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This resource padlet has been put together by Chaya Tagore, MNVP Lead for BSW CCG, mother and birth worker.
It is aimed at midwives, maternity healthcare workers, birth workers, parents and anyone working in Maternity Services but may be shared with anyone who would find it useful. Contact:  chaya.tagore@nhs.net

While we make every effort to keep these padlets up to date, we make no warranties or representations that the information will be:

current

accurate

secure

complete

free from bugs or viruses

As an MNVP, we are not liable for any loss or damage that may come from using these padlets. We are unable to endorse the information held on third party websites, it is for information only.

www.bswmaternityvoices.org.uk

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Bath & North East Somerset, Swindon and Wiltshire (BSW) Maternity Voices Partnership Plus

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​While we make every effort to keep these padlets up to date, we make no warranties or representations that the information will be:

As an MVP, we are not liable for any loss or damage that may come from using these padlets. We are unable to endorse the information held on third party websites, it is for information only.

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Resources - Bath North East Somerset, Swindon and Wiltshire Maternity Voices Partnership Plus

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​While we make every effort to keep these padlets up to date, we make no warranties or representations that the information will be: As an MVP, we are not liable for any loss or damage that may come from using these padlets.

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2.5 minutes

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15 minutes

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Not all superheroes wear capes - you have the power to change the world | Nova Reid | TEDxFrankfurt

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3 minutes of explanation

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Aamer Rahman (Fear of a Brown Planet) - Reverse Racism

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5 minutes

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James Corden Gets a Lesson on White Privilege

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Race and Racism - Camara Jones, 20 minutes

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Allegories on race and racism | Camara Jones | TEDxEmory

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Miquita Oliver talks about her experience with racism

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Miquita Oliver talks about her experience with racism

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3 minute video

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bbc sounds maquita on racism - Search Videos

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Black, Asian & Minority Ethnic women and Breastfeeding

Why Black Breastfeeding week is important (55 minutes)

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Baby Friendly Initiative | Kimberly Seals Allers - 2019 Baby Friendly Annual Conference

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Our ability to treat and prevent many diseases would not be the same without cells taken from a young woman called Henrietta Lacks.

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How one woman's 'immortal' cells changed the world - BBC Ideas

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In 1951, Henrietta Lacks died of cancer. However, cells taken from her body continued to multiply after her death, helping to save millions of lives.

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No. You Cannot Touch My Hair! | Mena Fombo | TEDxBristol

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No. You Cannot Touch My Hair! | Mena Fombo | TEDxBristol

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16 minute Ted Talk

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No. You Cannot Touch My Hair! | Mena Fombo | TEDxBristol

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Women's Health, Migrant health guide for healthcare professionals

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Women's Health, Migrant health guide for healthcare professionals

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Main messages

Support women to access sexual health services and maternity care, and to understand their entitlements to care.

Be aware of possible religious and cultural sensitivities when discussing sexual and reproductive matters.

Where language is a barrier in discussing sexual or reproductive matters, offer a female interpreter. It is inappropriate to use children as interpreters for adults, particularly when discussing intimate concerns. Have arrangements in place for one-to-one disclosure, and to avoid discussing sensitive topics in front of children.

If you have concerns that a patient may be a victim of trafficking, you can contact the Modern Slavery Helpline.

Those who have experienced forced migration are at increased risk of violence against women and girls. Consider trauma-informed approaches to service provision, and ensure appropriate referrals are made to address the physical and mental health needs of those who have experienced sexual and gender-based violence.

Some cultural practices may expose women to non-infectious environmental hazards.

Use the country pages of the migrant health guide to find out more about sexual and reproductive health indicators for women from specific countries.

Sexual and reproductive health

Different religions and cultures have different beliefs and practices concerning menstruation, pregnancy and childbirth. These can affect a patient's understanding of and compliance with healthcare professionals' recommendations.

Explore the individual's beliefs and understanding. If an individual experiences language barriers, ensure they have access to professional interpreting and translation services.

Enquire about past history of cervical and breast screening (where age appropriate) and provide information about the NHS routine cervical screening and breast screening programmes. Offer girls aged up to 18 immunisation against human papillomavirus (HPV).

A sexual history is an important part of an overall health assessment. Consider whether the patient may require a full sexual health screen for sexually transmitted infections on the basis of country of origin and sexual history.

Sexual health promotion including safer sex advice is important to address with all sexually active people.

Ask migrant women if they feel comfortable to discuss family planning needs as this can be a sensitive topic in some cultures.

Violence against women and girls

Violence against women and girls ( VAWG), which is also commonly referred to as sexual and gender-based violence ( SGBV), includes:

rape and sexual assault

physical, psychological or emotional violence

forced marriage

forced sex work

female genital mutilation (FGM)

denial of resources, opportunities, services and freedom of movement on the basis of socially ascribed gender roles and norms

VAWG can lead to immediate and long-term physical and mental health problems, sexually transmitted infections, and trauma.

Women, especially those who have experienced forced migration, are at increased risk of VAWG. There is evidence of high levels of VAWG prior to, during and following forced migration journeys, and under-reporting of VAWG by survivors is common. Research suggests that SGBV can increase after migration to destination countries like the UK. Perpetrators include family, friends, community members and persons in authority.

The SEREDA project found that while some survivors access healthcare in the UK, the majority receive no support.

It can be challenging for women to talk about experiences of violence. Reasons for this include:

survivors' lack of awareness of the types of support services that are available to them, and that disclosure is needed to determine eligibility to these services

re-traumatisation

fear of breach of confidentiality

fear of disclosure impacting on immigration applications (for example, where the main visa applicant is the perpetrator)

fear of losing family and community relationships as a result of disclosure, including fear of removal of children by social services

ongoing coercive relationships with perpetrator(s)

lack of continuity of care and inability to build trusting relationships with service providers (for example, in light of insecure immigration status or dispersal policies)

mistrust of government officials and services, particularly when women feel that officials and service providers do not believe what they have disclosed

previous experiences of discrimination in public institutions

Healthcare professionals should:

facilitate safe space (one-to-one if possible) for women to disclose their experiences of VAWG

avoid discussing sensitive topics in front of children

work with female professional interpreters where there are language barriers, and understand that a person with good conversational fluency in English may not be able to understand, discuss or read health-related information proficiently in English

brief the interpreter thoroughly about the sensitive and traumatic topics that may be disclosed in the session, and the possibility of safeguarding concerns that may arise

assess for safeguarding concerns and take appropriate actions to prevent harm (refer to the NHS safeguarding policy and the NHS safeguarding app for more information)

consider trauma-informed approaches and survivor-centred approaches to service provision

recognise signs of SGBV exposure, such as physical marks and mental health symptoms

consider development of protocols to identify potential groups at risk of SGBV

ensure appropriate referrals are made to address physical and mental health needs

where appropriate, refer or encourage self-referral to sexual assault referral centres (SARCs) that offer confidential and non-judgmental support to victims and survivors of sexual assault and abuse (referrals to SARC is not associated with reporting to the police, unless an individual wishes to do so)

provide information about available support services to those affected by VAWG

build awareness about VAWG among peers and support staff to improve communication with survivors

support women to register for GP services

Charges for sexual and reproductive health services

The following services are free of charge to all individuals regardless of immigration status:

services provided for routine screening, diagnosis, treatment and vaccination for sexually transmitted infections

family planning services, including contraceptive services (does not include termination of pregnancy or infertility treatment)

services for treating a physical or mental condition caused by torture, female genital mutilation, domestic violence or sexual violence (as long as the individual did not travel to the UK for the purpose of seeking this treatment) - this includes maternity services (antenatal, perinatal and postpartum treatment) needed as a consequence of sexual violence or female genital mutilation.

Pregnancy and maternity care

Inform women who are pregnant or planning a pregnancy of their rights to maternity care. Migrant women may have different expectations of maternity care from their country of origin.

Explain the NHS system of antenatal care (including routine antenatal screening) and postnatal care (including health visiting services).

Support women to register for GP services.

Encourage anyone who is eligible for the Healthy Start scheme to apply.

If a woman is pregnant or has given birth in the last 12 months and has a valid maternity exemption certificate, they are entitled to free NHS dental treatment and free NHS prescriptions. Help individuals to apply for this certificate.

Some pregnant women may choose to travel back to their country of origin to be with family for their delivery. Refer to the latest foreign travel advice, NaTHNaC's pregnancy factsheet and NHS Choices advice on travelling in pregnancy. Different airlines have different rules about flying in pregnancy and the woman should be advised to check both with the airline she intends to fly with, and with her insurance company. She may need a letter from her GP stating she is fit to fly.

Infection and disease before, during and after pregnancy

Offer serological testing for Chagas disease to Latin American women of child-bearing age and those who are pregnant. Detection during pre-conception testing can reduce risk of vertical transmission to infants.

HTLV-1 and HTLV-2 can be transmitted from mother to child mainly through breastfeeding but also during pregnancy and birth. Consider serological testing for HTLV in pregnant or breastfeeding migrant women from endemic countries and regions:

Caribbean

South America

Romania

Iran

Africa

Japan

Melanesia

Australia (Aboriginal and Torres Strait Islander populations)

For further information on testing for HTLV, and how to access specialist HTLV services, refer to the National Centre for Human Retrovirology website.

Listeria infections have been found to be more common in pregnancy among ethnic minority groups in England and Wales. Refer to NHS listeriosis guidance about what advice to give to pregnant women.

Charges for maternity care

While charges may apply for some migrants, maternity care should always be provided and should not be denied or delayed on the basis of immigration status or ability to pay. This includes antenatal care, care in childbirth, postnatal care for the mother and baby. Maternity Action provides guidance on when charges apply for maternity care.

Maternity care should never be refused or delayed even if an individual has not agreed to pay charges, cannot afford to pay, or there is a query about whether an individual is chargeable. If a woman is unable to pay for maternity care, they should inform the NHS trust. Trusts have a duty to continue maternity care and discuss payment options, such as repayment plans.

NHS trusts have discretion to write-off debts when it is not cost-effective to pursue. However, debts cannot be waived or cancelled. They will remain in a trust's records and can be recovered if an individual's ability to pay changes.

Resources

Pregnancy and maternity care

The Royal College of Midwives has produced Caring for vulnerable migrant women (PDF, 793KB) which is a pocket guide for midwives and maternity support workers.

Maternity Action is a national charity working to end inequality and promote the health and well-being of all pregnant women, their partners and children. They provide advice on entitlements to maternity care for migrants.

NHS Choices: pregnancy and testing for infections in pregnancy.

Routine antenatal screening from Patient.info.

Screening tests for you and your baby in English, easy read and 12 other languages.

NaTHNaC advice on travel and pregnancy.

Royal College of Obstetricians and Gynaecologists: Malaria and pregnancy.

Breastfeeding: Off to the best start.

Healthy Start information for health professionals.

Food Standards Agency advice on listeria.

Sexual and reproductive health

Family Planning Association guide to contraception.

NHS Cervical Screening Programme leaflets for patients.

Breast screening programme leaflets for patients.

Genital warts and human papillomavirus ( HPV) guidance, data and analysis.

VAWG, trafficking, abuse, human rights

See the guidance on forced marriage for professionals protecting, advising, and supporting victims.

Individuals can contact the forced marriage unit (FMU) if they are trying to stop a forced marriage or need help leaving a forced marriage.

Suspected human trafficking and modern slavery can be reported to the National Crime Agency's Modern Slavery Helpline.

The Asian women, domestic violence and mental health toolkit by EACH (Ethnic Alcohol Counselling in Hounslow) provides background information on Asian women's experiences of domestic violence, its impact on their health, and how health professionals can respond.

Southall Black Sisters offer specialist support, advocacy and information to Asian and African-Caribbean women suffering abuse.

Imkaan is a women's organisation dedicated to addressing violence against Black and minority ethnic women and girls.

Muslim Women's Network offers a national specialist faith and culturally sensitive helpline providing information, guidance and referrals for those at risk of abuse to women of faith and no faith.

Opoka provides a national helpline for Polish women living in the UK.

Refugee Women Connect offers an extensive outreach programme, emotional and practical support and advocacy initiatives.

Refuge runs a number of culturally specific outreach and advocacy programmes.

FORWARD supports African women and girls in the UK who have been affected by violence. They also provide training for professionals and work collaboratively with frontline professionals to provide accessible services to women and girls.

The National FGM Centre supports children and young people affected by FGM, breast flattening and child abuse linked to faith or belief. It has a free online knowledge hub, a directory of FGM services available in the UK, and offers professional training and development.

Guidance on female genital mutilation from the migrant health guide and the NHS.

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Support women to access sexual health services and maternity care, and to understand their entitlements to care. Be aware of possible religious and cultural sensitivities when discussing sexual and reproductive matters. Where language is a barrier in discussing sexual or reproductive matters, offer a female interpreter.

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Association of South Asian Midwives - UK

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Association of South Asian Midwives - UK

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Collaborate, Create, Research, Support

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Association of South Asian Midwives (ASAM) is a platform for the South Asian Midwifery Workforce and birthing community. The company was founded by three midwives, Nafiza, Benash and Sundas after discussions relating to issues witnessed, and situations experienced in the workplace and within th

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Journal of medical ethics- what is cultural safety?

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Journal of medical ethics- what is cultural safety?

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What is Cultural Safety and how could it dissolve structural racism in the UK?

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By Amali U Lokugamage Elizabeth(Liz) Rix, Tania Fleming, Tanvi Khetan, Alice Meredith, and Carolyn Ruth Hastie.

The global pandemic and the BlackLivesMatter movement have highlighted systemic racism as a driver of health inequities for ethnic minorities in the United Kingdom. So how should we upend this pervasive discrimination and critically yet constructively examine this from a decolonial perspective? This collection of authors from the UK, New Zealand and Australia have co-produced a Cultural Safety framework to address structural iatrogenesis where patients are harmed by unconscious or conscious racist power imbalances in the bureaucratic and cultural systems within healthcare systems, including those systems originally intended to help them.

Health inequities are known to be directly linked to colonisation by the British Empire and the enduring legacy of individual and structural racism. Cultural Safety's genesis was in New Zealand, created and developed in the 1990s by Māori nurse and educator, Irihapiti Ramsden. The shared experiences of all Indigenous Peoples colonised by Europeans have prompted the expansion of the Cultural Safety educational framework to Indigenous Peoples and other marginalised ethnic minority populations globally. The Australian perspective in particular reveals parallels with the UK in the context of both countries' social and political landscapes, including hidden colonial histories, healthcare inequities and racial discrimination. Whilst the UK context and history of racial discrimination are literally 'poles' apart from that experienced by Māori and Aboriginal Peoples in the Antipodes, outcomes for those suffering individual and systemic racism when accessing healthcare resonate strongly.

Cultural Safety differs from other frameworks (such as cultural competence) for developing healthcare practitioners' cross-cultural skills in a number of crucial areas which we discuss in our article Translating Cultural Safety to the UK. Critical self-reflection on one's own culture, power, and privilege, and addressing inherent power imbalances within healthcare sets Cultural Safety apart as a decolonising and human rights focused framework. Cultural Safety is also crucial to undoing discrimination and critical conversation about racism in our health institutions. Translating Cultural Safety to the UK therefore is a form of reverse innovation from people who were colonised back to their previous colonisers to address racial injustice in healthcare. This means that the ex-British empire could humbly learn from others who have been subjugated and subordinated about solutions that have arisen and work well from grassroots experts. From this trajectory we can address knowledge/epistemic blind spots in healthcare structures arising from unconscious bias, power imbalances and privilege known to have been set up and ingrained during the origins of biomedicine in colonial times.

For the translation of Cultural Safety to the UK, we have developed an infographic to assist readers (graphic above). We use a Cultural Safety Tree model as both a practical taxonomy but also as a metaphor which symbolises and resonates with its Indigenous ideals.

Person-centred care, staff reflexivity, structural reflexivity and listening to the voices of the recipients of healthcare are the crucial roots to this model. Organisations can explore the other aspects representing the tree trunk and the multiplicity of possible strategies and actions (representing the flowers, leaves and fruit). We acknowledge that the translation of CS, will require dovetailing and tailoring with pre-existing healthcare human rights, ethics, undoing racism and decolonial activities within the UK. Actively engaging with this model will lead to dismantling the underlying discrimination and unconscious biases that have become embedded as structural racism within policy, systems, and practice. A practical example of this in the context of the UK, is the historical absence of teaching materials for diagnosis in dark skin tones, with resources universally focused on white skins. These omissions are in effect, the vehicles of misdiagnosis and potentially death. A clear and concerning example of this is not teaching medical, midwifery, and nursing students how to diagnose cyanosis in a black person.

Denial of the existence of structural racism in the UK by the recent Sewell report has been condemned and rejected by many experts and contradicts scholarly outputs in this context. The evidence of structural racism is undeniable, despite the Sewell report attempting to shift the focus from racism to geography, family, culture, and religion. Educating healthcare providers to work in a Culturally Safe way in the UK will require further research and policy development. Doing so will provide an important steppingstone in overturning structural racism within the NHS and beyond.

Paper Title: Translating Cultural Safety to the UK
Affiliations:
1 Department of Clinical and Professional Practice, University College London Medical

2 School, London, UKDepartment of Women's Health, Whittington Health NHS Trust, London, UK

3 Faculty of Health, Southern Cross University, Gold Coast Campus, Bilinga, Queensland, Australia

4 School of Midwifery, Auckland University of Technology, Auckland, New Zealand

5 University College London Medical School Alumni, University College London, London, UK

6 Department of Nursing and Midwifery, Griffith University Faculty of Health, Gold Coast, Queensland, Australia

Declaration of interests: AUL is on the Board of Directors of the International MotherBaby Childbirth Organisation and a member of a Patient and Public Voice Partners advisory group within NHS England (which are both voluntary and non-renumerated roles). TF, ER, AM, TK, CH none declared.
Social media accounts
@DocAmali, https://www.linkedin.com/in/amali-lokugamage-64097b43/

@tania_fleming16, https://www.linkedin.com/in/tania-fleming-2b9b82122/
@KhetanTanvi
Liz Rix https://www.linkedin.com/in/liz-rix-870b9231/

@CarolynHastie, https://www.linkedin.com/in/carolyn-ruth-hastie-123a8910/

(Visited 167 times, 99 visits today)

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What is Cultural Safety and how could it dissolve structural racism in the UK? | Journal of Medical Ethics blog

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By Amali U Lokugamage Elizabeth(Liz) Rix, Tania Fleming, Tanvi Khetan, Alice Meredith, and Carolyn Ruth Hastie. The global pandemic and the BlackLivesMatter movement have highlighted systemic racism as a driver of health inequities for ethnic minorities in the United Kingdom. So how should we upend this pervasive discrimination and critically yet constructively examine this from [...]Read More...

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Maternity care in the UK (2021) 26 minutes

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NHS South East Clinical Delivery and Networks

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"It's ok to ask" Maternity Cultural curiosity films

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"It's ok to ask" Maternity Cultural curiosity films

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It’s OK to ask is a project that debunks the myths around discussions on ethnicity, gender identity and disability for fear of offending, and aims to improve the maternity experience for all.

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It’s OK to Ask – Maternity’s ground-breaking equity films

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Maternity services across Suffolk and north east Essex have responded to a recent national inquiry into racial injustice and human rights in maternity care by launching a ground-breaking new initiative which aims to eradicate health inequalities for diverse communities. It’s OK to ask is a project that debunks the myths around discussions on ethnicity, […]

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Breastfeeding support from La Leche League

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Breastfeeding support from La Leche League

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Telephone support and face to face groups across UK. Please see our MVP Infant Feeding Padlet for details.

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Racial disparities in healthcare are evident in the UK, and the world of breastfeeding support is sadly no stranger to systemic racism. Not only are maternal and infant mortality rates in this country shockingly higher among Women of Colour than among White women, but there are also structural barriers preventing Black and Brown families from accessing breastfeeding information and support.

According to the 2020 MBRRACE report, Black women in the UK are over four times more likely to die as a result of pregnancy complications than White women, while women of mixed ethnicity and Asian women are respectively three times and almost twice more likely.[1] These disparities have become particularly evident within the context of the COVID-19 pandemic, with 88% of the women who died of the virus during the third trimester of pregnancy between March and May 2020 being from Black and minority ethnic groups. [2] Infant mortality statistics are equally shocking: 2013 data collected by the UK Office for National Statistics shows that Pakistani, Black Caribbean and Black African babies had the highest infant mortality rates (6.7, 6.6 and 6.3 deaths per 1,000 live births respectively) compared to White British and White Other babies (3.3 and 2.6 deaths per 1,000 live births).[3]

Although, according to the UK Infant Feeding Survey 2010,[4] Black mothers actually have higher breastfeeding initiation rates than White mothers (96% vs. 79%), as well as higher breastfeeding rates at six weeks and six months (89% vs. 65% and 64% vs. 40% respectively), being able to access adequate breastfeeding support could further improve these rates, resulting in better short- and long-term health outcomes for Black mothers and babies. Breastfeeding could help save babies' lives,[5] and this is why it's so important that the support offered by breastfeeding organisations like LLLGB is accessible, inclusive, equitable and culturally relevant.

We are acutely aware that our lack of racial diversity and insufficient attention to cultural sensitivity may have created an unwelcoming environment for Women of Colour in need of breastfeeding support. We also know that socio-economic factors can have an impact on the ability of families to access our services and that Black and Brown women are often disproportionately affected. Our failure to understand this in the past has contributed to perpetuating systems that discriminate against People of Colour and, as an organisation, we stand accountable for that.

We are actively working to instigate change - amongst other things, by supporting our local groups to remove barriers that might prevent mothers from attending our meetings, and ensuring that all skin descriptions on our website are representative and not excluding - yet we recognise that we have a lot more work to do to fully address these issues. We are taking our pursuit of antiracism very seriously and we are committed to becoming a genuinely inclusive organisation able to offer culturally sensitive breastfeeding support to families of all backgrounds and skin colours.

We are listening, even when criticism feels uncomfortable. We'd really appreciate hearing about your past interactions with LLLGB, as well as your suggestions on how to improve the way we support you. You can submit your feedback by email here.

You can access our Equity and Representation Policy here.

Resources
Podcasts/Presentations Conversations with Nova Reid: More than just birth, Black Maternal mortality, toxic kindness and uncovering medical racism with Mars Lord Kimberley Seals Allers: The Lived Experience of BAME Women in Birth and Breastfeeding - UNICEF Baby Friendly 2019 Annual Conference Presentation Decolonizing Breastfeeding with Kimberly Seals Allers Ruth Dennison: Why Black Breastfeeding Week? UK event 2019 Part 1 Ruth Dennison: Why Black Breastfeeding Week? UK event 2019 Part 2 Ruth Dennison: Black Breastfeeding Week. UK event 2019 Part 3 Ruth Dennison: Breastfeeding in the Black Community: Pregnancy, Birth and Beyond Ruth Dennison: Black Breastfeeding Week 2017 Nekisha Killings: How Did I Miss That?: Breast Assessment and Non-White Skin Tones Black Mamas Matter Alliance: Centering Black Mamas to Revive, Restore & Reclaim Their Breastfeeding Power Evidence-Based Birth Podcast: Addressing Maternity Bias and Infant Care with Irth app Founder, Kimberly Seals Allers The King's Fund podcast: Professor David Williams on racism, discrimination and the impact they have on health Professor Irena Papadopoulos: Developing Cultural Competence Good Ancestor Podcast by Layla Saad: Candice Brathwaite on Being a Black British Mother Good Ancestor Podcast by Layla Saad: Nova Reid on Anti-Racism and Courageous Courage Good Ancestor Podcast by Layla Saad: Tiffany Jewell on Anti-Bias Anti-Racist Education Good Ancestor Podcast by Layla Saad: Kimberly Seals Allers on Birth Without Bias Ibram X Kendi: The difference between being "not racist" and antiracist - TED 2020 Nova Reid: Not all superheroes wear capes - how you have the power to change the world - TED 2020 The Future is Beautiful podcast by Amisha Ghadiali: Nova Reid on Anti-Racism, Allyship and Curiosity About Race with Reni Eddo-Lodge Akala: Everyday racism: what should we do? Talking Race with Young Children - NPR podcast Dope Black Mums: The Mixed Race Experience Breastfeeding as food justice - Black Breastfeeding Week UK Reports/Articles/Guides Lee, Y.I and Baker, S. Understanding the Racialized Breastfeeding Experiences Among Black Millennials. Breastfeeding Medicine, 2021; 16 (6): 481-486. Asiodu, I.V. et al. Achieving Breastfeeding Equity and Justice in Black Communities: Past, Present, and Future. Breastfeeding Medicine, 2021; 16 (6): 447-451. Davis, C. et a. Racism and Resistance: A Qualitative Study of Bias As a Barrier to Breastfeeding. Breastfeeding Medicine, 2021; 16 (6): 471-480. Pithia, N. et al. Race and Ethnicity and Exclusive Breastfeeding Success. Breastfeeding Medicine, 2021; 16 (5). Lokugamage, A.U. et al. Translating Cultural Safety to the UK. Journal of Medical Ethics, July 2021. MBRRACE-UK. Saving Lives, Improving Mothers' Care - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2016-18. December 2020. MBRRACE-UK. Saving Lives, Improving Mothers' Care - Rapid Report: Learning from SARS-CoV-2-related and associated maternal deaths in the UK. March-May 2020. Lokugamage, A.U. and Meredith, A. Women from ethnic minorities face endemic structural racism when seeking and accessing healthcare. The BMJ Opinion, March 2020. Firdous, T. et al. Muslim women's experiences of maternity services in the UK: qualitative systematic review and thematic synthesis. BMC Pregnancy and Childbirth, 2020.
McFadden, A. et al. Does cultural context make a difference to women's experiences of maternity care? A qualitative study comparing the perspectives of breast‐feeding women of Bangladeshi origin and health practitioners. Health Expectations, 2013; 16 (4): e124-e135.
Anekwe, L. Ethnic disparities in maternal care. BMJ, 2020.
Griswold, M.K. et al. Experiences of Racism and Breastfeeding Initiation and Duration Among First-Time Mothers of the Black Women's Health Study. J Racial Ethn Health Disparities, 2018; 5(6): 1180-1191. Anstey, E.H. et al. Breastfeeding and Breast Cancer Risk Reduction: Implications for Black Mothers. Am J Prev Med, 2017; 53 (3 Suppl 1): S40-S46. Heathcock, R. Cultural awareness and maternity care. Perspective, March 2016. Oakley, L.L. et al. Factors associated with breastfeeding in England: an analysis by primary care trust. BMJ, 2013; 3 (6). Daglas, M. and Antoniou, E. Cultural views and practices related to breastfeeding. Health Science Journal, 2012; 6 (2). Ingram, J. et al. Exploring the Barriers to Exclusive Breastfeeding in Black and Minority Ethnic Groups and Young Mothers in the UK. Maternal Child Nutrition, 2008; 4(3): 171-80. Kelly, Y.J. et al. Racial/Ethnic Differences in Breastfeeding Initiation and Continuation in the United Kingdom and Comparison With Findings in the United States. Pediatrics, 2006; 118 (5): e1428-35. Griffiths, l.J. and Tate, A.R. The contribution of parental and community ethnicity to breastfeeding practices: evidence from the Millennium Cohort Study. International Journal of Epidemiology, 2005; 34 (6): 1378-1386 Kimberley Seals Allers: Top Five Reasons We Need A Black Breastfeeding Week Ruth Dennison: Why Black Breastfeeding Week? Emma Pickett: A Closer Look at Cultural Issues Surrounding Breastfeeding. Alicia Burnett: 'We Need to Talk about Race': A reflection on the RCOG's International Women's Day conference La Leche League International: Black Breastfeeding Week Celebrations. Breastfeeding Today, October 2019. Zeenath Uddin: As a midwife I see racism towards BAME mothers and NHS workers alike - enough is enough Child of our Time: Breastfeeding and Ethnicity Boujie Media Blog: What is White Privilege Nova Reid Free Anti-racism Guide Guide to Allyship National Museum of African American History & Culture: Talking About Race Faima Bakar Metro article: The way you define racism may stop you from seeing it - so what definition do you hold? Natalie Morris Metro article - The BAME debate: Why terminology matters when we're talking about race. Breastfeeding as a Black woman in modern day UK Black Women Do Breastfeed The Melanated Mammary Atlas Books
How to Be an Anti-Racist by Ibram X Kendi
Me & White Supremacy by Layla Saad
Why I'm No Longer Talking to White People About Race by Reni Eddo-Lodge
I Am Not Your Baby Mother by Candice Brathwaite
So you want to talk about race by Ijeoma Oluo
Black and British: A Forgotten History by David Olusoga
Natives by Akala
The Good Immigrant by Nikesh Shukla
This Book is Anti-Racist: 20 Lessons on How to Wake Up, Take Action, and Do the Work by Tiffany Jewell
Reproductive Injustice: Racism, Pregnancy, and Premature Birth by Dána-Ain Davis
Reproductive Justice by Loretta Ross and Rickie Solinger
Battling Over Birth: Black Women and the Maternal Health Care Crisis by Helen Arega, Dantia Hudson and Linda Jones
Free to Breastfeed: Voices of Black Mothers by Jeanine Logan and Anayah Sangodele-Ayoka
What White People Can Do Next: From Allyship to Coalition by Emma Dabiri
The Good Ally by Nova Reid
Stamped: Racism, Antiracism, and You by Jason Reynolds and Ibram X Kendi
Anti-Racist Baby by Ibram X Kendi

List of books to facilitate conversation around race with children by Dope Black Mums ( https://www.dopeblackmums.co.uk/lets-talk-about-race)

References

[1] MBRRACE-UK. Saving Lives, Improving Mothers' Care - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2016-18. December 2020.
https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/maternal-report-2020/MBRRACE-UK_Maternal_Report_Dec_2020_v10.pdf

[2] MBRRACE-UK. Saving Lives, Improving Mothers' Care - Rapid Report: Learning from SARS-CoV-2-related and associated maternal deaths in the UK. March-May 2020. https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/MBRRACE-UK_Maternal_Report_2020_v10_FINAL.pdf

[3] UK Office for National Statistics. Pregnancy and ethnic factors influencing births and infant mortality: 2013. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/causesofdeath/bulletins/pregnancyandethnicfactorsinfluencingbirthsandinfantmortality/2015-10-14

[4] Health and Social Care Information Centre, IFF Research. Infant Feeding Survey 2010. https://sp.ukdataservice.ac.uk/doc/7281/mrdoc/pdf/7281_ifs-uk-2010_report.pdf

[5] Victora C.G. et al. Breastfeeding in the 21st century: epidemiology, mechanisms, and lifelong effect. Lancet 2016; 387: 475-90.

Originally written by Eva Williams and Leaders of LLLGB, August 2020. Updated August 2021.

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In pursuit of equitable breastfeeding support - La Leche League GB

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Racial disparities in healthcare are evident in the UK, and the world of breastfeeding support is sadly no stranger to systemic racism. Not only are maternal and infant mortality rates in this country shockingly higher among Women of Colour than among White women, but there are also structural barriers preventing Black and Brown families from [...]

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A group for mothers and their partners of ethnic minority backgrounds. This group is dedicated to all things related to pregnancy, childbirth and the post birth period- with an emphasis on maintaining and improving maternal mental well being

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Short amusing video (2 minutes, contains swearing)

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Vidura Bandara Rajapaksa on Instagram: "3."

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168K likes, 1,256 comments - vidurabandararajapaksa on February 28, 2025: "3.". 

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View this post on Instagram

A post shared by Vidura Bandara Rajapaksa (@vidurabandararajapaksa)

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Black Mothers Matter (Bristol based organisation)

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Black Mothers Matter (Bristol based organisation)

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Resources, a platform and safe space for black mothers to get information and support on the issues face by them during pregnancy and the first year after birth

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Postnatal Support

Pairing mothers with mental health advocates, health visitors and other professionals as required, free of charge for the first year following birth

Networks and friendship

Bringing mothers together to share experiences and develop meaningful relationships.

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Pairing mothers with mental health advocates, health visitors and other professionals as required, free of charge for the first year following birth Bringing mothers together to share experiences and develop meaningful relationships.

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A resource for maternity and health care providers

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"In a world where the majority of breasts and nipples are some shade of brown, we cannot afford to treat white skin as the default in our practice."

- Nekisha Killings, MPH, IBCLC

Founder of The Melanated Mammary Atlas®

Partners helping us #normalizebrownbreasts

The Melanated Mammary Atlas® improves care for the underserved by broadening the health professional knowledge base in real-time, one image at a time.

Re-envisioning diagnostics. Transforming support. Normalizing brown breasts.

We aim to normalize how breast conditions manifest on patients of color. The more you see, the better you can support.

The Atlas

The Melanated Mammary Atlas® is your portal to a world of images displaying mammary related conditions on Asian, Indigenous, Black and Brown folks. We feature the first and only cache of images of this type available for viewing and constantly updated by health professionals and the public.

Who is this for?

- Lactation Specialists

- Midwives and Doulas

- Family Practitioners

- ObGyns

- Dermatologists
- Oncologists

- Aspiring Health professionals

- Any Provider who works with breasts/chests

"Indeed, if we are to truly develop an inclusive curriculum, appropriate representation must be given to all racial groups. The shortfall in representation in medical curricula is an important contributor to racial inequality in health-care experience, treatment, and patient outcomes."

Contribute an Image to The Melanated Mammary Atlas®

Our image upload tool is available to anyone who has relevant images to share. Images are input using key descriptors that will ensure accurate and robust search results. Each image is also accompanied by a case brief further detailing how the condition was recognized and treated.

We seek an equitable future of healthcare that normalizes a diverse representation of brown skin.

Subscribe

$9 /mo

Base rate

"Pay What You Want" model

Allows for additional contributions

Grants access to all features

Subject to verification

Donate

contribute

any amount

Support the movement to normalize brown breasts® by making a tax-deductible donation to Lioness Lactation Cares through our fiscal sponsor - F&L Organizational Support Services.

Community-based philanthropy

Our "pay what you want" pricing model allows for members to commit to monthly contributions above the base subscription rate. A portion of additional contributions will go back into communities whose families are most impacted by health inequities.

This isn't a moment: it's a movement.

Join the movement to normalize brown breasts® today.

Breast conditions are not shown on dark skin in most textbooks, and as a result, many health professionals are unaware of how differently some conditions present on more deeply melanated skin.

The Melanated Mammary Atlas® was born out of a need. The sad truth is a dearth of images exists in representation of breast conditions on melanated skin in health education. By and large, the images that aspiring medical professionals see during their training are of fair skinned breasts with pink nipples. Not only is this inconsistent with the pigmentation of most of the people on this planet, it creates a gap in acumen that shows up in the care and assessment of patients of color.

Necessity is the mother of invention.

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The Melanated Mammary Atlas | Health Movement

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Health movement to normalize diversity in breast healthcare and education. The Melanated Mammary Atlas™ improves care for the underserved by broadening the health professional knowledge base in real-time, one image at a time.

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Resources in multiple languages

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MBRRACE - Mothers and Babies, Reducing Risks through Audits and Confidential Enquiries across the UK

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MBRRACE - Mothers and Babies, Reducing Risks through Audits and Confidential Enquiries across the UK

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Reports are available to download/view

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MBRRACE-UK: Saving Lives, Improving Mothers' Care

Rapid report: Learning from SARS-CoV-2-related and associated maternal deaths in the UK March-May 2020

MBRRACE-UK is pleased to announce the publication of the MBRRACE-UK: Saving Lives Improving Mothers' Care rapid report on SARS-CoV-2-related and associated maternal deaths 2020. This report covers the lessons learned to inform care from rapid reviews of the care of women who died with SARS-CoV-2 infection or from mental health-related causes or domestic violence between March and May 2020.

Rapid report 2021: Learning from SARS-CoV-2-related and associated maternal deaths in the UK June 2020 - March 2021

MBRRACE-UK Perinatal Confidential Enquiry: Stillbirths and Neonatal Deaths in Twin Pregnancies

MBRRACE-UK is pleased to announce the publication on the 14th January 2021 of the MBRRACE-UK Perinatal Confidential Enquiry of Stillbirths and Neonatal Deaths in Twin Pregnancies report for 2020.

This report contains illustrative vignettes which are taken from real life events. The vignettes are used to illustrate single aspects of care and are not intended to describe all the care provided to individual mothers and their babies. The vignettes are often a combination of events from the care of more than one mother and her babies and are described such that it is not possible to identify the individuals involved.

We are pleased to be able to let you know that printed copies of the 'MBRRACE-UK: Saving Lives, Improving Mothers' Care 2020: Lessons to inform maternity care from the UK and Ireland Confidential Enquiries in Maternal Death and Morbidity 2016-18' published on the 14th January 2021 are now available to purchase from our online store for a price of £6 per copy inc VAT and postage.
Buy my copy of the printed report now!
MBRRACE-UK publishes three sets of reports:

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The National Perinatal Epidemiology Unit (NPEU) is a multidisciplinary research unit based at the University of Oxford. Our work involves running randomised controlled trials, national surveillance programmes and surveys, confidential enquiries, aetiological studies and a disease register. The results of our research sit at the nexus of public and population health sciences, clinical care and health policy development.

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Thought provoking and action inspiring resource for birth workers

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Deck of 10 cards (3 Stop,3 Look, 3 Listen and 1 Remember).
Cards measure 9x6.5 cm and are kept together by a key ring so that they can easily be kept attached to a belt, a lanyard, key ring etc.

Learn more about this item

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Deck of 10 cards (3 Stop,3 Look, 3 Listen and 1 Remember). Cards measure 9x6.5 cm and are kept together by a key ring so that they can easily be kept attached to a belt, a lanyard, key ring etc.

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British historian - books to read and BBC documentaries to watch

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Why black women are not engaging in research

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Firstly, the terms in itself I find quite humorous. if someone was to ask me the question as to why it is hard to reach and engage with a Black mother, like myself as a service user for research purposes, my simple response would be, it depends who is asking? If you are a researcher who has no connection to the community and attempts to have no meaningful engagement, and is solely motivated to use our networks, knowledge and experiences to gain funding to write a swanky publication, be invited to speak at prestigious institutions about the "ground breaking findings" uncovered on the back of our lived experiences, with a few tokenistic gestures thrown into the mix, to then disappear into the ether without any attempt to actually act on the findings or champion our causes, then the simple answer is you would have better luck flying to Mars on a paper plane.

These networks are key to untapping engagement within the Black community, but they need to know the research is not performative and is really going to lead to meaningful change before they can endorse or get behind it, and if these networks do get behind then they need to be adequately funded, resourced and recognised.

Agnes Agyepong

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Service user involvement in maternity and perinatal mental health research

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Firstly, the terms in itself I find quite humorous. if someone was to ask me the question as to why it is hard to reach and engage with a Black mother, like myself as a service user for research purposes, my simple response would be, it depends who is asking?

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We Celebrate All The Wonders Of Black Motherhood.
Digital Safe Space | Sisterhood | Podcast

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British mother

Candice Brathwaite

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I absolutely sped through this incredible book. It is so clear that Candice has poured everything into this book in order to educate us about life for Black women in Britain.

At a time where Black voices are finally being heard, Candice writes eloquently about the need for white people to understand the impact of their actions and their inbuilt racism and to learn how to change.

This "mumoir" was enlightening, horrifying but also hilarious. Thank you Candice for writing this ❤️

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I absolutely sped through this incredible book. It is so clear that Candice has poured everything into this book in order to educate us about life for Black women in Britain. At a time where Black voices are finally being heard, Candice writes eloquently about the need for white people to understand the impact of their actions and their inbuilt racism and to learn how to change.

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White fragility: Why it's so hard for white people to talk about racism

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White fragility: Why it's so hard for white people to talk about racism

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Robin Diangelo explores Anger. Fear. Guilt. Denial. Silence. (also available from other retailers)

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Our Christmas Last Posting Dates can be found here

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Delivery is free for the UK. Western Europe costs £60 for each 12 month subscription package purchased. For the Rest of the World the cost is £100 for each package purchased. All delivery costs are charged in advance at time of purchase. For more information please visit the A Year of Books page.

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* For Exclusions and terms on damaged or delivery issues see Returns Help & FAQs

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White Fragility: Why It's So Hard for White People to Talk About Racism - Robin DiAngelo; | Foyles Bookstore

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The International Bestseller 'With clarity and compassion, DiAngelo allows us to understand racism as a practice not restricted to "bad people." In doing so, she moves our national discussions forward. This is a necessary book for all people invested in societal change' Claudia Rankine Anger. Fear. Guilt. Denial. Silence.

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Layla F Saad uses a step-by-step reflection process encouraging people with white privilege to examine their racist thoughts and behaviors

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When Layla F. Saad ran a free month-long Instagram challenge during the summer of 2018, she had no idea it would become an international cultural movement.

Thousands of people from around the world were galvanized by the #meandwhitesupremacy challenge, examining and owning responsibility for the ways in which they uphold white supremacy.

Over 80,000 people downloaded her guide to the movement, Me and White Supremacy Workbook in the space of just six months. And now, that guide is a NYT, USA Today, WSJ and Amazon bestseller.

Me and White Supremacy: A 28-Day Challenge to Combat Racism, Change the World, and Become a Good Ancestor leads readers through a journey of understanding their white privilege and participation in white supremacy, so that they can stop (often unconsciously) inflicting damage on black, indigenous and people of color, and in turn, help other white people do better, too. The book goes beyond the original workbook by adding more historical and cultural contexts, sharing moving stories and anecdotes, and includes expanded definitions, examples, and further resources.

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Over 80,000 people downloaded her guide to the movement, Me and White Supremacy Workbook in the space of just six months. And now, that guide is a NYT, USA Today, WSJ and Amazon bestseller.

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Why I'm no longer talking to white people about race

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Why I'm no longer talking to white people about race

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British writer Reni Eddo-Lodge (also available from other retailers)

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Brit(ish) on Race, Identity and Belonging

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Brit(ish) on Race, Identity and Belonging

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British writer, broadcaster and former barrister Afua Hirsch (also available from other retailers)

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Brit(ish): On Race, Identity and Belonging

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Brit(ish): On Race, Identity and Belonging eBook : Hirsch, Afua: Amazon.co.uk: Books

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A GUIDED ANTI-RACISM JOURNEY FROM BYSTANDER TO CHANGEMAKER.

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‘I invite you to be courageous and get comfortable with being uncomfortable, because any discomfort you feel is temporary and pales in comparison to what black and brown people often have to experience on a daily basis. Are you ready? Let’s get started, we have work to do.’ The Good Ally is an urgent call to arms to become better allies against racism and provides a thoughtful approach, centering collective healing, to do so. It is a book for those against persistent racial injustice, hungry to expand their knowledge and understanding of systemic racism in Britain and beyond. It uncovers the roots of racism and its birthplace, anti-Blackness. It is for those who not only want to be able to better recognise both subtle and overt forms of racism in action, to examine their powerful role in it, but who want to know what to do about it. The answer often lies within. The Good Ally is the answer to ‘what next?’

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Breaking the Dead Silence: responses to #BLM 2020

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Breaking the Dead Silence: responses to #BLM 2020

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This is also available as a book, please ask your local bookstore or search online.

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Breaking the Dead Silence- Engaging with the Legacies of Empire and Slave-ownership in Bath & Bristol's Memoryscapes

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A workshop for all those working in maternity settings

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Join us for an interactive day exploring topics such as privilege, language, perceptions and culturally varying practices. Mars and Nicola are from an African Caribbean and English Irish Muslim background coming up through racism, riots and activism in London and have worked within maternity services for 35 years combined, gathering the stories of health care practitioners and parents of cultural incompetence and wanted to make some change so put together this workshop.

They teach women from all over the world and gather more customs and wisdoms as they go. Click on their names to read more about your teachers and see Nicola giving her TED talk and Mars presenting at the Doula UK conference.

This workshop aims to work through the way we work culturally and how to implement best practice when working within the birth world. Looking at our language, awareness of self and ways of working, this is going to be a full day with role play as well as individual and group work. We look forward to your active participation. On occasion this workshop is available to travel to you - please be in touch to discuss this.

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Join us for an interactive day exploring topics such as privilege, language, perceptions and culturally varying practices. Mars and Nicola are from an African Caribbean and English Irish Muslim background coming up through racism, riots and activism in London and have worked within maternity services for 35 years combined, gathering the stories of health care practitioners and parents of cultural incompetence and wanted to make some change so put together this workshop.

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Promoting Healthy racial identity, bringing up anti-racist children

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The Conscious Kid is an education, research and policy organization that supports families and educators in taking action to disrupt racism, inequity and bias

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Mother, Midwife, Mentor

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I am a midwife, birth debrief facilitator, author and mother of two. I qualified as a midwife in 2017 and went on to work in a busy south London hospital. Upon leaving clinical work I embarked on this journey to support those in the perinatal trauma.

My own birth experience led me to explore birth trauma and its impacts and most importantly the ways in which it varies and affects women and their families differently.

Over the past 2.5 years, I have supported everything from difficulty with conception, to miscarriage, still birth and difficult birth, postnatal, infant feeding and relationship difficulties.

I have honed my skill and have hundreds of hours under my belt. I am confident that should you need it, I can support you to overcome your difficult perinatal experience, make peace with your experience and plan and prepare for subsequent pregnancy, birth and postnatal experiences.

I support couples, birthing parents as well as non-birthing parent with an awareness that perinatal trauma affects all parties.

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I am a midwife, birth debrief facilitator, author and mother of two. I qualified as a midwife in 2017 and went on to work in a busy south London hospital. Upon leaving clinical work I embarked on this journey to support those in the perinatal trauma.

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Where black birth matters

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There is a wisdom in the stories that our grandmothers tell us. It's the medicine of generations. The stories of our collective pasts, and the hope for our future. The world of birth is not new and neither is the work of the birthkeeper.

When you decide to become an Abuela doula, you will be encouraged to reach back into your cultural heritage to bring forward the traditions of your mothers and your mothers' mothers. The role of a doula is to support and to be with women as they travel through pregnancy, birth and those early postnatal days. To sit in and share the wisdom of the Abuelas, the grandmothers.

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There is a wisdom in the stories that our grandmothers tell us. It's the medicine of generations. The stories of our collective pasts, and the hope for our future. The world of birth is not new and neither is the work of the birthkeeper.

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This require being honest with yourself.

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Free online training for our NHS staff and colleagues

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This programme is in partnership with...

About the Cultural Competence programme

The Cultural Competence e-learning tool is made up of three 20-30 minute learning sessions. The purpose of the tool is to support clinicians in the NHS to gain knowledge and understanding of the issues around culture and health; and how this might influence health care outcomes.

Being Culturally Competent is not only about respecting and appreciating the cultural contexts of patients' lives. Neither is it a one-size-fits-all approach - it's about understanding the way we deliver health care and responding to the needs of our diverse population.

Cultural competence is a key aspect of providing both quality and safe care. This is why health professionals need to be aware and gain understanding of the key issues relating to culture and how this may influence the uptake of health care and treatment options. Developing this knowledge and understanding will influence the way we give care and could have an impact on reducing disparities in health care outcomes.

This e-learning tool provides a resource of information and opportunities for professionals to reflect and review their own understanding and practice. Completing this e-learning tool will enable you to gain insight and confidence in navigating and responding to the varied needs of your patients. This tool can support continued professional development and can be included in your portfolios for revalidation.

The Cultural Competence e-learning tool has been developed by Health Education England e-Learning for Healthcare and is provided free to all healthcare professionals. The tool has been developed in collaboration with the Royal College of Midwives and other key stakeholders.

More information

With the UK population becoming increasingly diverse, it is important that health care professionals do not minimise the cultural context of an individual's health.

We need to work in a way which is inclusive and values diversity. Developing a greater awareness of diverse cultural beliefs can help healthcare professionals in meeting the diverse needs of all patients and families.

In the video below the Chief Nurse of England, Professor Jane Cummings, explains why developing cultural competency is important.

How to access

There are three sessions in total. The first two sessions are aimed at all professional groups. The third session is an additional resource specifically aimed at midwives.

The first session aims to describe what is meant by 'culture' and why it is important for health professionals to be aware of how this can impact health.

The second session describes cultural competence and its importance for health professionals working across cross-cultural situations.

This session looks at the importance of cultural competence in the context of maternity care and aims to help health care professionals support and meet the needs of a changing population.

In order to access the Cultural Competence programme, you will need an e-LfH account. If you do not have one, then you can register by selecting the Register button below.
Register >
To view the Cultural Competence programme, select the View button below. If you already have an account with e-LfH, you will also be able to login and enrol on the programme from the View button.
View >
NHS healthcare staff in England

The Cultural Competence programme is also available to NHS healthcare staff via the Electronic Staff Record (ESR). Accessing this e-Learning via ESR means that your completions will transfer with you throughout your NHS career.

Further details are available here.

Not an NHS organisation?

If you are not an NHS health or care organisation and therefore do not qualify for free access e-LfH Hub, you may be able to access the service by creating an OpenAthens account.

To check whether or not you qualify for free access via OpenAthens, you can view the eligibility criteria and register on the ' OpenAthens ' portal.

Registering large numbers of users

If you are a HR, IT or Practice Manager and would like to register and enrol large numbers of staff within your organisation for access onto the Cultural Competenceprogramme, please contact e-LfH directly.

Organisations wishing to use their own LMS

For HR departments wanting to know more about gaining access to courses using an existing Learning Management System please contact e-LfH directly to express interest.

More information

Please select the following link for more information on how to use the e-LfH Hub.

e-LfH is a Health Education England Programme in partnership with the NHS and Professional Bodies

© e-Learning for Healthcare 2021

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Cultural Competence - e-Learning for Healthcare

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This programme is in partnership with... The Cultural Competence e-learning tool is made up of three 20-30 minute learning sessions. The purpose of the tool is to support clinicians in the NHS to gain knowledge and understanding of the issues around culture and health; and how this might influence health care outcomes.

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JanamApp is your information companion through your pregnancy journey and beyond.

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JanamApp is your information companion through your pregnancy journey and beyond.

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The Information is available in English, as well as five South Asian languages, Hindi, Gujarati, Punjabi, Urdu and Bengali.

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Download our app for free, by clicking the links below. One stop pregnancy information guide for South Asian mums The JanamApp is trustworthy information at your fingertips for all your needs in pregnancy, labour and postnatal care including looking after your baby in the first few weeks of birth. Available in : English, Urdu, Gujarati,

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Committed to highlighting and changing Black women and birthing people's maternal health outcomes in the UK

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WE NEED YOUR HELP

Our team is working tirelessly to increase awareness of the disparities in maternal mortality rates for black women in the U.K.

With your support Five X More has an ambitious and exciting plan to play a leading role in eradicating the statistics for good.

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Our team is working tirelessly to increase awareness of the disparities in maternal mortality rates for black women in the U.K. With your support Five X More has an ambitious and exciting plan to play a leading role in eradicating the statistics for good.

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Worried about what to say? (to Black people? Gay People? Sikh People? And many more!)

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Worried about what to say? (to Black people? Gay People? Sikh People? And many more!)

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Things not to say (6 minute videos to amuse and make you think)

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BBC Three | Docs, Comedies, Videos & Articles

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All the latest documentaries, comedy, videos, articles and more from the award winning digital channel, BBC Three. Makes you think. Makes you laugh

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Combatting racial discrimination against midwives and nurses and nursing associates

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Combatting racial discrimination against midwives and nurses and nursing associates

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This resource supports all registered nursing and midwifery professionals working in the NHS, and across all health and care settings, to combat racism and challenge racial discrimination

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Resource for nursing and midwifery professionals registered with the Nursing and Midwifery Council.

Foreword

Racism is unacceptable and it has no place in health and care. But we know that it exists and that the impact on our colleagues can be devastating.

As registered professionals, we all have responsibility under the Nursing and Midwifery Council (NMC) Code to challenge discriminatory behaviour, creating an environment where people are treated as individuals and with dignity and respect.

This resource is firmly rooted in our professional Code and it is designed to support nurses, midwives and nursing associates, providing advice on the action you can take if you witness or experience racism. It also supports those in leadership roles to be inclusive leaders.

This document provides practical examples of how, as nursing and midwifery professionals, you can recognise, and challenge racial discrimination, harassment, and abuse. It also highlights other useful resources and training materials that will support you to care with confidence.

We want you as professionals to feel empowered so that together we take action to identify and address racism. We also recognise that there is more to do to ensure robust leadership accountability is underpinned by the right processes. This document is a resource for individuals at all levels.

This resource does not replace existing NHS England policies and procedures for speaking up and managing racism. It is a resource to support best practice in line with organisational policies and procedures.

We hope you will share this among your colleagues and that it will help us work together to make a real difference.

Dame Ruth May DBE, Chief Nursing Officer for England, NHS England.

Andrea Sutcliffe CBE, Chief Executive and Registrar, Nursing and Midwifery Council.

Joan Saddler OBE, Director of Partnerships and Equality, NHS Confederation.

Introduction

"Racism is a serious public health threat and directly affects the wellbeing of millions." Centers for Disease Control and Prevention.

This resource supports each nurse, midwife and nursing associate working in the NHS to combat racism and secure your and your colleagues' wellbeing and psychological safety. It shows you how you can discharge your professional duty in opposing racism and gives practical examples of how to recognise and challenge racial discrimination, harassment and abuse. Within and across our professions we all need to work together to build a safe environment and an inclusive culture that promotes a healthy work experience, both for our benefit and people in our care.

This resource has been developed in partnership by the Chief Nursing Officer (CNO) and Chief Midwifery Officer (CMidO) Ethnic Minority Action Plan Steering Group, NHS Confederation and the Nursing and Midwifery Council.

Who is it for?

It is for all nursing and midwifery professionals registered with the Nursing and Midwifery Council working in the NHS. This resource is designed to help every one of us recognise and challenge racial discrimination and in doing so promote everyone's wellbeing, physical and psychological safety. While the resource has been developed with a focus on NHS organisations, the principles apply and the resources highlighted will be helpful for all nurses, midwives and nursing associates working in every health and care setting.

How is it of use?

The resource can help you act according to best professional practice, when:

witnessing racism
you better understand and feel confident about what you can do during and after witnessing an incident that is directed at someone else

experiencing racism
you feel better equipped to manage incidents as they are happening to you and afterwards

leading anti-racism
you feel you have the insights and skills to provide anti-racism leadership that creates safe working environments, and tackles and responds effectively to racial discrimination, harassment or abuse.

The practical examples and tools will help you discuss, explore and challenge racism safely and effectively, including at the time a challenging situation occurs.

This resource and the nursing and midwifery framework below are informed by the insights of experienced nurses and midwives, and a rapid qualitative evidence review (Jieman, AT., Onwumere, J., Woodhead, C., Stanley, N., Hatch, SL. Developing anti-racist practice to support black and other racially minoritised nurses and midwives within the NHS: A rapid qualitative evidence synthesis. Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King's College London; July 2022) This resource uses the framework and reflects the four domains of the Code for professional standards of practice and behaviour for nurses, midwives and nursing associates (NMC Code): prioritise people; practise effectively; preserve safety and promote professionalism and trust.

Nursing and midwifery anti-racism resource framework

Image text: This diagram highlights the four key areas that make up the nursing and midwifery anti-racism resource framework and are explored in this resource; 1. Challenging racism, 2. Caring and belonging, 3. Challenging leadership and 4. Authentic inclusion.

The Tackling Inequalities and Discrimination Experiences in Health Services (TIDES) team at Kings College London were commissioned by NHS Confederation to complete a rapid synthesis review of research, policy recommendations and examples from healthcare practice to support the development of effective anti-racism practice that can help improve the experiences and outcomes of minority ethnic nurses and midwives in the NHS. The adaptation of the above framework diagram stems from their review findings.

Publications:

1. Challenging racism (NMC Code - practise effectively)

Racism is a public health crisis ( American Public Health Association). All NHS organisations must have due regard to the need to eliminate unlawful discrimination', advance equality of opportunity and foster good relations between all its people. Challenging racism requires sustained proactive action by our organisations, but each of us also has a duty and responsibility to proactively identify, challenge and oppose racism; and to look at ourselves and be willing to change any behaviours and unfounded beliefs that could damage our colleagues and people in our care. It is an expectation of the NMC Code, and a pre-requisite for effective practise.

"I would like to see zero racism in the NHS." Taking an active role in leading anti-racism (Angela Knight Jackson; Studio Giggle) watch time: 3:28 minutes.

Actions you can take

If you observe racism as a colleague or leader, you can:

Challenge racism from people in our care or staff regardless of their seniority. In line with the NMC Code, you should feel able to immediately engage with the individual who is displaying discriminatory behaviours. Keep your language and tone clear, calm and objective. If you find it difficult to challenge 'in the moment', seek support; see 'Resources to help you' below. You should feel able to not ignore the incident.

Speak up when witnessing racism. Be an 'active bystander' by telling individuals that their discriminatory behaviour is unacceptable. You should feel able to intervene by directly stepping in, distracting away from the situation, escalating to someone with more authority or delaying action until after the immediate event. If you escalate or delay taking action, you need to check in with the victim of racism after the incident. Ask if they are ok and explain what steps you plan to take. Check with the manager you escalated to that they have taken appropriate action.

Speak outwhen you witness a racist incident, even if it feels uncomfortable or you do not know the 'correct' terminology. Using incorrect terms can be experienced as stigmatising, depersonalising and 'othering' (othering is a process whereby individuals and groups are treated and marked as different and inferior from the dominant social group, and as a consequence may suffer discrimination) but it is worse not to challenge racism. The resource can be used to help you feel more confident in offering an apology if someone is hurt by your words. People are likely to accept an apology when they see you are trying to do the right thing by standing up against racism.

Support from your organisation, leaders and colleagues

You should expect your NHS employer to provide training to help you to put its zero tolerance policies into practice. This means that everyone in your team knows how to respond to an abusive or threatening person or incident and protect colleagues and people in our care, including how to contact security and the police, and take appropriate legal action.

You should expect your colleagues to stand up against unacceptable behaviour and violence. Senior leaders act as proactive allies by assisting you to take appropriate action to protect yourself, others and hold perpetrators to account in line with the NMC Code.

Your training should help you to develop confidence to act and effectively respond to discriminatory behaviours, report discrimination incidents and care for an affected person.

"...step up and be the friend, co-worker, peer who says something about it..." Bystander Intervention (University of Maine's Rising Tide Center, 5-Minute Professional Development Series) watch time 5:45 minutes.

Resources

2. Caring and belonging (NMC Code - preserve safety)

True workplace inclusion is evident when people feel a sense of belonging and being valued; where they are psychologically and physically safe to be themselves at work and share views, opinions and experiences in a respectful and thoughtful fashion.

Everyone has the right to dignity and respect, and to feel included. But what if the behaviour of others means you or a colleague feel excluded?

"...I think racism kills people..." Racism in the NHS - Documentary watch time 18:58 minutes.

Actions you can take
Use the tools and advice in this resource to help you manage racist exclusion at the time it happens.

Feel able to talk to your colleagues, managers or HR colleagues about your concerns; how exclusion is impacting on your wellbeing and performance or that of your colleague.

Keep a diary of incidents so that you have a record of what is happening and how it is impacting on you and colleagues.

Feel able to expose barriers and lead change without negative repercussions. Racism can be embedded in organisational structures; it can inhibit access to professional development opportunities and hinders career progression. Feel able to work with colleagues to promote anti-racism, for example, look at your team; how diverse is it? Ask your manager about what they're doing to promote equality; support and speak up for a colleague if they have been having a negative experience at work.

Support from your organisation, leaders and colleagues

All NHS organisations have policies that deal with discrimination. Below are some examples of good practice within these policies.

NHS organisations host events where safe and useful conversations can be held about implementing anti-racist policies and practices that deliver transparent solution-focused outcomes.

NHS organisations host robust staff networks so staff and allies from racially minoritised communities (a replacement of the acronym BAME (Black, Asian, and Minority Ethnic) to better explain that people are actively minoritised by others rather than naturally existing as a minority. The term racially minoritised confirms that so-called minoritisation is a social process shaped by power. The lancet; Vol5 August 2020) can share their experiences, develop strategies and implement actions for improving anti-racist practice.

NHS organisations work with staff to educate to reform practice. For example, demonstrating respect for cultures in practice.

"...have a really good support system around you, (..) people that can push and motivate you..." How I overcame racist abuse in the NHS (Hafsa Mahumad, UEA paramedic science graduate, Norfolk; House of Medics) watch time 9:31 minutes.

Resources

All leaders have a duty to take racism and its effects on our health, occupational outcomes and people in our care seriously. Effective leaders will stand with us to dismantle discriminatory practices in the healthcare system that affect us and people in our care. It is aligned with the NMC Code and promoting professionalism and trust.

Our professional revalidation process supports us in delivering professional standards of practice and behaviour and is an opportunity to reflect on and develop anti-racist behaviours, and practices.

"... many are too afraid to speak, unless the workforce is properly supported..." Ethnic minority leaders in NHS on what needs to change to keep BAME health workers safe (ITV News) watch time 3:55 minutes.

Actions you can take

Talk to colleagues who you feel safe with.
Decide what steps you need your employer to take to address the racism you witness or experience.

Come together with your colleagues to agree what support to seek from your employer.
Advise your employer what you need them to do to better fulfil their duty of care and statutory obligation to adhere to best professional practice.

Seek advice (from organisations listed at the end of this resource) because you may need to challenge if leaders take no action.

Support from your organisation, leaders and colleagues

All NHS organisations should promote anti-racist policy, practice and procedures, and know how to respond to racist practices, behaviours and incidents.

Encourage conversations about racism and anti-racism with all staff, valuing the voices and experiences of staff from racially minoritised communities.
Best practice is where teams are offered protected time for open conversations about racism.

Best practice is where everyone receives training in effective anti-racist responses and encourage cultural change.
For example, cultural awareness training reflects the nature of British culture, as well as respect for the cultures of nurses and midwives' countries of origin.

Best practice is where transparent anti-racism practise is championed.
This includes implementing robust anti-racist policies, practices and procedures in line with their statutory duties that ensures a safe working environment for and the health and wellbeing of staff. Staff feel supported after distressing racist incidents.

Data such as the Workforce Race Equality Standard (WRES) and your employer's WRES action plan should be published to show an organisation's progress in creating a non-discriminatory working environment where all staff feel reassured that they can achieve their full potential and all people in our care feel reassured they will receive the best quality care.

WRES addresses representation and lack of opportunity for career progression.

"... what was worst, my White colleague was just standing there, not saying anything (...) " Experience of racism in the NHS (Consultant Devesh Sinha; Barking, Havering and Redbridge University Hospitals NHS Trust) watch time 2:17 minutes.

Resources

4. Authentic inclusion (NMC Code - prioritise people)

The NMC Code asserts that everyone has the right to dignity and respect, and to feel included. If a staff group is not inclusive, this may impact on staff, outcomes and safety of people in our care. Staff must identify, challenge and report any exclusionary practices and behaviours, and support colleagues to do the same.

"We will be a workforce that is cohesive, cares for each other regardless of background..." Inclusion and race equality in the NHS (Yvonne Coghill; NHS South East Health and Wellbeing Community) watch time2:35 minutes.

Actions you can take

Become part of a network or a community that has a better understanding of how racism impacts colleagues.
Use the insights from network or community members with lived experience to inform how you can ensure an inclusive workplace.

Share experiences or observations of exclusionary practices
eg ask if a restaurant would make a nice change from the pub for a team event and be more inclusive?

Support from your organisation, leaders and colleagues

Good practice allows you to attend networks.

Supporting suitable networks for staff to join is embedded in the thinking of board members, the Chief Nursing Officer and Integrated Care Board chief nurses and chief midwives.

Good practice is co-development of anti-racist action plans and practices with professional staff networks of nurses, midwives and nursing associates, and networks of staff from racially minoritised communities and their community organisations as 'critical friends'.

Resources

Further resources to help you

Listed below are links to resources and support to help you if you think you have been unfairly discriminated against.

1. Know your rights

Your employer must follow the law on preventing discrimination.

Health and Safety Act - Section 2 ensures the health, safety and welfare, including mental health

Equality Act 2010 - protects employees from unlawful discrimination, harassment and victimisation on the grounds of race

Equality Act guidance - understand your rights to be treated equally in employment

Nursing and Midwifery Council - The Code sets out relevant aspects of the Code in accessible terms

2. Get help from your organisation

Importantly, you can talk to your employer first to try and sort out the problem informally. If things cannot be sorted out informally ask for external professional support.

3. Ask for external professional support

If things cannot be sorted out informally, you can reach out for professional support.

Publication reference number: PR1897

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Combatting racial discrimination against minority ethnic nurses, midwives and nursing associates

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Racism is unacceptable and it has no place in health and care. But we know that it exists and that the impact on our colleagues can be devastating. As registered professionals, we all have responsibility under the Nursing and Midwifery Council (NMC) Code to challenge discriminatory behaviour, creating an environment where people are treated as individuals and with dignity and respect.

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Learning more about yourself and any biases you may have

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Learning more about yourself and any biases you may have

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The Implicit Association Test (IAT) measures attitudes and beliefs that people may be unwilling or unable to report.

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Preliminary Information

On the next page you'll be asked to select an Implicit Association Test (IAT) from a list of possible topics . We will also ask you (optionally) to report your attitudes or beliefs about these topics and provide some information about yourself.

We ask these questions because the IAT can be more valuable if you also describe your own self-understanding of the attitude or stereotype that the IAT measures. We would also like to compare differences between people and groups.

On the IAT, you may find it easier to pair certain attributes with one group of people compared to another. Your IAT results may depart from your personal beliefs.

Note: This site is designed for adults, aged 18 or older.

Data Privacy: Data exchanged with this site are protected by SSL encryption. Project Implicit uses the same secure hypertext transfer protocol (HTTPS) that banks use to securely transfer credit card information. This provides strong security for data transfer to and from our website. IP addresses are routinely recorded, but are completely confidential. For research purposes, data without directly identifying information is made publicly available. You can find more information on our Data Privacy page.

Important disclaimer: In reporting to you results of any IAT test that you take, we will mention possible interpretations that have a basis in research done (at the University of Washington, University of Virginia, Harvard University, and Yale University) with these tests. However, these Universities, as well as the individual researchers who have contributed to this site, make no claim for the validity of these suggested interpretations. If you are unprepared to encounter interpretations that you might find objectionable, please do not proceed further. You may prefer to examine general information about the IAT before deciding whether or not to proceed.

If you have questions about the study, please contact Project Implicit at questions@projectimplicit.net. To obtain more information about the study, ask questions about the research procedures, express concerns about your participation, or report illness, injury or other problems, please contact:

Tonya R. Moon, Ph.D.
Chair, Institutional Review Board for the Social and Behavioral Sciences
One Morton Dr Suite 500
University of Virginia, P.O. Box 800392
Charlottesville, VA 22908-0392
Email: irbsbshelp@virginia.edu
Website: https://research.virginia.edu/irb-sbs
Website for Research Participants: https://research.virginia.edu/research-participants

I am aware of the possibility of encountering interpretations of my IAT test performance with which I may not agree. Knowing this, I wish to proceed I am aware of the possibility of encountering interpretations of my IAT test performance with which I may not agree. Knowing this, I wish to proceed using a touchscreen OR using a keyboard.

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On the next page you'll be asked to select an Implicit Association Test (IAT) from a list of possible topics . We will also ask you (optionally) to report your attitudes or beliefs about these topics and provide some information about yourself.

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Racism & the Pandemic

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Nursing Narratives - Racism & the Pandemic

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We will acknowledge the impact of racism and work to create a culture where everyone is safe and supported to talk openly and tackle racism together.

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Five X More CIC is a grassroots organisation committed to changing and highlighting Black maternal health outcomes in the UK.

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THE BLACK MATERNITY EXPERIENCES SURVEY A NATIONWIDE STUDY OF BLACK WOMEN’S EXPERIENCES OF MATERNITY SERVICES IN THE UNITED KINGDOM (May 2022)

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THE BLACK MATERNITY EXPERIENCES SURVEY A NATIONWIDE STUDY OF BLACK WOMEN’S EXPERIENCES OF MATERNITY SERVICES IN THE UNITED KINGDOM (May 2022)

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We believe a crucial step to solving the disparities in maternal healthcare is understanding how maternity care is delivered from the perspective of women from the Black community.

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Black Maternity Matters is a ground-breaking collaboration, supporting midwives to reduce the inequitable maternity outcomes faced by Black mothers

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West of England Academic Health Science Network

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Black Maternity Matters is a ground-breaking collaboration, supporting midwives to reduce the inequitable maternity outcomes faced by Black mothers. It will support maternity systems to offer safer, equitable care for all.

Did you know?

Black women are four times more likely to die during pregnancy or in the postnatal period than White women.¹

Stillbirth rates of Black and Black British babies are over twice those for White babies.²

It is also widely accepted that there are inevitable ‘near misses’, instances of poor care and psychological impact that have not yet been a focus of research, which add to the negative experience of many Black women during pregnancy and post-natal care.

While there are examples of excellent work happening around the country, the West of England has not yet developed a targeted, unified strategy to improve outcomes for Black pregnant women and their babies. Where training and education is offered, maternity staff are often left with no clear steps on how to introduce and test potential changes and improvements.

By setting up a supportive collaborative for maternity staff, offering peer support, education and training, and coaching in quality improvement (QI), our Black Maternity Matters project seeks to change this.

Statistics show that as a Black woman you are four times more likely to die in childbirth than a White woman. Therefore we have to confront the uncomfortable truths and challenge the inequalities in the structures that are impacting on Black children and their mothers before they are born.

Aisha Thomas, Founder of Representation Matters

About the project

Inspired by Black Mothers Matter’s vision that one day Black mothers will no longer be disproportionately in danger during pregnancy and the first year after birth, the Black Maternity Matters project has been developed by the West of England AHSN in partnership with Representation Matters and BCohCo.

Up to 15 midwives, maternity healthcare support workers and maternity care assistants
from across the West of England are coming together to form a regional collaborative, providing psychological safety and peer support in which to explore the issues facing Black mothers and what changes can be made in how we provide maternity services and care.

The work of the collaborative will be informed by local parent partners who will be invited to share their lived experience of maternity services to help shape their training and education, as well as their subsequent improvement projects.

Education and training

Members of the collaborative will take part in an innovative six-month education and training programme, focusing on cultural competency and diversity fluency. Participants will examine unconscious biases and the role of the individual in perpetuating unsafe systems of care for Black women.

The training programme will increase capacity and embed learning through a ‘train the trainer’ approach, resourcing the participants to take back and share their learning with colleagues in their own maternity units.

Quality improvement

Participants will also be supported to develop as quality improvement (QI) practitioners.

Using the learning and insights they have gained and with ongoing support from the wider collaborative, they will receive training and coaching to help them design and implement QI projects in their own hospitals, running small tests of change aimed at improving experiences and outcomes for Black women.

Participants will have the opportunity to join the Health Foundation’s Q community, and we will be launching a Q Special Interest Group to maximise learning and wider QI coaching.

Black Maternity Matters is one of nine projects around the country to be awarded funding from the Health Foundation through its Q Supporting local learning funding programme.

Evaluation

The West of England AHSN will carry out a qualitative and quantitative evaluation of the approach to identify both enablers and barriers in using QI to improve equity.

We will share learning regionally and nationally to inform the potential scale-up of this programme and to influence similar initiatives aimed at reducing inequity for other populations within and outside the maternity system.

We are honoured to have been invited to collaborate on such an important initiative, integral to the future of Black women and children’s health and wellbeing.

Katie Donovan-Adekanmbi, Inclusion and Cohesion Specialist at BCohCo

Become a parent partner

It is important to us that the experiences of Black mothers guide this project.

We are keen to hear from Black women and their families who would like to use their experience of maternity care to improve the experiences of other women and their babies.

By joining our steering group, you’ll work alongside midwives and other maternity professionals, shape the education and training materials, and review the ongoing improvement work in local maternity trusts.

For more information, take a look at the parent partner role profile, and if you are interested in getting involved please email us at weahsn.transformation@nhs.net. We hope to start working with parent partners as soon as possible.

We are so pleased to have this fantastic opportunity to develop this innovative programme to use a QI approach to deliver meaningful, actionable improvements to reduce inequity of outcomes for Black women within maternity systems.

Ann Remmers, Maternity and Neonatal Clinical Lead for the West of England AHSN

Project timescales

February to April 2022 – form the collaborative, recruit a midwife champion, design and development of the project through co-production with hospital and parent partners

May to October 2022 – launch of training and midwife learning community/collaborative

May to December 2022 – coaching and development of QI projects, share and learn sessions and collaborative working

July to December 2022 – evaluation.

Who is involved in the project?

West of England AHSN

Black Mothers Matter

Representation Matters

BCohCo

University Hospitals Bristol and Weston NHS Foundation Trust

North Bristol NHS Trust

BNSSG Maternity Voices Partnership

BNSSG Local Maternity and Neonatal System Board

Health Foundation

Representatives of these organisations explain what it means to be involved in this groundbreaking project:

Aisha Thomas, founder of Representation Matters: “Statistics show that as a Black woman you are four times more likely to die in childbirth than a White woman. Therefore we have to confront the uncomfortable truths and challenge the inequalities in the structures that are impacting on Black children and their mothers before they are born.

“We are delighted to partner on this project to ensure that through this pilot midwives are able to enhance their knowledge, tackle their bias and prejudice, and become more equipped so that we can ensure that all children are able to enter into the world safely, irrespective of the colour of their skin.”

Aisha Davies, Founder and Director of Black Mothers Matter: “We are excited to start work on a project that centres Black birthers and their experiences. From our work, we know that this project being led by Black birthers for Black birthers is absolutely vital.

“We will be able to harness our experiences as Black women alongside voices from our community, and professional knowledge that comes from working within the NHS, to create something that has the potential to contribute to real and meaningful change as well as start to unpick the systemic inequalities faced by Black women.

“Overall, we believe a new approach to correcting the inequalities that we and our community face during pregnancy is vital, and this project goes a long way to helping that vision.”

Katie Donovan-Adekanmbi, Inclusion and Cohesion Specialist at BCohCo: “At BCohCo our mission is in our name – Building Cohesive Communities. We are honoured to have been invited to collaborate on such an important initiative, integral to the future of Black women and children’s health and wellbeing.

“Many attitudinal and organisational barriers currently exist within maternity spaces and services. We will be taking a deep dive into the biases faced by women of colour, working together to stimulate the innovation and creativity required to build the change. We are really looking forward to the journey.”

Ann Remmers, Maternity and Neonatal Clinical Lead at the West of England AHSN: “We are so pleased to have this fantastic opportunity to develop this innovative programme to use a QI approach to deliver meaningful, actionable improvements to reduce inequity of outcomes for Black women within maternity systems.

“It is a national priority for maternity systems to develop equity plans to address inequalities in maternity care and to improve outcomes. This pilot will support maternity services locally and regionally to develop these plans led by Black mothers.”

Contact us

If you would like to get involved in Black Maternity Matter or want to find out more about the project, please email us at weahsn.transformation@nhs.net.

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Black Maternity Matters - West of England Academic Health Science Network

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Black Maternity Matters is a ground-breaking collaboration, supporting midwives to reduce the inequitable maternity outcomes faced by Black mothers. It will support maternity systems to offer safer, equitable care for all.

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How do you make sure your workforce or volunteer team is more representative?

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Rent-A-Minority is a revolutionary new service designed for those oh-shit moments where you've realized your award show, corporate brochure, conference panel is entirely composed of white men. For, like, the fifth year in a row. Suddenly you're being called out on Twitter and you need to look not-racist and not-misogynist fast.

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Advocacy, resources, helpline, campaigns

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The Shuri Network is the first NHS and care network of women from minority ethnic groups in digital health.

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The Shuri Network is the first NHS and care network of women from minority ethnic groups in digital health.

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A unique team that has had a big impact on celebrating difference and diversity in digital health, challenging the system to take action and supporting women from ethnic minorities to succeed in their careers.

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“It is in our hands to create a better world for all who live in it.” ​Nelson Mandela

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The Shuri Network is the first NHS and care network of women from minority ethnic groups in digital health. We are a unique team that has had a big impact on celebrating difference and diversity in digital health, challenging the system to take action and supporting women from ethnic minorities to s…

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*** Now updated with Ukrainian and Russian translations *** 

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*** Now updated with Ukrainian and Russian translations *** 

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Maternity information translations

*** Now updated with Ukrainian and Russian translations ***

We know that women from minority ethnic groups, refugees, asylum seekers and those whose first language is not English are at greater risk of poorer maternity and neonatal outcomes. We are working hard across the region to reduce these health inequalities, making birth safer and more personalised.

In collaboration with Papillon Translations and Surrey Heartlands' Local Maternity and Neonatal System, these maternity information resources aim to support our Afghan and Ukrainian families through pregnancy, labour, birth and the early days with their new baby. Using current information on the NHS website, the leaflets and the app provide written and audio information in Dari and Pashto, Ukrainian and Russian as well as English.

These resources are designed to support discussions between women and their healthcare professionals, facilitated by a suitable interpreter, to help them make informed choices about their maternity care.
To read or listen to information on the topics below in different languages, download the Papillon Translations app from Google Play or Apple Store, and scan each of the QR codes in the documents below:

The resources can also be downloaded as PDF documents here:

You are welcome to share this campaign content widely throughout your networks, please ensure the South East Maternity Team is credited wherever possible. We welcome any feedback to england.sematernity@nhs.net

This website uses cookies to improve your experience. If you continue to use this site, you agree with it.

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Maternity information translations - Welcome

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Maternity information translations *** Now updated with Ukrainian and Russian translations *** We know that women from minority ethnic groups, refugees, asylum seekers and those whose first language is not English are at greater risk of poorer maternity and neonatal outcomes. We are working hard across the region to reduce these health inequalities, making birth safer and more personalised.

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Equity and Equality Action Plan (BaNES, Swindon and Wiltshire)

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Equity and Equality Action Plan (BaNES, Swindon and Wiltshire)

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Co-produced to help achieve equitable maternity and neonatal outcomes

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Gypsy Roma Traveller Boater and Showman Families (GRTBS)

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Gypsy Roma Traveller Boater and Showman Families (GRTBS)

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01273 234 777

Our helpline is open Monday to Friday, 10am to 4.30pm,
excluding Bank Holidays.

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Health and Social Care - Friends, Families and Travellers

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We believe that everyone should receive the support, care and treatment they need, with the compassion, respect and dignity they deserve. Members of Gypsy, Roma and Traveller communities expect to live between 10 and 25 years shorter ... Health and Social Care Read More "

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Understanding more about Gypsy Roma Traveller Boater and Showman Communities

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Understanding more about Gypsy Roma Traveller Boater and Showman Communities

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A short 4 minute video (You Tube)

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Gypsy, Roma and Traveller (GRT) groups in Hampshire schools

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This section will help you to search for policy, publications and information on issues affecting Gypsies and Travellers. Use the filter on the left hand side to refine your search.

Guidance Summary: Tackling Maternal Health Inequalities in Gypsy, Roma and Traveller Communities

This summary guidance is designed to offer insights into the experiences of Gypsy, Roma and Traveller communities relating to maternity, and improve knowledge and understanding of how to approach the planning and provision of maternity services for these groups. Click here to access the extended guide.

View the report

Briefing: Economic and financial exclusion Gypsies and Travellers experience in England

A briefing covering the economic and financial exclusion Gypsies and Travellers experience in England.

View the report

Written evidence for the 2023 Pre-Sessional Working Group Report to the United Nations Committee on Economic, Social and Cultural Rights

A submission of evidence on upholding the rights of Gypsy, Roma and Traveller people to the United Nations Committee on Economic, Social and Cultural Rights.

View the report

Friends, Families and Travellers Annual Report 2022

This report gives an overview of some of the achievements that FFT have had over the 2022 period in supporting Gypsies, Roma and Travellers by providing practical advice and legal support and ensuring the protection of the right to pursue a nomadic way of life.

View the report

'Why The Moon Travels' by Oein DeBhairduin

'Why the moon travels' is a haunting collection of twenty tales rooted in the oral tradition of the Irish Traveller community. Collected by Oein DeBhairduin throughout his childhood, retold in his lyrical style.

Access the resource

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Policy & Publications - Friends, Families and Travellers

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This section will help you to search for policy, publications and information on issues affecting Gypsies and Travellers. Use the filter on the left hand side to refine your search. This summary guidance is designed to offer insights into the experiences of Gypsy, Roma and Traveller communities relating to maternity, and improve knowledge and understanding of how to approach the planning and provision of maternity services for these groups.

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A community based organisation that aims to break through cultural barriers and get the South Asian community to engage with support services.

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Changing Suits - South Asian Community (Swindon)

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Changing Suits - South Asian Community (Swindon)

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Changing Suits is a community based organisation that aims to break through cultural barriers and get the South Asian community to engage with support services.

The organisation was founded by sisters Bal and Taj, after they realised socio-cultural issues which they were struggling with, and discussing between themselves, were similar to those being faced by their friends and family. However, similarly no one in the community was openly discussing these problems due to the cultural pressures of worrying about what the community would say. Throughout the generations South Asian individuals have long seen the importance of upholding family reputation and social status, and have therefore been prevented from speaking out about problem. Taboo topics have often resulted in creating a culture of oppression and gender inequality.

Bal and Taj are second generation British South Asians from a traditional Punjabi family, living in East London. Having grown up in an extended family within a tight-knit community, they experienced regular comments on their families "unfortunate" position of having 3 daughters, as well as other socio-cultural issue within their wider family, such as divorce, health problems etc. The status quo of not discussing problems outside of a family continues the cycle of isolation, which is a cause of the 2 out of 3 British South Asians suffering mental health issues.

Bal and Taj realised that there was a need for more open dialogue about taboo topics within their community, which led them to start Changing Suits.

Taj has worked within mental health services for over 20 years, with training in Mental Health First Aid, Domestic Abuse and Suicide Awareness training. Moreover, she has experience in setting up networking events for local entrepreneurs and wellbeing workshops. She uses her experience to work within the community to raise awareness of the cultural barriers within the South Asian community.

Bal is a qualified personal coach with a degree in Neuroscience, thus using her research background to delve deeper into the social aspect of the South Asian culture. Her experience as councillor and cabinet member in local government, allowed her to connect with various community groups and understand their specific needs. These positions also allowed her to work more strategically to implement lasting change.

Changing Suits began with the Changing Suits Podcast, where Bal and Taj were able to discuss their personal experiences. They regularly have specialists and professionals within their field to discuss the causes and impact of their subject areas. Service providers regularly approached the growing Changing Suits team to understand the cultural nuances which have long prevented the South Asian community using their much needed services.

The organisation grown to continue to help the community break the taboos and also support service providers to reach the community.
Our Journey So Far...
July 2021 Changing Suits founded by Bal and Taj

Aug 2021 First release of the Changing Suits Podcast

Dec 2021 First podcast with a guest speaker

Mar 2022 First podcast with a local organisation

Apr 2022 First podcast with a national organisation

Oct 2022 Breast Cancer Awareness in the South Asian community event

Dec 2022 Monthly Online Support Groups launched

Feb 2023 Monthly Wellbeing Workshops launched

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Changing Suits is a community based organisation that aims to break through cultural barriers and get the South Asian community to engage with support services. The organisation was founded by sisters Bal and Taj, after they realised socio-cultural issues which they were struggling with, and discussing between themselves, were similar to those being faced by their friends and family.

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Care to Translate is a digital medical translator for healthcare staff and patients. The app serves as a complement to human interpreters in healthcare and is available 24/7 in your smart device.

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A digital medical translator for healthcare staff and patients.

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Breastfeeding experiences of Black Mothers (UK, July 2023)

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Breastfeeding experiences of Black Mothers (UK, July 2023)

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Lorna, Doula & CEO of Black Mamas Birth Village which is a safe space and community for Black mamas-to-be

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Breastfeeding Webinar Series: 3 - Lorna Phillip

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Vulnerable migrants such as asylum seekers and refugees may be relocated at short notice. These Pregnancy Care Transfer Cards have been adapted with thanks from a concept developed by Surrey Heartlands Local Maternity and Neonatal System and are available in 28 languages.

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Pregnancy Care Transfer Card

We know that vulnerable migrants, including refugees and asylum seekers, are at greater risk of poorer maternity and neonatal outcomes.
We are working together across the region to reduce these health inequalities, making birth safer and more personalised.

Vulnerable migrants such as asylum seekers and refugees may be relocated at short notice. Language and communication barriers can increase the chance that pregnant women and pregnant people experience delays in accessing appropriate maternity care.

These Pregnancy Care Transfer Cards have been adapted with thanks from a concept developed by Surrey Heartlands Local Maternity and Neonatal System and are available in 28 languages.

These transfer cards aim to improve safety by supporting pregnant women and pregnant people to access maternity care as soon as possible after they move. The cards are also designed to facilitate the sharing of pregnancy records between healthcare professionals to ensure seamless care which is known to optimise outcomes.

We recommend that use of these cards is ideally discussed with pregnant women and pregnant people in conjunction with a suitable interpreter.
We hope you find these resources helpful and welcome your feedback to england.sematernity@nhs.net You are welcome to share this content widely throughout your networks, please ensure the NHS England South East Regional Maternity and Neonatal Team is credited wherever possible.

If you'd like to order a print run of these cards in any of the languages shown, please contact: creative@nhscreative.org

The Pregnancy Care Transfer Cards can be downloaded in the language of your choice:

This website uses cookies to improve your experience. If you continue to use this site, you agree with it.

Ok

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Pregnancy Care Transfer Card We know that vulnerable migrants, including refugees and asylum seekers, are at greater risk of poorer maternity and neonatal outcomes. We are working together across the region to reduce these health inequalities, making birth safer and more personalised. Vulnerable migrants such as asylum seekers and refugees may be relocated at short notice.

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Understanding Anti-Racism through the lens of Maternity

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Understanding Anti-Racism through the lens of Maternity

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Walking in their Shoes (WITS) Handbook 2023

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UK Based EDI Consultants

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How to collect personal data on sex and transgender identity

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How to collect personal data on sex and transgender identity

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Introduction

Organisations need to record information on the sex of individuals - whether they are male or female - for all sorts of everyday reasons, including getting the information needed to provide services fairly and safely, and to understand the characteristics and needs of populations. In recent years this routine question has become confused and fraught. Many organisations have been told that they should not record data on sex, but only on self-identified gender. This advice is wrong. Organisations can record and collect clear data on sex wherever it is needed.

This guide provides workable advice for organisations in the public, private and voluntary sectors, and for those setting data standards or providing templates to support others to collect data. It is intended to help you comply with:

Data Protection Act and GDPR

Equality Act 2010

Human Rights Act 1998

Gender Recognition Act 2004.

The best way to ensure data quality, avoid confusion, conflict and upset, and reduce the risk of liability, is to be clear about what information is needed, and why. Standard data-protection principles require you to ensure that information is:

used fairly, lawfully and transparently

used for specified, explicit purposes

used in a way that is adequate, relevant and limited to what is necessary

accurate and, where necessary, kept up to date

kept for no longer than is necessary

handled in a way that ensures appropriate security, including protection against unlawful or unauthorised processing, access, loss, destruction or damage.

This guide applies these principles to the question of how to collect data on people's sex and on whether they are transgender. It is intended in particular for data-protection officers and those responsible for data-protection compliance within organisations. But it will also be useful for anyone thinking about how to collect information on whether people are male or female.

Examples of collection of sex data

Official statistics almost always include data on sex.

Employers are recommendedby the Equality and Human Rights Commission to collect data on sex as part of their equality monitoring. Larger employers must publish data on the pay gap between male and female employees.

Public-sector bodies have a responsibility to advance equal opportunities. Collecting data helps them understand the impact of their policies and practices on women and men.

Schools are required to collect data on pupils' sex.

Universities are required to provide data on students to Higher Education Statistics Agency. This includes information on sex.

Definitions and concepts

Sex

Sexmeans being male or female. It is an objective, biological characteristic about a person that is observed at birth. Everyone has a biological sex and it does not change. This is recognised in law in the UK. Whether someone is male or female is usually readily observable and is not considered to be sensitive information. It is among the pieces of ordinary data (along with name, age, date of birth, national insurance number and so on) that an employer can hold without permission. Collecting data on sex is often legally required or officially recommended.

For clarity, sex is sometimes referred to as "sex recorded at birth". But it is worth noting that around the world over 166 million children, mainly in the least developed countries, do not have birth-registration documents. Some people who come to the UK, particularly as refugees, did not have their sex officially recorded at birth. Their sex is no less certain because of a lack of a birth certificate.

A tiny number of people are born with variations in sex development that may cause their sex to be incorrectly recorded at birth (misrecording happens more often in developing countries). These individuals are still either female or male.

What about "gender"?

Gender can mean different things, so it is best avoided as a term in data collection. If you need to know about a person's sex, that is what you should ask about.

People may say "gender" because they think the word "sex" sounds rude. For example, the "gender pay gap" is really the "sex pay gap".

Some people use "gender" as a self-defined characteristic whereby someone male might identify as female or a woman, or vice versa (or as "non-binary" or some other identity). "Gender" is also used to refer to ideas about the differing social roles expected of men and women.

Some people believe that everyone has an inner "gender identity", a "deeply felt internal and individual experience of gender", and that when a person's beliefs about their gender identity conflict with their sex, it is the gender identity that determines the person's "true self". This is not a concept that is recognised in UK law or defined by the UK government. In general, organisations should avoid asking questions about people's deeply felt internal experiences unless they have a good reason to do so. They should be very careful how they store and use any such data.

Being transgender

Some people identify as "transgender" (or transsexual or trans). For example, a man may change his name and adopt feminine dress and hairstyle, and may take hormones or have surgery to make his body look less male. He may identify as a "transwoman" or "trans woman". A woman may change her name and adopt masculine dress and hairstyle, and may take hormones or have surgery to make her body look less female. She may identify as a "transman" or "trans man".

Other terms of self-identification include non-binary, agender, gender-fluid, gender-queer, androgyne, intergender, ambigender, polygender, transmasc and transfemme. All of these are self-declared designations. They have no legal basis and do not change a person's sex.

People with a gender-recognition certificate

Around 5,000 transgender people in the UK have a gender-recognition certificate (GRC) which allows them to be recognised as the opposite sex for some legal purposes, such as marriage and pensions. They can get a new birth certificate which shows them as the opposite sex.

Getting a GRC does not require that someone has surgery, and does not mean that their actual sex has changed. For example, "transmen" who have not had their sex organs removed can get pregnant and give birth. Having a GRC does not change someone's status as a mother or father.

The Gender Recognition Act 2004 provides that if someone has received a GRC, information about their actual sex becomes protected information. If you find yourself handling the information of someone you have learned in an official capacity has a GRC (for example, as their employer or as a service provider) you will need to comply with Section 22 of the Gender Recognition Act 2004 (for details on how to do this, see Appendix).

Sometimes the sex that is shown on a person's birth certificate (which may have been reissued to reflect their GRC) is referred as "legal sex". This is the sex variable that HM Revenue & Customs requires organisations to record for employees in relation to tax and pensions.

Sometimes organisations believe that they should only collect "legal sex" and not "biological sex", or ask only about gender identity. This is not true. If you need information about people's actual sex, that is what you should ask for.

Planning to collect information

Whether you are setting up a data system or making changes to an existing system, you should start by considering what information you need and why. It is good idea to document the purpose of the data, so you can justify its collection and use.

Why do you want to collect data on people's sex?

Is it their actual sex you need to know, or their sex as modified by a gender-recognition certificate (GRC)? (These differ for only one person in every 10,000.)

How accurate does the information need to be? (Does it matter if a small proportion of people give the wrong answer?)

How complete does the information need to be? (Do you need to collect the information from everyone or can the question be voluntary?)

Common reasons for collecting and using information on sex

Information on people's sex is needed for many purposes:

because it is required by law - for example, schools must record pupils' sex

for healthcare and medical records -for correct diagnosis, screening, analysis of test results, treatments, dosages and so on

for operational reasons - for example, where a person's sex is relevant to their job (such as a bra fitter or women's refuge worker) or where there are sex-based rules about who can access a particular service

for sports - to decide on eligibility for competitions and to assess and record athletic performance

for safeguarding - where an organisation places staff in positions of care towards children and vulnerable people

for social statistics - for example, recording and analysing economic data by sex

for equality monitoring - for example, to avoid sex discrimination in recruitment processes or to monitor workforces in order to spot patterns of discrimination

in order to prevent, investigate or prosecute crime.

You may need to consider whether the information you want to collect is actual sex or sex as modified by a GRC. In almost all cases, if you are asking about sex it is actual sex that is the variable of interest.

What about identity-matching?

One common use of sex data is for identity-matching, for example asking for a person's name, sex, and date of birth to match them with the correct record in a database.

In the past, matching a person's appearance to their recorded sex was a routine part of checking whether individuals "owned" a unique identity (such as a bank account or passport). Someone with a male voice and a female name, or someone who looked like a man but had a female driving-licence number, might raise a red flag.

The use of sex data in this way has largely been superseded by technology such as PINs, fingerprints, voice recognition, iris scanning and automated facial recognition. It is rarely necessary to include sex as a variable in routine identity-matching. Using sex data or appearance for identity-matching in a situation where sex does not matter (such as at the bank) can cause embarrassment to transgender people. Try to avoid this by using other identity-verification methods.

There are situations where a person's sex is needed for identity-matching, for example when searching for a missing person or criminal suspect.

Reasons for collecting information on whether people are transgender

You might also want to know whether individuals are transgender. Reasons include:

equality monitoring

providing specific services to transgender people

carrying out research to understand the prevalence, characteristics and needs of transgender people.

Designing a question on sex

A simple question about sex

The easiest way to ask about sex is to ask a simple question and expect a straightforward answer.

You may not need to provide any further clarification. For 99.99% of people the answer will be the same whether they answer with their sex as observed at birth, or their sex as modified by a gender-recognition certificate (GRC). That may be accurate enough for your purposes. For example: a museum develops a questionnaire for visitors to collect statistics about the characteristics of its audience. It decides that the simple question is adequate.

For equality monitoring (which looks at anonymised patterns in data), this level of accuracy is likely to be adequate. The simple question without further clarification is the best option, as there is a live legal case about whether the protected characteristic "sex" in the Equality Act 2010 relates to a person's actual sex or to their sex as modified by a GRC. A legislative proposal to clarify this question is also being considered by the government.

Questions with explanations

Sometimes it is important that everyone answers the question accurately. A person with a GRC needs to know whether to answer with the sex it says on their certificate or with their actual biological sex.

For social and medical statistics, accuracy can be important and even small numbers of misclassified cases can cause problems. Professor Alice Sullivan, Dr Kath Murray and Lisa Mackenzie point out that small numbers of people identifying as the opposite sex can have significant implications for research findings and for assessing policy interventions. These errors can make a big difference when the baseline category is small, such as for gay, lesbian and bisexual people. The Equality and Human Rights Commission says:

"When data are broken down by legal not biological sex, the result may seriously distort or impoverish our understanding of social and medical phenomena."
Kishwer Falkner (2023). Letter to Kemi Badenoch.

Accurate classification is also crucial when it comes to healthcare. In the US a case was reported of a "man" who came into hospital with severe abdominal pains. The patient was in fact a pregnant woman, already in labour. Treatment was delayed and the baby was stillborn. The child might have been saved if it had been obvious from medical records that the patient was female. In the UK, NHS records do not accurately record a person's sex - so it is possible that a similar tragedy could happen here.

In sport, too, it is actual sex, not sex as modified by a GRC, that matters.

For purposes that require data to be accurate for each individual, it is good practice to provide an explanation of what is being asked. This also allows you to record clear "metadata" - a description of the data that is stored alongside the records to help users understand them.

For example:

if you are collecting data for the purposes of tax and pension records, the information needed is "legally recorded" sex (which may be modified by a GRC).

if you are collecting data for the purposes of an individual's healthcare or for eligibility for sex-separated sports, the information needed is actual sex and accuracy is crucial.

For 99.99% of individuals these will be the same, and in practice hardly anyone will need the explanation. It can be footnoted with an asterisk, or placed behind a button on a computer form.

When you provide an explanation of the information being requested, this also allows you to get the data subject's consent for using it. Even if they give the wrong answer, it has been made clear to them that they have been asked for their actual sex (and told why that information is needed), and that this is not a situation where they can expect their sex to be kept secret or lied about.

When you need to know about actual sex

Use this question when you need to know people's sex accurately, such as in medical and safeguarding settings, and where sex-based rules apply for the dignity and privacy of others.

When you need to know about sex as legally recorded

Use this question if you need to know an adult's sex as legally recorded, such as for the purposes of tax and pension records and returns to HMRC.

Be aware that the sex shown on a person's passport, driver's licence or other records may not be accurate, as some organisations allow people to record their self-identified gender.

"Prefer not to say"

Depending on the context, you may decide that responding to the "sex" question is voluntary or to include a "prefer not to say" option. This will mean the data is incomplete, but people who do not wish their sex to be recorded in this context can simply opt out. For example, the UK Sports Councils Equality Group says:

"No individual is compelled to provide any information to a sports organisation. However, failure to provide such information would mean that person may not be able to compete in the category of their choice. Sports should provide options for those people who prefer not to advise of their sex or gender."
Sports Councils Equality Group (2021). Guidance for Transgender Inclusion in Domestic Sport.

You should not offer either an "other" or an "intersex" option. The term "intersex" is used for people who have a difference of sex development (DSD) and they are, like everyone else, still male or female. Such personal medical information should not be requested except in healthcare settings or for rulings on eligibility for elite sports.

Ask clear questions

Organisations may be unsure whether they are legally allowed to ask about sex. They may worry that some people will feel uncomfortable or offended by such a question, or think that people would prefer to answer with their self-identified gender.

Such concerns make it tempting to frame questions about sex ambiguously. But this will produce poor-quality data, contravene data-protection principles and increase the risk of inaccurate data being used for decision-making where it matters.

This question is ambiguous. Most people will understand it as asking for their sex, and will answer accordingly. But some will answer with their self-identified gender.

The Department for Education recently withdrew a data definition of "gender" and replaced it with one that states "sex". The Higher Education Statistics Authority has also clarified that it collects data on sex, not "gender".

Without any explanation of what the question is about, this question is ambiguous. Most people will understand it as asking for their sex, and will answer accordingly. But some will answer with their self-identified gender.

This question is ambiguous. Most people will understand it as asking for their sex, and will answer accordingly. But some will answer with their self-identified gender.

Don't beat around the bush

Some organisations try to avoid asking the sex question altogether by asking a two-part question that starts with gender identity and then asks if this is the same as the "gender registered at birth".

This is hard to understand and out of line with data-protection principles. It will yield poor-quality data.

In some cases, the answers to these two questions can be combined to work out what sex a person is. But this approach does not conform with data-protection principles. If you want to know and record what sex someone is, then that is what you should ask them.

Moreover, if someone answers "non-binary" to the first question, there will be no way to work out their actual sex. If they do not answer the second question or tick prefer not to say, their sex will also be uncertain, even though they may think that they have stated their sex by answering "male" or "female" to the first question.

Good practices

Apply ordinary data-protection principles Be clear why you are collecting the data Ask "What is your sex? Male or Female?" Explain the terms if necessary Consider a "Prefer not to say" option
Designing a question about transgender identity

If you want to know whether people have a transgender identity, you should ask this separately from the sex question. Responding should be voluntary.

Whether someone is transgender is sensitive data. You should ask about this only if you have a good reason and have considered the privacy implications of collecting the data. Your reason might be:

operational - to identify transgender people as a population with specific needs

statistical - because you want to know how many people identify as trans in a particular population

for equality monitoring - "gender reassignment" is a protected characteristic and you may choose to monitor it (although you should consider whether this is possible in practice).

Appearing "inclusive" or wanting respondents to "feel seen" are not good enough reasons to collect data, especially sensitive data. Data-protection principles require that there is a lawful basis for collection, and that the information is used only for purposes that have been clearly specified in advance.

Should you include a transgender question in equality monitoring?

"Gender reassignment" is a protected characteristic in the Equality Act. However, this does not mean you must collect information on this characteristic. The small number of transgender individuals in the population means that data collected through routine equality monitoring is likely to be unusable as it would identify individuals, especially if it is broken down into categories such as job grade or work site.

The EHRC Employers' Code of Practice states:

"Monitoring numbers of transsexual staff is a very sensitive area and opinion continues to be divided on this issue... If employers choose to monitor transsexual staff using their own systems, then privacy, confidentiality and anonymity should be paramount."

Reflecting this, until recently the civil service did not monitor the protected characteristic of gender reassignment, but stated:

"Instead departments and agencies should consider other approaches, such as specific initiatives to meet different needs of transsexual people, in order to measure progress on trans equality."

It did include questions in the anonymous Civil Service People Survey about whether "gender reassignment" or "perceived gender" was one of the possible causes of discrimination, bullying and harassment.

Since 2016, Stonewall has promoted the collection of data on transgender identity. If you do decide to collect such information, we recommend that you treat it as special-category data (like sexual orientation and religion; see page 20). You should provide your data subject with sufficient information to understand how you are processing their special-category data and how long you will retain it for.

Questions about transgender status or gender identity should:

be voluntary

include details of how the information will be used

allow analysis without compromising confidentiality

never be mixed with data on sex - this will make the whole dataset both sensitive and ambiguous.

There is no standard way to ask people if they identify as transgender, and the recent census for England and Wales demonstrates a central difficulty. If non-trans people are asked whether their gender identity is the same as or different from their sex as registered at birth, the number who will be confused and will unintentionally indicate that they are transgender when they are not may overwhelm the data from the small number of people who genuinely identify as transgender. Your survey design should seek to avoid this. A simpler question is better.

If you are designing a question about trans identity, think about the age and background of respondents and make sure you are using language they will understand. Even if your colleagues are familiar with the terminology for transgender identities, your users are unlikely to be. This is a particular concern for people with learning difficulties or who speak English as a second language.

If you are asking about transgender status or gender identities as well as sex, aim to design your questions to make self-contradictory responses impossible (such as responding to a question about sex with "female" and a question about "gender identity" with "transwoman"). If this is impossible, decide in advance how such responses will be handled.

Some options for a transgender question

Questions about trans identity

The most straightforward approach is simply to ask if the respondent is trans.

This question was developed by Advance HE for universities.

This question was developed by Stonewall.

For specific purposes such as research, you may wish to provide an additional field to find out what specific gender-identity term people use to describe themselves. But for equality monitoring, a yes/no answer is enough.

Questions that relate directly to the Equality Act

Some organisations have developed questions that directly relate to the definition of the protected characteristic of "gender reassignment" in the Equality Act. These are intended for the purposes of equality monitoring. But they are legalistic, difficult to understand and not widely used.

This question was developed by the Equality and Human Rights Commission (but the organisation itself does not use the question).

This question was developed by the Social Market Foundation.

Bad practices

Asking about "gender identity" instead of sex Mixing information from different categories Collecting information on trans identity carelessly Using appearance for identity matching Corrupting your whole data set for "inclusion"
Appendix: Relevant legislation

Data protection

The UK General Data Protection Regulation (GDPR) provides the framework for lawful use of personal data. The Data Protection Act 2018 says that all personal data should be collected and processed following data-protection principles to make sure the information is:

used fairly, lawfully and transparently

used for specified, explicit purposes

used in a way that is adequate, relevant and limited to what is necessary

accurate and, where necessary, kept up to date

kept for no longer than is necessary

handled in a way that ensures appropriate security, including protection against unlawful or unauthorised processing, access, loss, destruction or damage.

Special-category data

Under the UK GDPR and Data Protection Act 2018 some personal information is classed as special-category information and requires more stringent safeguards. Data on a person's religion or belief and sexual orientation is classed as special-category. Data on their sex is not.

The Information Commissioner's Office says that information on a person's transgender status or "gender identity" may involve special-category data, depending on the circumstances. This might arise if the information reveals specific details about the person's health status or medical care, or an organisation uses it to make inferences about health (such as diagnosis of gender dysphoria, or surgery or treatment).

Information that someone believes or does not believe in the idea of gender identity relates to beliefs, and is therefore likely to come under the definition of special-category data.

The ICO recommends:

"Organisations should be careful to think about fairness when handling [information about trans identification], and we would expect them to treat it with an appropriate level of sensitivity. They could decide to treat it as if it were special category data, to help them make sure they have a good reason for using it and comply with the fairness principle - although this isn't an explicit requirement. This would mean they treat it in a similar way to other similarly sensitive data such as sexual orientation."
Information Commissioner's Office (2020). Policy on the handling of Gender Recognition Certificate cases.

The Equality Act 2010

The Equality Act requires that organisations do not discriminate against people, including workers, employees and customers, based on nine protected characteristics. These include sex and "gender reassignment". Sex is defined as being male or female. Gender reassignment is defined in these terms:

"A person has the protected characteristic of gender reassignment if the person is proposing to undergo, is undergoing or has undergone a process (or part of a process) for the purpose of reassigning the person's sex by changing physiological or other attributes of sex.

"A reference to a transsexual person is a reference to a person who has the protected characteristic of gender reassignment."

Under the Public Sector Equality Duty, public bodies are required to eliminate unlawful discrimination, harassment and victimisation, advance equality of opportunity and foster good relations between those who share a protected characteristic and those who do not.

Public bodies covered by the specific equality duties are required to publish regular reports that include data relating to people who share a protected characteristic. Many organisations not covered by this also collect equality data to understand how they are doing. Large employers are required to publish "gender" (meaning sex) pay-gap data.

Equality monitoring is a lawful basis for collecting special-category data. But the information must be fit for that purpose and used only for that purpose. Employers and other organisations should therefore not include questions about transgender identity simply for the sake of being "inclusive" without thinking through whether they can analyse the data without compromising confidentiality. The small number of transgender people in the population can often make confidentiality impossible.

Organisations should consider whether they are undertaking indirect discrimination if they require users, staff or potential staff to answer mandatory personal questions about their gender identity, or questions which reveal their beliefs about gender identity.

It will not be unlawful indirect discrimination to have a mandatory sex question wherever this information is needed. Although some people with the protected characteristic of "gender reassignment" may feel that it is a detriment to them to be asked this question, as it makes them feel uncomfortable, asking it will be justified by the need to collect sex information for purposes such as equality monitoring, safeguarding and statistical analysis. People should not be excluded from accurate data collection about their sex because they have other protected characteristics.

Privacy and human rights

Article 8 of the Human Rights Act provides that:

1. Everyone has the right to respect for his private and family life, his home and his correspondence.

2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.

In general, managing personal data in line with data-protection principles will be consistent with respect for the human right to privacy.

Previous advice given by the Equality and Human Rights Commission stated that requesting, gathering and collating data on individuals' biological sex could be in breach of Article 8 of the ECHR and the Human Rights Act 1998:

"Forcing trans employees or service users to disclose their sex as assigned at birth would be a potential violation of their human rights, particularly their right to privacy and dignity under Article 8."

A legal opinion on this statement from Aidan O'Neill KC, commissioned by Woman's Place UK, disagreed and noted that "privacy rights are not absolute and individuals do not have a universal veto on what can and cannot be asked of them".

"Although the collation (and potentially the disclosure) of information and data about people's private lives (which would include, details such as their name, age, sex, address, nationality, racial or ethnic origins, marital status, sexual orientation, sexual history, gender identity, health records, credit history, political affiliation, voting record, financial health, criminal record, whether charges and/or convictions) may be said to engage the rights protected by Article 8 ECHR, it will constitute (unlawful) interference with those rights provided that the collation and/or disclosure is done in accordance with law and separately may be said to be "necessary" within the context of the proportionality test: that is to say that the collation and/or disclosure must involve the least interference with the right to respect for private and family life which is required for the achievement of the legitimate aim pursued. "
Woman's Place UK (2020). 'EHRC misrepresents the law on collecting sex data'.

The UK Sports Councils Equality Group advises sports governing bodies and sports organisations that they can collect data on sex:

"Categorisation by sex is lawful, and hence the requirement to request information relating to birth sex is appropriate."
Sports Councils Equality Group (2021). Guidance for Transgender Inclusion in Domestic Sport.

The Gender Recognition Act
Around 0.01% of the population (around one person in 10,000) have a gender-recognition certificate (GRC). If someone has a GRC, information about their actual sex is covered by specific legal protections under Section 22 of the Gender Recognition Act 2004. This makes it a criminal act to reveal this information apart from where there are explicit exceptions.
Under Section 22 of the GRA it is a criminal offence for a person who has acquired protected information in an official capacity to disclose the information to any other person.

"Protected information" means:

information that someone has made an application for a GRC

information about the actual sex of a person who has a GRC.

A person acquires protected information in an official capacity if they get it:

as a constable or the holder of any other public office

as an employer, or prospective employer, or staff member of an employer

in connection with their functions as a member of the civil service

or in connection with:

the functions of a local authority, public authority or voluntary organisation

the conduct of business

the supply of professional services.

This covers most forms of official and administrative data collection.

Exceptions to Section 22 of the Gender Recognition Act

It is not an offence under this section to disclose protected information relating to a person if:

the information does not enable that person to be identified

that person has agreed to the disclosure of the information

the person by whom the disclosure is made does not know or believe a GRC has been issued.

Apart from where the information is used unwittingly, with consent or anonymously, there are specific and limited exceptions which allow for disclosure:

in accordance with an order of a court or tribunal

for the purpose of instituting, or otherwise for the purposes of, proceedings before a court or tribunal

for the purpose of preventing or investigating crime

to the Registrar General for England and Wales, the Registrar General for Scotland or the Registrar General for Northern Ireland

for the purposes of the social-security system or a pension scheme

for purpose of obtaining legal advice

in relation to organised religion (such as enabling any person to make a decision whether to officiate at or permit a marriage or in relation to employment, office or post, or membership of or participation in an aspect of organised religion)

to a health professional, for medical purposes; and with a reasonable belief that the subject has given consent to the disclosure or cannot give such consent

on behalf of a credit reference agency

by an insolvency practitioner.

While the threat of a criminal penalty for disclosing information on a person's sex is daunting, fewer than 0.01% of the population have a GRC, and there has never been a criminal prosecution using this part of the Gender Recognition Act since it became law.

The key risk that the GRA creates is that an organisation finds it has collected data on both on a person's actual ("biological") sex and their sex as modified by a GRC (such as for tax purposes), and linked these in a data system that many people have access to. With these two pieces of data, the fact that someone has a GRC may be either inferred or volunteered by the individual to explain the difference. This information, and the information about the person's actual sex, then becomes protected information. Using it creates a risk of criminal liability for organisations.

This is a particular problem for large organisations that record sex as a part of a centralised "spine" of identity data on individuals. This information is likely to be widely accessible and used for many purposes. If it is possible to find out that a person has a GRC from their record in the data spine, this creates a risk across the organisation. At the same time, it can be crucial to be able to know people's sex accurately in many situations.

To avoid legal risk, organisations typically do one of the following:

1. collect biological sex as part of core personal data and ask for consent to disclose it as a condition of using the service

2. collect biological sex and include a "prefer not to say" option so that those with a GRC can avoid giving information on their sex

3. Collect legal sex on the main data spine (or don't collect sex at all) and then confirm individuals' biological sex when needed

4. mark the records of people with a gender-recognition certificate as protected (put them in a locked filing cabinet or electronic equivalent).

Large organisations that mainly deal with people's information rather than their bodies, such as the Department for Work and Pensions and the Information Commissioner's Office, tend to take the protected records option. The Information Commissioner's Office has a sophisticated policy for immediately isolating information that relates to a person with a GRC. The Department of Work and Pensions places the records of someone with a GRC in a special customer-records system.

The NHS has taken the option of not recording biological sex accurately in its core data (even though this data is clearly needed for healthcare purposes and there is an explicit exception to Section 22 to allow health professionals to disclose a person's sex for medical purposes). This decision has consequences right across the healthcare system. For example, radiographers must ask all patients, including patients whose medical records say male, for their "sex recorded at birth" in order to rule out the possibility of pregnancy.

These elaborate (and flawed) systems cannot be replicated by every small organisation where sex matters. And in many of them, staff need to be able to have immediate and clear access to information on a person's sex, which cannot be held in a locked filing cabinet or made unrecordable.

This means that in most cases when information will not be anonymised, it is safest to take the consent approach, that is, to explicitly collect information on biological sex and obtain consent for its disclosure for the range of purposes for which it is needed.
Pros and cons of different approaches

Collect actual sex and ask for consent
Organisation has accurate data on everyone's sex that it can use for the purposes it needs

Difficulty in obtaining consent with a legacy system and existing data

Collect actual sex with consent and include a "prefer not to say" option
Data on sex remains accurateEasy for anyone who does not wish their sex to be recorded to opt out of having it recorded

A high rate of "prefer not to say" reduces quality for statistical purposes

Collect actual sex only as needed, and keep legal sex as the variable on the data spine
Sex for most people is accurate, and privacy for those with GRCs is maintained

Individual data is misleading where accurate sex data is needed on individuals (such as for healthcare or medical research purposes)

Mark the records of people with a GRC as protected
Privacy for those with GRCs is maintainedSex is recorded accurately for all

Protected records can make it difficult for people to access services easily

This publication draws on guidance produced by the Information Commissioner's Office, the Equality and Human Rights Commission, the Office for Statistics Regulation and Stonewall, and on Alan Henness' Sex Not Gender project.

We are grateful to Professor Alice Sullivan, Alan Henness, Dr Michael Biggs, Naomi Cunningham and Tim Pitt-Payne KC for providing input and comments.

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Advice on the questions you should ask when collecting personal data on sex and transgender identity. See also our template letter of complaint to send when you are concerned that an organisation is misusing your data by confusing sex and gender.

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NICE -National Institute for Health & Care Excellence (UK)

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NICE -National Institute for Health & Care Excellence (UK)

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Health inequalities are differences in health across the population, and between different groups in society, that are systematic, unfair and avoidable.

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Cardiovascular disease: identifying and supporting people most at risk of dying early (PH15) aims to reduce the number of people who are disadvantaged, dying prematurely by ensuring people have better access to flexible, well-coordinated treatment and support.

Hypertension in adults: diagnosis and management (NG136) covers identifying and treating primary hypertension (high blood pressure) in people aged 18 and over, including people with type 2 diabetes.

Cardiovascular disease: risk assessment and reduction, including lipid modification (NG238) covers identifying and assessing risk of cardiovascular disease (CVD) in adults without established CVD. It covers lifestyle changes and lipid-lowering treatment (including statins) for primary and secondary prevention of CVD, and includes guidance for people who also have diabetes or chronic kidney disease.

Hypertension in adults (QS28) covers managing hypertension in adults. It includes diagnosis and investigations, treatment and specialist referral.

Cardiovascular disease and lipid modification (QS100) covers identifying and assessing cardiovascular risk in adults and treatment to prevent cardiovascular disease.

Tools to help put our guidance into practice

Hypertension in adults: diagnosis and treatment - a 2-page visual summary on the recommendations for diagnosing and treating hypertension.

How do I control my blood pressure? Lifestyle options and choice of medicines - Patient decision aid and user guide and data sources.

Taking a statin to reduce the risk of coronary heart disease and stroke: a patient decision aid.

Hypertension in adults: diagnosis and management (NG136) baseline assessment template can be used to evaluate current practice and plan actions to meet the recommendations.

Cardiovascular disease: risk assessment and reduction, including lipid modification (NG238) baseline assessment template can be used to evaluate current practice and plan actions to meet the recommendations.

Hypertension in adults (QS28) Quality standard service improvement template helps providers make an initial assessment of their service compared with a selection of quality statements, recording an action pklan and monitoring quality improvement over time.

Cardiovascular risk assessment and lipid modification (QS100) Quality standard service improvement template helps providers make an initial assessment of their service compared with a selection of quality statements, recording an action plan and monitoring quality improvement over time.

Resource impact report and template associated with Hypertension in adults: diagnosis and management (NG136) may be helpful with business case development / costings.

Case studies

A community-centred pilot programme by the Race Equality Foundation to address health inequalities through targeted blood pressure awareness and testing in black African and Caribbean males. Community based approaches to addressing high blood pressure with black African and Caribbean men.

Local Clinical Effectiveness Group data demonstrated that blood pressure was not as well controlled in this group of patients compared to the rest of the population in City and Hackney CCG. Pharmacist led hypertension review project in Black (African and African-Caribbean origin) patients - Hackney CCG.

The East Berkshire CCG Medicines Optimisation Team used systematic audit to support practices in finding people who either had hypertension or were at risk of developing hypertension. Systematic case finding of people with hypertension - East Berkshire.

Further resources

NICE Clinical Knowledge Summaries (CKS) - hypertension provide primary care practitioners with a readily accessible summary of the current evidence base and practical guidance on best practice.

Read our recommendations for research on Hypertension in adults (NG136): diagnosis and management

NICE-endorsed resources

NHS England Statin intolerance pathway brings together multiple NICE guidance and technology appraisals into a single document, to support a consistent approach to the management of statin intolerance.

NHS England Lipid management national treatment algorithm and pathway - a summary of national guidance for lipid management for primary and secondary prevention of cardiovascular disease (CVD).

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Our health inequalities guidance supports strategies that improve population health as a whole, while offering particular benefit to the most disadvantaged

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Improving health care for patients with learning disabilities and/or autism

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Improving health care for patients with learning disabilities and/or autism

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Professionals need to practice their listening skills. Our books will help them to listen to you.

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Good communication is at the heart of safe, effective and compassionate health care.

Books Beyond Words offer an accessible, evidence-based reasonable adjustment that can improve communication between health care professionals and patients with learning disabilities and/or autism.

Talking through the pictures in a Beyond Words story together enables health professionals to find out what their patient understands and how they feel about a situation. It allows patients to lead the conversation at their own pace, ask appropriate questions and share any concerns. This in turn enables professionals to provide appropriate information and reassurance and obtain truly informed consent.

Using Books Beyond Words in interactions with patients:

builds understanding and trust between patient and practitioner;

reduces patient anxiety;

empowers patients to be more involved in decision-making and to take more control of managing their own health;

improves health care outcomes and reduces health inequalities.

Empowering people to shape the support you give

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Stories for health & social care - Beyond Words

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Good communication is at the heart of safe, effective and compassionate health care. Books Beyond Words offer an accessible, evidence-based reasonable adjustment that can improve communication between health care professionals and patients with learning disabilities and/or autism.

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The Equality Delivery System (EDS) is a system that helps NHS organisations improve the services they provide for their local communities and provide better working environments, free of discrimination, for those who work in the NHS,

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The Equality Delivery System (EDS) is a system that helps NHS organisations improve the services they provide for their local communities and provide better working environments, free of discrimination, for those who work in the NHS, while meeting the requirements of the Equality Act 2010. The EDS was developed by the NHS, for the NHS, taking inspiration from existing work and good practice.

Background to the EDS

The EDS was first launched for the NHS in November 2011. In November 2012, Shared Intelligence published their report ' Evaluation of the equality delivery system for the NHS' which looked at how the EDS had been adopted across NHS organisations. Based on this evaluation and subsequent engagement with the NHS and key stakeholders, a refreshed EDS - known as EDS2 - was made available in November 2013.

A review of the EDS2 was undertaken to incorporate system changes and take account of the new system architecture. Through collaboration and co-production and taking into account the impact of COVID-19, the EDS has been updated and EDS 2022 is now available for live testing during 2022/23.

The main purpose of the EDS was, and remains, to help local NHS systems and organisations, in discussion with local partners and local populations, review and improve their performance for people with characteristics protected by the Equality Act 2010. By using the EDS 2022, NHS organisations can also be helped to deliver on the Public Sector Equality Duty.

EDS 2022 is aligned to NHS England's Long Term Plan and its commitment to an inclusive NHS that is fair and accessible to all. The EDS 2022 suite of documents and supporting resources are available at the bottom of this page.

EDS 2022: Obligations on NHS Commissioners and Providers

EDS 2022 is a generic system designed for both NHS commissioners and NHS providers. As different systems apply EDS 2022 outcomes to their performance, NHS organisations should do so with regard to their specific roles and responsibilities.

EDS 2022 implementation by NHS provider organisations is mandatory in the NHS Standard Contract. EDS 2022 implementation will continue to be a key requirement for all NHS commissioners. Detailed information on how to implement EDS 2022 is contained in the EDS 2022 Technical Guidance.

EDS 2022 reporting template

Implementation of EDS 2022 is a requirement of both NHS commissioners and NHS provider organisations. In light of the inclusion of EDS 2022 in the NHS standard contract, NHS organisations should use the EDS 2022 reporting template to produce and publish a summary of their findings and implementation.

The EDS 2022 reporting template is designed to give an overview of the organisation's most recent EDS implementation. Once completed, the report should be accessible to the public, and published on the organisation's website.

EDS 2022 documents and guidance

* EDS 2022 Technical Guidance
* EDS 2022 Reporting Template
* EDS 2022 Domain 1 Case Study Template
* EDS 2022 Domain 2 Case Study Template
* EDS 2022 Ratings and Score Card guidance

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The Equality Delivery System (EDS) is a system that helps NHS organisations improve the services they provide for their local communities and provide better working environments, free of discrimination, for those who work in the NHS, while meeting the requirements of the Equality Act 2010.

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Black maternal health care and community groups podcast (30 mins)

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Black maternal health care and community groups podcast (30 mins)

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How are community groups bridging some of the gaps between Black mothers and health and care services?

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Key:

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.

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Black Maternal Health Care And Community Groups | The King's Fund

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How are community groups bridging some of the gaps between Black mothers and health and care services? Join Siva Anandaciva, Benash Nazmeen, Amanda Smith and Chrissy Brown to find out.

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Resource pack to support the care of vulnerable migrants using maternity and neonatal services

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Resource pack to support the care of vulnerable migrants using maternity and neonatal services

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April 2024

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Tommy's Midwives Helpline for Black and Black Mixed-Heritage women

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Tommy's Midwives Helpline for Black and Black Mixed-Heritage women

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Black women are at higher risks of complications during pregnancy, which is why we are offering extra support.

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This report aims to evidence the inequalities in perinatal care that we have observed (Amma, 2024)

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This report aims to evidence the inequalities in perinatal care that we have observed (Amma, 2024)

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Amma works closely alongside NHS maternity services, as one of the main referrers into our service. We acknowledge there are many individual practitioners working hard to deliver trauma-informed, person-centred care. Although many of the women we spoke to about their experiences of maternity care highlighted issues, they also shared instances of positive feedback, which are included in their testimonies.

Through our collaboration with the NHS Equalities Team and regular liaison with midwives and maternity services management, we are also aware of several strategies for improvement, which are currently ongoing. NHS Greater Glasgow and Clyde's current work to improve birth outcomes and experiences for racialised women and birthing people includes:

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The Cultural Awareness Hub – a national service to help organisations understand, respect and serve all communities.

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The Cultural Awareness Hub – a national service to help organisations understand, respect and serve all communities.

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A number of our trainers host taster sessions. +44(0)1284 758300

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EELGA is delighted to launch The Cultural Awareness Hub - a national service to help organisations understand, respect and serve all communities.

It brings together experts across numerous fields to provide bespoke training packages to equip professionals with the skills and knowledge to provide personalise care.

Led by Rachel Heathcock, The Cultural Awareness Hub is available for organisations working with and supporting the public across the country.

Training offered includes:

To find out more about the services available, visit The Cultural Awareness Hub.

A number of our trainers are hosting taster sessions in the coming weeks, please see below for more information:

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Cultural awareness training hub launched by East of England LGA

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The East of England LGA has launched The Cultural Awareness Hub to provide bespoke training to organisations across the country.

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No one should have to hear a broken version of their name

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No one should have to hear a broken version of their name

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Record yours for free and add to your email signature (if you believe your name is 'well known' and 'easy to pronounce', check your privilege)

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NameDrop - Your Personal Voice Signature

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No name should ever be mispronounced. NameDrop allows you to record your name and share it with the world

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Why are Black mothers in the UK five times more likely to die during childbirth than their white counterparts?

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Why are Black mothers five times more likely to die during childbirth? | Sonah Paton | TEDxBristol

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What to say when someone says something racist

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What to say when someone says something racist

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Micro-interventions are interpersonal tools that are intended to counteract, change or stop microaggressions by subtly or overtly confronting and educating the perpetrator

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Support for Refugee and Asylum seeking mums

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Support for Refugee and Asylum seeking mums

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From the mums that have been there from the start, to those who have just arrived, we protect each other through shared knowledge, friendship, and understanding.

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At the Happy Baby Community, we want to make sure we protect and empower each other, through shared knowledge and understanding. We meet to learn from one another and to feel strong and supported - able to work, study, volunteer, and help others in need.

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The Black, African and Asian Therapy Network

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The Black, African and Asian Therapy Network

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Home of the largest community of Counsellors and Psychotherapists of Black, African, Asian and Caribbean Heritage in the UK

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Celebrating Diverse Practice: Spirit, Mind and Body

Tickets are now available.

KEYNOTE SPEAKERS
Angel Abitha Chi - knowing who we are on a spirit and soul level

Amal Wartalska - socially inflicted trauma and Eye Movement Desensitisation and Reprocessing (EMDR)

Stephen Abdullah Maynard and Sabnum Dharamsi - classical and contemporary perspectives on the Self in Islamic Counselling

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The Black, African and Asian Therapy Network

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Celebrating Diverse Practice: Spirit, Mind and Body Tickets are now available.

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HCRG (Health Visiting service) EDI policy

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HCRG (Health Visiting service) EDI policy

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Divided: Racism, medicine and why we need to decolonise healthcare 

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Divided: Racism, medicine and why we need to decolonise healthcare 

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Annabel Sowemimo (Author) Format: Kindle Edition

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Divided: Racism, Medicine and Why We Need to Decolonise Healthcare

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Divided: Racism, Medicine and Why We Need to Decolonise Healthcare eBook : Sowemimo, Annabel: Amazon.co.uk: Books

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The fight to save Black mothers’ lives (TEDx talk, 12 minutes)

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The fight to save Black mothers’ lives (TEDx talk, 12 minutes)

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Tinuke and Clotilde are pioneering advocates for Black maternal health and well-being in the UK. They co-founded Five X More CIC, an organisation that campaigns for improved health outcomes for Black mothers

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The fight to save Black mothers’ lives | Tinuke Awe & Clotilde Abe | TEDxLondon

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Report from March 2025

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Do I have to pay for maternity care if I was born outside UK?

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Do I have to pay for maternity care if I was born outside UK?

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NHS Maternity Care and Charging - Maternity Action

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challenging inequality : promoting wellbeing

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Inclusive training within practice for healthcare learners and international staff

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Inclusive training within practice for healthcare learners and international staff

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These resources address the root cause of racism and discrimination with the aim of improving the experiences and outcomes of Black, Asian and Minority Ethnic learners and internationally educated staff in healthcare.

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Let us know if this is OK. We'll use a cookie to save your choice. You can read more about our cookies before you choose.

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Skip to main content We've put some small files called cookies on your device to make our site work. We'd also like to use analytics cookies. These send anonymous information about how our site is used to a service called Google Analytics & Hotjar Analytics. We use this information to improve our site.

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Ten Steps to Spot Jaundice in Black and Brown Babies

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Ten Steps to Spot Jaundice in Black and Brown Babies

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A parents' guide to recognising Jaundice in Black and Brown babies

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A parents' guide to recognising Jaundice in Black and Brown babies

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Why concerns about racism are not heard...or acted on (brap, 2024)

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Why concerns about racism are not heard...or acted on (brap, 2024)

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Spectrum Lactation - Diverse image bank of the lactating breast

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Spectrum Lactation - Diverse image bank of the lactating breast

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Breastfeeding support should be available equally to people of all skin colours. This means that professionals, breastfeeding supporters and families should have access to images of lactating breast conditions in people of all skin colours.

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Our goal is to develop and maintain an open access image bank of normality, pathology and anatomical variations in the lactating breast/chest across a range of skin colours. We are particularly focusing on people with black and brown skin as they are under-represented in Western medical and lactation educational resources.

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Coproduction is Equal Partnership, giving people equal voice.

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Coproduction is Equal Partnership, giving people equal voice.

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Step-by-step suggestions to support meaningful partnership, equity, and transformation within NHS services.

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Staff need support and training to do co-production well.

We suggest a rough approach for work in co-production, particularly when working beyond the individual patient-clinician relationship. We recognise the pressures we are all under in the NHS and so these suggestions are not intended to be prescriptive. Crucially people should be prioritised over process.

1. Language matters

"It can be really demotivating when co-production facilitators* overly use acronyms or academic language when trying to co-produce with PPI groups. Often, you feel silly or embarrassed to give your views in case you have misunderstood what the facilitator is asking. The best facilitators really know how to relate to their audience and get the best collaboration from the public." - Shabir Aziz

"Co-production facilitators need to use language that everyone can understand, especially those who may not have a university education. I often felt that I didn't understand what the facilitator was saying, but didn't want to ask because I thought I was the problem." - Tasleem Aziz

*We had a long discussion about what best to call those who do co-production. We settled on 'co-production facilitator' or just simply 'facilitator', but appreciate that this is not a perfect descriptor.

2. Plan well, co-produce well

Considerations:

Begin thinking about co-production as early as possible

"It's hard to make a positive contribution when you don't really understand what's going on in the research project - this becomes even more difficult when the project lead is reaching towards the end of the project and our input seems tokenistic rather than collaborative." - Shabir Aziz

"Sometimes, it feels more like ticking boxes than really trying to co-produce. This is because at that stage a lot of the work has already been done." - Tasleem Aziz

Map out who is involved and impacted by the work you are planning

Potential impact across the communities you serve, e.g. demographic groups or inclusion health groups

Balancing staff and patients that contribute: a larger group can mean more perspectives are heard, if everyone is able to speak, but can make it harder to build trust and relationships

" Co-production facilitators really need to be more creative when co-producing with larger groups, where it is difficult to engage with everyone. I remember the feeling of being quite frustrated and disappointed in that kind of groups and have thought - there was really no point in coming. In larger groups, it's essential to break down the group and provide feedback. " - Shabir Aziz

"I find it harder to concentrate and focus in larger groups. You simply don't get enough time to think about questions and give opinions. When I do think of something, the group has usually moved on. Tasleem Aziz

Drawing on existing networks can give work a head start as relationships are already established, but risks missing diverse and new voices.

"There have been times when our PPI group has been quite resistant to new members - whilst having the same group enables us to gel better, having new voices would perhaps gives us a better range of opinions and views." - Shabir Aziz

"Whilst I prefer small groups as they are more comfortable and familiar with each other, having the same people means hearing the same opinions. This is not always healthy." - Tasleem Aziz

Anticipate sensitivities:

Plan for support if a project may trigger sensitive or painful memories

Be aware of cultural sensitivities

"During a research session on prostate cancer, some of the men from black and Asian groups were reluctant to speak whilst women were present. Later, the sessions became men only and I noticed a visible difference in the amount and depth of discussion from the participants." - Shabir Aziz

"When discussing sensitive subjects such as contraception or breast cancer, researchers need to be culturally sensitive and allow women to have separate, safe spaces in order to discuss freely." - Tasleem Aziz

3. Align the right resources

Training and skill development: e.g. facilitators/chairs need skills such as active listening, empathetic understanding, acceptance of diversity and understanding of the complexity of privilege and discrimination.

Funding, for example venue hire, expenses and providing involvement payments. It is vital to be aware of potential risks to participants as involvement payments may impact on benefits, see NHS England guidance

Digital inclusion: training, equipment, data, community resources such as libraries (see https://www.goodthingsfoundation.org/)

Translation and interpreting services

Staff and patient time

4. Make sure meetings are enjoyable and meaningful

Outreach: actively reach out to communities and grassroots organisations to build broader participation

Establishing the team:

Agreeing a charter at the beginning may help and being open to amend it throughout the project

Roles and responsibilities

Processes for feedback and evaluation avoiding 'bean counting'

Support and mentorship

Explore different communication needs

Meetings:
Think creatively about how and where you work (sharing food!)

" Eating together, sharing food with people, it makes such a big difference. Something really important happens, to do with trust and connection." - Amy Dehn Lunn

For face-to-face meetings, venues should be accessible - physically (e.g. wheelchair access) and culturally (whose 'patch'?)

If online, be aware of the risks of digital exclusion

Check in at the start and end of meetings

Who is facilitating/leading discussions? Having co-chairs may make it easier to check language

Who is recording what is said, and the decisions? How is this shared back and agreed?

Listen to what community members have to say and take seriously - try not to select only ideas and comments which appeal or are convenient

"More than often, co-production facilitators come to get our opinions and run! There is rarely any summary of what was discussed and we may never see them again. This does not feel like co-production." - Shabir Aziz

"It's really useful when the facilitators come back or send us feedback via email about what was discussed and what they gained from talking to us." - Tasleem Aziz

5. Always reflect and share

Constructive criticism is key: we all make mistakes, we all have bad days, none of us are perfect - we should aim to create a space in which we can all learn and grow.

Sharing power in new ways may feel uncomfortable/challenging - reflect on your power, your privilege, your needs within the group.

" It's really important to be really clear in your own mind and with the group about what is and isn't possible to change. Otherwise it can get frustrating all round - I've definitely been there! It's worth thinking beforehand about how you can feed back those things that need to change that are outside the group's decision-making." - Amy Dehn Lunn

Facilitators and chairs need to reflect on and address the power imbalance between co-production members in order that all have an effective voice

"Sometimes, I feel like facilitators are like 'rabbits in the headlights' when it comes to dealing with continuously vocal members of a co-production group. Out of fear of upsetting the group they will allow the status quo. This has to change if all members are to be equal in collaboration." - Shabir Aziz

"I have had the opportunity to co-chair a PPI meeting where I was able to lay down some ground rules. Although I was worried that this would upset people, I got positive feedback and the meeting proved successful." - Tasleem Aziz

"Being open to different ways of communicating is so important - not every co-production meeting needs a strict agenda that must be followed." - Lucy Johnson

Feedback during the project: what impact are we making? How are we changing things?

"The best kind of co-production has been where the facilitator has come back to us and fed back the impact and value of our collaboration. At those times it feels like you have made a little difference." - Shabir Aziz

Create opportunities to share with the wider communities, both professional and community groups.

Formalise the end of a project. For example, this could be through sharing written and verbal feedback, or a farewell meeting. Make it a celebration!

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How to: A guide to co-production in the NHS - Health Equity Evidence Centre

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This practical and reflective guide explores the meaning, value, and challenges of co-production in healthcare, offering tools and real-world insights for working collaboratively with patients and communities. Rooted in lived experience, it provides honest reflections, key questions, and step-by-step suggestions to support meaningful partnership, equity, and transformation within NHS services.

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Historical drama set in 1920s New York, USA (released 2021)

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Historical drama set in 1920s New York, USA (released 2021)

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The film follows the intertwined life of a black woman and her white-passing childhood friend

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Passing is a 2021 black-and-white romantic drama film written, produced, and directed by Rebecca Hall in her feature directorial debut. It is based on the 1929 novel of the same name by Nella Larsen, and its title refers to African-Americans who had skin color light enough to be perceived as white, referred to as " passing". The film stars Tessa Thompson, Ruth Negga, André Holland, Bill Camp, Gbenga Akinnagbe, Antoinette Crowe-Legacy, and Alexander Skarsgård.

Passing had its world premiere at the 2021 Sundance Film Festival on January 30, 2021, and began a limited theatrical release on October 27, 2021, prior to streaming on Netflix on November 10. The film received acclaim from critics, who praised Hall's screenplay and direction, and performances of Thompson and Negga. The film was named one of the top ten films of 2021 by the African American Film Critics Association. For her performance, Negga was nominated for the Golden Globe Award, BAFTA and Screen Actors Guild Award in the category of Best Supporting Actress.

In 1920s New York City, Irene Redfield, a light-skinned black woman living in Harlem, meets a childhood friend, Clare Bellew, by chance at a hotel dining room. While Irene is married to a Black doctor, the also light-skinned Clare "passes" as white and has married a wealthy white man from Chicago named John.

Clare invites Irene up to her hotel room so they can talk more openly. Clare explains that after her father died, she was raised by her two white aunts and married John very young. They are interrupted by John, who openly despises and degrades Black people, unaware of his wife's or Irene's racial background. Irene leaves the hotel, angry with Clare, and refuses to respond to Clare's letters. However, after Clare unexpectedly shows up at Irene's home and apologizes for the encounter, they rekindle their friendship.

Clare, who wishes to associate with black people again, invites herself to a dance party that Irene is organizing. Most of the guests at the party find Clare charming, including Irene's husband, Brian. While there, Irene reveals Clare's secret to her friend, novel writer Hugh Wentworth, who seems less impressed with Clare than the others.

As time passes, Clare soon becomes involved in all aspects of Irene's life, joining Irene and Brian to all their outings. At first, Irene seems happy to have Clare around, but soon she becomes disillusioned with Clare, and starts to grow dissatisfied with her presence. Brian, also dissatisfied, attempts to teach his and Irene's children about racism in America, as Irene refuses to move anywhere else. However, Irene believes that the children are too young to learn about such things, inciting an argument between the two, further straining their marriage. After Brian invites Clare to a tea party from which Irene purposefully excluded her, Irene begins to suspect that Clare and Brian are having an affair.

When out shopping with her friend Felise, who is unable to pass, Irene encounters John, and hurries away as he begins to realize the truth about his wife's racial background. Irene tries to warn Clare, but decides against it when she is unable to reach her by phone.

As Brian, Irene, and Clare are on their way to Felise's Christmas party on the top floor of a seven story building, Irene asks Clare what she would do if John ever learned the truth. Clare replies that she would move back to Harlem to be with Irene, a response which Irene finds troubling. During the party, Irene remains silent, avoiding the other guests. She opens a large vertical window to smoke. Suddenly, John angrily forces himself into the apartment demanding to see Clare, who remains calm, and moves next to Irene by the window. John accuses her of being a "dirty liar" and lunges towards her, at which point Irene abruptly puts an arm across Clare's pelvis. Clare falls backwards out the window, but it is not made clear whether John pushed her, Irene pushed her, or she committed suicide.

In horror, all the other guests rush outside, not knowing whether or not Clare is dead. After some hesitation, Irene slowly goes downstairs, where the police are questioning guests. Brian states that he believes John pushed Clare, but when asked, Irene asserts that she believes the fall was an accident. The film ends with the police declaring death by misadventure, Irene sobbing in Brian's arms, and Clare's body being carried away by medics.

It was announced in August 2018 that Rebecca Hall would be making her directorial debut on the adaptation of the Nella Larsen novel, with Tessa Thompson and Ruth Negga set to star in the lead roles. Hall had begun writing the film a decade earlier upon reflecting on her own family's history. When Hall presented her with a script version, Negga decided to collaborate in making it into a film as Negga was surprised the work was not more prominent, after having read the novel and was "completely astounded" by it. Thompson stated that the film would be shot in black and white. André Holland was cast in October 2019. In November 2019, Alexander Skarsgård joined the cast of the film.

With less than a month to go before filming production was set to begin, Hall was still $500,000 short on her desired $10 million budget, and had to apply for two grants to cover the difference. Filming began in November 2019 in New York City. The film is in monochrome. Benjamin Lee of The Guardian praised the use of a 4:3 aspect ratio as in this film it was "both fitting and practical given a smaller budget". Into the third week of filming, the Hugh Wentworth role, originally intended for Benedict Cumberbatch, remained uncast, and budgetary realities and the tight filming timeline meant the production would need an actor who lived in New York. On November 21, Bill Camp signed on, and filming wrapped in December after a 23-day shoot.

Passing had its world premiere at the 2021 Sundance Film Festival on January 30, 2021. Shortly after, Netflix acquired distribution rights to the film for around $15 million. It also screened at the New York Film Festival on October 3, 2021. The film had a limited theatrical release on October 27, 2021, prior to streaming on Netflix on November 10.

According to Samba TV, the film was watched in 653,000 households over its first three days of release.

Critical reception

On the review aggregator website Rotten Tomatoes, 90% of 231 critics' reviews are positive, with an average rating of 7.7/10. The website's consensus reads, "While Passing's delicate approach has a dampening effect on its story, debuting director Rebecca Hall makes the most of an impressive cast-and handles thorny themes with impressive dexterity." Metacritic, which uses a weighted average, assigned the film a score of 85 out of 100, based on 46 critics, indicating "universal acclaim".

Kevin Maher of gave the film 4 out of 5 stars, calling it, "a mesmerizing, deeply disquieting experience." Jessica Kiang, writing for , wrote that the film is "unerring, deceptively delicate, quiet and immaculate, like that final fall of snow." In his review for The Guardian, Peter Bradshaw praised Hall's direction, calling the film, "a very stylish piece of work from Hall." Benjamin Lee of The Guardian, gave the film a negative review of 2 out of 5 stars, arguing that it had "disappointing lack of verve" and was "inert".

The performances of Negga and Thompson in particular received praise. In a very positive review for the Chicago Tribune, Michael Phillips gave the film a perfect score of 4 out of 4 stars, and wrote of the performances: "what Thompson and Negga accomplish on screen in this extraordinarily detailed portrait becomes a master class in incremental revelations". David Rooney of The Hollywood Reporter lauded Thompson for her "unshowy, beautifully internalized performance", and Simran Hans called Negga "magnetic" in her review for The Guardian. In Time Magazine's annual best performances of the year list, Stephanie Zacharek named Negga's performance of the best of 2021.

1. ^ Barwick, Clark (2019). "A History of Passing". South Atlantic Review. 82: 24-54 - via Gale Academic OneFile.

2. ^ N'Duka, Amanda (October 22, 2019). "'Moonlight' Actor André Holland Joins 'Passing' Adaptation From Rebecca Hall". Deadline.

3. ^

4. ^ "Passing". Rotten Tomatoes. Fandango Media.

5. ^ "Passing". Metacritic. Red Ventures.

6. ^ Hipes, Patrick (January 9, 2022). "Golden Globes: The Power Of The Dog, West Side Story, Succession Lead Way - Complete Winners List". Deadline Hollywood.

7. ^ Anderson, Erik (December 1, 2021). "'Belfast,' 'The Power of the Dog' lead 26th Satellite Awards nominations". AwardsWatch.

8. ^ ""The Power of the Dog" Leads the 2021 Seattle Film Critics Society Nominations". Seattle Film Critics. January 10, 2022.

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Passing is a 2021 black-and-white romantic drama film written, produced, and directed by Rebecca Hall in her feature directorial debut. It is based on the 1929 novel of the same name by Nella Larsen, and its title refers to African-Americans who had skin color light enough to be perceived as white, referred to as " passing".

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Research is finally becoming more inclusive so that is is relevant to everyone. You are encouraged to sign up and join the studies that interest you.

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Making research inclusive – Be Part of Research

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Dr Esther Mukuka, NIHR Director of Research Inclusion, talks to us about how the NIHR is making research more inclusive.

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'is it because I'm muslim? (Kinan Salaam poet)

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'is it because I'm muslim? (Kinan Salaam poet)

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SpitNights on Instagram: "is it because I'm muslim? 
🎤 @kinansalaam 

the crowd were blown away by this performance last week from Kinan Salaam

📍 @theministry.london
🎥 @tyronelewis22

next shows
🎷 18th sept - poets vs singers
🎷 24th sept - poetry x improv jazz
🎤 2nd oct - pure poetry

#poetry #poem #identity #muslim #diversity #spokenword"

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84K likes, 2,336 comments - spitnights on September 12, 2025: "is it because I'm muslim? 
🎤 @kinansalaam 

the crowd were blown away by this performance last week from Kinan Salaam

📍 @theministry.london
🎥 @tyronelewis22

next shows
🎷 18th sept - poets vs singers
🎷 24th sept - poetry x improv jazz
🎤 2nd oct - pure poetry

#poetry #poem #identity #muslim #diversity #spokenword". 

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Inquiry into racial injustice in maternity care (2022)

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Inquiry into racial injustice in maternity care (2022)

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In May 2022, Birthrights published Systemic Racism, not Broken Bodies (download below), the report on the year-long inquiry into racial injustice in the maternity services.

The inquiry was overseen by an expert panel of obstetricians, midwives, experts by experience, academics, birth workers and lawyers, and over 300 Black, Brown and mixed ethnicity women and birthing people gave evidence and contributed to this ground-breaking report. It allowed us to hear the stories behind the statistics and demonstrated that it is racism, not broken bodies, that is at the root of many inequities in maternity outcomes and experiences.

The evidence gathered uncovered how systemic racism within maternity care - from individual interactions and workforce culture through to curriculums and policies - can have a deep and devastating impact on basic rights in childbirth. The subsequent findings showed that Black, Brown and mixed ethnicity women and birthing people often felt unsafe, were ignored and disbelieved, were subject to racism by caregivers, were not given a proper choice or the means to give true informed consent, and were subject to coercion from caregivers, were regularly dehumanised and were disproportionately affected by structural barriers to care.

To address this and to attempt to close the persistent gap in maternal mortality and morbidity in this country, Birthrights is calling for urgent and immediate action from all parts of the maternity system, including the implementation of our Universal Recommendations including:

Commit to being anti-racist

Decolonise maternity curriculums and guidance

Make Black and Brown women the decision makers in their care and in the wider maternity system

Create safe, inclusive workforce cultures

Dismantle structural barriers to racial equity through national policy change

We would like to thank Amy Gibbs and Melissa Brown for all their dedication and hard work in producing this report.

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Inquiry into racial injustice in maternity care - Birthrights

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Birthrights, UK charity for human rights in pregnancy and childbirth, releases Systemic Racism, Not Broken Bodies, after year-long inquiry.

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7 Anti-racism principles (Nov 2024)

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Trauma-Informed Care in Black, Asian and Ethnic Minority Communities

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Trauma-Informed Care in Black, Asian and Ethnic Minority Communities

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For further information please contact Sam Rodger (Assistant Director of Policy and Strategy) at info@nhsrho.org

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Trauma informed care has been increasingly explored within services over recent years both in health and social care, as well as criminal justice.

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Contact: Rachel Burley at Brightstart Children's Centres for further information about the drop-in group.

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Connecting Families and Children’s Centre Services Request for Support

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This form is to request support for a family in Bath and North East Somerset.

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Contact: BrightStartCC@bathnes.gov.uk for further information

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Social, emotional and practical support to build confidence, prevent isolation and combat the stigma attached to being a single parent in the South Asian community.

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The Network for South Asian single parents in the UK Become part of a network which will provide you with social, emotional and practical support to build confidence, prevent isolation and combat the stigma attached Read more...