Child Health Clinical Outcome Review Programme NCEPOD Marisa Mason Cardiff University Swansea University

History of the Child Health Programme 2003 - Confidential Enquiry into Maternal Deaths (CEMD) merged with the Confidential Enquiry into Stillbirths and Deaths in Infancy (CESDI) Formed the Confidential Enquiry into Maternal and Child Health (CEMACH) which later became known as the Centre for Maternal and Child Enquiries (CMACE) In 2010 – Clinical Outcome Review Programmes introduced Maternal deaths run by MBRRACE-UK Child Health-UK – RCPCH and UCL

Two studies commissioned as one project: Chronic neurodisability Young people’s mental health Two streams – data linkage and case note review Quality of care Interface between care providers Transition from child to adult services

Value added by the two approaches Data linkage will provide: Much larger numbers than can be peer reviewed An overview of existing datasets and what is and what is not currently available Questionnaires and case note review Depth of review that would not be possible from comparisons of large datasets Provide case studies and first hand views on quality of care to highlight the themes - both good and where it could be improved

NCEPOD Clinically led 30 year history of case reviews Medical & Surgical work Network of Local Reporters and Ambassadors Good engagement Impact resulted in national and local changes 5 5

Method A literature review – current guidelines Study Advisory Group Multidisciplinary Method Protocol and questionnaires Themes Aims Objectives

Common issues - organisational Pathways Protocols and policies Provision and distance of services Interfaces between different service providers Delays - diagnosis and treatment Training Use of existing guidelines Facilities for young people Family support and involvement Transition Safeguarding Transition Age of transition to adult mental health services (AMHS) Accessibility of services to young people “Lifespan” (joined up) vs. separate mental health services for young people and adults - (is there an ideal model?) Evidence of joint strategic planning between agencies responsible Extent of linked services which support handover from CAMHS to adult services e.g. from education and social care Appropriateness of services for needs of young people (environment and process)

Common issues - clinical Speed of access to care Speed of senior input Delays - diagnosis and treatment Continuity of care Appropriateness of treatment Use of existing guidelines Staff attitudes Co-morbidities Discharge planning

Chronic neurodisability Study population – cerebral palsies Age range – 0-25 years Clinical management Communication & decision making Nutrition Care of the sick CYP Palliative & EOLC Access to therapies Physical aids & monitoring Surgical care

Young people’s mental health Study population – Self harm, eating disorders, depression & anxiety Age range – 11-25 years Delays & barriers to referral Referral criteria Pathways & protocols Care in the emergency department Physical healthcare Communication Impact of stigma/bias Crisis care

Service user/carer questionnaire Chronic neurodisability Young people’s mental health Linkage of datasets Service user/carer questionnaire Organisational questionnaire Case identification Clinical questionnaire Case note review

Data linkage process

Data linkage The number of admissions and readmissions Primary reason for hospital admission Measures of morbidity The rates of consultation in primary care Educational achievement at KS1 and KS2 and the proportion of children with SEN

Data linkage challenges Gaining timely approvals Regional variation in datasets Ability to identify children with CP (ICD 80-83) Data cleaning Accuracy and completeness of data entry Variable severity of CP Keeping objectives focused

Service user/carer questionnaire Chronic neurodisability Young people’s mental health Linkage of datasets Service user/carer questionnaire Organisational questionnaire Case identification Clinical questionnaire Case note review

Service user and carer questionnaires Circulated via. existing networks What works well and what doesn’t What services should be available/how can they be improved Voluntary sign up for further contact with NCEPOD CP - 39 YPMH - >100 16 16

Service user/carer questionnaire Chronic neurodisability Young people’s mental health Linkage of datasets Service user/carer questionnaire Organisational questionnaire Case identification Clinical questionnaire Case note review

Organisational questionnaires -CN Emergency Department Inpatient care – paediatrics Outpatient care – paediatrics Community paediatrics Inpatient care – young adults Outpatient care – young adults Allied health professionals – paediatric inpatient care Allied health professionals – paediatric clinics Allied health professionals – young adult clinics Allied health professionals – young adult inpatient care 18

Organisational questionnaires -YPMH Trust/Health Board level To identify each of the individual services they offer e.g. CAMHS, psychology service, psychotherapy service, counselling service), the purpose of the service, and whether the service is specifically for young people.  Service level A random selection to gather detail that might be missed at Trust level Commissioning bodies 19

Organisational questionnaires Disseminated to all potential providers of care for the two groups of patients Different questions for different settings The findings will stand alone and be cross referenced with the clinical data where possible 20

Service user/carer questionnaire Chronic neurodisability Young people’s mental health Linkage of datasets Service user/carer questionnaire Organisational questionnaire Case identification Clinical questionnaire Case note review

Sampling – for peer review Chronic neurodisability ICD 10 codes for cerebral palsies over a 6 week period from 7th Sept – 18th Oct 2015 Young people’s mental health ED/EMU presentations with self harm, an eating disorder, depression and/or anxiety Data was collected prospectively over a 2 week period, from 7th March - 20th March 2016 Retrospective coded admissions for self harm, eating disorders and depression 22 22

Sampling – for peer review Chronic neurodisability – cerebral palsies 3296 cases identified 71 excluded (not cerebral palsy) 932 cases included Young people’s mental health Prospective - 6974 Retrospective – 9084 862 cases included 23 23

Service user/carer questionnaire Chronic neurodisability Young people’s mental health Linkage of datasets Service user/carer questionnaire Organisational questionnaire Case identification Clinical questionnaire Case note review

Clinical questionnaires A questionnaire sent to healthcare professionals involved in individual cases to provide Their opinion on the care provided and the services available for them to provide the care Factual data that may not be recorded in case notes Different questionnaires for different care settings 25

Clinical questionnaires Chronic neurodisability Admitting physician/paediatrician Lead (usual) clinician Young people’s mental health Assessing community/liaison mental health service Inpatient consultant psychiatrist (adolescent or adult) Treating community mental health consultant 26

Service user/carer questionnaire Chronic neurodisability Young people’s mental health Linkage of datasets Service user/carer questionnaire Organisational questionnaire Case identification Clinical questionnaire Case note review KW

Case note review A range of clinical data sources are being contacted to provide extracts of hospital notes, community paediatric, mental health trust, CAMHS and therapist notes etc Multidisciplinary group of reviewers – assessment form Produce a narrative Case studies

Challenges – case review Identifying cases and the pathways of care Collecting data Important - findings leading to recommendations 29

Publication Reports will be published in early 2018 Key outputs Full report including case studies and targeted recommendations Summary – executive and 2-sided Patient leaflets/ survey results Gap analysis toolkit Audit toolkits Organisational data Report launch

Thank you www.ncepod.org.uk @ncepod