Q&A with Tinuke Kayode, co-founder of the #FivexMore campaign, to mark the UK’s first Black Women’s Maternal Health Awareness Week

Tinuke is the founder of the #FivexMore campaign, highlighting the racial disparities in maternal healthcare that mean Black women are five times more likely to die during pregnancy and childbirth than white women. Tinuke also runs Mums and Tea, an online and offline community for Black mothers. Between 16-22 September, #FivexMore is holding the UK’s first Black Women’s Maternal Health Awareness Week (#FiveXMoreAW20), with their first online event taking place on Saturday, 19 September.

In between all that, and raising a 2-year-old and a 4-month-old, Tinuke somehow found time to sit down for a chat with me about the campaign, and the personal experiences that inspired her work. This piece forms part of Hysterical Women’s forthcoming #BlackWomensHealthMatters series, which will run throughout October in partnership with Modibodi. I’ve brought its publication forwards to coincide with the awareness week and online event.

SG: What inspired you to start campaigning on Black women’s maternal health?

TK: My first experience of giving birth, when I had my son two years ago, wasn’t really a pleasant one. I had preeclampsia, which was diagnosed quite late, even though I’d been showing all the signs from midway through my pregnancy. It wasn’t picked up until the last minute, so that was obviously really really scary, because for ages I’d been walking around with this potentially life threatening thing.

Then the actual birthing experience was awful. I had to be induced because the baby’s heart rate was dropping. It was my first time, so I was quite scared anyway and didn’t really know what to expect. The midwife who induced me reassured me, ‘it’s going to take at least 24 hours for anything to kick in; just sit back and relax’. I tried to do that, but within four or five hours I was feeling a lot of pain and what I now know to be contractions. At the time, when I said to the midwife, ‘I’m in quite a lot of pain, I’m not really sure what’s going on’, I was dismissed. I wasn’t checked over, and I was left like this for hours. It wasn’t until I was literally bent over double on the toilet, vomiting profusely with fluids coming out of everywhere, that my waters then broke and the midwife checked me. I was eight centimetres gone and I will never forget the look of shock on her face.

Because I was eight centimetres gone, the window of opportunity for any pain relief or anything have been missed and baby’s heart rate was dropping, so I was rushed to the delivery suite. But of course by then I was so exhausted, I was so tired, and the baby was back to back, which didn’t help. I physically could not push him out. I couldn’t push. I just couldn’t do it. In the end they used forceps to get him out, and he was fine. Everything ended up turning out fine, he was healthy, but I was like just get me out of this hospital. The whole experience was really stressful and actually really traumatic. I wasn’t given any pain relief because I wasn’t believed; nobody believed that I was in labour.

How long after that did the #FivexMore campaign come about?

What solidified my experiences was founding a mothers’ group called Mums and Tea, doing monthly meetups for Black mothers. In all the NCT spaces and all the children’s centres, I was the only young Black mum. I was still going of course, but I just didn’t feel I could really connect with anyone because we didn’t have those commonalities in terms of being a Black British woman of African descent. The more I did my meetups, the more I started more I heard labour stories of women, like me, not feeling like they were listened to, their pain not being taken seriously, that kind of thing. I had already gathered quite a lot of Black mothers’ experiences by the time the MBRRACE report came out in 2018, a year after I’d given birth to my son.

When that came out, I was very shocked about the [five times more] statistic, but I wasn’t surprised because of what I’d heard. So I start delving deeper, and the more I did my research, the more I found out that actually this has been going on for decades. As early as 1991, when my mum gave birth to me, Black women had a higher risk of dying. No data was collected previously, so they didn’t know just how much. But if you look through the reports, over the years, you see that number steadily rising so that now, nearly 30 years later when I’ve given birth to my daughter, I’m five times more likely to die during pregnancy or childbirth.

I’ve got a daughter, I’ve got sisters, I’ve got people I care about who are going to go through pregnancy and childbirth, and I don’t want that to be the outcome for them. I reached out to my friend Rebecca, who runs Prosperitys, which supports Black and South Asian pregnant women, and we joined forces to create the campaign. #FivexMore came about a year ago now, to help change these outcomes for Black women, and my daughter was about four weeks old when it really all started taking off.

What are the common themes in the stories you hear about Black woman’s experiences in pregnancy and birth?

What comes up over and over and over again is the feeling of not being listened to, or being dismissed by health professionals, and feeling like they’re being treated differently because of the colour of their skin. I’ve had accounts of women who have been asked all sorts of questions, or had assumptions made about them – ‘is English your first language?’ or ‘is your baby daddy around?’ – all these really unprofessional, unrelated things coming from midwives, or making them feel like they’re over-exaggerating. They end up questioning, thinking maybe I am exaggerating. Again, I’ve heard stories of pain relief not being given, or women being sent home, because midwives didn’t believe they were in labour.

I know a lot of people may say, well this is this is this is a common thing within the NHS. A lot of women get sent home, a lot of women are not given pain relief, and a lot of like white women have very traumatic birth experiences. But I would say I think the statistics speak for themselves. The fact that black women only account for four percent of births within the UK, but are five times more likely to die, is a problem. Of course in general it’s very safe to give birth in the UK; we have one of the lowest mortality rates in the world, which is amazing, but there’s a disparity in who is dying and that’s what we’re very passionate about.

I know you’ve just submitted evidence to the Parliamentary inquiry around this; what would like to see change a policy level and at a frontline healthcare level to improve those outcomes for Black mothers?

So, our petition gained over 100,000 signatures within a week, which was amazing, at the time when everyone was talking about Black Lives Matter. But the response we got back from the government was very wishy washy. That was quite disappointing. We want something to change, we want our patients to be heard, we want this to be spoken about within the curriculum, because a lot of health professionals who we speak to don’t actually know it’s a problem.

We want to continue raising awareness, and we want people to start having these really uncomfortable and difficult conversations about race and racism, and the role that plays in the treatment of Black women and their outcomes. We don’t want a sort of a blame culture going on – we’re not saying all midwives are bad, all midwives and doctors are racist. That’s not the case at all, it’s just about trying to unpick what’s going on here. This has been going on for decades and, unfortunately, the number has been steadily rising. We don’t want to push the blame back onto Black women by saying they’re more likely to have preeclampsia or heart disease, because that in itself is not enough to warrant the statistics.

We want more training, and for health professionals to be aware of this statistic, so they can check themselves for unconscious bias when they’re giving care to Black women. We want Black women’s voices to be heard and listened to, and for our concerns to be taken seriously.

What advice and support do you have for pregnant Black women?

We’ve teamed up with the Positive Birth Company to offer 100 Black women every month free access to their digital hypnobirthing course. We also have our six-step recommendations for women:

  1. Speak up if you feel like something isn’t quite right, or if you’ve got any questions.
  2. Have someone who can advocate for you – a friend or family member, your partner, someone who is clued up about pregnancy, labour, childbirth, who knows what to expect and can help support you and advocate for you if you can’t speak up for yourself.
  3. Seek a second opinion if you’re not happy with the level of care you’re being given. You can request a change of midwife or doctor.
  4. Trust your gut – nobody else knows your body better than you. If you feel like you’re in pain, if you feel like you’ve got a headache, if you feel you’ve got that twinge in your belly, trust your gut, know your body and speak up. Those two go hand-in-hand.
  5. Do your research on what to expect from pregnancy and labour, using trusted websites like the NHS, NICE and patient.info.
  6. Document everything. Make sure everything has been recorded correctly in your maternity notes. You can go one step further and to keep a diary for yourself of what’s going on as well.

Find out more and get involved with the campaign online, on Twitter and on Instagram, where you can submit your #FivexMore selfie

Sign the petition, write to your MP, and donate to the campaign

Find out more about Black Women’s Maternal Health Awareness Week, and sign up for the (free) FivexMore event