Black maternal health care and community groups: building trust and bridging gaps

Key:

• SA: Siva Anandaciva

• AS: Amanda Smith

• BN: Benash Nazmeen

• CB: Chrissy Brown

SA:        Hello and welcome to the Kings Fund Podcast, where we explore the big issues and ideas in health and care.  Today, we’re going to be exploring the role community groups play in helping black mother’s have a better experience of the health and care system. 

              Now, I’ve only experienced it from a distance, but becoming a mother can be a fulfilling journey and isolating struggle, and more often than not, a combination of both of those things.  NHS maternity services can play a huge part in this and unfortunately, there have been well documented care failings before, during and after birth for too many mothers.  Although these issues can affect mothers from all backgrounds, there are clear racial disparities in how maternity services are being experienced in this country.

              I’m Siva Anandaciva and I’m delighted to be joined by three guests to explore this issue, Amanda Smith, the founder and Chief Executive of Maternity Engagement Action, Benash Nazmeen, Assistant Professor of Midwifery and co-founder and co-director of the Association of South Asian Midwifes, and Chrissy Brown, the founder and Chief Executive of the Motivational Mum’s Club. 

              Amanda, Benash and Chrissy, welcome to the podcast and thanks for joining me.

AS:         Hi.  Thank you,

BN:        Hi, thanks for having us.

CB:        Thank you, hello.

SA:        I wanted to start by learning a little bit more about you and the work you do.  So, could you tell me about yourselves and the organisations you’re working in? Amanda, why don’t we start with you?

AS:         I am the founder and CEO of Maternity Engagement Action.  So, we’re an organisation, we’re based in Birmingham, supporting women in the West Midlands.  We support black peri-natal women, from conception up until their babies are two years old, so it’s through the post-natal space as well.  What we try to do in the work that we’re doing is engage with black maternal and perinatal women in the community, connect them to each other, because isolation is a big issue in our area, but also we try to connect their experiences and their stories to the system, so that they can hear first-hand what is happening to women in the community.

              We also provide some leadership activities with a project that we do called Maternity Ambassadors for Change, where we’re encouraging women, black perinatal women to know, that we are leaders of our own wellbeing, we are leaders in our communities.

SA:        Bemash, could we hear a little bit about your story?

BN:        I am a healthcare professional by background.  I am a midwife.  I trained as a midwife.  I’m now an educator and I suppose in my role of education, I suppose I’m conscious that we have a Eurocentric curriculum, we have a Eurocentric lens when we’re having taught content.  So, ensuring that we have removed that lens and we look at the global lens, we understand actually, the fact that something as simple as skin colour can affect outcomes.  I sit on the embraced perinatal mortality review board, and most recently, in December, the report came out looking at neonatal deaths and still births for babies, specifically looking at outcomes for Asian companies in comparison to their white counterparts.  That community is in comparison to their white counterparts, and what were the differences that were being recognised within documentation?  I sit on the stakeholder group for the race and health observatory, and finally as Association of South Asian Midwives, we’re a group of marginalised midwives, who are representative of the communities that we’re talking about right now.

SA:        Thanks Benash.  Chrissy, could you tell us about you and your organisation as well please? 

CB:        Yeah, absolutely.  I come from a slight different angle with the Motivational Mum’s Club.  When I created the Motivational Mum’s Club, it wasn’t initially to start off with, I’m going to raise awareness on perinatal and maternal mental health, it didn’t start off like that.  It started off with me coming from a lived experience perspective.  I created the Motivational Mum’s Club as initially a networking group.  I didn’t even have it registered at all.  I literally just got a group of mum’s together after the birth of my first born, which was amazing, hosted our first event, had so many mum’s from all different walks of life come and talk about their journeys into motherhood, and little did I know, that’s where my lived experience begun, because I was pregnant with my second born and my first born was only six months old.  So, that transition of being a mum of one to two under two was so overwhelming that it did have a massive toll on my mental health and that’s where the Motivational Mum’s Club was reborn.  That is where I took on my own initiative about my lived experience and my tradition, to being the Lioness I am today, black mother and birthing people, do not access any help when it comes to their mental health, why is that?  This is why the community leaders are there, to ask the whys.

SA:        Thank you Chrissy and thank you all.  What comes through really powerfully is a sense of, we’re going to change things, we’re going to improve things.  We don’t just want to diagnose the problem.  That’s what I wanted to talk about a little bit more.  Amanda, I wondered if I could ask you, how do you reach the people that need to be reached?

AS:         We do what we say we do and what’s on the tin, community engagement.  So, I’d spent many years as a community engagement, involvement, all the different things you can be when it comes to community development in the health sector and local authority.  I spent many years doing that and always thought, we’re just scratching the surface.  We’re not really engaging, we’re just ticking boxes and making the system look like they’re talking to people or engaging with them, when we’re actually not.  So, community engagement is how we started.  We started in 2018, and we saw that…we were looking at what we used to call the BAME community.  It’s a terrible word now, it should be just crossed out of everybody’s vocabulary.  And then we had Covid and I realised…I looked around and I thought, there’s nothing for black women.  No one is speaking to black women, no one is engaging with black women, and just before Covid, we’d had the Embrace Report as well.  That was talking about black women being five times more likely to die, and I said, I need to target black women in our communities.  So, it’s all about trust, how we’re making sure that the women trust us.  Just because I’m a black woman in the community, doesn’t mean I have the right to just approach another black woman and start asking her questions.  It is about how I build trust and how I am myself a safe space as well.  How am I a maternal or a perinatal safe space, as well as the physical spaces that we’re thinking about where women come together?  How am I showing up?  How am I speaking to women?  How am I engaging with women in the community?     

             So, it was really about drawing on the fact that I am a black woman in a community that has many black women who have shared experiences about not really feeling safe in their birth spaces, not being listened to when they’re talking about their experiences or their pain or what is going on, and really, just not being taken seriously. 

              We were also thinking about what are the community assets?  What can we do in the community that supports black women when they have to go into these spaces?  The NHS is a very important space for women to go, have their babies, receive their care, but it’s a little bit of a…even though it’s not, it is perceived as a bit of a nine to five space.  So, outside of that nine to five space, what is there for women?  How are we engaging women in the community?  How are we supporting them to not just support themselves, but to support each other?

SA:        It’s Covid, you’re sat there and you recognise this massive gap and people who are just going to slip through that gap unless it’s filled.  Where did you start?

AS:         Well, first of all, there was a level of frustration, because when I was speaking to the system about the lack of engagement with black mum’s and the things that we were hearing, especially  during Covid about nobody being able to come in, nobody being able to support women, but knowing that just prior to that, we’d heard about five times more and it was all in the news, so women are going into this space thinking, am I going to be one of those five times more mums?  So, I just said right, you know what, you just need to do something and start. 

             We started off having conversations with women online and that’s where we found, because we were going into Covid, a lot of people were having these conversations.  So, we started to do activities.  We did a couple of perinatal mental health activities, we did some birth stories online as well, but we always made sure that we had a facilitator that supported his storytelling process, because we did not want women to tell a story that took them back and retraumatised them or overstimulated them, so we always wanted to make sure that whatever we were doing, we had the right facilitators that came in and supported women.  But really, online is where we started to find most of the women.

SA:        Great, thank you.  Chrissy, could you say a little bit more about, like Amanda, how did you find the people who needed help and how did that change, how did that grow?

CB:        As I explained, my story started off very different.  It started off an a very positive note.  So, I found myself, I’ve got a very close unit of friends and I was literally the last one to give birth, so everyone was back at work and I found myself at home, with my newborn, there was support around, but I really wanted to branch out.  So, what I did was created a page and I became that online stalker with mum’s, literally in their DM’s, in their inbox, following them, letting them know about this new group that I’ve created and I’m going to be hosting an event.  I hosted my first event and I had 40 odd mum’s show up.  I didn’t know anyone apart from probably four mothers.  So, for me, I felt like, this is impacting, I’m going to continue.  I loved the buzz.

              So, for me, I’ve always been ambitious and always been an overachiever.  So, for me, I wanted to keep carrying this on after my maternity leave, and all of a sudden I just started getting all these engagement, and followers, leading into the birth of my daughter and that as I explained wasn’t great, and I started sharing that.  That was my healing in a space where women were able to give me support on my mental health, because when I did talk about it in my family, I was told to pray about it, I should be grateful to have children.  Some people can’t, and I turned to my online platform, and when I did turn to my online platform, I started noticing, there was a theme here, especially in the African culture.

              So, to talk about mental health, they translate it as, are you saying you’re going mad?  That’s where my trust with the mother’s in the community grew, as I explained, organically, sharing my experiences and wanting to change that, and as I dug deeper, I started literally sharing stats that one in five women are most likely to be diagnosed with a mental health problem, and it can lead to one of the leading causes of death, which is suicide, and I just wanted to know why?  Why am I finding this out when I’m literally online and I’m seeking help?  Why is this not mainstreamed?  Why are we not normalising these conversations?  especially within the black community, why?  That’s where I started noticing that it is a cultural issue and that is what is stopping us, and this is where I came in.  I really wanted to educate healthcare professionals, because when I look back, it’s crazy, this out of body experience that you do have when you’re actually going back to your lived experience.  If a healthcare professional had asked me the right questions in a very short period of time that they had with me, a barrier could have been chipped away, not to say it would have been completely broken down, it would have been chipped away, for me to see some light peaking through.  But the right questions weren’t asked.  When I had my first born and my mental health was absolutely fine, I was engaging.  I was overly talking, compared to my second born.  I was very quick to the point, shut down, no eye contact, nothing was there for me in regards to, can I refer back to any communities?  Nothing was there.  So, it’s all these little things where I come in and I provide that culture intelligence and also training on how to actually make sure you’re picking up on key signs, but then also working with the community of mothers on the underground, to break those barriers and create a safe space to know it’s not just them.  There is somewhere where you can actually come and actually seek help and it’s not just you.  But then at the same time, being that essential bridge for these mothers and birthing people to create a relationship with a healthcare sector that we unfortunately never had. 

SA:        I’m really latching on to some of the imagery you’re using Chrissy, about being a bridge between communities and services.  I just wanted to ask one final quick question to Amanda and Chrissy on connecting people, because it feels like if we were doing this 25 years ago, we’d be talking about town halls and community spaces and you’ve both mentioned the importance of online connection and what your thoughts were on that and how you’re approaching it.  Amanda, can I start with you?

AS:         In Birmingham, here, I found it very difficult to find black women and I think the system in terms of the local healthcare system in Birmingham, were like, just go out and find black women and do this work in these spaces.  It’s not the same as for example, the Asian community, where the culture is different.  We as the Caribbean community and the African Caribbean communities, English is our first language and probably church isn’t the place we go to like we used to, so it was really difficult to just go out and find women in the community, so online was the space that I found them, and it was great.  It’s great gathering and finding out and sharing and having these conversations.  But post-Covid now, it’s still a space that women do use, but now it’s almost like that digital life that we were in, we need to get out and see each other and be in the community with each other, because that’s where we grow and learn and support, peer support, and I find that part of the online engagement in this particular work, can lead to a lot of isolation, because the person that you meet, sometimes you see them online, they’re very gregarious, they’re out there, they look gorgeous, they’re amazing.  But when you meet them in person, it’s a completely different person.      

              So, I think it’s okay to start an engagement online and start having conversations and sharing information, but events need to happen, safe spaces need to happen.  So, as we’re growing and developing, we try to have more communal spaces, but it’s not easy Siva, it’s not easy getting people.  I’ve been doing community engagement for 20 odd years, and trust me it’s not easy.  There’s a lot of, you have to hit the ground a lot.  You have to do walking.  You have to wear out a lot of pairs of shoes to engage with the community and get them involved in what you want to do.  But sometimes it feels like we don’t have a choice, because if we don’t do it, who will.

SA:        And Chrissy, this sounds like a bit of a stupid question actually, but who are the people you’re worried about that you’re not reaching, or maybe in a more positive sense, who are the people you’ve found where you thought gosh, I hadn’t even thought about your needs until we found each other, and how has that changed your approach?

CB:        I do worry, but if we want to make sure we are making real impactful change, what group needs the help the most at the moment with the highest rates of dying during childbirth, accessing mental health?  Unfortunately, it is the black community.  We’re the highest, followed by the Asian community.  So, how can we make sure that we are making real impactful change for them, whilst also considering everyone else?  That’s the bit that I worry about and it’s important that we all make sure we are connected together, so we can signpost and no one isn’t getting forgotten about because we do run at 100 miles per hour and we do forget about the other community leaders that are doing the same thing for others. 

              So, for me, that is where the priority is, but then at the same time, it’s also being proactive about what is around you so we can make sure we are all connected, because Amanda again, you said it so nicely, that it’s not just all three of us that are sitting here doing this.  There are a whole lot more women, community leaders, males, family members that are actually doing this and how do we make sure we’re tapping into that?  Because a lot of the time we don’t talk unfortunately.

SA:        Benash, one of the things I really wanted to ask you about was cultural competency in maternal health care services.  Your experience of it, how important it is, the work that you’ve been doing on this issue.

BN:        If we have a culturally safe environment, we remove power imbalance in care, and we have approachable, two way conversation.  We talk about bias and the science of bias and where bias is embedded and it is embedded across all the systems, who has been doing research and who have been participants of research?  Well, it’s quite commonly known that historically, we’ve mostly done research on white males.  So, researchers need to look at themselves and how they work, and what voices are at the table.  The point is, the people who look like me, there’s very few of us in research, and the higher up you go, there’s less of us, and the more our voices are not considered gold standard, or the more we are talking about our community specifically, the less we are present.  And the biggest bias, the hard to reach…no, these are not hard to reach communities in research.  Work with your communities.  We are here, we exist and we want to be involved.  So, why are we not looking at some of the conversations that Chrissy has mentioned and I just really wanted to come back to that, regarding mental health.            

              I once did a session as part of Assam where we went to a community group and we were doing education around mental health and what mental health post pregnancy, and in pregnancy, what are the different conditions, how they might present, what are the signs, what are the symptoms?  This one woman at the end raised her hand and she said, I had my first child 27 years ago.  I’ve had four children since then, and I now realise I had post-natal depression and I still do have it now, 27 years later.  And only from someone going and speaking around mental health to this community, to our communities did it resonate and she realised that there was support needed there and where does this come from?  This is a lack of education and understanding around our communities.  It’s a Eurocentric lens on mental health that we’re being taught, that means as healthcare professionals, we’re not recognising and referring to the peri-natal mental health services that do exist.  We’re not having our service users represented in all the specialist clinics that exist because we are not recognising it. 

              If you are not sure what is going on in a community and you don’t know, then there’s three things that you can do.  If you know there’s injustice, and you don’t know what is going on, then there is personal transformation.  You can go and learn about this community.  You can listen to authors and join community engagement events, ask third sector that is currently doing all this work.  But if you are only in taking from the echo chamber that is representing you, then you are not hearing these other voices.  If you know and you’ve done the personal transformation bit, you can educate other people.  We don’t always have the energy to do the education, so we need people to educate other people too, and correct…and don’t be a bystander.  If there’s an issue, address it. 

              The second thing is alternative spaces, and Amanda and Chrissy have demonstrated beautifully the alternative spaces they’ve made which is having safe spaces for communities who are marginalised and who have lack of access to services and in healthcare, that can be antenatal education, specifically for certain community members, possibly by representative members of staff, but it’s aimed at them.  It’s co-designed with them, it answers the questions they have.  It’s culturally safe.  Fifteen minute antenatal appointments for every person is not enough.  If you think about someone who has got learning needs, is neurodivergent, they need longer than 15 minutes, just to understand the information that is coming to them, never mind asking questions back.  If there is a language barrier and you need an interpreter, you cut that appointment in half to 7.5 minutes, because you’re talking to someone and they’re talking to someone else and then they’re coming back to you.  I can talk about the weather for 7.5 minutes.

CB:        And could I just say something there that you just mentioned was, this term that is always being thrown around, which I can’t stand, which is hard to reach, it should be something that shouldn’t even be in our vocabulary when we are talking about such a sensitive topic.  I find a lot of the time, when there is some sort of project going on, co-production to produce something, community leaders tend to get approached half way through this project.  Why are not being included from the beginning to get it right?  Then this is where this crazy terminology comes in that we are the hard to reach.  It’s because you are actually getting it wrong from the start and we are not hard to reach.

BN:        Hard to reach?  No.  Under represented? 

CB:        Yes.

BN:        Under served?

CB:        Absolutely. 

BN:        Let’s look at how we think about our communities. 

SA:        And Chrissy, you were talking about moments where someone had been able to ask the right questions in the right way at the right time, what a difference it can make to people’s lives.  Have you seen changes?  Have you seen improvements in how services are delivered in all the time you’ve been advising and supporting them? 

AS:         Isn’t that really funny that you’ve asked that question, and we’re all going hmm?  Personally, here in the West Midlands, there’s been more conversations, and there’s been more opening up of people wanting to have conversations about the community that we work with and how they can work with us to better engage with the community.  But I would also say that there is something about letting go of either, and letting go of being in the right and opening up minds and hearts and thoughts about actually, there is something else that’s going on that is not in the system that is really working out there.  How can we engage with that?  Because a lot of the time, I think that the system looks at us like, oh, they’re okay, but really, are they doing the work that needs to be done?  The work that we’re doing here in the clinical way, or the clinical setting is really important, but there is a way that you can marry that and it can come together. 

              Now, when I look at some of the work in London and I see that some of my colleagues are really embedded in changing things or improving things or getting involved in the system in different settings, I’m like actually, it can work, it’s just that maybe in the Midlands, we’ve taken a bit longer to get there maybe?  I’m not sure.  But there are conversations that are happening and things that are opening up, but I don’t know about improvements, I’d have to go and ask those mums again in the community, are you seeing changes in the system in terms of your perinatal journey?

SA:        I trust your sense Amanda, your sense of what is going on.  Chrissy?

CB:        In regards to improvement, there is a good shift in regards to including community leaders in coproduction, of significant research and projects.  From that high level, yes, we are being included.  We can talk about the process, but I think that’s for another podcast.  But in regards to us being included, yes, there is some sort of movement.  But I would question what is going on underneath, i.e. when those mothers and birthing people are delivering their children.  For me, from what I can see, there is still a lot of work that needs to be done there, and the care during and after birth.  For me, I do question that a lot.  I can say there isn’t much change and there’s still a lot of work to do, but it’s not to say, there isn’t willingness to learn and for it to happen, because there is and I would never ever dismiss that from any healthcare professional.  The NHS, they are doing a good job and I don’t want to take that away from them, but then at the end of the day, they are stretched and that’s where things tend to get lost and that’s where unfortunately, these disparities happen.

SA:        Thanks Chrissy. The sense of willingness to learn, but my goodness, a long way still to go.  A long, long way to go.  Benash, your perspective?

BN:        I know that from an education perspective, the current students are having different education, so I have hope for the future and at the university where I work at, the University of Bradford, we have focused on ensuring that we are accessible and we have representation and we’ve worked on our recruitment processes and we’re looking at trying to improve our retention and attrition and also the curriculum, but also from the other side, I was the co-chair for the birth rights enquiry titled, when it was released it was titled, Systematic Racism, Not Broken Bodies, and they interviewed healthcare professionals, service users.  They had an intersectional approach.  They had people across the board with different needs as well as multiple needs and they also interviewed key organisations.  But looking at it from the service users perspective, every single service user, and what that gave feedback, even in the focus groups, said that they experience good practice.  So, despite all the other things that were going on, and all the other experiences, at least once in their journey they experienced good practice.  So, there is good practice out there, but we need to remember that, we need to nurture that, we need to grow that.  We need to make that a culture.  I think if we improve the service and the systems for the most vulnerable, we’ll find improvements across the board for everyone. 

              I always use this anecdote, but when we lowered pavements for wheelchair users, mothers with prams also benefited.  Our changes for some groups, are advantages for all groups.

SA:        Thank you Benash, thank you all.  You’ve given leaders in the health and care system a lot to think about.  You are also people in positions of leadership, so my final question was, more advice for your peers.  Benash, I’ll start with you. 

BN:        Don’t be scared about getting it wrong.  There is a barrier.  If you’re worried that you’re going to say something that offends, that adds another barrier to communities that already face barriers.  Show your intention.  Your intention is to improve outcomes.  Be clear about your intentions and if you get something wrong, apologise.  No need to make excuses, apologise, say we’re going to do better and carry on and make your intentions clear.  Stop letting fear get in the way of us connecting with our communities. 

SA:        Thank you, Chrissy?

CB:        Don’t give up.  Keep going.  If you can save one life, it just takes that small drop of change in the wider ocean.  You’ve already contributed to such a massive change, so for me, I would say, don’t give up, keep going.  There’s going to be loads of challenges along the way, but just know why you’re doing this, it’s the why and that is to create a better change.

SA:        Thank you, Amanda?

AS:         I would say that self-care is really important, because we tend to go out there and do so much work and get ourselves really involved in the changes we want to see, the fact that the system sometimes is a little bit slow and it can get very frustrating and we have to embody self-care because if we’re telling communities to look after themselves and care for themselves and we’re encouraging those safe spaces, we need those safe spaces ourselves.  We need to look after ourselves and care for ourselves.  If the system is linear and rigid, it’s not looking after the midwives and care givers, the healthcare professionals, and then they have to look after the mum’s, or us, who are needing the care as a patient.  So, if they’re not being looked after and they are stressed, and they are feeling negative, that feeds down to those in their care. 

SA:        Thank you all.  Thank you for really thoughtful and thought provoking answers to that question, but also for thought provoking material throughout the entire podcast.

CB:        Could i just read one quote, because we’re all here, literally because of change.  If we don’t stand up for ourselves, if we don’t demand better, nothing changes.  If we can make one small change, doesn’t it make it all worth it for the next generation to come?

SA:        Well, hand on heart, I could have listened to you all day and thank you for everything you shared.  So, thank you to Amanda, Benash and Chrissy for joining me today and everything you’ve shared. 

If you've been affected by any of the issues raised in this episode, there are a number of organisations that can offer help and support. 

• Tommy’s – have a webpage which outlines resources for Black and Black Mixed-Heritage pregnant women and birthing people. 

• Motivational Mum’s Club – offer free mental health sessions to mothers and mums to be, with qualified mental health specialists who are also mothers, as well as hosting speaking events and meet-ups. 

• The Motherhood Group – provide a range of support services, including peer, counselling, doula and legal support. 

• Black Mothers Matter - provide a range of services through their community perinatal groups.  

• Black Mums Upfront - offer a range of resources to support Black mothers and broader communities.