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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
7.DefininganEthicalFrameworkforUserInvolvement:
ServiceUsers’RecommendationsforSupportsand
StructurestoAssistEqualInvolvement
7.1Introduction
Aspreviouslydiscussed,organisationsinvitingmentalhealthserviceusersinto
involvementhaveadutytoprotectserviceusersfromharmintheprocess.
Thissectionoutlinestherangeofsupportsthatparticipantsidentifiedtoassist
theirequalparticipation. Thesupportsaddressthesixdimensionsofinequality
thatpeoplewithexperienceofusingmentalhealthservicesface:cultural
resources,physicalandmentalresources,respectandrecognition,economic
andtimeresources,power,andtheneedforemotionalsupport.
7.2Addressingunequalculturalresources
Participantsidentifiedarangeofwaystoaddresstheirunequalcultural
resources:

Training
Trainingwassuggestedby6participants,3leadersand1pilot
interviewee. Itwasalsorequestedbytheparticipantgroupatthe
introductoryworkshop. Thisledtothedevelopmentofapilottraining
programmeinwhich13peopleparticipated(McDaid2005). Theskills
areasidentifiedwere:
o Howcommitteesoperate(includingcommitteerulesand
procedures,andtheunwritten‘rulesofthegame’)
o Howtoreadandanalysepolicydocuments
o Howtogatherevidencetosupportyourcase,includinginternet
searchingandidentifyingusefulresources
o Howtonegotiate
o Computerskills
o Writingskills
o Howtopreventburn-out

Clarifyingtechnicallanguageduringthemeeting.Oneparticipantand
twoleadersmentionedhowtheywouldseekclarificationofunknown
languageduringameeting. Itisimportantthatmeetingchairpersons
provideopportunitiesfortermstobeclarified. Itwasalsosuggestedthat
serviceusermembersbeprovidedwithaglossaryofterms,e.g.CMHT
meansCommunityMentalHealthTeam.
“AskingforinformationtobegiveninplainEnglish,andduringameeting,
forstatementstobemadeinplainEnglish”
(Introductoryworkshopgroupdiscussion)
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62

Providingaccessibleinformation. Participantsinthepilottraining
programmewithexperienceoncommitteesraisedtheneedforclearand
conciseinformationabouttheissuesunderdiscussiononthecommittee.
Participantswantedsummarisedinformation,andinformationin
straightforwardlanguage.
“KISS–KeepItSimpleStupid”
(Pilottrainingprogrammegroupdiscussion)

Providingenoughbackgroundinformationtobeabletoparticipate.
Participantsalsosoughtbackgroundinformationonthetopicsunder
discussion,suchastherecenthistoryofthepolicy,previousdecisions
madeandtheevidence(priorpolicydocumentsandresearchreports)on
whichpolicyhadbeenmade.

Mentorsandpeergroupsasculturalresources. Oneleaderdescribed
howaserviceuserwouldvaluebeingabletoseekinformationfromtheir
peergroup. Anotherleaderdescribedthevalueofallysupport,atypeof
‘personalassistant’toexplainwhatwasgoingoninthemeetings. Both
mechanismsshouldbeofferedtoanyserviceusercommitteemember,
notonlyatthebeginningoftheirparticipationbutonanongoingbasisso
thattheycandrawontheaccumulatedculturalresourcesofpeersand
alliesinordertoinformtheirparticipation.
“Ithinkthevalueofthegroupisthesupportyoucangetfromthegroup
thatifyou’reunsureaboutsomething,youcancallandfindout,youknow,
youcangetinformation.”
(Maleleader,aged52)
“WhenIlookbackandifIhadhadsomebodylikeyouasamentor,
somebodywhoIcouldgotoifIwasconfusedaboutthissituation,interms
ofpolicy,intermsofhowsocietyworksandoperatesandhowboards
operate,thatwouldhavebeenofgreatbenefittome.”
(Maleleader,aged40)

Termsofreference. Allmembersofacommitteeshouldbeprovidedwith
thetermsofreferenceforthecommittee. Thisisgoodpractice,butitis
particularlyimportantforserviceuserswhomaynothavetheothercultural
resourcesneededtointerpretthecommitteeproceedings. Termsof
referenceshouldspecifythepurposeandscopeofthecommittee,its
decision-makingauthorityanditsleadershipstructure. Theyshouldalso
specifyadesignatedliaisonpersonwithintheorganisationtowhom
serviceuserscanspeakiftheyarehavingdifficultyonthecommittee.
Participantsalsorequestedinformationonthebackgroundandpositions
ofothermembersofthecommittee.
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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7.3Addressingunequalphysicalandmentalresources
Someparticipantsemphasisedtheneedtoincorporatebreaksduringmeetingsin
ordertoaccommodatetheirlesserstaminaandconcentrationlevels.
“Justgivelotsofbreaks,because,peoplewithself-experience,their
concentrationisn'tgreat.”
(Maleparticipant,aged36)
Threeleadersalsorecommendedthatstructuresbeputinplacetoallowa
serviceusertoresignortakeabreakfromacommittee. Thismaybeneededto
accommodateaperiodofmentaldistress,orifthecommitteesituationitself
becomesundulystressful. Theideaofhavinganalternatewasalsosuggested.
Thiswouldenablecontinuedrepresentationofaserviceuserperspective
regardlessofthewellnessofanyoneappointee.
“Ithinkeverybodyshouldhaveprotectionfromharmbutthereneedstobe
thespacetobeabletooptout. Thatneedstobebuiltin. Peoplemight
havegooddaysandbaddaysandallowancesneedtobemadeforthat
butthatneedstobemadeforeverybody. Everybodycanhaveabad
day.”
(Femaleleader,aged44)
“Ithinkthatifthere’saverybad,negativeenergygoingon,it’sprobably
besttogoawayfromit,youknow,becausethisisn’tproductiveanyway
becauseifthere’stoomuchfightinggoingon,Imean,youcan’thavetoo
muchhappening ifyou’rehavingmeetingsandmostofitisfighting. . What
areyougoingtogetoutofitanyway.”
(Femaleleader,aged59)
7.4Addressingunequalrespectandrecognition
Theevidencefromtheinterviewsdemonstratesthenegativeimpactofboth
societalandmentalhealthsystemprejudiceonserviceusers’abilityto
participate. Socialstigmacaninhibitpersonswithexperiencefromspeakingin
public.Mentalhealthprofessionals’negativeattitudescandeterserviceusers
fromspeakingupincommitteemeetings. Ifuserinvolvementistohaveany
moralvalidity,itmustaddressthesebroaderissuesofsocietalandmentalhealth
system‘stigma’. Asimplepositivemeasurewouldbetoensurethatstigmais
addressedasanagendaitemoncommitteeschedules,buttoensurethatsucha
mechanismiseffective,itmustbeunderpinnedbyabroaderprogrammeto
changepublicattitudes. Brosnan(2006)recommendsthat:
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
“Dignity,respectandequalityshouldbethecornerstoneofdeliveryof
mentalhealthservices. Thesevaluesshouldbeincorporatedintoavision
statementfortheserviceswithinthereformedHSEstructuresandbuilt
intotheserviceplanningprocess.”
(p.38).
Participantsinthisresearchalsosupportedtheneedforanethosofrespect
withinmentalhealthservices:
“Ithinkpeoplemightneeddifferentthings,butifsupportsareofferedfor
trainingandsupportingpeopleintheprocessofgrowthofconfidence
that’snecessarytofindone’sownvoiceandtovaluetheexperience,the
perspectivethatpeoplewithexperiencecanbring,solearningtovalue
thatthroughthesupportofpeoplewhobelieveitalreadywasvitalforme.”
(Femaleleader,aged44)
“Andthen-beingonacommitteewithprofessionalssharing,whatarethe
challengestoyou-andIsaid-thatIberespected,thatIbeseenasa
personwithideasandacontributionlikeanybodyelseonthecommittee.”
(Maleparticipant,aged50)
Mentalhealthservicesatlocal,regionalandnationallevelsneedtoleadon
changingpublicattitudesthroughprominentpublicmessages. Theyshouldbe
supportedbyclearpublicleadershipfromGovernment. Theyalsoneedto
developspecificprogrammestoaddressthestigmaperpetuatedbymental
healthserviceproviders,bothstatutoryandnon-statutory. Implementingthe
‘recovery’approachtomentalhealthcarewhichseespartnershipasacoreethos
andprioritisestheexpertiseofpeopleregardingtheirownrecoveryfrommental
distressisonewaytomoveawayfromthecultureofdependencycurrently
persistinginsomeareasofthementalhealthservices(seeMentalHealth
Commission2005). Ultimatelysuchanethoswillonlysucceed,however,ina
systemwhichdeliversknowledgeandpowertopeoplewithadiagnosisto
determinetheirowntreatment.
7.5Addressingunequaleconomicandtimeresources

Negotiatingafairpaymentforparticipation. Theissueofpaymentwas
raisedbyoneparticipant,oneleaderandonepilotinterviewee,aswellas
intheintroductoryworkshop. Demographicinformationobtainedfrom
participantsshowedthattheiraverageincomeislowbyIrishstandards.
Amongst11intervieweeswhoansweredtheincomequestion,6hadan
annualincomeoflessthan
12,000.
However,oneparticipantalsoquestionedwhetherbeingpaidmight
changethemotivationofaserviceuser’sparticipation.
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
“IfIwasbeingpaidI'dgetgreedyandImightnotputasmuchintoit,I'dbe
initforthemoneythen. I'drathergooutanddoit,andifthere'smoney
there,admittedly,I'd,ifitwasthereandtheywereofferingittomeI
wouldn'tsayno,admittedly.”
(Maleparticipant,aged19)
TheNationalDisabilityAuthority’sStrategicPartnershipGuideforworking
withpeoplewithexperienceofmentalhealthdifficultiesrecommendsthat
paymentforparticipationbenegotiatedaspartofestablishingthe
partnership(NDA2005). Evidencefromthisresearchsupportsthis
recommendation.

Valuingandaccommodatingparticipants’time. Twoparticipantsin
full-timeemploymentdiscussedtimeasaconstrainttoinvolvement. One
participantsaidthatshewouldonlyparticipateifitdidnotbecometoo
time-consuming. Anotherdescribedhowhehadchosennottoparticipate
atnationallevelduetothetimerequiredforlong-distancetravel. Itis
thereforeimportanttoenableserviceusers,especiallythosewhoarein
full-timeemployment,tohavesufficienttimetoenabletheirparticipation.
Itisalsoimportantfororganisationstorecognisethevalueofparticipants’
timeandusetheirtimeefficiently.Asnotedabove,Bakeretal.(2005)
recommendastructuretoenableemployeestobesupportedtoparticipate
indemocracyintermsoftheirtimeinasimilarwaytothatallowedforjury
service. Evidencefromthisresearchgroupcorroboratestheneedfor
suchstructuredsupportnotonlyforemployeesbutalsoforpeoplewith
caringresponsibilities.
7.6Equalisingpower
Participantsandleadersmadearangeofsuggestionstoimprovethebalanceof
powerwithinthecommitteesituation. Theseinclude:

Beingputinapositionofauthorityonthecommittee

Havinganopportunitytoframetheagenda

Havingmorethanoneserviceuseronthecommittee

Havingaregular,designatedtimeslotforserviceuserinput
“SoIturnedaroundandIsaidtothemthatIreallyfeltthatasub-committee
wouldbeagoodidea,andtoconsiderratherthanhavingonepersonsitting
thereontheboard,tohavetwopeoplewithdisabilities.”
(Maleparticipant,aged42)
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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7.7Addressingtheneedforemotionalsupport
Participantsandleadersrecommendedpeer,familyandallysupportsfor
participation.

Familysupport.Oneleaderrecommendedfamilyandfriendsupportas
anaidtoparticipation,whiletwootherleadersnotedtheimportanceof
familysupportfortheircontinuedparticipation.

Peersupport:Participantsinthepilottrainingprogrammecalledforthe
availabilityofpeergroupstosupportparticipation. Aleaderhighlighted
thevalueofpeersupportespeciallyforpeoplestartingoutoncommittees:
“Sometimesyoufeelafool,youknow,uhm,andit’shardattimes,you
know,peoplewillbeembarrassed,peoplewillsaythingsthattheydon’t
knowordon’tunderstand. Yeah,thereisadangerthere,soIthinkmaybe
atthestartthatit’simportanttohavegroups,sothatifyou’rerepresenting,
anditneedstobeaverynon-judgmentalarena,sothatyoucangoback
tothemandsay,so,folks,Ireallyf*****upattoday’smeeting,youknow.”
(Maleleader,aged52)
Anotherleadercalledformuchmorewidespreaddevelopmentofpeer
forumstoenabledebateamongstserviceusers:
“Isuppose,alotmoresupportandalotmoreopportunitiestodiscuss
thingswithpeople. Havingserviceuserforums. IftheHSEsetupthese
usercouncilstherewouldbealotmorehealthydebate. Ithinkthat’sa
majorlackintheIrishsituationthattherearen’tforumsforpeopletoget
together,apartfromtheIrishAdvocacyNetwork.”
(Femaleleader,aged44)

Allysupportandencouragement:Threeparticipantsandfouroutoffive
leadersidentifiedthevalueofallysupport,meaningthesupportofmental
healthandotherprofessionals. Forsomethishadtodowiththevalueof
theinformationthatprofessionalscouldprovidetoserviceusers. More
often,leadersspokeabouttheimportanceoftheencouragementtheyhad
receivedfromalliesduringtheearlystagesoftheirinvolvement.
“Encouragingpeopleandfosteringasenseofself-beliefinpeopleisreally
important…”
(Femaleleader,aged44)
Oneleaderdefinedthevalueofanallybutstatedthatthisroleneeded
furtherworkingout.
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
WhatIwouldsayisthatIdon’tthinkit’sreallyworkedoutproperlyin
termsofsupportingmentalhealthserviceuserswhoareoncommittees
andboards.”
(Maleleader,aged40)
7.8SummaryofServiceUser’sRecommendationsandtheCallforan
EthicalFrameworkforUserInvolvement
Fromanegalitarianperspective,issuesofskillsandknowledgeinequalities,
languagebarriers,theneedforgroupsupport,theneedformoreproportional
representationandformoresayindecision-makingandtheneedtoberespected
reflectdeeperinequalities. Theinequalityissuesforserviceuserinvolvement
cannotsimplybewishedaway;theyreflecttheunequalpositionofpeoplewith
mentalhealthdifficultiesinsocietyasawhole,andshouldbeaddressed
coherentlyandcomprehensively.
Inaddition,serviceusersgoingforwardtoparticipatehavearighttobeprotected
fromphysicalandmentalharmasaresultoftheirinvolvement. Professionals
conductingresearchhavelongrecognisedtheneedtooperatewithinagreed
ethicalstandardsinordertoensurethattheirresearchdoesnotcauseharmto
researchparticipants. Yetsuchaviewisrarelyraisedwithregardto
organisationsinvitingserviceuserstoparticipateindecision-making. Service
usersinthisresearchclearlyarticulatedexperiencesofstresswhileparticipating
oncommittees. Thisdemonstratestheneedtodevelopanethicalframeworkfor
userinvolvement. Suchaframeworkwoulddelineatetherangeof
disadvantages/inequalitiesusersmayexperienceintheinvolvementprocess,
andsetoutminimumstandardstopreventharm. Thetypesofinequalityhave
beenindicatedinthisanalysis. Standardsforincreasingequalityandpreventing
harmshouldaddresseachofthedimensionsofdisadvantage,suchasimproving
theeducationalqualificationsofserviceusersandre-trainingprofessionalsto
valueexperientialknowledge,re-balancingpowerrelationsthroughproportional
serviceuserrepresentationandassignedserviceuserauthorityoverdecision-
making,ensuringadequatefinancialcompensationforserviceuserparticipants,
supportingserviceusergroupcapacity-building,providingmentoringsupport,
PlainEnglishdocumentationandarelevantinductionprogramme. Suchan
ethicalframeworkforinvolvementshouldbeapre-requisiteforanyorganisation
invitingserviceuserparticipation,sothatallserviceuserscanparticipatesafely
andeffectivelywithoutunduerisktotheirphysicalandmentalhealth.
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
8.Conclusion
TheappointmentofaserviceuserontotheAreaManagementTeamofevery
localarea,theestablishmentofanationalServiceUserExecutiveandthe
presenceofserviceusersontheMentalHealthCommissionareprofoundsteps
towardgreaterequalityinthementalhealthservices. Discursively,they
representaparadigmshifttowardsinclusivenessandawayfrompaternalism.
Sociopolitically,theyshowanacknowledgmentbysocietythatpeoplewith
mentalhealthdifficulties,likeallcitizens,havearighttobeinvolvedinthe
decisionsthataffectthem. Inthissensetheyrepresentashifttowardsbasic
equalityforpeoplediagnosedwithmentalillness.Butserviceusers’experiences
tellusthatasimpleequalityofpresence(therighttobepresentindecision-
makingforums)willnotensureequalparticipation. Theexperiencesof
involvementdocumentedinthisresearchrevealpracticesoftokenism,
disrespect,lackofinfluence,constraintonspeakinginpublic,ineffectualness,
isolationandstress. Inorderformentalhealthservicestoeffectivelyandmore
equallyinvolveserviceusersinplanning,aradicalshiftofapproachisneeded.
Serviceusersrequiresupports,accommodationsandre-balancedstructuresto
enabletheirfullinvolvement. Suchanethicalframeworkismorelikelyto
promotenotonlythepresenceofserviceusersinplanningstructures,buttheir
empowermentwithinthementalhealthservicesandinIrishsociety.
Furthermore,theirexperienceshavemuchtoteachallofusaboutthegeneral
needforanethicalframeworkforparticipation. Allmembersofacommunity
shouldbesupportedtoparticipateindecision-makingtothemaximumoftheir
capacitywithoutfearofharmorstress. Todenythisistoenshrineademocracy
oftheelite.
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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