RMSO Annual Report including final data for 2001 and provisional data for 2002

R M S OREGIONAL MATERNITY SURVEY OFFICE

Authors: Dr Tricia Cresswell

Dr Allan Colver Dr Alan Fenton Dr Svetlana Glinianaia Dr Sheila MacPhail Dr Judith Rankin Marjorie Renwick Bryan Vernon Dr Martin Ward Platt Dr Chris Wright

Title: RMSO Annual Report 2001, 2002 (provisional) Publisher: RMSO and North East Public Health Observatory Date of publication: December 2003 Editors: Dr Tricia Cresswell

Marjorie Renwick Dr Judith Rankin

ISBN: 1-903945-23-2 Further copies from: RMSO

25 Claremont Place Newcastle upon Tyne NE2 4AA Also available at: www.nepho.org.uk

i

Summary of births, perinatal mortality and infant mortality, Northern Region1 2000-2002 compared to England & Wales 2001-2002

NORTHERN REGION ENGLAND & WALES

2000 2001 20024 2001 20024 BIRTHS2

Total 29,785 29,159 29,394 597,793 599,494Live 29,624 29,006 29,211 594,634 596,122

STILLBIRTHS3 Number 161 153 183 3,159 3,372Rate (per 1,000 total births) 5.4 5.2 6.2 5.3 5.6

PERINATAL DEATHS3 Number 257 227 248 4,757 5,005Rate (per 1,000 total births) 8.6 7.8 8.4 8.0 8.3

EARLY NEONATAL DEATHS3 Number 96 74 65 1,598 1,633Rate (per 1,000 live births) 3.2 2.5 2.2 3.6 3.6

LATE NEONATAL DEATHS3 Number 30 29 23 539 504Rate (per 1,000 live births) 1.0 0.9 0.7 0.9 0.8

POST-NEONATAL DEATHS3 Number 62 51 44 1,103 1,031Rate (per 1,000 live births) 2.1 1.7 1.5 1.9 1.7

INFANT DEATHS3 Number 188 154 132 3,240 3,168Rate (per 1,000 live births) 6.3 5.3 4.5 5.4 5.3

Notes: 1. Northern Region is the geographical area covered by the former Health Authorities:

North Cumbria, Northumberland, Newcastle & North Tyneside, Gateshead & South Tyneside, County Durham & Darlington and Tees.

2. Births data provided by ONS for both the Northern Region and England & Wales.

3. Stillbirths. Perinatal Mortality, Early Neonatal Deaths, Late Neonatal Deaths, Post Neonatal Deaths, and Infant Deaths for the Northern Region provided by the RMSO. Equivalent data for England & Wales provided by ONS.

4. Data for 2002 is provisional.

ii

iii

CONTENTS 1. INTRODUCTION 5

The RMSO............................................................................................................. 5 Boundaries for data collection and reporting............................................................ 6

RMSO outputs..................................................................................................... 8 The annual meetings........................................................................................... 8 This report.......................................................................................................... 8

2. PERINATAL MORTALITY SURVEY 9 Births and Crude Live Birth Rate ............................................................................. 9 Perinatal deaths and mortality rates........................................................................ 9

Unit data ............................................................................................................ 9 Infant mortality ..................................................................................................... 10 Immediate cause of perinatal and infant death ........................................................ 10 Summary of research undertaken with PMS data in the last two years ...................... 10

3. AUTOPSY DATA 17

4. CEMACH 20 CESDI 27/28 Study: Issues for this Region .............................................................. 20 CEMACH Diabetes Enquiry...................................................................................... 20

Panel Chairs........................................................................................................ 21 Panel Assessors .................................................................................................. 21 Commencement Date.......................................................................................... 21

Maternal Deaths Enquiry ........................................................................................ 21 Background ........................................................................................................ 21 Definition of maternal death (Box 1) .................................................................... 22 Structure of the MDE........................................................................................... 22

5. NORTHERN DIABETIC PREGNANCY SURVEY 25 Introduction .......................................................................................................... 25 The Enquiry Panels ................................................................................................ 25

Panel Process...................................................................................................... 26 Panel findings ..................................................................................................... 26

The Summer Workshops – June 2002 and July 2003................................................ 27 Revision of the standards .................................................................................... 27 Notes proforma................................................................................................... 27 Carlisle pilot study............................................................................................... 27

6. OBSTETRIC CARE 29 Induction rates ...................................................................................................... 29 Assisted vaginal delivery ........................................................................................ 29 Breech presentation............................................................................................... 30

7. MATERNAL MORBIDITY SURVEY 35

8. NEONATAL INTENSIVE CARE 36 Intensive care workload ......................................................................................... 36 Nursing dependency .............................................................................................. 37 Neonatal transport................................................................................................. 38

iv

Outcome by birth weight and gestation................................................................... 38 The development of a register of high-risk babies.................................................... 38 The future of the Northern Neonatal Network.......................................................... 39

9. NORTHERN MULTIPLE PREGNANCY REGISTER 42 Numbers, gestation, sex and chorionicity ................................................................ 42 Outcomes.............................................................................................................. 43

Mortality ............................................................................................................. 44 Pregnancies with one intrauterine death and one livebirth ..................................... 44

Congenital anomalies ............................................................................................. 45 Management of labour and delivery ........................................................................ 45 Gestation at delivery .............................................................................................. 46 Admission to SCBU ................................................................................................ 46 Publications and presentations based on the MPR data ............................................ 46

10. NORTHERN CONGENITAL ABNORMALITY SURVEY 48 Background ........................................................................................................... 48 Neural tube defects................................................................................................ 48 Trends in termination for congenital anomaly .......................................................... 50 Gastroschisis and exomphalos ................................................................................ 51 New Developments ................................................................................................ 51 Consent ................................................................................................................ 52 Research............................................................................................................... 52

Ongoing research................................................................................................ 54 Publications and presentations based on the NorCAS data........................................ 55

Publications ........................................................................................................ 55 Presentations...................................................................................................... 55

11. COLLABORATIVE CEREBRAL PALSY SURVEY (NECCPS) 57 Publications involving NECCPS data in last two years ............................................... 60

12. REPORT FROM RMSO ADVISORY GROUP 61

APPENDIX (I) RMSO STAFF AND CONTACT DETAILS 62 RMSO Staff and contact details:.............................................................................. 62

APPENDIX (II) RMSO ADVISORY GROUP MEMBERSHIP 63 RMSO Advisory Group membership (current)........................................................... 63

APPENDIX (III) MEMBERSHIP OF STEERING GROUPS 64 Perinatal Mortality Survery (PMS/CEMACH) (current) .............................................. 64 Northern Congenital Abnormality Survey (NorCAS) (current) ................................... 64 Multiple Birth Steering Group (current)................................................................... 64 Diabetic Steering Group (current) .......................................................................... 65 NECCPS Steering group.......................................................................................... 65

APPENDIX (IV) STANDARDS OF CARE FOR WOMEN WITH PRE PREGNANCY DIABETES AND THEIR BABIES 66

Process Of Care ..................................................................................................... 66 Pre-Pregnancy ....................................................................................................... 66 Pregnancy Care ..................................................................................................... 66 Intrapartum Care................................................................................................... 67 Discharge Arrangements ........................................................................................ 67 Care Of Babies ...................................................................................................... 67

5

1. INTRODUCTION The RMSO The Northern Regional Perinatal Mortality Survey was formally established in 1981 as a collaborative exercise between all the health districts in the former Northern Region, with the aim of studying perinatal mortality and its causes. In 1985, the Fetal Abnormality Survey (now the Northern Congenital Abnormality Survey-NorCAS) was established with the remit of obtaining data on congenital abnormality in the Northern Region. From 1993, the Regional Maternity Survey Office (RMSO) delivered the regional coordination function for the national Confidential Enquiry into Stillbirths and Deaths in Infancy (CESDI), including both data collection and running confidential enquiry panels. From April 2003, the RMSO has hosted the Regional Manager for the new Confidential Enquiry into Maternal and Child Health (CEMACH) which replaces CESDI. In recognition of the importance of studying morbidity, the RMSO has also hosted a Multiple Pregnancy Register and a Maternal Morbidity Register since 1998. The Regional Diabetic Pregnancy Audit (established in 1994) was incorporated into the RMSO during 1999. The Diabetic Pregnancy Audit is based on maternal history so each mother's diabetic history can be linked to pregnancy outcome in terms of perinatal and infant mortality, fetal abnormality and multiple births. This makes this particular data set unique. In addition the RMSO has hosted the North of England Collaborative Cerebral Palsy Survey (NECCPS) since 1995 (Figure 1). From April 2002, the RMSO has also coordinated data collection for the Confidential Enquiry into Maternal Deaths which is now also incorporated into CEMACH. From January 2003, the RMSO has been the reporting route for the National Congenital Anomaly System (NCAS). Figure 1: The Surveys and Registers

6

Boundaries for data collection and reporting This is the first report produced jointly between the Regional Maternity Survey Office (RMSO) and the North East Public Health Observatory (NEPHO). Major changes occurred to NHS organisations in 2002, with the formation of Primary Care Trusts (PCTs) and Strategic Health Authorities (map 1) and the abolition of Health Authorities and the NHS regional offices. The RMSO has always reported data to geographical boundaries. However PCT populations are defined as those registered with a General Practitioner in the PCT plus any unregistered population. ONS data for 2001 and 2002 is geographical. Map 1: Strategic Health Authorities and PCTs covered by the RMSO

In this report, data are presented mostly by Local Authority (Map 2). Local Authority has been chosen as this provides a degree of match with PCT populations and a number of relevant national targets are now defined at Local Authority level. The most relevant to the RMSO is the infant mortality target.1

1 Infant mortality target: Starting with children under one year, by 2010 to reduce by at least 10% the gap in mortality between manual groups and the population as a whole.

������������� �� ����� ����������� �� ��� ���� ������������ ����������������� ����������������������� ��������������� ���� �� �� ����

������� ������������� � ��� !��" �����������

� ������ ��������!� ��� ���������� �������� �����������!� ��� ������ ������ ��������

�����!�������� � ��� !��#

���������������������� ��#

�������� �����$�!� �" ����#%�� �� ����

7

Map 2: Unitary and district authorities covered by the RMSO

Consent and confidentiality As a member of the British Isles Network of Congenital Anomaly Registers (BINOCAR), the Northern Congenital Abnormality Survey (NorCAS) obtained Section 60 Approval (Health and Social Care Act, 2001) to process data. Patient consent is obtained for data collection for the Diabetic Pregnancy Survey. A new RMSO Advisory Group has been established to address issues of consent and confidentiality in relation to the other surveys. The RMSO Advisory Group reports on its work to date in Chapter 12 (see Appendix (ii) for membership). Data is processed at the RMSO within the parameters of the Security and Confidentiality Policy. Access to data is tightly controlled. Access to data – clinical governance Senior clinical staff have access on request (and subject to usual data security requirements) to named patient data from their own units for audit and quality control purposes. Directors of Public Health have access to data on their Primary Care Trust/Strategic Health Authority populations on specific request to address issues of concern. Access to data – research Applications to access data for research purposes are made using the RMSO documentation and must comply with RMSO guidance. Requests for access to named data will require Local or Multi Research Ethics Committee approval for the project. Advice is available from the Director or the Clinical Director of the RMSO. The RMSO has always enthusiastically supported research using data from the surveys and registers. A list of recent publications is included in relevant chapters.

�������������������� ������������������������������������������������������������������������������������������ ������������������������������������ ���!� ����"�������������!�� ��#�������� ��������#������������������$������ �������������������������� ������������������������%���!�%����������

8

RMSO funding update The RMSO faced a major funding shortfall at the end of 2002 due to the decision of the new Confidential Enquiry into Maternal and Child Health (CEMACH) to reduce funding from £100,000 per annum to £40,000. Fortunately a significant grant was obtained from the Department of Health (Disease Register call) for the Northern Congenital Abnormality Survey, and some short term funding from the Regional Public Health Group, but there remains a funding gap which will become more severe in 2004/2005. Other funding is being actively pursued. RMSO outputs The surveys and registers are utilised for: • Local and regional audit in support of clinical governance in obstetrics, paediatrics and

midwifery services across the region;

• As a platform for research into causes of deaths, anomalies and disability and into service quality;

• As the regional component of national (and from 2004, international) surveillance programmes.

In addition two new NHS objectives and performance targets require this data: • Infant Mortality Inequalities target

• Monitoring and evaluation of antenatal screening programmes The RMSO also provides the regional management function for CEMACH. The annual meetings There are annual meetings for four of the registers/surveys: PMS, NorCAS, NECCPS and the Diabetic Pregnancy Audit. These meetings are used to present work which has utilized the data and to debate controversial and topical issues. Issues from the meetings are highlighted in some of the chapters. This report The annual report is used to present data, demonstrate the utility of the data in terms of research and audit and highlight areas for further work.

9

2. PERINATAL MORTALITY SURVEY (PMS)

Summary regional data for 2000, 2001 and provisional data for 2002 are presented on page i. Births and Crude Live Birth Rate The 1990s saw a fall in both the numbers of births and the crude live birth rate, in this region as elsewhere, and this continued until 2001. However, the total births for 2002 (29,394) were slightly higher than for 2001 (29.159). The total number of registered births in the region for 2002 is only 71% of the 1990 figure (40,841). This is partly due to the loss of South Cumbria from the region in 1994, but there is an underlying trend which does not simply reflect a fall in population since the crude live birth rate (live births per 1,000 resident population) has also fallen over this period from 13.2 in 1990, to 10.7 in 1999 and 10.2 in 2002. Perinatal deaths and mortality rates Table 1 gives the numbers of registered births (ONS data), perinatal deaths (RMSO data) and perinatal mortality rates in each Local Authority (district and unitary) for the last three years. Some districts show considerable year-to-year variation in perinatal mortality, which to a large extent reflects the relatively small numbers of deaths involved. In an attempt to overcome this cumulative perinatal mortality rates for the three year periods 1997-1999 and 2000 – 2002 are provided. At least some of the variation in perinatal mortality between districts and over time may lie in the numbers of infants with gestations less than 24 weeks judged to have died in the neonatal period (and therefore contributing to perinatal mortality) rather than in utero (classified as a spontaneous abortion). For this reason the WHO and others have recommended that infants less than 500g should be excluded from perinatal mortality statistics. Table 2 shows the numbers of perinatal deaths of infants weighing at least 500g; those weighing at least 1kg; those weighing at least 1kg who were also normally-formed; and appropriate perinatal mortality rates for 2001 and 2002 and cumulatively for 2000 - 2002. Excluding very low birthweight babies largely removes the contribution of extreme prematurity to perinatal mortality and allows an assessment of the residual mortality for larger infants. Unit data Table 3 gives timing of death and perinatal mortality rate by hospital maternity unit of delivery. In general terms district to district comparisons reflect socioeconomic and other population factors and, to a lesser extent, the health care factors (access and quality) resulting in the measured outcome which here is mortality. While unit to unit comparison may allow a closer focus on health care factors, it continues to reflect the underlying population factors. As already noted, it is inadvisable to come to firm conclusions using annual perinatal mortality rates based on relatively small numbers of births. Also, larger units acting as tertiary referral centres would be expected to have more deaths. For these reasons table 3 requires cautious interpretation. As in previous years, an ‘adjusted’

10

perinatal mortality rate has been calculated, which excludes pregnancies either unbooked or originally booked elsewhere. Infant mortality The total numbers of late abortions (20-23 weeks gestation), stillbirths, neonatal and post-neonatal deaths for each local authority during 2001 and 2002 are presented in Table 4, together with the calculated infant mortality rate (deaths in the first year of life per 1,000 live births). Numbers of deaths are small and year on year variation at individual local authority area level is likely to be due to chance. Immediate cause of perinatal and infant death Table 5 gives cause of death using the Extended Wigglesworth classification and perinatal and infant mortality rates. The major contributor to perinatal mortality remains “antepartum death”, in the main unexplained antepartum stillbirth which has been extensively investigated through the Confidential Enquiry into Stillbirths and Deaths in Infancy (CESDI). Both congenital malformation and immaturity also contribute as significant causes. The most important cause of infant mortality is malformation followed by infection and immaturity. The contribution of SIDS (Sudden Infant Death Syndrome) has reduced from a rate of 1.8 per 1,000 live births in 1989-1991 to 0.7 per 1,000 live births in 2000-2002. Summary of research undertaken with PMS data in the last two years Perinatal mortality in the Northern Region, 1982-2000: the contribution of changing maternal risk factors. Perinatal mortality in England and Wales has declined over the past 20 years, the rate has reached a plateau at a level higher than that in many other European countries. Perinatal mortality is known to be higher among teenage mothers, older mothers (>35 years), first births and multiple births. We hypothesise that the changing demographic profile of mothers has contributed to maintaining the static perinatal mortality rate in the Northern Region. This retrospective cohort study quantified the contribution of these factors (maternal age, parity and multiplicity) to the extended perinatal mortality rate in the Northern Region, using data the Northern Perinatal Mortality Survey. Publications: • BELL R, GLINIANAIA SV, RANKIN J, WRIGHT C, PEARCE MS, PARKER L. Changing

patterns of perinatal death, 1982-2000; a retrospective cohort study. Archives of Disease in Childhood. 2004 (in press).

• GLINIANAIA SV, RANKIN J, BELL R, PEARCE MS, PARKER L. Contribution of changing risk factors to trends in perinatal mortality: population based retrospective cohort study. Epidemiology (submitted).

• RANKIN J, PEARCE MS, BELL R, GLINIANAIA SV, PARKER L. Perinatal mortality rates: adjusting for risk factor profile is essential. Paediatric and Perinatal Epidemiology (submitted).

11

The epidemiology of stillbirth 1982-2000 Around 5 per 1,000 births result in stillbirth. Although stillbirth rates in most industrialised countries have declined over the past 20 years, the rate appears to have reached a plateau in England and Wales. In particular, concerns have been raised in relation to the lack of improvement in the rate of antepartum stillbirth, a large proportion of which are not attributed to any specific cause of death. The reasons for the recent lack of substantive decline in stillbirth rates are unknown. This research aims to investigate trends in stillbirth it major causes over the past 19 years, and to investigate the contribution of maternal and other risk factors. The study is on-going with anticipated completion March 2005. Publication: • BELL R, PARKER L, MACPHAIL S, WRIGHT C. Changes in the cause of late fetal death,

1982-2000. (submitted).

12

Table 1: Northern Region: Perinatal Deaths and Perinatal Mortality Rates for 2000, 2001 & 2002 by Local Authority and Aggregate Perinatal Mortality Rates 1997-1999 and 2000-2002

Registered Total Births (ONS)

Number of Perinatal Deaths (PMS)

PERINATAL MORTALITY RATE

AGGREGATE PERINATAL

MORTALITY RATE

Local Authority

2000 2001 2002 2000 2001 2002 2000 2001 2002 1997/99 2000/02 Hartlepool 1,069 1,034 1,016 12 4 10 11.2 3.8 9.8 8.8 8.3 Stockton on Tees 1,970 1,956 2,021 13 20 12 6.5 10.2 5.9 8.7 7.6 Middlesbrough 1,790 1,676 1,707 12 20 17 6.7 11.9 9.9 9.7 9.5 Redcar & Cleveland 1,374 1,439 1,365 13 11 9 9.5 7.6 6.6 6.4 7.9

Darlington 1,065 1,083 1,143 15 9 8 14.0 8.3 7.0 11.2 9.7 Wear Valley 645 626 654 4 4 12 6.2 6.4 18.3 4.3 10.4 Derwentside 918 872 842 8 1 3 8.7 1.1 3.6 5.7 4.6 Durham 786 716 804 9 6 7 11.4 8.4 8.7 9.4 9.5 Chester le Street 600 527 552 8 4 1 13.3 7.6 1.8 5.3 7.7 Easington 934 936 994 9 5 8 9.6 5.3 8.0 6.4 7.7 Sedgefield 917 926 899 11 10 9 9.8 10.8 10.0 2.9 10.9 Teesdale 217 183 185 1 1 0 51.0 5.5 0.0 5.8 3.4

Sunderland 2,974 2,869 2,947 25 23 25 8.4 8.0 8.5 8.8 8.3

South Tyneside 1,528 1,489 1,474 10 19 12 6.5 12.8 7.5 7.4 9.1 Gateshead 2,081 2,010 2,023 23 17 14 11.0 8.4 6.9 8.6 8.8

North Tyneside 2,061 1,955 2,053 15 10 17 7.3 5.1 8.3 8.2 6.9 Newcastle 2,904 2,888 2,963 25 22 32 8.6 7.6 10.8 7.8 9.0

Northumberland 2,806 2,870 2,781 18 23 27 6.4 8.0 9.7 8.2 8.0

Allerdale 880 910 847 6 5 6 6.8 5.5 7.1 11.7 6.4 Carlisle 1,083 925 1,044 7 5 9 6.5 5.4 8.6 11.1 6.9 Copeland 706 666 663 5 3 9 7.1 4.5 12.7 7.9 8.4 Eden 477 474 414 8 5 2 16.8 10.5 4.8 5.9 11.0

TOTALS 29,785 29,059 29,391 257 227 249 8.6 7.8 8.4 7.9 8.3

13

Table 2: Northern Region 2001 & 2002: Perinatal Mortality by Local Authority excluding infants weighing less than 500g or less than 1kg. Perinatal mortality rates for infants weighing 1 kg or more, both with and without major malformation for 2001 & 2002

Deaths known to RMSO PERINATAL MORALITY RATE PERINATAL MORTALITY RATE All

perinatal Deaths

>499g only

>999g only

NormallyFormed >999g

All > 999g

Normally-formed > 999g

Local Authority

01 02 01 02 01 02 01 02 2001 2002 2000-02 2001 2002 2000-02 Hartlepool 4 10 4 10 3 9 3 8 2.9 8.9 6.4 2.9 7.9 5.5 Stockton on Tees 20 12 18 10 12 5 10 3 6.1 2.5 4.1 5.1 1.5 3.2 Middlesbrough 20 17 20 15 10 10 7 4 6.0 5.9 5.1 4.2 2.3 2.7 Redcar & Cleveland 11 9 11 8 7 5 7 5 4.9 3.7 5.5 4.9 3.7 4.8

Darlington 9 8 7 7 6 5 6 5 5.5 4.4 5.8 5.5 4.4 5.2 Wear Valley 4 12 4 12 3 10 3 7 4.8 15.3 7.2 4.8 10.7 5.2 Derwentside 1 3 1 1 0 1 0 0 0.0 1.2 2.9 0.0 0.0 2.2 Durham 6 7 4 5 4 3 3 3 5.6 3.7 6.5 4.2 3.7 5.6 Chester le Street 4 1 4 1 4 1 4 1 7.6 1.8 5.9 7.6 1.8 4.8 Easington 5 8 5 8 0 6 0 6 0.0 6.0 4.1 0.0 6.0 3.1 Sedgefield 10 9 9 9 5 6 3 5 5.4 6.7 5.9 3.2 5.6 4.8 Teesdale 1 0 1 0 1 0 1 0 0.0 0.0 1.8 5.5 0.0 1.8

Sunderland 23 25 22 23 14 18 11 14 4.9 6.1 5.6 3.8 4.8 4.4

South Tyneside 19 11 17 9 10 8 7 7 6.7 5.4 5.3 4.7 4.7 4.2 Gateshead 17 14 17 13 14 10 11 7 7.0 4.9 5.9 5.5 3.5 4.4

North Tyneside 10 17 9 15 6 12 4 10 3.1 5.8 4.7 2.0 4.9 3.9 Newcastle 22 32 20 29 14 20 10 19 4.8 6.7 5.8 3.5 6.4 4.9

Northumberland 23 27 22 22 15 13 14 12 5.8 5.1 4.8 5.6 4.5 4.4

Allerdale 5 6 3 5 2 2 2 2 2.2 2.4 3.8 2.2 2.4 3.0 Carlisle 5 9 5 8 5 5 5 5 5.4 4.8 5.2 5.4 4.8 4.9 Copeland 3 9 3 9 3 7 2 6 4.5 10.6 5.0 3.0 9.0 4.9 Eden 5 2 5 2 5 1 3 1 10.5 2.4 8.5 6.3 2.4 6.4

TOTALS 227 248 210 221 143 156 116 129 4.9 5.2 5.3 4.0 4.3 4.3

14

Table 3: Northern Region 2001 & 2002: Timing of death and perinatal mortality rate (PNMR) by unit Maternity Units Registered

Births Stillbirths ENND LNND Non-Adjusted

PNMR Adjusted

PNMR Adjusted

PNMR 2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 2000-2002 Hartlepool 1,552 1,596 6 11 2 1 1 0 5.1 7.5 5.1 7.5 6.7 North Tees 1,898 2,002 10 10 (1) 8 (1) 2 3(1) 2(1) 9.5 6.0 8.9 5.5 11.2 South Tees 3,470 3,394 21 (2) 20 16(3) 9(4) 7(2) 5(1) 10.7 8.3 9.2 7.2 8.1

Carlisle 1,464 1,500 8 (1) 10 1 0 0 0 6.1 7.7 5.5 6.7 6.2 Whitehaven 1,205 1,183 3 8 2 0 0 0 4.1 6.8 4.1 6.8 6.3 Penrith 149 153 0 0 0 0 0 0 0.0 0.0 0.0 0.0 0.0

Darlington 1,207 1,338 5 4 4 2 0 0 7.4 4.5 7.4 4.5 7.3 Bishop Auckland 1,405 1,350 8 12 (1) 0 3 2 0 5.7 11.1 5.7 10.3 7.6 Durham 1,984 2,128 5 5 3 1 3 0 4.0 2.8 4.0 2.8 5.0

Sunderland 3,003 3,045 15 (1) 16 10(2) 9 (4) 1 7(1) 8.3 8.2 7.3 6.9 7.3

South Tyneside 1,390 1,395 13 7 (2) 2 2 2 0 10.8 6.4 10.8 5.0 6.6 Gateshead 1,641 1,571 8 (1) 11 4 4 0 0 7.3 9.5 6.7 9.5 8.3

North Tyneside 1,665 1,650 4 8 1 5 0 1 3.0 7.9 3.0 7.9 4.8 Newcastle 4,688 4,772 29 (7) 48(12) 18(10) 20(12) 7(3) 7(3) 10.0 14.2 6.4 9.2 7.7

Ashington 1,617 1,710 10 (1) 7 (1) 2 3 1 0 7.4 5.8 6.8 5.3 5.9 Berwick 49 52 1 0 0 0 0 0 20.4 0.0 20.4 0.0 6.8 Alnwick 88 79 0 0 0 0 0 0 0.0 0.0 0.0 0.0 0.0 Hexham 658 662 2 (1) 2 0 1(1) 1 0 3.0 4.5 1.5 3.0 2.0

Totals 29,133 29,580 153 182 74 65 29 23 7.8 8.3 6.7 7.0 6.0 NOTES: 1. Registered birth data are provided by individual units (South Tees figures include Guisborough). Totals are not identical to those in other tables as they include a few

“non resident” births. 2. The table gives the total numbers of stillbirths and neonatal deaths of babies delivered at the named unit regardless of the place of booking. Non adjusted perinatal

mortality rates are calculated using these figures. 3. The figures in brackets are those babies either originally booked elsewhere but delivered in the unit (i.e. transferred either antenatally or intrapartum) or unbooked.

The adjusted perinatal mortality rate is the rate for those babies booked and delivered at a given unit. 4. Direct comparisons cannot be made between units because of the small number of deaths in any given unit.

15

Table 4: Northern Region: Timing of death by Local Authority 2001 & 2002. Infant Mortality rate by Local Authority 2001, 2002 and 2000-02 Local Authority Registered Live

Births (ONS) Late

Abortions1 Stillbirths

ENND (0-6d)

LNND (7-27d)

PNND (28-365d)2

INFANT MORTALITY RATE

2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 00/02 Hartlepool 1,034 1,016 7 3 3 7 1 3 1 0 3 2 4.8 4/9 5.4 Stockton on Tees 1,956 2,021 3 8 14 7 6 5 2 1 5 1 6.6 3.5 6.2 Middlesbrough 1,676 1,707 5 6 10 11 10 6 3 1 1 8 8.4 8.8 7.4 Redcar & Cleveland 1,439 1,365 3 4 7 9 4 0 2 3 0 1 4.2 2.9 4.3

Darlington 1,083 1,143 0 4 5 6 4 2 0 0 4 1 7.4 2.6 4.9 Wear Valley 626 654 3 1 3 7 1 5 0 0 4 1 8.0 9.2 8.8 Derwentside 872 842 4 2 0 2 1 1 1 0 3 0 5.7 1.2 4.1 Durham 716 804 4 3 1 3 5 4 1 1 2 1 11.2 7.5 7.9 Chester le Street 527 552 4 2 4 1 0 0 1 0 2 1 5.7 1.8 6.4 Easington 936 994 3 4 3 7 2 1 0 1 3 2 5.3 4.0 5.2 Sedgefield 926 899 4 0 6 7 4 2 2 0 1 3 7.6 5.6 7.7 Teesdale 183 185 1 1 0 0 1 0 0 0 0 0 10.9 0.0 3.6

Sunderland 2,869 2,947 21 19 15 19 8 6 2 8 3 2 4.5 5.4 5.8

South Tyneside 1,489 1,474 5 9 13 8 6 3 3 1 2 2 7.4 4.1 6.0 Gateshead 2,010 2,023 8 6 14 11 3 3 0 2 3 1 3.0 3.0 3.9

North Tyneside 1,955 2,053 4 11 7 13 3 4 0 0 7 6 5.1 4.9 5.3 Newcastle 2,888 2,963 17 13 14 24 8 8 4 3 1 4 4.5 5.1 5.4

Northumberland 2,870 2,781 13 7 20 19 3 8 3 2 4 4 3.2 4.0 4.4

Allerdale 910 847 7 1 4 6 1 0 1 0 0 0 2.2 0.0 1.5 Carlisle 925 1,044 5 3 5 8 0 1 0 0 2 4 2.2 4.8 2.6 Copeland 666 663 2 3 2 6 1 3 2 0 1 0 6.0 4.5 6.8 Eden 474 414 1 2 3 2 2 0 0 0 0 0 4.2 0.0 3.5

TOTALS 29,159 29,394 124 112 153 183 74 65 29 23 51 44 5.3 4.5 5.3 NOTES: 1. Late abortions include terminations of pregnancy at 20-23 weeks and late fetal loss. 2. Post-neonatal deaths are those occurring during 2000 and 2001 (other deaths are of infants delivered in 2001 and 2002).

16

Table 5: Northern Region: Immediate cause of Perinatal and Infant Death, infant and perinatal mortality rates 2000-2002

PERINATAL MORTALITY RATE (deaths per 1,000 total births)

INFANT MORTALITY RATE (deaths per 1,000 live births)

AGGREGATE INFANT MORTALITY RATE

CAUSE OF DEATH

1997-1999 2000-2002 2000 2001 2002 2000-2002 Malformation 1.2 1.5 1.8 1.5 1.4 1.6 Antepartum death 5.6 3.7 0.0 0.0 0.0 0.0 Intrapartum anoxia/trauma 0.9 0.8 0.4 0.4 0.4 0.4 Immaturity 1.2 1.0 1.4 1.4 1.0 1.3 Infection (including NEC1) 0.4 0.6 1.2 0.9 1.1 1.0 SIDS2 0.0 0.1 1.0 0.7 0.3 0.7 Accident-non IP trauma 0.0 0.0 1.0 0.03 0.0 0.1 Other specific causes 0.6 0.6 0.4 0.3 0.3 0.4 Unclassifiable/unexplained 0.1 0.0 0.0 0.0 0.0 0.0 All Causes 8.5 8.3 6.2 5.2 4.5 5.4

NOTES: 1. NEC – necrotising enterocolitis. 2. SIDS – Sudden Infant Death Syndrome.

17

3. AUTOPSY DATA

Post mortem rates for the region and for individual units are presented in Table 1, which includes data for 1999-2001 to allow comparison. The numbers and rates are calculated from the numbers of deaths within a unit. There has clearly been a worrying decline in autopsy rates within the region over the past three years: the perinatal autopsy rate was 55% in 1999 and 45% in 2002. This is presumably related to the recent controversies over organ retention, reflecting not only reluctance of families to give consent but also perhaps increasing reluctance of health care professionals to ask. Breaking cases down by type (Table 2) shows that within the stillbirth group there was a particularly steep fall in the intrapartum autopsy rate from 47% (2001) to 16% (2002). There has also been worrying drop in the neonatal autopsy rate, which has been running at 40-40% for the last ten years but was only 27% in 2001. Table 2: Autopsy rates (%) by timing of death, 2001 and 2002 Antepartum

stillbirth Intrapartum stillbirth

All stillbirth

Early NND

Late NND

All NND

PNND

2001 58 47 57 41 48 43 582002 54 16 50 23 37 27 43

The RMSO is provided with information about the reasons why no autopsy was undertaken and while this suggests that declining rates were predominantly due to families being less likely to give consent this to some extent reflects the motivation of the individual seeking the consent. There was also an increase in these two years in the number of cases where no request was made to the family (14 to 26). Analysis of all deaths stratifying by maternal age shows falls in autopsy rates from 2001 to 2002 with all maternal ages (<30 years: 46% to 41%; 30 years or more: 46% to 43%).

18

19

Table 1: Autopsy rates 2000 and 2001

ALL DEATHS PERINATAL DEATHS Number of

Deaths Number of

Post Mortems

Post Mortem Rate %

Number of Deaths

Number of Post

Mortems

Post Mortem Rate %

UNIT

2001 2002 2001 2002 1999 2000 2001 2002 2001 2002 2001 2002 1999 2000 2001 2002 Hartlepool 23 21 12 14 63 48 52 67 8 12 4 8 73 42 50 67 North Tees 30 27 12 8 61 33 40 30 18 12 8 3 58 14 44 25 South Cleveland 55 52 22 22 60 49 40 42 37 29 14 11 61 54 37 38 Carlisle 20 19 9 4 52 40 42 21 9 10 6 3 53 45 62 30 West Cumberland

11 10 4 8 55 53 36 80 5 8 1 6 50 70 20 75

Darlington 12 10 10 6 50 36 83 60 9 6 8 3 29 36 89 50 Durham 26 14 14 11 79 38 54 79 8 6 4 5 77 41 50 83 Bishop Auckland 23 21 15 6 55 72 65 29 8 15 5 2 67 73 62 13 Ashington 23 16 14 6 48 53 64 37 13 10 7 3 27 36 58 30 Hexham 4 5 2 1 100 67 50 20 2 3 0 0 100 100 0 0 Gateshead 21 24 11 11 54 53 52 46 12 15 4 6 36 69 33 40 RVI Newcastle 87 107 53 56 69 62 61 52 47 68 28 34 62 63 60 50 North Tyneside 15 24 10 12 57 36 67 50 5 13 3 6 40 33 80 46 South Tyneside 23 18 13 13 60 68 56 72 15 9 10 5 40 71 67 56 Sunderland 49 49 30 26 53 69 61 53 25 25 11 14 57 62 44 56 Home 6 2 3 1 40 70 50 50 4 1 3 0 67 57 75 0 Out Region 3 2 0 0 33 33 0 0 2 1 0 0 0 33 0 0 TOTALS 431 423 234 205 60 54 54 49 227 244 116 109 55 53 51 45

20

4. CONFIDENTIAL ENQUIRY INTO MATERNAL AND CHILD HEALTH (CEMACH) In April 2003, the Confidential Enquiry into Stillbirths and Deaths in Infancy (CESDI) was merged with the Confidential Enquiry into Maternal Deaths under the umbrella of the new Confidential Enquiry into Maternal and Child Health (CEMACH). This chapter provides updates on: • The key findings of the CESDI 27/28 study;

• The CEMACH diabetes enquiry;

• The reporting arrangements of the Maternal Deaths Enquiry (MDE) component of CESDI.

CESDI 27/28 Study: Issues for this Region Our region contributed 35 cases to the confidential enquiry process for Project 27/28 comprising 19 deaths and 16 cases which acted as controls. The cases studied from this region were more likely to be co-habiting than married. The incidence of major bleeding in pregnancy was higher and the incidence of spontaneous preterm labour was lower. The overall transfer rate in the region was higher than nationally probably reflecting the provision of neonatal care by the consortium. Overall our outcomes were largely in-keeping with the national findings but the quality of surveillance and interpretation in labour needs to be improved. However, we had a low incidence of upper segment caesarean delivery but many more of our sections were classed as immediate emergencies. Overall 43% of our cases were coded as having sub-standard obstetric care. The neonatal teams achieved a high standard of thermal warming in our region and overall the treatment with Surfactant was good. Neonatal care was considered to sub-standard in 46% of our cases and the national study demonstrated that sub-standard care was not only noted more often in babies who died but also substantially increased the risk of death in babied who were born in good condition. The 27/28 week report lists the detailed recommendations which should be reviewed and implemented by all maternity units in the region. CEMACH Diabetes Enquiry The diabetes programme was initiated by CESDI (now CEMACH) in 2002 with the aim of identifying all pregnant women with Type 1 and Type 2 diabetes in England, Wales, Northern Ireland and the Channel Islands. Women were notified to the CEMACH regional office and a standards data set completed and forwarded at 28 days post delivery (whatever the outcome). The enquiry phase is to take a case control approach together with an audit of the standards of care given to a subset of woman within the cohort. Cases will include all women who had an outcome of late fetal loss from 20 weeks gestation, stillbirth or neonatal death within the first 28 days following delivery, plus all confirmed

21

congenital malformations delivered from 20 weeks gestation. A random sample of controls will be identified for enquiry, sampling from all women whose babies are delivered after 36 completed weeks and who are still alive at 28 days. The enquiries will be carried out by a multi-disciplinary group of clinicians, mainly with a special interest in diabetes, who are provided with a complete set of fully anonymised maternity notes (to 7 days post natal) and neonatal case notes (to 3 days post delivery), plus a proforma completed by the diabetes department regarding the care given up to 1 year pre-conceptionally. The remit of the panel is to identify whether poor standards of care are associated with poor outcome and also to audit the standards of care given overall. It is therefore essential that the notes are forwarded in the manner requested with particular attention to the quality and completeness of information photocopied. Panel Chairs Dr Chris Wright, Consultant Perinatal Pathologist, and Mr Dave Evans, Consultant Obstetrician, have been appointed as Panel Chairs for this region. Panel Assessors All Consultant Obstetricians with a special interest in Diabetes, Consultant Diabetologists, Diabetes Specialist Nurses and Midwives were circulated with the guidelines and application form to complete in order to participate in the enquiry panel procedure. Commencement Date Randomisation of notes for enquiry (first year cases) will be undertaken in November 2003 and requests for notes from Trusts will start in December. It is anticipated that each region will hold 9 meetings per year (2 year project) and the first meeting should be in March 2004. Maternal Deaths Enquiry Background The maternal deaths enquiry (MDE) now forms part of the work programme of CEMACH. It is a Department of Health requirement that all maternal deaths should be subject to this confidential enquiry and all health professionals have a duty to provide the information required. In participating in the confidential enquiry, the professionals concerned are asked: • To provide a full and accurate account of the circumstances leading up to the woman’s

death, with supporting records;

• To reflect on any clinical or other lessons that have been learned, either personally or as part of the wider institution, and what actions are required.

The aim of the MDE within CEMACH is, as a component of clinical governance, to help ensure that all pregnant and recently delivered women receive the best possible care delivered in appropriate settings and taking account of individual needs.

22

Definition of maternal death (Box 1) A maternal death is defined as any death that occurs during or within one year of pregnancy, childbirth or abortion. Box 1: Definitions of maternal deaths2 Maternal deathsa: Deaths of women while pregnant or within 42 days of delivery, miscarriage or termination of pregnancy, from any cause related to or aggravated by the pregnancy or its management, but not from accidental or incidental causes. Directa: Deaths resulting from obstetric complications of the pregnant state (pregnancy, labour and puerperium), from interventions, omissions, incorrect treatment or from a chain of events resulting from any of the above. Indirecta: Deaths resulting from previous existing disease or disease that developed during pregnancy and which was not due to direct obstetric causes, but which was aggravated by the physiologic effects of pregnancy. Lateb: Deaths occurring between 42 days and one year after termination of pregnancy, miscarriage or delivery that are due to Direct or Indirect maternal causes. Coincidental (Fortuitous)c: Deaths from unrelated causes which happen to occur in pregnancy or the puerperium. a ICD-9 b ICD-10 c ICD-9 classifies these deaths as Fortuitous but the MDE prefers to use the term Coincidental as it is a more accurate description.

Structure of the MDE The process is summarised in Figures 1 and 2: • Notification of maternal deaths are usually made directly by one or more of the health

professionals concerned to the CEMACH Regional Manager of the Region where the woman was usually resident. The Regional Manager notifies CEMACH Central Office and an enquiry form MDR (UK)1 is then issued to the Regional Manager.

• Cases are also reported by coroners, LSA (Local Supervising Authority) Midwives and ascertained from ONS certificates by record linkage of births and deaths. If the case is identified from ONS death certificate data, the CEMACH Central Office notifies the Regional Manager to initiate the enquiry.

• The enquiry form is sent by the Regional Manager to obstetricians, anaesthetists, pathologists, general practitioners, midwives and any other professionals who were concerned with the care of the woman.

2 1997–1999 Why Mothers Die. The fifth report of the Confidential Enquiries into Maternal Deaths in the United Kingdom, 2001

23

• Once all available information about the death has been collected and collated by the Regional Manager, all records are anonymised and circulated to the Regional Assessors (Figure 2).

• The Obstetric and Midwifery Assessors see all cases. Anaesthetic Assessors review all cases where there had been involvement of an anaesthetist or intensive care.

• Every possible attempt is made to obtain full details of any autopsy or pathological investigations, which are then reviewed by the Pathology Assessor.

• The Assessors add their comments and opinions regarding the cause or causes of death. The completed form is returned to the Regional Manager.

• The Central Assessors in obstetrics and gynaecology, midwifery, anaesthetics, pathology, psychiatry and general medicine then review, as required, all available recorded facts about each case and assess the many factors that may have led to death.

Figure 1: Notification of maternal death and completion of enquiry form

Maternal Death notified to CEMACH Regional Manager• Regional hospital• CEMACH Central Office (ONS)• LSA Midwife• Other

CEMACH Central Office

Notification Form

CEMACH Regional Manager

Notification Form

CEMACH Regional Manager

Unit of delivery and/or deathGeneral Practitioner

Lead Obstetrician

Head of Midwifery

Director of Anaesthetics

Director of Pathology

Others as necessary:• Physicians/surgeons• A&E• Ambulance services• Psychiatric services• Coroner’s office

Maternal Death notified to CEMACH Regional Manager• Regional hospital• CEMACH Central Office (ONS)• LSA Midwife• Other

CEMACH Central Office

Notification Form

CEMACH Regional Manager

Notification Form

CEMACH Regional Manager

Unit of delivery and/or deathGeneral Practitioner

Lead Obstetrician

Head of Midwifery

Director of Anaesthetics

Director of Pathology

Others as necessary:• Physicians/surgeons• A&E• Ambulance services• Psychiatric services• Coroner’s office

24

Figure 2: Regional Assessment Process

CEMACH Regional Manager circulates anonymised enquiry form

ObstetricAssessor

AnaestheticAssessor

MidwiferyAssessor

PathologyAssessor

CEMACH Central OfficeData Entry

Assessed Enquiry Form

Assessment

Central Assessors

CEMACH Regional Manager circulates anonymised enquiry form

ObstetricAssessor

AnaestheticAssessor

MidwiferyAssessor

PathologyAssessor

CEMACH Central OfficeData Entry

Assessed Enquiry Form

Assessment

Central Assessors

25

5. NORTHERN DIABETIC PREGNANCY SURVEY Introduction The Northern Diabetic Pregnancy Survey has been running since 1995 and has been managed from the RMSO since 1999. 2002/2003 has been an exciting time for the survey. The CEMACH enquiry into diabetic pregnancy has completed initial data collection and panels will be starting in early 2004. In the Region a number of pieces of work were generated by the summer workshop in June 2002 and progress on these was reported to the workshop in July 2003. This work has been strongly influenced by the findings of the four enquiry panels held in the region in 2002. The total number of pregnancies and the outcomes are shown in Table 1. Table 1: Outcome of Diabetic Pregnancies 1995-2002 Outcome 1995 1996 1997 1998 1999 2000 2001 2002Women Registered 124 127 133 131 135 129 131 139Live Births 97 100 97 102 113 111 102 120Sp. Miscarriage <20 wks gestation1 14 24 28 20 19 12 21 17Sp. Miscarriage 20–23+6 wks gestation

5 0 3 0 0 0 0 0

Terminations 6 3 3 3 2 3 8 1Antepartum Stillbirth 3 3 2 5 5 2 1 3Intrapartum Stillbirth 0 0 1 1 0 0 0 0Early Neonatal Death (0-6 days) 2 0 0 3 0 1 0 0Late Neonatal Death (7-28 days) 2 0 1 0 0 0 0 1Postneonatal Deaths (29-365 days) 0 0 0 0 1 1 0 1Alive at 1 year 93 100 96 99 112 109 102 118Total Outcomes 1252 1293 1344 131 1395 129 1326 1437

Perinatal Mortality Rate 50 29 30 83 42 26 10 24 NOTES: 1. These figures underestimate pregnancy loss <20 weeks 2. 1 set of twins (1 LB 1 ENND) 3. 2 set twins (2LB; 1 LB+1 SB) 4. 1 set twins (all LB) 5. 4 set of twins (all LB), 6. 1 set of twins (LB) 7. 2 sets of twins (all LB) 1 set triplets (1 LND;1 PND; 1 LB) The Enquiry Panels Four panels (twelve cases) were held in 2002 (in April and May). Each panel was chaired by an experienced CESDI chair. As with previous CESDI panels, a range of clinicians (Specialist Diabetes Nurses, Midwives, Neonatal Nurse Practitioners, Obstetricians, Paediatricians, Diabetologists) were present.

26

Panel Process Panels were conducted as previous CESDI panels: • Cases randomly selected from the survey;

• Cases not considered from any of the panel members’ units;

• Fully anonymised obstetric, medical (for duration of this pregnancy) and neonatal notes plus copy of current northern standards circulated to panel members two weeks before the meeting;

• Each case presented by panel members in relation to diabetic and obstetric care;

• Panel assessed care against the standards. Panel findings Findings against the then Northern standards of care (1995, revised 1997) are summarised in Table 2. Access to the notes allowed more detailed assessment of care in relation to the standards. Panels were also asked to highlight any other care issues which may have impacted on outcome. A number of issues emerged: • Lack of information about preconception care. A number of women had high

glycolated haemoglobin at booking. However no set of notes fully documented pre conception advice and in particular the risks associated with pregnancy. Panels recognised that this may be due to not seeing all the relevant notes.

• Overall poor quality of record keeping. Although there was copious information in some notes, it was poorly organised. Conversely there were two sets of notes which were very well organised around a detailed proforma.

• Poor quality discharge information. This was not at the time a standard but there were a number of concerns about discharge care. No notes had recording of detailed contraception and next pregnancy planning advice. Two of the twelve women had become pregnant with the current pregnancy quite quickly after a previous pregnancy and neither of these appeared to have had pre conception folate.

• Suboptimal care. Major suboptimal care occurred in relation to failure to screen for retinopathy in a clinically high risk case. The screening standard was not met in 2/12 cases.

• Glycaemic control. This was very variable with wide variation in how control was recorded. There was evidence in the notes of the mismatch on occasion between clinicians’ decisions and women’s decisions. 2/12 women were admitted with hypoglcaemia.

• Measurement of glucose levels in babies. Apparently 5/12 babies had glucose levels measured by reagent strip (recorded in the notes as “BM”). This either represents poor practice or sloppy recording (i.e., laboratory glucose may have been measured but recorded in shorthand as “BM”).

27

The Summer Workshops – June 2002 and July 2003 The findings of the panels were discussed at the summer workshop in 2002 and a programme of work established on three topics: • Revision of the standards;

• Development of a notes proforma;

• Piloting of enhanced pre conception care in primary care. Feedback on progress was given at the July 2003 meeting and is summarised below. Revision of the standards Standards were revised to incorporate best practice in relation to findings from the panels, updated Diabetes UK standards, and WHO guidance. A process of region-wide consultation and revision culminated in a workshop on the revised standards in July 2003. A final round of consultation then occurred prior to adoption of the revised standards by the steering group in October 2003 (Appendix (iv) Standards of Care for Women with Pre Pregnancy Diabetes and their Babies). The standards have been designed for professional use. However, many of those involved in developing the standards feel that women should be given their own copy. Concerns were expressed about the language used in the standards and the need for more explanatory text. It has been agreed that one unit will pilot the usefulness to women of the standards in their current form. A protocol for this pilot study is being developed. Notes proforma A detailed notes proforma has been developed incorporating the revised standards and good practice from a number of units. This has been finalised alongside the standards. It is hoped that the proforma will provide a useful tool for record keeping and prompting care. Carlisle pilot study This study is underway in one large practice. The aim is to identify the most acceptable (to patients) way of delivering enhanced pre conception care. Women over 16 years of age in the reproductive age group, who are regular attenders for diabetes care, are offered additional advice and HbA1c monitoring at routine review. Women not in regular contact are invited by letter to attend review. All women who become pregnant are fast-tracked to the joint clinic. Trigger events such as request for contraception or post natal review prompt professionals to offer additional pre conception care.

28

Table 2: Findings of Diabetes Panels, 2002 Standard (1995, revised 1997)

Number of cases in which

standard was met

(n=12)

Where standard not met, was this sub-

optimal care?

Underlying Factors

1. Single physician/obstetrician

10

2. Combined clinic

10 2 minor Both A

3. Admissions

6 met standard, 4 not applicable, 2 no information

4. Eyes

10 1 significant 1 major

Both A

5. HbA1c

11 1 no sub-optimal care

6. Target levels and monitoring

10 1 no sub-optimal care 1 minor

A

7. Abnormality scan Echo

11 10

1 no sub-optimal care 1 no sub-optimal care 1 minor

A

8. Serial USS

11 1 minor A

9. Monitoring>34 weeks

9 2 minor Both A

10. Preconception care

4 but incomplete information

1 minor R and A

11. Folic Acid

9

12. Fast tracking

7

13. Infant feeding

10

14. Induction

8 1 significant R and A

15. Baby: Glucose Haematocrit

7 7

16. Baby: Admission to special care

11

1 minor

A

NOTES: 1. Where standard was not met care was classified as “no sub-optimal care”, “minor sub-optimal

care”, “significant sub-optimal care” or “major sub-optimal care”.

2. Underlying factors were categorised as “R= Failure to recognise problem”, “A= Failure to act”, or “O= Other – specify”.

29

6. OBSTETRIC CARE The delivery statistics supplied by the individual units are shown in Table 1. The number of deliveries over the two years seems to have stabilized but there are now only three units delivering over 2000 women per annum. Induction rates The average induction rate for the region has remained very stable but the rate in individual units ranges from 17% to 30%. The reasons underlying this variation are not clear and do not correlate with size of unit or adjusted perinatal mortality rate (PNMR). The assisted delivery rate varies from 5% to 17% but without further information on other aspects of intra-partum care such as use of epidural and augmentation it is difficult to ascertain the reasons for this. It is interesting to note that for most units there is no relationship between the induction rate and rate of assisted vaginal delivery (Figure 1) which is important information for individual units to be able to provide to women. Figure 1: The assisted vaginal delivery rate plotted against the rate of induction in each unit for 2001 and 2002.

Assisted vaginal delivery Assisted vaginal delivery rates comprise both forceps and ventouse and it is interesting to note the trend for a fall in assisted vaginal delivery rates in those units with a higher Caesarean Section (CS) rate. This may imply that caesarean section is being utilised in labour to avoid potentially difficult vaginal deliveries or may reflect a change in the skills available on Delivery Suites.

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

16.0

18.0

20.0

0.0 5.0 10.0 15.0 20.0 25.0 30.0 35.0

Induction rate (%)

Ass

iste

d de

liver

y ra

te (

%)

2001 2002

30

Figure 2: Assisted vaginal delivery rate plotted against Caesarean section rate for 2001 and 2002

Breech presentation The figures for breech relate to presentation at delivery. The incidence has remained unchanged suggesting that opportunities for external cephalic version are not being fully harnessed. The vast majority of breech presentations are now delivered by Caesarean section with between 3 and 39% being delivered vaginally. This will have significant implications for the obstetric skill-base in relation to patient choice for both breech presentations and twins in future.

0.0

5.0

10.0

15.0

20.0

25.0

0.0 5.0 10.0 15.0 20.0 25.0

Caesaren Section rate (%)

Ass

iste

d va

gina

l del

iver

y ra

te (

%)

2001 2002 Linear (2001) Linear (2002)

31

Figure 3: Number of live and stillborn babies, by unit 2001 and 2002

NOTE: For Figures 3-7 data from individual units are ranked by increasing number of births in 2001. Some data was not provided. Figure 4: Rate of antepartum stillbirths per 1,000 live and stillborn babies, by unit 2001 and 2002

NOTE: For Figures 3-7 data from individual units are ranked by increasing number of births in 2001. Some data was not provided.

0

1,000

2,000

3,000

4,000

5,000

6,000

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Unit ranked by number of births

Tota

l num

ber

of li

ve a

nd s

till

born

bab

ies

2001 2002

0.0

2.0

4.0

6.0

8.0

10.0

12.0

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Unit ranked by number of births

Rat

e pe

r 1,

000

live

and

still

birt

hs

2001 2002

32

Figure 5: Induction rate (%), by unit 2001 and 2002

NOTE: For Figures 3-7 data from individual units are ranked by increasing number of births in 2001. Some data was not provided. Figure 6: Rate of assisted vaginal delivery (%), by unit 2001 and 2002

NOTE: For Figures 3-7 data from individual units are ranked by increasing number of births in 2001. Some data was not provided.

0.0

5.0

10.0

15.0

20.0

25.0

30.0

35.0

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Unit ranked by number of births

Indu

ctio

n ra

te (

%)

2001 2002

0.0

2.0

4.0

6.0

8.0

10.0

12.0

14.0

16.0

18.0

20.0

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Unit ranked by number of births

Rat

e of

ass

iste

d va

gina

l del

iver

y (%

)

2001 2002

33

Figure 7: Caesarean section rate (%), by unit 2001 and 2002

NOTE: For Figures 3-7 data from individual units are ranked by increasing number of births in 2001. Some data was not provided.

0.0

5.0

10.0

15.0

20.0

25.0

30.0

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Unit ranked by number of births

Cae

sare

an S

ecti

on r

ate

(%)

2001 2002

34

Table 1: Delivery Statistics supplied by units; figures in brackets are %

Unit Maternities Births Twins Breech Induction NVD Assisted Caesarean Section

2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 2001 2002 Hartlepool 1,530 1,576 1,552 1,596 22

(1.4) 20

(1.3) 51

(3.29) 46

(2.9) 275 (18)

305 (19.4)

1,067 (68.7)

1,138 (71.3)

70 (4.5)

76 (4.8)

n/a n/a

North Tees 1,875 1,966 1,898 2,002 23 (1.2)

32 (1.6)

98 (5.2)

95 (4.7)

364 (19)

414 (21)

1,346 (71)

1,380 (69)

190 (10)

219 (11)

n/a 310 (15.5)

James Cook University Hospital

3,403 3,296 3,470 3,394 65 (1.9)

92 (2.8)

64 (1.8)

112 (3.3)

799 (23)

931 (28.2)

2,370 (68)

2,177 (64.1)

272 (7.8)

404 (11.9)

713 (21)

639 (18.8)

Cumberland Infirmary

1,436 1,472 1,467 1,500 28 (1.9)

28 (1.9)

56 (3.82)

59 (3.9)

324 (23)

337 (22.9)

1,020 (70)

1,075 (71.7)

91 (6.2)

80 (5.3)

361 (24.6)

354 (23.6)

West Cumberland Infirmary

1,184 1,163 1,202 1,183 18 (1.5)

20 (1.7)

45 (3.7)

38 (3.2)

347 (29)

n/a 877 (73)

854 (72.2)

78 (6.5)

95 (8)

229 (19)

181 (15.3)

Penrith 149 149 153 (100)

Darlington 1,209 1,313 1,220 1,335 11 (0.9)

22 (1.7)

n/a n/a n/a 416 (32)

861 (70.1)

951 (71.2)

100 (8.2)

112 (8.4)

248 (20.3)

260 (19.5)

Bishop Auckland 1,392 1,323 1,404 1,336 12 (0.9)

13 (1)

n/a n/a 279 (20)

245 (18.5)

1,016 (72.4)

929 (70)

117 (8.3)

127 (9.5)

252 (18)

274 (20.5)

University Hospital of North Durham

1,971 2,105 1,998 2,125 27 (1.4)

23 (1.1)

77 (3.9)

20 (1)

396 (20)

484 (23)

1,384 (69.3)

1,491 (70.1)

213 (10.7)

194 (9.1)

294 (14.7)

432 (20.3)

Sunderland 2,962 3,030 2,996 3,073 32 (1.1)

37 (1.2)

99 (3.3)

117 (3.8)

367 (12.4)

517 (17.1)

2,062 (68.8)

2,125 (69.2)

381 (12.7)

405 (13.2)

358 (12)

373 (12.1)

South Tyneside n/a 1,368 n/a 1,395 n/a 27 (2)

n/a 54 (3.87)

n/a 294 (21)

n/a 964 (69.1)

n/a 140 (10)

n/a 262 (18.8)

Gateshead 1,613 1,545 1,641 1,571 26 (1.6)

26 (1.7)

69 (4.2)

62 (4)

300 (18.6)

305 (19.7)

1,180 (72)

1,126 (71.7)

148 (9)

93 (5.9)

244 (15)

290 (18.5)

North Tyneside 1,647 1,641 1,666 1,662 19 (1.2)

19 (1.2)

79 (4.7)

75 (4.5)

320 (19)

340 (20.7)

1,190 (71)

1,176 (70.8)

136 (8.2)

131 (7.9)

242 (14.5)

265 (15.9)

Wansbeck 1,601 1,688 1,618 1,711 15 (0.9)

21 (1.2)

61 (3.8)

83 (4.9)

397 (25)

346 (20.5)

988 (61)

1,032 (60.3)

209 (12.9)

231 (13.5)

350 (21.6)

351 (20.5)

Berwick 50 52 50 52 50 (100)

52 (100)

Alnwick 88 79 88 79 79 (100)

Hexham 653 662 658 670 5 (0.77)

8 (1.2)

32 (4.86)

14 (2.1)

165 (25.3)

165 (24.9)

447 (67.9)

n/a 90 (13.4)

58 (8.7)

116 (17.6)

115 (17.2)

Newcastle RVI 4,607 4,662 4,686 4,781 63 (1.37)

110 (2.4)

165 (3.5)

166 (3.5)

853 (18.5)

775 (16.6)

2,871 (61.3)

2,946 (61.6)

829 (17.7)

820 (17.2)

888 (19)

844 (17.7)

Total 28,738 29,172 29,158 29,697 393 498 954 889 5,481 5,874 19,840 20,372 3,066 3,185 4,505 4,950

35

7. MATERNAL MORBIDITY SURVEY

The maternal morbidity survey ran from 1997 and has accumulated five years of data. However, the nature and importance of the data relates primarily to risk management, and in this respect the role of the survey has been superseded by the advent of the National Patient Safety Agency (NPSA). With this in mind, the RMSO opened a discussion with the NPSA in a meeting on 28th May 2003, to explore how our common interests might best be served, and how the existing data set could most constructively be used. In line with the NPSA developments, we have closed further reporting to the register. The upshot of our meetings has been an agreement to work with the NPSA on a project to examine how confidential enquiry (re-badged for this purpose as ‘anonymised case review’, or ACR) compares with root cause analysis (RCA) when trying to get to the underlying factors behind the maternal morbidities that we have been logging. The events we have been registering are: • Eclampsia;

• Blood transfusion ≥ 6 units;

• Admission to ITU;

• Renal failure (needing dialysis);

• Hysterectomy;

• Thrombotic event. The plan is to use the register to undertake the comparison exercise both retrospectively and prospectively. Details are still being worked out, but in due course we expect to be looking out for people willing to participate in enquiry panels.

36

8. NEONATAL INTENSIVE CARE Intensive care workload The intensive care workload in baby-days that has been handled by the Northern Neonatal Network provider hospitals (RVI Newcastle, Sunderland, North Tees, and The James Cook Hospital in Middlesbrough) is shown in Figure 1 for the eleven years 1992 to 2002 inclusive. Figure 1: Intensive care workload (intensive care days) for the Northern Neonatal Network, 1992-2002

The striking feature is that in spite of the reduced birth rate, down 25% over that epoch, the intensive care workload has been steadily rising by an average of 3.3% per year. This has several implications: • When the Northern Neonatal Network was created, one of the assumptions was that a

given birth rate would result in a stable demand for neonatal intensive care. This was clearly wrong.

• The network will run out of capacity. Figures for out-of-region transfer of babies (not given here) suggest that this is beginning to happen.

• Demand for neonatal intensive care is likely to increase even faster once the birth rate stops falling and starts to rise again; data for 2002 suggest that the decline has probably ended.

6,000

7,000

8,000

9,000

10,000

1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002

Inte

nsiv

e ca

re w

orkl

oad

(int

ensi

ve c

are

days

)

25,000

30,000

35,000

40,000

45,000

Northern R

egion number of births

Intensive care workload Number of births

37

Other demographic changes will have unpredictable effects. For instance, it is known that the decline in birth rate has been most pronounced in more affluent, low risk women.3 Conversely, many of these have been delaying pregnancies for a variety of reasons, and will be relatively older when they decide to try for pregnancies. Neonatal risks increase with maternal age. At the same time fertility declines so that more of these women may seek reproductive assistance such as in vitro fertilisation, thus increasing the proportion of multiple pregnancies, which also increases neonatal risks. Nursing dependency Both within the Northern Neonatal Network, and nationally, there has been some concern that the existing systems for grading the dependency of babies in intensive care, and hence robustly measuring the workload and aligning staff numbers to neonatal need, has been in need of overhaul. This topic was originally addressed before the network came into being.4 However, in the last 10 years both case mix and clinical practice have changed. In 2002, we therefore examined neonatal nursing dependency in the context of current practice, with a view to: • Re-examining the Northern Region criteria;

• Validating those of the BAPM (British Association for Perinatal Medicine) (revised);

• Evaluating the Nottingham scoring system (Gibbs). We performed activity sampling analysis of nursing activity by trained observers at 10 minute intervals for three 12 hours day shifts and one 12 hour night shift and we coded work using a taxonomy of nursing activities. We also recorded the grades of nurse and the dimensions making up each of the category systems. Between 27 and 30 babies were observed on each shift. Sufficient nursing capacity was available to allow all babies to receive the care they needed. No babies scored at the highest level of the Nottingham system (‘E’). Babies receiving ‘normal’ baby care took similar amounts of nursing time to those receiving ‘special care’, and are counted together in the analysis in Table 1. For each of the systems of categorisation (BAPM, Northern Region and Nottingham), the grades are given to the left, while the amount of care given on average is shown in minutes per baby per hour. A baby could potentially receive more than 60 minutes of care per hour if more than one nurse was giving it. Table 1: Nursing activity and care levels

BAPM Northern Nottingham E Not

applicable1 50.6 A (Vent) 55.6 I 60.22 31.5 A (nCPAP) 30.4 H 37.9 B 30.3 3 20.3 C/D 21.0 S 21.2

3 Bundred P, Manning D, Brewster et al. Social trends in singleton births and birth weight in Wirral residents, 1990-2001. Arch. Dis. Child. Fetal Neonatal Ed. 2003;88:F421-425. 4 Arch Dis Child 1993;68:534-38, and 1993;68:539-43

38

It can be deduced from Table 1 that on average, a three category scale seems to provide an adequate functional description of neonatal unit workload. Babies on nasal continuous positive airways pressure support (nCPAP) required nursing time equivalent to the BAPM high dependency category (H) or Northern Region category B, but babies at the highest level of intensive care occupied the full attention of a single nurse. Fully orally fed babies needed similar nursing input to those in low dependency (special) care. These data were presented at the Neonatal Society Summer meeting, June 2002. Neonatal transport Transport activity is shown in Table 2 for the six years 1997 to 2002. As with the intensive care workload, the pattern of sustained rise in activity is evident. The team based in Newcastle undertakes two thirds of the transfers overall, and three quarters of the neonatal medical transfers. Neonatal cardiology transfers, though only a small proportion of the total, have more than doubled over this time. There has been a small increase in paediatric work: this is where the neonatal activities overlap with PICU (Paediatric Intensive Care) for the transport of relatively small infants in the bronchiolitis season. Outcome by birth weight and gestation Table 3 gives the outcome to discharge for babies cared for in the Northern Neonatal Network provider hospitals, aggregated over the three years 1999 to 2001. The numbers do not equate to those in the other tables because they are not population based, and the denominator is not live birth but admission to the relevant NICU. For these reasons the outcomes cannot be compared with population based data from regions such as Trent, nor with studies such as Epicure.5 However they provide up to date information upon which clinicians can base discussions with parents whose babies have been admitted to neonatal intensive care. Survival with a birth weight under 500g was very unlikely, but survival for babies < 24 weeks was better, over this triennium, than we might have expected. On these data the regional ‘break-even’ point – the gestation where survival chances exceed 50:50 - is between 24 and 25 weeks for babies admitted for intensive care. As ever, it remains a priority for the RMSO to achieve ascertainment of the gestational ages of all babies born in the region so that we have denominator data for gestation and not just birth weight. The development of a register of high-risk babies A collaborative business plan has been developed between the RMSO and the Northern Neonatal Network to develop a new register for high risk babies. NICE guidance requires that all babies with symptomatic neonatal encephalopathy are followed up and their outcome is audited. As outcomes will increasingly drive commissioning, the information needs of the Northern Neonatal Network will have to include capture of outcome data on babies in a number of categories: • <32 weeks gestation at birth, OR

• <1500g birth weight, OR

5 Costeloe K, Hennessey E, Gibson AT, Marlow N, Wilkinson AR. The EPICure study: outcomes to discharge from hospital for infants born at the threshold of viability. Paediatrics 2000;106:659-71.

39

• With seizures in the first week, OR

• Ventilated for any reason, OR

• Had an exchange transfusion. We have chosen these categories to map onto those used elsewhere, such as the Trent Neonatal Survey,6 so that appropriate regional comparisons can be undertaken. Once funding is established we intend to develop the data management systems to create a live register of all babies in the above categories, and establish robust systems for ascertaining their outcomes at two years corrected age. The future of the Northern Neonatal Network During the year 2002 the network undertook a comprehensive review of its services and configuration, and this work continues. Pressures such as the increase in clinical activity; constraints such as junior doctor hours, and availability; and the advent of the European Working Time Directive have all impacted upon the stability of the network as it was originally conceived. There remains a commitment to providing a high quality neonatal intensive care service to the population of the former Northern Region, based on a collaborative managed clinical network. We intend to summarise the outcome of these discussions in a subsequent Annual Report.

6 Field DJ, Hodges S, Mason E, Burton P et al. The demand for neonatal intensive care. BMJ 1989;299:1305-8.

40

Table 2: Neonatal transfer service activity 1997-2002 by type

Newcastle Middlesbrough Totals Year

1997

1998

1999

2000

2001

2002

1997

1998

1999

2000

2001

2002

1997

1998

1999

2000

2001

2002

Neonatal Medicine 156 173 198 176 167 216 52 43 48 57 49 72 208 216 246 233 226 288 Surgery 28 21 26 16 18 31 10 13 13 17 21 26 38 34 39 33 39 57 Cardiology 28 37 41 35 43 63 7 4 7 13 21 27 35 41 48 48 64 90 Paediatric Medicine 28 26 22 30 21 27 3 6 7 13 9 14 31 32 29 43 30 41 Surgery 2 4 0 1 1 0 0 0 1 1 0 6 2 4 1 2 1 6 Cardiology 8 2 3 1 2 2 2 0 0 0 2 0 10 2 3 1 4 2 ECMO1 11 11 16 11 19 24 1 1 1 0 0 1 12 12 17 11 19 25 Other 1 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 Totals 262 274 306 270 271 363 75 67 77 101 102 146 337 349 383 371 373 509

NOTES: 1. ECMO – extra corporeal membrane oxygenation

41

Table 3: Outcome at discharge for babies cared for in provider hospitals (aggregated 1999-2001) Birthweight (g) <500 500-749 750-999 1000-12491250-1499 1500-1999 2000-2499 >2499 All Live Total Live Total Live Total Live Total Live Total Live Total Live Total Live Total Live Total Live % Gestation (weeks)<24 0 3 4 14 0 1 0 0 0 0 0 0 0 0 0 0 4 18 22%24 0 2 8 35 4 7 0 0 0 0 0 0 0 0 0 0 12 44 27%25 1 2 5 16 25 36 1 1 0 0 0 0 0 0 0 0 32 55 58%26 0 0 8 14 30 45 15 18 1 1 0 0 0 0 0 0 54 78 69%27 0 0 5 6 33 39 36 38 6 7 0 0 0 0 0 0 80 90 89%28 0 1 8 11 28 31 68 79 31 38 5 7 0 0 0 0 140 167 84%29 0 0 5 5 15 17 46 50 78 79 18 21 0 0 0 0 162 172 94%30 0 0 0 1 16 18 35 37 64 64 57 57 1 2 0 0 173 179 97%31 0 0 0 0 3 5 15 15 36 38 109 112 13 14 1 1 177 185 96%32 0 0 1 1 2 3 13 13 35 36 139 142 68 68 3 3 261 266 98%33 0 0 0 0 3 3 8 9 18 20 110 116 124 126 23 24 286 298 96%34 0 0 0 0 0 0 6 6 14 14 100 104 173 176 63 65 356 365 98%35 0 0 0 0 0 0 3 4 8 9 63 64 131 132 124 125 329 334 99%36 0 0 0 0 0 0 0 0 2 2 50 51 87 91 160 164 299 308 97%37 0 0 0 0 0 0 0 0 1 1 24 25 57 58 195 203 277 287 97%38 0 0 0 0 0 0 0 0 0 0 14 16 45 46 299 310 358 372 96%39 0 0 0 0 0 0 0 0 0 0 1 1 31 31 258 263 290 295 98%40 0 0 0 0 0 0 0 0 0 0 0 0 9 10 303 315 312 325 96%41 0 0 0 0 0 0 0 0 0 0 1 1 8 8 228 233 237 242 98%>41 0 0 0 0 0 0 0 0 0 0 0 0 2 2 89 91 91 93 98%Totals 1 8 44 103 159 205 246 270 294 309 691 717 749 764 1746 1797 3930 4173 94%Live % per Birthweight band 13% 43% 78% 91% 95% 96% 98% 97% 94%

42

9. NORTHERN MULTIPLE PREGNANCY REGISTER This initiative has been extremely well supported throughout the region, and we are immensely grateful to all those who have notified cases; in particular, this report would not have been possible without the commitment and support of many local co-ordinators who have completed data sheets. The following represents an overview of the data available for pregnancies delivering during the first four years of the register, 1998-2001; the greater benefits of this project will only become apparent with the ability to observe trends over time, and in using the register as the basis for clinically relevant prospective studies. Realising the full potential will also depend on obtaining chorionicity data in virtually all cases: please send all placentas from like sex multiple pregnancies for determination of chorionicity by pathological examination! This report relates mainly to twin pregnancies, and includes only a selection of the information collected for each pregnancy. Numbers, gestation, sex and chorionicity Table 1: Numbers of multiple pregnancies, 1998-2001 1998 1999 2000 2001 Twin pregnancies 478 448 461 431Twin maternities1 432 417 424 413Triplet pregnancies 17 22 15 10Higher order multiple pregnancies 2 1 1 2Twinning Rate per 1,000 maternities 13.6 13.6 14.5 14.4Total maternities 31,737 30,652 29,331 28,618

NOTES: 1. Maternities are pregnancies with at least one live birth or stillbirth.

These twinning rates (13.6, 13.6, 14.5, and 14.4) compare with rates of 9.8 in 1990 and 12.0 in 1994. In 2001, twin pregnancies were detected before 13 weeks gestation in 74.5% of registered cases, and by 18 weeks in around 94%. Table 2: Gestation at diagnosis Gestation at diagnosis (weeks) 1998

% 1999

% 2000

% 2001 % (n)

<9 22.6 20.8 26.5 26.2

(113)

9-12 38.3 40.2 36.7 48.3 (208)13-18 31.6 24.3 19.5 20.0 (86)19-24 5.4 10.5 11.3 3.9 (17)>24 0.8 1.6 1.3 0.5 (2)not recorded 1.3 2.7 4.8 1.2 (5)

43

Chorionicity data are currently available for approximately 87% of twin maternities in 2001, a three percent improvement over 2000. However, the ideal is 100% and this figure could be approached if all twin placentas from like sex twins were sent for pathological examination. Outcome data related to chorionicity are given later in this section. Table 3: Sex of infants and placental chorionicity by year % maternities

1998 1999 2000 2001 male-male 33.6 30.7 27.4 32.0female-female 30.6 30.7 33.3 31.5male-female 32.6 32.1 34.4 30.5not known (early loss) 3.2 6.5 5.0 6.0 dichorionic 65.5 65.9 66.7 69.7monochorionic 15.5 17.3 17.5 17.7 not known 19 16.8 15.8 12.6

Outcomes Table 4 summarises outcomes for twin pregnancies during 2001. Table 4: Outcomes for all registered pregnancies during 2001

TWIN 2 TWIN 1

Spon

tane

ous

abor

tion1

Term

inat

ion

of P

regn

ancy

Still

birt

h

Early

N

eona

tal

Dea

th

Late

Neo

nata

l D

eath

Surv

ivor

Tota

l

Spontaneous abortion1

11 11

Termination of Pregnancy

1 6 7

Stillbirth 1 3 4Early Neonatal Death

1 4 2 7

Late Neonatal Death

1 1

Survivor 23 1 2 2 1 372 401Total 36 7 2 7 1 378 431

NOTES: 1. Spontaneous abortions, include ‘vanishing’ twins

44

Mortality • 47 fetuses were lost spontaneously before 24 weeks in 2001.

• Among the 413 maternities in 2001 there were 6 stillbirths (all antepartum), 14 early neonatal deaths and 2 late neonatal deaths.

• In 2001 the overall perinatal mortality rate was 24.2 per 1,000 total twin births, and the infant mortality rate 20.1 per 1,000 live births (Northern Region 2001 singleton perinatal mortality rate = 7.2 per 1,000 total singleton births; singleton infant mortality rate = 4.8 per 1,000 live births).

• Perinatal mortality was slightly higher for twin 1 (26.6 per 1,000) than twin 2 (21.8 per 1,000).

• Chorionicity data are currently available for 361 maternities, and for 16 of the 17 maternities where there was at least one stillbirth or infant death. The monochorionic group (n=73) includes 2 stillbirths and 2 early neonatal deaths, giving a perinatal mortality rate of 27.4 per 1,000 total births. Within the dichorionic group (n=288) there were 4 stillbirths and 11 early neonatal deaths, giving a perinatal mortality rate of 26.0 per 1,000 total births. However, given that chorionicity data is incomplete these rates must be treated with caution.

• A summary of mortality data for 2001 is given in Table 5. Table 5: Mortality data for 1998-2001 1998 1999 2000 2001 Losses <24w (all pregnancies) 7.5% 7.2% 6.8% 5.4%Stillbirths (n) 15 19 17 6Early Neonatal Deaths (n) 10 25 18 14Late Neonatal Deaths (n) 5 8 3 2 Perinatal mortality (per 1,000 total births) 28.9 52.8 41.3 24.2Infant mortality (per 1,000 live births) 18.0 48.2 29.5 20.1 PNMR – monochorionic 67.2 69.4 69.6 27.4PNMR – dichorionic 24.7 43.6 28.3 26.0

Pregnancies with one intrauterine death and one live birth In 23 pregnancies one twin was live born after intrauterine death (IUD) of the other twin before 24 weeks gestation; chorionicity is available for few of these cases, which is not surprising given the difficulty of establishing chorionicity by pathological examination many weeks after early death of one twin. In a further 6 pregnancies, one twin was stillborn and the other live born; chorionicity is currently available for all of these (dichorionic in 4, monochorionic in 2). In total, therefore there were 29 twin pregnancies (6.7%) with one live born twin; in those cases where placentation was monochorionic there is the potential for neurological impairment in the survivor due to haemodynamic events following death of the other twin.

45

Congenital anomalies In 2001, 22 pregnancies were complicated by anomaly, involving 25 infants (2.9% of 864 infants from 431 pregnancies). • Chorionicity was known for 17 pregnancies: 13 dichorionic, 4 monochorionic

• Outcomes: of the 22 pregnancies, 3 were terminated; of 16 live born twins with congenital anomalies, 14 (88%) were alive at one year.

• Overall for 1998-2001: 119 pregnancies were complicated by anomaly, involving 139 individuals (3.8% of all twins), with the following outcomes: 11 terminated pregnancies; 2 selective reductions; 98 live born twins with 82 (84%) alive at one year.

Types of anomaly for 1998-2001 are described in table 6. Table 6: Types of anomaly 1998-2001 Type of anomaly Number of twins Anomalies associated with twinning conjoined twins 8 (4 sets)TRAP sequence (acardiac twins) 3Chromosomal anomalies trisomy 21 6trisomy 18 5other 9Central nervous system neural tube defects 12other 7Cardiovascular isolated VSD 16other 15Abdominal wall defects 3Renal/urinary tract Renal dysplasia 4hydronephrosis 6other 4Other anomalies 41Total 139

Management of labour and delivery The following data can be compared with that given for all births in Chapter 6 – Obstetric Care: • The onset of labour was spontaneous in 194 maternities (46.9%) and induced in 85

(20.6%). There was no labour in 132 (32.0%). [The corresponding figures for 2000 were 46.6%, 21.7%, and 27.6%, respectively].

• The mode of delivery for both twins (413 maternities) is summarised in Table 7. The proportion of infants delivered by caesarean section in 2001 was slightly lower than that in 2000.

46

Table 7: Mode of delivery by year

1998 1999 2000 2001 Mode of delivery Twin 1

(%) Twin 2

(%) Twin 1

(%) Twin 2

(%) Twin 1

(%) Twin 2

(%) Twin 1

(%) Twin 2

(%) Normal 41.9 25.0 36.0 19.0 33.5 21.7 36.8 21.8Forceps 4.9 4.1 6.0 4.5 5.0 2.1 5.1 3.3Ventouse 7.7 5.1 5.5 4.8 4.5 4.0 6.3 4.4Breech 1.9 18.0 2.6 13.0 1.7 13.4 2.2 14.3Section 43.5 44.0 49.0 52.0 51.6 51.4 49.1 49.6Other - - - - 0.2 0.2 0.2 0.2Unrecorded 0.7 4.4 1.0 7.0 3.5 7.1 0.2 6.3TOTAL 100.0 100.0 100.0 100.0 100.0 100.0 100.0 100.0

Gestation at delivery Over half the 413 maternities in 2001 were delivered before 37 weeks (Table 8). Table 8: Gestation at delivery Gestation (wks) 1998 1999 2000 2001 n % n % n % n % ≤23 1 0.2 6 1.4 4 0.9 5 1.224-27 10 2.3 14 3.4 11 2.6 8 1.928-31 24 5.6 39 9.4 32 7.5 33 8.032-36 176 40.7 168 40.3 171 40.3 168 40.737-41 219 50.7 188 45.1 192 45.3 195 47.2>41 2 0.5 2 0.5 6 1.4 2 0.5unknown 8 1.9 2 0.5

Admission to SCBU In 2000, 42.1% of the 416 live born first twins were admitted to SCBU, compared with 42.8% of 398 live born second twins. The corresponding figures for 2001 were 42.3% and 45.3%. Publications and presentations based on the MPR data 1. GLINIANAIA SV, RANKIN J, WRIGHT C, STURGISS S, RENWICK M. A Multiple

Pregnancy Register in the North of England. Twin Research 2002; 5 (5): 436-439.

2. WRIGHT C, GLINIANAIA S. Congenital anomalies in twins, Northern Region of England 1998-2000. British Isles Network of Congenital Anomaly Registers (BINOCAR) Annual Meeting, 30 Sep-1 Oct 2002, Oxford (oral presentation).

3. GLINIANAIA SV, WRIGHT C. Congenital abnormalities in twins, Northern Region of England 1998-1999. 10th International Congress on twin studies. London, 4-7 July 2001 (oral presentation).

4. GLINIANAIA SV, WRIGHT C, RANKIN J, RENWICK M. Multiple Pregnancy Register in the North of England: 1998-1999 results. 10th International Congress on twin studies. London, 2001 (poster).

5. GLINIANAIA SV, RANKIN J, RENWICK M, WRIGHT C, PHAROAH POD, STURGISS SN. The Northern Multiple Births Register: CESDI, Manchester, 2000 (poster).

47

6. GLINIANAIA SV, RANKIN J, PHAROAH POD, RENWICK M, WRIGHT C, STURGISS S. Twin studies in the north of England. 12th International Workshop on Multiple Pregnancy “From curiosity to epidemic”. Assisi, Italy, 1999 (poster).

48

10. NORTHERN CONGENITAL ABNORMALITY SURVEY Background The Northern Congenital Abnormality Survey (NorCAS, formerly the Fetal Abnormality Survey) was established in 1985 following a pilot year. Its remit is to obtain data on all congenital abnormality arising within the population of the former Northern region, whether occurring in miscarriage, terminations or registered births and whether diagnosed antenatally or not. Since the reorganization of NHS boundaries in 1995, data from South Cumbria is no longer registered onto the Survey. Mothers resident in the Region who deliver outside the region are included but the Survey excludes cases from mothers resident outside the region who deliver within the region. Table 1 shows the number of cases and total prevalence (the number of cases occurring in miscarriages > 20 weeks, terminations and registered births divided by the total number of registered births) of selected congenital anomalies notified to NorCAS during 1985-2001. Neural tube defects Figure 1 shows the changes in the total prevalence (the number of cases occurring in miscarriages > 20 weeks, terminations and registered births divided by the total number of registered births) of neural tube defects (combining anencephaly, spina bifida and encephalocele), and the total prevalence for anencephaly and spina bifida. The total prevalence of neural tube defects has declined from 19.7 per 10,000 registered births in 1986 to 12.3 per 10,000 in 2001 in the region. Although national figures are known to be incomplete, the prevalence of NTDs for England and Wales has been declining since 1975 but the decline levelled at just under 8.0 per 10,000 births in the 1990s.7 In the Northern Region, a similar plateau may have been reached between 1996 and 2001 although at a higher level than the national rate.8 Whether this decline in total prevalence is due to increased intake of preconception folic acid is unknown but as the decline predated the MRC’s recommendations on folic acid supplementation, other factors must be in play. The birth prevalence (the number of cases occurring in registered births) of neural tube defects has also declined. Against a background of a national reduction in NTD, there have been considerable improvements in prenatal diagnosis and subsequent termination of affected pregnancies. This has enhanced the decline, resulting in a two-fold decrease in birth prevalence in the Region between 1984-90 and 1991-96.5 7 Murphy M, Seagroatt V, Hey K, O’Donnell, Godden M, Jones N, et al. Neural tube defects 1974-94 - down but not out. Archives of Disease in Childhood 1996;75:F133-4. 8 Rankin J, Glinianaia S, Brown R, Renwick M. The changing prevalence of neural tube defects: a population based study in the North of England, 1984-96. Paediatric & Perinatal Epidemiology 2000;14:104-10.

49

Table 1: Notifications to NorCAS of selected congenital anomalies, 1985-2001. Congenital Anomaly Total no.

of cases1 Total prevalence per 10,000

registered births [95% confidence interval]

Nervous system Anencephalus and similar 428 6.9 [6.2 - 7.5]Spina bifida 488 7.9 [7.2 - 8.5]Hydrocephaly 160 2.6 [2.2 - 3.0]Encephalocele 67 1.1 [0.8 - 1.3] Congenital heart disease Transposition of great vessels 189 3.0 [2.6 - 3.5]AVSD 62 1.0 [0.8 - 1.3]Tetralogy of Fallot 157 2.5 [2.1 - 2.9]Hypoplastic left heart 108 1.7 [1.4 - 2.1]Coarctation of aorta 210 3.4 [2.9 - 3.8] Cleft lip with/without palate 370 6.0 [5.3 - 6.6]Cleft palate 199 3.2 [2.8 - 3.6] Digestive system Tracheo-oesophageal fistula, oesophageal atresia and stenosis

143 2.3 [1.9 - 2.7]

Small intestine atresia 96 1.5 [1.2 - 1.9]Ano-rectal atresia and stenosis 91 1.5 [1.2 - 1.8] Urinary system Bilateral renal agenesis 73 1.2 [0.9 - 1.4]Cystic kidney disease 331 5.3 [4.7 - 5.9] Musculoskeletal system Limb reduction defects 184 3.0 [2.5 - 3.4]Diaphragmatic hernia 183 2.9 [2.5 -3.4]Exomphalos 99 1.6 [1.3 - 1.9]Gastroschisis 198 3.2 [2.7 - 3.6] Chromosomal Down’s syndrome 940 1.5 [1.4 - 1.6]Trisomy 13 (Patau) 81 1.3 [1.0 -1.6]Trisomy 18 (Edwards) 190 3.1 [2.6 - 3.5] Total number of registered births 621,872

NOTE: 1. The number of cases occurring in miscarriages > 20 weeks, terminations and registered births.

50

Figure 1: Trends in the total prevalence of neural tube defects in the Northern Region, 1986-2001

Trends in termination for congenital anomaly Between 1985 and 2002, approximately 16% of all pregnancies notified to NorCAS ended in a termination (Figure 2); the rate has increased form 12.5% in 1985 to 18.3% in 2002. This increase probably reflects an increase in the proportion of congenital anomalies detected as well as earlier detection from the increasing use of first trimester screening. Figure 2: Terminations of pregnancy for fetal anomaly, 1985-2001

0

5

10

15

20

25

1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001

Rat

e pe

r 10

,000

bir

ths

All NTDs Anencephaly Spina bifida

0

5

10

15

20

25

1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002

Rat

e of

ter

min

atio

ns (

%)

Terminations of pregnancy

51

Gastroschisis and exomphalos During the course of the last decade the prevalence of gastroschisis has continued to rise without a corresponding increase in exomphalos, another congenital anterior abdominal wall defect (see Figure 3). This increase has been observed regionally, nationally and internationally9 and is now the subject of investigation (see below). Figure 3: Secular change in gastroschisis and exomphalos total prevalence rates in the Northern Region, 1986-2001

New Developments 2003 has been an exceptional year for NorCAS. The survey received a very welcome boost with the commitment of five years infrastructure funding from the Department of Health. With the abolition of Health Authorities, the mechanism for funding NorCAS was insecure and there were serious concerns about its continuation. The investment of funding to 2008 will contribute to the continuation of this long standing survey and also encourage continued contribution to research. In January 2003, the RMSO commenced electronic data transfer to the National Congenital Anomaly System (NCAS) operated by the Office for National Statistics. NCAS is known to be incomplete10 and such data transfer between regional registers will go a long way to improving national ascertainment as well as the continued validation of regional data.

9 Rankin J, Dillon E, Wright C. Congenital Anterior Abdominal Wall Defects in the North of England, 1986-1996: Occurrence and Outcome. Prenatal Diagnosis 1999;19:662-68. 10 Working Group of the Registrar General’s Medical Advisory Committee. The OPCS monitoring scheme for congenital malformations. London: Office of Population Census and Surveys, 1995.

0

1

2

3

4

5

6

7

8

1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001

Rat

e pe

r 10

,000

bir

ths

Gastroschisis Exomphalos

52

NorCAS has also been accepted as a member of the European Register of Congenital Anomalies (EUROCAT), a network of European congenital anomaly registers from 31 countries.11 This partnership provides NorCAS with further opportunities for research collaboration. NorCAS continues to be an active member of the British Network of Congenital Anomaly Registers (BINOCAR) with regular presentation of data at this forum. Consent Explicit consent has not been sought from parents for the inclusion of information about their babies on the NorCAS database. Recent national debate has highlighted the need for informed consent except in exceptional and justifiable circumstances. Along with the other nine BINOCAR registers, NorCAS has been given Section 60 approval to continue to hold data without consent. However, approval was granted on the basis that ways of obtaining consent were investigated. It is intended that a consistent approach will be adopted across all the registers Research There is widespread concern that changes both in individual lifestyle (e.g., diet and use of tobacco, prescribed and illegal drugs), and in environment exposures such as to endocrine disruptors and particulate air pollution, impact especially on the health of children reflecting their unique vulnerability.12 Without adequate population based data such questions are very difficult to answer and clearly high quality registers such as NorCAS have an essential role in providing the means to address these important societal concerns. NorCAS is a valuable case identification mechanism for aetiological research, and for prospective research involving longer term follow up to determine the outcome of specific conditions. For many anomalies, robust information about prognostic factors and appropriate interventions is lacking. Such information from long-term prospective follow up studies is required both to give appropriate information to parents when an antenatal diagnosis is confirmed, and also to identify factors associated with successful outcome. We are currently developing survival and follow up studies of children born with congenital anomalies. Table 2 shows survival of children with congenital anomalies born between 1985 and 2001. The classification of cases is based on the primary postnatal diagnosis.

11 EUROCAT. Report 8. Surveillance of congenital anomalies in Europe 1980-99. University of Ulster, 2002. 12 Children’s Health and Environment: A review of evidence. Eds. G. Tamburlini, O.S. von Ehrenstein, R. Bertollini. Online web site http://www.euro.who.int/childhealth

53

Table 2: Survival of children with selected congenital anomalies, 1985-2001 Congenital Anomaly1 No. of deaths

within the first year

No. of children surviving more than 1 year

Total

Nervous system 146 361 507 Anencephaly 16 - 16 Spina bifida with hydrocephaly 50 54 104 Spina bifida without hydrocephaly 13 82 95 Hydrocephaly 28 82 110 Encephalocele 6 8 14 Circulatory system 379 3,629 4,008 Transposition 36 148 184 AVSD 13 47 60 Tetralogy of Fallot 12 141 153 Hypoplastic left heart 77 3 80 Coarctation 20 191 211 Cleft lip with/without cleft palate 5 371 376Cleft palate 6 195 201 Digestive system Oesophageal atresia without fistula 1 8 9 Oesophageal atresia with fistula 10 127 137 Small intestine atresia/stenosis 9 85 94 Large intestine atresia/stenosis 1 93 94 Urinary system 96 763 859 Bilateral renal agenesis 35 - 35 Cystic kidney disease 35 238 273 Musculoskeletal system 141 835 976 Limb reduction defects 2 265 267 Diaphragmatic hernia 76 88 164 Exomphalos 8 54 62 Gastroschisis 13 170 183 Chromosomal 210 1,232 1,442 Down’s syndrome 75 565 640 Trisomy 13 28 - 28 Trisomy 18 58 2 60

NOTE: 1. Total number of cases with the selected congenital anomaly as the primary postnatal diagnosis.

54

Ongoing research Environment and health Congenital anomalies and air pollution; the CAAP study Funded by the Specialist Registrar in Public Health Medicine Training Scheme This study is investigating whether maternal exposure to air pollutants is associated with an increased risk of congenital anomalies in a cohort of infants and fetuses delivered in the Northern Region during 1985-90. To date, only one study has examined the risk of birth defects in relation to ambient air pollution.13 Ritz and colleagues reported an increase in the risk of cardiac defects with carbon monoxide (CO) exposure; there were no relationships with other air pollutants. This study was limited to only a few birth defect types and the authors called for further research in different settings to verify these findings. A study of the geographical variation in the overall rates of congenital abnormalities and the rates of specific abnormalities Funded by the Departments of Health/ Environment, Trade and Regions/ Environment Agency The geographical variation in the distribution of congenital anomalies is being studied in an ongoing multi-centre UK collaborative project involving five congenital anomaly registers (NorCAS, Glasgow, North Thames West, Wessex and Oxford). The project aims to understand the variation in risk of congenital anomalies in space and time, and will provide important clues to the role of environmental and other exposures in the aetiology of these conditions. Determinants of health Recreational drug use: a risk factor for gastroschisis? Funded by the NHS Executive (Trent, West Midlands, Northern & Yorkshire) Recent studies have demonstrated a 2-3 fold rise in the birth prevalence of gastroschisis without a corresponding increase in the prevalence of exomphalos. Current aetiological hypotheses suggest that this increase may result from maternal exposures, specifically, a link between recreational drug use and gastroschisis has been postulated. This case control study is measuring any excess risk of gastroschisis associated with recreational drug use. Other A feasibility study of the construction of a register of cryptorchidism and hypospadias for the North of England Funded by the Birth Defects Foundation Currently, certain congenital anomalies of the male reproductive system, in particular cryptorchidism and isolated hypospadias, are not registered by NorCAS. There is evidence of an increasing incidence of both these anomalies as components of the testicular dysgenesis syndrome, the cause of which is unknown. The aim of this project is to explore the

13 Ritz B, Yu F, Fruin S, Chapa G, Shaw GM, Harris JA. Ambient air pollution and risk of birth defects in Southern California. American Journal of Epidemiology 2002; 155(1): 17-25.

55

feasibility of constructing a retrospective register of cryptorchidism and hypospadias for the North of England, and to establish a framework for prospective notification. Is congenital abnormality a risk factor for childhood cancer? There are several known links between congenital abnormality and childhood cancer, for example Down’s syndrome and neurofibromatosis. Down’s Syndrome carries an increased risk of leukaemia, but appears to provide protection against solid tumours.14 There has been no previous population based investigation in the UK that links all incident cancer with all previously identified congenital abnormality. The project is a record-linkage geographical cohort study, from 1985-2001, using two databases held within the Northern Region: NorCAS and the Northern Region Young Persons Malignant Disease Registry (NRYPMDR). Publications and presentations based on the NorCAS data The following publications and presentations have occurred since the last annual report. A full list of publications involving NorCAS data is available from the RMSO. Publications 1. CRESSWELL PA, SCOTT JES, PATTENDEN S, VRIJHEID M. Risk of congenital anomalies

near the Byker waste combustion plant. Journal of Public Health Medicine 2003;25:237-42.

2. WREN C, BIRRELL G, HAWTHORNE G. Cardiovascular malformations in infants of diabetic mothers. Heart 2003;89:1217-20.

3. ROBSON SC, WEBSTER S, SMITH M, MCCORMACK K, EMBLETON N. Outcome of mild/moderate fetal cerebral ventriculomegaly. Journal of Obstetrics & Gynaecology 2003; 23 (Suppl 1): S22.

4. LOWRY R, STEEN N, RANKIN J. Water fluoridation, stillbirths and congenital abnormalities. Journal of Epidemiology & Community Health 2003;57:499-500.

5. BELL R, RANKIN J, DONALDSON LJ. Down’s syndrome: occurrence and outcome in the north of England, 1985-99. Paediatric & Perinatal Epidemiology 2003;17:33-39.

6. SCOTT, JES. Fetal, perinatal and infant death with congenital renal anomaly. Archives of Disease in Childhood 2002;87:114-17.

7. VRIJHEID M, DOLK H, ARMSTRONG et al, and the EUROHAZCON GROUP. Hazard potential rating of hazardous waste landfill sites and risk of congenital anomalies. Occupational & Environmental Medicine 2002;59:768-76.

Presentations 1. RANKIN J, LYNCH SA. The Northern Congenital Abnormality Survey: an 18 year survey

of congenital anomalies in the Northern Region. Neural Tube Defects Symposium, South Carolina, USA, Sept. 2003.

14 Hasle H, Clemmensen IG, Mikkelsen M. Risks of leukaemia and solid tumours in individuals with Down's syndrome. Lancet 2000;355:165-196.

56

2. RANKIN J. Congenital anomalies in pregnancies complicated by diabetes: a prospective study. 7th Annual British Isles Network of Congenital Anomaly Registers conference, Dublin, Sept. 2003.

3. BOYD PA, ABRAMSKY L, ARMSTRONG B, BOTTING B, PATTENDEN S, RANKIN J, et al. Ascertainment of congenital anomalies; a comparison between the National Congenital Anomaly Survey and four local registers in England. 7th Annual British Isles Network of Congenital Anomaly Registers conference, Dublin, Sept. 2003.

4. RANKIN J, WRIGHT C, LIND T. Testing times for perinatal autopsy: Parents views and experience of the post mortem examination. 6th Annual ONS Workshop on Congenital Anomaly Registers, Oxford, Oct. 2002.

5. RANKIN J, VRIJHEID M, DOLK H, ABRAMSKY L, ARMSTRONG A, BOTTING B, et al. Geographical variation in the rates of congenital anomalies. 6th Annual ONS Workshop on Congenital Anomaly Registers, Oxford, Oct. 2002.

57

11. NORTH OF ENGLAND COLLABORATIVE CEREBRAL PALSY SURVEY (NECCPS) Cerebral palsy is the commonest cause of long-term physical disability in children. The NECCPS began in 1994 as a prospective cerebral palsy survey across all districts in the former Northern Regional Health Authority. Before this time, a smaller survey had operated in the Tyneside area from 1960 births. NECCPS is collaboration between paediatricians across the region (each district has a convenor) who use the survey for service planning, audit and research. For some years, NECCPS has been housed at the RMSO and for the last two years has been formally under the umbrella of the RMSO. The survey holds data on 780 children born between 1960 and 1990 in the Northumberland, Newcastle and North Tyneside districts. As of September 2002, data on a further 850 children from the former Northern Region are held for 1991 births onwards. There is a wealth of information on each child including type of cerebral palsy, birth weight, gestation, current and birth postcodes. Uniquely, data are also held from the Lifestyle Assessment Questionnaire – an instrument specifically designed for children with cerebral palsy which measure the impact of disability on the child and family. More information is available in successive annual reports available from the RMSO office; the most recent report in 2002 was specifically aimed at parents of children with cerebral palsy. NECCPS has close links with other UK and European cerebral palsy registers. Research publications have covered trends in prevalence by birth weight and gestation, life expectancy, development of the Lifestyle Assessment Questionnaire, qualitative work with families on what they want from a cerebral palsy register, and analysis of how participation (formerly called handicap) varies with district even after severity of impairment has been controlled for. Tables 1 and 2 show the most recent data on rates of cerebral palsy in children born to resident mothers.

58

Table 1: Registrations (numbers) by former health “districts” Collaborating Area

Registrations of Cerebral Palsy by year of birth

Not complete 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000Northumberland 9 13 4 7 7 11 4 3 4 3

Newcastle 10 9 12 5 6 8 10 4 1North Tyneside 10 10 2 2 3 4 3 5 3 1Newcastle & North Tyneside

20

19 14 7 9 12 13

9

3 2

Gateshead 9 8 4 5 2 6 8 2 5 6South Tyneside 4 4 9 7 6 3 5 0 1 0Gateshead & South Tyneside

13

12 13 12 8 9 13

2

6 6

Sunderland 3 13 6 15 6 6 7 2 1 1

North Tees 7 6 8 8 10 7 5 11 6 1South Tees 14 13 14 8 15 14 7 7 7 3Hartlepool 2 2 6 9 3 2 6 7 2 2Tees 23 21 28 25 28 23 18 25 15 6

North West Durham

4 0 2 0 3 6 4 2 4 1

Durham 4 4 6 4 2 2 5 3 1 0South West Durham

8 12 6 4 5 7 6 4 2 2

Darlington 3 3 7 4 1 5 5 1 1 2County Durham 19 19 21 12 11 20 20 10 8 5

West Cumbria 4 2 2 2 3 5 6 8 1 3East Cumbria 6 1 4 7 3 7 5 2 4 2North Cumbria 10 3 6 9 6 12 11 10 5 5

North of England Excluding South Cumbria

97

100 92 87 75 93 86

61

42 28

59

Table 2: Registration rates by former health “districts” Collaborating Three year rolling registration Area rate per 1,000 live births 1991-93 1992-94 1993-95 1994-96 1995-97Northumberland 2.43 2.28 1.75 2.50 2.26

Newcastle 2.87 2.47 2.23 1.89 2.45North Tyneside 3.05 2.03 1.04 1.37 1.53Newcastle & North Tyneside 2.94 2.30 1.76 1.69 2.08

Gateshead 2.75 2.30 1.52 1.84 2.29South Tyneside 2.81 3.43 3.88 2.92 2.60Gateshead & South Tyneside 2.77 2.80 2.56 2.31 2.43

Sunderland 1.83 2.98 2.49 2.56 1.85

North Tees 2.80 3.08 3.80 3.78 3.40South Tees 3.30 2.89 3.17 3.28 3.31Hartlepool 2.57 4.49 4.77 3.86 3.16Tees 3.02 3.21 3.63 3.53 3.31

North West Durham 1.85 0.64 1.64 3.09 4.49Durham 1.54 1.60 1.44 0.98 1.11South West Durham 4.36 3.84 2.75 3.00 3.65Darlington 2.68 2.98 2.61 2.21 2.34County Durham 2.55 2.33 2.06 2.06 2.47

West Cumbria 1.52 1.25 1.64 2.25 2.85East Cumbria 1.68 1.84 2.14 2.75 2.71North Cumbria 1.61 1.59 1.94 2.54 2.78

North of England (excludes South Cumbria) 2.55 2.55 2.41 2.48 2.52

60

Publications involving NECCPS data in last two years 1. DRUMMOND PM, COLVER AF. Analysis by gestational age of cerebral palsy in singleton

births in northeast England 1970-1994. Paediatric and Perinatal epidemiology. 2002:16:172-180

2. GLINIANAIA SV, PHAROAH POD, WRIGHT C et al. Fetal or infant death in twin pregnancy: neuro-developmental consequence for the survivor. Archives of Disease in Childhood, Fetal and Neonatal Edition 2002:86:F9-F15

3. MACKIE PC, JESSEN EC, JARVIS SN. Creating a measure of impact of childhood disability: statistical methodology. Public Health 2002:116:95-101

4. 7 authors from the 14 participating centres. Surveillance of cerebral palsy in Europe. Prevalence and characteristics of cerebral palsy in Europe. Developmental Medicine and Child Neurology 2002:44:633-640

5. JESSEN EC, COLVER AF, MACKIE PC, JARVIS SN. Development and validation of a tool to measure the impact of childhood disabilities on the lives of children and their families. Child: care, health and development. 2003:29:21-34

6. COLVER AF, SETHU T. The term diplegia should be abandoned. Archives of Disease in Childhood 2003:88:286-290

7. Annual Report 2002. Designed for parents and lay readers. Available from the RMSO

8. COLVER AF. The benefits of a population register of cerebral palsy. Indian Paediatrics. 2003:40:639-644

9. JARVIS S, GLINIANAIA S, TORRIOLI M, PLATT M, MICELI M, JOUK P, JOHNSON A, HUTTON J, HEMMING K, HAGBERG G, DOLK H, CHALMERS J, on behalf of the Surveillance of Cerebral Palsy in Europe (SCPE) collaboration of European Cerebral Palsy Registers. Cerebral palsy and intrauterine growth in single births: European collaborative study. Lancet 2003: 362:1106 1112

10. COLLIGAN J. MILLER J, COLVER AF. A qualitative study, using focused interviews, of the information needs of families whose children’s names are on a cerebral palsy register. In press Child: care, health and development.

11. HAMMAL D, JARVIS S, COLVER AF. Is the participation of children with cerebral palsy influenced by where they live? – In press Developmental Medicine and Child Neurology.

12. MIHAYLOV SI, JARVIS S, COLVER AF, BERESFORD B. How might the environmental factors which influence the participation of children with cerebral palsy be identified and described? – In press Developmental Medicine and Child Neurology.

61

12. REPORT FROM RMSO ADVISORY GROUP This group was formed in March 2003 with the following terms of reference: • The purposes of the Advisory Group are:

a. To explore, in relation to the linked surveys, the: • Ethical framework; • Legal framework; • Provision of information to those who may be registered, the wider public

and professionals; • Development of public involvement; • Approach to seeking consent.

b. To develop an explicit ethical framework for the surveys in the light of existing

national guidance and future societal change.

c. To establish principles for public information and involvement in the seeking of consent.

d. To define the tasks in relation to c above.

e. To monitor progress against the completion of these tasks.

f. To challenge the Director, Clinical Director and Research Director to work within the existing framework.

• Members of the group commit to meeting on a quarterly basis. Additional members to

be appointed at the group’s discretion.

• The Chair will be a non-clinical member of the group and elected by the group. The group was formed as a result of growing concern among researchers that they were under pressure to seek consent to retain data where the very process of seeking that consent could cause distress. Information technology has enormously increased the quantity of data which can be stored: this has raised concern for members of the public who may feel that they no longer control the information retained about them. Researchers fear that data that may be useful in the future could be lost irrevocably. At a personal level they can see the fruits of years of hard work under threat. The Advisory Group hopes to be a forum in which some of these conflicting interests can be discussed in a transparent way and where solutions can be forged. We have had three meetings, and are still learning about the procedures which have been adopted by different components of the RMSO while trying to keep abreast of national developments. Bryan Vernon Chair

62

APPENDIX (I) RMSO STAFF AND CONTACT DETAILS RMSO Staff and contact details: Dr Tricia Cresswell Director tricia.cresswell@durhamclspct.nhs.uk Dr Martin Ward Platt Clinical Director m.p.ward-platt@ncl.ac.uk Marjorie Renwick CEMACH Regional

Manager/ RMSO Operational Manager

marjorie.renwick@cemach.org.uk

Mary Bythell Data Manager: NorCAS/ Cerebral Palsy

Mary.Bythell@newcastle.ac.uk

Helen Bell Administrative Assistant Helen.Bell@newcastle.ac.uk

63

APPENDIX (II) RMSO ADVISORY GROUP MEMBERSHIP RMSO Advisory Group membership (current) Dr Joan Arvold Programme Director Dr Allan Colver Consultant Paediatrician Dr Tricia Cresswell Director RMSO/Director of Public Health Dr Elizabeth Dillon Consultant Radiologist Prof Erica Haimes Director of PEALS Unit, University of Newcastle Dr Sally Lynch Consultant Clinical Geneticist Ms Kath Mannion LSA Midwifery Officer Mrs Joan Oliver Neonatal Nurse Practitioner Prof Louise Parker Paediatric Epidemiologist Dr Judith Rankin Senior Research Associate Dr Sam Richmond Consultant Paediatrician Mrs Marjorie Renwick Regional CEMACH Manager Dr Anne Ryall Consultant Obstetrician Rev Bryan Vernon Lecturer in Medical ethics/Chair Dr Martin Ward Platt Clinical Director RMSO/Consultant Paediatrician

64

APPENDIX (III) MEMBERSHIP OF STEERING GROUPS Perinatal Mortality Survey (PMS/CEMACH) (current) Dr Allan Colver Consultant Paediatrician Dr Tricia Cresswell Director RMSO/Director of Public Health Mr David Evans Consultant Obstetrician Dr Alan Fenton Consultant Neonatologist Dr Bill Lamb Consultant Paediatrician Ms Kath Mannion LSA Midwifery Officer Dr Sheila MacPhail Consultant Obstetrician Mr Paul Moran Consultant in Fetal Medicine Mr Willie Reid Consultant Obstetrician/ Chair Mrs Marjorie Renwick Regional CEMACH Manager Dr Anne Ryall Consultant Obstetrician Dr Chris Wright Consultant Perinatal Pathologist Dr Jonathan Wyllie Consultant Neonatologist Dr Gavin Young General Practitioner Northern Congenital Abnormality Survey (NorCAS) (current) Mr John Atkins Retired Consultant Obstetrician Prof John Burn Clinical Geneticist Mrs Mary Bythell Data Manager, RMSO Dr Helen Cameron Consultant Obstetrician Dr Liz Dillon Consultant Radiologist Ms Jo Harcombe Regional Antenatal Screening Coordinator Mr Bruce Jaffray Consultant Paediatric Surgeon Dr Bill Kirkup Regional Director of Public Health/Chair Dr Heather Lambert Consultant Paediatric Nephrologist Dr Ruth Lawley Consultant Obstetrician Dr Judith Rankin Senior Research Associate Dr Sam Richmond Consultant Paediatrician Prof Steve Robson Consultant in Fetal Medicine Mrs Marjorie Renwick Operational Manager RMSO Mr John Scott Retired Consultant Paediatric Surgeon Dr Martin Ward Platt Clinical Director RMSO/Consultant Neonatologist Dr John Wolstenholme Cytogeneticist Dr Chris Wren Consultant Paediatric Cardiologist Dr Chris Wright Consultant Perinatal Pathologist Multiple Birth Steering Group (current) Dr Svetlana Glinianaia Research Associate Dr Judith Rankin Senior Research Associate Mrs Marjorie Renwick Operational Manager RMSO Dr Anne Ryall Consultant Obstetrician Dr Steve Sturgiss Consultant Fetal Medicine Dr Unni Wariyar Consultant Paediatrician Dr Chris Wright Consultant Neonatal Pathologist/Chair

65

Diabetic Steering Group (current) Dr Tricia Cresswell Director RMSO/Director of Public Health Prof John Davison Consultant Obstetrician/Chair Mrs Lisa Doughty Diabetic Specialist Nurse Dr Gillian Hawthorne Consultant Diabetologist Dr Nick Lewis-Barnard Consultant Diabetologist Dr Judith Rankin Senior Research Associate Mrs Marjorie Renwick Operational Manager RMSO Dr Martin Ward Platt Clinical Director RMSO/Consultant Neonatologist Mrs Val Williamson Diabetic Midwife Mr Rob Wood Consultant Obstetrician NECCPS Steering group Dr K N Agrawal Consultant Paediatrician Dr N Brewster Consultant Paediatrician M Bythell RMSO Data Manager Dr R Carpenter Consultant Paediatrician Dr A Colver Consultant Paediatrician/Chair Dr N Cookey Consultant Paediatrician Dr J Dobson Consultant Paediatrician Dr M Gibson Consultant Paediatrician Dr S Jarvis Consultant Paediatrician/Epidemiologist Dr C Jessen Consultant Paediatrician Dr A Johnston Consultant Paediatrician Dr E Lee Consultant Paediatrician Dr R J Menzies Consultant Paediatrician Dr P Morrell Consultant Paediatrician S Norton Children’s Physiotherapist Dr S K Pandy Consultant Paediatrician Dr A Paynter Consultant Paediatrician Dr S H Precious Consultant Paediatrician Dr K Whiting Consultant Paediatrician V Wood Children’s Physiotherapist

66

APPENDIX (IV) STANDARDS OF CARE FOR WOMEN WITH PRE PREGNANCY DIABETES AND THEIR BABIES Revised October 2003 PROCESS OF CARE 1. In each maternity unit, a consultant obstetrician and consultant physician should take

responsibility for organising care for pregnant women with diabetes. There should be a lead midwife for diabetes and a link diabetes specialist nurse to maternity services.

2. The ante natal care of women with diabetes should wherever possible be in a multidisciplinary clinic with locally agreed protocols.

3. Where women require hospital admission (for problems related to the pregnancy) before 24 weeks gestation, there should be input from a diabetologist and an obstetrician or a gynaecologist as appropriate. The ward of admission would be dependent on local agreement. After 24 weeks women should be admitted to antenatal wards under the shared care of an obstetrician and a diabetologist.

PRE-PREGNANCY 4. Every woman of child bearing age should be individually assessed for their pre-

pregnancy risk and their contraceptive status annually, aiming for optimum glycaemic control peri-conception.

5. Each unit should agree a policy with local general practitioners for pre-pregnancy review and fast referral to specialist services for women contemplating pregnancy. It is recommended that glycated haemoglobin is recorded three monthly as a minimum in this group, aiming for optimum glycaemic control peri-conception. Target glycated haemoglobin should be less than 7%.

6. When pregnancy is contemplated and as soon as contraception is ceased, women should be encouraged to take folic acid (5mg daily) for at least three months pre conception, continued up to at least the thirteenth week of pregnancy.

PREGNANCY CARE 7. Blood glucose levels should be monitored frequently and insulin adjusted (including

the frequency of injections) to achieve a near normal glycated haemoglobin and pre/post prandial blood glucose levels of:

Before meals capillary whole blood glucose less than 5.6 mmol/l capillary plasma glucose 4.4-6.1 mmol/l After meals capillary whole blood glucose less than 7.8 mmol/l capillary plasma glucose less than 8.6 mmol/l

The glycated haemoglobin should be recorded monthly and the target should be as low as consistent with safety. This will usually be less than 7%. For women with poor glucose control a clear action plan should be documented.

continues over page

67

8. The retina of all women should be examined by a trained observer using dilation of the pupils at booking and at 28 weeks gestation as a minimum and more frequently if hypertension or retinopathy are detected. There is some evidence for also assessing visual acuity at the same visits.

9. All women should have an ultrasound scan in the first trimester and both a fetal anomaly scan and a detailed cardiac scan between 18 and 22 weeks gestation.

10. All women should have an assessment of fetal wellbeing by ultrasound at 26 and 30 weeks.

11. All women should have a bio-physical profile at a minimum of weekly from 34 weeks and if not available a CTG performed twice weekly.

12. Each unit should have an induction policy in keeping with national guidance. Induction should be individually determined but would normally be at about 38 weeks.

13. Breast feeding should be strongly encouraged in women with diabetes. INTRAPARTUM CARE 14. Intravenous glucose and insulin should be administered during labour and delivery to

a locally agreed protocol.

15. As this is a high risk pregnancy: • Continuous electronic fetal heart rate monitoring should be recommended in

labour. • Labour and delivery should take place in a consultant–led unit with staff trained

in neonatal resuscitation available on a 24-hour basis. Protocols must be in place and staff trained in the management of shoulder dystocia.

DISCHARGE ARRANGEMENTS 16. Discharge arrangements should include:

• Clear reference to woman’s diabetes and glycaemic control in pregnancy and possible impact on baby in discharge letters.

• Follow up appointment at joint clinic or diabetes clinic according to local agreement.

• Clear advice about contraception and the need for optimum glycaemic control before the next pregnancy.

CARE OF BABIES 17. All babies of mothers with diabetes should have a true laboratory (not reagent strip)

blood glucose and haematocrit measured after 3 postnatal hours and before 12 postnatal hours, preferably just before the second feed.

18. Admission to Special Care should be reserved for babies with a clear need (within local guidelines) other than the presence of diabetes in the mother.

19. Particular attention should be made to establishment of feeding. If a mother and baby are discharged before feeding is fully established, additional input must be given by the community midwife. Significant intrauterine growth retardation may be masked by ‘normal’ birthweight.

68

69