Mehali Patel is the Research Manager at Sands, a charity working to support bereaved families and save babies’ lives through research and campaigning for safer maternity care. I spoke to Mehali about the persistence of the pregnancy loss taboo and what Sands’ work shows us about systemic inequalities in maternity care.
This interview covers areas that can be difficult to read about, including racism, pregnancy loss and the death of babies. Sands offers trauma-informed support services for anyone affected by pregnancy loss or the death of a baby. To find out more and to get support visit: https://www.sands.org.uk/support-you
Even though pregnancy loss and baby death is common, with 15% of pregnancies ending in miscarriage and 13 babies a day being stillborn or dying as newborns in the UK, it still seems to be taboo. (Source stats)
Why do you think it’s so hard to talk about?
Firstly, although the stats do tell us that pregnancy loss is common, it feels like in the past few years people have started to be more open about their experiences and felt able to share what they’ve been going through. That is already having a positive effect, but it definitely takes time to change people's points of view and their perceptions of these things. It wasn’t so long ago when women were expected to say nothing about losses. They were expected to just ‘get over it’ and move on with their life and keep trying. There was a sense that you shouldn’t tell other people who might get pregnant in case you scare them. We’ve changed as a society to be a bit more open.
We’re starting to recognise the harm caused by silencing stories of pregnancy and baby loss, as well as the trauma of the loss itself. It’s just the start though.
There are some other factors in the mix too. There’s a perception that talking about baby loss might upset a bereaved parent and no one wants to intentionally do that. Of course, it’s really important to be sensitive but often if the timing is right parents are happy to talk about their baby. They might want to share their baby’s name and talk about their experience. But I think there's a lot of worry from other people that they might be upsetting the other person, especially because the parent might be crying, and we can jump to the conclusion that that means we should shut down the conversation and not mention it again.
The fact that pregnancy loss is usually a hidden loss adds to the difficulty. There might not be many people who even knew about the pregnancy, so they won’t know about the loss either. It’s not like when an older person dies and there are shared memories and talking points which can bring people together in their remembering and grieving. It’s much quieter, it’s much more hidden.
Sands has investigated systemic inequalities and how different families experience pregnancy, birth and loss. What did you find?
In December 2023, we published a report called the Listening Project in which we interviewed 56 Black and Asian bereaved parents about their experiences of maternity care. We focused on identifying actions that can be taken to make care safer and where things could have been better to save babies' lives.
There are lots of statistics that highlight the differences experienced by families of different backgrounds. One that really stands out to me is that if the rates of stillbirth and neonatal death were the same for Black and Asian babies as they are for white babies then between 2017 and 2021, 1,704 more babies would have survived. That’s a huge number of lives that could have potentially been saved. The difference is real and it’s something that those families live with every day.
From the families we spoke to, about half of them felt that they were treated differently or worse because of their ethnicity.
Then there was a further group who were unsure about the role that their ethnicity played in their care. Although they couldn’t pinpoint a definite example, they were left with questions about whether their experience was because of racism or discrimination.
Within the report we identified four themes that are really important in the delivery of safe and effective maternity care: being listened to and heard (just over half of all parents described healthcare professionals not listening to them or dismissing their concerns, with some linking this to racism or stereotyping); personalised, joined-up care; communication about safety and risk (getting the information needed about how your ethnicity might affect your pregnancy and the care you are offered, not just being told your ethnicity is a risk factor without any enhanced care); safety and learning (a third of parents interviewed said that a review had taken place after their experience but only half of them were involved in the review. Most of those involved found it a negative experience).
When you miss hearing from bereaved parents, you miss a crucial chance to identify and tackle the effects of harmful stereotypes and discriminatory attitudes. They go unchecked and unnoted and more families suffer as a result.
How far do other factors like income or overall health explain these differences in pregnancy and baby loss?
Even when you control for income there are differences in baby loss rates for different ethnic groups, so we know that systemic discrimination is at work.
There are many different inequalities that overlap and reinforce each other in pregnancy and birth. There are deep socio-economic differences which overlap with ethnic differences due to racism and discrimination in so many areas of society. The area we live in, the quality of our housing, the air we breathe, our diet, our education. All these factors can influence a mother and a baby’s health and all of them compound differences in maternity outcomes for different communities. But those differences don’t explain everything.
Even when you control for income, Black and Asian babies are more likely to die than their white counterparts. Black and Asian bodies aren’t less capable of having babies - so we know that there is something systemic happening in the maternity care people are getting.
Some of the parents we spoke to explicitly mentioned how stretched the healthcare system is. They could see how professionals were having to make decisions really quickly with so many competing demands on their time and they were left wondering whether stereotyping was leading to some flawed mental shortcuts when professionals didn’t have the time they needed to really consider the person in front of them.
Health inequalities in UK maternity outcomes have been known about for over 70 years but we still haven’t resolved them. Do you think there is any reason for optimism?
I do. Although we've known that these inequalities have existed for 70 years, women's health and inequalities in health outcomes haven’t really been seen as much of a priority, and we've not really started talking about them until fairly recently. Over the past few years there's been a real focus on inequalities across the whole spectrum of society, whether that's in health, social care, prison, policing. There’s real interest now. The previous lack of interest has meant that we’re less developed as a research field. We’ve not had researchers and funding and expertise in place, but things are starting to change.
People are starting to be more open about their experiences and the stigma and discrimination they are facing. This helps in two ways. It’s allowing more open discussion and engagement work and helping people get access to the support they might have been needing for years. It’s also helping to show that this is a big, deep-seated problem. You can’t just give people a few pointers and solve it all.
We need system change and for that, political interest is essential. We’ve made a lot of progress in establishing what the problem is, gathering data and case studies. We know that these issues exist. We don’t really need much more work to tell us that. But what we don’t know is how we’re going to fix this.
That’s where work now needs to start. Addressing the inequalities rather than restating them.
The National Institute for Health and Care Research has recently announced a £50 million research fund to tackle maternal inequality. They are looking to put together a consortium to explore some of the bigger questions about which interventions work best so I’m optimistic about the outcome of that as well.
Off the back of our Listening Project, we launched the End Inequalities in Baby Loss Campaign. Parents who took part in the listening project have written an open letter to the new government asking them to prioritise tackling inequality. It already has over 2,200 signatures. It definitely feels like we're at a tipping point. It feels like momentum is really building. There’s a level of interest that there hasn’t been before.
I’m optimistic that if we can maintain this momentum and pull together, we can ultimately save babies lives and relegate to the past the time where ethnicity plays a part in a baby’s chance of survival.
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