Trust Mother's Words, Acknowledge Our Feelings: Exploring experiences of maternity care in women from Black, Asian and Minority Ethnic communities and women with a learning disability

In January 2023, Healthwatch Lambeth was commissioned by South East London Local Maternity and Neonatal Services (SEL LMNS) to talk to pregnant/ newly birthed women/birthing people about their experiences of using maternity services. The aim is to use the insight of seldom-asked communities to develop and improve maternity services. A total of 55 pregnant/newly birthed women/birthing people shared their experiences of maternity care through focus groups hosted and facilitated by local partner organisations, through individual interviews with Healthwatch Lambeth staff, and written feedback. Women from Black, Asian and minority ethnic groups, refugees, migrants, and women with a learning disability shared their stories.

The findings showed that women had variable experiences of the maternity care they received throughout the perinatal journey. However, many women described negative experiences. 

Women spoke highly of health professionals who showed sensitivity, listened to them and were responsive to individual needs and circumstances. However, for some women, a lack of person-centred care and at times a near focus on structural aspects of care combined with limited relationship building and trust with care professionals left many women feeling anxious and often processed. 

Not  being trusted and feeling ignored by healthcare professionals in relation to early pregnancy complications or when experiencing pain during labour and birth left many women feeling alone, uncared for and disrespected. 

The provision of information, good communication, positive staff attitudes and continuity of care was key to a positive experience of care. However, many women’s stories highlighted that this was often lacking and resulted in a loss of autonomy and control. This meant that many women felt unable to express their care preferences and often felt conflicted and ‘pressured’ or ‘funnelled’ into decisions about their care. Lack of continuity also meant women were unable to build an ongoing relationship with a health professional. 

Some women felt judged when faced with what they perceived to be differential or lacking care based on factors including their age, ethnicity, citizenship, and accent. They gave specific examples including stories about gestational diabetes screening, pain management during labour and when needing physical and practical support on the postnatal ward.

Care after birth was frequently described as poor. In hospital, women’s requests for physical and practical support were often not met. This left women themselves feeling abandoned and helpless, particularly after traumatic births. Some women witnessed unprofessional interactions between staff on the ward. 

Inconsistent postnatal care after discharge and what was perceived to be an exclusive focus on the wellbeing of the baby also resulted in many women feeling that their physical and emotional needs were not met or acted on in a timely fashion. There were particular issues raised by individual groups/communities of women which also contributed to their perceptions of maternity care. 

Some women from the black community, described cultural practices around the care of a newborn that they felt did not always align with ‘normative advice’. They often felt conflicted and wary of discussing practices with healthcare professionals. 

Spanish and Portuguese-speaking women frequently described language and communication barriers and variable access to interpreting services. Dissonance in relation to care expectations and perceived lack of awareness of health professionals in relation to rights to NHS care also contributed to perceptions of poor care. 

South Asian women shared very traumatic experiences particularly around the time of birth which they often perceived as negligent and resulting in enduring psychological distress. 

For women with a learning disability, the added involvement of social services contributed to poor maternity experiences. Being under the ‘watchful eye’ of health and social care professionals whilst in hospital after birth led to a loss of autonomy and control and feelings of being judged. The involvement of social services also led to delays in discharge.

The report contains ten recommendations to address the issues in the report.