substance misuse treatment framework service user involvement · substance misuse treatment...

Substance Misuse Treatment Framework (SMTF) Service User Involvement

Digital ISBN 978 0 7504 1718 2 © Crown copyright July 2014 WG22399

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Contents1. Introduction 2

1.1 Purpose 2

1.2 Context 2

1.3 Background 3

2. Part1:KeyGuidanceandCriteriaforServiceUserInvolvement 52.1 Introduction 5

2.2 PrinciplesofServiceUserInvolvement 5

2.3 ServiceUserInvolvement–responsibilityandaccountability 5

2.4 BenefitsofServiceUserInvolvement 7

2.5 ModelsofServiceUserInvolvement 8

2.6 ServiceUserInvolvementand‘Co-production’ 10

2.7 KeyCriteriaforServiceUserInvolvement 11

3. Part2:ImplementationandCaseStudies 123.1 PuttingPrinciplesintoPractice 12

3.2 AccountabilityandGovernance 13

3.3 Expenses 13

3.4 EngagingServiceUserswithDiverseNeeds 13

3.5 Languages 14

3.6 EngagingChildrenandYoungPeople 14

3.7 InvolvingExpectantMothers 15

3.8 FamiliesandCarers 15

3.9 MethodsofInvolvement 15

3.10 CommunityHealthCouncils 17

3.11 CaseStudiesofGoodPractice 17

Annexes&Appendices

Annex1–Definitionsofkeyterms 23

Annex2–10NationalPrinciplesforPublicEngagementinWales 24

Annex3–ChecklistforServiceUserInvolvement 26

Appendix1–UsefulLinks 30

Appendix2–SampleCharterforServiceUserInvolvement 31

Appendix3–PersonalQualities 33

Appendix4–SkillsRequired 34

Appendix5–SkillsforWorkers 35

Appendix6–InvolvementForums 36

Appendix7–MappingServiceUserInvolvementActivities 37

Appendix8–Developingaserviceuserinvolvementstrategy 38

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1. Introduction

1.1 PurposeThisguidancedocumentisacomponentoftheWelshGovernment’sSubstanceMisuseTreatmentFramework.ItisintendedtoprovideguidanceontheinvolvementofserviceuserstoAreaPlanningBoards(APBs),servicecommissioners,plannersandprovidersandtoserviceusers,theirfamiliesandcarers.

Thisdocumentreplacesthe‘ServiceUserInvolvementFramework’publishedin2008.Althoughthebackgroundtoandprinciplesofserviceuserinvolvementremainunchanged,theoriginaldocumenthasbeenrevisedtoprovideaclearerstatementonhowtheserviceuserinvolvementagendashouldbetakenforward.

Thisrevised‘ServiceUserInvolvementFramework’:

• includesfurtherguidanceonhowtheprinciplesofserviceuserinvolvementshouldbeimplemented;

• setsminimumcriteriaforeffectiveserviceuserinvolvementtoensurethataconsistentapproachcanbeimplementedbyservicecommissionersandproviders;

• offerssuggestionsonhowserviceuserscanbeengagedwithinavarietyofmoremeaningfulwaysoverandabovecurrentpractices;

• includesasectiononbestpracticeofserviceuserinvolvement,includingcasestudiesfromarangeofpolicyareas.

Thisdocumenthasbeenproducedutilisingtheprinciplesofco-production,recognisingtheresourcesthatcitizensalreadyhave,anddeliveringserviceswith,ratherthanforserviceusers.Acollaborativeapproachwasappliedwhenrevisingtheoriginaldocument.ServiceusernetworkswereutilisedthroughtheAllWalesServiceUserMovementgroup(‘AWSUM’)toensurethattheviewsofthosewhoaccessservicesinWaleswereabletoshapetherevisedframework.APBshavealsobeencontactedtoinformtheinitialdraftofthisdocumentandithassubsequentlyundergoneaformalconsultationprocess.

AnEasyReadversionofthisframeworkisalsoavailable.

1.2 ContextTherehasbeenandcontinuestobeconsiderablediscussionaboutserviceuserinvolvementandparticipationinthesubstancemisusefield.However,alackofclarityremainsonexactlywhatismeantbytheterms‘involvement’and‘participation’.ThedefinitionofkeytermsusedinthisdocumentcanbefoundinAnnex1.

Section183oftheNationalHealthService(Wales)Act2006statesthat:

“Each Local Health Board must make arrangements with a view to securing, as respects health services for which it is responsible, that persons to whom those services are being or may be provided are, directly or through representatives, involved in and consulted on—

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(a)theplanningoftheprovisionofthoseservices,

(b)thedevelopmentandconsiderationofproposalsforchangesinthewaythoseservicesareprovided,and

(c)decisionstobemadebytheLocalHealthBoardaffectingtheoperationofthoseservices.”

ThereisthereforeastatutorydutyonLocalHealthBoardstomakearrangementswiththeaimofinvolvingpatientsandthepublicintheplanninganddecisionmakingprocessesofservices.

Inadditiontothisstatutoryduty,Standard8of‘theNationalCoreStandardsforSubstanceMisuseServicesinWales’(May2010)providesthat“the views of service users, carers, relatives and the public should be taken into account in the design, planning, delivery and review of all substance misuse services, including general advice and information”.

TheWelshGovernmentremainscommittedtoensuringthatserviceusersareinvolvedintheplanning,designanddeliveryofsubstancemisuseservicesinWalesandthatwecontinuouslyimproveinthisarea.Thisguidanceisintendedtoreiteratetheimportanceofinvolvingserviceusersinthedevelopmentanddeliveryofalloutcomebasedcommissioningstrategiestoallsubstancemisuseservicecommissionersandproviders,includingLocalAreaPlanningBoards.

InEngland,theNationalTreatmentAgencyhasdevelopedsimilarguidancefortheinvolvementofsubstancemisuseserviceusersandfamilymembers,alongsidesuchgroupsastheAlliance(anadvocacygroup)andtheDrugUsersForum.

1.3 BackgroundofServiceUserInvolvementHistoricallypeoplewhomisusedsubstances,orwereatriskofsubstancemisuse,wererarelyinvolvedinhelpingtodevelopthehealthandwelfareservicesthattheyaccessed.Therewasaperceptionthatsubstancemisusersdidnotrecognisethattheyhadanythingtooffertothedevelopmentofsubstancemisusepolicyandpracticeatanylevel.Indeedtherehasbeenaperceptionthatpeoplewhomisusesubstanceshaveverylittletooffergovernments,servicesandthecommunity.Inrealitynothingcouldbefurtherfromthetruth.

Duringthepasttwentyyears,peoplewhomisusesubstancesorwhousesubstancemisuseservicesareincreasinglybeingrecognisedascrucialcomponentsinthedevelopmentofeffectiveservices.

EarlyexamplesofserviceuserinvolvementgroupswerefoundedintheNetherlandsthroughanorganisationcalled‘JunkyBond’whichhassincebeenamalgamatedwithanAmsterdamservicecalledBelangenverenigingDruggebruikersMDHG,andtheUSA(theNationalAssociationofMethadoneAdvocates1973).MorerecentlyactiveserviceuseranddrugusergroupshavebeendevelopedinGermany,Australia,CanadaandSwitzerland.

Thedevelopmentofpatients’powerwithintheUKhealthfieldsandespeciallyinthelearningdisabilitysectorandmentalhealthsectorshowedsuccessfulinvolvementinsimilarlystigmatisedpatients.Inthemid1980stheHIV/AIDSepidemicgaveaddedimpetustotheneedtoimproveservicesforpeoplewho

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misusedrugsandwereatriskfrombloodborneviruses.TheinvolvementofpeoplewithHIVwasanessentialcomponentinaddressingdrugrelatedharms.

Theimportanceofserviceuserinvolvementisincreasinglybeingrecognisedwithinthepublicsector,whilstconceptssuchasco-production,discussedlater,arealsogainingground.Casestudiesofgoodpracticeofserviceuserinvolvementcannowbefoundinboththehealthsectorandinwiderpublicservices.ExamplesofthesecasestudiescanbefoundinPart2ofthisdocument.

Sincetheoriginal‘ServiceUserInvolvementFramework’waspublished,the‘Recovery’agendahasdevelopedgreatermomentuminWalesandothercomponentsoftheSubstanceMisuseTreatmentFrameworkhavere-enforcedtheimportanceofserviceuserinvolvement.TheRecoverySubstanceMisuseTreatmentFrameworkprovidesguidanceonhowproviderscanofferservicesandinterventionstomaximisetheopportunityforserviceuserstoengageinappropriatesupportandtreatment,therebyenablingthemtomakechangesintheirbehaviourtoimprovetheiroverallchancesofsustainablerecovery.

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Part1:ServiceUserInvolvementFramework

KeyGuidanceandCriteriaforServiceUserInvolvement

2.1 IntroductionThisdocumentseekstopromotethebenefitsofinvolvingserviceusersinthedevelopmentofpolicy,andinthedesign,planning,deliveryandevaluationofsubstancemisuseservices,atalllevels.Itisaimedatsubstancemisuseserviceusers,providersandcommissionerswithinthestatutory,voluntaryandindependentsectorsandwithintheCriminalJusticeSystemwhereappropriate.

KeydefinitionsrelatingtoserviceuserinvolvementcanbefoundinAnnex1ofthisdocument.

2.2 PrinciplesofServiceUserInvolvementServiceuserinvolvementbuildsontheprinciplethatwhilstprofessionalsprovideexpertadvice,thepeoplewhousetheserviceareexpertsonboththeirowntreatmentneedsandonhowservicescanbeimprovedinthefuture.

Allowingpeopletocontributeindifferentways,meansthattheybecomevaluedasassetsratherthanrecipientsofservicesandthatprovisioncanmoveawayfromacultureofdependencytowardsacultureofjointdecisionmakingandresponsibility.

Serviceusershaveuniqueexperiences,skillsandabilitiesthatenablethemtoprovide‘expertadvice’inthisfield;thereforesubstancemisusestrategiesandservicesarelikelytobemoreeffectiveiftheyaredevelopedanddeliveredwiththedirectinvolvementofthepeoplewhousethem.

2.3 ServiceUserInvolvement–responsibilityandaccountability

AtNationalLevel

Ultimately,itistheWelshMinisterswhoarelegallyresponsiblefortheprovisionofhealthcare,includingsubstancemisusetreatments,inWalesundersections1and2oftheNationalHealthService(Wales)Act2006.

However,substancemisuseserviceusersshouldbeinvolvedateverylevelofthedevelopment,delivery,andreviewofsubstancemisuseservicesinorderto:

• complywithSection183oftheNationalHealthService(Wales)Act2006andthestatutorydutyplacedonLocalHealthBoardstoinvolvepatientsinplanninganddecisionmakingprocesses

• ensurethatsubstancemisuseservicesaredevelopedtomeettheneedsofserviceusers

• ensurethatsubstancemisuseservicesprovidedareofgoodquality

• ensurethedeliveryofpositivetreatmentoutcomesfortheindividuals.

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Itisthereforeessentialforserviceprovidersandcommissionerstoadoptagenuinepartnershipapproach,wheresubstancemisuseserviceusershavetherighttobeinvolvedinthedesign,commissioninganddeliveryofservices.

TheWelshGovernmentrequiresservicecommissioners,providersandplannerstoactivelyensurethatserviceusersaregenuinely,meaningfullyandconstructivelyinvolvedinallaspectsofsubstancemisuseservices.Thisinvolvementshouldnotbeseenasaone-offinterventionor‘tick-in-the-box’exercise,butshouldbecomeembeddedintheprocessofsubstancemisuseserviceprovisionacrossWales.

Althoughthisframeworkstronglyadvocatestheinvolvementofserviceusersinthecommissioningcycle,serviceusersarenotultimatelyresponsibleforthedeliveryorfailureofaservice.

AtLocalLevel

TheCrimeandDisorderAct1998requiresresponsibleauthoritiesinWalestoformulateandimplement,inadditiontoastrategyforthereductionofcrimeanddisorder,astrategyforcombattingthemisuseofdrugs,alcoholandothersubstancesinthearea.

ResponsibleauthoritiesarecurrentlydefinedastheLocalAuthorities,theChiefOfficerofPoliceforthearea,FireandRescueAuthorities,theLocalHealthBoardandtheproviderofProbationservicesinthatarea

Responsibilityforplanninganddeliveringservicestotacklesubstancemisuseatalocallevellieswiththeresponsibleauthoritiesandtheirpartnerswithinthe22CommunitySafetyPartnerships(“CSPs”).

CSPsarechargedwithformulatingandimplementingastrategyfortheirrespectiveLocalAuthorityareasincombattingthemisuseofdrugs,alcoholandothersubstances.CSPsarethereforeaccountableforthedelivery,andconsequentlyanyfailure,ofthelocalsubstancemisuseservice.

APBswereestablishedin2010aspartofthenewarrangementstodelivertheWelshGovernmentSubstanceMisuseStrategy‘WorkingTogethertoReduceHarm’.TheAPBsprovidearegionalframeworkto:

• strengthenpartnershipworkingandstrategicleadershipinthedeliveryofthesubstancemisusestrategy;and,

• enhanceandimprovethekeyfunctionsofplanning,commissioningandperformancemanagement.

ThemembershipoftheAPBsincludesrepresentativesfromtheresponsibleauthoritiesinvolvedintheCSPstoensurealinkbetweentheirsubstancemisuseresponsibilities.TheAPBisamechanismwhichallowstheresponsibleauthoritiestocometogetherataregionalleveltoenabletheirstatutoryresponsibilitiestobedischarged.

ToassistAPBs,SubstanceMisuseAdvisoryRegionalTeams(“SMARTS”)havebeenestablishedbytheWelshGovernment.TheirmainroleistoprovidestrategicsupporttotheAPBsandtoassistwiththedeliveryoftheWelshsubstancemisusestrategyandlocalsubstancemisuseactionplansontheground.

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NationalPrinciplesforPublicEngagementinWales

TheNationalPrinciplesforPublicEngagementinWales(2011)provide10coreprinciplesthatareneededformeaningfulpublicengagement.TheseareattachedinAnnex2.

Inadditiontotheresponsibilitiesthatservicecommissionersandprovidershavetoensurethatserviceusersareinvolvedintheprovisionofsubstancemisuseservices,serviceusersarealsoresponsibleforanumberofelementswhenworkingtogetherwithservicecommissionersandproviders.Thisincludes:

• wherepossibleserviceusergroupsshouldmakethemselvesknowntoservicecommissionersandproviders

• serviceusersshouldbehonestabouttheirexperiencesofservices

• serviceusersshouldactivelyinputtheirviewswhenworkingwithservicecommissionersandproviders

• serviceusersshouldattempttokeeptocommitmentswherepossible.

2.4 BenefitsofServiceUserInvolvementThemeaningfulinvolvementofserviceusersoffersbenefitstoserviceproviders,servicecommissioners,individualsandthecommunityatastrategiclevel.

Atacommissioninglevel,serviceuserinvolvementinthedesignandreviewofservicescan:

• ensurethatservicesarerelevanttolocalneeds

• ensurethatservicesareaccountabletoserviceusers

• enableserviceuserstovoicetheiropiniononservicesandidentifygoodpracticeandareasofconcern

• provideavehiclethroughwhichconsultationonfutureactionplanscanbeundertaken.

Workinginpartnershipwithserviceuserscanbenefitsubstancemisuseserviceprovidersthrough:

• creatingmoreopportunitiesforpeoplewhouseorwanttouseservicestogetinvolved

• encouragingasenseofownershipofservicesforserviceusers

• empoweringserviceuserstobecomeengagedintheprovisionofservices

• aidingtherecoveryofserviceusersthroughempowermentandinvolvement

• assistinginthedisseminationofinformationandeducation

• encouragingmorepeopleintotreatmentandtoremainintreatmentuntilasuccessfuloutcome

• assistingindevelopingaskilledandresponsiveworkforce

• developinginnovativewaysofworkingthatimproveservicequality

• ensuringthatservicesmeetclientsneeds

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• providingserviceuserswithanopportunitytobevaluedanddevelopnewskillsthatenhancetreatmentoutcomes

• potentiallyincreasingcapacitythroughdevelopmentofpeersupportand/ormentoringschemes.

Thereisarelationshipbetweenserviceuserinvolvement,peersupportactivitiesandrecovery.Moreinformationontheprinciplesof‘recovery’isavailableintheSubstanceMisuseTreatmentFramework:RecoveryOrientedIntegratedSystemsofCare.

Theactiveinvolvementofserviceusersintheshapinganddeliveryofsubstancemisuseservicesbenefitsindividualsandthebroadersubstancemisusingcommunitythrough:

• providingserviceusersopportunitiestobevaluedandheard

• enablinguserstodevelopasenseofempowerment

• providingopportunitiestoshareandallowotherstobenefitfromtheiruniqueexperienceandexpertise

• providingopportunitiesfortheacquisitionofnewskillsandinterests

• providingopportunitiestodevelopmutualsupportnetworks

• ensuringthatservicesreceivedarerelevanttoserviceusersneeds

• providingopportunitiesforindividualstobecome“healthactivists”forothersubstancemisusers

• addressingthestigmaissuesthateffectsubstancemisusersbyprovidinganopportunityforserviceuserstoaddvalueandcontributetoserviceprovision.

2.5 ModelsofServiceUserInvolvement:‘TheLadderofParticipation’

Serviceusersshouldhavethefreedomandchoicetoparticipateinthedesign,deliveryandreviewofsubstancemisuseservicesinarangeofways,fluctuatingbetweenthemastheychoose.

Historically,aladderofparticipationhasbeenusedtodescribethewaysinwhichaserviceusermaywishtobecomeinvolved.

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Rung 7 InitiatingService users generate ideas for action and make all the majordecisions. Staff are available for consultation but do not take charge. For example a service user group making commissioningdecisions.

Rung 6 ImplementingService users are given responsibility for a project and its outcomes. An example of this could be service users operating a needle exchange service.

Rung 5 Decision SharingService users share responsibility for decision making with staffor commissioners. This could include being involved in the recruitment of staff members within a project.

Rung 4 RepresentationService users represent the views of their peers on specificitems, this might be through service users forums or message boards.

Rung 3 ConsultationStaff or commissioners generate ideas and make key decisions, but consult service users. Staff or commissioners take service usersviews into account and give feedback on decisions and action.For example, consulting on proposed changes to opening hours within a service, or the development of a new service.

Rung 2 Positive ContributionsService users are asked for their views on something but don’t haveany say about how these questions are asked or what happens toany of the information they gave. An example of this could be anannual service user satisfaction survey carried out within agenciesor commissioners, where the questionnaire is developed by staff.

Rung 1 InformationService users are given information by staff. They may passivelyconsume this (poster, leaflets) or actively (meetings that giveinformation). Staff have control of the information, deciding what,when and how it is shared with service users.

Susan Lawrence(Adapted from Hear by Right/Roger Hart/Arnstein)

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Serviceusersmaychoosetobeinvolvedatoneleveloveranotherduetotheirpersonalstrengths,circumstancesorthenatureororganisationthattheyareincontactwith.Thelevelatwhichserviceusersareengagedatshouldbeappropriatetothesituationinvolved.Forexamplein-patientdetoxificationservicesmayofferdifferentopportunitiesforinvolvementcomparedtoopen-accessdrop-inservices.

Atallrungsoftheladder,thelevelofserviceuserinvolvementisthedecisionoftheserviceuserthemselves.Thisisparticularlytrueathigherrungsoftheladder,whichinsomecasesareonlyachievablewhereserviceusersarehappytovolunteertheirtime.

However,commissionersandprovidersshouldprovideopportunitiesforinvolvementatallsevenlevelsoftheladderwhereverpossible.

CasestudiesofserviceuserinvolvementthatinvolvedifferentlevelsontheladderofparticipationarelocatedinPart2ofthisdocument.

2.6 ServiceUserInvolvementand‘Co-production’Theneedforthepublicsectortoembedco-productionintoserviceprovisionisbecomingincreasinglyapparent.NESTA1(NationalEndowmentforScience,TechnologyandtheArts)describeco-productionas‘deliveringpublicservicesinanequalandreciprocalrelationshipbetweenprofessionals,peopleusingservices,theirfamiliesandtheirneighbours’.

Co-productionalignstothehighestlevelofserviceuserinvolvement(seethe‘ladderofparticipation’above).Itallowsthoseserviceuserswhowishtobeinvolvedtoco-commission,co-design,co-deliveryandco-evaluateservices.OvertimeitisultimatelythislevelofserviceuserinvolvementwhichshouldbeaspiredtointheprovisionofallsubstancemisuseservicesacrossWales.

InorderforthisframeworktobefullyandeffectivelyimplementedandtodeliverontheWelshGovernment’sstatedsupportforco-productionwiderculturalandbehaviouralchangesareneededinhowserviceusersareviewed.

Itisthereforevitalthatallpartiesinvolved,whetherservicecommissionersorproviders,fullyunderstandthebenefitsandimportanceofserviceuserinvolvement.Inmanycasesitmaybenecessaryforstafftoundergotrainingonwhatconstitutesserviceuserinvolvement,howitcanbeachievedandtheimportanceofdiversityandrespect.

Organisationsmustembedserviceusersinvolvementintowiderplanningandworkforcedevelopmentstrategiesinordertoensurethatserviceusersareinvolvedatappropriatetimesandthatstaffhavetherelevantexpertisetofacilitatethisinvolvement.

Whilstserviceuserinvolvementmustplayasubstantialroleintheprovisionofallsubstancemisuseservices,theconceptofco-productionshouldalsobeconsideredbyservicecommissioners,providersandusers.

1NESTAistheNationalEndowmentforScience,TechnologyandtheArts–anindependentbodywithamissiontomaketheUKmoreinnovative

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2.7 KeyCriteriaforServiceUserInvolvementItisimportantthatbothservicecommissionersandprovidersimplementanumberofmeasurestoallowmeaningfulserviceuserinvolvementintheprovisionofsubstancemisuseservicesacrossWales.

AserviceuserinvolvementchecklisthasbeenprovidedinAnnex2ofthisdocument.Thetablelistsanumberofcriteriathatshouldbefulfilledtoenableeffectiveserviceuserengagement.Thechecklistcanbeusedtoevaluatecurrentlevelsofserviceuserinvolvementandconsiderwhatfurtherstepsneedtobetaken.Thelistisnotcomprehensivebutaimstotriggerfurtherconsiderationof,andinnovationsurrounding,howtoinvolveandconsultwithserviceusers.MoredetailsongoodpracticeofserviceuserinvolvementcanbefoundinPart2ofthisdocument.

Itshouldberememberedthatserviceuserinvolvementisadynamicprocessandinnovativemethodsofengagingwithserviceusersshouldbesoughtonanon-goingbasis.

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Part2:ServiceUserInvolvementFramework

ImplementationandCaseStudies

3.1 PuttingPrinciplesintoPractice:KeyPointstoconsiderThispartofthedocumentincludesguidanceonhowtheprinciplesofserviceuserinvolvementcanbetakenforwardandcasestudiesofsuccessfulserviceuserinvolvement.Thesecasestudiesaretakenfromdifferentpolicyareasandareintendedtoactasexamplesofgoodpracticeandillustratehowserviceuserscanbeinvolvedatmultiplepointsinthecommissioningcycle.

Whentakingforwardtheserviceuserinvolvementagendaitwillbenecessaryforservicecommissionersandproviderstoconsiderthefollowing:

• Serviceusersmayrequireadditionalsupporttobecomeinvolved.Increasinglynewformsoftechnologyandsocialmedia,suchasonlineforumsorskype,maybeusedinordertoengagewithserviceusersmoreeasily.

• Considerationshouldbegiventousingawiderangeofengagementtoolsaspossibletoensurethatasmanyserviceusersviewsarereceivedaspossible.Methodsofengagementshouldbeexpandedtoengagewithawiderrangeofserviceuserswherepossible.

• Socialmediacanbeusedinavarietyofwaystoengagewithserviceusers.Forinstance,servicescoulduseexistingwebsitesorotherformsofsmarttechnologytocapturetheviewsofserviceusers.

• Considerationshouldbegiventotrainingofallparticipants.Thisincludesthetrainingneedsandupskillingofserviceuserstobecomeserviceuserrepresentatives.Inaddition,participationtrainingforfacilitatorsorleadersofmeetingsandeventsandtrainingonthebenefitsofserviceuserinvolvementandhowitcanbeachievedmayberequiredformembersofstaff.Wherenecessarydiversityandrespecttrainingshouldalsobeconsidered.

• Supportshouldbeofferedandgiventoserviceuserswhereneeded,inordertoensurethatallserviceusersarecomfortablewithengagingwithserviceprovidersandcommissioners.

• ConsiderationshouldbegiventofundingandsupportingthedevelopmentoflocalServiceUserGroups.

• Clearproceduresshouldbesetoutforallattendeesofagroup,meetingorcommittee.

• Clearaimsshouldbelaidoutfromtheoutsetsothatserviceusersareawareoftheoveralloutcomesoughtandrolethattheyplayinachievingit.

• Regularbreaksshouldbeincorporatedandflexibilityshouldbeconsideredwithregardstotimings,locationsandlengthofmeetings.

• Serviceusersshouldbeinvolvedattheearlieststagepossibleandtheirinvolvementshouldbeconsistentthroughouttheprocess.

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• Considerationshouldbegiventocontingencyplans,inrespectofallthoseinvolved,suchasback-uporsupportrepresentativestoattendmeetings.

3.2 AccountabilityandGovernanceInordertoensurethateffectiveserviceuserinvolvementispossibleitisnecessaryforallorganisationswhoengagewithserviceuserstohaveinplacerobustaccountabilityandgovernancearrangements.

Thesearrangementsshouldensurethatallserviceuserinvolvementtakesplaceatanappropriatelevelandthatthereareindividualsresponsibleforsupportingserviceuserswhoareinvolvedwiththeorganisation.

Governancearrangementsshouldbeputinplacetoensurethatserviceusersarefullyawareofthecomplaintproceduresthatareinplaceandthatanycomplaintsreceivedareappropriatelydealtwithandescalatedifrequired.

3.3 ExpensesConsiderationmustbegiventothepaymentofserviceusersandthere-imbursementofanyexpenses.Expensesshouldbeoffered,ratherthansoughtbyserviceusersandpaymentsshouldbemadeonthedayoftheeventor,ifpossible,inadvance.

TheWelshGovernmentrecognisestheimportanceofnationalforums,suchastheAllWalesServiceUserInvolvementMovement,andwillreimburseanyexpensesincurredbyserviceuserswhoareinvolvedincontributingtosubstancemisusestrategyatanationallevel.ThisincludestheirparticipationandinvolvementontheSubstanceMisuseNationalPartnershipBoardwhichmeetsthreetimesayear.Thesamecommitmentisexpectedatregionalandlocallevelsbytherelevantauthoritieswhenengagingwithserviceusers.

3.4 EngagingServiceUserswithDiverseNeedsOrganisationsinWaleshavehadmixedsuccessinengagingsubstancemisusersfromspecialneedsandhardtoreachgroups.However,appropriatetraining,supportandplanningwillhelptoimproveandencouragetheengagementoftheseservicesusers:

• ThereisalegaldutyundertheEqualityAct2010toensurethatreasonableadjustmentsaremadetodeliverequalityofaccessforallprotectedcharacteristics.Thisdutyisanticipatoryandrequirespublicbodiestobeproactiveinmakingadjustmentstoensureallaccessandcommunicationneedsaremet.

• Whilstallinformationshouldbeinaclearjargonfreelanguage,someserviceusersmayneedinformationinotherways–e.g.Welshandotherlanguages(bothwrittenandverbal),easyread,Brailleetc.See3.5below.

• Forsomeculturesandgroupslimitingthemeetingstomembersofthatgrouponlymaymakeitmorecomfortableforthemtoparticipate(e.g.women,youngpeople,olderpeople,andabstinentserviceusers).Thismayalsobethecasewhereserviceusers’personalhistoriesorcircumstancesmeanthatitwouldbeuncomfortableforthemtoattendcertaingroupmeetings.

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• Itisimportantnottoassumethatbecausesomeonehasaspecialneedthattheywouldnecessarilyonlyneedorwantadifferentservice.

• Thoughtshouldbegivenonhowtoengagewithandcollectviewsfromthosewithlearningdisabilities.Thiscouldincludethecollectionof‘socialstories’ratherthanformalisedquestionnairesorfocusgroups,inordertogatherfeedback.

• Althoughitmaynotbeappropriateforchildrenoryoungerpeopletoattendserviceusergroupswithadults,inmanycasesdirectengagementwithyouthservicesisappropriate.Thisisparticularlyrelevantwhendevelopingsubstancemisuseeducationalservices.See3.6below.

• Beawareofserviceusersspecialholidays,eventsoractivities(holydays,schooltimes,chemistpickuptimesetc).Beawareoftimesofday,places,safetyandtransport.Therearemanydifferentspecialneedgroupsandcommunities,serviceuserinvolvementisakeywayofensuringourstrategiesandservicesareaccessibletoall.

• Thereisahighprevalenceofpeoplewithaco-occurringsubstancemisuseandmentalhealthproblemandthereforespecialconsiderationisneededwithengagingwithserviceuserswhomayalsosufferfrommentalhealthproblems.

3.5 LanguagesTheWelshLanguageAct1993obligesallorganisationsinthepublicsectorthatprovideservicestothepublicinWalestotreatWelshandEnglishonanequalbasis.‘Morethanjustwords’istheStrategicFrameworkforWelshLanguageServicesinHealth,SocialServicesandSocialCare.Theframeworkemphasisestheneedforpeopleworkinginhealth,socialservicesandsocialcaretorecognisethatmanypeoplecanonlycommunicatetheircareneedseffectivelythroughthemediumofWelsh.Therefore,whenrequired,serviceusersshouldbeabletoaccessserviceusergroupsorbecomeinvolvedintheprovisionofservicesineitherEnglishorWelsh.Insomegeographicalareas,theabilitytoaccessservicesorprovidefeedbackinWelshisvital.

Equallyitmaybenecessarytoconsiderwhethersomeserviceuserinvolvementtechniquesshouldbeavailableindifferentlanguagesandformatstoenablemaximumengagement(i.eBraille/hearingloopsetc.).Thisisparticularlyimportantformethodsthatallowserviceuserstofeedbackonaservice.Thismaybemorerelevanttosomeareasthanothers.

3.6 EngagingChildrenandYoungPeopleItisparticularlyimportanttoengagewithchildrenandyoungpeopleonissuesregardingsubstancemisuseforanumberofreasons.

Firstly,substancemisuseinchildrenpresentsparticularissuesrequiringconsiderationandatailoredresponse.Althoughadolescenceistypicallyanageofexperimentationandrisktakingintowhichsubstancemisusemaypresentasashortexperimentation,thisisoccurringinyoungerchildrenovertime.Wheremorechronic,entrenchedsubstancemisuseoccursinadolescenceitisinvariablyassociatedwith,ifnotprecipitatedbyconsiderable,complexadditional

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difficultiesnecessitatingacoordinatedmultiagencyresponsefromeducation,localauthoritychildrenservices,3rdsector,healthprofessionals(e.gCAMHS,Sexualhealth,schoolnursing&GPetc.)andoccasionallyyouthjusticeprofessionals.Thereforeengagingwithyoungpeoplewhoaredirectlyinvolvedwithsubstancemisuseservicesisvitaltoensurethattheseservicesareappropriatetolocalneed.

Secondly,engagementwithchildrenandyoungpeoplecanhavepreventativebenefitsfortheyoungpeople,thoseclosetothemandtheircommunity.Engagingwithchildrenandyoungpeopleatthetimewhentheyaremostvulnerabletotheeffectsofsubstancemisusecanbeinanimportanttoolinpreventingmanyoftheharmscaused.

Lastly,substancemisuseimpactsonchildrenandyoungpeoplewhohaveafamilymemberorcarerwithasubstancemisuseproblem.Thesechildrenareatriskfromfurthernegativeconsequencesinthefuture.Supportgroupsareanimportantmeansofengagingwiththisgroup(see3.8).

3.7 InvolvingExpectantMothersAhealthypregnancymaximisesthechanceofhavingahealthychild.Expectantmothersandtheirunbornchildrenareparticularlyatriskfromtheharmscausedbysubstancemisuse.Theappropriateandeffectiveinterventionofsubstancemisuseservicesisvitaltoensuringthattheserisksareminimised.Whereverpossiblesubstancemisuseservicesshouldengagewithexpectantmotherstoensuretheyreceivethetreatmentneededandthatlocalservicesareasaccessibleandeffectiveaspossibleforthisgroup.

3.8 FamiliesandCarersWhilstthisframeworkprimarilyrelatestoengagingwithserviceusersthemselves,itisalsoimportanttotakeonboardtheviewsandfeelingsofcarersandfamilymemberswhooftenbelievetheirconcernsareignored.

TheCarersStrategies(Wales)Measure2010placesarequirementontheNHSandLocalAuthoritiesinWalestoworkinpartnershiptoprepare,publishandimplementajointstrategyinrelationtocarers.

Carersandfamiliesshouldhaveappropriateinformationmadeavailabletothemandfurtherlearningopportunitiestodevelopskillsfordealingwithsubstancemisuseproblems.

Familiesandcarersgroupsplayavitalroleinsupportingfamilymembersandcarersofthosewithasubstancemisuseproblem,enablinggroupmemberstoprovidesupportforserviceusersthemselves.

3.9 MethodsofInvolvementTheinvolvementofserviceuserswillrequireplannedinputofresources–bothworkertimeandmoney(forexampleitmaytakelongertoachievesomeoutcomes,whereconsultationwithserviceuserstakesplace,itmaybemoreexpensivetoensuredocumentsareinajargonfreeform).

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AnumberofAPBsandproviderservicesalreadyemployserviceuserdevelopmentofficerstosupportarangeofinvolvementactivities.Whilstallstaffneedtobeinvolvingserviceusersintheirwork,itissometimeshelpfultoestablishaleadworker(SeeAnnex3).

Ensuringthatserviceusers,providersandcommissionersareabletoaccessup-to-datetrainingonserviceuserinvolvementwillbeanimportantfeatureimplementingthisframework.Planningformeaningfulandon-goingserviceuserinvolvementshouldensurethatissuesofsustainabilityandsuccessionplanningaretakenintoaccount.Serviceusersmaymoveonandwishtobelessinvolvedinconsultationandnewserviceusersmaywishtobecomeinvolvedovertime.

Aswithanyformsofengagement,itistheserviceuser’sdecisiontobeinvolvedortotakepartincertaininvolvementactivities.

Thefollowingactivitiescanbesupportedbysuchrolesorconductedindependently:

ServiceUserledinitiatives

•Volunteering,advocacy,mentoringandpeersupportInvolvingpeoplewhoareinapositiontoreflectontheirownexperiencesoftreatmentservicesandwhowishtoprovidesupporttoothers.

•PeereducationThisincludesthedisseminationofharmreductionadviceusingpeereducatorsandcanbeaneffectivewayofprovidinginformationtogroupsthatwehavemoredifficultyengaging.

•ServiceuserforumThiscouldbeintheformofaself-helpgroup,peersupport,lobbying,campaigningorinformationsharinggroup.Speakersandtrainersmaybeinvitedtospeakontopicsselectedbythemembership.Providersandcommissionersmayalsoseektheviewsofthesegroups.Socialmediaandon-linemessageboardscanofferopportunitiesforserviceuserstocontactoneanotheronanationalorevenglobalbasistoshareviewsandexperiences.

Provider/commissionerledinitiatives

•Surgeries/facetofaceinterviewsSomeserviceusersmayfeelmorecomfortablesharingtheirviewsinperson.Managersandcommissionersmaychoosetoconductopensurgerieswithinagencies,forums,GPclinicsandonanoutreachbasistogathertheviewsofserviceusers.

•StandaloneeventsThesemightbegenericorsingleissueeventstoconsultonspecificissuesortogatherinformationonneed.

•ServiceuserrepresentationonplanningteamsServiceusersshouldberepresentedonAPBs,theSubstanceMisuseNationalPartnershipBoardandotherplanninggroups.Withinorganisationstheremaybeopportunitiesforserviceuserstobeinvolvedinteammeetingsorplanningevents.Howeverthedecisiontoattendmeetingslieswiththeserviceuser.

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•Regularsurveys,questionnairesandsuggestionboxesManyagenciesconductannualsurveysorexitquestionnaires.Thisinformationcanhighlightareasforimmediateserviceimprovementandchange.

•DevelopmentandoperationofservicesAnexampleofthisworkisneedleexchangesandinformationservicesandproductionofmagazines.

•AdvisoryorreferencegroupsCommissionersandprovidersmaywishtosupportserviceuserreferencegroupsinrecognitionoftheexpertisethatserviceusershaveinthefield.Thesegroupswillbeconsultedonspecificissues,forexamplewhenservicesarecommissionedorredesigned.

3.10CommunityHealthCouncilsInadditiontoactivelyinvolvingserviceusersinserviceprovision,CommunityHealthCouncilsplayaroleinrepresentingserviceuserinterests.OneofthekeyrolesofCommunityHealthCouncilsistorepresenttheinterestofpatientsandthepublicintheNHSthrough:providinginformationandsupportforpatientsandthepublictoaccessappropriatehealthservices;elicitingthepatients/publicviewsofservices;encouragingengagementoflocalpeopleintheplanninganddeliveryofhealthservicesandprovidinganindependentcomplaintsadvocacyservice.FormoreinformationonCommunityHealthCouncils,aweb-linkhasbeenprovidedinAppendix1.

3.11CaseStudiesofGoodpracticeThefollowingcasestudiesprovideexamplesofgoodpracticeofserviceuserinvolvementatdifferentpointsinthecommissioningcycleacrossdifferentpolicyareas,includinghealthandsocialcare.

Serviceuserinvolvementinplanningservices:TheSouthWalesCancerNetwork

TheSouthWalesCancerNetworks’PatientForumismadeupofcancerpatientsandcarersfromalloverSouthWales.Thegrouphasevolvedfromaprojectsetupin2005betweenMacmillanCancerSupportandthethenthreeCancerNetworksinWales.

TheCancerNetworks(SouthWalesCancerNetworkandNorthWalesCancerNetwork)playaroleinco-coordinatingtheplanning,organisationanddeliveryofcancerservicesinpartnershipwithHealthBoards,Trusts,CommunityHealthCouncils,VoluntaryOrganisationsandPublicHealthWalesinWales.

ThePatientForumwasinitiallysetupusingaface-to-faceformatbutisnowtransitioningintoaVirtualPatientForumthatworksonataskandfinishbasis.ThisForumallowspatientstobecomeinvolvedinvariousactivitiesincludingfocusgroups;surveysandanannualconference.Patientsareinvitedtoactasrepresentativesoncommittees,boardsandsteeringgroupswhereserviceplanningoccurs.Theforummembersarealsoencouragedtobeactivelyinvolvedintheprocessatalocallevelaswell–withintheirownLocalHealthBoardorinsupportoflocalThirdSectororganisations.

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Theaimofpatientinvolvementistobuilduptherelationshipsbetweenpatients,carersandthehealthprofessionalssothatpatientscanbecomeinvolvedatthedecisionmakingprocessfromtheoutsetratherthanjustasacursory“tickinthebox”.ItgivespatientsavoiceinthedevelopmentofservicesandtheopportunityforHealthBoardsandOrganisationstolistenactivelytothisvoice.

Serviceuserinvolvementinprocuringservices:TheChildren’sCommissioningConsortiumCymru,RhonddaCynonTaff

TheChildren’sCommissioningConsortiumCymru,apartnershipof15WelshlocalauthoritieshasbeencommendedbytheChildren’sCommissionerforWalesforitseffortsinactivelyinvolvingyoungpeopleinthecommissioningandprocurementofitsfosteringservices.

WhendevelopingitsFosterCareFrameworkAgreementitapplieda‘speeddating’approachinordertoallowyoungpeoplewithexperienceofbeingincaretobecomeinvolvedintheevaluationofpotentialplacementproviders.Usinganoutcomesframeworkyoungpeopleexploredwhatwasimportanttothemaboutcareplacementsanddecidedonquestionstoaskpotentialproviders.Theseproviderswerethengiven90secondsperquestiontoanswer8questionsduringaspeciallydesignedsession.Theresponsesgivenwerethenevaluatedbyyoungpeopleandformedpartofthetenderevaluation.

Aswellasspecificeventsyoungpeoplecontinuetobeactivelyinvolvedinframeworkmanagementdevelopmentthroughothermeans.Forinstanceyoungpeoplehaverebrandeddesiredoutcomeswithfriendlierlanguageanddevelopedanonlineoutcomessurvey.Thisformspartofa360degreeoutcomescapturetoidentifywhetheroutcomesarebeingachievedbyframeworkprovidersfromtheperspectiveofyoungperson,carersandsocialworkers.TheresultsreceivedareusedaspartoftheannualperformancereviewofFrameworkprovidersandthereviewmethodhasbeenimplementedwithahighresponseratefromyoungpeople.

Serviceuserinvolvementinmaintainingservicing:TaffHousingAssociation,Cardiff

TaffHousingAssociationisacommunity-basedhousingassociation,whichoperatesinpartnershipwiththeWelshGovernment(WG),CardiffCouncil,theValeofGlamorganCouncil,NewportCouncilandlocalRSL’s.TaffHousingAssociationprovidesoverathousandaffordablehomesinCardiffaswellasspecialist,supportedhousingprojectsforyoungwomen,mothersandbabiesandmalerefugees.

TaffHousingAssociationinitiallyworkedcloselywiththesocialenterpriseSpicetodevelopacomprehensivemodelfortenantparticipation.Thishasinvolvedintroducinga‘Timebank’Scheme–usingtimecreditstoprovideopportunitiesfornotonlyTaffHousingAssociationTenantsbutalsosupportedclientstobecomemoreactiveinthecommunity.

OneTimebankcreditcanbeearnedforeachhourthatparticipantsgivetoTaffHousingAssociation,theircommunityortheirsupportedhousingproject(e.g.gardening,organisingevents,givingfeedbackonservices,attendingBoardmeetings,interviewingstaffetc.)Participantscanusetheircreditstoaccesslocal

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amenitiesandentertainment,suchasaccesstoalocalcinemaandartcentre,entrytoCardiffCastleorTechniquestandfreshfoodatlocalcafésandco-operatives.

TheaimoftheSchemeistomaximiseopportunitiesforparticipantsandtoencouragegreaterinvolvementintheircommunities,aswellaschallengingthedependencyculturethatcanquicklydevelop,underminingtheirconfidenceandcapacity.

Serviceuserinvolvementinevaluatingservices:TaffElyandRhonddaLocalDiabetesPlanningandDeliveryGroup

PontypriddandRhonddaNHSTrust,inconjunctionwithRhonddaCynonTaffLocalHealthBoard,haveawell-establishedLocalDiabetesPlanningandDeliverygroup.Thegroupwasestablishedin2004andactivelyrecognisesthevalueofpersonalcontributionsfromserviceuserstoenhancetheinsightofprofessionalsindiabetesservices.

APatientReferenceGroupactsasthelocalpointofconsultationforuserstofeedintoandbackfromthePlanningandDeliverygroup.TheReferenceGroupmeetstodiscusslocaldiabetesservicesandconsiderproposalsfordevelopments.Theiraimisto:

• ensurethatpeoplelivingwithdiabeteshaveanopportunitytoexpresstheirviews

• agreeandproducereportsonserviceuserissues

• supportandencouragetheworkofthePlanningandDeliverygroup

• actasa‘criticalfriend’totheservice,offeringanalternativeperspective,andchallengingtheassumptionsofhealthcareprofessionalsandmanagers

• suggestwaysthatotherserviceusersmightbeinvolvedandengagedinplanningservices

• engagepositivelywithprofessionalsandNHSorganisations

• feedtherangeofviewsofpeoplewithdiabetesintothediscussionsatPlanningandDeliverygroupmeetings.

Thegroupactsasthelocalsourceofuserrepresentativesandisopentothosewithdiabetesandtheircarers.Traininghasalsobeenavailableformembersofthegroup.AftereverymeetingtheReferenceGroupelectsoneortwopeoplefromthegrouptoattendtheplanninganddeliverygroupandtopresentissuesraisedduringthereferencegroupmeeting.

TogetherthePlanningandDeliverygroupandPatientReferenceGroupallowthoselivingwithdiabetestohavetheirvoicesheardandtoplayanactiveroleinshapingtheservicesavailabletothem.

ServiceUserinvolvementinreviewingservices:SubstanceMisuseservicesinWrexham

The‘PerfectEngagement’eventwashostedinFebruary2013byWASUP(WrexhamAllianceServiceUserPartnershiponbehalfofAVOW),whoengagedwithsubstancemisuseserviceusersinWrexhamCountyBorough.

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Theeventhadtwoaims.ThefirstwastogivepeoplewhouseSubstanceMisuseServicesinWrexhamanopportunitytotalkabouttheirexperienceofusingtheseservices,exploringbarriersandanypotentialsolutions.Thesecondwastofeedbacktheoutcomeofthesediscussionstoprovidersandcommissionersonthesameday.

Thesessionwasstructuredaround3mainquestions,whichserviceusersthendiscussedinsmallgroupsduringthemorning.Feedbackfromthemorningdiscussiongroupsfollowedlunchandtheeventclosedwithageneraldiscussionsession.

Thedaywasperceivedbyserviceusers,providersandcommissionerstobeaparticularlyvaluableexperienceinbringingpeopletogether.Itenabledanopenandhonestdialoguetotakeplaceinanattempttobreakdownbarrierswhilstalsoseekingacollectiveagreementtobemoreproactiveinfuturerecognisingthecontributionthatserviceuserscanmaketothedevelopmentofservices.

ServiceUserInvolvement:EngagingChildrenandYoungPeople

FlintshireSortedisaneedsledorganisationdriventowardsminimisingtheimpactofalcoholandsubstancemisuseonyoungpeople(YP),theirfamiliesandthecommunity.Inordertoensuretheorganisationis‘childcentred’,FlintshireSortedactivelyengageYPinprocessestoensuretheyprovideaservicethatis“LedbyYPforYP”.

FlintshireSortedhaveinvolvedYPintheevolutionoftheirservicebysettingupasteeringgroupthatmeetsatregularpointsintheyear.TheYPinvolvedhavecomeupwithinnovativeideasincludingrenamingtheserviceandmakingitYPfriendlywhilstaddressingissuessuchasstereotypingandconfidentiality.Theyhavealsocompletedaproject,byidentifyinganissue,researchingtherisksanddangers,planningtheprojectandcreatingaDVDcalled‘YouWon’tAlwaysGetLucky’whichisnowusedineveryHighSchoolandsecondaryeducationprovisioninFlintshireraisingawarenessaboutalcohol.

FlintshireSortedhavealsoinvolvedYPreceivingTier3;one2oneandtherapeuticsupporttobetterdevelopasaservice.Engagementprojectshavebeensetupandcarriedout,utilisingtheinitiativeandskillsofthosealreadyaffectedbydrugandalcohol,aswellasthoserecognisedaslikelytobe.Thishashadmanypreventativebenefitsfortheyoungpeople,thoseclosetothemandtheircommunity.AtargetedgroupofYPthatwereidentifiedasneedingadditionalsupportbytheirschoolhaverecentlycompletedanartisticprojectfromstarttofinish.Thegroupinitiallymetanddiscusseddiversionaryactivitiesthattheybelievedwouldhelpthemmaketherightchoicesovertheschoolholidayperiod.Theydecidedtorenovateanopenspaceatthebackoftheofficeandfollowingabeachthemehavecreatedaremarkableareafortheteamtoworkwithyoungpeople.TheprojectallowedtheYPtogainvaluableskillsinresearch,building,creativeartsanddesign.Italsoprovidedanopportunityforpro-socialmodellingfromworkerstoYPandallowedthemtobuildpositiveadultrelationships.ManyoftheskillsgainedbytheYParetransferabletotheworkplaceandsupportwasonhandtoaidwithapplyingforcollegeandcompletingCVs.

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AnnexesandAppendicesThefollowingannexesarereferredtointheframework:

Annex1.Definitionsofkeyterms

Annex2.10NationalPrinciplesforPublicEngagementinWales

(From‘TheNationalPrinciplesforPublicEngagementinWales’,ParticipationCymru,March2011)

Annex3.ChecklistforServiceUserInvolvement

(adaptedfrom“StrongerInPartnership”–AdultMentalHealthServicesInvolvingServiceUsersandCarersinthedesign,planning,deliveryandevaluationofmentalhealthservicesinWalesPolicyImplementationGuidanceSeptember2004).

Servicecommissionersandproviderscanusethistooltoevaluatethecurrentlevelofserviceuserinvolvementintheirwork.Thelistisnotcomprehensivebutaimstotriggerfurtherconsiderationofhowtoinvolveandconsultwithserviceusers.

Theseappendicesareexamplesoftoolsthatyoumayfindhelpful.

Appendix1.UsefulLinks

Appendix2.SampleCharterforServiceUserInvolvement

(adaptedfrom“StrongerInPartnership”.AdultMentalHealthServicesInvolvingServiceUsersandCarersinthedesign,planning,deliveryandevaluationofmentalhealthservicesinWalesPolicyImplementationGuidanceSeptember2004).

AsampleServiceUserInvolvementCharterwhichincludesdesigningandplanning,commissioning,deliveryandmonitoringofservices.

Appendix3.PersonalQualities

(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority).

Setsoutpersonalqualitiesthatareessentialtosuccessfuluserinvolvementinitiatives.

Appendix4.SkillsRequired

(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority).

Identifiestheneedforprovidinguserswithspecifictrainingtosupporttheminuserinvolvementinitiatives.

Appendix5.SkillsforWorkers

(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority).

Stressestheimportanceofinvestingtimeinskillingupandequippingstafftoworkwithusers.

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Appendix6.InvolvementForums

(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority).

Identifiessomeapproaches,toolsandgoodpracticeforimprovinguserinvolvement.

Appendix7.MappingServiceUserInvolvementActivities

Appendix8.Developingaserviceuserinvolvementstrategyandimplementationplan

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Annex1:Definitions

ServiceUserTheterm‘serviceuser’isusedthroughoutthisguidance,andreferstopeoplewhohaveusedorareusingsubstancemisuseservices.Othertermsusedtodescribethisgrouparejustasvalid,butforconsistencyandeaseofusethetermserviceuserhasbeenusedthroughoutthisdocument.

Throughoutthedocumentthetermserviceuserisusedtorefertopeoplewhomayhaveatonetimeusedasubstancemisuseservice,arecurrentlyusingasubstancemisuseserviceoratsomepointinthefuturemayaccessasubstancemisuseservice.Therefore,forthesakeonconsistency,thetermalsoincludespeoplewhoconsiderthemselves‘ex-serviceusers’.

Pleasenote:serviceusersconsistofbothvoluntaryserviceusersandthosewhoaccessservicesasaresultofacriminalconvictionoraconditionofdischargearrangementsfromcustodyaspartofaparolelicence.

SubstanceMisuseServicesTheterm‘substancemisuseservices’or‘services’isusedthroughoutthedocument.Itreferstoallservicesthatprovidesupportortreatmentforsubstancemisuseproblems.Thetermincludesallorganisationsaimedatpreventingortreatingsubstancemisuseoratsupportingrecovery.Thetermcoversstructuredandunstructuredtreatment,aswellasprimarycare,secondarycareorcareprovidedbythethirdsector.

InvolvementTheterm‘involvement’isthefocusofthisguidanceandisusedthroughout.Thetermisusedinabroadsensetocoverbothactive,ongoingjointworkingandtrueandfullparticipation(activelytakingpartin)andtheconsultationprocess(lookedtoforinformationandadvice).However‘involvement’meansworkingtowardsandaspiringtofullparticipation.

ParticipationParticipationisbasedonempoweringtheindividualtoregainmorecontrolovertheirlives,developtheircapacity,confidenceandselfesteemand‘addvalue’inhelpingtocontributepositivelytoimprovingthelivesofothers.

RecoveryRecoveryfromproblematicdrugoralcoholuseisdefinedasaprocessinwhichthedifficultiesassociatedwithsubstancemisuseareeliminatedorsignificantlyreduced,andtheresultingpersonalimprovementbecomessustainable.

CarerAcarerisanyone,ofanyage,whoprovidesunpaidcareandsupporttoarelative,friendorneighbourwhoneedscareandsupport.

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Annex2:10NationalPrinciplesforPublicEngagement

TheNationalPrinciplesforPublicEngagement(2011)provide10coreprinciplesforserviceuserengagementinWales

1. Engagementiseffectivelydesignedtomakeadifference

Engagementgivesarealchancetoinfluencepolicy,servicedesignanddeliveryfromanearlystage.

2. Encourageandenableeveryoneaffectedtobeinvolved,iftheysochoose

Thepeopleaffectedbyanissueorchangeareincludedinopportunitiestoengageasanindividualoraspartofagrouporcommunity,withtheirviewsbothrespectedandvalued.

3. Engagementisplannedanddeliveredinatimelyandappropriateway

Theengagementprocessisclear,communicatedtoeveryoneinawaythat’seasytounderstandwithinareasonabletimescale,andthemostsuitablemethod/sforthoseinvolvedisused.

4. Workwithrelevantpartnerorganisations

Organisationsshouldcommunicatewitheachotherandworktogetherwhereverpossibletoensurethatpeople’stimeisusedeffectivelyandefficiently.

5. Theinformationprovidedwillbejargonfree,appropriateandunderstandable

Peoplearewellplacedtotakepartintheengagementprocessbecausetheyhaveeasyaccesstorelevantinformationthatistailoredtomeettheirneeds.

6. Makeiteasierforpeopletotakepart

Peoplecanengageeasilybecauseanybarriersfordifferentgroupsofpeopleareidentifiedandaddressed.

7. Enablepeopletotakeparteffectively

Engagementprocessesshouldtrytodeveloptheskills,knowledgeandconfidenceofallparticipants.

8. Engagementisgiventherightresourcesandsupporttobeeffective

Appropriatetraining,guidanceandsupportareprovidedtoenableallparticipantstoeffectivelyengage,includingbothcommunityparticipantsandstaff.

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9. Peoplearetoldtheimpactoftheircontribution

Timelyfeedbackisgiventoallparticipantsabouttheviewstheyexpressedandthedecisionsoractionstakenasaresult;methodsandformoffeedbackshouldtakeaccountofparticipants’preferences.

10.Learnandsharelessonstoimprovetheprocessofengagement

People’sexperienceoftheprocessofengagementshouldbemonitoredandevaluatedtomeasureitssuccessinengagingpeopleandtheeffectivenessoftheirparticipation;lessonsshouldbesharedandappliedinfutureengagements.

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Annex3:ChecklistforServiceUserInvolvementServicecommissionersandproviderscanusethefollowingtooltoevaluatetheircurrentlevelofserviceuserinvolvement.Thelistisnotcomprehensivebutaimstotriggerfurtherconsiderationandinnovationsurroundinghowtoinvolveandconsultwithserviceusers.

CommissioningandPlanningStructures Assessment

Doesyourpartnershipactivelyseektoinvolveserviceusersinitswork?

Hasyourpartnershiporgroupconsidereduserinvolvementwhendevelopingitstermsofreferenceandstructures?

Isserviceuserinvolvementsolelymeetings-basedorareothermechanismsemployedtoengagewitharangeofserviceusers?

Isinformationonthestructureandaimsofthepartnershiporgroupreadilyavailabletoserviceusers?

Docommissionersandplannershaveaclearunderstandingoftheimportanceofuserinvolvement?Isthisdemonstratedinpractice?

Areserviceusersinvolvedintheneedsassessmentprocess?

Areserviceusersinvolvedinthedevelopmentofservicespecificationstomeetidentifiedneed?

Arethereopportunitiesforserviceuserstobeinvolvedinthecommissioningorprocurementprocess?

Areserviceusersinvolvedinthemonitoringandevaluationofservices?Arethereclearandrobustcomplianceandwhistleblowersproceduresinplace?

Isperformanceandactivityinformationfedbacktoserviceusers?

Arechangesanddevelopmentsreportedtoserviceusers?

Wouldcommissionersacceptthefindingofuser-ledresearch?

Arethereregularopportunitiesforserviceuserstoprovidefeedbackonserviceseitherasanindividualorasagroup?

Docommissionersallocateresourcestosupportserviceuserinvolvement?

Areserviceusersregularlyaskedhowtheywouldliketobeinvolvedincommissioning?

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CommissioningandPlanningStructures Assessment

Doyouregularlyreviewyourapproachtoserviceuserinvolvement?

Meetings Assessment

Aremeetingsheldattimesandinlocationsthatareaccessibletoandappropriatetoserviceusers?

Areyourmeetingspromotedinareaswhereserviceuserswillbe?

Areallmeetingpaperssentoutatleastoneweekinadvanceofallmeetingsandissupportofferedpriortomeetings?

Meansofparticipation Assessment

Hasarangeofparticipationmethodsincludingtheuseofnewtechnologyandsocialmediabeenconsidered?

Areminutesofyourmeetingsreadilyavailabletoserviceusers?

Areyouabletoprovidetrainingandsupporttoserviceuserswishingtoparticipateinmeetings/events?

Areyouabletogiveenoughtimeforserviceuserstoprepareformeetings/events?

Doyousupportserviceusersbymeetingtheiroutofpocketexpensesincurredthroughattendingmeetings/events?

Doyouusejargonandtechnicaltermsinyourmeetings/events?

Domeeting/eventattendeeshaveaclearunderstandingoftheimportanceofserviceuserinvolvement?

Doyouusemeansofcommunicationotherthane-mail?

Isthestructureandcultureofyourmeetings/eventssuchthatserviceuserswillfeelabletocontribute?

Isitcleartoserviceusersthatitistheirdecisionstoattendmeetings/events?

HavetheneedsofWelshspeakersbeenconsidered?AretherearrangementsinplacetospecificallyengagewithWelshspeakers?

Haveyouconsideredthelanguageneedsofallserviceusers?

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ServiceProviders Assessment

Doyouhaveaserviceusercharter?

Isinformationonhowtomakecomplaintsorpaycomplimentsmadeavailabletoserviceusers?

Arestafftrainedindeliveringclientcentredsupportandinvolvingserviceusersintheircareplans?

Areclientsabletoaccessadvocacysupport?

Areserviceusersinvolvedinthestaffrecruitmentprocess?

Arethereregularopportunitiesforserviceuserstoprovidefeedbackonserviceseitherasanindividualorasagroup?

Isthereregularinteractionbetweenserviceusersandseniormanagement?

Areserviceusersawareofwhothecommissionersoftheserviceareandhowtheycanescalateanyconcernstothecommissioners?

Areserviceusersinvolvedinthedevelopmentandreviewoftheircareplans?

Areserviceusersinvolvedwhenchangesaremadetotheservicebasee.g.redecorationorrenovation?

Areserviceusersinvolvedwhenchangesaremadetothestructureoftheservicee.g.openingtimes,staffstructures,outofhourssupport?

Areserviceusersorex-serviceusersinvolvedonyourboardofmanagement?

Doserviceusershavetheopportunitytousetheirskillstosupportthedeliveryoftheservicee.g.peersupport,befriendingatdrop-in?

Areserviceusersinvolvedinbudgetsettingormanagement?

Arethereopportunitiesforserviceuserstorepresenttheorganisation?

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Meansofparticipation Assessment

Doyouoperateanypeereducationoruserledassertiveoutreachschemes?

Doyouinvolveserviceusersinthedeliveryofharmreductionmessages?

Istheadviceofserviceuserssoughtwhenseekingtoworkwithspecificgroupse.g.blackandminorityethnicgroups,stimulantusers?

Areserviceusersaskedhowtheywouldliketobeinvolvedinservices?

Areserviceusersinvolvedintheinductionorgeneraltrainingofstaff?

Areserviceusersinvolvedintheinductionofnewserviceusers?

Doyouadvertiseandpromoteserviceuserforums?

Areserviceusersinformedoftherangeoftreatmentoptionsavailabletothem?

Areserviceusersencouragedtotakeaproactiveleadinthedevelopmentandreviewoftheirowncareplan?

Doyouregularlyreviewyourapproachtoserviceuserinvolvement?

Doyouhaveappropriatemechanismsinplacetoengagewithserviceuserswithdiverseneeds;childrenwithyoungpeople;expectantmothersandfamiliesandcarers?

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Appendix1

UsefulLinkswww.dan247.org.uk/

www.nta.nhs.uk

www.aidslaw.ca/publications/publicationsdocEN.php?ref=67

www.awsum2012.org/

www.wales.gov.uk/topics/people-and-communities/safety/substancemisuse/?lang=en

www.wales.nhs.uk/sitesplus/899/home

www.wales.gov.uk/docs/dhss/publications/131023substanceframeworken.pdf

www.participationcymru.org.uk/

www.wedinos.org/

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Appendix2

SampleCharterforServiceUserInvolvement

DesignandPlanningofServices

Involvingserviceusersintheprocessofplanningservicesshouldleadtoservicesthataremoreresponsivetotheneedsofpeoplewhousethem.

Personalplanningofservices

Serviceusershavearightto:

• Befullpartnersintheplanningfortheirownserviceneedsandinthedesignanddrawingupoftheirowncareplans.

• Haveaccesstoindependentadvocacy.

• Bepresentwhentheirneedsareassessedandtheirservicesplannedandreviewed.

Jointplanningandcommissioningofservices

Serviceusershavearightto:

• Betreatedasfullandequalpartnerswithintheplanningprocess.

• Besupportedduringmeetings.

• Havemeetingsheldinanappropriateformat,includingtheuseoftechnologyandsocialmediawhereappropriate,atappropriatetimesandinappropriatevenues.

• Haveothermechanismsavailableforensuringeffectiveinvolvement,e.g.representativesofplanninggroupsvisitinguserandcarermeetingstoobtainviews.

• Beinvolvedintheformalprocessesforgatheringtheviewsofserviceusersandcarersseparatelyandseeingthemintegratedintotheplanningstructure.

• Receiveremunerationforexpensesincurredduringinvolvementinplanningprocesses.

• Receiveinformationingoodtimetoenableeffectiveconsultation.

• Receivequalitytraining.

• Haveclearlyagreedrolesandresponsibilities.

• Bekeptinformedabouthowtheircontributionshaveinfluencedplanningandservicedelivery.

ServiceDeliveryandMonitoring

Serviceuserinvolvementinthedeliveryandmonitoringofserviceswillmakeservicesmoreresponsivetoneed.

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Serviceusershavearightto:

• Betreatedasfullandequalpartnersandfullyinvolvedinthedeliveryofservices.

• Beinvolvedintherecruitmentandinductionofstaffasappropriateandbesupportedtodoso.

• Havetheirviewstakenintoaccountandbeprovidedwithfeedbackiftheyarenotsatisfiedwithservicesoffered.

• Bemadeawareofalternativeserviceswheretheseexist.

• Beinformedofhowtomakeacommentorcomplaintandhavethemfedintothemonitoringandevaluationprocess.

• Begiventheopportunitytoinformserviceprovidersofwhetherornottheiridentifiedneedsarebeingmet.

• Beinvolvedinthedesignandcollationofmonitoringandevaluationproceduresandbeinformedoftheresultsofmonitoringandevaluationofservices.

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Appendix3

PersonalQualities(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority)

Someapproaches,toolsandgoodpracticeforimprovingdruguserinvolvement.

Oneofthemostsignificantfindingsofthisprojectistheidentificationofspecificpersonalqualitiesthatareessentialtosuccessfuluserinvolvementinitiatives.Interviewswithprofessionalsanddruguserswhohadplayedpioneeringrolesinthefieldshowedthattheysharedkeypersonalqualities:

• Energy–thekeyactivistsscoredhighlyinanenergyauditscoresheet.TheworkinLambeth,inparticular,showedthatpeoplewithhighlevelsofenergyarelikelytolastthedistanceindevelopingprojects.

• Beliefinacommongood–theactivistsinterviewedshowedastrongsenseofnotonlybeinginterestedinmakingthingsbetterforthemselvesbutforotherusersaswell.

• Solutionfocused–manypeopleareawareoftheproblemsthattheyandothersface,however,onlyafewrelatetoorfocusonsolvingthem.

• Senseofpersonalresponsibility–theactivistsdistinguishedthemselvesbyseeingthemselvesaspartofthesolution.

• Focusonresults–theymeasuredprogressbyresultsachieved,ratherthantheprocessusedtogetthem.

SkillsSomemodelsofuserinvolvementthatwereexploredduringtheprojectshowedthatbothusersandstaffneedtobegeared-upforinvolvementtoworksuccessfully.Thecoreskillsneededmaybedifferentinthetwogroupsandmayalsovaryfromoneorganisationalcontexttoanotherandbetweenoneuserandanother.

EquippingusersDrugusershaveoftenbeenviewedasunreliable,incapableoforganisingthingswell,orunabletomanageresourceseffectivelyandcompetently.Workonthisprojectchallengedtheseviews.Drugusersareanextremelybroadanddiversegroupdisplayingawiderangeofskillsandcompetencies.Therearemanyexamplesofwell-runandsuccessfuldruguserledinitiatives.

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Appendix4

SkillsRequired(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority)

Someapproaches,toolsandgoodpracticeforimprovingdruguserinvolvement.

NewskillsThisprojectidentifiedtheneedforprovidinguserswithspecifictrainingtosupporttheminuserinvolvementinitiatives.Thetrainingshouldsupportindividualswhomaynotbeaccustomedtoworkinginorganisationalorprofessionalcontexts.

Trainingonorganisationalissuesshouldincludethefollowing:

• Basicfinanceandbudgeting.

• Approachestoplanningandstrategydevelopment.

• Meetingsandcommunications,includingminute-takingandchairing.

• Basicunderstandingofnationaldrugstrategies.

EquippingtodeliverThisisanexcitingareaofskillsdevelopment;successfulservicedeliverybyusersisapowerfulweapontocounterthenegativeperceptionsandgeneralisationsthatexistaboutdrugusers.

Examplesofsuccessfulservicedeliveryinclude:trainingandequippinguserstoconductModelsofCaremappingwork;engaginguserstodevelop,manageanddeliverasmallscaleRealTimeCommunityChangeproject;involvingserviceusersindeliveryofpeertopeertraininginharmminimisation.

Someoftheskillsneededforservicedeliveryareoutlinedabove;theseadditionalonescouldalsobeconsidered:

• Informationandresearch–improvedknowledgeofbasicresearchskillsandmethodologiescanhelpusersbidforandruneitherfullresearchprojectsortheircomponents.

• Trainingandeducation–usershaveavitalroletoplayineducatingbothotherusersandprofessionals.Developingandimprovingpresentationskillsanddeliveringqualitytrainingareimportantinfurtheringthis.

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Appendix5

SkillsforWorkers(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority)

Someapproaches,toolsandgoodpracticeforimprovingdruguserinvolvement.

EquippingstaffandagenciesMuchemphasishasbeenplacedonequippingusers.JBentley,fromtheAlcoholRecoveryProject,stressestheimportanceofinvestingtimein‘skillingup’andequippingstafftoworkwithusers.

Itisimportantnottounderestimatethedegreeofattitudinalchangeneededwhenstaffandorganisationsareaskedtorelatetodrugusersinentirelydifferentways.

Stafftrainingareastoconsiderare:

• Consultationandinforming.ConsultationisoneofthefirststepsonArnstein’sladder.Staffneedtobeskilledinthedifferentapproachesandtechniquestocollatinganddisseminatinginformationandfeedbackfromusers.

• Educatingandencouragingpeers.Staffleadinguserinvolvementinitiativesneedtocommunicatewithcolleaguesaboutthereasonsforandbenefitsofuserinvolvement.

• Mentoring.Duringtheprojectseveraluseractivistsidentifiedtheimportanceofthementoringandsupporttheyhadreceivedfromstaffmembers.

MakeprogressDrugusersarestillanexcludedgroup.ManyuserinvolvementinitiativesarestillattheinformationandconsultingstagesofArnstein’sLadder.Investmentandcommitmenttotrainingofbothusersandagenciesisthereforevitalinmovingfromthisstage.

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Appendix6

InvolvementForums(From“LessonsLearnt”,LondonDrugUserInvolvementProject,GreaterLondonAuthority)

Someapproaches,toolsandgoodpracticeforimprovingdruguserinvolvement.

Intheprojectpilots,forumswerefoundtobepopularwaysoffurtheringdruguserinvolvement.Theirflexibleandopennaturesuitedtheexploratoryanddevelopmentalapproachtouserinvolvement.

Forumscananddoworkwellandareagoodmeansto:

• opendialogueandbuildrelationshipsbetweendifferentgroups;

• keepusersinformed,especiallythosewithouteasyaccesstoe-mailortelephone;

• allowindividualstohavedifferentdegreesofcommitmenttouserinvolvement;

• encouragingmemberstovoiceconcernsorairviewsinacontextremovedfromdirectserviceprovision.

ForumsandArnsteinUserinvolvementstrategiesthataresolelybasedonforumsarelocatedaroundthelower(consultationandinformation)rungsofArnstein’sLadderofParticipation.

Usersareattractedtoinvolvementactivitybydifferentissuesandtheycharacteristicallyhavedifferentlevelsofcommitmentandexpectations.Itisthereforeimportanttorealisethatforums,bythemselves,cannotmeettheneedsandexpectationsofallusers.

Itispossibletoidentifythreedistinctgroupsofusers:

•GroupAAgrouphighlycommittedtouserinvolvementandverykeentobeinvolvedinfurtheringit.

•GroupBAgroupthatagreesinprinciplewillfollowastrongleadandmayalsobepreparedtogivealimitedamountofenergytofurtheringinvolvement.

•GroupCAgroupresistanttouserinvolvementwhoarenotwillingtocontributeinanysignificantway.

TheforumapproachworkswellwithusersofGroupB,wherethereisnotsignificantcommitmentbutusersarekeptinformedandaregiventheopportunitytocommunicateaboutissuesthataffectthem.Usedinisolation,forumsarelesslikelytobeeffectivewithpeopleinGroupsAandC,wheredifferentapproachesmaybemoreappropriate.

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Appendix7

MappingServiceUserInvolvementActivities

Establishwhatgroupsofpeoplearebeingconsidered

Identifywhatlocalservicesandforumsarethereforthisgroup

Decidewhatinformationisneededandwhatwillbedonewithit

Agreehowwillthisinformationbecollectedandbywhom

Consideranybarriersorpotentialdifficultiesincollectingthisinformationandhowtheycanbeovercome

Commitadequatetimeandresourcestocarryouttheconsultation

Conductthemappingexercise

Compilefindingsinappropriateformatsfortargetaudiences

Feedbackthefindingsandanyresultingactions

Reviewthesuccessoftheexercise

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Appendix8

DevelopingaServiceUserInvolvementStrategyandImplementationPlan

Securecommitmentfromstakeholdersincludingprovidersandcommissioners

Identifystrategicaimsandobjectives

Considerthelocalandnationalcontext

Reviewoutcomesofmappingexerciseandidentifypriorities

Communicateprioritiestostakeholders

Establishmilestonesandtimescales

Identifyleadperson/organisationformilestones

Ascertainresourceimplications

Assesstrainingrequirements

Presentstrategyandimplementationplaninformatsappropriatetotargetaudiences

Implement,monitorandreview