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Rethink Mental Illness. Lost Generation 1
Lost Generation
Why young people with psychosis are being left behind, and what needs to change.
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2 Rethink Mental Illness. Lost Generation
Who we are
Rethink Mental Illnessisacharitythatbelievesabetterlifeispossibleforpeopleaffectedbymentalillness.Formorethan40yearswehavebroughtpeopletogethertosupporteachother.Werunservicesandsupportgroupsthatchangepeople’slivesandwechallengeattitudesaboutmentalillness.
The IRIS Network isagroupofmentalhealthexpertsandprofessionalswhosupportthepromotionofEarlyInterventioninPsychosis(EIP).FirstformedtosupporttheNationalEarlyInterventionProgramme(2004-2010),thisnetworkbringstogetherelectedEarlyInterventionregionalleadstoshareissuesandsolutions.
Contents
Summary 1
Foreword 2
Psychosis and young people 3
Facts and stats about Early Intervention in Psychosis services 4
Why Early Intervention in Psychosis is so important 6
Tackling inequality for mental health 9
Early intervention under threat 10
Recommendations 14
Call to Action 15
Protecting young people: what politicians need to do now 16
References 17
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Rethink Mental Illness. Lost Generation 1
Summary
EarlyInterventioninPsychosis(EIP)serviceshelpyoungpeopleaged14-35torecoverfromafirstepisodeofpsychosis,andtogainagoodqualityoflife.Theysupportmorethan10,000youngpeopleeachyear.
EIPcaresignificantlyimprovesayoungperson’sprospectsofrecoveringfrompsychosis.Italsoreducesthelikelihoodthattheywillrelapse,orbedetainedundertheMentalHealthAct,potentiallysavingtheNHS£44millioneachyearthroughreduceduseofhospitalbeds.1Earlyinterventionalsoreducestheriskofayoungpersontakingtheirownlife,fromupto15%to1%.2
However,manyEIPservicesarestrugglingtomaintainhighlevelsofcare,andarefacinganuncertainfuture,becauseofcutstofunding.Whereservicesdoexist,manyyoungpeoplearefacingunacceptabledelaysinaccessingcare.Thisseriouslyaffectstheirchancesofrecovery,andincreasesthelikelihoodofthemdevelopingalifelongillness.
Asaresult,weareatriskoflosingagenerationofyoungpeoplewhoserecoveryfrommentalillnessisbeingjeopardised–tensofthousandsofyoungpeoplewho,withtherightsupport,mightotherwisehavegoodqualityoflifeandplayameaningfulroleinsociety.
Thisreportpresentsnewevidencefromthefrontlineabouttheextentofcutstoresourcingandbudgets,andthenegativeimpactonEIPservicesandtheyoungpeopletheysupport.
What we found:
• 50%ofEIPservicessaytheirbudgethasdecreasedinthepastyear,somebyasmuchas20%.
• 58%ofEIPserviceshaveloststaffoverthelast12months.
• 53%saythequalityoftheirservicehasdecreasedinthepastyear.
• ManyyoungpeoplefaceunacceptabledelaysinaccessingEIPservices,greatlyreducingtheirchancesofrecovery.
What we recommend:
• YoungpeopleexperiencingpsychosisneedguaranteedaccesstoEIPsupport.TheGovernmentmustintroduceamaximumwaitingtimeof28daysforaccessingEIPservicesfromthepointofreferral.
• NHSEnglandmustmakeprovisionofEIPservicesakeypriorityforcommissioners.Toachievethis,itshoulddesignCQUINs3andotherincentivestoensurelocalcommissionersrewardgoodqualityEIPservices.
• ClinicalcommissioninggroupsmustensurethattheycommissionthefullEIPmodel,4
includingspecialistemploymentandphysicalhealthcaresupport.
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2 Rethink Mental Illness. Lost Generation
Foreword
Itisnearly13yearssinceEarlyInterventioninPsychosis(EIP)serviceswerewidelyintroducedacrosstheUK.InthattimeEIPhasbecomeestablishedasoneofthemosteffective,popularandinnovativeservicemodelsinmentalhealth.
FewservicescanmatchEIPforclinicalandeconomicoutcomes.Thereisawealthofevidencewhichshowsthatearlyinterventionsignificantlyimprovespeople’sprospectsofrecovery,andreducesthelikelihoodofthemrelapsingortakingtheirownlife.
EarlyinterventionalsooffersvaluablelongtermsavingstotheNHSbyreducingthedependenceonothermentalhealthservices.PeoplewhohaveEIPsupportaremorethan20%lesslikelytobelegallydetainedinhospitalundertheMentalHealthActinthefirsttwomonthsoftheirillness.5
Buttherealityisthatwithoutadequatefunding,EIPservicescannotcontinuetoofferthewide-rangingsupportforyoungpeoplethattheyaspireto.ItisthereforedeeplyworryingthatmanyEIPteamssaytheyarestrugglingtomaintainhighstandardsofcareinthefaceofsignificantcutstoresources.
InthisnewsurveyofEIPservicesinEngland,carriedoutbytheIRISNetworkandRethinkMentalIllness,50%ofservicessaidtheirbudgethasbeencutinthepastyear,sometimesbyasmuchas20%.Morethanhalfsaidthatthequalityoftheircarehasdecreasedinlinewithcutstofunding.
EIPservicesarealsolosingstaff,andhavingtoreducethenumberoftreatmentsandsupporttheycanofferpeople.Evenworse,someEIPservicesarebeingdisbandedentirelyorabsorbedintocommunitymentalhealthteams.
Theresultisthataftermorethanadecadeofprogressandsuccess,EIPcareiseffectivelydisappearinginsomeareasofthecountry.
Andwhilesomeservicesaremanagingtomaintainstrongoutcomesdespitereducedbudgets,theoverallpictureisoneofprofoundconcernanduncertaintyaboutthefutureforpeopleexperiencingpsychosis.EIPservicesareatatippingpoint,andfurthercutswillseriouslythreatentheircapacitytosupportsomeofthemostvulnerableyoungpeopleinoursociety.Weareatriskoflosingageneration.
TheGovernmenthasmadeacommitmenttoputmentalhealthonaparwithphysicalhealthintheNHS,butthatisfarfromarealityasthingsstand.EnsuringthatEIPserviceshavethefundingtheyneedwouldbeoneobvioussteptowardsachievingthat.
TheGovernment,theNHSandcommissionersmustmakeEIPservicesapriorityatanationalandlocallevel.Wearecallingonthemtoactnow,orriskwritingoffthefuturewellbeingoftensofthousandsofyoungpeopleacrossthecountry.
Professor Max BirchwoodCo-founder,IRISNetworkProfessorofYouthMentalHealth,UniversityofWarwick
“ After more than a decade of progress and success, EIP care is effectively disappearing in some areas of the country”
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Rethink Mental Illness. Lost Generation 3
Psychosis and young people
Psychosisisamedicaltermusedtodescribehearingorseeingthingsthatarenotthere,orholdingdelusionalbeliefs.Commonexamplesincludehearingvoicesorbelievingthatpeoplearetryingtodoyouharm.Itcanbeexperiencedasaone-offepisode,butifleftuntreatedcanleadtolongtermillnessanddisability.
Around1in100peoplewilldevelopafullpsychoticepisodeintheirlifetime.Thevastmajority(8outof10)willexperiencetheirfirstepisodebetweentheagesof15and30.6
Psychosiscanhaveanextremelydamagingimpactonayoungperson’swellbeingandqualityoflife.Itcanaffecttheirrelationshipswithfriendsandfamily,andtheirabilitytoengageineducation,trainingandemployment.Italsomakesitverydifficulttomanageeverydaytasks,likepayingbillsorrent.
Thisleavesyoungpeoplevulnerabletodevelopingaseriousmentalhealthcrisis,beingdetainedinhospitalundertheMentalHealthAct,orgettingcaughtupinthecriminaljusticesystem.
Earlyinterventionmakesamassivedifferenceinhelpingyoungpeoplerecoverfromafirstepisodeofpsychosis.WhensomeonereceivesEarlyInterventionsupportwithintwomonths,theirprospectsofrecoveryaresignificantlyimproved,butadelayoflongerthansixmonthsgreatlyreducestheirchances.7
Similarly,whenayoungpersonreceivesEarlyInterventionsupportinthefirst14monthsoftheirillness,theyaremuchmorelikelytomakeafulllongtermrecovery.8
Rethink Mental Illness. Lost Generation 3
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4 Rethink Mental Illness. Lost Generation
FACTS AND STATS ABOUT EIP SERVICES 50% OF EIP SERVICEShave been cut in the past year
35% OF PEOPLE
MORE THAN 10,000young people get EIP care each year
12% OF PEOPLE compared to
under EIP care are in employment
in standard mental health care
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Rethink Mental Illness. Lost Generation 5
FACTS AND STATS ABOUT EIP SERVICES
£44 MILLION EACH YEAR
FROM 44%
If everyone who was eligible received early intervention, it would save the NHS
EIP support reduces the probability of someone being ‘sectioned’
EIP support reduces the risk of a young person taking their own life
in the first two months of psychosis
FROM UP TO 15% TO 1%
TO 23%
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6 Rethink Mental Illness. Lost Generation
Why Early Intervention in Psychosis is so important
EarlyInterventioninPsychosis(EIP)teamsarethebestmodelforofferingearlyinterventiontoyoungpeoplewithpsychosis.Theytakeaholisticapproachtosupportingpeopleagedbetween14and35torecoverfromafirstepisodeofpsychosis.Thatincludesofferingsupportfromawiderangeofhealthprofessionals,includingpsychiatrists,psychologists,communitymentalhealthnurses,socialworkersandsupportworkers.9Thisgivesyoungpeopleabetterchanceofexperiencingagoodqualityoflife.
6 Rethink Mental Illness. Lost Generation
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Rethink Mental Illness. Lost Generation 7
Interventionsaremosteffectivewhenprovidedbyaspecialistteam.Theyoftenincludefamilytherapy,supportwithmaintainingemploymentandeducation,adviceonmanagingphysicalhealthcareandhelpwithdevelopingsupportnetworkswithfamilyandfriends.PeoplenormallyreceiveEIPcareforaminimumofthreeyears,andamaximumoffiveyears.
Evidence shows that EIP services help people recover and offer the NHS significant savings, in the following ways:
Reducing demand on other services
PeoplewhohaveEIPsupportarelesslikelytoneedothermentalhealthservices,suchasexpensivehospitalcare,whichresultsinsignificantsavingsfortheNHS.ItalsoreducestheprobabilityofsomeonebeingdetainedinhospitalundertheMentalHealthActfrom44%to23%inthefirsttwomonthsofpsychosis.14NHSEnglandhasacknowledgedthatcutstoEarlyInterventionservicesareincreasingdemandforbedsonmentalhealthwardsforyoungpeople.15
Byreducingdependenceonhospitalbeds,EIPcaresavestheNHSanestimated£5,536perpersoninthefirstyearofpsychosis,and£15,862duringthefirstthreeyears.16Ifearlyinterventionwasavailabletoeveryonewhocouldbenefitfromit,theNHSwouldsave£44millioneachyearthroughreduceduseofhospitalbeds.17
Better physical health
Youngpeoplebeingtreatedforpsychosisarevulnerabletodevelopingsideeffectsfromantipsychoticmedication,includingrapidweightgainandchangestometabolism.Overtime,thesecanleadtoconditionslikediabetes,heartdiseaseandcancer,whichputsyoungpeopleatsignificantriskofdying15-20yearsyoungerthanthegeneralpopulation.12
EIPteamsofferyoungpeoplesupportwithmanagingtheirphysicalhealthwhichisrarelyavailabletothemfromtheirGPorothermentalhealthservices.ThisisrecognisedintheinternationalHealthyActiveLives(HeAL)consensusstatement.13
Reduced suicide and homicide rates
EIPsupportreducestheriskofayoungpersonwithpsychosistakingtheirownlife,fromupto15%(theriskofsuicideforpeoplewithpsychosis),tojust1%.10
Theriskofsomeonewithuntreatedpsychosiscommittinghomicideisverysmall(around0.17%).However,earlyinterventionreducesthatto0.011%.11
Improved employment and education prospects
TheemploymentrateforyoungpeopleunderEIPcareis35%,comparedtojust12%forpeopleinstandardmentalhealthcare.18
Thisleadstoincreasedannualearningsof£4,299perperson,comparedtopeopleusingothermentalhealthservices.19Theestimatedcostoflostemploymentisaround£2,000lowerforeachpersonunderEIPcareperyear.20
Better experiences of care
YoungpeopleusingEIPservices21saythattheyhavemorepositiveexperiencesofEIPcarethanofothermentalhealthservices.YoungpeoplesaidEIPsupporthelpedthemgainapositivesenseofself-identity,anddevelopstrongfamilyrelationships(whichinturnmeansfamilymembersaremoreengagedinthecarethatayoungpersonreceives).
TheyalsowelcomedtheflexibilityofEIPsupport,especiallyinrelationtothelengthoftimethatitisavailabletothem.
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8 Rethink Mental Illness. Lost Generation
Evidence from the front line
“We offer people support that they would not otherwise get”
“I felt valued as a person”
Iwasalsoencouragedtovolunteerinthecaféinmylocalmentalhealthcentre.Sincethen,I’vealsojoinedtheboardoftrusteesatthecentre,whichhasgivenmealotofprideandself-esteem.
Withoutearlyintervention,Iwouldhavebecomealotmoreisolatedandreclusive,andwouldhavehadlessinsightintomycondition.SoonIamgoingtobedischargedcompletelyfrommentalhealthservices,whichshowshowmuchofadifferenceearlyinterventionmadeforme.”
Paul* is an EIP service lead. He and his colleagues have fought hard to protect his service from cuts by demonstrating the strength of their outcomes.
“Toprotectourservicefromallthefinancialuncertaintieswe’refacing,we’rereallyproactiveandpositiveaboutmakingthecaseforourservicetoseniormanagementinourTrust.
Wecollectevidenceoneverythingfrompatientsatisfaction,tothenumberofpeoplewe’vebeenabletodischargebackintoprimarycarebecausetheynolongerrequireoursupport–that’scurrentlyaround75%ofthepeopleweworkwith.
Wealsoofferadditionalservicestoourclientswhichtheyotherwisemightnotreceive.Forexample,wehaveastrategyforsupportingpeoplewiththeirphysicalhealth,includingofferingadviceonhealthyliving,andtakingbloodsamples.
It’sthatwillingnesstotakeextrastepsandtoinnovatethatmakesEIPservicessoattractive,andthat’swhatwe’vetriedtoshoutabout.Ithinkwe’reabletodothatbecausethepeoplewhoworkforEIPservicesarereallypassionateandpersonallyinvestedinwhattheydo.Wehaveacleartangiblegoalofhelpingyoungpeopletorecover,whichperhapsisn’tthesameforservicesthathelpchronicallyillpeople.
Weknowwe’llhavetocontinuetoshoutabouthowimportantourworkis,ifwe’regoingtobeabletokeepofferingthelevelofsupportwecurrentlydo”.
Denny Reader (32), from Warwickshire, developed psychosis as a teenager. He says that the support he received from his Early Intervention service was crucial in helping him recover.
“Ihadbeenillfortwoyears,andwassectionedtwice,beforebeingreferredtotheEarlyInterventionteamwhenIwas23.Thestaffwereincrediblypositiveandrespectful,andIfeltreallyvaluedasaperson.
ItwasmuchmoreofaholisticapproachthanprevioussupportI’dreceived.Theytalkedtomeaboutmyphysicalhealth,aswellmymentalhealth,andmadesureIwaslookingaftermyself.
Iwasreferredtoapsychologist,whohelpedmetobecomemoreawareofmyowncondition.AsIgainedmoreinsightintomyillness,IfeltIwasmoreincontrolofit,whichplayedabigpartinhelpingmerecover.Iwasalsogivenafantasticsocialworker,whoreallylistenedtome,andwestruckupaverystrongrelationship.Hehelpedmetogetinvolvedinsocialgroups,includingabowlinggroup,whichenabledmetomeetotherpeopleandfeellessisolated.
*Nothisrealname.8 Rethink Mental Illness. Lost Generation
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Rethink Mental Illness. Lost Generation 9
Tackling inequality for mental health
ThevalueandbenefitsofEarlyInterventioninPsychosis(EIP)servicesareevenmoreimportantinthecontextoftheGovernment’scommitmenttoachieving‘parityofesteem’formentalhealthwithintheNHS.Thatmeansgivingpeoplewithmentalillnessequalpriorityandqualityofcaretopeoplewithphysicalillness.
Butthisisfarfromarealityforpeoplewithpsychosis.ManypeoplemissoutoncrucialtreatmentsrecommendedbytheNationalInstituteforHealthandCareExcellence(NICE).Asaresult,peoplewithpsychosisoftenfaceappallinghealthproblemsandpoorqualityoflife.
• Peoplewithpsychosisandotherseverementalillnessesdieonaverage15-20yearsyoungerthanthegeneralpopulation,mainlyfrompreventablephysicalhealthproblems.22
• Therearenomandatorywaitingtimesforaccesstospecialistmentalhealthservices,asthereareinphysicalhealthcare.23
• Fewerthan30%ofpeoplewithschizophreniareceiverecommendedphysicalhealthchecks.24
• Only8%ofpeoplewithpsychosisandschizophreniaareinemployment.25
• Fewerthan50%ofpeoplewithschizophreniaareofferedrecommendedtalkingtherapies.26
• WhileNHSfundingremainsstableacrosstheboard,mentalhealthtrustsinEnglandhavehadtheirfundingcutbymorethan2%inrealtermsoverthepasttwoyears.27
Inthecontextofthesehealthinequalities,thevalueoftheholisticsupportofferedbyEIPservicesisevenmoreclear.Thesupporttheyofferintermsofphysicalhealth,talkingtherapies,andemploymentsupport,arerarelyavailabletoyoungpeoplewithpsychosisanywhereelseinthehealthsystem.
ThiswasrecognisedbytheSchizophreniaCommissionin2012,whichrecommendedEIPservicesasoneofthemosteffectivemodelsforsupportingpeoplewithpsychosis,andsaidthattheholisticethosofEIPservicesshouldunderpinallmentalhealthservicesforpeopleaffectedbypsychosis.28
EIPservicesshouldbeviewedbylocalandnationaldecision-makersasasolutiontosomeoftheproblemscausedbyinequalitiesintheNHS,andanimportantsteptowardsachieving‘parityofesteem’.
“Early Intervention in Psychosis has been the most positive development in mental health services since the beginning of community care”
TheSchizophreniaCommission2012
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10 Rethink Mental Illness. Lost Generation
Early intervention under threat
FromDecember2013–January2014,RethinkMentalIllnessandtheIRISNetworkconductedacomprehensivesurveyofEarlyInterventioninPsychosis(EIP)servicesacrossEnglandtoinvestigatehoweconomicandpoliticalpressuresareimpactingonthem.29Morethan75%ofEIPservicesandteamscompletedthesurvey.
What we found
We asked:
• Comparedwiththelastfinancialyear,howhasyouroverallservicebudgetchanged?
• Howdoyoufeeltheabovechanges(andanyotherrelevantfactors)haveaffectedthequalityoftheEIPservice?
• Hastheskillmixinyourteamchanged?Forexample:newposts,increasedstafftraining,downgradingofposts,lossofcertainposts.
Budgets are being squeezed in half of all EIP services
50% of services say their budget has decreased in the past year.
17% say their budget has been reduced by 6-10%.
11% say they have faced cuts of 11-20% in the last year.
50% of services say their budget has not changed in the last year.
No services say that their budget has increased in the last year.
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Rethink Mental Illness. Lost Generation 11
Quality of EIP services is being adversely affected
53% of services say the quality of their service has decreased in the past year.
32% say their quality has not changed in the last year.
16% say their quality has improved in the last year.
Staff posts are being lost or downgraded
58% of services say they have lost staff in the past year.
18% report no changes to staff levels in the last year.
10% report an increase in staffing in the last year.
10% 20% 30% 40% 50% 60% 70% 80% 90% 100%0%
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12 Rethink Mental Illness. Lost Generation
Uncertainty impacting on staff morale
Anumberofservicesraiseconcernsaboutwiderchangestakingplacewithintheirmentalhealthtrust.Someserviceshavejustbeenthroughreconfigurations,andarestillunsureabouthowthatcouldimpactwhattheydoonalongtermbasis.OtherservicesareanxiousaboutwhatthenextroundofcommissioningdecisionswillbringinApril2014.
Generally,thereisagreatdealofuncertaintyamongservicesaboutthefuture,despitetheexcellentoutcomesthatEIPservicesachieve.Thisisstartingtoaffectstaffmorale,whichinturnimpactsonthecaregiventoyoungpeoplewithpsychosis.
What are the implications for EIP services, and the young people they support?
Loss of crucial specialist support and expertise
Morethanhalfofservicessaytheyhaveloststaff,orhadtodowngradestaffposts,whileothersreportthattheskillsmixwithintheteamhaschanged.Insomecasesservicessaytheyhavelostspecialiststaffsuchasvocationalsupportworkers,orhadtoreplacethemwithstaffwholackexpertise.
Otherserviceswereunabletoreplacevacantpostsduetolackoffunding.Thismeansthatyoungpeoplearemissingoutontheunique,holisticsupportwhichmakesEIPmoreeffectiveintreatingpsychosisthanothercommunitymentalhealthservices.
Servicessaythattheyhavelessscopetoofferoutreachsupport,suchasworkingwithlocalschoolsorprimaryservicestoincreaseawarenessofpsychosisandhowitcanbetreated.Someservicesalsosaythattheyhavehadtoreducethefamilysupporttheyoffer.Thismeansthatcarersarelessabletoplayanactiveroleinthetreatmentthatyoungpeoplereceive,andaregivenlessinformationabouttheircondition.
Delays in accessing EIP care
Highercaseloadsandreducedlevelsofstaffareresultinginmanyyoungpeoplehavingtowaitevenlongertoaccessservices.Thisdamagestheirprospectsofrecoveringfromafirstepisodeofpsychosis,andincreasesthelikelihoodthattheywillbehospitalisedordetainedundertheMentalHealthAct.
Italsoreducestheirchancesofmakingasuccessfullongtermrecoveryfrommentalillness,andbeingabletoplayameaningfulroleinsociety.
Reduced range of interventions offered
OneofthestrengthsoftheEIPmodelistherangeofinterventionsandservicestheyoffertoyoungpeople.Servicesreportincreasingconcernsathavingtoreducetheavailablerangeofinterventionsduetostafflossesandincreasingtimepressures.Thismeansthatyoungpeoplewithpsychosisarelesslikelytogetsupportwiththeirphysicalhealth,employmentandtraining,andsocialskills.
Higher than recommended caseloads
Oursurveydidnotexplicitlyaskaboutcaseloads,buttellingly,nearlyathirdofteams(31%)reportthattheircaseloadshaverisenabovetherecommendedlevel.Servicessaythisisduetostafflosses,pressuretomeettargets,anddifficultiesindischargingpeopletoothermentalhealthteams.
TheresultisthatyoungpeoplearegettinglesstimeandsupportfromEIPprofessionals.ItalsomeansthatEIPteamsareforcedtodischargeyoungpeopletolesseffectivementalhealthservicesorprimarycare,beforetheyhavecompletedtherecommendedthreeyearsofsupport.
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Rethink Mental Illness. Lost Generation 13
“Vulnerable young people are being left to fend for themselves”
John* is a community mental health nurse in the north east of England.
“Weusedtohavealarge,standaloneEIPserviceinourarea,madeupofseveralteamsandaround40dedicatedclinicalstaff.
Butthatallchangedtwoyearsago.OurTrusthadtocutcommunitymentalhealthprovisionbyover10%,soitmergedtheEIPteamswiththeCommunityMentalHealthTeams(CMHTs).
Asaresult,earlyinterventionhaseffectivelydisappearedinourarea.Forastart,wenowhavemuchlesscapacitytoidentifyandtakeonyoungpeoplewhocouldbenefitfromoursupport.Weusedtoidentifyaround100youngpeopleeachyear,butnowthat’sdownto50.Itmeansthatalotofvulnerableyoungpeoplearebeinglefttofendforthemselves.
Everyonehasmuchbiggercaseloadsnow.Weeachusedtosupportaround15peopleatatimeattheEIPservice,butnowitcanbeanythingupto45people.Asaresult,wecan’tgiveyoungpeoplethetimeorspecialistsupporttheyreallyneed.
Oneofthebiggestlosseshasbeenthesocialandhealthsupportweusedtooffer,likegettingpeopleinvolvedinrunninggroups,goingtothegym,socialeventsandplayingfootball.Allthat’scompletelygone,becausewejustdon’thavethetime,resourcesorstafftokeepitgoing.
Itfeelslikewe’renowbackatthesameplaceweweretenyearsago,beforetheEIPservicewasfirstintroduced.ThestafffromtheEIPservicehavebeenleftcompletelydemoralised,andmanyhavedecidedtoleave.Theynolongerfeeltheycanmakeameaningfulcontributiontosupportingyoungpeoplewithpsychosis.”
Evidence from the front line
*Nothisrealname. Rethink Mental Illness. Lost Generation 13
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14 Rethink Mental Illness. Lost Generation
Recommendations
ThisreportshowsthatEarlyInterventioninPsychosis(EIP)servicesarestrugglingtomaintainqualitysupportforyoungpeoplewithpsychosis,inthefaceoffundingcutsandincreasinguncertaintyaboutthefuture.
EIPisnotaluxuryservice,andfurthercutstofundingwillleavetensofthousandsofyoungpeoplewithoutthesupporttheyneedtorecoverandgainagoodqualityoflife.ItwillresultinmoreyoungpeoplegoingintocrisisorbeingdetainedundertheMentalHealthAct,andwillplaceNHSservicesunderevengreaterstrain.NHSEnglandhasacknowledgedthatcutstoEarlyInterventionservicesareincreasingdemandforbedsonmentalhealthwardsforyoungpeople.30
ButdespitetheexcellentclinicalandeconomicoutcomesthatEIPservicesoffer,theyarecurrentlyoverlookedintheNHS’squalityindicatorframeworks.Thismeansthatnationalandlocaldecision-makerscannotbeheldtoaccountforwhetherornotyoungpeopleacrossthecountryareabletoaccessEIPcare.Wethinkthisisunacceptable,andweknowwhatneedstobedone.
14 Rethink Mental Illness. Lost Generation
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Rethink Mental Illness. Lost Generation 15
Thehuman,socialandeconomiccostsoffailingtoprotectEarlyInterventionservicesaretoogreattoallowthattohappen.RethinkMentalIllnessandtheIRISNetworkarecallingontheGovernment,NHSEnglandandcommissionerstoensurethatyoungpeoplewithpsychosisgetthesupporttheyneedbyimplementingthefollowingrecommendations:
Call to action
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Clinical Commissioning Groups(CCGs) mustcommissionEIPservicesthatofferspecialistemploymentandphysicalhealthsupport.Theyshouldensurethatservicesmeetlocaldemand,byusingavailabledatawhichpredictstheprevalenceoffirstepisodepsychosisintheirarea.31
The Government mustintroduceamaximumwaitingtimeof28daysforaccessingEIPservicesfromthepointofreferral,ensuringthatyoungpeoplereceiveEIPcareasearlyintheirillnessaspossible.
NHS England mustdesignCQUINsandotherfinancialincentivestoensurelocalcommissionersprioritiseandrewardgoodqualityEIPservices.
The Government mustcollectdataabouthowlongpeoplewaitbeforereceivingEIPcare,aspartoftheNationalMentalHealthMinimumDataSet.32
NHS England shouldcarryoutanannualauditofEIPservicestocheckhowratesofaccesscomparetooveralldemands,andtomonitordelaysinaccessingcare.ItshouldalsomeasurewhetherEIPservicesreflectbestpracticeasoutlinedintheIRISNetworkguidelines.33
The Government shouldincludemeasuresrelatingtoEIP(suchasspeedofaccesstoEIPcare)inthevariousqualityindicatorframeworksfortheNHS.
CCGsshoulddesignlocalcarepathwaysthroughconsultationwithyoungpeoplewithlivedexperienceofpsychosis,carersandfamilies.
NHS England shouldmakeitmandatoryformentalhealthproviderorganisationstocollectdataontheamountoftimepeoplewaitbeforereceivingtreatmentforafirstepisodeofpsychosis,delaysinaccessingEIPandratesofaccesstoservices.Thisdatashouldthenbeincorporatedintothevariousoutcomesframeworks.34
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16 Rethink Mental Illness. Lost Generation
Protecting young people: what politicians need to do now
Thisreportshowsthattherealityforyoungpeoplewithpsychosiscontrastsstarklywithwhatpoliticianssayshouldbehappening.Thevalueandimportanceofearlyinterventionforyoungpeopleisrecognisedinanumberofkeystrategiesandpolicies.Buttheywillhavelittleornoimpactunlessnationalandlocaldecision-makerstakeactiontomakethemareality.
Inthecurrenteconomicclimate,itismoreimportantthaneverthathealthservicesmaximisetheirresourcesandreducecosts,whileimprovingpeople’scareandcreatinglastingpositiveoutcomes.Atanationallevel,weareseeingadeliberateshifttowardevidence-basedpolicyandpractice.Thatiswhyitissobafflingthatserviceswhichhavesuchimpressiveoutcomes,andoffersuchsignificantsavings,arefacingmajorfundingcuts.
Nationalandlocaldecision-makersneedtorecognisethesevere,longtermhumanandeconomicimpactofallowingEIPservicestobedilutedorhollowedout.Notonlydoesearlyinterventionhelppeoplerecoverandoffersavings,itsaveslives.
Thereisonlyonewaytoavoidwritingoffagenerationofyoungpeoplewithpsychosis,andthatistosecurethefutureofservicesthathavebeenproventowork.
•TheGovernment’smentalhealthstrategyhighlightstheimpressiveclinicaloutcomesachievedbyEIPservices,andthelongtermeconomicsavingstheyoffer.35
• TherecentlyupdatedNationalInstituteforHealthandCareExcellence(NICE)guidelinesonpsychosisandschizophreniarecommendthatanyoneexperiencingtheonsetofpsychosisshouldbeofferedEIPcareregardlessoftheirage.36
• TheGovernment’srecentmentalhealthactionplannotesthatearlyinterventioncanmakea“massivedifference”inaddressingmentalhealthproblemsamongyoungpeople.37
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Rethink Mental Illness. Lost Generation 17
1. NationalInstituteforHealthandCareExcellence,2014.Costing statement: Psychosis and schizophrenia in adults: treatment and management.
2. Melle,I.,Johannesen,J.O.,Friis,S.etal,2006.Early detection of the first episode of schizophrenia and suicidal behaviour,AmericanJournalofPsychiatry,163,800–804.
3. TheCommissioningforQualityandInnovation(CQUIN)paymentframeworkenablescommissionerstorewardexcellencebylinkingaproportionofhealthcareproviders’incometotheachievementoflocalquality.NHSEngland,2013.Commissioning for quality and innovation (CQUIN): 2014/15 guidance.
4. TheIRISNetwork,2012.The IRIS Network Guidelines,http://www.iris-initiative.org.uk/.TheGuidelinessetoutadviceonthebestmodelofcareforpeopleexperiencingafirstepisodeofpsychosis.TheyareofferedbytheNationalinstituteforHealthandCareExcellence(NICE)asaresourceforimplementingNICEguidelinesonpsychosisandschizophrenia.
5. McCroneP,KnappM,DhanasiriS,2009.Economic impact of services for first-episode psychosis: a decision model approach.EarlyInterventioninPsychiatry,3(4),266–273.
6. RethinkMentalIllness,2013.Psychosis factsheet,www.rethink.org/resources/p/psychosis7. Prof.MBirchwoodetal,2013. Reducing duration of untreated psychosis: care pathways to early intervention in psychosis services.
BritishJournalofPsychiatry.8. Alvarez-Jiminez,M.Etal,2012.Road to full recovery: longitudinal relationship between symptomatic remission and psychosocial
recovery in first episode psychosis over 7.5.PsychologicalMedicine.9. TheIRISNetwork,2012. The IRIS Network Guidelines,http://www.iris-initiative.org.uk/10. Melle,I.,Johannesen,J.O.,Friis,S.etal,2006.Early detection of the first episode of schizophrenia and suicidal behaviour,American
JournalofPsychiatry,163,800–804.11. McCroneP,ParkAL,KnappM,2010.Economic Evaluation of Early Intervention (EI) Services: Phase IV Report.PSSRUDiscussion
Paper2475.London,UK:PSSRU,LondonSchoolofEconomicsandPoliticalScience.12. BrownS,KimM,MitchellCandInskipH.,2010.Twenty-five year mortality of a community cohort with schizophrenia.BritishJournal
ofPsychiatry196pp116–121;ParksJ,SvendsenD,SingerPetal,2006.Morbidity and Mortality in People with Serious Mental Illness.13thtechnicalreport.Alexandria,Virginia:NationalAssociationofStateMentalHealthProgramDirectors.
13. http://www.iphys.org.au/what_is_HeAL.html14. McCroneP,KnappM,DhanasiriS,2009.Economic impact of services for first-episode psychosis: a decision model approach.Early
InterventioninPsychiatry,3(4),266–273.15. DrMargaretMurphy,ChairoftheClinicalReferencegroupforNHSEngland,recognisedthelinkbetweencutstoEIPservicesand
increaseddemandofbedsinpsychiatricwards,inaninterviewonToday,BBCRadio4,on20thFebruary2014.16. AndrewsA,KnappM,ParsonageM,McCroneP,2012.Effective interventions in schizophrenia; the economic case.LondonSchoolof
EconomicsandPoliticalScience.17. NationalInstituteforHealthandCareExcellence,2014.Costing statement: Psychosis and schizophrenia in adults: treatment and
management.18. Garetyetal,2006.Specialised care for early psychosis: symptoms, social functioning and patient satisfaction,BritishJournalof
Psychiatry,188,37-45.19. AndrewsA,KnappM,ParsonageM,McCroneP,2012.Effective interventions in schizophrenia; the economic case.LondonSchoolof
EconomicsandPoliticalScience.20. McCroneP,ParkAL,KnappM,2010.Economic Evaluation of Early Intervention (EI) Services: Phase IV Report.PSSRUDiscussion
Paper2475.London,UK:PSSRU,LondonSchoolofEconomicsandPoliticalScience.21. Lesteretal,2011.Views of Young People in Early Intervention Services for First Episode Psychosis in England,PsychiatricServices.22. BrownS,KimM,MitchellCandInskipH.,2010.Twenty-five year mortality of a community cohort with schizophrenia.BritishJournal
ofPsychiatry196pp116–121;ParksJ,SvendsenD,SingerPetal,2006.Morbidity and Mortality in People with Serious Mental Illness.13thtechnicalreport.Alexandria,Virginia:NationalAssociationofStateMentalHealthProgramDirectors.
23. NHSEngland,2013.The NHS Constitution.24. RoyalCollegeofPsychiatrists,2012.Report of the National Audit of Schizophrenia.25. TheSchizophreniaCommission,2012.‘The Abandoned Illness – A report by the Schizophrenia Commission’.26. RethinkMentalIllness,Mindetal,2013,‘We still need to talk’.27. BBCNews,2013,‘Funds cut for mental health trusts in England’.28. TheSchizophreniaCommission,2012.‘The Abandoned Illness – A report by the Schizophrenia Commission’.29. ResponseswerecollectedbyregionalrepresentativesoftheIRISNetworkbetweenDecember2013andJanuary2014.Wereceived
96responseoutofapossibletotalof125.TheresponseswerethenanalysedbytheRethinkMentalIllnesspolicyteam.AllregionsofEnglandwererepresentedinthesurvey(NorthWest,NorthEast,SouthWest,London,EastMidlands,Yorkshire,NorthEast,SouthEast,Eastern,WestMidlands).
30. DrMargaretMurphy,ChairoftheClinicalReferencegroupforNHSEngland,interviewedonToday,BBCRadio4,20thFebruary2014.31. www.PsyMaptic.org–atooldevelopedbyscientistsattheUniversityofCambridgetopredictthenumberofindividualsexpectedto
developafirstepisodeofpsychosis.32. http://www.hscic.gov.uk/mhmds33. NHSOutcomesFramework,ClinicalCommissioningGroupOutcomesIndicatorSet,PaymentbyResultsformentalhealthservices.34. NHSOutcomesFramework,ClinicalCommissioningGroupOutcomesIndicatorSet,PaymentbyResultsformentalhealthservices.35. HMGovernment,2011.‘No health without mental health’.36. NICE,February2014.Psychosis and schizophrenia in adults: treatment and management.37. DepartmentofHealth,2014.Closing the gap: Priorities for essential change in mental health.
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18 Rethink Mental Illness. Lost Generation
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