Addressing racial disparities in women’s health: why grassroots groups matter  

Black and ethnic minority women experience inequalities across their life course, from menstrual health to perinatal mental health, to menopause. These inequities are shaped by several factors, such as stigma, mistrust, and a lack of culturally competent care. Grassroots community groups are at the frontline of the crisis in women’s health, and Leona Letts, our Senior Policy Officer, highlights how their innovative, community-led solutions provide excellent insights and solutions that are crucial in the fight to narrow disparities and improve outcomes for ethnic minority women.

Menstrual health:

Perinatal mental health:

  • Perinatal minority ethnic women are at a higher risk of experiencing depression, anxiety, and Post-Traumatic Stress Disorder (PTSD), compared to White women.

Menopause: 

  • The first UK wide survey on the menopause experiences of Black women found that most women sought help only once symptoms were severe and many described their experiences speaking to a healthcare professional about menopause negative and experienced dismissal, misdiagnosis and being misunderstood

These inequalities across the life course are completely unacceptable and are influenced by several factors. Cultural stigma and taboos (for example around topics like menopause) may prevent some ethnic minority women talking about gynaecological problems or accessing services. Moreover, language barriers, negative provider attitudes, stereotyping, poor access to interpretation services, limited continuity of care also play a role in fuelling ethnic health inequalities faced by racialised women. Low trust, culturally inappropriate care, as well as poor cultural awareness among staff, differences in symptom awareness, cross cultural communication challenges and knowledge gaps in clinicians are further factors that perpetuate inequities faced by racialised women, and impede access to compassionate, culturally competent care.

As evidenced by these entrenched inequalities, there is a clear need for personalised, culturally sensitive and responsive care. The good news is that grassroots organisations are already doing this essential work. Community-led organisations are crucial partners for the NHS and the health system. Such groups  – including Black Women Rising, Amina, and Sister Circle, often act as a bridge between minoritised communities and statutory services. As a trusted voice, they play a crucial role not only in advocating for the needs of minoritised ethnic patients, carers and families but also in delivering services and support themselves.

But what these groups need is more sustainable funding, and to be seen as equal partners in the health system. Their practice shows great promise – but their approaches and interventions ought to be evaluated, scaled, and better integrated into the health system. Ensuring that grassroots groups are well supported, and their expertise is recognised is instrumental to tackling ethnic health inequalities and amplifying their impact. (You can read more about our work to build more inclusive approaches to grant making here: https://nhsrho.org/news/community-grant-fund-launched-to-tackle-health-inequalities/).

One example of this is Cysters, a grassroots community group based in Birmingham  that is led by and for community members, which works nationally. They cover the life course of women’s health (including trans and non-binary communities) and cover menstrual, maternal, menopausal, and mental health, grounded in an intersectional, anti-racist, and community-first approach. Cysters work to address systemic barriers that disproportionately affect marginalised communities.

Cysters is supported by just one single paid member of staff working part time, and a committed group of volunteers, between October 2024 and December 2025, Cysters delivered high-impact, community-led work across the West Midlands and nationally, reaching 500+ people in person. During this time, Cysters also provided instrumental practical support and resources to those unable to afford it, including distributing 10,000 menstrual health products and over 10,000 baby milk support packages across Birmingham and the West Midlands. Evidently, groups like Cysters are doing important work, yet the absence of core funding means the work they do in addressing urgent health inequalities is poorly resourced and its impact is constrained.

Cysters run several initiatives such as:

  • Chronically Creative: arts-based therapy to counteract the isolation and stigma many community members experience. Participants expressed a heightened sense of community and depart feeling uplifted, having found a space to freely discuss their hardships while also embracing resilience. Chronically Creative provides a trusted monthly space for connection, shared learning, and collective voice. It’s facilitated by individuals trained in disability justice and anti-racism.
  • Marginalised and Menopausal: an initiative to tackle health concerns linked to menopause in minoritised communities. This includes conducting research with minoritised communities and organising events to raise awareness of diverse experiences of menopause.
  • Cysters Smear: community engagement to address misconceptions around cervical screening. This is delivered via culturally sensitive drop-in clinics staffed by trained nurses and in collaboration with partners like The Eve Appeal.

Cysters is deeply connected to their community, and have been working closely with them for 14 years. Their consistent track record of putting the service user first, and providing personalised, cultural responsive care, has enabled them to build a deep level of trust with their community members. Whether you trust the health system or not is a key determinant of health that impacts help seeking behaviour and engagement with health services. Groups like Cysters play a key role in helping racialised community members, who too often have encountered discrimination and feel mistrustful of health system to feel seen, understood, and empowered. Yet such groups too often are undervalued and ignored by the health system.

With a focus on in person, affordable and inclusive sessions rooted in lived experience, Cysters run informative, educational sessions and workshops that are varied in format, and take a culturally sensitive approach to health communication. Rooted in a deep understanding of the cultural context of the communities they serve, Cysters educate, inform and empower community members on a range of topics that are often taboo in some racialised communities, and listen to groups to understand their diverse needs. These educational workshops might involve a health professional visit, peer mentoring, or an open space for women to share. Workshops might also include community healing, somatic breathwork, peer support and grief support.

The content will vary, from menstrual health, baby loss, Polycystic Ovary Syndrome (PCOS), or menopause. They might be held in different places of worship like a Gurdwara, a Hindu temple, a mosque, or in a local community centre. While the content and nature of these sessions and workshops might vary, what brings them together is creating safe, curated spaces, where women are listened to and their feedback and perspectives meaningfully shapes the care and support they receive. Cysters hold educational sessions on specific reproductive health conditions at the requests of mother and daughters. Following the horrific rape of a Sikh woman in the West Midlands, women reported to Cysters feeling very frightened. Recognising that feeling safe and bodily autonomy is key to women’s health and women engaging with health services, Cysters organised 3 self-defence classes to boost confidence.

The value of these interventions is immense. Stigma is a significant barrier that impacts racialised women’s health, and health literacy is a determinant of health. Such activities break down barriers by meeting communities where they are.

One service user said of the support she received from Cysters:

“Before finding Cysters, I often felt like I was navigating my health alone. There were so many things I didn’t feel want to talk about, because of cultural expectations, stigma and feeling that healthcare professionals didn’t fully understand what I was going through.

“Finding a community where I could speak openly, without judgement, has made such a difference. It’s not just about accessing information or learning more about my health. It’s about being listened to, meeting people who understand, sharing experiences and realising that I’m not alone and ultimately having some joy and laughs along the way, which I never thought would happen.

“Cysters is so important because sometimes you need someone who understands your experience before you can find the confidence to ask for the support you deserve. I hope they continue to receive the funding and recognition they need, because communities deserve spaces like this.”

Cysters also work to address underrepresentation of marginalised voices in research through academic partnerships. Through co-production with their community members, Cysters has contributed to published papers and peer-reviewed journals while staying rooted in grassroots realities. Whether this is working with Warwick University to map interventions that reduce inequalities or working with Sheffield University to co-create resources on menstruation in Sikh communities, Cysters work to ensure community members are shaping research and compensated for their time.  Given that White people are 64% more likely to have participated in healthcare research, the work Cysters is doing to diversify research is vital to addressing racial inequity in women’s health and advancing our understanding of women’s health across the life course.

There is still work to do when it comes to shifting the dial on ethnic inequities in women’s health. But there is hope. Racialised-led grassroots groups, like Cysters, have shown great resilience in continuing to reach hundreds of people each year, and providing holistic, culturally sensitive care. If we scale up our support, championing and learning from these groups; we will learn so much more about what interventions can work to narrow inequalities, the needs of the communities we serve, and improve health outcomes for minoritised communities.