Understanding delayed access to antenatal care: a qualitative study Rosalind Haddrill

List of abbreviations and acronyms used in the thesis

BME Black and Minority Ethnic

CCG Clinical Commissioning Group

CEMD Confidential Enquiry into Maternal Deaths

CIS Critical Interpretive Synthesis

CMACE Centre for Maternal and Child Enquiry

DCLG Department for Communities and Local Government

DHSS Department of Health and Social Security

DoH Department of Health

ESRC Economic and Social Research Council

FNP Family Nurse Partnership

GMC General Medical Council

GP General Practitioner

HES Hospital Episode Statistics

HSCIC Health and Social Care Information Centre

MRC Medical Research Council

NCCWCH National Collaborating Centre for Women’s and Children’s Health

NCT National Childbirth Trust

NPEU National Perinatal Epidemiology Unit

NHS National Health Service

NICE National Institute for Health and Care Excellence

NIHR National Institute for Health Research

NSF National Service Framework

NSPCC National Society for the Prevention of Cruelty to Children

ONS Office for National Statistics

PNCC Prenatal Care Co-ordination

PCT Primary Care Trust

PSA Public Service Agreement

RCM Royal College of Midwives

RCT Randomised controlled trial

RCOG Royal College of Obstetricians and Gynaecologists

UK United Kingdom

USA/US United States of America

WHO World Health Organisation

WMA World Medical Association

Chapter 1: Introduction to late booking for antenatal care
1.1 The background to late booking

1.1.1 Midwifery and ‘booking’ for antenatal care

Antenatal care, a systematic programme of health screening, health education and social support for pregnant women, is a cornerstone of contemporary midwifery practice in the United Kingdom (UK). It has grown and developed alongside the midwifery profession itself and remains the most significant activity for many midwives, at a time when postnatal care has, in some areas, been largely delegated to other practitioners. Contemporary antenatal care originates from models developed in Europe in the early decades of the 20^th century, arising from a newly emerging belief in the possibility of the avoidance of maternal, fetal and infant death (Oakley 1982). Antenatal care has been widely offered to pregnant women in the UK since the late 1920s and has formed a template for maternity care worldwide (National Collaborating Centre for Women’s and Children’s Health (NCCWCH) 2008).
Regular attendance for antenatal care is an accepted part of healthcare during pregnancy for the majority of women. For some women it will be their first encounter with maternity services, and for many pregnancy will be their first personal experience of hospital-based services and health screening. From a life course perspective, women’s engagement antenatally has the potential to influence both long-term health and wellbeing and their future use of health services, for themselves and their families (National Health Service (NHS) Commissioning Board 2012, Royal College of Obstetrics and Gynaecology (RCOG) 2011).
The initial antenatal or ‘booking’ appointment is one of the most important parts of a woman’s pregnancy care: “the importance of the antenatal booking interview cannot be over-emphasised” (Centre for Maternal and Child Enquiry (CMACE) 2011: 152). The meeting, usually between a midwife and the woman, provides an opportunity to discuss, plan and implement care for the duration of the pregnancy, the birth and postnatal period. Midwives play a key role: it is an essential opportunity for midwives to develop a positive relationship, a partnership with women, and to evaluate the potential physical, psychological and social effects of pregnancy on the woman and her family. They can offer referral for specialist and multidisciplinary input when there are risk factors that could impact on the pregnancy (or vice versa), and offer support at a time when a woman may feel overwhelmed by the changes occurring in her body and the prospect of pregnancy, birth and motherhood. Counselling and screening for infectious diseases and hereditary conditions, chromosomal abnormalities and fetal anomalies, form a significant part of antenatal booking. It is also an important contact point for health and lifestyle advice during the critical early stages of fetal development, for example advice about smoking cessation and diet (Viccars 2009, Bharj and Henshaw 2011, CMACE 2011). In Sheffield this booking appointment is in two parts, one at the woman’s family doctor (GP), local children’s centre or in her home with her community midwife, the other at the maternity hospital (The Jessop Wing).
1.1.2 The pattern of antenatal care and recommendations for early booking

Despite antenatal care’s longevity, it follows a pattern that some have argued has evolved with little scientific basis (Thorley, Rouse and Campbell 1997, NCCWCH 2008). Dowswell et al (2010), in their Cochrane systematic review, acknowledge that since the inception of modern antenatal care, few of its common components have been formally evaluated, and there is little reliable evidence of the relative merits, hazards and costs of alternative packages of care. Stephens’ feminist viewpoint (2004) similarly argues that while maternity care has been established, challenged and individualised, there is still no real evidence to show what is an ideal pattern of care. Steer’s frequently cited obstetric perspective (1993) suggests that antenatal care (“a pattern of largely ineffective ritual” p697) is valued as much for the reassurance and social contact it offers pregnant women, as its clinical effectiveness.
There is similarly a lack of consensus about the exact significance of delayed access to antenatal care and limited evidence about exactly when booking should take place (Villar et al 2001, Cresswell et al 2013). However despite this, the World Health Organisation (WHO) and national clinical practice guidelines for antenatal care from, for example, the UK, United States of America (USA) and Australia, highlight the value of early initiation of antenatal care (Kupek et al 2002, WHO 2006, Philippi 2009, Australian Department of Health and Ageing 2012). These are summarised in table 1.1.2. UK reports and guidance recommend that women seek professional healthcare in early pregnancy, to obtain evidence-based information to help them plan their pregnancies and to benefit from antenatal screening and health promotion activities (Bharj and Henshaw 2011). Additionally, repeated Confidential Enquiry into Maternal Deaths (CEMD) reports (Lewis 2007, CMACE 2011, Knight et al 2014) have stressed the importance of early booking.
The current National Institute for Health and Care Excellence (NICE) guidance Antenatal care: routine care for the healthy pregnant woman (Clinical Guideline 62, NCCWCH 2008) aims to offer evidence-based information on best practice for uncomplicated pregnancies. The authors suggest that the ethos of the guideline is that pregnancy is a normal physiological process and that, as such, any interventions offered should have known benefits (as well as be acceptable to pregnant women) (p1). Though it considers in detail the evidence relating to frequency of appointments, there is no such consideration of the optimum time for antenatal booking. Rather this NICE publication and others: Pregnancy and Complex Social Factors (CG110, 2010) and Quality Standard for Antenatal Care (QS22, 2012), and NHS Screening Programme guidelines simply recommend that pregnant women should attend for their booking appointment as early as possible, ideally before ten weeks gestation (NCCWCH 2008, NCCWCH 2010, NHS Sickle Cell and Thalassaemia Screening Programme 2011, NICE 2012).
NICE (CG62, 2008) recommends that as part of this booking for pregnancy, all screening blood tests, excluding screening for gestational diabetes, are offered before ten weeks gestation, and that women should also be offered the most accurate early screening for Downs Syndrome between 11 weeks and 13 weeks and 6 days gestation. An early ultrasound scan should be offered between 10 weeks and 13 weeks and 6 days to determine accurately gestational age and reduce the incidence of unnecessary induction of labour for prolonged pregnancy. A fetal anomaly scan should also be offered between 18 weeks and 20 weeks and 6 days (p12, 15, 20).

Table 1.1.2: Antenatal booking recommendations from different countries

Location	Publication and year	Recommendations regarding initiation of antenatal care
UK	National Collaborating Centre for Women’s and Children’s Health (NCCWCH). NICE Clinical Guideline CG62: Antenatal Care: routine care for the healthy pregnant woman. 2008. RCOG Press, London.	“The booking appointment needs to be earlier in pregnancy (ideally by 10 weeks) than may have traditionally occurred, because of the large volume of information needs in early pregnancy” (p78). This also allows arrangements to be made for tests that are most effective early in the pregnancy (eg gestational age assessment by ultrasound scan and nuchal screening for Down’s syndrome by 13 weeks). Screening for sickle cell diseases and thalassaemias should be offered to all women as early as possible in pregnancy (ideally by 10 weeks).
UK	NCCWCH. NICE Clinical Guideline CG110: Pregnancy and complex social factors: A model for service provision for pregnant women with complex social factors. 2010. RCOG Press, London.	“At first contact with any healthcare professional discuss the need for antenatal care, offer the woman a booking appointment in the first trimester, ideally before 10 weeks if she wishes to continue the pregnancy” (p5). Current policy supports booking by 12 weeks for all women. “The main rationale… is to allow women to participate in antenatal screening programmes for haemoglobinopathies and Down‘s syndrome in a timely fashion, to have their pregnancies accurately dated using ultrasound scan, and to develop a plan of care for the pregnancy which sets out the number of visits required and additional appointments that may need to be made” (p11).
Australia	Australian Department of Health. Clinical Practice Guidelines – Antenatal care - Module I. 2012. Australian Government, Department of Health and Ageing, Canberra.	“Consensus-based recommendation: at the first contact with a woman during pregnancy, make arrangements for the first antenatal visit, which requires a long appointment and should occur within the first 10 weeks” (p 32).
Australia and New Zealand	The Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Standards of maternity care in Australia and New Zealand. 2014. RANZCOG, East Melbourne, Australia.	“Booking should take place in early pregnancy and ideally all pregnant women should have had their first full booking visit and a hand held maternity record completed by 12 weeks of pregnancy” (p20).
USA	McGlynn EA et al. Prenatal care interventions, in The Quality of Health Care Delivered to Adults in the United States, RAND Health working paper. 2006. RAND Corp., Santa Monica, CA.	“The first prenatal visit should occur in the first trimester” (p40).
USA	US Dept for Health and Human Services, Agency for Healthcare Research and Quality. Akkerman D et al. Routine Prenatal Care. 2012. Institute for Clinical Systems Improvement, Bloomington, MN	“Expeditious access to prenatal care: Early confirmation of pregnancy is important because it allows for early intervention to mitigate risk factors. This includes early screening (p10).” Recommended first visit by 6-8 weeks gestation.
Europe	EURO-PERISTAT project. European Perinatal Health Report: the health and care of women and babies in Europe in 2010. 2013.	“In Europe, despite enormous variability in what constitutes basic prenatal care during pregnancy, there is a general consensus that it should begin early... An early first antenatal visit has become the accepted standard for antenatal care” (p87-88) - by the end of the first trimester.
Global (WHO)	World Health Organisation (WHO). Standards for maternal and neonatal care: Provision of effective antenatal care. 2006. WHO, Geneva.	“Evidence suggests that, given the need for early identification of underlying problems to ensure efficacious treatment, the first ANC visit should be as early as possible in pregnancy, preferably in the first trimester” (p4).

The NICE guideline Pregnancy and Complex Social Factors identifies three milestones in terms of access to early pregnancy care: 10, 12⁺⁶ and 20 weeks gestation (NCCWCH 2010: 41). Ten weeks was chosen as this is the target set out in the NICE Antenatal Care clinical guideline (CG62) for early booking. However, the authors acknowledge this is a difficult target to attain, especially for women in vulnerable groups. They have therefore added a second target for early booking, identifying this as one which is well recognised within maternity services and research relating to access to antenatal care: booking by the end of the first trimester of pregnancy (12⁺⁶ weeks). The definition of late booking being at 20 weeks reflects “a widely accepted definition and which is associated with the upper limit for carrying out serum screening for Down‘s syndrome and anomaly screening using ultrasound” (p41), though this is identified as 20 weeks rather than 20⁺⁶. Maternity care commissioners in the UK must now ensure that the number of women booking at these points in pregnancy are recorded.

1.1.3 Why is late booking important?

In the UK and internationally, early booking and access to regular antenatal care are widely accepted as normal and appropriate pregnancy behaviour, beneficial for both mother and baby. The ‘cause and effect’ of poor engagement and poor outcomes is sometimes presented simplistically, for example with statements like “early, quality prenatal care is critical to improving pregnancy outcomes” (Gazmararian et al 1997: 18). Baker and Rajasingam (2012), in their London-based study, suggest correctly that late booking means that women may not have the opportunity to benefit from screening tests, antenatal education and health advice, and that complications and conditions may not be identified until they have started to compromise the health of the mother or fetus. This is turn can have long term health consequences (my emphasis).
The picture is far from simple however. Timely and adequate antenatal care is generally acknowledged to be an effective method of reducing adverse outcomes in some pregnant women and their babies, but there is a lack of strong evidence (Alderliesten et al 2007, Lavender et al 2007). Dowswell et al ‘s (2010) Cochrane systematic review argues that antenatal care is a complex intervention, reflecting the Medical Research Council (MRC) definition of an intervention with several interacting components (MRC 2008). Although it is reasonable to assume that it does confer some health benefits, how it does so may be multifactorial and unclear. Similarly the definitions of ‘timeliness’ and ‘adequacy’ of care are far from clear cut in developed countries. As the NICE guideline for Pregnancy and Complex Social Factors states:

“It is likely that early assessment of pregnancy needs and screening also lead to more appropriate antenatal care, which in turn would result in improved pregnancy outcomes, although there is little evidence to support this in income rich counties.” (NCCWCH 2010: 41-42)
Many studies examining inadequate care do not differentiate between the timing of the initiation of antenatal care and the total amount of antenatal care received. One large UK birth cohort study did make this distinction, but found no relationship between delayed antenatal attendance (after 28 weeks gestation) and adverse pregnancy outcomes (Thomas, Golding and Peters 1991). Research demonstrates that a reduced frequency of antenatal appointments for low risk women has no influence on clinical outcomes, but does have a negative influence on women’s satisfaction with their care. The Cochrane review of reduced versus standard packages of antenatal care for low-risk pregnancy found that perinatal mortality was increased amongst those women randomised to a reduced number of antenatal visits, though the difference was only significant in low- and middle-income countries (Dowswell et al 2010). Gestation at booking was not considered however. There were no clear differences between the groups for the other reported clinical outcomes. However women in all settings were less satisfied with the reduced visits schedule and perceived the gap between visits as too long, and in one of the UK studies women were more worried about their babies and perceived them more negatively (Sikorski et al 1996). Downe et al (2009), in their meta-synthesis of barriers to antenatal care for marginalised women in high-income countries, suggest that these ‘low risk’ women might be expected to maintain a normal pregnancy, regardless of the number of antenatal visits.
However, as Philippi observes, in her US-based literature review of women’s perceptions of access to antenatal care (2009), the picture is complicated by the fact that most women who do not receive early and/or adequate antenatal care are in a demographic category that is associated with increased risk of poor pregnancy outcomes. There is sufficient data from repeated epidemiological studies that socio-economic deprivation is linked to both decreased access to antenatal care and increased maternal and fetal morbidity and mortality. There is less agreement however as to whether late, infrequent or non-attendance at antenatal services in particular is associated with adverse outcomes (Macfarlane and Mugford 2000, Rowe and Garcia 2003, Downe et al 2009).



Arguably these ‘high risk’ women have most to gain from antenatal care. The NICE guideline for Pregnancy and Complex Social Factors suggests that despite a lack of current evidence, “it seems likely that facilitating early booking for these women is even more important than for the general population of pregnant women” (NCCWCH 2010: 11). The US Department of Health and Human Services have previously estimated that up to 80% of women at high risk of having a low birthweight baby could be identified at the initial (booking) appointment (Roberts et al 1998). As a minimum, the potential to address women’s needs is greatly enhanced when antenatal care is utilised early and regularly (Lavender et al 2007). Holistic and bespoke approaches offering social support in addition to the antenatal ‘interventions’ proposed by NICE (NCCWCH 2008) have demonstrated positive outcomes in disadvantaged communities (both in the short and long term) for mothers, babies and families (Oakley, Rajan and Grant 1990, Leamon and Viccars 2007, Hollowell et al 2011). In terms of antenatal screening, inequalities in access to/uptake of screening may potentially disadvantage those most at risk, as these are the women most likely to have or to be carriers for the conditions being screened for, such as hepatitis or thalassaemia. Some researchers have argued that the system is therefore failing some women (Rowe et al 2004).
1.1.3.1 Maternal wellbeing

Numerous UK maternal mortality (CEMD) reports have suggested a link between late booking and maternal mortality, though the figures are complicated by combining initial and further attendance during pregnancy, and differing definitions of late booking. In the most recent report (Knight et al 2014), 9.3% of women who died beyond early pregnancy didn’t receive any antenatal care at all, and 22.5% of women had booked for care after 12 weeks. For a further 9.2% of the women this information was missing. 24.7% of women did not receive the minimum recommended level of antenatal care. In the previous report (CMACE 2011) 13% of the women who died had not booked by 18 weeks of gestation, did not seek care at all or actively concealed their pregnancies. Another 13% were poor antenatal attenders and for another 4% of women this information was missing. This is in contrast with the 4% of mothers found not to have booked with NHS maternity services by 18 weeks of gestation in a study undertaken by the National Perinatal Epidemiology Unit (NPEU) in 2006, covering the same period (Redshaw et al 2007). In preceding triennial CEMD reports, the percentage of women who died following late or no booking and/or poor attendance was 20%, 20% and 17% (Lewis 2007, Lewis 2004, CEMD 2001).
The 2014 CEMD report identifies that whilst direct maternal deaths have halved in the past ten years, maternal deaths from indirect (medical and psychiatric) causes have remained static. Seventy four percent of the women who died in the triennium covered were known to have pre-existing medical complications, whilst 17% were known to have pre-existing mental health problems (Knight et al 2014). Such women could have benefitted from early booking and appropriate referral for specialist care. The reports also continue to highlight that a disproportionate number of the women who die come from the most vulnerable and excluded groups of society: the poorest, often non-white, women living in the most deprived areas. The link between adverse pregnancy outcomes and vulnerability and social exclusion is clear, with the reports demonstrating that those women who need maternity services most use them the least. Vulnerable women with socially complex lives who died were far less likely to seek antenatal care early in pregnancy or to stay in regular contact with maternity services. Some of the women who died were let down because, although the initial referral was timely, they did not receive a first maternity service appointment until they were around twenty weeks gestation; “This delay denied them the opportunities that early maternity care provides for mother, baby and family” (Lewis 2007: x).