Maternal, Newborn and Infant Clinical Outcome Review Programme Saving Lives, Improving Mothers’ Care Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2015-17 November 2019 Maternal, Newborn and Infant Clinical Outcome Review Programme Saving Lives, Improving Mothers’ Care Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2015-17 Marian Knight, Kathryn Bunch, Derek Tuffnell, Judy Shakespeare, Rohit Kotnis, Sara Kenyon, Jennifer J Kurinczuk (Eds.) November 2019 Funding The Maternal, Newborn and Infant Clinical Outcome Review Programme, delivered by MBRRACE-UK, is commis- sioned by the Healthcare Quality Improvement Partnership (HQIP) as one of the National Clinical Audit and Patient Outcomes Programmes (NCAPOP). HQIP’s aim is to promote quality improvement and is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing, and National Voices. The Clinical Outcome Review Programmes, which encompass confidential enquiries, are designed to help assess the quality of healthcare, and stimulate improvement in safety and effectiveness by systematically enabling clinicians, managers, and policy makers to learn from adverse events and other relevant data. The Maternal, Newborn and Infant Clinical Outcome Review Programme is funded by NHS England, NHS Wales, the Health and Social Care division of the Scottish government, The Northern Ireland Department of Health, and the States of Jersey, Guernsey, and the Isle of Man. Design by: Sarah Chamberlain and Andy Kirk Cover Artist: Tana West Printed By: Oxuniprint This report should be cited as: Knight M, Bunch K, Tuffnell D, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2015-17. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2019. ISBN: 978-0-9956854-8-2 Individual chapters from this report should be cited using the format of the following example for chapter 3: Knight M, Clarke B, Head C, James R, Kotnis R, Lucas S, Shakespeare J, Thorne S, Vause S, Youd E and Tuffnell D on behalf of the MBRRACE-UK cardiac chapter-writing group. Lessons on cardiovascular care. In Knight M, Bunch K, Tuffnell D, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improv- ing Mothers’ Care - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Mater- nal Deaths and Morbidity 2015-17. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2019: p20-44. © 2019 Healthcare Quality Improvement Partnership and National Perinatal Epidemiology Unit, University of Oxford MBRRACE-UK - Saving Lives, Improving Mothers’ Care 2019 Foreword Cardiovascular disease remains the leading cause of women’s deaths during or after pregnancy in the UK and Ireland. There has been no reduction in the maternal mortality rate from heart disease in the UK for more than 15 years. We must all become more aware that heart disease can and does affect young women, and that the additional strain that pregnancy places on the heart can reveal cardiac complications for the first time. Many of the women whose deaths were reviewed had symptoms which, if they had occurred in a non-pregnant person, would be considered highly suspicious of cardiovascular compromise. Yet they were attributed to normal symptoms of pregnancy. For these women, simply being pregnant led to compromised care and delayed diagnosis. New European Society of Cardiology (ESC) guidelines on the management of cardiovascular diseases during preg- nancy were published in 2018, and this report emphasises the importance of a number of the ESC recommendations. In particular, life-saving treatments such as electrical cardioversion should not be denied to women simply because they are pregnant or postpartum. We should above all aim to ensure that women with known cardiovascular condi- tions enter pregnancy fully informed with their health and medications suitably optimised. The ESC guidelines provide clear direction for pre-pregnancy considerations for women with a wide range of known cardiovascular conditions. In particular, we should continue to be mindful of rare cardiovascular disorders which are very high risk in preg- nancy. Women continue to die from pulmonary hypertension during or shortly after pregnancy, either because their pregnancy is unplanned, or because the diagnosis is never considered in a young woman. Advice on counselling, diagnosis and management is detailed in the ESC guidelines. Nevertheless there are areas of cardiovascular care emphasised in this report for which we do not yet have clear guidance. Several women died from ischaemic heart disease after becoming pregnant following assisted reproduc- tion. There is no evidence that their cardiovascular health prior to pregnancy was considered, even though they had a number of clear risk factors for heart disease. We urgently need the evidence to guide cardiovascular assessment and screening prior to assisted conception. Women should be reassured that, although cardiovascular disease is the leading cause of maternal death, the number of women who die during or after pregnancy is still very small. Nevertheless, both women and their health professionals who care for them should be aware of symptoms and signs which are not normal for pregnancy, such as breathlessness when lying flat, chest pain which spreads to the back or arm or fainting during exercise, and which should prompt investigation for cardiovascular disease. By remaining aware of the possibility of heart disease and hence making the diagnosis we will make the first steps to reducing unnecessary deaths amongst young women and leaving families devastated. Barbara Casadei Vera Regitz-Zagrosek Jolien W. Roos-Hesselink President of the European Professor of Cardiovascular Professor of Cardiology at the Society of Cardiology and British Disease in Women at the Charité Erasmus MC in Rotterdam, The Heart Foundation Professor in Universitätsmedizin Berlin Netherlands and co-Chairperson Cardiovascular Medicine and Chairperson 2018 ESC 2018 ESC Guidelines for the Guidelines for the management management of cardiovascular of cardiovascular diseases during diseases during pregnancy pregnancy MBRRACE-UK - Saving Lives, Improving Mothers’ Care 2019 i Key messages from the report 2019 In 2015-17, 209 women died during or up to six weeks after pregnancy, from causes associated with their pregnancy, among 2,280,451 women giving birth in the UK. 9.2 women per 100,000 died during pregnancy or up to six weeks after childbirth or the end of pregnancy. Causes of women’s deaths Heart disease can Women who are older, obese, occur for the first time smoke or have diabetes or in pregnancy – severe a family history may be at chest pain is a red flag greater risk of heart disease Breathlessness when resting and especially Heart when lying flat is not normal in pregnancy 48 women disease 23% and may indicate heart problems Inequalities in Age 34 women <20 years 3% maternal mortality 12 per 100,000 4% 20 - 24 Blood 6 per 100,000 9% 15% clots 16% 25 - 29 9 per Ethnic group 100,000 26% Mixed 28% 2% 23 per 100,000 Mixed 4% 4% Chinese/other Chinese/other9 per 100,000 4% 27 women 4% BlackBlack 30 - 34 7 per Epilepsy 10% 100,000 24% AsianAsian 38 per and stroke 13% 100,000 18% 32% 13 per 100,000 16% 35 - 39 13 per 100,000 25% White White 24 per Other 18% 23 women ≥40 100,000 physical 4% 11% Proportion of women Proportion of women conditions giving birth who died 11% 7 per 80% 100,000 61% Living in more 20 women deprived areas Sepsis 10% Proportion of women Proportion of women giving birth who died 5th quintile 12 per 100,000 (most deprived) 27% 20 women Mental health 37% conditions 10% 4th quintile 23% Women with risk factors 11 per 100,000 28% 17 women 3rd quintile for pre-eclampsia need 19% Bleeding 8% 7 per aspirin to be prescribed 100,000 16% 2nd quintile 17% 8 women 5 per Cancer 4% from 12 weeks of 100,000 10% 1st quintile 5 per 15% 9% 5 women Pre-eclampsia 2% pregnancy (least deprived) 100,000 Proportion of women Proportion of women 7 women Other 3% giving birth who died ii MBRRACE-UK - Saving Lives, Improving Mothers’ Care 2019 Executive Summary Introduction This report, the sixth MBRRACE-UK annual report of the Confidential Enquiry into Maternal Deaths and Morbidity, includes surveillance data on women who died during or up to one year after pregnancy between 2015 and 2017 in the UK. In addition, it also includes Confidential Enquiries into the care of women who died between 2015 and 2017 in the UK and Ireland from cardiovascular causes, hypertensive disorders, early pregnancy conditions and accidents. The report also includes a Morbidity Confidential Enquiry into the care of women with newly diagnosed breast cancer. Surveillance information is included for 549 women who died during or up to one year after the end of pregnancy between 2015 and 2017. The care of 144 women who died and 30 with newly diagnosed breast cancer in pregnancy was reviewed in depth for the Confidential Enquiry chapters. This report can be read as a single document; each chapter is also designed to be read as a standalone report as, although the whole report is relevant to maternity staff, service providers and policy-makers, there are specific clini- cians and service providers for whom only single chapters are pertinent. There are seven different chapters which may be read independently, the topics covered are: 1. Surveillance of maternal deaths 2. Cardiovascular diseases 3. Morbidity from breast cancer 4. Hypertensive disorders 5. Early pregnancy disorders 6. Accidents 7.