Learning from deaths: one year on 14 December 2017
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Welcome Mrs Celia Ingham Clark Medical Director for Clinical Effectiveness, NHS England and Interim NHS National Director of Patient Safety NHS Improvement
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Working with families as partners Josephine Ocloo and David Smith Family Members Learning from Deaths Programme Board
Compassion and Living Your Values Treat people with respect, kindness, care and compassion - too many people feel they didn t have this experience at the worst time of their lives. Families should be listened to and believed; not treated as the problem. Staff should recognise that families are grieving - they need to be mindful of their language and never disparaging. Staff need to recognise that when families speak up, they re only seeking the truth - don t simply tag them as troublemakers. 10
Communication Families will only hear the news that their loved one has died once. Clarity - a need to talk in plain understandable language. Transparency, openness and honesty must underpin all communication. Timescales should be clearly agreed with families and adhered to. Need consistent and clear communication with families. Need information about how to access medical and other records. Easy infographic guides and checklists should be provided for families. 3
Independence of Investigatory Systems Too many families find themselves having to become detectives. Deaths investigated if families push needs someone else to push. Families feel they have to fight against a culture that places corporate defensiveness above a corporate concern for the truth. All investigations must be and be seen to be independent. Regulators should sign up to principles of independence and transparency and not close ranks. Be honest lost notes etc. are seen as indicators of cover ups.
Imbalance of power The power imbalance can t be underestimated. Compared to families, Trusts have significant finance and resources, including: Legal support Understanding and control of : the processes the technicalities of the system the language of clinicians and NHS speak And Trust staff have access to support - families have to find their own The playing field must be levelled. 13
Empowering families Families should be central in investigations and treated as equals. Need a person-centred approach; a sympathetic environment; and respect for patient rights. Need a right to access all key information/medical records; and funded legal advice. Need strong sanctions when medical records are lost or missing. The CQC should contact and engage with families where there s been an Serious Incident (SI).
Empowering families (continued) Families need increased levels of independent support across the process, including: Free advocacy/support and signposting to the right information A person to support them in establishing the truth Ability to request a coroner from outside the local area; or post mortem by another Trust Counselling for families A review of PALS/Family Liaison Services
Balancing Learning and Accountability Families want learning but feel they also have a right to accountability. CULTURE change is essential in moving things forward and requires strong leadership. There should be penalties and sanctions when wrongdoing occurs and rewards for learning Being human - the culture is set from the leadership of the organisation. Saying sorry is important BUT it has to be genuine. Learning within one Trust needs to be shared with others. 7
Reflections on the journey so far Philip Dunne MP Minister of State for Health
Reflections on the journey so far Professor Ted Baker Chief Inspector of Hospitals Care Quality Commission
Embedding learning from deaths within the work of trusts Dr Nigel Kennea Consultant Neonatologist and Associate Medical Director St George s University Hospitals NHS Foundation Trust
Learning from Deaths - Building processes to support and learn Dr NL Kennea Associate Medical Director St George s Hospitals NHS FT
Summary of Presentation What we wish to achieve Challenges Our experience, what we have learned Future plans
What we wish to achieve Learning from deaths is about doing the right thing Building systems to understand deaths and support improvements Open information and family involvement Data and information / reporting Vital to link mortality review work to other Trust governance structures / processes to fully support families and improve care The case review is the start not the end of a process
Challenges Time and timeliness of case reviews / Independence of review Defining value amongst other quality measures (Reporting vs Learning) How best to involve and support families Health systems are complex Care pathways / other providers Build systems to collate information and learn Majority of case reviews have learning
Developing Processes All deaths reviewed in local M+M Service level mortality reviews Trust level mortality reviews
Trust-level Processes Identification of deaths and timely case review Support of families and processes in bereavement office Feed into essential work relating to specific patient groups Rapid escalation of care issues to drive change and learning Collation of data and Board-level oversight / challenge
Unadjusted mortality timely data
Unadjusted mortality timely data
Trust-level Processes Consultant review of deaths in bereavement office from case-notes (all reviewers trained in RCP review methodology) Seamless and timely escalation to clinical team and trust-level governance structures for investigation and/or learning Clear and sensitive communication with families IT systems and dedicated manager to collate data and information
Reviews of Deaths 160 140 120 100 80 Reviewed 60 40 20 0 Apr May Jun Jul Aug Sep Oct Nov
Cases reviewed since April 833 full case notes reviewed 38 child deaths (15 NNU,16 PICU) 7 deaths notified to LeDeR programme 8 deaths in patients with mental health diagnoses 63 cases escalated for local investigation / action 11 case reviews identified potentially significant care issue requiring highlevel investigation 11/833 = 1.32%
Proportion of reviews Interval between death and case review 40 35 30 25 20 15 10 5 0 0 1 2 3 4 5 6 7 Number of days Data: Sept Nov 2017
Benefits of early independent case review Identify and support families with immediate concerns Early identification of care issues that require action / investigation Adverse incidents Interaction with other health providers Support improved bereavement processes Death certification Coroner s referral Support specialist mortality review programmes
What we have learned Efficient bereavement processes improve experience of families Open culture of asking and creating mechanism for families to raise concerns is helpful poster, booklet, survey, email Teams and other providers appreciative of rapid feedback Abundant opportunities to learn and improve the need to develop systems to triangulate information Issues of care contributing to death are fortunately rare. Strong central team enables timely data collection and reporting
Examples: Learning from recent case reviews Communication / Escalation ITU escalation / care planning / end of life care Handover / Transfer of care Inter-hospital referral Documentation Community dialysis patients NG tubes Operative risks / MDT involvement / consent Processes of care Out of hospital arrests Sepsis bundles Thrombectomy
Future Plans Enhance family communication and support Ensure care group review processes strengthened - further training Monitor the learning ensure sustainability champions Ensure seamless feed into other trust governance and improvement work Work with other providers
Summary Mortality data is one of several important quality metrics Timely case note review is an important way of identifying, and learning from, problems in care and supporting families Many care issues may (should) be identified by other routes Focus needs to be on improving care and learning Case mix and care pathways adds complexity Challenges in managing processes, data and outcomes
http://blogs.bmj.com/bmj/2017/11/02/ollie-minton-et-al-learning-from-deaths/ learningfromdeaths@stgeorges.nhs.uk
Embedding learning from deaths within the work of trusts Dr Andrew Gibson Consultant Neurologist and Deputy Medical Director Sheffield Teaching Hospitals NHS Foundation Trust; and Clinical Lead for National Mortality Case Record Review
Learning From Deaths Dr Andrew Gibson Dr Paul Whiting
The Challenge PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
People, Process & Technology in our Current System PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Elements of a model QUEST Cardiac Arrest reduction Medical Examiner role Informatics and Modelling Mortality Group Yorkshire and Humber AHSN Structured Judgement Review Mortality Governance Committee PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
People, Process & Technology in the Current System Medical Examiner role PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Medical Examiner Our experience to date in Sheffield Independent Considerable expertise in reviewing inpatient and community deaths Invaluable in liaising with families and highlighting/alleviating concerns Key in quickly identifying concerns with care that may have contributed to or caused death, that require further timely review 23,000 Deaths Reviewed Family concerns identified in 2.3% of deaths Concerns with care in 9% of all deaths PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Medical Examiner Dataset includes Emergency/elective Cause of death Incident reports Safeguarding Learning disability Narrative of events DNACPR status Hospital acquired infections Coroner referral/decision Attending doctor concerns Medical examiner concerns Family concerns Referral to clinical governance/medical Directors Office PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
How did we bring it all together? QUEST Cardiac Arrest reduction Structured Judgement Review PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST Medical Examiner role Learning From EVERY Death model Informatics and Modelling Mortality Group Yorkshire and Humber AHSN Mortality Governance Committee
How we say something about every death at STHFT Medical Examiners Office Review of the death within 24 hours National/HES/SHMI/HSMR Data alerts Medical Director / Nurse Director SUI Group Immediate Escalation Yes Review using SJR methodology within 72 hours Was the death felt to be avoidable? Secondary Review Was the death felt to be avoidable? SJR Review Indicated No No No Learning from the review collated for further escalation and reporting Review Process Mortality Governance Committee/MD and Chief Nurses Office Healthcare Governance Committee Quarterly Review and Board Report Present to SRMB, HCG, Board, Inform further Trust wide and Local Service/Quality improvement
Our key priorities when developing a model Board level engagement Non-Executive oversight Medical Examiner at the core Ensure independence and timeliness Informed Quality Improvement Family involvement Shared ward, Trust, regional and national learning Quality assured Robust and sustainable PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Resource to ensure ALL deaths have a Medical Examiner review All those with concerns have an in-depth independent SJR review Concerns are escalated in a timely manner Central oversight and dissemination of the learning from ALL deaths Involvement of families from the earliest opportunity PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Barriers and Difficulties Resource allocation Training and Recruitment Competing Priorities QI processes PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Resource Modelling PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Resource Modelling COMPLEX! PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Summary A national journey of learning from deaths This is not resource neutral Promote iteration and evolution This is the model that we have chosen, but one size does not fit all PROUD TO MAKE A DIFFERENCE SHEFFIELD TEACHING HOSPITALS NHS FOUNDATION TRUST
Q&A WIFI network: NHS Improvement WIFI password: LearningFD2 Glisser: glsr.it/lfd2
Table discussion WIFI network: NHS Improvement WIFI password: LearningFD2 Glisser: glsr.it/lfd2
Refreshment break WIFI network: NHS Improvement WIFI password: LearningFD2 Glisser: glsr.it/lfd2
Working with families to improve care and support Katie Siobhan Family Member Olivia Butterworth Head of Public Participation, NHS England
Learning from Deaths Working with families as partners Katie Smith, Family Member and Olivia Butterworth, Head of Public Participation, NHS England
Where have the questions come from? NHS England held a two-day event in November ~ 75 family members and advocates involved NHS England invited ~30 family members to be involved in today s event Two x 2.5hr webinars recently held with these families to decide on the questions for today NHS Improvement have further added their questions to these 59
What we d like you to do: Each table has been allotted two questions each. If you have time, you can choose a further question. A family member will introduce each question and might possibly explain their related experience. As before, please then write your comments on cards (about 5-9 words on each one). Plenary: Your table facilitator will have less than two minutes to feedback please agree on two key points or actions per question. 60
Question Themes: Perception of recourse solely for financial recompense. Independence for investigators. Creating a just, open and learning organisational culture. Access to independent advice, advocacy and support. The power imbalance between families and organisations. Listening to and involving families and carers before things go wrong. Truth and reconciliation for harmed families. How will trusts demonstrate their words. 61
Last, but not least: Please be open warts and all! Please consider: What do you / your trust currently do? What gets in the way of doing the right thing? What support do you need? How can you address these questions locally with families and carers? 62
Table discussion WIFI network: NHS Improvement WIFI password: LearningFD2 Glisser: glsr.it/lfd2
Plenary feedback and discussion WIFI network: NHS Improvement WIFI password: LearningFD2 Glisser: glsr.it/lfd2
Lunch WIFI network: NHS Improvement WIFI password: LearningFD2 Glisser: glsr.it/lfd2
Providing leadership across the system Dr Emma Redfern Consultant in Emergency Medicine and Associate Medical Director, Patient Safety Dr Mark Callaway Consultant Radiologist University Hospitals Bristol NHS Foundation Trust
LEADERSHIP EMBED LEARNING INTO QI Mark Callaway & Emma Redfern
UHB PERSPECTIVE Learning From Deaths Process started in April Built a multidisciplinary team Developed a screening process Utilised SCNR Use the Medical director team to define avoidability Developed a method of identifying learning from deaths
OPERATIONAL PROCESS FOR MORTALITY REVIEW Automatic inclusion for SJR Elective care ( inc deaths on ITU) Patients with learning difficulties Patients under Mental Health Section 16-18 year olds Family concern s Alerts from risk management group Patients subject to Coroner s Inquest Additional Random selection SCREENING PROCESS Remainder of notes screened using standardised tool and if clinical issues identified then proceed to SJR Exclusion for SJR Non elective death on ITU/CICU Out of Hospital Cardiac Arrest Division Themes and scores collated at Divisional level Dashboard populated Feedback to Divisional Board Inclusion in specialty M+M In some cases feedback to family Structured judgment review Including assessment of more likely than not to have resulted from problems in healthcare If care scored at 1 or 2 then second review undertaken by MD office, and consideration for clinical incident/ serious incident reporting including Duty of Candour obligation Mortality Surveillance Group Additional information from ITU/CICU,Paediatrics/ O+G Dashboard review Cross Trust themes identified and fed to QI Academy Good Practice fed back to teams from MD office Reports Quality and Outcomes Committee Coal Face teams quarterly Mortality bulletin
QUANTITATIVE ANALYSIS 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% Admission and initial Management score 1' Admission and initial Management score 2' Admission and initial Management score 3' Admission and initial Management score 4' Admission and initial Management score 5' 0.0% Medicine Spec Svs Surgery/ITU
THEMES Learning From Deaths End of life care Senior review Senior decision making
WEASHN WHY MORTALITY REVIEW? Deteriorating patient workstream Cross system NEWS ED safety checklist Ambulance EpCR
WEASHN
HOW 7 acute trusts West of England Initial introduction meeting senior leaders & RCP Training meeting with RCP 3 trusts early implementers Cascade training across the region
COLLABORATIVE MEMBERSHIP Senior clinicians from 7 trusts Patient and public representatives General Practice Mental health trust AHSN
INITIAL MEETINGS Focussed on process Scoring Time needed clinician engagement Operational process mapping
SUBSEQUENT MEETINGS Themes fed back End of life recognition of in acute trusts, pre deterioration conversations in community Escalation April 2017 July 2017 1630 deaths screened, 499 reviewed
COLLABORATION Facilitates conversations with issues between acute trusts Non hostile feedback about issues in primary care medication etc
QI Deteriorating patient NEWS, EOL recognition Treatment Escalation plan, DNACPR Pre deterioration conversation Poor prognosis letters
IN FUTURE Review deaths within 30 days of discharge involvement of primary care Cross system QI Consider Respect form
QUESTIONS/ CONTACT Mark.callaway@uhbristol.nhs.uk Emma.redfern@uhbristol.nhs.uk
Providing leadership across the system David and Aldyth Smith Family Members Diane Hull Chief Nurse Dr Rick Fraser Chief Medical Officer Sussex Partnership NHS Foundation Trust
Learning From Deaths David and Aldyth Smith Diane Hull, Chief Nurse Dr Rick Fraser, Chief Medical Officer
Our Journey Our position not defending the organisation but defending what is right. Our philosophy of always involving the family. Recognising the important contribution family/carers make in the completion of investigations. Ethical responsibility to help the family/carers understand what has happened.
Focus of our work Rewritten our Serious Incident policy - family are now central to the process. Reviewed and rewritten our Root Cause Analysis Training. Reviewed all of our processes. Developed a range of ways we Learn from Deaths and share learning across the services.
Family Liaison Lead Developing a Family Liaison Lead Role
The family perspective Josephine Ocloo and David Smith Family Members Learning from Deaths Programme Board
Learning from Deaths Working with families as partners Josephine Ocloo and David Smith Family Members, Programme Board
Compassion and Living Your Values Treat people with respect, kindness, care and compassion - too many people feel they didn t have this experience at the worst time of their lives. Families should be listened to and believed; not treated as the problem. Staff should recognise that families are grieving - they need to be mindful of their language and never disparaging. Staff need to recognise that when families speak up, they re only seeking the truth - don t simply tag them as troublemakers. 91
Communication Families will only hear the news that their loved one has died once. Clarity - a need to talk in plain understandable language. Transparency, openness and honesty must underpin all communication. Timescales should be clearly agreed with families and adhered to. Need consistent and clear communication with families. Need information about how to access medical and other records. Easy infographic guides and checklists should be provided for families. 3
Independence of Investigatory Systems Too many families find themselves having to become detectives. Deaths investigated if families push needs someone else to push. Families feel they have to fight against a culture that places corporate defensiveness above a corporate concern for the truth. All investigations must be and be seen to be independent. Regulators should sign up to principles of independence and transparency and not close ranks. Be honest lost notes etc. are seen as indicators of cover ups.
Imbalance of power The power imbalance can t be underestimated. Compared to families, Trusts have significant finance and resources, including: Legal support Understanding and control of : the processes the technicalities of the system the language of clinicians and NHS speak And Trust staff have access to support - families have to find their own The playing field must be levelled. 94
Empowering families Families should be central in investigations and treated as equals. Need a person-centred approach; a sympathetic environment; and respect for patient rights. Need a right to access all key information/medical records; and funded legal advice. Need strong sanctions when medical records are lost or missing. The CQC should contact and engage with families where there s been an Serious Incident (SI).
Empowering families (continued) Families need increased levels of independent support across the process, including: Free advocacy/support and signposting to the right information A person to support them in establishing the truth Ability to request a coroner from outside the local area; or post mortem by another Trust Counselling for families A review of PALS/Family Liaison Services
Balancing Learning and Accountability Families want learning but feel they also have a right to accountability. CULTURE change is essential in moving things forward and requires strong leadership. There should be penalties and sanctions when wrongdoing occurs and rewards for learning Being human - the culture is set from the leadership of the organisation. Saying sorry is important BUT it has to be genuine. Learning within one Trust needs to be shared with others. 7
Address from The Rt Hon Jeremy Hunt MP Secretary of State for Health
Next steps Dr Kathy McLean Executive Medical Director and Chief Operating Officer NHS Improvement
Next steps
Personal reflections
Closing remarks Mrs Celia Ingham Clark Medical Director for Clinical Effectiveness, NHS England Interim NHS National Director of Patient Safety, NHS Improvement