Our research with integrated care boards and recommended actions

Integrated Care Boards (ICBs) have an important role in collaborating with local bodies to tackle health inequalities, including in maternity and neonatal care. We carried out research to understand what ICBs are doing to address race disparities in maternity. We used our findings to develop recommended actions to share this learning and support the work of ICBs.

Our work highlights how the Public Sector Equality Duty (PSED) can improve mothers’ and their babies’ access and experiences when using services, as well as their health outcomes.

Our findings and recommended actions will be useful for ICBs and health bodies, such as:

• maternity and neonatal services
• GP practices
• healthwatch bodies
• regulators

The aim of our research was to understand what ICBs are doing to address maternity inequalities and to share this learning, supporting the work of ICBs to improve patient care and safety. We are grateful to all the ICBs who shared their valuable insights. This briefing builds on our policy briefing on using equality data in maternity and neonatal care.

We identified ICBs based on our previous PSED compliance monitoring work and our engagement with national health bodies. From this exercise, we identified a range of relevant practices. We analysed information from the websites of 14 ICBs and carried out nine in-depth interviews. We asked about: 

• the types of equality information they were collecting and analysing, including through engagement with service users
• how they were using equality information to improve service design or delivery

These recommended actions are based on our findings and aim to help ICBs further tackle inequalities in maternity and antenatal care.

The ICBs we analysed had collected a range of equality data relevant to maternity. This is important for anticipating risks and identifying more vulnerable groups. It also aligns with the commitment to ‘understand your population’, which is within the NHS’s pledges to improve equity for mothers and babies and race equality for staff.

ICBs had collected data about the protected characteristic of race for potential service users in their local population. Under the Equality Act 2010, race can mean someone’s colour, ethnic or national origins or nationality (including citizenship).

Overall, the ICBs we interviewed reported making good progress in collecting ethnicity data about their service users and employees. Some said that, as well as collecting various information about people with Black, Asian and Mixed ethnicities, they had tried to collect more detailed information about those with White backgrounds, such as Gypsy, Roma or Irish Travellers.

Using different data sources

The ICBs reported using a range of data sources, such as information provided by patients and staff, patient records, complaints, maternal medicine networks or patient safety incidents. Various ICBs said that to improve maternal health, they needed to consider data on wider metrics like obesity, diabetes, smoking, deprivation and pre-conception health. One ICB said that external bodies might be cautious about sharing information due to concerns about data protection, particularly for sensitive categories of data. Some ICBs talked about using dashboards, such as NHS Digital’s Maternity Services dashboard, which are based on the following national indicators:

• mortality and morbidity
• choice and midwifery continuity of carer
• clinical care and health promotion
• organisational culture
• user experience

Using a data dashboard can help local maternity systems track, benchmark and improve the quality of their services. 

A range of ICBs noted the value of using other sources to fill quantitative data gaps or improve data quality. This can include qualitative sources, such as midwife expertise or engagement with service users. One ICB was keen to collaborate with their combined authority to access regional data and another liaises with national bodies about data. A range of ICBs were implementing pilot projects to better understand specific issues, including one involved in research on close relative couples.

Recommended action: publish data that supports your work

Consider what data you need to publish to support your work on maternity equality and meet your PSED specific duties. The data may include:

• national data about maternity and neonatal disparities (referred to as ‘maternity’ going forward)
• information about the make-up of your population or specific wards
• data on the ethnicity of local women (potential service users)
• local languages spoken
• health metrics such as diabetes or obesity rates
• how mothers access and experience care, as well as their health outcomes
• outcomes for babies from different ethnic groups, for example, pre-term births, birth weight or child mortality

Information about the use of interpreters, service satisfaction, complaints or referrals to Patient Advice and Liaison Services (PALs) may also be relevant. Your equality information should also be used to set your PSED equality objectives.

Improving data quality

ICBs acknowledged that the consistency of their equality data was varied. For example, one had good data about Asian communities but less about Black communities.

This is consistent with research on ethnic disparities in maternal mortality by the National Perinatal Epidemiology Unit (NPEU) which found different descriptions of ethnicity in the health records of ethnic minority women, including one individual who was variously recorded as Caribbean, from Sierra Leone and from Jamaica. Ethnic coding data completeness for maternity services has improved year on year since 2019. NHS Resolution’s Maternity Incentive Scheme has been influential as it gives trusts financial incentives for achieving various safety actions, including data completeness for ethnicity records. More than one ICB said that work pressures on staff may have contributed to data gaps, if staff prioritise other tasks. Some said that the introduction of new ICT systems had made data recording more difficult, but this had improved over time.   

Ensuring that employees or service users provide information about their own protected characteristics can improve data quality. NHS Digital has underlined this in their guidance on collecting data about ethnicity. Individuals are not obligated to provide this information, so health bodies should encourage and support them to do so and provide regular feedback about how the data is used and the impact of interventions.

When asked about how data completion rates can be improved:

• one ICB observed that individuals are more likely to submit data if they trust an organisation
• one ICB suggested that staff in more diverse areas may better understand why equality data is collected
• more than one ICB highlighted the value of working with staff and service users to explain the importance of using equality data to improve patient care and safety

Training can help staff feel more confident answering questions from service users and the NHS has published guidance on collecting data about protected characteristics to help with this. ICBs reported that data can be held by different providers (such as mental health services), potentially affecting data quality. ICBs therefore need staff with the skills to collate and analyse this information. 

The ICBs reported a range of potential steps to fill data gaps:

• one suggestion was for ethnicity to be included as a mandatory field on ICT systems, so it can’t be left blank
• one ICB had used hand-held tablets in reception areas to make it easier for people to provide ethnicity data
• one ICB said they are mindful of pressures on front-line staff, so they had provided on-going support to facilitate data collection
• various ICBs have digital midwifes (experienced midwifes with knowledge of ICT systems in maternity care), who can support data collection and analysis, and it was noted that their knowledge of clinical systems is particularly useful

Recommended action: increase awareness and provide feedback 

Consider how you can increase awareness amongst staff and service users about why equality information is collected. It may be useful to explain that it can be used to improve access and experience of maternity services, increase patient safety and promote equality. 

Consider how you can provide regular feedback to tell staff and service users how the data has informed interventions, as well as their impact. NHS Digital has published information about health and care information (read the understanding patient data explainer page), which may be helpful.

Consider what training or learning resources should be provided to help staff feel confident answering questions from service users or effectively handle equality data.

Recommended action: improve your data accuracy

To improve data accuracy, you can:

• gather ethnicity or language data from service users
• work with analysts or digital midwives to organise your data sources
• collaborate with other organisations to fill data gaps

Engaging with service users

Gathering information through engagement can help ICBs understand the needs of people from different races as well as meet the PSED. Our 10-step guide on considering equality in policy making includes tips on how to validate your equality considerations, including how stakeholder engagement can save you time and effort when developing policies.

All the ICBs we interviewed highlighted the importance of engaging with service users when tackling maternity disparities. They reported that engagement can help them with a range of goals, including:

• understanding women’s experiences
• responding to service user feedback
• co-creating interventions to improve service access and experiences
• shaping their equality work
• reviewing the equality impact of their interventions
• identifying gaps in support systems

ICBs observed that engagement had improved trust and communication with women from ethnic minority communities and enabled them to promote health messages. The CQC has produced a framework on using engagement to tackle health inequalities.  

Engaging with partnerships and communities

Engagement had often been done in collaboration with other bodies, like Maternity and Neonatal Voices Partnerships (MNVPs), voluntary bodies, race equality councils or Healthwatch groups. Many ICBs said partnerships had made engagement more effective and the NHS has published relevant guidance on working in partnership with people and communities.

The ICBs mentioned engaging with groups linked to refugees or asylum seekers, people from other White groups (for example, Gypsy or Traveller groups or Polish communities) and those with complex social needs, such as prisoners. One ICB said that drama workshops had given migrant women a way to share their experiences and one noted that it had been effective to work with a local volunteer bank. In one ICB area, an independent review of maternity services had developed valuable links with women from different ethnic backgrounds.

Engagement had taken place in different locations, including drop-in centres, community spaces and religious venues. The ICBs had been initiating new engagement as well as building on existing work (for example, work being done for the NHS equality delivery system). One ICB said useful information had been gathered from service users through MNVP surveys. ‘Listening events’ were cited as a useful place for clinicians to listen to women and share information about outcomes for different groups (for example, local child mortality rates). 

All of the ICBs reported on engagement by MNVPs, such as sharing information about maternity, mental health or other services. It was reported that NHS England guidance for MNVPs had been helpful. Many MNVPs had started with a focus on maternity and extended their role to neonatal care. One ICB reported that an MNVP had created a separate workstream to engage on neonatal issues, in response to service user feedback. ICBs advised that MNVP staff have wide-ranging remits and face resource constraints, so they need to carefully prioritise and collaborate with other bodies.

A range of ICBs observed that their MNVPs were not fully representative of the local population. One ICB recommended that ICBs undertake mapping to identify where different groups live locally, for use in engagement and to promote more diverse MNVP leadership and membership. 

Recommended action: collaborate with other organisations

Consider how you can work in partnership with existing networks during your engagement. Going to groups or venues that women already attend can be effective for reaching different groups and diversifying the membership of your Maternity and Neonatal Voice Partnership (MNVP). It can be useful to engage with women about pre-conception health. Co-production or collaboration on developing interventions can bring benefits to providers and service users.

Analysing equality data

Analysing equality information can help ICBs:

• understand the needs of different groups
• consider the equality impact of their existing and proposed policies
• consider what equality information to publish and set their equality objectives

The PSED is an ongoing duty, so ICBs need to periodically monitor the actual impact of their policies and share new information with decision makers. Our briefing on data in maternity and neonatal care advises on how data analysis can help organisations understand the impact of their policies, design effective services, meet the PSED and deliver greater value when tackling inequalities.

The ICBs reported analysing a range of information, such as risk factors for different groups of women or data on which groups are more likely to book in early for antenatal care. One ICB observed that, as well as assessing specific policies, it is important to examine the patient journey for different groups of women so that consideration can be given to interventions that would make maternity care more equitable.

Using data to improve service planning

Using disaggregated equality information can help ICBs design, deliver or commission services in a way that improves access, experiences and outcomes for mothers and their babies. This includes those from ethnic minority backgrounds. The data can help ICBs to meaningfully measure and report on progress.

ICBs had used equality data in various ways, to design and deliver their services to better meet the needs of women from different groups. For example:

• using data about take up of maternal mental health services by different groups to inform service planning decisions
• participating in national research about pre-conception health and ethnicity and using it to design services to meet the needs of different groups
• identifying gaps in local support systems and funding a community project to enable Black women to better access healthcare services, including mental health, contraception and pelvic health
• establishing an anti-racism hub in a hospital, combining clinical and equality expertise to assess policies and practices for service users and employees
• working with medical schools to examine curriculums, including what is taught about identifying and meeting the needs of women from different races

Using data to improve babies' outcomes

The ICBs reported a range of work to improve outcomes for babies. One ICB highlighted the importance of working with women whose babies are likely to need neonatal care, to better prepare them. Examples of actions included:

• establishing services for close relative couples, such as employing a specialist midwife to advise about genetic issues
• collaborating with a maternal medicine network and using the data to inform their work, such as advice to groups most likely to have lower-weight babies
• analysing data about local child mortality rates and sharing findings with local women through engagement, with the aim of improving maternal health   
• analysing data about ethnicity and still births (for which diabetes is a contributor) and using this to shape health messages for groups with higher rates of diabetes
• undertaking engagement with women about pregnancy loss and bereavement, including cultural aspects of loss

Using data to improve maternal health

The ICBs talked about various work to promote better maternal health. Examples included:  

• midwives gathering data about sickle cell disease and using it to roll out screening
• providing a mechanism for online registration of pregnancies which can be convenient for service users, enabling them to connect with antenatal services and receive timely information from their GP practice about the value of taking folic acid
• sharing information at children’s centres, for women who have further pregnancies
• providing health information in a retail setting, which was convenient for local women 

ICBs highlighted the importance of pre-conception engagement, to support maternal health and encourage timely access to services.

Recommended action: evaluate your patients’ experience to improve services

Consider what you can do to improve your services based on the equality information you collect. Evaluate the overall patient journey through maternity care, to understand if the needs of different groups are being met. This may help you identify gaps in access or concerns about a service which you can respond to. This briefing provides many examples of how ICBs are doing this, which might be useful for your ICB area.

Recommended action: use data to assess impact of interventions 

Break down data into smaller groups to make sure you’re learning about the specific needs or mothers and babies. This helps measure and report on progress in a meaningful way.

Consider how to use your data, including from engagement, to understand how your planned interventions may affect different groups. The PSED is an ongoing duty, so you need to periodically monitor the actual equality impact of your interventions. Our 10-step guide on considering equality in policy making provides guidance on this.

Meeting the needs of individuals

‘Continuity of carer’ is a common objective for ICBs but staff shortages have made this difficult, as reported in a House of Commons Committee report on Black maternal health. Many ICBs underlined the importance of personalised care in maternity services, which can help clinicians better understand women’s priorities during pregnancy, birth and the post-natal period. Template plans have been developed by ICBs (online and on paper) and one ICB had co-produced theirs with ethnic minority women. It was noted that staff need training to successfully roll out this approach. For example, midwives may need to facilitate discussions if women’s preferences differ from clinicians’ usual approaches (for example, on inductions). It was reported that staffing levels will affect the success of personalised care. 

Understanding and meeting language needs

Access to interpretation and translation is important for patient care and safety, and for meeting the PSED. The NHS has published guidance on language interpreting and translation. It is particularly important in maternity care as census analysis for 2023 showed that 31.8% of all live births in England and Wales were to mothers who were not born in the UK.

ICBs reported that electronic patient records had made it easier to identify language needs. One ICB plans to have all patient information in one place, including notes, any personalised care plan and language needs. One advised that language issues were not always straightforward. For example, people may be fluent but unable to write in a language, or languages may not have a standard written form. 

Providing information in various languages is an important way to communicate with service users from different races. One ICB observed that digital information can be more easily translated, but paper versions may still be important for others, particularly if they are digitally excluded. Other examples included: 

• producing personalised care plans in Easy Read and various languages
• developing a platform hosting pregnancy information in many languages
• introducing ‘rapid communication cards’ for hospital triage, with images so women can quickly communicate issues, such as reporting pain, bleeding or their baby not moving

A number of ICBs said that their interpretation services needed improvement, while others were happy with their current provision. Other observations included:

• reporting that in-person interpreters are usually available for routine appointments but more difficult for births, which are harder to predict
• trialling new approaches to interpretation, such as video services (one ICB already offers video interpretation in over 30 languages and audio for over 200 languages)
• developing a standard operating procedure for translation and interpretation to provide clarification for clinical and other staff, which underlines that it is not appropriate for family members to interpret for patients 

A number of ICBs noted the importance of promoting awareness of interpretation services. One said that women need to be told that services are free, to prevent any concerns about costs. One ICB said longer appointments were necessary when interpreters are used and another said it is important to collect data about demand for interpreters, to support better commissioning.

Providing services in other languages

A number of ICBs were holding information sessions in different languages, including antenatal classes (including some by bilingual midwives). These were based on data about the main languages spoken locally, with people from outside the area keen to attend. Sessions covered a range of issues, such as pregnancy, labour and the post-natal period and local interpretation services. Other examples included:

• discussing cultural expectations of birth and parenting in antenatal classes
• underlining that, even if a small proportion of women need to access such classes, they are important as those groups are more at risk of having adverse outcomes
• establishing pregnancy circles to promote peer support amongst specific groups 

Various ICBs also had specialist roles to provide support to pregnant women in different languages. They can help women navigate health services or get advice, such as on mental health, blood pressure, diabetes or inductions. One ICB had an ‘independent maternity advocate’ for complex cases.

Improving representation and cultural competency

When asked about diversity in the workforce:

• more than one said their workforce was not reflective of the local population, which can affect relationships with service users
• one in a major city said this had not been their experience
• one noted that staff in their neonatal intensive care unit were not very diverse
• one said that their workforce diversity was improving, but not to the same extent at more senior grades

Many ICBs reported running training in cultural competency. This provides opportunities for staff (including those recruited internationally) to examine stereotypes or assumptions, such as about pain tolerance for different races. It can help staff be more confident having culturally sensitive conversations with patients about pregnancy or birth. It was noted that, if training isn’t mandatory, participation may be affected. It was also highlighted that new skills take time to embed.

ICBs can also improve services by providing more appropriate clinical care. One reported providing training and creating resources for midwives about identifying conditions (for example, jaundice) in babies with darker skin, or finding veins in women with darker skin.

Recommended action: provide effective language support

Consider what you can do to better identify and meet the language needs of service users. This may include facilitating timely access to high-quality interpretation services and publishing information about pregnancy, birth, post-natal or maternal health in different languages. It might be beneficial to run information sessions in different languages for pregnant women and new parents. Think about promoting peer support for certain groups or employing staff to provide support in different languages. 

Recommended action: promote cultural competency

Consider what you can do to promote cultural competency in healthcare and maternity services. This means delivering effective services to individuals from diverse cultural backgrounds. This includes taking steps to embed this approach among clinical and other staff, at all seniority levels in maternity and neonatal care. When staff have a better understanding of the needs and barriers women from different groups face, they can provide more culturally sensitive services and safer, more effective clinical care. 

Increasing awareness and access to services

Many ICBs had taken steps to increase awareness about services among under-represented groups, for example, by:  

• creating a ‘community connectors’ role to share information with refugees, helping them to understand the health system in the UK
• contributing information about NHS services to be shared in English classes, to help speakers of other languages navigate health services more easily. 

ICBs reported a range of work to improve access to services for all service users, but particularly Black, Asian and migrant women. For example, they reported work to improve access by: 

• creating a core team for higher risk or more vulnerable patients (such as those who have experienced stillbirths), so individuals don’t need to retell their stories, share personal information or build relationships with clinicians each time
• training ‘maternity mates’ to provide support to pregnant women, such as attending appointments or births, which can be particularly valuable for migrant women if they don’t have local support
• providing an advice line for pregnant women, staffed by midwives 24 hours a day, which helps women decide whether to seek urgent medical care and takes pressure off hospital triage services
• using a single point of access for registering pregnancies online, which, along with outreach work by link workers, had increased early bookings

Promoting access to early care

Access to early care is important for the health outcomes of everyone. Antenatal care plays a central role for improving outcomes for women and their babies. Midwives can check on the mother and baby’s health, including the mother’s mental health, and check for any pregnancy-related conditions (such as pre-eclampsia or gestational diabetes). ICBs reported various actions to facilitate earlier access to care. This included work from other specialities, like public health, where lessons can be applied in maternity. For example, actions included: 

• understanding that cultural issues can influence when women book in for antenatal care, responding to concerns and providing advice about the benefits for their babies
• collaborating with a local hospital to identify barriers to early cancer care. It was identified that timely GP appointments were crucial and recommended that race equality training for office and clinical staff in GP practices could help them better understand the barriers faced by different groups
• analysing vaccine take-up rates for different ethnic groups. It was identified that attendance was lower on certain days due to religious observances, so appointments were scheduled on other days, increasing take up

These approaches relate to general healthcare, but can also be used to promote access to and improve maternity services.

Producing information resources

ICBs reported producing a variety of resources about pregnancy. This can help women learn what to expect and when to seek advice. Several ICBs are running education sessions or producing resources about pregnant women’s rights, including for ethnic minority women. Other examples included: 

• a booklet about the journey through maternity care, including a range of health messages, available in digital and hard copy
• leaflets about post-natal care, for which they gained positive feedback – they would like to translate these into other languages
• pocket guides for midwives, highlighting potential risk factors for different groups and supporting culturally sensitive conversations with women

Producing online information

As well as the pregnancy pages on the NHS website, numerous ICBs have provided online information about maternal health and services, such as apps with pregnancy information or resources about becoming a parent. It was underlined that digital exclusion can be a barrier for some. For example, although most people have phones, data costs can be prohibitive. Many do not have laptops and others have limited ICT skills. Tackling digital exclusion is a priority for ICBs, in line with NHS guidance on equity and equality for local maternity systems. In one ICB, maternity services had partnered with digital inclusion charities to provide free phone data to enable service users to access online information.

Recommended action: make information available to all service users

Consider the barriers people might face in accessing digital information resources and make sure that your information is also available via non-digital routes. 

Promoting organisational change

A range of work was being done to promote organisational change, including a focus on building better teams and examining how hierarchies can undermine communication and patient safety. One ICB area had developed a coaching scheme for senior staff to explore race inequalities within institutions. Safe spaces had been created to help staff feel more confident to report racist incidents.

Various ICBs said that targets can be helpful to drive measurable change, such as increasing the proportion of ethnic minority women accessing maternal mental health services or taking folic acid. One ICB said it had been helpful to use short-term metrics (for example, increasing early bookings for antenatal care) as well as long-term measures (for example, reducing obesity to improve maternal health), when planning and reporting on their work. It was reported that it can be useful to build a story around data for decision-makers to emphasise the real impacts on people’s lives.

A number of ICBs underlined the need for ongoing and senior scrutiny of their work in maternity care, and it was noted that using data to initiate discussions with leaders can be an effective way to put equality at the heart of governance in health bodies. One ICB said that staff continuity and establishing good working relationships across the ICB supported their equality work, and that it had been valuable to have clinical staff, including senior midwives, working in a strategic, policy role across the ICB.

Finally, it was reported that work on equality in maternity needs to be co-ordinated with wider health and public health plans. 

Recommended action: strengthen organisational relationships

Consider what you can do to support positive working relationships, both within and beyond your organisation.