exploring referrals into camhs, engaging with gps & …€¦ · • engage with camhs and...

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CYPMentalHealthExploringreferralsintoCAMHS,engagingwithGPs&understandingParent/Carerneeds

NHSEasternCheshire

ClinicalCommissioningGroup

Revised27July2016

Reportpreparedby:STITCHLtd.

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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

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.

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

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

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).

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.

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

Lackofsupportoptions:

OneGPoutlinedalackofsupportoutsideofCAMHSforunder16yrolds:

“Ireallystrugglewithavailabilityofsupportserviceslocallyforchildren.WhenCAMHSfailsorisinappropriate,wefeelstuck.”

Fromourexperiencethisislikelyduetobetolackofknowledgeandawarenessofotherservicesandtheperceptionthat“onceit’sprintedit’soutofdate”whenreferringtoprintedsupportmaterialsfortheyoungperson.

Keyobservation–inconsistentmaterials,outofdateresources(BigWhiteWall)beingreferencedandaclearneedtocreatesomethinguptodate,relevantandeasilymodifiedtoavoidbeing“outofdate”.

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.

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.”

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.”

“Someformofcounselingparticularlyforolderteenagegroups.Morespecificleafletswithresourcesforunder16sratherthan‘generic’onewithJustDropIn

asonlyoneforthisage.”

“Onlineresourcewithprintablematerialtohandtopatients.”

Keyobservation–existinghighdependencyonprintedmaterialswithinconsistentawarenessofwhatisavailablebetweenGP’sandconsensusofnotenoughresourcesavailable.

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.

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.

AlmosthalfofGPrespondentsweren’tawareoftheaveragewaitingtimesforCAMHStreatment,andafurther24%guessedincorrectly(lessthan16weeks).AthirdofGPsknewthattheaveragewaitingtimeis16weeks+.

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

monthsifnot.Frustratingasitleadstopatient'snotrespondingtooastheyfeelissueshavechangedbythetimetheyarecontacted.”

“Patientsoftenexpressupsetatlongwaitingtimesaddingtothefrustrationin

thefamilyunit.”

“Notreallyterriblyresponsive.Hardtoselltopatientstoengage,especiallyinwhatcanbequiteanuncomfortableproblemforthem-Youmayonlyget1

chancetohelpthem...”

SomecommentswerereceivedaroundwhatGPswouldliketosee:

“Toolong.Needadvicelineforparents.”

“IfeelveryfewpeopleareactuallyseenbyCAMHSandmostaredowngraded.Iwouldliketoseeanurgentapproachtosomereferralsifneeded.”

Itisclearfromtheresponses,thatthereisclearcommunicationfromCAMHStotheGPwhenareferralisdeclinedwithsevenintenGPsstatingthat“Yes,[they’re]always”madeaware.

Therewereafewsuggestionsreceivedhoweveraroundmakingtheprocessbetter:

“Ithinkwealwaysgetaletterbutmoreinfoaboutsuggestedalternativesupportwouldbeuseful.”

“Pleasecanletterdetailreasonsforreferralbeingdeclinedwithsuggestionsfor

alternatives?”

“Iunderstandtheserviceisstretchedbutsoisgeneralpractice.Wedon'tturnpatientsawayjustbecauseweareverybusy.Iunderstandthattheprocesstheyhavetoundertakeistimeconsuming.Maybea10-minutefacetofacetriagewiththechildwouldmeetthe

parentalexpectation.”

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.”

“WhatarethebiggestchallengesorconcernsyouhavewhenitcomestoCAMHS?(Pleaseansweropenlyandhonestlyandthinkaboutpatientcare,processes,availableresources,yourknowledgeofCAMHSandanyotherareasyouwishtocommenton).”

Thisquestionhighlightedseveralthemesthathadbeentoucheduponinthepreviousquestionsandresponses.

Therewasaprevalentthemeofinsufficientresource:

“Therearenotenoughresourcestosupporttheincreasingnumberofyoungpeoplewithmentalhealthproblems.”

“Perceivedhugelackofresource.”

“Overalllackoftimelyresources.”

“Capacityforgrowingdemandandwaittimes.Increaseineatingdisordersand

timefromCAMHSreferraltoeatingdisordersclinictotreatment.”

“Suchalimitedresourceandmanyparents/childrenneedingsomeformofsupport.”

“Slowresponse,notalwaysadequate,limitedcommunication.”

“Lackofaccess.”

“Overloaded”

“Serviceisstretched.”

“Limitedresource.Endlesspoolofteenageangstandstrugglingwithidentity

evenwhensocialsupportisaveragetogood.”

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.”

“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.”

Othercommentsbelowindirectlyhighlightpotentialareasforimprovements:

“Alsoratherthanrejectreferrals,itwouldbemoreusefulifCAMHSactuallyredirectedthereferraltothemoreappropriateservicedirectlye.g.Visyon.”

“Lackofafter5pmsupportavailablelocallytoo.”

“Lackofdirectcontactwithteammembers.”

Thevalueofturningtheseideasintorecommendationswouldneedtobeassessed,astheseweresinglecommentsfromindividualGPs,soaren’tnecessarilyaviewrepresentativeofanumberofGPs,andsomaynotrepresentanygreatneed.

“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.”

“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.”

“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.”

“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.”

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.”

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.”

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.

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.

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.

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.

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.

‘TheHugeBagofWorries’–abookforchildrenaged4-10yearsold.ThebookiswrittenbyVirginia

Ironside,oneofBritain’sleadingagonyaunts,andhassold140kcopiestodate.

‘Whattodowhenyouworrytoomuch.’–aninteractiveself-helpbookwrittenbyDawnHuebner(aclinicalpsychologistspecialisinginthetreatmentofchildrenandtheirparents.Thebookisdesignedtoguide6-12yearoldsandtheirparentsthroughthecognitive-behaviouraltechniquesmostoftenusedinthetreatmentofgeneralisedanxiety.Thebookaimstobe“Engaging,encouraging,andeasytofollow.Iteducates,motivates,andempowerschildrentoworktowardschange.”ItincludesanotetoparentsbypsychologistandauthorDawnHuebner,PhD

• S.T.A.R. – a worksheet that works out the function of a child’s behavior (Setting, Triggers,Actions,Results)–examplebelow:

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”.

AutismConnect-anonlinesocialnetworkforpeoplewithautismandtheirfamilies.Aplaceto‘meetnewpeople,makefriendsandfindsupportwithintheautismcommunity.’TheFamilyLiaisonOfferstatedthiswasaverygoodsupporttool.

CHECS:WespokewiththeFamilyLiaisonOfficeraboutthepressuresaroundcapacitywithinthecurrentservices,andsheoutlinedthatChECS(CheshireEastConsultationServiceforChildrenandtheirFamilies)waslaunchedinApril2013andwassupposedtobeahubforsignpostingchildrenandfamiliestosupportorganisations/services,includingmentalhealthservices.

WeaskedEmmaLeigh(ClinicalProjectsManageratNHSEasternCheshireClinicalCommissioningGroup)abouttheservice,andshehadonlyrecentlybeenmadeawareoftheserviceandstatedthatitis:

“reallypoorlyadvertised…asaprofessionalandaparentIfindthisservicereallyconfusing.AtfirstIunderstoodtheservicetobesomethingthattheschoolscouldcontacttoaskadviceaboutachildoryoungpersoninneed,thenrealiseditwasactuallyforparentstoo.IamnotevensureifGPsareawareofthisservice,orhowthislinkstogetherwithsupporttheyoffer?Ithinkpartofthewiderissueisthathealthandsocialcarearefundamentallyofferingtwoverydifferentthings.”

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.”

SheechoedsentimentsspokenbyGPs,andherselfexpressedalarm,whenshetalkedofhow

“CAMHSturnthoseinneedaway,andit’suptootherprofessionalservicestopickthemup.”

TheGP’scommentinrelationtothis:

“Iunderstandtheserviceisstretchedbutsoisgeneralpractice.Wedon'tturnpatientsawayjustbecauseweareverybusy.Iunderstandthattheprocesstheyhavetoundertakeistimeconsuming.Maybea10minutefacetoface

triagewiththechildwouldmeettheparentalexpectation.”

TheFamilyLiaisonOfficerfinishedbysayingweneedasystemthat’s‘responsivetoneed.’

Opportunities&Recommendations

1. ChangethereferralprocessfromGPintoCAMHS

Theexistingprocessisoutlinedonpage20.Belowisourrecommendationaroundtheprocessandtoolsutilized:

• Day1-CYPhasappointmentwithGP• Day1–GPcompletesReferralTemplateandemailstocreweCAMHS@cwp.nhs.net(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.

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

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

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.

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

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.

Appendix:

AppendixA. DeclinedCAMHSlettertoparent/familyofyoungperson

OurRef:JE/JL

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

Gettingintouch

Ifyoufeelwehaveinappropriatelynotacceptedthereferral,youhavefurtherinformationconcerningthereferral,orarelookingforfurtherinformationpleasecontactoneofthePrimaryMentalHealthWorkerson01625661241.

Yourssincerely

JaneEdwards

PrimaryMentalHealthWorker/TeamManager

Copyto:

AppendixB. DeclinedCAMHSlettertoGP

OurRef:JE/JL

ReferrerName&Address

DearColleague

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

Theright,localsupport

Wherewearenotabletoofferanassessmentwesuggestalternativestotheyoungpersonandtheirfamilies.Manyyoungpeoplewillbenefitfromlocal,3rdsectorsupportserviceswhoweworkinpartnershipwithtoensuretherightsupportisofferedfortheyoungperson.

Allofthesesupportservices,informationandofferingshavebeendesignedinconjunctionwithcliniciansandwithchildrenandyoungpeople’smentalhealthinmindandtheirdetailsareavailableonyouinmind.org.

Transformation

OurcommissioningcolleaguesinEasternCheshireCCGareawareofthedemandsonourserviceandareworkingwithustoaddressthisissuebutthisisatanearlystage.

IfyouhavethoughtsonthisorthinkweshoulduseourcurrentcapacityinadifferentwayyoucangetintouchwithEmmaLeigh–EasternCheshireClinicalCommissioningGrouponemailingemmaleigh@nhs.netorandDrTaniaStanway–CWPClinicalDirectorforCAMHSEaston<insertemail>

Ifyoufeelwehaveinappropriatelynotacceptedthereferralyoumadeandyouhaveadditionalinformation,pleasecontactusandasktospeakwiththeDutyProfessional.

Yourssincerely

JaneEdwards

PrimaryMentalHealthWorker/TeamManager

AppendixC. ParentStories

ParentStoryNo.3:Mumofa13yroldgirlOnemumwespoketohadtakenherdaughterintotheGPafterconcernsaboutherself-harming.Shehadpreviouslyengagedwiththeschoolbutsaidthattheydidn’tofferspecificsupportandinsteadrecommendedshevisitedtheGP.

TheGPappointmenthappenedand8weekslateraCAMHSappointmentwasmade(atthepointofwritingthistheappointmenthadnotyethappened).

ThemumcomplainedtousthattheGPdidnothingotherthanmakethereferral,noothersupportwasofferedandshe“didn’tknowwhattolookforonline,Ifeeluseless”.

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.

AlthoughshediduseCAMHS,shefelttheyneedtounderstandthatparentsstillworryaboutmentalhealth,andfeltthatnoonereallyacknowledgedorsupportedher.

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.

GeneralComments/ObservationsRecurrentissueoftheschoolsneedingtogetinvolvedintermsofsupportinggettingadiagnosis.Currentlytheschoolsareoftencontradictinganyhealthprofessionaldiagnosisduetothemnotseeingthebehaviourinschooli.e.incaseswherethechildisonlyprovingchallengingathome.Equallyallthewomenthatwespoketofeltthataswellaspracticalsupportinhowtohandleordealwiththeirchildren,theyalsowantedemotionalsupportforthemandtheirpartner,asthestrainofhavingachildwiththeseconditionsoftendirectlyimpactedtheirmarriagesortheirhomelife.Again,thewomenwespoketofeltthattheyweren’tsupportedgenerally,byanyhealthprofessionals,throughouttheprocess.Nordidtheyfeelinformedaboutwhattodoorwheretoturn.

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