Hidden inequalities: what the data doesn’t show
Throughout this website we have called for improvements in measuring and responding to inequalities in maternal health care and outcomes. The good news is that ethnic and geographic equality are increasingly being recognized as serious policy concerns – and this is in response to good quality data.
However, there remain groups of vulnerable women whose needs remain unheard, and who face inequalities which are not captured through routine or survey data. These groups are often hidden, so that the inequalities are not acknowledged or fully known.
We must now extend and expand our concepts of inequality to include those marginalized groups that currently are ignored.
Refugees, asylum seekers and undocumented migrants
Safe, good quality, respectful maternity care is a right – enshrined in the Charter for Respectful Maternal and Newborn Care. Yet in the UK, as in many other countries, far too many women who are refugees, seeking asylum or undocumented, face enormous challenges in accessing this kind of care. Multiple barriers are in the way; these range from structural, organizational barriers (such as the charging policies in the NHS) to social, personal and cultural barriers (which might include language barriers and the shortage of translators for maternity care).
Given that more than half of all refugees and asylum seekers in the UK are women and children, the inequalities they face in accessing quality maternal health care are not only a risk to health but a systemic breach of human rights.
The results are known; a wealth of data in the UK, Europe and North America points to worse perinatal outcomes for refugee and asylum-seeking women. This is especially evident in maternal mental health, maternal mortality, preterm birth and congenital anomalies (1).
By their very nature, undocumented migrants (defined as people living in the UK who the government does not think have the right to remain) are not visible in official records. As a result, we don’t know how many undocumented migrants each year become pregnant or give birth.
However, according to ‘They don’t count us as anything’, the 2022 report from Doctors of the World (DOTW), there is mounting evidence that inequalities in access to antenatal care (ANC) for undocumented migrants is leading to poorer outcomes for their pregnancies and for the health of their children (2).
According to DOTW, ‘for the first time we have information on time to first ANC appointment, uptake of prenatal vitamins, outcomes after the delivery of the baby including week of delivery, delivery type, mental health of the mother and access to routine neonatal care and immunisations for the child.’
Over 80% of the women in the report had their first antenatal care appointment after the recommended first 10 weeks of pregnancy. Half of the women did not have any antenatal care until after 16 weeks of pregnancy, compared with the national average of ten percent. However, over 60% of the women who did not receive antenatal care until after 16 weeks were from Sub-Saharan Africa, further highlighting the ethnic and racial inequalities in accessing healthcare.
Over a third of the women reported mental health issues – unsurprising given the stress on pregnant women facing the costs imposed by NHS charging regulations. A third of women reported receiving a bill - ranging from £296 to £14,000 with half of bills over £7000.
"The NHS charging is something that affects migrant pregnant women a lot. Think about it; you have given birth to a child and they've given you a bill of £4000. I just went into depression. It got me really scared… It is devastating for a woman to be feeling that way and thinking that I put myself into trouble and I should have not gotten pregnant. Charging migrant women is simply barbaric." DOTW National Health Advisor
DOTW are calling for the immediate suspension of NHS charging regulations for maternity care: ‘A growing body of evidence suggests that the NHS charging policy erodes migrant and Black and Minority Ethnic communities' trust in the NHS and undermines access to all health services." Removing user charges would not only enable access to care, it would also allow us to better record health care utilisation and outcomes of this vulnerable group, and ensure appropriate responses.
Women in prison
It is not known how many pregnant women are detained each year as this information is not publicly recorded. However, it is estimated that there are approximately 600 pregnancies in prisons in England each year. (3) Women in prison also routinely face barriers to seeking care, with many missing vital appointments with midwives or obstetricians. Many have a background of multiple disadvantages, including domestic violence, mental health problems and addiction.
In response, The Royal College of Obstetricians and Gynaecologists has released a position statement calling for improved access to care, including Mother and Baby Units, and improved links and communication between health services and prisons. It also advocates for data to be collected and published on the number of pregnant women in prisons, including the number of births, miscarriages, stillbirths and terminations, as well as custodial sentences for pregnant women to only be used only in exceptional circumstances. (4)
Women with disabilities
Again, there is very little up-to-date evidence about the experience of women with disabilities who give birth and the care they receive. However, an English survey in 2015 found that women with disability have poorer experiences when receiving care. (5) These women reported not always being spoken to so that they could understand; not being listened to; not always sufficiently involved in decisions about their care; not treated with respect – and their concerns not taken seriously.
Women with disabilities also had less confidence and trust in their health care providers. More data on the needs and experiences of women with disabilities, and how this differs across disability type, is needed to understand inequities, and to develop appropriate responses, as well as greater disability training for health care workers.
LGBTQ+ people
Five percent of people who responded to the 2018 Survey of women’s experiences of maternity care report conducted by the Quality Care Commission did not identify as heterosexual. Historically this group has experienced barriers in accessing health care, and maternity is not exception. While there is a lack of data on the experience and outcomes of LBGTQ maternal health service users, there is evidence that care does not always meet their specific needs and systems are essentially heteronormative (6). Indeed, there is some concerning evidence from the US that lesbian and bisexual mothers may actually experience higher rates of miscarriage and stillbirth (7), highlighting the need for sensitive and responsive services and better data to inform its development.
Our need for more and better data
We must do better – but we need better, more accessible data to understand inequalities and ensure that no group’s needs remain hidden. Because if you’re not counted, you don’t count
Reference links
rcog-maternity-care-and-the-prison-system-position-statement-sept-2021.pdf
Maternity Care for LGBTQ+ People - How can we do better? | All4Maternity
Sexual Orientation Disparities in Pregnancy and Infant Outcomes - PMC (nih.gov)
