20pp patient revolution patient revolution - nhs england · 2015-08-12 · heart of england nhs...

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Creating a Revolution in Patient and Customer Service Experience Using Patient Stories

Midlands and East

Creating a Revolution in Patient andCustomer Service Experience

Using Patient Stories

Executive summary

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As part of its commitment to createa revolution in patient andcustomer experience, NHS Midlandsand East has been keen tounderstand the role patient storiesare playing within organisationsand the extent to which this ishelping deliver a Patient Revolution.

During the Summer, an on-line survey together with aseries of deep dive case study interviews werecommissioned by NHS Midlands and East to understandhow patient stories are being used by NHS organisationsacross the cluster and in particular how they are beingused by Boards in support of improving quality andpatient experience.

This report summarises the findings of this review andconcludes with a series of key observations and hints andtips for organisations using patient stories. Featuredwithin Annex A is a copy of a ‘Patient Stories Checklist’,developed by the Burdett Nursing Trust and identified bya number of Trusts across the West Midlands NHS as acommon useful resource for organisations consideringtaking stories to Boards.

Key observations as a result of the survey and interviewsconcluded that;

The use of patient stories across the Midlands and East isa relatively new technique with widespread use amongstTrusts but limited evidence of use by commissioners.

Patient stories are deemed as valuable in supportingquality improvement discussions at both strategic andoperational levels (Board to Ward).

A wide range of methods for capturing anddisseminating patient stories are in place across theMidlands and East NHS.

Hearing directly the ‘voices of patients’ enables greaterunderstanding of the issues affecting patients and bringsreported experience to ‘life’.

Celebrating and learning from positive experiences is asvaluable as learning from examples of less positiveexperience.

Tried and tested good practice advice is readily available.

The benefits of patient stories are wide reaching.

Stories provide ‘real’ insight in support of serviceimprovement.

Embedding patient stories is key to creating a patient andcustomer services culture.


Introduction and background

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During the summer of 2012, an online survey was carriedout by NHS Midlands and East to capture informationfrom around 100 organisations on the use of patientstories to deliver the Patient Revolution. In total, 40organisations completed the survey, a 40% response rate.A detailed breakdown of organisations is listed below.

Trust type No of % ofrespondents respondents

Acute Trusts 30 75Primary Care Trusts 5 13Mental Health Trusts 2 5Ambulance Trusts 1 3Community Trusts 2 5Total 40 100

This report looks at the information collected from thesurvey and aims to address the following key questions:

• How are organisations using patient stories? • How are patient stories captured and conveyed?• How are patient stories influencing service

improvements?• What advice do organisations currently embedding

patient stories have for others starting in the process?

In addition to the survey, this report is supported by thefindings of a series of case study interviews undertakenwith eleven NHS Trusts across the Cluster, a number ofwhich focus on the use of patient stories. The case studiesreport ‘Creating a Revolution in Patient and CustomerServices Experience; 11 Journeys From Across The Cluster’should therefore be read in conjunction with this report.

Using patient stories

The majority of Trusts who responded to the survey (37out of 40) make use of patient stories within theirorganisation, with 43% of respondents having only doneso for the last two years. A further 35% have only beenusing patient stories in the past 12 months.

The highest proportion of patient stories relate to acutecare and care of the elderly. Other frequent topicscovered by patient stories highlighted by Trusts were:

• Maternity care • Ambulance service (pre-hospital care)• Drug and alcohol services • Dental services • Transition and adolescent care • Community services.

Q5. Do you make use of patientstories within your Trust?

Q6. How long has your Trustbeen using patient stories?

Q7: Could you indicate in whichsetting patient stories were usedover the past 6-12 months?


%1009080706050403020100

% 0 10 20 30 40 50 60

5%

43%35%

16%

0%

Past 3months

Acute Care

Care of Elderly

Care for people with physical/learning disabilities

End of life care

Emergency care

Mental Health

Children’s care

Other

Integrated Health and Social Care

Past 6months

Past 12months

Past 2months

More than2 years

Yes, 93%

No, 7%

Capturing patient stories

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Trusts across the NHS in Midlands and East use a varietyof tools to capture patient stories. However Trusts seemto be moving away from the more traditional methodssuch as using written documents (writtenstories/interviews, letters) to more visual methods such asrecorded materials (face to face interviews, DVD or audiorecordings or using photographs) when relaying stories.

According to the survey results, many patient storiesappear to come from patient feedback (e.g. complaintsregister, PALs – the Patient Advice and Liaison service,Complaints and NHS Choices), suggestions or untowardincidents, with patients contacting the trust to report acomplaint or to provide compliments on the service theyreceived;

“Patients who complain, complete surveys,provide compliments or use the PALSservice are asked if they would beinterested in telling their stories to ourBoard. Patients who express an interest arethen contacted and usually met at theirown homes by the Director of Nursingand/or Head of Patient Experience. Detailsof their story including some backgroundare recorded and a story drafted which isagreed with the patient before submission.In most instances, the patient and theirfamily attend the Board meeting whentheir story is discussed.”(Ambulance Service Trust, East Midlands)

Despite this, most Trusts do not solely rely on thecomplaints register to capture patient stories. Instead,there is a move to capturing stories through NHS staff.These methods include capturing stories through:

• Training staff to collect stories from patients • Asking staff to identify examples of where services have

worked well for patients or where challenges toprovision of services have been noted

• Ward visits • Feedback from ward sister meetings • Feedback from members of Patient Panels.

“Volunteer or staff member tell their storyof a patient they have helped carefor/support and the developments thathave resulted, e.g. development ofPICTOCOM tool for patients withcommunication and language difficultiesfollowing work of a Health Care Assistantwith patients on stroke unit withcommunications difficulties.” (Acute Trust, West Midlands)

A number of Trusts identified that patients are keen toshare their stories, and this is something that isconsciously enabled by these organisations. For some,such as University Hospitals Coventry and WarwickshireNHS Trust, there is a waiting list of patients who havesigned up to tell their stories, from which the Trust is thenable to select stories to present at various forums such asBoard Meetings or directly to frontline medical staff.

For some Trusts, active ‘story gathering’ is undertakenand is something which represents an alternative way ofcapturing patient stories. For example, within a numberof Trusts such as Leicestershire Partnership NHS Trust,Board Members undertake unannounced walkabouts onwards throughout the hospital, in order to both observecustomer care on the wards and also to speak directly topatients to find out more about their experience withinthe Trust and to gather stories to relay back to staff andthe Board in general.


Conveying patient stories

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Face to face Trusts report that the most powerful impact of patientstories is when the latter are conveyed by patientsthemselves. Patients are given a voice and invited topresent their stories in different settings including:

• To the Board• At conferences and professional forums• In patient focus groups • At local ward meetings • At appreciative enquiry workshops.

Staff training and induction It is common practice among several trusts to use patientstories and invite patients to staff training and induction.For example, patients are invited to tell their story to staffinvolved in delivering care, to clinical teams and to doctorsin training. e.g. dignity days and staff development days,attend staff training days or take part in training videos.

The use of patient stories in staff training is somethingwhich was reinforced throughout the Trust case studyinterviews, with a number of Trusts routinelyincorporating these into their staff training and, in somecases, staff induction programmes.

The use of patient stories in this context, particularlyduring the early stages of joining an organisation wasseen to enable an in-depth understanding of patientexperience, and to establish organisational expectationsin relation to this. This approach reinforces and embedsthe core values of the Patient Revolution, by providingstaff with an insight into ‘real’ patient stories andoutlining the Trust’s own approach.

The use of patient stories relating to specific medicalconditions, such as dementia, within staff training wasanother area which was highlighted in both the surveyand case study interviews. This was seen as a particularlyuseful application of patient stories as this not onlyenables greater level of understanding amongst staff inrelation to meeting the needs of individuals with complexneeds but also allows patients and carers to have a directimpact upon service design and to share their viewsregarding what would improve their experience within ahospital environment.

Third party reporting/written word Trusts still most commonly report patient stories throughthird parties. These include:

• Stories presented in reports (e.g. Care & Compassionreport, Chief Executive Advisory Group Report)

• Stories presented at meetings (e.g. Board, IntegratedGovernance Committee, Quality and SafetyCommittee)

• Stories and letters included in staff stories, intranet,hospital newsletters and bulletins.

“Patient stories are captured through wardvisits undertaken by members of the Boardof Directors, patient panel and the PALSmanager. The patient stories are presentedto the Quality and Safety Committee whichis attended by both Executive and Nonexecutive members of the Board. Theminutes of the Quality and SafetyCommittee are presented to the Board ofDirectors and includes details of the patientstory discussed”(Acute Trust, West Midlands)

Examples of InnovationLeicestershire Partnership NHS Trust’s use of live patientstories in a ‘chat show’ format is one example of theinnovative use of patient stories delivered to BoardMembers. In this instance, patients are invited to attendthe Trust’s Board meetings and are then ‘interviewed’ bythe Trust’s Director of Nursing in order to provide adetailed insight into their story. This approach was seenas particularly useful as this allows the patient story to bedelivered in a way which keeps it ‘personal’, yet allows athorough and detailed account of the patient’sexperience to be explored within the Board Meeting.

Whilst the use of patient stories presented via DVD wasfairly routine within a number of Trusts, one example ofwhich offered a new approach to this was that adopted byHeart of England NHS Foundation Trust. Here, patient storyDVDs are used throughout staff training sessions, but alsothe Trust films staff responses to patient story DVDs as theyare shown. This cyclical approach, emphases the importanceof reflecting on staff responses to patient stories and theimportance of patient stories in supporting individual andorganisational learning and behavioural change in relationto the broader patient revolution agenda.

Ensuring that face-to-face patient stories are engagedwith and fully understood by those to whom they aredelivered is another key consideration also highlighted byLeicestershire Partnership NHS Trust’s ‘Complaints andCompliments Analysis’ process. These are staff trainingsessions within which patient stories relating to aparticular comment or complaint received by the Trust aredelivered to staff members by the patient themselves. Akey principle which underpin such session is that staff arerequired to listen to the patient’s story without speaking,in order to fully engage with the experience. Staff arethen asked to repeat the story in order to establish theirlevel of understanding and interpretation, followed by amore thorough discussion of this as a team activity. Thisform of patient story delivery highlights how suchinitiatives can enable staff to go beyond simply listeningto patient stories and seek to develop a deeperunderstanding of patient experience within their Trustfrom this perspective.


Choosing which stories to tell

Patient stories and the board

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Whilst positive experiences are an effective way ofsharing examples of good practice in terms of customerservice and patient experience, the use of negativeexamples is another way in which patient stories are usedto educate staff members and instigate change andimprovements.

A high proportion of patient stories come from complaintsor feedback. Therefore it is not surprising that trusts selectstories from those avenues. Some trusts choose storiesfrom complaints or investigations while others takesuggestions from patients’ council, service referencegroups, volunteers and direct approaches from patients.

When asked, most trusts claim stories generally getselected to reflect all services provided by the Trust. Insome cases, stories are based on key priorities or used toillustrate the Trusts corporate objectives.

A number of respondents reported a conscious decisionfor trusts to select both positive and negative examplesof patient stories, in order to reflect a balanced view andthe range of patient experiences. This is something whichwas particularly highlighted within responses receivedfrom Worcestershire Acute Hospitals NHS Trust, UniversityHospitals Coventry, Leicestershire Partnership NHS Trust,Warwickshire NHS Trust and Sherwood Forest HospitalsNHS Foundation Trust.

In 84% of cases, patient stories appear as a formal itemon the Trust Board agenda. Of the 16% who do not havestories as a formal item (6 trusts), five are Acute trustsand one Primary Care Trust.

Where patient stories are used, in around 6 in 10 casespatient stories appear monthly on the Board’s agenda.However, in line with the length of time that patientstories have been used in trusts, the trend seems recentwith only 6% of trusts saying they have had stories as anitem at Board level for over two years.

Q14. How frequently do patientstories appear as an itemon the Trust Board agenda?

Q15. How long have you had aformal patient story item on theTrust Board agenda?

As discussed above, patient stories across the Trusts whoresponded appear to feature in many instances on theBoard as a dedicated agenda item. However, there is noone standard format for conveying patient stories. Inmany cases, patients, carers and/or relatives are invited toput their story in person. Where this is not the case,stories are presented on their behalf in various ways:

• Staff, volunteers, Ward Sisters, Nurse Specialists orMatrons present stories of patients

• Matrons share patient stories and how the experiencechanged their views and the practice of their teams

• Letters, feedback, web postings and/or any trends areread out and in some cases followed by discussion

• Written stories/papers conveying a patient story/storiesare discussed

• Patient story videos and film • Stories are included and discussed in deep dive sessions

or Board Development Workshops • Discussion of key themes/trends relating to patient

stories • Verbal reports from Board Member visits to clinical

areas.


%1009080706050403020100

15%

24%

61%

Monthly Bi-monthly As and whenrequired

%1009080706050403020100

38%28% 28%

6%

Past 6months

Past 12months

Past 2 years More than 2 years

07

“At the private Board meetings, a matronpresents an incidence or series of incidenceswhich resulted in a poor experience and(Acute Trust, West Midlands)

“Whilst we do not currently use individualpatient stories within the PCT we doregularly review patient opinion websitesand use soft intelligence gained throughPALS and the patient and publicengagement team to feed key themes andtrends to our Board”(PCT East of England)

“Patients, carers, ex carers attend theprivate lunch session (1 hour) before everyPCT cluster public board meeting and sharetheir story with the full Board, allowingtime for them to talk about theirexperience and then for the Boardmembers to ask questions.”(PCT Cluster, West Midlands)


Benefits of using patient storiesUndeniably, all Trusts who responded to the survey seepatient stories as a powerful tool in improving care withbenefits extending not only to the organisation (at staffand Board levels) but also to patients themselves. Patientstories are ‘memorable’, ‘real’ and can have profoundimpact on staff and other stakeholders.

Benefits to staffA reality check - the main benefit to staff of patientstories is its ability to ground staff; by listening topatients, staff are made to “stop and think” of the waythey are delivering care. This process can bring aboutfocus, raise awareness and understanding among staff.

Empowering and motivating staff – positive patientstories also help to boost staff morale and empower staffto act on feedback received and make changes inpractice;

“Personal contact always refreshes theimpact on nursing care being delivered.The importance of 'humanising' contactcannot be underestimated and the impacton staff is a forceful visual impact. Theyreturn to their ward environments re-invigorated into wanting to 'make thedifference' - ultimately with the intentionof improving patient experience.”(Acute Trust, East of England)

“A Trust Volunteer, who has been integrallyinvolved in improving the experience forpatients who have difficulty feedingthemselves, told his story of one of thepatients he worked with who can now feedhimself, and of the success of the Trust'swork using appropriately trained

volunteers supporting patients(appropriately risk assessed by nursingstaff) in feeding. This story has also beenfeatured in the local press.” (Acute Trust, West Midlands)

Benefits to organisationsCatalyst for behaviour and culture change - Mostimportantly, patient stories can bring about a change inculture through exposure to patients and patient stories.Staff are immersed in the culture of involving, listening,hearing, responding to feedback and with this comesacceptance, realisation, reflection acceptance and withthis comes acceptance, realisation, reflection andacceptance of the impact their care delivery has onpatients and reflection. Staff hear what is important topatients and which may not have been otherwiseapparent and this can be a powerful driver for change.

“We have had consultants admit it wasthey who had not responded to a particularpatient as they felt that someone elsewould see to them, their reflection wasthat the story would change their futurebehaviour. More strategically, the keybenefit is for an increasing number offrontline staff getting exposure to thereflections of patients and carers that theydid not have access to previously, thusinfluencing a change in culture.” (Acute Trust, West Midlands)

Benefits of using patient stories (continued)

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“It gives staff time to listen and anappreciation of what is important to patients.It promotes a culture of involving, listeningto, hearing and responding to feedback.”(Acute Trust, East of England)

“Compilation of patients who had recentexperience of the Acute Medical Unit –Patients were interviewed at home afterdischarge. The film was used for aTransformation planning day to show staffhow patients perceive their service - thefilm was well accepted and used in theplanning process” (Acute Trust, West Midlands)

The main benefit of patient stories at Board level is thatthey help ground discussions in the reality of patient care.Patients are put at the heart of decisions as the storiesare powerful reminders of the context within whichBoard Members are making decisions. Board Membersare able to see how their decisions impact on patients.

Forging a connection - Some trusts mention that patientstories allow the Board to understand better thecomplexities of day to day life at an operational level.This helps forge and maintain a connection between theleaders and their primary purpose of providing highquality care.

“One of the key benefits identified byBoard members, particularly Non ExecutiveDirectors, is that they find hearing directfrom local people using health services avery powerful indicator of local experience,which supports them to make moreinformed choices and decisions, asmembers of the Board. One Non ExecutiveDirector said it was the ‘most useful hour ofthe meeting’.” (PCT Cluster, West Midlands)

“Patient stories used in meeting settingsserve as a reminder to the meetingparticipants about the context in whichthey are making decisions and can oftenstimulate discussion about doing thingsdifferently for the benefit of patients.” (Acute Trust, East Midlands)

“The key benefit is that the Board start theirmeeting grounded in an awareness of thepatient/carer - 'customer' - and this focusestheir attention on the quality of care aboveall else. Board members report that theyfind meeting patients/carers in this waydeeply affecting and that it influences theiroutlook for the rest of the meeting” (Acute Trust, East of England)

“Trust board are informed from aperspective of the person using ourservices. This qualitative information hasallowed increased scrutiny of performancedata. An example would be the changes tocare pathway for CRISI services following apatient story at board.”(MH Trust, East Midlands)

“From a cluster perspective, there is someassurance that providers are taking patientsviews seriously. All trusts are engaged insome way in this, which suggests effectiveprovider development, and in taking this toCQRM there is an opportunity to informcommissioning decisions” (PCT Cluster, West Midlands)

“Service user's experiences of usingmaternity services at XXX and paediatricservices for her son. Her experiences wereshared at the same session as the Boardmade their decision about whether to goout to formal consultation over maternityand paediatric services at these hospitals”(PCT Cluster, West Midlands)


Benefits of using patient stories (continued)

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Board commitment to improving experience - havingpatients come in and tell their story is an effective toolnot only for the organisation but for the patientthemselves. Using patient stories demonstrates thecommitment of the organisation to patients and thecontinual improvement and shows that the Board istaking patient experience seriously.

Empowering patients as partners - furthermore somerespondents clearly feel that patient stories createempowered patients and greater partnership working aspatients feel listened to and as a result, are willing tobecome active stakeholders in the engagement processesby joining user groups or becoming ambassadors.

“Patients/carers report they find theprocess cathartic and empowering - moreso than just getting a letter - the process ofcoming in to the formality and gravitas ofthe Board meeting means a great deal toparticipants. Participants stay in touch andsome have joined user groups/continued tobe engaged. They are also excellentambassadors.” (Acute Trust, East of England)

“The power of a patient telling their ownstory is more powerful than a managementargument. Patients therefore feel moreempowered which can lead to greaterpartnership working” (Acute Trust, West Midlands)

Benefits to patientsPatients’ level of engagement and participation withsharing their stories was evident across a number oforganisations who agreed that patients find this processbeneficial. This was further supported by case studyinterviews at Heart of England NHS Foundation Trust andUniversity Hospitals Coventry and Warwickshire NHS Trust(UHCW), where patients are keen to have their storiesheard and, in the case of UHCW, a waiting list is currentlyin place for patients wanting to share their stories. Thisdemonstrates patients’ enthusiasm for sharing theirstories and experiences in such instances, inferring thatthis is something they find to be both a beneficial andpositive experience.

Of the 40 organisations who took part in the survey, 32organisations answered the question about whether theuse of patient stories has had an impact on serviceimprovements. All, except for one of those that answeredthe question claimed that the use of patient stories hashad a direct impact on service improvements.

“The complainant was offered theopportunity to come in and tell their story tostaff involved in delivering care. Once thishad happened a number of changes wereput in place as a direct result. These werecommunicated to the complainant so theycould see real action had been taken as aresult of them telling their story. This wasshared with the executive team via a report.” (Acute Trust, West Midlands)

Whether at Board level or more generally across theorganisation, a wide range of service improvements havearisen from discussions of patient stories;

Staff training and development As a result of using patient stories, many trusts have nowaltered the structure, content and delivery methods for

staff training. Responses confirmed that a number oftrusts now run awareness sessions, customer caredevelopment sessions or use stories and involve patientsthemselves within the delivery of customer care training.

“Mr B, a patient who raised many issues withus regarding care on one of our surgicalwards, offered and has now been workingwith our Chief Nursing Officer and nursingstaff on wards in workshop settings toimprove the services in line with some of hissuggestions for improvement: as well as theDVD capturing his experience beingmandatory awareness training for ALL staffand dementia training (different levels ofdetail and duration) being mandatory aswell.” (Acute Trust, West Midlands)

In some trusts, the dissemination of patient stories hasresulted in changes to the core procedures and processeswithin the organisation. Some examples include revisedcomplaint handling procedure, new call categorisationprocedure and changes to recruitment process.


Patient stories and service improvements

Patient stories and service improvements (continued)

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“Professional Development Nurse XX gavekey lessons to the Board. XX provided detailsof a patient who was a regular user of theTrust’s services because of a complex medicalhistory. Whilst complimentary of the medicalcare received, he raised concerns with regardto infrequent visits to the side room in whichhe was placed and not being provided withdischarge information. XX provided details ofhow the particular incident had beenaddressed and how this had been addressedmore widely across the Trust. This focussed onimproved leadership, using the 10 pointdignity plan, providing consistency of carersand involving the patient in the dischargeprocess.” (Acute Trust, East of England)

Service changes As well as changes to staff training and changes inprocesses, many trusts have used patient stories totrigger major service re-designs, new serviceintroductions as well as re-evaluation of services. Someexamples include new acute oncology nurse service andan enhanced recovery programme.

Many trusts have also seen changes to their carepathways including those of maternity services, mentalhealth and learning disability services and older person’sservices;

“Parents of a child with Down’s Syndromespoke about the lack of information available– the outcome was a clinician attended theDown’s Syndrome group and the parentswere involved in the redesigning of theDown’s care pathway - and supported thelaunch” (MH Trust, East Midlands)

Changes have happened at both strategic levels andoperational levels with many changes directly happeningat ward level. Amongst many of the examples cited theseinclude changing noisy apron dispensers, upgradingshower facilities, increasing access to single roomaccommodation and upgrading menu cards.

Other improvements and outcomes from patient storieshave centred on:• New improved environment and/or equipment • Staff post creation or staff/team re-organisation• Development of new tools and aids such as improved

communication tools .

“Particular themes have also emerged e.g.that fluid balance was not being welladdressed for some patients which led toboth policy and practice changes throughoutTrust” (Acute Trust, West Midlands)

“Examples are the development of 4 trustwide projects all based on patient feedback -noise at night, pain and comfort, attitudesand behaviours of staff and patientinformation. Improved outcomes have beenevidenced by improved patient survey resultsin these areas.” (Acute Trust, East Midlands)

“Ward nursing team reorganised and splitinto 3 distinct teams to enhance continuity ofcare and communication. Staff attendedbespoke customer care training sessions. Inresponse to the complainant saying she wasnot aware how to escalate concerns throughmedical/nursing channels, a communicationnotice has been displayed at the end of eachbed and information placed in theadmission/discharge information booklet.This information advises that concerns can beraised with the nursing and medical staff onthe ward. If not resolved these concerns canalso be discussed with the Ward Manager,Matron or Consultant.” (Acute Trust, West Midlands)

“Patient complaint which was investigated asan SUI related to a patient admitted withlearning disabilities resulted in thedevelopment of pictorial communicationtools on all ward areas, full time employmentof a learning disability nurse for the acutetrust, a fast track identification and referralpathway for all patients admitted with L&D,in-house education programme for MDTstaff.” (Acute Trust, East Midlands)


Moving forward

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In many cases, organisations have already integratedpatient stories within their organisation, especially so atBoard level. In those instances, respondents said they aremainly keen to integrate patient stories more widelyinternally and promote a wider range of stories.Respondents suggested areas for further developmentincluding:

• Encouraging Clinical Commissioning Groups to includepatient stories in their wider work

• Developing the range of stories presented (e.g.including children and young people)

• Disseminating stories wider than Board level (e.g. localward level, sub-committees, equality and membershipcommittees)

• Standardising the approach – Inclusion of patientstories in all staff development and customer caretraining programmes

Given the limited number of responses, is it suggestedthat there are many organisations that appear to have asyet integrated and embeded patient stories within theirorganisation.

Whilst those surveyed agreed that the use of patientstories can act a catalyst for improvement and change itis clear that for some organisations the use of PatientStories is still at its infancy and with the first step beingtaking patient stories routinely to the Board.

Collaborative working withother agencies From the survey responds most confirmed that theycurrently have no plans to develop joint stories withhealth and social care colleagues, although many agreedthis is a good idea and would consider this in the future.

There are however organisations who have and doengage local authorities and other local agencies inlearning from patient stories when relating to a specificcondition or age group e.g. Age UK, Alzheimer’s Society.

Resources and support fororganisations Many organisations did not rely on specific documents orresources when developing the use of patient storieswithin their organisations. Many relied on theinformation gleaned through complaints and otherpatient experience sources and as such processes andapproaches have evolved over time.

However, there appears to be some key resources thatwere used by a small number of organisations indeveloping their approach. These include a ‘How to’guide to using patient stories with Boards (by PatientSafety First) and the Burdett Nursing Trust Patient StoriesChecklist (attached within Annex A).

Organisations were also asked what support and/ormaterials would be most useful to support their work inthis area. Clearly, the largest need from organisationswas to hear about how other organisations are usingpatient stories and also, how this is driving serviceimprovements.


Useful lessons learnt and advice from organisations

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There were a number of key hints and tips fromorganisations about what is important for trusts andCommissioners looking to develop patient stories as partof a broader patient experience strategy. These include:

Supporting patients and the Board Undeniably, the most recurrent advice is that the rightlevel of support needs to be given to both patients andthe Board when discussing patient stories at the Board.Patients need to understand the context they arestepping into, understand the expectations and getenough support both before and after they attend theBoard Meeting to ensure they feel comfortable. In thesame way, the Board needs to be supported andeducated to prepare to receive patient stories as well asunderstand their validity and purpose.

“You need to allow adequate time tosupport individuals to share theirexperiences. It can be daunting for laypeople to be confronted by a full Board and Imeet with all of the people beforehand tohelp them plan what they are going to say. Ialso make notes of the most important pointsthat they want to make sure they cover, sothat if they become distressed, or forgetsomething on the day, I can remind them ofwhat they wanted to emphasise.” (PCT Cluster, West Midlands)

“Time spent with the patient/carer ahead ofthe meeting is well spent as they feelempowered and engaged to a greater extentthan if left to just appear on the day.Following up is also vital - to ensure they arethanked and also to know what happenednext.” (Acute Trust, East of England)

“If we ask patients or relatives to come to theBoard we need to be very clear with themabout what to expect and what the purposeof telling the story is. They need to beproperly greeted and made to feel at homeand not intimidated by the setting or style ofthe Board meeting/room. Simple things like amore informal room layout and making sureeveryone introduces themselves. Patientstories from 'the horses mouth' are verypowerful but also very emotive and sensitivefor those individuals” (Acute Trust, West Midlands)

“If you are going to have people at theboard you need to pick the 'right' people asit can be very intimidating for them. Theyneed to have a key person to link with whowill help them through the process.” (Acute Trust, East Midlands)

“Be prepared to invest enough time in yourpatient stories (working with thepatients/carers and staff involved).Prepareyour Board well before doing any patientstories - it's not a witch-hunt or about sackingpeople!” (Acute Trust, West Midlands)

Creating a balance of stories As referenced in previous sections, a large number oftrusts also feel that it is very important to have a goodbalance of patient stories to cover both positive storiesand negative stories. There are lessons that can be learntfrom both and positive stories can be very motivating forstaff at all levels. Interestingly some organisations takeboth the positive and less positive stories to the samemeeting to understand and address variation ofexperience.

“Try to have a balance, e.g. I once read out 2stories – one good one bad – from sameward and same period. NEDs were shocked.” (Acute Trust, West Midlands)

Some trusts advised that it is important that trust do notsolely focus on stories obtained through complaints,incidents or ward visits – which appears to be the currenttendency by a number of respondents. Instead, thereshould a structured methodology for accessing patientstories that come from all services and are linked back tothe organisations strategic drivers/goals. As many peopleas possible should be involved to ensure that stories aremade part of the strategic approach of an organisation,that these are embedded at all levels and become part ofthe culture for improving the customer servicesexperience.

“My advice would be to ensure that there is abalanced approach to patient stories usedand that using complaints is not always thebest way although this does have its place.Ensure that the stories are from all services toensure that context and understanding ofimpact of what the organisation does andcontributions made by teams is evident. Linkback to strategic drivers and goals of theorganisation and allow time to ensure theboard then discusses what if any learningthere is” (Community Trust, West Midlands)


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Face to face interaction (added value)A large number of organisations also detailed the needto use face to face patient and Board interaction as far aspossible as opposed to written, auditory or visualformats. While the latter are helpful, inviting patients tocome in and giving them the ability to ask questions canbe a more powerful experience for both the organisationand for patients.

“Interestingly the use of DVDs is lesssuccessful. The ability of the patient to askdirect questions of the board and the boardto question (if the person is happy to receivequestions) is far more powerful. The processwe use is, I as Chief Nurse have a conversationwith the patient with the board listening inand that works really well.” (MH Trust, East Midlands)

“We wish to move from purely staff-identified stories and towards invitingpatients or their family/carer to representthese stories (either face to face or viarecording), and to integrate this type offeedback into existing mechanisms to driveservice change.” (Community Trust, East of England)

Resource commitment Another key learning from organisations is not tounderestimate the amount of time needed to use patientstories in a way which enables maximum benefit.Organisations should be prepared to invest enough timeand resources into embedding patient stories within theorganisation. For example, the impact of using patientstories in training and/or when communicating issuesaround patient experience is powerful, but the timeinvestment can be considerable.

Other advice and examples of innovation Trusts who responded to the survey also suggested thefollowing as key sources of advice for organisationswishing to use patient stories;

• Aim for stories to showcase the contributions made bylocal teams and the impact on the organisation

• Be careful that one story does not become a singlefocus for an organisation

• Encourage local experience events to enable localteams to experience a wider group of service users

• Use wide range of media to keep momentum going • Have a framework which clearly explains what you

trying to achieve • Incorporate patient stories into the existing mechanisms

to drive change.

In addition, some key examples of innovation and howstories are being used in practice include;

• The use of ‘Live Patient Stories’ presented in a chatshow format at Board Meetings (LeicestershirePartnership NHS Trust)

• The presentation of patient story DVD’s, and filming ofstaff responses to these, at training events (Heart ofEngland NHS Foundation Trust)

• ‘In your shoes’ events incorporating patient stories,generally delivered directly by patients themselves, tofacilitate greater understanding of patient experienceamongst staff members (Walsall Healthcare NHS Trust,Nottingham University Hospitals NHS Trust, South EssexPartnership NHS Trust)

• ‘Complaints and Compliments Analysis’, wherebypatients are invited to share their stories andexperiences relating to a particular compliment orcomplaint and staff are encouraged to first solely listento the patient and then subject this to further analysisin a team training session (Leicestershire PartnershipNHS Trust, Heart of England NHS Foundation Trust).

These highlight approaches to patient stories which could be adopted across organisations and which offerpotential benefits such as improvements to services, staff training and, overall, an increased focus on patientexperience in line with the broader patient revolutionagenda.


Conclusion

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There are a number of clear observations relating to theuse of patient stories across the Midlands and East NHSas a result of the online survey and the deeper dive casestudy interviews;

The use of Patient Stories across the Midlands andEast is a relatively new technique

Of all trusts reporting the use of patient stories, only asmall number of trusts stated that they had been usingpatient stories for more than 2 years. For most trustspatient stories are a relatively new technique forcapturing and learning from patient experience and issomething which has been introduced as part of a longerterm strategic approach to improving patient experience.From the limited number of responses from PCTs, it isunclear as to how committed commissioners are intaking patient stories to the to the Board.

Patient stories are valuable in supporting qualityimprovement discussions from Board to Ward.

Patient stories are used across a range of clinical areasand cover a range of issues, such as patients with specificcare needs, particular social groups such as children orolder people, and other issues relating to patientrequirements and experience. Within these areas, patientstories are incorporated into both departmental and wardspecific feedback, staff training and Board leveldiscussion/presentations.

A wide range of methods for capturing anddisseminating patient stories are in place across theMidlands and East

A range of methods are employed to capture patientstories, from paper based methods such as feedback formsto more visual approaches such as video and audiorecording or photographs documenting patient experience.The way in which these are collected varies across theTrusts, with some indicating that they principally rely onpatients offering these through feedback mechanisms suchas compliments or complaints, whilst others seek to gathersuch information themselves through staff trained to collectpatient stories, feedback received by staff on wards and indepartments and ward visits conducted by senior staff andBoard Members. Patients are keen to share their storiesexamples cited where registers of stories are in place tomanage the number of patients who wish to share theirstory with the Trust.

Hearing directly the ‘voices of patients’ enablesgreater understanding of the issues affectingpatients and brings reported experience to ‘life’Conveying patient stories was also an area in which arange of methods were employed across the Trusts. A

sense that face-to-face, or ‘live’, patient stories were aparticularly effective way of presenting these was evidentfrom the survey and reinforced in trust case studies. Thekey benefit to this method was identified in terms ofmaking the story ‘real’ for those listening to it andbringing this story to life for the audience. This wasconsequently seen to enable greater understanding,particularly were additional engagement and analysis wasundertaken by the Trust.

Integrating patient stories, whether delivered ‘live’ by thepatient or through another medium such as writtenfeedback or DVD’s, into staff training was anotherprincipal way in which patient stories were conveyed andutilised. This was highlighted as a key application ofpatient stories, and one which offered great potential interms of instigating change and, most importantly,improvements in terms of service delivery and patientexperience.

Celebrating and learning from positive experiencesis as valuable as learning from less positive patientstories

The need to select patient stories which reflect bothpositive and negative experience was something whichwas reflected in the survey results and reinforced in casestudy findings. Despite trusts generally stating that abalance should be struck between positive and negativeexperiences in order to reflect all aspects of services andfeedback, examples provided by trusts tended to focuson stories which capture negative experiences.

Evidently, the method of feedback collection can impacton the nature of patient stories e.g. those sourced fromcomplaints tending to lead towards negative experience,however feedback from some trusts suggests thatdifferent approaches towards story gathering, such asward visits, actively engaging various groups of patientsacross hospitals or presenting anecdotal stories orfeedback given to staff members during their day-to-daywork, may therefore enable a more balanced view. Theimportance of striking this balance was reflected withinsupporting case studies, with a number of trusts statingthat they consciously try to achieve this balance betweenpositive and negative feedback, and use this to identifyboth good practice and areas for improvement.

There are some tried and tested good practice tipsreadily available for taking Patient Stories to theBoard

A range of methods for presenting patient stories atBoard level was evident throughout the survey findings,and also supported by case studies from individual trusts.Face-to-face, or ‘live’ patient story presentations, with the


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patient themselves relaying their experiences, wassomething which was often used and felt to be positivelyreceived as a means of sharing patient stories at BoardMeetings. Other methods used include staff presenting aparticular story relating to one of their patients, readingpatient letters or written feedback, DVDs or the thematicpresentation of patient experiences and stories by amember of staff.

Whilst most approaches were developed throughexperience, some NHS Trusts across the West Midlandsbenefitted from engagement in the Burdett Trust forNursing Board Development Programme which as part ofits approach to strengthening the focus on qualityamongst NHS Boards developed and tested a range ofchecklists including a checklist for taking patient storiesto the Board. (See Annex I)

The benefits of Patient Stories are wide reaching

Patient stories were seen to be beneficial for staff, BoardMembers and patients across the Trusts. For staffmembers, these benefits principally related to anenhanced understanding of patient experience, learningand development as a result of this on both an individualand organisational level. Such benefits were echoed atBoard level, with this having the additional impact andbenefit of helping to ground high level decision makingin patients’ realities and experiences. For patientsthemselves, sharing their stories was seen to be beneficialin terms of empowering the individual and enablingthem to have a ‘voice’ and to consequently have animpact on the services they use. Supporting case studiessuggest that in some trusts patients were particularlykeen to share their stories with the organisation. Thistherefore demonstrates that this is something thatpatients see the benefit of and wish to be involved in.

Stories provide ‘real’ insight in support of serviceimprovement

Insight from the review confirms that patent stories havea valuable role in influencing service changes andsupporting quality improvements. Respondents were clearthat changes and improvements as a result of usingpatient stories were evident in the development of stafftraining and development, organisationalprocesses/procedures and improvements to servicedelivery. The influence of patient stories was characterisedby the level of insight into ‘real’ patient experience thatthis method of feedback offers, highlighting both areas ofgood practice from which learning can be shared/spread and areas for improvement.

Changes and improvements as a result of the use ofpatient stories were identified throughout the trusts,from Board to Ward level. This demonstrates the wideranging impact that patient stories can have in terms ofinstigating positive changes and improvements withinNHS Trusts and aligning these with the broader PatientRevolution Agenda.

Embed patient stories to create a patient andcustomer services culture.

Patient stories are seen to be in the process of beingintegrated and embedded across many of the Trusts,particularly at Board level. Whilst being evidenced astaking place in some of the Trusts, ensuring that patientstories are utilised to their full potential and whollyintegrated into all aspects of service delivery andimprovement is therefore a key focus for many trustsmoving forward.

Individual Trust case studies highlighted a range ofinnovative approaches to using and embedding patientstories as part of approaches to create a patient andcustomer services culture. This includes going beyondsimply presenting stories to the Board and seeking toanimate these experiences for staff at all levels throughembedding into staff development and training,departmental and ward feedback discussions andencouraging enhanced engagement of patients andcarers as part of their overall approach to creating apatient/customer services centred culture.


Annex A

Patient Stories Checklist for Boards

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BackgroundDuring 2009-2011 NHS West Midlands commissioned aBurdett Board Development Programme within NHSorganisations across the West Midlands. The aim was tostrengthen the Boards focus on quality and safety duringtransition.

The West Midlands SHA programme report ‘Sustainingquality during turbulent times; Helping Boards within theWest Midlands to Focus on Quality During Turbulent Times’,outlined a number of keystones, in the form of checkliststhat can help anchor a board’s attention to quality.

One of those keystones: The Patient Stories Checklist wasdeveloped and tested with NHS Trust across the WestMidlands as a series of prompts designed to provokeconversation and reflective review of the attention givento quality and the use of Patient Stories by boards.

The Patient Stories Checklist was been suggested by anumber of respondents to the ‘Online Survey of PatientStories across the Midlands and East NHS’, cited as avaluable resource in supporting the use of Patient Storieswithin Board meetings.

In light of key recommendations from the second FrancisReport into Mid Staffordshire NHS Foundation Trust andin the transition to new structures within NHS, it hasnever been more timely that organisations and CCGsremind themselves of The Patient Stories Checklist andconsider its application in support of the use of PatientStories with Board meetings.

Whilst originally developed for NHS Trusts, this PatientStories Checklist is equally applicable to bothcommissioners and providers moving forward.

Taking Patient Stories to the Board

Patient stories can reveal a great deal about the quality ofservices, the culture of an organisation, and theeffectiveness of mechanisms to manage, improve andassure quality. They also serve as a powerful reminder toorganisational leaders of their accountability for quality.

Patient stories can be delivered by patients or theirrelatives, or staff can tell the story from a patient’sperspective, together with what it is like to be a memberof staff involved in that persons care.

Good practice is to start the board meeting with a patientstory. There is a risk, however, that by hearing a patientstory at the start of a meeting, it will take place before theboard has settled into its task. Stories can also triggerstrong emotional responses in the listener, which need tobe anticipated and managed. Patient stories may be morelikely to meet with resistance during times of upheaval, asstaff become anxious about their futures and less able torespond constructively to stories that show theorganisation, or their practice, in a negative light.

It is therefore essential that patient stories are precededby careful planning, so that everyone is prepared for thestory they are about to hear and understand the purposeof sharing it.

Good, well-structured facilitation by the Chair shouldhelp in priming the board to listen to patient stories andfor the anxiety they may evoke. Executive cliniciansshould be instrumental in helping to facilitate the session,manage board members’ responses to the stories theyhear, and help the board identify the actions and learningthat fall out of the story.

The Patient Stories checklist that follows is designed tohelp support good preparation for and facilitation ofpatient stories in board meetings.


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Patient stories checklisPreparation

What is the purpose for our board of hearing patientstories?

• To understand the impact of causing harm to a patient?• To use stories to set priorities?• To nurture a quality-centred culture?• To road-test the organisation’s quality assurance

mechanisms?• To explore how decisions made by the board impact on

patient experience? • To improve our understanding of how harm happens?

Why are we hearing this particular story?

• What sort of story is it?• How has the story been selected?• What type of emotional response might the story

evoke?• Will the story show the organisation/staff negatively? • What questions need to be surfaced from this story?

How is the item going to be managed?

• Who is going to lead this item?• How is the story going to be told (e.g. verbally,

PowerPoint, audio recording, film)?• If a patient or relative is going to tell the story in

person, what preparation have they been given andwhat support do they need during the meeting?

• If a staff member is going to tell the story what supportmight they need?

• What preparation will board members need to ensuretheir questioning is appropriate?

• How much time will be needed for this item?

Discussion

What does this story add to our understanding of thequality of our services?

• How does the story relate to the information containedin our quality or performance report?

• What does this story tell us about progress towards ourquality improvement goals?

• What additional information does the board require tohelp it make sense of the story / put it in context?

What does this story reveal about our staff?

• What does it suggest about morale and organisationalculture?

• What does it reveal about the context in whichclinicians work?

• What does it reveal staff attitudes to harm?

What actions need to be taken as a result of what wehave heard?

• What needs to be done immediately to make thingsright for the patient and prevent a recurrence for otherpatients?

• What implications does it have for board decisions?

Review

How did we do in hearing this story?

• Did we give enough time to this item?• Were we sufficiently prepared?• What could we have done differently?

Does this story raise any learning needs for boardmembers?

• What additional support do board members need inhearing patient stories?

• Do board members wish to find out more about theprocesses for examining failures (e.g. significant eventanalysis, root cause analysis)?

• Has the story evoked anxieties that members wish totalk through outside of the meeting?

Additional key considerations for Boards arising fromfeedback from organisations in the use of Patient Stories;

• What additional support do board members need inhearing patient stories?

• Do board members wish to find out more about theprocesses for examining failures (e.g. significant eventanalysis, root cause analysis)?

• Has the story evoked anxieties that members wish totalk through outside of the meeting?

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Other Useful ResourcesUsing patient stories with boards, Patient Safety First Campaignhttp://www.patientsafetyfirst.nhs.uk/ashx/Asset.ashx?path=/Intervention-support/Patient%20stories%20how%20to%20guide%2020100223.pdf

Guidelines for telling ‘patient stories’ with boards of directors, Delnor-CommunityHospital, Geneva, Illinois, USA. Institute for Healthcare Improvementhttp://www.ihi.org/IHI/Topics/LeadingSystemImprovement/Leadership/Tools/GuidelinesforUsingPatientStorieswithBoardsofDirectors.htm

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