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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
6.TheExperienceofEmpoweringInvolvement
6.1DescribingEmpoweringInvolvement
Atotalof5participants,4leadersand2pilotintervieweesdescribedpositive
experiencesofbeinginvolvedinadvocacy. Thetypesofpositiveexperiences
includedbeinglistenedto,beingtreatedasanequal,beingrespected,being
successful,helpingothersandhavinganimpact.
“SofairlyquicklyIrealisedthattherewasaverygenuineefforttomake
positivechanges,andIthinkpeoplewereopenandreadytolistentowhat
hadbeenreportedinPathways.”
(Femaleleader,aged44)
“Tobequitehonestwithyou,thestrategy,theydidlistentous,theydidlisten
tous,andtheydidtakeonourviews.”
(Maleparticipant,aged50)
“Yeah,becausetheywereverysupportive. Like,weweren’tthereastoken
peoplewithself-experience. Wewereactuallylistenedto,youknow.”
(Maleparticipant,aged36)
Participantstalkedabouttheexperienceofbeinganequalwithprofessionals:
“There[were]definitelypositives. ItmademerealisethatIwasverysimilarto
theprofessionals.”
“Really. Inwhatway? Whywasthatanewthing?”
“Irealisedthattheywereverymuchhuman,theycouldbejustasstupidasI
couldbe. Justbecausetheyhaveadegreeaftertheirnamedoesn’tmean
thatthey’reallbrains. Andalsowebecamegreatfriends,eventhoughwe
foughtwitheachotherallthetime,becamegreatfriends,andwebecamevery
muchateam.”
(Maleparticipant,aged50)
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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Yeah,wewereequalpartners,anditwasn’tjusttobepoliticallycorrect.
Wewererespected.That’swhywewereinvitedontothecommittee. Itwasa
positiveexperienceinthatrespect.”
(Maleparticipant,aged36)
Twoparticipantsspokeaboutthepositiveexperienceofhelpingothers:
“…butIlovedthebitwhereIwashelpingpeople”
(Maleparticipant,aged19)
“Yeah,Ithinkso,becausewhenIwasontheradiowhen____washereshe
saidshegotacallfromsomebodyinDonegalwhohadheardtheinterviewon
MorningIrelandandshewasthrilledthatsomeonehadcomeouttospeak
aboutschizophreniawhohadhadtheillness”
(Maleparticipant,agedmid-40’s)
Theaimofhelpingotherswasalsonamedatthefirstworkshopwithparticipants,
andbythreeparticipantsandtwoleaders,asoneofthereasonstheywouldwant
toparticipate.
Finally,threeparticipants,oneleaderandtwopilotintervieweesdiscussedthe
positiveexperienceofhavinganimpact:
“andsoshetoldherpsychiatristandshegotweanedoffofitandtheanti-
depressant,andshe’sbettertoday. NowIhaven’theardfromherforawhile,
butshegotbetter. Anditwasasaresultofcomingintocontactwith
MindFreedom.”
(Femaleleader,aged59)
“AndIfeltthatIdid,wittinglyorunwittingly,directlyorindirectly,affect__
policyand,unh,nowaywouldIhavesatforfouryearsifIdidn'tfeelIwas
gettingsomewhere. Iwouldhaveleftsooner. . Iwouldn'thavedoneitthat
long.”
(Maleparticipant,aged47)
6.2BecomingEmpoweredthroughInvolvement
Itisevidentfromthequotesabovethatserviceuserscangainfrominvolvement
intermsofexperiencesofbeingrespected,beingtreatedasanequal,helping
othersandhavinganimpact. Asseveralparticipantsstated,thesepositive
experienceswereimportantinencouragingthemtocontinuetoparticipate,in
gainingconfidenceandinfeelingempowered.
“Ithinkthemostrewardingpartofitwasgettingonthetalkshow,andwhenI
wasatschoolIwasthisperson,Iwasbeingbullied,andIwasknownbythe
teacherstobenotdoinganythingwithmylife,andthensuddenlyIhadthis
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
greatself-imageafteraskingthatquestion,andmaybeIcandosomething
aboutthisanditcangetmeplacesandwhynotgoforit.”
(Maleparticipant,aged19)
“YougainconfidencewhenyouappearonT.V.,itmightseembeing
bigheaded,butyoulearnandyougrowandyoumatureandyou'renotafraid
tospeakoutandtospeakupyourself.”
(Maleparticipant,agedmid-40’s)
“Oh,itwasterrific,becauseyoufeltthatpeopleappreciatedyou. People
thoughtthatthiswasagoodthing;itwasgoodforyoutospeakout. Andthis
gavemetheconfidencetodoiteventhoughIwasaveryshyandtimid
woman.”
(Femaleleader,aged59)
“Yeah,yeah,yeah. IfeltIwasgivingavoicetopeoplewhoweren't,you
know,whoweren'tinthesamepositionofknowledgeofadvocacy…soitdid
makemefeelabitmoreempoweredIsuppose,yeah.”
(Maleparticipant,aged45)
“Sopartofitwasgettingusedtothestructuresofthemeetingsandhavinga
voiceandgettingusedtohavingavoice,butalsothisotherpartofgetting
usedtocomingout.”
(Femalepilotinterviewee,aged60)
6.3MediatingFactorsthatcontributetoServiceUsers’Empowerment
Asdescribedabove,serviceusersidentifiedthepracticeandexperienceof
involvementasitselfameanstowardsgreaterconfidenceandempowerment.
Ofthe13peoplewhoparticipatedinthetraining,6statedthattheywouldfeel
capableofspeakingupincommitteemeetings. Howeverfiveofthesesixhadno
priorexperienceofsittingonamentalhealthservicecommitteefromwhichto
basethisassessment. Ontheotherhand,thosewithexperiencepointedouta
rangeofchallengesfortheirparticipationasdescribedabove. Thosewith
experienceofmentalhealthservicecommitteesidentifiedfourfactorsthat
assistedthemtobeabletoparticipateoncommittees:havingadvanced
education,havingprofessionalexperiencethemselves,havingsupportfrom
othersandhavingaconfidentpersonality.
6.3.1Educationenablingempowerment
Oneparticipantwithexperienceonacommitteeandthreeoutoffiveleaders
identifiededucationasaresourcewhichassistedtheirparticipation:
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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“IfoundthatwhenIcameontothecommitteeswithmentalhealth
professionals,well,IsupposeIwasluckyinthesensethatIhadgotten
backeducationatthattime,soIwasn’ttotallyphasedbytheirbeing
professionals.”
(Maleleader,aged40)
“ButIdothinkthattogetthathonoursdegreewiththekindofstart-stop
educationIhadwasmoreofanachievementthanfortheordinaryperson
whohadnoproblems,youknow? Sointhatsensethatwasastarting
pointthatgavemesomethingtosay,well,I’vedoneverywell.”
(Maleleader,aged52)
Aparticipantwithpriorexperienceonmentalhealthservicecommittees
describedhowhisprevioustraininghadgivenhimconfidencetoparticipate:
“Fromtheveryfirstyear,Iwasinvolvedindoing,uhm,presentation
trainingwith_______. He e wasbroughtintotrainafewofus,myselfand
______,todopresentations. Thatwasatremendousboosttomy
confidence,anditjustseemedlikeanaturallinktogoonanddevelop
fromthere.”
(Maleparticipant,aged47)
6.3.2HavingPreviousProfessionalExperience
Twopilotintervieweesrelatedtheirconfidencetotheirprofessionalexperience.
“Ihaveworkexperienceinaprofessionalmanner,asadesignerIusedto
havetoattendalotofmeetingsandmeetalotofpeopleandmeetclients,
soIhavethatprofessionalworkethic,butalsoastreetknowledge”
(Malepilotinterviewee,aged40)
Theimportanceofeducationandpriorprofessionalexperiencearticulatedby
serviceuserleadersindicatesapotentialbarriertoensuringthatserviceuser
committeeparticipantsareindeedrepresentative,intermsofbeingtypical,ofthe
usersofmentalhealthservices. Peoplefromlowerclassbackgroundsare
severaltimesmorelikelytobeadmittedtohospitalforpsychiatricillnessin
Irelandthananyothersocioeconomicgroup(Walsh&Daly2004,p.86). Given
thisfactandtheexperiencesdocumentedhereofthebenefitsofeducationfor
enablingparticipation,thequestionarisesofhowtoensurethattheviewsof
serviceusersfromlowerclassbackgrounds,whorepresentthemajorityof
inpatients,arerepresentedonmentalhealthservicecommittees.
Userinvolvementprogrammesshouldnotignorethecross-cuttingsocial
inequalitiesexperiencedbymentalhealthserviceusers.
6.3.3BeingaConfident,DeterminedPerson
Twoparticipantsandthreeleadersidentifiedtheirpersonalityasasignificant
factorintheirabilitytoparticipate:
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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“I'mfairlyconfidentinmyselfaswell"
(Femaleparticipant,aged38)
“Ididpersonalitytyping…andmyparticulartypeisanaturalbornleader
anyway,likemymothersaid,hejustwalksintoaroomandtakesover.”
(Maleparticipant,aged47)
“Andofcourse,mypersonalityistobeasticker. WhenIstartsomethingI
usuallystickitthrough. OnceIstartsomething,it’smywaythatIwould
liketoseeitfinished.”
(Femaleleader,aged44)
“…andattheendofthedayIsupposeIwasalwaysabitofan
argumentativetypeandmyexperienceofhavingmentalhealthdifficulties
taughtmehowtofightandtostruggleandlearn,youknow,andfight
throughfairlytoughodds.”
(Maleleader,aged40)
Whiletheabilitytoparticipateinadvisoryforumsisaffectedbyarangeofsocial
factorsasidentifiedabove,itisevidentfromdiscussionwithsomeofthe
participantsthattheirinvolvementdependstoadegreeontheirpersonal
characteristicsofdeterminationandleadership. Serviceuserswhodonothave
theseinnerpersonalitycharacteristics,andthoseinwhomtheservicesand
societyhavedamagedtheirconfidence,willneedagreaterlevelofsupportand
encouragementinordertoparticipate. Thisleadstotheneedtobeemotionally
supportedintheprocessofinvolvement. However,itisimportanttokeepinmind
thatsixparticipantsintheresearchgroupfeltfullycapableofparticipating.
6.4Thesignificanceofsupportforempoweringmentalhealth
advocates
Fiveparticipants,fouroutoffiveleadersandonepilotintervieweeidentified
supportasimportant. Thoseparticipantswithexperienceofadvocacydescribed
howemotionalsupportfromvarioussources,familymembers,peergroup
networks,friends,supportiveprofessionalsandallieshadcontributedtotheir
beingabletoparticipate. Twoparticipantsdescribedhowlackofsupportfrom
theirfamilydeterredthemfromtakingupopportunitiesforpublicadvocacy.
6.4.1FamilySupport
Threeoutoffourleaderintervieweesandtwoparticipantsdiscussedthe
importanceofsupportfromfamilyandfriends. Itisparticularlysignificantthat
thosewiththemostexperienceofuserinvolvementspokeabouttheirneedfor
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
familyorfriendsupport.Oneleaderdescribedhowhermoveintoadvocacy
wouldhavebeenimpossiblewithoutthesupportofherpartner:
“…andJim,asyoumetthere,wasfindingithardinthebeginning,butas
timewasgoingonJimwasrealisingwhatwasgoingonaswell. Atthe
beginningitwashardforhim,becauseyousee,hecamewithmeabit
reluctantlyinthebeginning,butastimewenton,withmoreandmore
enthusiasm,andnowhe’snearlymoreenthusiasticthanmyself. Andhe
wouldcomewithmethefirsttimeIspokeandhewastherewithme,and
hewouldspeakwithmeifhewasneeded.”
“Andyouthinkthatyouwouldhavedoneitifyourhusbandhadn’tbeen
supportive?”
“No,no. itwouldhavebeenverydifficult. . Weprobablywouldhavehad
verymajormaritalproblemsanditwouldhavebeenverydifficult.”
(Femaleleader,aged59)
Whileanotherfemaleleaderstatedthatlackoffamilysupportwouldhavebeen
anadditionalbarrier:
“Certainlyhavinghadthesupportofthefamilycouldhavemadesome
thingsabitdifferentforme. Ithinkmyfamilyalsosuccumbedtothewhole
stigmaandtheydidn’thavetheresourcestotakecareoffinancial
problemsthatwerearising.”
“Sotherewasatimewhenyouweren’tgettingthesupportfromyour
family?”
“Yes,butthenitchangedandemotionally,they’reveryaffirmingnowand
quiteproudofhowthingshaveturnedaroundforme.”
(Femaleleader,aged44)
Ayoungparticipantdescribedhowlackofsupportfromhisfamilydeterredhim
fromspeakingoutmoreofteninpublic:
“Igotawholelotmoreopportunitiesandmyfamily,theywerehavingnone
ofit. SoIthinkitwouldhavegonefurtherifIhadofgotsupportoffmy
family,butIhadn'tatthetime,andIstilldon't…”
(Maleparticipant,aged19)
Aparticipantwithexperienceofspeakingtoagroupofprofessionalsdescribed
thefamilyandfriendsupportshegotthroughthatsituation:
“wellmymotherwasoutside,andshewasveryencouraging…and_____
[herpartner]wasveryencouraging.”
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
“Anddidthatmakeadifferencetoyou,orwouldithavenotmadeany
difference?”
“Itdidmakeadifference,becausetheyareclosepeopletellingyouthat
youcandothis…”
(Femaleparticipant,aged38)
6.4.2PeerSupport
Ifsupportbyone’sfamilywasconsideredabaselinenecessitybythosewith
extensiveexperienceofinvolvement,theemotionalsupportgainedfrompeers
wasthemostwidelyidentifiedtypeofsupportrecommendedbyallparticipant
groups. Fourparticipants,threeleadersandonepilotintervieweeidentifiedpeer
supportasvaluable,whilepeersupportwasalsoidentifiedinthefirstparticipant
workshop.
Oneleaderemphasisedtheimportanceoftheencouragementshereceivedfrom
internationally-knownsurvivors:
“IrealisedfromreadingToxicPsychiatrythattherewereawholelotof
survivorsinAmericaandotherplaces,butIdidn’tthinkthatthereweretoo
manyinIreland. AndIthought,Iwanttogetintouchwiththem. Ireally
wantedtofeel-becauseitsoundedreallypowerfulfromthebook,you
know,andIheardmentionofDavidOaks,thedirectorofMindFreedom
International,andIthought,wow,hesoundslikeabrilliantman,and
peoplelikeJudiChamberlin,andallthesepeople,andatthattimeIdidn’t
haveacluehowtousethecomputer,andwehadastudentatthetime
andsheknewhowtouseit,andIaskedher,couldsheputsomethingout
andaskifthereareanysurvivorsoutthere,couldtheygetincontactwith
me,butitdidn’twork. Butinthemeantime,agreatpsychotherapistgotin
touchwithmenamedGregWhite,becauseheheardthattherewereafew
peopleinCorkcomingout,recovering,andsomebodytoldhimaboutme,
sowegottogetherandhetoldmethenaboutMindFreedomInternational,
andatthattimetherewasahungerstrikeoninAmerica. DavidOaksand
someoftheothersurvivors,challengingtheAmericanPsychiatric
Associationtogivetheevidencethatallthesethingsactuallyexist. And,
ofcourse,this,tome,wasfiercelyexcitingthatallthesepeoplewere
actuallygoingoutonhungerstriketoaskthesequestions. SothenIknew
thattherewasactuallyamovementcalledMindFreedomInternationaland
thatyoucouldgetintouchwiththesepeople. Sowithmanyefforts,
becauseourowncomputerwasn’tworkingverywellatthetime,Iwent
downtothelibraryafewtimes,andeventuallyIactuallygotintouchwith
DavidOaks. Andfromthewordgo,again,thismanwasencouragement
alltheway,andhewastheverysameasTerryLynch,andthisman
again,now,heisahugemanintheworldasasurvivorinthemovement,
andIsaid,isn’tthisfantastic-IwasonlyasmallwomanhereinIreland.”
(Femaleleader,aged59)
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
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Anotherleaderdescribedhowpeersupporthelpedhertocopewiththestressof
meetings:
“Partoftheprocessatthattimewasthattheserviceuserswouldmeet
separatelytodiscussissuesabouttheprocess,soatthatmeetingIwould
havehadachancetosoundoffabouthowdifficultthecommittee
meetingswere.”
(Femaleleader,aged44)
Amaleleaderdescribedhowthepeergroupcanbeaback-uptotheservice
useronacommitteebyprovidinginformationandencouragement:
“Ithinkthevalueofthegroupisthesupportyoucangetfromthegroup
thatifyou’reunsureaboutsomething,youcancallandfindout,youknow,
youcangetinformation…intermsofbackup,thehelp,theconfidenceas
well.”
(Maleleader,aged52)
Whiletwopeoplehighlightedtheoverallsupportfrombeinginvolvedwithan
organisation:
“IfeelthatbeinginvolvedwithsomethinglikeSchizophreniaIreland,that
whenyou’repartofanorganisation,withinthatthere’salotofsupport,you
knowwhatImean?”
(Maleparticipant,aged42)
“Idothinkyoushoulddistinguishinyourresearchbetweenprofessional
serviceusers,andbecauseIamaprofessionalIamgettingoutsidehelp
fromtheIrishAdvocacyNetwork(IAN)andtrainingfromIAN,butthevast
majorityofserviceusersarenot.”
(Femalepilotinterviewee,aged60)
6.4.3ProfessionalSupport
Threeparticipantsandfouroutoffiveleaderswithexperienceofinvolvement
alsohighlightedthevalueofsupporttheyhadreceivedfrommedical
professionalsandotherallies. Thiswasrelatedinparticulartotheearly
experienceofinvolvement,whenserviceusersareoftennervousanddauntedby
theexperience. Attheearlystages,thevalueofalliesandpositiveprofessionals
wasdescribedasparticularlyimportant.
“Iwouldn’thavegoneifithadn’tbeenforher[thedevelopmentworker’s]
support. IfIhadn’tgoneinandleftwithherIdon’tthinkIwouldhave
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
takeniton. IfeltthatIhadanally,andsomebodyverysupportiveandshe
constantlypointedouttheimportanceofwhatIwasdoingandthatevenif
Ididn’tspeakthatmyverypresencewasimportant.”
(Femaleleader,aged44)
“…andifIdidn’thavesomebodylikeTerryLynchsupportingmeaswell,
fromtheestablishment. Like,Ifelthewasadoctor,aformerdoctor,andI
neededthingslikethatatthattime. NowIwouldn’tneedthem,butthenI
did.”
(Femaleleader,aged59)
“WhenIlookbackandifIhadhadsomebodylikeyouasamentor,
somebodywhoIcouldgotoifIwasconfusedaboutthissituation,interms
ofpolicy,intermsofhowsocietyworksandoperatesandhowboards
operate,thatwouldhavebeenofgreatbenefittome.”
(Maleleader,aged40)
“Asmostserviceusersdonothaveathirdleveleducation,professionals
havetobuildupourself-esteem,tobuildupcommunicationsskills,to
buildupnegotiationskills,tobuildupanabilitytointerpretwhat’sbeing
saidandwhatother’saresaying,toseethesecommitteesasachanging
tool,awayforward.”
(Maleparticipant,aged50)
“I'msure_____didmentionthefactthatshe'sgivingthetalk…andthe
researchertherehasworked,Ithinkhe'smetheratleastfourtimessince
itwassuggestedthatshewoulddothetalktothegroupofpeoplewith
mentalhealthproblems,anduhm,sosupportisgreat.”
(Maleparticipantaged33)
6.5SummaryofEmpoweringInvolvement
Itisclearthatinvolvementcanbeanempoweringexperienceformentalhealth
serviceusers. Serviceuserscanreceiveaffirmationoftheirowncompetencies,
theirvalueashumanbeingsinbeingabletohelpothersandtheirpotencyin
beingabletohaveanimpact. Serviceusersalsogaincompetencythrough
involvement. Thispointwashighlightedbythosewhohadexperienceof
involvement,thetwomoreexperiencedparticipantsandthreeoutoffiveleaders.
Participantsalsonamedthosefactorsrelatedtothemselvesasindividualswhich,
intheirexperience,hadfacilitatedtheirabilitytobeanadvocate. Thesewere
theirhighereducationandtraining,havingpreviousexperienceasaprofessional
inanyfieldandhavingpersonalitycharacteristicssuchasdeterminationandself-
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
confidence. Finally,thosewithexperienceofinvolvementemphasisedthevalue
ofsupportforinitiallyencouragingandsustainingtheirinvolvement,including
familysupport,peersupportandthesupportofmedicalandotherprofessional
allies. Asoneleaderputit,therearemanyserviceusersalloverIrelandwhoare
capableofadvisingoncommittees. Theyshouldbegiventheopportunitytodo
so. Whatisevidentfromthosewithexperienceisthattheysimplyrequirethe
skills,knowledge,resourcesandsupportstoenabletheirparticipation.
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