This document is a chapter contributed by Paul Stanton to the book "Cultivating Compassion: How Digital Storytelling is transforming healthcare". It discusses how digital stories created through Patient Voices have been used in Stanton's work with NHS boards to help focus on patient safety and quality of care. The stories create common starting points for reflection and allow different perspectives to emerge. Key issues raised include staff culture, risk at transition points, the role of carers, and moving to a more mature culture of shared power between professionals and patients.

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.Ian’sbriefstory,
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 Ian’sdigital 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 Ian’sexperiencebe repeated today?
Clinical governance [B head]
The term ‘clinical governance’hasmostlynow beensupersededbyanemphasiswithinguidance on
the ‘governance of safetyandquality’.Thoughneithersafetynorqualityare simple notions,this
evolutionisadmirable.‘Clinical governance’neededelaborate explanationtoBoardsand clinical
staff and,critically,itdidnotfacilitate inclusivediscussionswithpatientsorcarersabout the safety
or qualityof theirowncare andwas incomprehensibletosocial workers andsocial care staff.An
emphasison‘safetyandquality’placesbothatthe heartof an NHSBoard’sgovernance agendaand
providesthe basisforaninclusive discoursewithpatientsandlocal peopleandwithall of those who
commissionandprovide local care.Thisisanessential prerequisiteforalongoverdue move from
pre-occupationwithdiscrete ‘episodesof care’towhole-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 impactthatIan’sstoriesandahost of othersin the everexpandinglitanyof
PatientVoicesstorieshave uponme anduponotheraudiences.
Firstly,Ibelievethatthe creationof eachindividualPatientVoicesstoryisa ‘parallel process’tothat
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(inSimoneWeil’sphrase) ‘with
theirwhole being’ towhatissaid(andsometimesleftunsaid) and throughthe tendernesswith
whichtheytreateach and every individual inthe groupswithwhomtheywork.
The powerof thisquietprocessisexplicitlydescribedinPepLivingstone’s 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 music–remainswiththe storyteller,albeittheyreflectwithPipandTony
(andoftenwithothermembersof the group) onthe pros and consof alternative coursesof action.
Thissense of ‘locusof control’isa 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 definedapoemas‘the spontaneousoverflow of powerful feelings’butnotedthat
poemstake their‘originfromemotionrecollectedin tranquillity’. The same istrue of PatientVoices
narratives – manyderive frompowerful episodesof loss,traumaorjoy,butlike poemstheyare
consciousartefactswhere words,imagesandsoundsare craftedtogether,sothat,inAlexander
Pope’sphrase,the ‘soundbecomesanechoto the sense’,throughatranquil processof reflection
and distillation. Tome,a numberof these storiessuchasMia’s ‘ILove You More’ conveya powerful
and bittersweetmessage aboutthe enduringpowerof love
(http://www.patientvoices.org.uk/flv/0400pv384.htm)
Whatare the feelingsthat Mia’sstory evokesin you?
To whatextentdoesit possess‘poeticqualities’?

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Like poems,astory has nosingle ordefinitive ‘meaning’.Meaningiscreatedafresheachtime astory
isviewed –throughthe interactionbetweenthe objectivedigitalartefactandthe subjective
viewer/listenerwithwhomthe storyresonates –bothconsciouslyandunconsciously. The poet
Gerard Manley Hopkins (1844–89) grappled withthisphenomenoninrelationto‘rainbows’:
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 (‘eachahand’sbreadthfurtherthanthe next’) to the ‘same’digital narrative
(which‘writesthe text’) isone reasonwhythese storiesprovidesuchapowerful stimulusto
reflectionanddiscussioningroups–whetherthese 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 FionaO’Neil’sstoryaboutherfather,‘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 poorstandards…failureto 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 Board’scollective 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
Betty’sstoryabout 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 Board’sgovernance 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 system’sreflexive tendencytoundervaluethe insightsof apatient’sowncareris beautifully
underlinedbyAlison’sstory, Who cares?(http://www.patientvoices.org.uk/flv/0003pv384.htm)
abouther husband’sexperience 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 storyinquestionwasIan’s 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 Ian’sstory 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
that‘informed concordancewithtreatment’receivesasmuch attention asdoesaccurate prescribing.
I amdelighted to say thatI haveneverheard Ian’sstory described as‘whinging’.
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,suchasIan’s Introduction andBetty’sstoryabout
herbrother’sdeath(Jimmy’sstory) 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 patients’andtheirowncarers’expertise 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
year‘patientswere 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 and‘to 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 Barbara’selegiacstoryaboutthe impact of
Alzheimer’sdiseasein 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 their‘poetic’qualities,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,comfortandwarning’toall of those engagedin
caring.
5. Listeningtothe voice of patientsandcarerscan prompt eachof us toreflectandbeginto
formulate ourown‘storyof care’ – whetherasa recipientoras a provider.
References
Francis,R. (2010) IndependentInquiryintocare providedbyMidStaffordshire NHSFoundationTrust
January2005–March 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.1360–1
Kennedy,I(2001) The Reportof the PublicInquiryinto Children’sHeartSurgeryatthe Bristol Royal
Infirmary1984–1995: 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.