Confidential Enquiry Congenital Diaphragmatic Hernia

Jenny Kurinczuk

National Lead – MBRRACE-UK

National Maternal, Newborn and Infant Clinical Outcome Review Programme

MBRRACE-UK collaboration

• Jenny Kurinczuk (NPEU) Perinatal Epidemiologist and Public Health Physician • Marian Knight (NPEU) • Elizabeth Draper • David Field (Leic) (Leic) Perinatal Epidemiologist and Public Health Physician (background in Obstetrics) Perinatal and Paediatric Epidemiologist Clinical and Academic Neonatologist _______________________________________________________________ • NPEU (Univ Oxford) Data collection hub and lead on the maternal work • TIMMS (Univ Leicester) Lead on the stillbirth and infant work

MBRRACE-UK collaboration

• Jim Neilson (Univ Liverpool) Clinical and Academic Obstetrician • Lucy Smith (Univ Leicester) • Brad Manktelow (Univ Leicester) • Judy Shakespeare (Oxford) • Peter Brocklehurst (UCL) • Sara Kenyon (Univ Birmingham) • Janet Scott (Sands) • Charlotte Bevan (Sands) • Ron Gray (NPEU, Uni Oxford) Medical Statistician & Health Services Researcher Medical Statistician General Practitioner Obstetrician and Clinical Epidemiologist Academic Midwife & Health Services Researcher Research Manager Research Officer • Maggie Redshaw (NPEU, Uni Oxford) Forensic Psychiatrist, Clinical Epidemiologist and Public Health Physician Psychologist and Health Services Researcher

The programme

•

• MBRRACE-UK collaboration is responsible for running the:

– National Maternal, Newborn and Infant Clinical Outcome Review Programme (MNI-CORP)

Aims:

– Deliver national surveillance and confidential enquiries to: • Assess quality and safety of maternity and infant health services • Support improvements in service quality through national learning • Produce evidence-based recommendations and good practice points • Influence clinical practice, service provision, health policy and clinical education

Achieve this through UK-wide:

• Surveillance of all stillbirths and neonatal deaths (1-28days) • Confidential enquiries of a

rolling programme of infant mortality and serious infant morbidity

• • Surveillance of all maternal deaths

(to 1 year from the end of pregnancy)

• Confidential enquiries of all maternal deaths

(to 1 year from the end of pregnancy) Confidential enquiries of a rolling programme of serious maternal morbidity

Achieve this through UK-wide:

• Surveillance of all stillbirths and neonatal deaths (1-28days) • Confidential enquiries of a

rolling programme of infant mortality and serious infant morbidity

– CDH the topic for the 2014 report • • Surveillance of all maternal deaths

(to 1 year from the end of pregnancy)

• Confidential enquiries of all maternal deaths

(to 1 year from the end of pregnancy) Confidential enquiries of a rolling programme of serious maternal morbidity

Mixed news

– Good news – some examples of excellent care – BUT lessons to be learnt – improvements in the delivery of care to be made – Much based models of best practice rather than evidence based guideline – Variation greatly in evidence – CDH – something of an evidence free zone

Acknowledgements

MBRRACE-UK collaboration

Marian Knight (Maternal Lead) Elizabeth Draper (Perinatal Lead) David Field (Perinatal Lead) Charlotte Bevan (Sands) Peter Brocklehurst Ron Gray Sara Kenyon Brad Manktelow Jim Neilson Lucy Smith Maggie Redshaw Janet Scott (Sands) Judy Shakespeare

MBRRACE-UK team (Leicester)

Pauline Hyman-Taylor Carole Bacon Alun Evans Janet Hood Caroline Ellershaw Hollie Burton Helen Jukes

MBRRACE-UK team (Oxford)

Sarah Lawson Peter Smith Carl Marshall Lucila Canas Bottos

Acknowledgements

MBRRACE-UK CDH TEG

Pamela Boyd Jonathan Coutts David Crabbe Carl Davis Alan Fenton Jane Herod David Howe Alyson Hunter Paul Losty Karen Luyt Tim Overton Nadia Permalloo Beverly Power Coralie Rogers Ann Tonks Juliet Wolfe-Barry

NIMACH office Belfast

Heather Reid Joanne Gluck Malcolm Buchanan

UKOSS & BAPS-CASS

Melanie Workman Maureen Frostick Anne Smith Patsy Spark

HQIP

Jenny Mooney Lorna Pridmore Tina Strack

Acknowledgements

• MBRRACE-UK Lead Maternity and Lead Neonatal reporters across all Trusts and Health Boards in the UK

Acknowledgements

MBRRACE-UK CDH Assessment Panel Members

Roshan Adappa Nargis Ahmad Joseph Aquilina Sybil Barr Kathryn Beardsall Ravindra Bhat Therese Bourne Lydia Bowden Pamela Boyd Sue Calder Helen Cameron Philip Chetcuti Simon Clarke Jonathan Coutts David Crabbe Carl Davis Medhat Ezzat Alan Fenton Tracey Glanville Sundeep Harigopal Jane Herod Janet Herrod Karen Hoover Davie Howe

Acknowledgements

MBRRACE-UK CDH Assessment Panel Members

Bryony Jones Andrena Kelly Sara Kenyon Manjiri Khare Morag Liddell Paul Losty Karen Luyt Nancy Mackeith Bill Martin Alan Mathers Majella McCullagh Penny McParland Anthony Moriarty Sandeep Motiwale Padma Munjluri Raji Parasuraman Andy Petros Cathy Roberts Coralie Rogers Stephen Wardle Helen Whapshott Melissa Whitworth Juliet Wolfe-Barry

Acknowledgements

MBRRACE-UK CDH Lay report writing group

Christine Whitehouse Charlotte Bevan (Sands) Melissa Green (Bliss) Beverly Power (CDH-UK)

Acknowledgements

MBRRACE-UK Independent Advisory Group

Catherine Calderwood (Chair) Janice Allister David Bogod Zoe Boreland Cath Broderick Roch Cantwell Richard Cooke Andy Cole Jaqueline Cornish Philip Cox Polly Ferguson Roshan Fernando Melissa Green David James Helen Dolk Alan Fenton Bryan Gill Mervi Jokinen Jim Livingston Heather Mellows Liz McDonald Edward Morris Heather Payne Nim Subhendar Michele Upton Jason Waugh David Williams

Acknowledgements

MBRRACE-UK PPI Stakeholders

Jane Abbott (Bliss) Beverly Beech (AIMS) Jenny Chambers (OC Support) Jane Denton (MBF) Jane Fisher (ARC) Pauline Hull (EC.com) Penny Kerry (Miscarriage Association) Beckie Lang (Tommy’s) Neal Long (Sands) Sarah McMullen (NCT) Jane Plumb (GBS Support) Andrea Priest (Best Beginnings) Gwynne Rayns (NSPCC) Jean Simons (Lullaby Trust) Cheryl Titherly (ARC) Maureen Treadwell (BTA)

MBRRACE-UK Stakeholders

Carmel Bagness (RCN) Patrick Cadigan (RCP) Hilary Cass (RCPCH) Paul Clyburn (OAA & RCA) Sanjeev Deshpande (BAPM) Denis Evans (NNA) Roshan Fernando (OAA & RCA) Jacque Gerrard (RCM) Steve Gould (BRIPPA) Diane Hulbert (CEM) Sarah Johnson (RCOG) Lucy McKillop (RCP) Lisa Nandi (BAPM) Lesley Page (RCM) David Richmond (RCOG) Jane Sandall (BMFMS) Neil Sebire (RCPath) Lorraine Tinker (RCN)

Funding

– Healthcare Quality Improvement Partnership (HQIP) on behalf of: • NHS England • NHS Wales • Health and Social care division of the Scottish government, • Northern Ireland Department of Health, Social Services and Public Safety (DHSSPS), • States of Jersey, Guernsey and the Isle of Man – Budget - perinatal confidential enquiry element: £180,800 per year