M(ums)power workshops round one: what do mums think could improve maternity care?

At first glance it might seem that a project which seeks to improve antenatal care and the tools it relies on has little to do with a fictional story about the after-effects of a US high school massacre. But just as the M(ums)power team is seeking to understand the full range of pregnant women’s needs and experiences so that we can identify the ‘gaps’ in the way that services are currently delivered, We Need to Talk about Kevin, the award-winning novel by Lionel Shriver which was recently released as a film, is a highly original and perceptive exploration of motherhood and the more challenging aspects of bearing and bringing up children. Told through the words of Eva, the mother of diabolical Kevin who eventually kills his high-school friends in a gruesome killing spree, the story charts her nightmarish journey through pregnancy and beyond as she experiences a mounting sense of dread and anxiety that her child, and her feelings toward him, are abnormal. Action unravels against a backdrop of hauntingly sterile and empty suburban spaces in which Eva seems to be isolated from any kind of friend or family network and unable to communicate with her uncomprehending, delusional husband.

Critics have described the film as ‘cinema’s worst ever case of post-natal depression’, but Eva’s problems begin well before she gives birth to Kevin: she is ambivalent about the conception, experiences a difficult pregnancy and is unsure about and fearful of the life that lies ahead of her. Indeed, the story put me in mind of another well-known horror film, Rosemary’s Baby, in which pregnant Rosemary is afflicted by agonising pains which convince her that there is something amiss with her unborn child.  Quite apart from the film's famously chilling denouement, it is from Rosemary's escalating feeling of helplessness, loneliness and paranoia, and her struggles to distinguish reality from imagination, that the film derives its power and suspense.

What we have here are two narratives which probably owe their popularity at least in part to the fact that they tap into and dramatize feelings and questions which almost every mother and mother-to-be experiences. Is my child normal? Is that pain normal? Should this be happening? Should I be feeling that? Of course, unlike Eva and Rosemary, the majority of women probably have ‘nothing to worry about’, but it would be nice, wouldn’t it, if there was always a trustworthy person that women could contact if they felt worried about something? And what kind of difference would there were more platforms in place to support  Mums or Mums-to-be to connect with other local Mums or Mums-to-be, to share their emotions and experiences? Or imagine a world in which women could access their information and test results online, to double check that everything is in order and feel reassured and in control of the unfamiliar changes that their bodies are undergoing?

The strengths and weaknesses of antenatal care

These might sound like simple ideas, but the two workshops that we ran last week with more than twenty Mums and Mums-to-be who engaged either with University College Hospital or Newham General Hospital for their antenatal care suggested that such developments could make a significant difference to their experience. Both of the workshops were a veritable hotbed of activity, conversations and excitable babies, with every participant volunteering unique, useful and intelligent insights into the strengths and weaknesses of antenatal services. Of course, women had a variety of perspectives and points of view: some had had positive overall experiences of antenatal care, many of them praising the midwives that they saw and the ‘flexibility’ of services. Others were not so fortunate: common complaints were that they would have benefitted from more continuity of care, had a sense that they were wasting professionals’ time by asking ‘stupid questions’, and felt that they were given conflicting information by different health professionals.

Whatever the experience of the women, however, a consistent message emerged from the workshops: there are insufficient support mechanisms in place to help women to deal with the psychological and social effects of pregnancy. Almost all of the participants reported having experienced fear, lack of control, paranoia or loneliness at some point in their pregnancy, particularly first-time Mums – one woman, for example, reported paying for a number of private scans out of a strong need for reassurance that everything was OK, despite being fully aware that she had a low-risk pregnancy. Another young Mum spoke of a particularly traumatic day at a late stage in her pregnancy when she couldn’t feel the baby move, and became convinced that it was in danger. When she phoned the hospital, she was told to wait until the following day before coming in for a check-up, by which time, she believed, ‘it would have been too late.’ The woman was at that time staying in a homeless shelter, and spoke of still having nightmares about this incident: ‘It was a very low time, a very lonely time. I felt I had no one to turn to.’

These are individual cases, but the workshops also highlighted systemic ‘fault lines’ which caused numerous women to experience heightened stress and worry. A commonly cited issue was the fact that women often do not hear the outcomes of their test results unless they are abnormal, meaning that they must wait in an uncertain and anxiety-ridden no man’s land for the phone call that they may, but hopefully won’t, receive. Booking appointments was also felt by many women to be a confusing and difficult process, while the need to repeat sensitive information to different health professionals along the journey was frustrating, and raised an obvious question: why is it not possible for all professionals to be able to access this information in one secure online place, therefore removing the need for repetition of information, and creating more time for the discussion of other concerns or questions that the women might have?

 We know that there is no safer time in the UK to have a baby: the clinical outcomes of birth are the best that they have ever been, and this is certainly encouraging. As one woman pointed out, ‘when the system works, it works really well.’ But our workshops reflected an acute awareness amongst those who have most recently been on the receiving end of antenatal care that services are much less well adapted to providing holistic support which addresses women’s diverse needs and preferences. This was particularly felt to be the case in the early stages of pregnancy, with one woman expressing the belief that ‘health professionals don’t care about you until you’re past a certain point in your pregnancy – they want to be sure that your baby is going to survive before they start paying attention to you.’ And yet, as I have discussed previously, research has shown that uncertainty and anxiety in early pregnancy can have damaging repercussions not only for the relationship between women and health services (lack of trust and unwillingness to engage), but also in some cases for the health of mother and child – leading to higher rates of caesarean sections or postnatal depression, for example.

The Big Ideas: What would an ideal antenatal service look like?

Our workshops were conducted with a diverse range of women, but it was interesting to find that – whether from an affluent and well-supported background or from a more disadvantaged background – their ‘big ideas’ for improvement were similar, and can roughly be divided into two broad categories:

1. Availability and accessibility of information

Information – whether about the individual woman’s pregnancy or about pregnancy in general - needs to be more readily accessible and easy to navigate via an online system, enabling women to feel more confident about taking control of their own pregnancy and antenatal care while also ensuring more consistent, seamless and efficient interactions with health professionals. Changes might include enabling women to access their own health information and test results.

2. Building local support networks

Developing local, peer-to-peer support networks between women who have experienced or are experiencing pregnancy was another popular idea: such groups might take the form of an online presence via easy-to-use social media sites, but would also be likely to give rise to face-to-face meetings which might simultaneously link in to and boost local services such as children’s centres. One woman thought that children’s centres are an excellent resource that she had only discovered when experiencing difficulties with breastfeeding her baby, and felt that women could derive significant benefit from connecting with such services earlier on.

Our next set of workshops will investigate the weaknesses of antenatal services from the professionals’ point of view and explore the thoughts and experiences of GPs, midwives and obstetricians, as we begin to refine our ideas about how we can improve antenatal services. If you are interested in this project and would like to have your say or keep updated about our progress, please don’t hesitate to get in touch.