmentwhereparentscanringupforsupportandsignposting.ThisservicecouldbelinkedtotheGPsweb-portalreferencedinpoint2andisanopportunityforCAMHStotakedowndetailsoftheparentsandfamilywhichcouldbeusedwithinthemarketingcommunications.WesuggestparentsarealsoabletotextintoCAMHSforsignpostingandsupportandregistertheirdesireforfurtherinformation.
4. CentralReferralHub:Toworktowardsshorterwaitingtimesandmoreeffectivetreatmentforpatients,andtoalleviateworkloadformentalhealthprofessionalsandGPs,werecommendthatacentralised,holisticapproachto
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patienttreatmentbeconsideredviaacentralreferralhub.ThisisalreadystartingtobeaddressedthroughtheimplementationoftheTHRIVEmodelasCAMHSmoveawayfroma‘tierless’system,whichfacilitatesagreaterfocusontheyoungperson,aswellasutilising3rdsectorsupportgroupssuchasVisyonand‘JustDropIn’.Thishubwouldprovideaholistic,patient-centeredapproachtocare,adviceandtreatment,andwouldassessthepatientviaatriageservicetodeterminethepatient’sneeds.Dependingontheirneeds,thepatientwouldbedirectedtorelevantsupportservicesrangingfromgeneralwellbeingsupportformildercases,throughtoCAMHSandsecondarycarewheremorespecialistsupportwasrequired.ItwouldneedtobedecidedwhowouldruntheHub.ThismodelemulatestheIAPTmodelbeingcommissionedatpresent(July2016)viaNHSEasternCheshireCCGandcouldincludeserviceusersbeingreferredontoawiderrangeofappropriateservicesandNHS-approvedtherapiesincludingthirdsectororganisationssuchasschools,socialservices,sportsorganisations,familysupportandsoon.CheCSCheCS(CheshireEastConsultationServices)isthe‘frontdoor’foraccesstoservices,supportandadviceforChildrenandtheirFamilies,fromEarlyHelpandSupportthroughtoSafeguardingandChildProtectionandbecameoperationalonApril222013.WebelievetheroleofCheCSneedsfurtherexploration–bothitsrole,communicationsandimpactontheyoungpersonandsystemoverall.Asisstands,thereisagenerallowawarenessandunderstandingaroundtheservice,andit’snotclearwhatthelevelofsupportandengagementisthattheyoffertoayoungpersonandtheirfamily.
ClosingStatementThisreportwasmodifiedatupdatedattherequestofthereportrequesteron27/7/16asalternative,morerelevant,appropriaterecommendationsbecomeavailable.OurinsightshowedthatthecurrentCAMHSserviceprovisionhasflaws,manyofwhicharegoingtobeaddressedthroughTHRIVEimplementation,butthefundamentalunderstandingandprocessofmanagingongoingcommunicationswiththeaudiencestosupportlow-levelsupportstillremains.Basedontheinsightgatheredfromengagingwiththevariousaudiences,thereareanumberofimprovementsthatneedtobemadewithsomeurgencywiththeimplementationofYouInMind.orgacrosstheregionsbeingcritical.
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Appendix:
AppendixA. DeclinedCAMHSlettertoparent/familyofyoungperson
OurRef:JE/JL
Date:
Lettertoparents
AtCAMHSweaimtosupportthosechildrenandyoungpeoplemostinneedwiththerightlevelofmentalhealthsupport,careandtreatment.
WhenwereceiveareferralintoourservicefromaGP,schooloralternativesupportserviceweassessthatreferralagainst3keycriteria:
1. Isthechildoryoungpersondisplayingsymptomsofamentalhealthdisorder?2. Isthementalhealthdisorderandsymptomshavinganeffectonthedaytodaylifeoftheyoung
person?3. Istheyoungpersonposingarisktothemselvesorothers?
Iamwritingtoyoubecauseunfortunatelywehavenotbeenabletoacceptthereferralof<insertname>intoourservice.IamunabletoprovideyouwithapersonalisedreportwithinthisletterhoweverourclinicalteamhavereviewedtheinformationprovidedbythereferreranddeemedspecifictreatmentfromCAMHStonotbethemostappropriateaction.
Theright,localsupportforyou
Weworkwitharangeofsupportcentresandcharitiesacrosstheregionwhocanofferservicessuitablefor<insertname>.Allofthesesupportservices,informationandofferingshavebeendesignedinconjunctionwithcliniciansandwithchildrenandyoungpeople’smentalhealthinmind.
Simplyvisityouinmind.orgtofindallofthesupportavailableandcontactyourlocalprovider.
SAMPLEDRAFT
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Gettingintouch
Ifyoufeelwehaveinappropriatelynotacceptedthereferral,youhavefurtherinformationconcerningthereferral,orarelookingforfurtherinformationpleasecontactoneofthePrimaryMentalHealthWorkerson01625661241.
Yourssincerely
JaneEdwards
PrimaryMentalHealthWorker/TeamManager
Copyto:
GP
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AppendixB. DeclinedCAMHSlettertoGP
OurRef:JE/JL
Date:
ReferrerName&Address
DearColleague
Re:
YourecentlysentareferralintoCAMHSconcerningthementalhealthandwellbeingof<insertname>.
Whenwereceiveareferralintoourservice,weassessthatreferralagainst3keycriteria:
1. Isthechildoryoungpersondisplayingsymptomsofamentalhealthdisorder?2. Isthementalhealthdisorderandsymptomshavinganeffectonthedaytodaylifeoftheyoung
person?3. Istheyoungpersonposingarisktothemselvesorothers?
Unfortunately,wenotbeenabletoacceptyourreferralrequestonthisoccasion.IamunabletoprovideyouwithapersonalisedreportwithinthisletterhoweverourclinicalteamhavereviewedtheinformationprovidedanddeemedspecifictreatmentfromCAMHStonotbethemostappropriateaction.
Increasingdemand
Weserveapopulationofaround200,000acrosstheCWPregionalfootprint.IncommonwiththemajorityofCAMHSservicesaroundthecountryweoperatethe“ChoiceandPartnership”system(capa.co.uk)toensuremaximumefficiencyandthisenablesustomanageonenewcaseperwholetimeequivalentperweek.
Forourteamthismeanswehaveanannualcapacityofaround386cases.Wereceiveover600referralsperyearandthisrateisrising,thisyearitislikelytoexceedover700referrals
SAMPLEDRAFT
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Theright,localsupport
Wherewearenotabletoofferanassessmentwesuggestalternativestotheyoungpersonandtheirfamilies.Manyyoungpeoplewillbenefitfromlocal,3rdsectorsupportserviceswhoweworkinpartnershipwithtoensuretherightsupportisofferedfortheyoungperson.
Allofthesesupportservices,informationandofferingshavebeendesignedinconjunctionwithcliniciansandwithchildrenandyoungpeople’smentalhealthinmindandtheirdetailsareavailableonyouinmind.org.
Transformation
OurcommissioningcolleaguesinEasternCheshireCCGareawareofthedemandsonourserviceandareworkingwithustoaddressthisissuebutthisisatanearlystage.
IfyouhavethoughtsonthisorthinkweshoulduseourcurrentcapacityinadifferentwayyoucangetintouchwithEmmaLeigh–EasternCheshireClinicalCommissioningGrouponemailingemmaleigh@nhs.netorandDrTaniaStanway–CWPClinicalDirectorforCAMHSEaston<insertemail>
Ifyoufeelwehaveinappropriatelynotacceptedthereferralyoumadeandyouhaveadditionalinformation,pleasecontactusandasktospeakwiththeDutyProfessional.
Yourssincerely
JaneEdwards
PrimaryMentalHealthWorker/TeamManager
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AppendixC. ParentStories
ParentStoryNo.3:Mumofa13yroldgirlOnemumwespoketohadtakenherdaughterintotheGPafterconcernsaboutherself-harming.Shehadpreviouslyengagedwiththeschoolbutsaidthattheydidn’tofferspecificsupportandinsteadrecommendedshevisitedtheGP.
TheGPappointmenthappenedand8weekslateraCAMHSappointmentwasmade(atthepointofwritingthistheappointmenthadnotyethappened).
ThemumcomplainedtousthattheGPdidnothingotherthanmakethereferral,noothersupportwasofferedandshe“didn’tknowwhattolookforonline,Ifeeluseless”.
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ParentStoryNo.4:Childname–Martiewhoisnearly15.Hewasdiagnosedapprox.3yearsagoOneofhismaincharacteristicsisthathedoesn’tcommunicatethroughspeaking.
Nursery PrimarySchool PrimarySchool HighSchoolWhenMartiewasatnurseryhismumandthenurseryhighlighted
thathewasn’tcommunicatingaswell
asheshouldhavebeenatthatage.
HewenttoamainstreamSchoolbutwasputintoaMLD
(MildLearningDifficulties)Unitwithin
theschool
Atthispointtherewasaresourceprovisionatschoolwhosenthimtoaschoolwithspecial
learningneeds.
Martieisinmainstreamschoolreceivingspecialcare
Thisisthepointatwhichthemotherfeltiswhereitwentwrongasheshouldhavegonetoadifferentschool,butwasn’tdiagnosed
atthispoint.Theyshouldhewasmuteanddidn’twant
tospeak.
Thisiswherehewasdiagnosed,aroundthe
ageof12
Hewasdiagnosedthroughthepaediatricianandthefamilyweregivenafamilysupportofficerwhohelpedthemthroughthediagnosis.Howeverthatsupportgotpulledawayastheladytheyhadwentoffsickandthenwasneverreplaced.Thisleftthemfeelingveryisolated.WithregardstoMartie’smum,shefeltverystronglythatitisheragainsttheprofessionals,andthatsomeofthehealthprofessionalsprioritisemoreseverecasesthanthoseofMartie.Theladyexplainedabouttheimpactthishashadonherhusbandandmarriage.Herhusbanddidn’tdealwiththisverywellandthenstartedtodomesticallyabuseher.TheParentsandCarersForumhasbeeninvaluabletoher.TheyputherintouchwithCWA(CreweWomen’sAid),andisnowinregularcontactwithaFamilySupportOfficerandSocialServicesduetothelevelofdomesticabusethatishappening.
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AlthoughshediduseCAMHS,shefelttheyneedtounderstandthatparentsstillworryaboutmentalhealth,andfeltthatnoonereallyacknowledgedorsupportedher.
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ParentStoryNo.5Andrewis5½now.HewasdiagnosedwithASDlastyear(August2015).DiagnosiswasdonethroughtheChildDevelopmentCentre(AndrewhadgonethroughChildDevelopmentCentreasatthattimehewasn’toldenoughforCAHMS).AtwhichpointmumcontactedChECSforreferral.SheisstillwaitingandhasthereforenotusedCAMHSatthispoint.ASpeechTherapistgotinvolvedtosupportwiththediagnosis,butwasatthestagewheretheyweregoingtodischargehimasacase,asnoprogresswasbeingmade.ThemotherthenbeggedandaskedtheSpeechTherapisttotryadifferentapproach,atwhichpointtheyhadabreakthroughandhestartedtocommunicatewiththem.Thisenabledthemtogettoadiagnosis.Mumisatapointwherenowshehasthediagnosis,butshedoesn’tknowhowtotakeittothenextstagetostarttogetsupport.Shedoesn’tknowhowtoreferhimtoCAHMS,andshehastriedwithChECSseveraltimestonoavail.Mumfeltverymuchattheendofhertether.Shefeltveryisolatedandalone.Shehadbeensoaffectedbythestressofthesituationthatshehadsufferedanervousbreakdownandwassubmittedtoamentalhospitalherself.
• “Allthatpushingandfightingshouldneverhavehadtohappen.”
• “Ifwedon’tsupportourchildrennowtheywillturnintoadultswithtoomanylearningdifficulties.”
Andrewattendsasmallvillageschoolwithonly46childreninitsothereislittlescopeforanyone-on-onesupportforAndrew.Shehadexpectedtheschoolwouldsupportbutfeelsthattheydon’tunderstandtheproblemandthereforehowtodealwiththedifficultiesandchallenges.Shealsofeltthatthereisnoinformationavailableontheotherservicesavailablee.g.taxcredits,benefitsetc.Theyofferparentingcourses,buttheyareoftenonlyfor1parent.Heridealsupport:aswellassupportforAndrew,ideallysupportwouldbeofferedtothefamilye.g.relationshipcounselling,asthisladyhadalsoexperienceditaffectedherfamilylife.
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GeneralComments/ObservationsRecurrentissueoftheschoolsneedingtogetinvolvedintermsofsupportinggettingadiagnosis.Currentlytheschoolsareoftencontradictinganyhealthprofessionaldiagnosisduetothemnotseeingthebehaviourinschooli.e.incaseswherethechildisonlyprovingchallengingathome.Equallyallthewomenthatwespoketofeltthataswellaspracticalsupportinhowtohandleordealwiththeirchildren,theyalsowantedemotionalsupportforthemandtheirpartner,asthestrainofhavingachildwiththeseconditionsoftendirectlyimpactedtheirmarriagesortheirhomelife.Again,thewomenwespoketofeltthattheyweren’tsupportedgenerally,byanyhealthprofessionals,throughouttheprocess.Nordidtheyfeelinformedaboutwhattodoorwheretoturn.