Meet the NHS activists fighting against healthcare inequality

In 2018, a then 22-year-old Kyia Omoshebi was sitting in a University of the West of England (UWE) lecture hall, typing notes on her laptop during a routine day of teaching. She was in the second year of her Midwifery studies, and while learning the ins and outs of childbirth, her lecturer told the students something that would stay with Kyia long after she finished her training.

“I was the only Black student in my cohort, and they brought up the statistic that Black women were five times more likely to die during childbirth than white women,” Kyia recalls while seated in an east London pub, pausing before taking a sip of her half pint. “No one flinched. Not one person flinched at all in a lecture hall of 60 people – I was in tears, I thought I understood racism before but not in a way that was so systemic and so institutionalised.”

Over the past five years, that disparity has fallen ever so slightly. Black mothers are now just below four times more likely to die in childbirth than their white counterparts. It’s still a huge difference, with tragic consequences. Black babies are twice as likely to be stillborn or die within the first 28 days of being born than white babies, while for Asian babies it’s one and a half. It’s caused partly by the structural imbalances within the NHS. Although the health service has a hugely diverse workforce overall, disparities are embedded into the system. “The NHS is founded off of a lot of migrant workers – it’s the same age as the Windrush Generation and that’s not a coincidence,” Kyia says. “But it’s a massive concrete ceiling. You get to Band 6 – as an average midwife I’m Band 6, and an average nurse is Band 5 – and below that is very diverse and then above that is completely whitewashed.

“Generally you have poorer trust between some [marginalised] communities and institutions – be it healthcare, justice, education,” she continues. “Which massively contributes to not being able to be vulnerable and confide that something’s wrong and you can trust someone enough to say ‘look, something’s happening to me, I don’t know what it is’ or ‘I’m not feeling okay’, because we’ve got a lot of research to say Black women don’t feel like their needs are responded to.”

Healthcare becomes far less successful when there is a breakdown in communication between patient and caregiver. “We’ve really got to listen to a woman’s intuition, because they know way more about what’s going on in their body than we do,” Kyia explains. “When you’re not able to build a good relationship with your professional or if there’s a breakdown in communication, and you’re not being listened to, then it creates a very unsafe environment. Say [a woman] has been unvalidated so many times that she doesn’t believe anything’s wrong when something is wrong, and she doesn’t say anything – and then she’s got sepsis [a life threatening infection].”

Kyia is a self-described “activist midwife” and since that 2018 lecture, which opened her eyes to the devastating effects of healthcare inequality, she has been fighting to improve care for marginalised women and mothers. It’s a journey that has seen her win an Iolanthe Midwifery Trust Award, address thousands at Black Lives Matter rallies in 2020, and return to her former city as an honorary lecturer at the University of Bristol to help teach the newest generation of midwives how to become more aware of their biases and to apply their learnings to healthcare scenarios.

Now, for the past six months she has been working as the Diversity and Inclusion Specialist Midwife at east London’s Homerton Hospital. It’s a new role – with only one other person filling the same role in the capital, and two more across the rest of the UK – created to address health disparities that exist within the country’s healthcare system, with the aim of improving care and ultimately saving the lives of mothers from marginalised communities. Her work oversees the creation and implementation of anti-racism frameworks for care, creating targeted antenatal classes for Black women, as well as acting as a middle-point between midwives and senior leadership for staff to raise concerns about discrimination. “For the workforce, people feeling able to report racism is a huge thing,” she says. “By having someone in post, I’m someone people report to who they never would have reported to before.”

The creation of the role comes as part of a growing movement within the NHS to close the gaps in healthcare outcomes in communities from diverse backgrounds – led by healthcare activists like Kyia. They are disparities that were made clear during the COVID pandemic, with its disproportionate impact on the UK’s ethnic minorities. The creation of the role also comes in the wake of The Black Lives Matter movement that erupted in 2020 after the killing of George Floyd in Minneapolis, which brought the racism embedded into our institutions into sharp focus.

Celebrating its 75th year of existence this year, it’s a rare feel-good story within the UK’s public healthcare system,which has seen real wage falls in the face of a decade of austerity and a cost of living crisis, underfunded services and staff shortages, ever-growing waiting lists and mass industrial action including the first joint junior and senior doctors’ strike in NHS history. More junior doctor strikes are set for this week.

“I think there has always been appetite for change,” says Dr Rageshri Dhairyawan, a consultant specialising in sexual health at a London hospital, and an active health inequalities researcher and voice. She has just penned a book called Unheard: The Medical Practice of Silencing, which is due to be published in July 2024. “I think COVID made people more aware of these inequalities even though we knew they’ve been around for a very long time, and people are interested in change.”

Dr Rageshri points to the creation of the NHS Race and Health Observatory as proof of the tangible change that is happening in the nation’s public health service. Announced in May 2020 and beginning its work in 2021, the Observatory is an independent organisation that investigates and commissions research into healthcare inequalities. Upon its founding, Dr Chaand Nagpaul, BMA council chair, said: “The creation of the Race and Health Observatory is a pivotal moment in the efforts to overcome longstanding race inequalities in health, and I’m delighted to be able to play my part on the Board. The alarming and disproportionate impact that COVID-19 has had on ethnic minorities has reinforced the urgent need to address the structural race inequalities in our society.”

As a young doctor working on HIV wards in the late 00s, Dr Rageshri started to become aware of healthcare inequalities when she noticed that people who were being admitted to hospitals with developed AIDS symptoms and health complications, were disproportionately from marginalised backgrounds. “HIV is now a very treatable condition, and we have really good outcomes in this country, but I noticed that the people who were really sick on the wards were people with AIDS defining conditions that we shouldn’t really be seeing anymore,” she recalls. “And they tended to be people who came from certain backgrounds – ethnic minority backgrounds, and people who were poorer, people who face social inequality in other ways. So it really got me thinking about how these people missed testing before and what makes it hard for them to engage in medical care.”

Over the past decade she has worked on supporting women with HIV and advocating for health equity in sexual health, and healthcare more widely. “I did research looking at intimate partner violence among women with HIV and found more than half of women in our clinic had experienced partner violence, and that [research] has impacted national guidelines. I’ve done work nationally looking at HIV outcomes by ethnicity, and we found that among heterosexual men and women, people from ethnic minority backgrounds were more likely to be diagnosed very late and be less able to stay in care, so my clinical work has impacted my research and policy work, and my charity work and activism.”

Her book and broader work is testament to the complicated, interwoven nature of healthcare inequalities. Gender is a contributor to poor outcomes in hospitals and GPs across the country, as is race, class, sexuality, or which part of the UK you live in. It’s led activists working within different areas of healthcare to call for greater co-operation with each other. “We’ve been talking about maternity deaths for Black women and Asian women for a very long time, and we know that there’s a massive failing of pregnant people in the NHS in terms of care – and those two things are connected, but the connection is not being made publicly because we’re so used to setting up organisations around a single issue,” says Edem Ntumy, Co-director and Community Engagement Officer of the Reproductive Justice Initiative (formerly Decolonising Contraception), a charity and campaigning group that seeks to reform sexual and reproductive health, as well as influence policy and widen provisions for marginalised people.

“Reproductive justice talks about how all these things come together to impact people’s lives, and some of those experiences are really acute for certain groups – for example disabled communities, Black communities, queer communities, immigrant communities. But it does actually impact all of us,” Edem continues. “[For example], with politics moving to the right, we’re seeing people who have lost pregnancies being criminalised – being given jail sentences for not carrying their pregnancy to full time. The rules and laws don’t really address the needs of pregnant people, so what we’re trying to do is really build those connections and talk about how we can work collaboratively together.”

It's testament to the NHS, which in its 75th year would likely be treated as a geriatric patient, that its workers and activists, and even leadership retain an appetite to evolve the organisation and fight injustices within it. “I think I’m living proof of [the appetite for change],” says Kyia. “They didn’t have to find the money to create the role that I have, I feel very lucky to have this investment in [improving diverse care in midwifery], I think we have a massively changing scope of practice [because] the world is evolving – we don’t just have women that deliver with us, we have people who are non-binary, it’s getting more and more nuanced in how we define ourselves.

“I just think that the standard of care that we’ve got here is amazing – we struggle and we’re overworked,” she continues. “The NHS functions off of the generosity of its workers, it doesn’t function because we all get paid well or want to work unpaid overtime, or enjoy working 12 and a half hour shifts without a break, none of that is what we’re there for. But we honestly do the best that we can, and we have the most amazing people who work within the NHS.”

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