Why don’t perinatal women get the support they need?
The three levels of barriers to access according to our community research and policy analysis for NHS England and BLG Mind
Last year, our team was working on a piece of community research to understand women’s perinatal experiences (i.e. the period during pregnancy to 24 months after the birth) and the barriers they face in accessing support for their mental health. Here are some of the headlines on what we found.
The perinatal period is both a highly challenging and a pivotal time for women. As it stands, it is all too easy for women to ‘slip through the cracks’ in the patchy support system and many fail to access support. Understanding and addressing the barriers to accessing support is vital for protecting the welfare and wellbeing of the women who are being let down. What’s more, the perinatal period is a critical window of child development, and every mother should have access to the support they need to be the parent they want to be.
Commissioned by NHS England via BLG Mind, the team at Civil Society Consulting CIC interviewed and surveyed around 500 women in the South East London boroughs of Bromley and Southwark on their perinatal experience. Our interdisciplinary team analysed the findings, teasing apart the psycho-social, socio-cultural and socio-economic barriers to accessing mental health support during the perinatal period to identify policy entry points. The findings and analysis were crafted into a report.
Based on the expertise we gained in the process, BLG Mind asked us to bring together the data from four other boroughs (Bexley, Greenwich, Lambeth, and Lewisham) in a final six-borough-wide report.
The borough-wide report aims to spark action from all corners of the perinatal support system (public, voluntary and even private) and at all levels of decision-making – from the local perinatal teams and health visitors; to the central policymakers at the heart of the national healthcare system; to civil society funders in South East London who want to help tackle the issue of poor perinatal mental health by increasing access to support.
Having spoken with over 400 women across six London boroughs, identified were the following three levels of barriers to accessing perinatal mental health:
Individual-level barriers relate to each individual’s’ attitudes, tendencies, psycho-social traits and behaviours that may prevent them from accessing mental healthcare. For example, this could include feelings of shame towards mental ill-health or low-self esteem.
Social-level barriers can stem from women’s support networks or wider socio-cultural and socio-economic factors. Examples of these barriers include social stigma towards mental health or a lack of empathy from friends and family.
Finally, structural-level barriers refer to gaps and shortfalls in the structures of mental health support, such as distrust in the healthcare system, insensitivity from staff, or experiences of racism or classism.
We categorised barriers and enablers to accessing perinatal mental health within this framework to guide which part of the perinatal support system is responsible for taking action. For example structural-level barriers fall within the responsibility of NHS Trusts and CCGs, whilst social-level barriers can be alleviated by civil society organisations and the social sector.
Notable barriers and enablers
Some of the factors that we’ve identified play a more significant role in affecting women’s access to perinatal mental health, or are more prevalent amongst the interviewees.
At the individual level, birth traumas and other negative perinatal experiences that are left unresolved have a profoundly negative impact on future perinatal experiences. Some women may associate hospitals and hospital staff with their trauma, and find it difficult to return to this setting to access mental healthcare.
Over half of women cited social stigma, often internalised as shame, as a major barrier to accessing support even when they needed it. Some common sources of shame include feeling like a ‘failure or ‘bad mother’ when mental ill-health prevents them from performing the ‘natural’ roles of a mother; others might see poor mental health as a sign of weakness, or do not seek help because they don’t want to be a ‘bother’ for others around them.
These feelings of shame or inadequacy can also coincide with different cultural expectations that act as another layer of barrier. Additionally, expectations might discourage self-care and assign the majority of childcare and housework to the mother, resulting in extra stress during a vulnerable period. Some cultures are also dismissive towards mental health, leaving mothers in a position where the people closest to them are reluctant to acknowledge her mental health concerns.
In spite of this, we also identified some enablers – factors that facilitate women’s access to perinatal mental healthcare. Being a self-starter is a major determinant of whether women secure support or healthcare, particularly as the current system puts the burden on women themselves to find the support they need. Taking the initiative to research and self-teach, and having the confidence to pursue treatment makes self-starters less prone to slipping through the cracks. In fact, of the women who accessed perinatal support services, 45% self referred, without intervention from a medical professional.
On the social level, distrust in the health and social care system is a barrier that disproportionately affects ethnic minority women. Contributors from an ethnic minority background reported this distrust tends to stem from receiving poor services, such as misdiagnoses or a lack of proactivity from healthcare professionals. Some are also reluctant to disclose their mental health problems to health or social care workers, fearing that they will be labelled as unfit to take care of children and put on a ‘watchlist’.
The lack of consistency in perinatal care on a structural level was another major barrier: having a different healthcare professional at each appointment can be anxiety-inducing, and women also find it more difficult to open up or reach out to someone unfamiliar. Women who have to re-explain their situation again at each appointment feel unlistened and uncared for, and in some cases, women have to re-live their traumas. Women who had consistent care reported they were presented with opportunities for early intervention when their mental health began to deteriorate.
While these are some of the major barriers, many others exist. A sweeping observation is that barriers tend to compound on each other and cause women to feel overwhelmed. Mental health deteriorates when many stressors are experienced at the same time or in quick succession, for example if someone is sleep deprived, lonely, and feeling self-doubt.
We also noticed that misdiagnosis of common perinatal health issues, insensitivity of poorly-informed staff and bureaucratic issues (poor organisation, delays, and lack of follow up) consistently alienated women and eroded their optimism for change.
Furthermore, it was strikingly apparent that women of lower socio-economic and socio-cultural status felt less worthy of care, and this dramatically affected their ability to access it.
In almost every story, there were key moments along a mother’s journey where her needs could have been identified and support provided earlier, before the illness escalated. This points to the importance of preventative approaches in addressing perinatal mental health. Efforts should be directed towards connecting women to one another to build support networks. We also advise strengthening the link between the healthcare system and civil society. Referring perinatal women to a social prescription network would empower and enable them to find personal solutions in improving their health and wellbeing.
Looking back on their perinatal experiences, we noticed that mothers are extremely good at pinpointing what went wrong and what would have helped. They also tend to have a lot of policy ideas themselves. Effective perinatal mental health support requires giving women the time and space to talk about their experiences, and making sure that they are heard. This project highlights that co-production and collaboration between perinatal women, public, voluntary, personal and private support systems is paramount to address the three levels of barriers (individual- level barriers, social- level barriers and structural level barriers) that women are posed with to accessing perinatal mental health.
What’s next?
Via BLG Mind, the six borough-wide report is currently being distributed to perinatal teams across SE London as well as policymakers within the NHS trust.
We want to give a special thanks to all the women who have contributed to this research; many of whom have shown incredible bravery for recounting traumatic events and speaking about difficult periods of their life. What we saw was a commitment/ enthusiasm for contributing to something that would improve the lives of others.
This report was commissioned as these teams noticed flailing numbers of women using perinatal mental health support in South East London, and there was a lack of evidence-based research explaining this. This research is the first of its kind in the perinatal field in South East London.
