substance misuse treatment framework service user involvement · substance misuse treatment...
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Substance Misuse Treatment Framework (SMTF) Service User Involvement
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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