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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

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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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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.

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

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

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

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

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

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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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References

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