![Paul Stanton 2
To whatextentdo you believe that theNHS could still be better at learning fromotherhealthcare
systems?
Later that day,non-executivesandexecutive BoardMemberstalkedreflectivelyaboutthe range of
waysin whichpatientcontributionsmighthave apractical impactonthe safetyandqualityof care.
Theirdebate wasilluminatedandenlivenedbyanotherof Iansdigital storiesabouthow patient
inputcouldhelp tofocusand qualityassure clinical auditprocedures.The storyiscalled Anotherpair
of eyes (http://www.patientvoices.org.uk/flv/0017pv384.htm)
To whatextenthavepatientperspectivesbeen incorporated into clinical auditprocessesin the
decadesince Ian told thatstory? Could Iansexperiencebe repeated today?
Clinical governance [B head]
The term clinical governancehasmostlynow beensupersededbyanemphasiswithinguidance on
the governance of safetyandquality.Thoughneithersafetynorqualityare simple notions,this
evolutionisadmirable.Clinical governanceneededelaborate explanationtoBoardsand clinical
staff and,critically,itdidnotfacilitate inclusivediscussionswithpatientsorcarersabout the safety
or qualityof theirowncare andwas incomprehensibletosocial workers andsocial care staff.An
emphasisonsafetyandqualityplacesbothatthe heartof an NHSBoardsgovernance agendaand
providesthe basisforaninclusive discoursewithpatientsandlocal peopleandwithall of those who
commissionandprovide local care.Thisisanessential prerequisiteforalongoverdue move from
pre-occupationwithdiscrete episodesof caretowhole-systemattentiontosafetyandquality
throughoutthe journeyof care.
The impact of PatientVoicesstories
Before Idescribe the range of waysin which,overthe lastdecade,PatientVoiceshave continuedto
contribute tomy workwithNHSBoards and seniorclinicians,Iwantto reflectuponthe nature and
originof the distinctive impactthatIansstoriesandahost of othersin the everexpandinglitanyof
PatientVoicesstorieshave uponme anduponotheraudiences.
Firstly,Ibelievethatthe creationof eachindividualPatientVoicesstoryisa parallel processtothat
whichgeneratesthe safestandbestformsof NHScare that is,whena patientandan expert](https://image.slidesharecdn.com/7c4c1792-3ade-4bad-bf03-aef7ab22bb95-160921163001/85/The-Power-of-Patient-Voices-2-320.jpg)
![Paul Stanton 8
discussionsthatfollowedaboutthe importance of rapidorganretrieval remindedclinical staffof the
needforthe deepestsensitivityintheirapproachtorelativeswhoare themselvesinthe gripof
psychological andspiritualtrauma.
It issignificantthatmanyPatientVoicesstories,suchasIans Introduction andBettysstoryabout
herbrothersdeath(Jimmysstory) endwithan openquestion.NoPatientVoicesstorycanprovide
answerstothe complex challengesof expertclinical care orof the governance of the patient
journey.Whattheycan do ishelpindividual professionalsandclinical teamstoformulateevermore
thoughtful andfocusedquestionsabouthow,forexample,theycanensure thateverypatientis
treatedwithrespectanddignityandthatindividual patientsandtheirowncarersexpertise is
acknowledgedsothattheyare trulyfull andactive partnersintheirown care. Equally,PatientVoices
can helpBoardsto reflectonhowthe dutyof care isdischarged,the appropriatenessof risk
identificationpoliciesthatthe Executive have putinplace andthe robustnessof the assurancesthat
they,as Board members,receive aboutthe day-to-daysafetyandqualityof patientcare.Hadthese
questionsbeenposedforcefullyandregularlybyBoardMembers(executive andnon-executive
alike) atMid Staffsitisimpossible tobelieve that deficiencies[that] weresystemic,deep-rooted and
fundamental[and] had existed fora long time could have gone unchallenged northat year after
yearpatientswere routinely neglected by a Trustthat waspreoccupied with costcutting,targets
and processesand lost sightof its fundamentalresponsibility to providesafecare. (Francis,2010)
In hisfinal conclusion,atthe endof hisexhaustiveInquiryintoprofoundNHSfailures(failuresthat
wentdeeperandwiderthanthe shortcomingsuncoveredatMidStaffs),Franciswrote of how vital it
was to learnfromthe individualexperiencesof patients andto allow their voicesto be heard by
thosewith responsibilityfordelivering care atthese and otherhospitals. (Francis,2010: 10) There
can be nosingle wayinwhichthe seldomheard voicesof the mostfrail andvulnerable patientsand
of marginalisedgroupscanbe heardand actedupon.All organisationsandall professionalsneed,
imaginatively,toconsiderhowtheycanensure thattheirownpractice is illuminatedandchallenged
by the livedexperience of those towhomtheyhave adutyof care.
Similarly,thoseof uswhoworkwiththe care systemas educatorsandfacilitatorsof learningneedto
imbue ourownpractice withthese insights.
Howmight PatientVoicesstories be used within yourown professionallife?](https://image.slidesharecdn.com/7c4c1792-3ade-4bad-bf03-aef7ab22bb95-160921163001/85/The-Power-of-Patient-Voices-8-320.jpg)
![Paul Stanton 9
Capturing the livedexperience ofdementiapatientsand theircarers [A head]
I recentlyhadthe privilegeof conductinganappreciativeinquiryintothe impactof dementiaon
patientsandcarers inEssex (Stanton, 2013), spendingtime intheirownhomesandlearningto
admire theircourage,theirstrengthandtheirresilience inthe face of the corrosive anddebilitating
impactof dementia. Istrove tocapture the realityof theirlivedexperiencesinthe reportand
recommendationsthatIwrote for HealthwatchEssex andthat were then shariedwithlocal NHSand
Social Care commissioners.WhenIre-readmyownreportIknew that muchof the immediacyof the
impactthat the inquiryhadmade on me and more importantlythe impactthatdementiahadon
patientsandthe livesof those whocaredfor them, hadbeenlostinthe writtenpresentation.In
preparingtowrite thischapter,I came across again Barbaraselegiacstoryaboutthe impact of
Alzheimersdiseasein Thereal Malcolm (http://www.patientvoices.org.uk/flv/0394pv384.htm) and
was captivatedafresh.WhenImeetwithcommissioners,overthe nextfew months,Iwill now show
thisPatientVoicesstorytothemto illuminate andaddimpacttorecommendationsinmyreport.
Barbara speaksto these recommendationswithmore force andeloquence thanIcan evermuster.
The future of the NHS
These are turbulentanddangeroustimesforthe NHS.Ina twenty-firstcenturycontext
characterisedbyexponential change,the accelerative needsof anageingpopulationandthe
constraintsimposedbyeconomicdownturn,it appearstobe caught up ina stormthat isonly
partiallyof itsownmaking.All toooften,itappearsthatthose wholeadit lackdirectionandare
uncertainof the transformational course thattheyneedtosteerif itisto be saved.Theycoulddofar
worse thanto listentothose whodepend(astoan extentwe all do,or will) onthe NHS fortheir
storiesare oftenimbuedwithdeepwisdom.
There it is; thelight acrossthe water.Your story.Mine.His. It hasto be seen to be believed.
And it has to be heard.In the endlessbabbleof narrative,in spite of thedaily noise,the story
waitsto be heard ...every light wasa story.And theflashesthemselveswere thestories going
outover the waves,asmarkersand guidesand comfortand warning. (Winterson,2004)
If you were to tell yourown story as a provideror recipient of care,where would thisstory takeyou
and howmightit help othersto reflect on the caring task?](https://image.slidesharecdn.com/7c4c1792-3ade-4bad-bf03-aef7ab22bb95-160921163001/85/The-Power-of-Patient-Voices-9-320.jpg)
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The Power of Patient Voices
- 1. Paul Stanton 1 The following is the chapter that I contributed to Cultivating Compassion: How Digital Storytelling is transforming healthcare edited by my colleagues and friends Pip Hardy and Tony Sumner of Pilgrim Projects (http://www.kingshampress.com/index.php?route=product/product&product_id=13 3) . It is now more than a decade since I commissioned the first Patient Voices digital story to illuminate my work with NHS Boards. In the intervening years, through the tireless efforts of Tony and Pip, the library of (freely accessible) Patient Voices stories has grown to be an internationally renowned learning resource containing hundreds of the stories of ordinary and thus extraordinary NHS patients and carers. Next month will see the launch of the NHSE funded DNA of Care Staff Voices programme, that Pip and Tony have developed over recent months to sit alongside Patient Voices and their book. This Chapter was designed to be read as an interactive experience. It poses a number of questions to the reader questions prompted, in part, by stories that can be found on the Patient Voices website. It therefore provides links to these stories. Developing compassionate governance of health care commissioning and provision: The impact of Patient Voices in work with NHS Boards, CCG governing bodies and with executives and clinical leaders Introduction In preparingfora lecture onthe need forhealthandsocial care transformation,Irecentlywatcheda couple of the veryfirstPatientVoicesstoriesthat Ihad commissioned.The storiesare toldbymy late colleague andfriend,IanKramer.Ifirstusedthem, embeddedintoaseriesof dryPowerPoint slides,withthe Boardof an NHSTrust in the MidlandsthatI had beensenttovisit. The Board was strugglinginthe face of the manycoincidentpressuresof central targets,finance and a pendingFTapplicationthatthenbesetthem, tograspthe central importance of clinical governance(see below) whichwas,atthat time,the NHSvehicle fortryingtoimprove the safety and the qualityof care.The Board inquestiondidnotwelcome yetanotheroutsiderdeliveringa Departmentof Healthdictat on howitshouldconductits ownbusiness.Iansbriefstory, Introduction (http://www.patientvoices.org.uk/flv/0015pv384.htm) changedthe nature of our discourse.Itstransparentsincerityandimmediacy,itsclarity,dignityandquietauthorityreminded them(asit remindedme thatdayand still remindsme now) of the needtostill the everpresent clamourof the urgentand to focusand reflectuponthe essence of the caringtaskand the need constantlytolearn.
- 2. Paul Stanton 2 To whatextentdo you believe that theNHS could still be better at learning fromotherhealthcare systems? Later that day,non-executivesandexecutive BoardMemberstalkedreflectivelyaboutthe range of waysin whichpatientcontributionsmighthave apractical impactonthe safetyandqualityof care. Theirdebate wasilluminatedandenlivenedbyanotherof Iansdigital storiesabouthow patient inputcouldhelp tofocusand qualityassure clinical auditprocedures.The storyiscalled Anotherpair of eyes (http://www.patientvoices.org.uk/flv/0017pv384.htm) To whatextenthavepatientperspectivesbeen incorporated into clinical auditprocessesin the decadesince Ian told thatstory? Could Iansexperiencebe repeated today? Clinical governance [B head] The term clinical governancehasmostlynow beensupersededbyanemphasiswithinguidance on the governance of safetyandquality.Thoughneithersafetynorqualityare simple notions,this evolutionisadmirable.Clinical governanceneededelaborate explanationtoBoardsand clinical staff and,critically,itdidnotfacilitate inclusivediscussionswithpatientsorcarersabout the safety or qualityof theirowncare andwas incomprehensibletosocial workers andsocial care staff.An emphasisonsafetyandqualityplacesbothatthe heartof an NHSBoardsgovernance agendaand providesthe basisforaninclusive discoursewithpatientsandlocal peopleandwithall of those who commissionandprovide local care.Thisisanessential prerequisiteforalongoverdue move from pre-occupationwithdiscrete episodesof caretowhole-systemattentiontosafetyandquality throughoutthe journeyof care. The impact of PatientVoicesstories Before Idescribe the range of waysin which,overthe lastdecade,PatientVoiceshave continuedto contribute tomy workwithNHSBoards and seniorclinicians,Iwantto reflectuponthe nature and originof the distinctive impactthatIansstoriesandahost of othersin the everexpandinglitanyof PatientVoicesstorieshave uponme anduponotheraudiences. Firstly,Ibelievethatthe creationof eachindividualPatientVoicesstoryisa parallel processtothat whichgeneratesthe safestandbestformsof NHScare that is,whena patientandan expert
- 3. Paul Stanton 3 clinicianworktogetherinapartnershipcharacterisedbyreciprocal respect. Inthe same wayeach PatientVoicesstoryisaco-productionbetweenanindividualstorytellerandPipandTonyat Pilgrim Projects.A storytellerbringsher/hismemoriesandexperiencesof care inall of theirunique spiritual, psychological emotionalandphysical complexity.PipandTonycontribute refinedtechnical expertise and an experience-basedunderstandingof the digital narrative art.Cruciallythe relationshipwith individualstorytellersandwithgroupsischaracterisedbyanempathicsensitivityandcompassion that isexpressedthroughthe active wayinwhichPipandTony listen(inSimoneWeilsphrase) with theirwhole being towhatissaid(andsometimesleftunsaid) and throughthe tendernesswith whichtheytreateach and every individual inthe groupswithwhomtheywork. The powerof thisquietprocessisexplicitlydescribedinPepLivingstones Tell meyourstory (http://www.patientvoices.org.uk/flv/0402pv384.htm).Pepconsciouslyreflectsonthe processthat ledto the creationof her original Onceupon a time story (http://www.patientvoices.org.uk/flv/0208pv384.htm).Justas Pepdescribes,PipandTonyfacilitate (butdo not direct) aprocessin whichthe locusof control inthe creationof the narrative,choice of imagesandselectionof musicremainswiththe storyteller,albeittheyreflectwithPipandTony (andoftenwithothermembersof the group) onthe pros and consof alternative coursesof action. Thissense of locusof controlisa keyreasonthat somany storytellersfindthe processof telling theirstoryto be a comfortingorevena healingone.Somethingof thissenseof healingisconveyed subtlyineventhe mostanguishedof the storiesthatare told.It isalsoone of the reasonsthat many of themare imbuedwithapowerful poeticquality.In his1802 Prefaceto The Lyrical Ballads, William Wordsworth definedapoemasthe spontaneousoverflow of powerful feelingsbutnotedthat poemstake theiroriginfromemotionrecollectedin tranquillity. The same istrue of PatientVoices narratives manyderive frompowerful episodesof loss,traumaorjoy,butlike poemstheyare consciousartefactswhere words,imagesandsoundsare craftedtogether,sothat,inAlexander Popesphrase,the soundbecomesanechoto the sense,throughatranquil processof reflection and distillation. Tome,a numberof these storiessuchasMias ILove You More conveya powerful and bittersweetmessage aboutthe enduringpowerof love (http://www.patientvoices.org.uk/flv/0400pv384.htm) Whatare the feelingsthat Miasstory evokesin you? To whatextentdoesit possesspoeticqualities?
- 4. Paul Stanton 4 Like poems,astory has nosingle ordefinitive meaning.Meaningiscreatedafresheachtime astory isviewed throughthe interactionbetweenthe objectivedigitalartefactandthe subjective viewer/listenerwithwhomthe storyresonates bothconsciouslyandunconsciously. The poet Gerard Manley Hopkins (184489) grappled withthisphenomenoninrelationtorainbows: It wasa hard thing to undo thisknot. The rainbowshinesbutonly in the thought Of him thatlooks.Yet notin thatalone, For who makesrainbowsby invention? And many standing round a waterfall See oneboweach,yet not thesame to all, But each a hand'sbreadthfurtherthan thenext. The sun on falling waterswrites the text Which yet is in the eye or in the thought. It wasa hard thing to undo thisknot. Thisunique response (eachahandsbreadthfurtherthanthe next) to the samedigital narrative (whichwritesthe text) isone reasonwhythese storiesprovidesuchapowerful stimulusto reflectionanddiscussioningroupswhetherthese groupsare the diverse membersof anNHS Board, a groupof seniorclinical specialists,orNHSTeamcolleagues.Eachpersonisexposedtothe same stimulus,buteachone activelyperceivesitfromher/hisownperspective.Insharingtheir perspectivesandexploringboththe commonalitiesanddifference inindividual responseandthe insightsthatare triggered, people learnmore abouteachother,more aboutthemselvesandmore aboutthe (oftensubmergedorunconscious) emotional dynamicof the group.The storybecomesa commonstartingpointfromwhichtacit assumptionsaboutthe nature of the caringtask can be safelyexplored. If youwatch FionaONeilsstoryaboutherfather,Onlyconnect:alife instories (http://www.patientvoices.org.uk/flv/0132pv384.htm). itmay not cause youto cry, but for me it touchesonstill unresolvedgrief atthe lossof myownfathermore thanfortyyears ago. Many of us may take some comfortfromthe sense of quietdignitythatFionaconveysandIhope thatall of us can applaudthe sensitivityandthe tendernessdisplayedbythe hospice staff andperhapsponder whysuch sensitivityandtendernessissooftenabsentwhenanoldpersondies(astoomanyof us and of those we love will) inahospital (ratherthanahospice) bed.
- 5. Paul Stanton 5 Usingstorieswith NHS Boards One of the reasonsI have usedPatientVoicesextensivelyinmyworkwithNHShospital Boardsis that inthe face of so many pressures(inanNHSsystemthat,as was made clearinthe Francisreport (2013),has not alwaysputpatientsafetyandqualityatthe top of its performance andregulatory agenda),urgentdemandsandaplethoraof data can oftenobscure the mostimportance task of governance:topromote andassure the safetyand the qualityof individual patientcare.AsFrancis observed,interalia:: an unhealthy and dangerousculturepervaded notonly theTrust... butthe systemof oversightand regulation asa wholeand at every level. (2013: 1360) echoesof the cultural issuesfound in Stafford can befound throughouttheNHSsystem. (2013: 1361) Aspectsof a negativeculturehaveemerged at all levels of the NHS system.Theseinclude: a lack of consideration of risks to patients,defensiveness,looking inwardsnotoutwards,secrecy, misplaced assumptionsof trust,acceptanceof poorstandardsfailureto putthe patientfirst in everything done. (2013: 1357) AsSir David Nicholson accepted,theperformancemanagement systematthetimewasnot focused on,orsensitive to,issuesof quality. (2013: 70) Reflectinguponthe avoidabledeathsof somanypatientsatMid StaffsHospital,Robert Francis concludedthatthere hadbeen a dangerousabrogation of directors fundamentalduty to protect the safetyof thosewho cometo the Trustfor care and treatment. (2013: 68) Whenhe came to reflectuponthe firstphase of the Inquiry,Francisdrew attentiontothe distinctive impactthatlisteningtothe personal testimonies of the relativesof patientswhohaddied avoidablyhaduponhim,hisInquirycolleaguesandobservers: Theexperienceof listening to so many accountsof bad care,denialsof dignity and unnecessary suffering madean impactof an entirely differentorderto thatmadeby reading written accounts. (Francis,2010: 10) However, overwhelminglyitiswrittenaccounts,complementedbyverbal reportsfromExecutive Directors, that are presentedtoBoards.While itisnoteasyfor a patient(orrelative) toappearbefore anNHS Board and give a personal accountof theirexperience,aPatientVoicesstorycanconveyasimilar immediacyandsparkreflective focusonthe essence of the Boardscollective governance task. When,forexample,in2008 the Corporate ManslaughterandHomicide Actbecame law,Iwantedto ensure thateveryBoardmemberunderstoodnotjustthe onerouslegal responsibilitythatwas
- 6. Paul Stanton 6 placedupontheircollectiveshoulders,buttokeepat the forefrontof theirmindthatsucha charge couldonly arise where anindividualpatient,notamortalitystatistic,haddiedintheircare.Iused Bettysstoryabout the deathof her brother,Jimmy toillustrate this (http://www.patientvoices.org.uk/flv/0047pv384.htm) Whatdo you see asthe key issuesin relation to thesafety and quality of care that this bleakand chilling story raises? Interalia,inmy discussionswithBoardsthe followingthemeswere identifiedandthendiscussedin relationtothe Boardsgovernance of local safetyandquality: staff culture evidence of adherence topolicyinthe waythatstaff initiallydeal withaclinical emergency actionthat shouldbe takento follow uponthe absence of propercase records the sharingof learningfromaSeriousUntowardIncident the needto listenandtoact upon informationfromfamilyandothercarers issuesof safe transferof full informationandthe needtogoverntransitionof care between differentorganisations. From the pointof viewof patients, risksexpressthemselvesmostforcefully at pointsof transition thatis, at the interfaces between organisationalsub-systems(e.g.between theward environmentand theatre),atthe boundary between differentorganisations (e.g.betweenprimary and secondary care providers) and atthe frontierbetween differentsectors(e.g.between health and socialcare or housing) in an escalating hierarchy of dislocation and potentialharm. (Stanton,2004) The role of carers The systemsreflexive tendencytoundervaluethe insightsof apatientsowncareris beautifully underlinedbyAlisonsstory, Who cares?(http://www.patientvoices.org.uk/flv/0003pv384.htm) abouther husbandsexperience inthe leaduptohislivertransplant. Apartfromemphasisingthe crucial role of carers and the needforthemto remainas full andactive partnersinthe care team at all pointsof a patientjourney thisstoryrevealsthe ambivalence andsometimes aggressive/defensive responsethatcanbe evokedinall butthe mostexpertandsensitive professionals.Bytheirtrainingandtheirdailyexperience manyprofessionalshave grownusedto
- 7. Paul Stanton 7 the exercise of (unquestioned) authorityandcontrol.Notall of themwelcome the culture shiftthat isnecessarytoaccept that the bestcare is a co-production.AsSirIanKennedycommented,more than a decade ago,in the lightof his2001 Inquiryintothe avoidable deathsof babiesatBristol Royal Infirmary: weshould help professionalsthrough thebarriers thatpreventthemseeing their patientsas interactive partners.A matureculture will settle on sharing powerand responsibility,on a subtlenegotiation . . . between professionaland patientasto whateach wantsand whateach can deliver.This is the culture weshould worktowards helping each other aswe go. Noteveryone inthe professionshasyetreachedthatpointof maturity.WhenIworkedforthe DH, a General Practitionerwho,boththenandnow occupiedahighlyinfluential positioninthe professionalhierarchy,objectedtomyuse of PatientVoicesonthe groundsthathe/she hadno time forprofessional whingers.Apartfromthe deepinsecuritywhichthisconveyed,italsotold me withcertaintythatthisGP had neverlookedatthe storywe were discussing(nor,Isuspect,any others).The storyinquestionwasIans Measured innovation:working together (http://www.patientvoices.org.uk/flv/0016pv384.htm) whichisa celebrationof the expertiseof professionalstaff andof theirwillingness torespondwithsensitivityandimaginationtowhatthis particularGP mighthave dismissedas afailure tocomplywithprescribedtreatment. I use Iansstory frequently in my workwith SeniorClinicians and with GPs to exemplify whatI mean when I talk aboutthe(somewhatclumsy) term theco-production of care and when Itry to ensure thatinformed concordancewithtreatmentreceivesasmuch attention asdoesaccurate prescribing. I amdelighted to say thatI haveneverheard Iansstory described aswhinging. Whatlessons,if any,doesthis story hold foryou? Usingstoriesto highlightthe needfor dignityand respect Alongside theircontributiontoreflectiononthe overarchingthemesof effective governance and bestclinical practice,sometimesaparticularstorycan provide the perfectintroductiontoaspecific thematicconference orworkshop.WhenI ledaconsultationdayforthe Departmentof Healthon Non-HeartbeatingOrganDonation,Iwasable touse the movingstorytoldbyGrace andJoe about the lossof theirson,Daryl Giving someonea second chance (http://www.patientvoices.org.uk/flv/0008pv384.htm).Thisprovidedapowerful andhopeful introductiontothisvital andseldomdiscussedtopicandensuredthatthe highlytechnical
- 8. Paul Stanton 8 discussionsthatfollowedaboutthe importance of rapidorganretrieval remindedclinical staffof the needforthe deepestsensitivityintheirapproachtorelativeswhoare themselvesinthe gripof psychological andspiritualtrauma. It issignificantthatmanyPatientVoicesstories,suchasIans Introduction andBettysstoryabout herbrothersdeath(Jimmysstory) endwithan openquestion.NoPatientVoicesstorycanprovide answerstothe complex challengesof expertclinical care orof the governance of the patient journey.Whattheycan do ishelpindividual professionalsandclinical teamstoformulateevermore thoughtful andfocusedquestionsabouthow,forexample,theycanensure thateverypatientis treatedwithrespectanddignityandthatindividual patientsandtheirowncarersexpertise is acknowledgedsothattheyare trulyfull andactive partnersintheirown care. Equally,PatientVoices can helpBoardsto reflectonhowthe dutyof care isdischarged,the appropriatenessof risk identificationpoliciesthatthe Executive have putinplace andthe robustnessof the assurancesthat they,as Board members,receive aboutthe day-to-daysafetyandqualityof patientcare.Hadthese questionsbeenposedforcefullyandregularlybyBoardMembers(executive andnon-executive alike) atMid Staffsitisimpossible tobelieve that deficiencies[that] weresystemic,deep-rooted and fundamental[and] had existed fora long time could have gone unchallenged northat year after yearpatientswere routinely neglected by a Trustthat waspreoccupied with costcutting,targets and processesand lost sightof its fundamentalresponsibility to providesafecare. (Francis,2010) In hisfinal conclusion,atthe endof hisexhaustiveInquiryintoprofoundNHSfailures(failuresthat wentdeeperandwiderthanthe shortcomingsuncoveredatMidStaffs),Franciswrote of how vital it was to learnfromthe individualexperiencesof patients andto allow their voicesto be heard by thosewith responsibilityfordelivering care atthese and otherhospitals. (Francis,2010: 10) There can be nosingle wayinwhichthe seldomheard voicesof the mostfrail andvulnerable patientsand of marginalisedgroupscanbe heardand actedupon.All organisationsandall professionalsneed, imaginatively,toconsiderhowtheycanensure thattheirownpractice is illuminatedandchallenged by the livedexperience of those towhomtheyhave adutyof care. Similarly,thoseof uswhoworkwiththe care systemas educatorsandfacilitatorsof learningneedto imbue ourownpractice withthese insights. Howmight PatientVoicesstories be used within yourown professionallife?
- 9. Paul Stanton 9 Capturing the livedexperience ofdementiapatientsand theircarers [A head] I recentlyhadthe privilegeof conductinganappreciativeinquiryintothe impactof dementiaon patientsandcarers inEssex (Stanton, 2013), spendingtime intheirownhomesandlearningto admire theircourage,theirstrengthandtheirresilience inthe face of the corrosive anddebilitating impactof dementia. Istrove tocapture the realityof theirlivedexperiencesinthe reportand recommendationsthatIwrote for HealthwatchEssex andthat were then shariedwithlocal NHSand Social Care commissioners.WhenIre-readmyownreportIknew that muchof the immediacyof the impactthat the inquiryhadmade on me and more importantlythe impactthatdementiahadon patientsandthe livesof those whocaredfor them, hadbeenlostinthe writtenpresentation.In preparingtowrite thischapter,I came across again Barbaraselegiacstoryaboutthe impact of Alzheimersdiseasein Thereal Malcolm (http://www.patientvoices.org.uk/flv/0394pv384.htm) and was captivatedafresh.WhenImeetwithcommissioners,overthe nextfew months,Iwill now show thisPatientVoicesstorytothemto illuminate andaddimpacttorecommendationsinmyreport. Barbara speaksto these recommendationswithmore force andeloquence thanIcan evermuster. The future of the NHS These are turbulentanddangeroustimesforthe NHS.Ina twenty-firstcenturycontext characterisedbyexponential change,the accelerative needsof anageingpopulationandthe constraintsimposedbyeconomicdownturn,it appearstobe caught up ina stormthat isonly partiallyof itsownmaking.All toooften,itappearsthatthose wholeadit lackdirectionandare uncertainof the transformational course thattheyneedtosteerif itisto be saved.Theycoulddofar worse thanto listentothose whodepend(astoan extentwe all do,or will) onthe NHS fortheir storiesare oftenimbuedwithdeepwisdom. There it is; thelight acrossthe water.Your story.Mine.His. It hasto be seen to be believed. And it has to be heard.In the endlessbabbleof narrative,in spite of thedaily noise,the story waitsto be heard ...every light wasa story.And theflashesthemselveswere thestories going outover the waves,asmarkersand guidesand comfortand warning. (Winterson,2004) If you were to tell yourown story as a provideror recipient of care,where would thisstory takeyou and howmightit help othersto reflect on the caring task?
- 10. Paul Stanton 10 Keylearning: 1. PatientVoicesdonotprovide solutionstothe complex dilemmaof providingcompassionate and safe care. Theydo,however,actas a powerful stimulustoreflectiveandpatientfocused considerationanddebate aboutelements of the dilemmasof care andhow practice can be improved. 2. Because of theirpoeticqualities,PatientVoicesevoke powerful feelingsandstimulate personal reflectiononthe core valuesof the caringtask andof itsessential humanity. 3. A carefullychosenthematicstorycan illuminate debateonaspecificaspectof care,as well as touchinguponoverarchingcommonalities. 4. The litanyof PatientVoicescontainexamplesof inspiringcare,aswell ascautionarytales.In turbulenttimestheyprovide markersandguides,comfortandwarningtoall of those engagedin caring. 5. Listeningtothe voice of patientsandcarerscan prompt eachof us toreflectandbeginto formulate ourownstoryof care whetherasa recipientoras a provider. References Francis,R. (2010) IndependentInquiryintocare providedbyMidStaffordshire NHSFoundationTrust January2005March 2009, Vol.1, p.10 Francis,R. (2013) Reportof the Mid StaffordshireNHSFoundationTrust PublicInquiry,Volume1: Analysisof evidence andlessonslearned(part1),p.68, p.70 Francis,R. (2013) Reportof the Mid StaffsNHSFoundationTrust PublicInquiry,Volume1: p.70 Francis,R. (2013) Reportof the Mid StaffordshireNHSFoundationTrustPublicInquiry, Volume3: Presentandfuture,-Annexes,p.1357,pp.13601 Kennedy,I(2001) The Reportof the PublicInquiryinto ChildrensHeartSurgeryatthe Bristol Royal Infirmary19841995: LearningfromBristol Stanton,P.(2004) The StrategicLeadershipof Clinical GovernanceinPrimaryCare Trusts.London: Departmentof Health/NatPaCT. Stanton,P.(2013) The impact of dementia:HealthwatchEssex PublicInvolvementProject Winterson,J.(2004) Lighthousekeeping.London:HarperCollins.