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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.
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
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.
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”
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
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
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%
6 Rethink Mental Illness. Lost Generation
Why Early Intervention in Psychosis is so important
EarlyInterventioninPsychosis(EIP)teamsarethebestmodelforofferingearlyinterventiontoyoungpeoplewithpsychosis.Theytakeaholisticapproachtosupportingpeopleagedbetween14and35torecoverfromafirstepisodeofpsychosis.Thatincludesofferingsupportfromawiderangeofhealthprofessionals,includingpsychiatrists,psychologists,communitymentalhealthnurses,socialworkersandsupportworkers.9Thisgivesyoungpeopleabetterchanceofexperiencingagoodqualityoflife.
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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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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
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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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.
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%
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.
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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Recommendations
ThisreportshowsthatEarlyInterventioninPsychosis(EIP)servicesarestrugglingtomaintainqualitysupportforyoungpeoplewithpsychosis,inthefaceoffundingcutsandincreasinguncertaintyaboutthefuture.
EIPisnotaluxuryservice,andfurthercutstofundingwillleavetensofthousandsofyoungpeoplewithoutthesupporttheyneedtorecoverandgainagoodqualityoflife.ItwillresultinmoreyoungpeoplegoingintocrisisorbeingdetainedundertheMentalHealthAct,andwillplaceNHSservicesunderevengreaterstrain.NHSEnglandhasacknowledgedthatcutstoEarlyInterventionservicesareincreasingdemandforbedsonmentalhealthwardsforyoungpeople.30
ButdespitetheexcellentclinicalandeconomicoutcomesthatEIPservicesoffer,theyarecurrentlyoverlookedintheNHS’squalityindicatorframeworks.Thismeansthatnationalandlocaldecision-makerscannotbeheldtoaccountforwhetherornotyoungpeopleacrossthecountryareabletoaccessEIPcare.Wethinkthisisunacceptable,andweknowwhatneedstobedone.
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Rethink Mental Illness. Lost Generation 15
Thehuman,socialandeconomiccostsoffailingtoprotectEarlyInterventionservicesaretoogreattoallowthattohappen.RethinkMentalIllnessandtheIRISNetworkarecallingontheGovernment,NHSEnglandandcommissionerstoensurethatyoungpeoplewithpsychosisgetthesupporttheyneedbyimplementingthefollowingrecommendations:
Call to action
1.
2.
3.
4.
5.
6.
7.
8.
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
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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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
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