Recommendations for improving perinatal health inequalities: A Darzi journey

Women and birthing people from Black, Asian, or mixed ethnic backgrounds are significantly more likely to experience poor outcomes during their maternity journey.

Between September 2021 and October 2022, Darzi Fellow Rosie Murphy undertook work in Croydon to explore these inequalities and what might be done to improve local services.

This is the second in a series of blogs reflecting on the learnings and experiences from her Fellowship. Read Rosie's first blog focusing on partnering with minoritised women and birthing people and third blog focusing on the challenges of tackling structural issues during fixed-term projects.

Croydon is an ethnically and socially diverse London borough. Approximately 52 per cent of Croydon residents are from minority ethnic backgrounds and this is representative of the maternity population. As such, it felt a particularly appropriate location to spend time understanding why significant perinatal health inequalities related to ethnicity still exist.

Over the course of my time as a Darzi Fellow, I spoke with maternity service-users, staff and other stakeholders from across Croydon about the underlying causes of these health inequalities; you can read about some of methods used to involve people and communities in the project here.

This blog details five recommendations which I hope will support ongoing work in Croydon, but which may also be relevant to other maternity services or health and care services looking to tackle health inequalities.

1. Acknowledge the role of systemic racism in upholding perinatal inequity and make organisational commitments towards becoming anti-racist

This subject was raised during one of the earliest conversations I had with a voluntary sector colleague. At the time, she was also working on a project with a neighbouring mental health trust who had made an organisation-wide commitment to become anti-racist. She felt strongly that this was the minimum standard to build trust and engage with the NHS on projects such as this. During my fellowship there has been a catalogue of publications supporting this recommendation including the Black Maternity Experiences survey, the Birth rights Inquiry into Racial Injustice, the Race and Health Observatory (RHO) report on Ethnic Inequalities in Healthcare and the recent Invisible report from the Muslim Women’s Network.

Of course, it is vital that an organisational commitment to strive towards anti-racism is backed up with a suitable action plan that identifies how this will be achieved - without which, it can serve as a fig leaf to hide inaction.  

2. Work collaboratively to find solutions and invest in social capital

Both health and health inequalities are created in the community. The solution to tackling perinatal health inequalities is unlikely to lie within the four walls of a hospital, even if that is where the inequality is being played out. It is therefore crucial that the NHS knows how to work collaboratively with its communities to co-design strategies to tackle perinatal inequalities.

One of the messages that came across strongly from the conversations at the Whose Shoes event was the need for stronger networks to support birthing people and their families; an investment in local “social capital” for pregnancy and early years.

The HEARD campaign is currently working on developing a local maternity programme to meet this need. Ideas included developing maternity peer support, training hairdressers to have conversations about the importance of early referral to maternity services to increase community knowledge levels and a Maternity Champions programme.

3. Invest in effective data capture at a local level

Capturing accurate data around ethnicity in the NHS can be problematic and unreliable. Although there is enough data at a national level to identify the scale of the issue, we don’t consistently have effective data capture at a smaller scale to evaluate of the impact of local initiatives. Without baseline data, assessing the impact of any programmes is difficult because realistic targets cannot be set and funding for projects is jeopardised.

However, some localities have developed effective workarounds. For example, in maternity care, when the childbearing parent is booked in at hospital, a family origin questionnaire is completed to facilitate screening for sickle cell disease or thalassaemia. This could be used to also aid a conversation around the importance of accurate ethnicity data for population health monitoring and as such, upskilling midwives to carry this out could be effective.

Finally, it is important that data capture also considers inequality through an intersectional lens. There is a clear need to improve data capture around other protected characteristics and exclusion health factors in conjunction with ethnicity such as sexuality, religion and deprivation decile or housing insecurity.

4. Listen, hear and take action

The theme of not listening to women has been written large throughout the course of my Darzi Fellowship. Accounts of women not having their concerns listened to, or not taken seriously are an omnipresent feature of sequential maternity reports. When women express choices that go against guidelines or medical advice they are often not supported adequately. Action must be taken to better equip maternity staff to have conversations around informed decision making and personalised care.

Even in circumstances where maternity staff are supportive of women’s bodily autonomy, processes to support fully personalised informed decision-making during labour are not well established. Widespread uptake of new approaches, such as the iDecide tool, are likely to improve the safety, personalisation and experience of labour care.

5. Invest in staff

There remains a widespread misunderstanding about what racism is and how it plays out in health settings, so enabling staff to identify this and supporting them to examine their own bias is so important. Locally delivered cultural awareness training would further support increased safety of personalised maternity care.

A second training recommendation would be to support maternity staff to develop an enhanced understanding and awareness of the role of maternity services in addressing social determinants of health. In maternity services, the perception persists that health interventions such as smoking cessation, weight management and glycaemic control are only required for the duration of the pregnancy. A more long-term view is required to maximise the long term health impact and mitigate against the disparate incidence of chronic disease. Consideration should be given from a commissioning perspective to other opportunities for staff to deliver public health interventions during pregnancy aligned with the prevention agenda. For example, this could be through improving family health and mental health literacy among specific populations.

For any of these recommendations to be implemented, there is also a requirement to invest in a full-time member of staff with a responsibility focused on health inequalities related to ethnicity. Their role would include engaging with the local community and developing the social capital initiatives, embedding cultural shifts, and ensuring that choice and personalisation are protected in maternity care. They would also be there to deliver training as appropriate, set up mechanisms for routine collections of maternity experience feedback and oversee the implementation of new and improved data capture as described earlier in this blog.

With enormous thanks to Ranee Thakar, Gina Short, Olamide Odusanwo, Manjit Roseghini, Donnarie Goldson, Mobola Jaiyesimi, Antoinette Johnson, Leila Howe, Gemma Dakin, Alison White, Jay Patel, Ima Miah, Felisha Dussard, Andrew Brown, Tai Lamard, Gill Phillips, Paul Macey and all the birthing families of Croydon who were so generous in sharing their experiences with me.

Find out more about the maternity and neonatal work happening in South West London ICS.

Find out more

Read more about health inequalities in England in the Marmot Review. Originally published in 2010, many of its findings and suggestions are now more relevant than ever for healthcare professionals to understand.

Read the Marmot Review

Partnering with minoritised women and birthing people to improve maternal and perinatal outcomes: a Darzi journey

Women and birthing people from black, Asian, or mixed ethnic backgrounds are significantly more likely to experience poor outcomes during their maternity journey. Between September 2021 and October 2022, Darzi Fellow Rosie Murphy undertook work in Croydon to explore these inequalities and what could be done to improve local services. This is the first in a series of blogs reflecting on the learnings and experiences from her Fellowship. Read Rosie's second blog focusing on key recommendations from the project and third blog focusing on the challenges of tackling structural issues during fixed-term projects.

Evidence points to a shocking disparity in maternal and perinatal death, preterm birth and fetal growth restriction, between people from black, Asian and mixed ethnic backgrounds and their white counterparts. This has a significant impact on health and economic outcomes, and while the causality is not fully understood there has previously never been a policy ambition designed to address this.

However, following the health inequalities highlighted by the Covid-19 pandemic and the impact of the Black Lives Matter movement, this is starting to change. In September 2021, NHS England requested each local maternity and neonatal system develop a strategy to address this by September 2022.

The Context in Croydon

In Croydon, work to improve outcomes for women from minoritised ethnic backgrounds was underway before this. The maternity unit delivers 3,200 babies per year and approximately 52 per cent of Croydon residents are from minoritised ethnic backgrounds, which is representative of the maternity population.

In Spring 2021, a passionate and dedicated midwife, Olamide Odusanwo, was determined to do what she could to tackle the issue of perinatal inequality. With colleagues Gina Short, Helen Chambers and Ranee Thakar, she set up the HEARD (Health Equity And Racial Disparity) campaign.

They carried out surveys with women (and birthing partners) and staff to better understand the local context. This led to changes including increased appointment length and frequency for people from minoritised ethnic backgrounds, and the creation of a dedicated service for people who felt their concerns were not being heard during their maternity journey. They also helped identify the scale of work needed to tackle the issue and the clear need for a dedicated midwife to work on the project.

This is where I came in – a midwife by background, with a passionate interest in health inequalities – I came to Croydon as part of the Darzi fellowship leadership programme. The Darzi fellowship includes a PGCert Leadership in Healthcare and a change project in the hosting trust. We are expected to explore the challenge in depth to develop long term, sustainable solutions.

Tackling a ‘wicked’ problem through involving people and communities

To scope the project we interviewed a number of stakeholders including women and birthing partners from minoritised ethnic backgrounds, as well as voluntary sector staff involved in related health equity projects. The most common themes were access, barriers and listening to women and birthing people.

We looked for data which could help illustrate these three themes. However, data on ethnicity is poorly recorded which made it difficult to establish a baseline. While work is ongoing at a national level to address this (NHSEI 2021), it was a significant limitation to the project. We also struggled to find data to illustrate the themes of listening to service users and barriers. However, the theme of not listening to women and birthing people was identified in the preliminary Ockenden report where recommendations were made about the need to improve this.

Due to its complexity the issue was quickly identified as a ‘wicked’ problem. Wicked problems need to be addressed using a collective approach. This is because no individual perspective is enough and so solutions must be built on collective knowledge. Accordingly, there was a clear need to develop a ‘collective’ to undertake the work by creating a network.

We hosted a Whose Shoes event to engage interested citizens and wider health and voluntary sector staff, to establish a network and start discussing solutions. Whose Shoes is an award-winning board game with a multi-perspective approach to transforming health and social care services by putting the person in the centre. It is renowned for its co-production ethos and has a strong track record in maternity care.

It was crucial for us to reach groups beyond those normally reached by our engagement work. As part of this we had to overcome mistrust of institutions, which we started to address by holding the event at a trusted voluntary sector partner organisation - Croydon BME Forum - instead of on hospital premises. We sent invitations via social media from this organisation, the Asian Resource centre Croydon, Happy Baby Community and Big Local Broad Green.

The event was well attended and resulted in us expanding the membership of the HEARD campaign to include local experts by experience (women and birthing partners) and wider health and voluntary sector members. This was key for co-design of the next steps. The picture board below recaps the informal discussions that were had during the Whose Shoes event, highlighting the topics that members felt were important to address.

Mindmap. Title: More Voices, maternity experiences. Sections include communication, personalised, feedback, cultural competency and community.

As is often the case with fixed-term projects, it feels like we are really starting to gather momentum, just as my year is coming to an end. Nevertheless, the brilliant work of the HEARD campaign will continue after the completion of my Darzi fellowship and as I leave, I am acutely aware of the power of people. This project started with one idea from one midwife, who shared her idea with others, who in turn shared it with more people who then all came to coalesce around the same cause - to drive the change they wanted to see in their community.

With enormous thanks to Ranee Thakar, Gina Short, Olamide Odusanwo, Manjit Roseghini, Donnarie Goldson, Mobola Jaiyesimi, Antoinette Johnson, Leila Howe, Gemma Dakin, Alison White, Jay Patel, Ima Miah, Felisha Dussard, Andrew Brown, Tai Lamard, Gill Phillips, Paul Macey and all the birthing families of Croydon who were so generous in sharing their experiences with me.

Find out more about the maternity and neonatal work happening in South West London ICS.

Find out more

Find out more about what Academic Health Science Networks (AHSNs) are doing to tackle inequalities in maternity care.

Find out more

Reflecting on the challenges of trying to change structural issues over a 12-month project: A Darzi journey

Women and birthing people from Black, Asian, or mixed ethnic backgrounds are significantly more likely to experience poor outcomes during their maternity journey.

Between September 2021 and October 2022, Darzi Fellow Rosie Murphy undertook work in Croydon to explore these inequalities and what might be done to improve local services.

This is the third in a series of blogs reflecting on the learnings and experiences from her Fellowship. Read her first blog focusing on partnering with minoritised women and birthing people and her second blog outlining recommendations from the project.

During my Fellowship, the lack of trust in institutions among minoritised ethnic communities, particularly for the NHS and maternity services within that, was profound. Mistrust of the NHS from communities who have traditionally been underserved or let down is nothing new; challenges with the rollout of the Covid-19 vaccination programme are proof of this. 

What became clearer during my Fellowship was that short-term engagement projects – those designed to tick NHS boxes rather than really listen and work together – often did more to damage these relationships with communities. Every individual, in every voluntary sector organisation that I spoke to, raised the issue of sustainability and warned me that engagement would be challenging. Engagement is built on relationships, and relationships take time to build. This means that outputs or changes don’t come quickly, but when they do, they are likely to deliver more long-term benefits.

"Engagement is built on relationships, and relationships take time to build."

The lack of time to properly sustain and embed the new relationship presented a real barrier throughout the Fellowship. Whilst I recognise the merit of the Darzi approach to scoping and appreciate how this helped to generate a more comprehensive understanding of perinatal equity, this type of project requires significant structural and institutional change. It needs long-term investment and is not suitable for a 12-month fixed term contract. The consequences of the short-term project directly impact the proposed solution - engagement.

The lack of long-term investment appeared to feed a sense of imperiousness about the way in which the NHS approaches engagement. The subject matter, location and timing is often based around the preferences of the system rather than the needs and wishes of the individual, with remuneration that is often inconsistent and bureaucratic. This in turn reinforces cautiousness or reluctance from people to participate. 

Those who do choose to engage do so hoping it will make a difference and be a valuable use of their time and efforts. In turn, we must show them the impact of their contributions such as with visual minuting or other ways to convey that their voices have been heard, even if the changes are yet to be made or seen. The process of demonstrating that the people have spoken and supporting realistic management of expectations about the pace at which change is made in the NHS is not often factored into engagement work or shared with our stakeholders.

I would argue that it is critical to sustain continued engagement with our stakeholders as time goes on. Where project participants have been invested in over a longer timescale, it is more likely that the tangible impact will be seen and felt by the communities involved and affected. As such, more trust and willingness to engage is built with the organisation. This positive impact creates a virtuous circle where engagement will feel more worthwhile and less risky to citizens.

I hope that with the appointment of a new Darzi fellow with a focus on improving perinatal equity across South West London, those who did place their trust in my Darzi Fellowship project will still see the impact of their contributions. Along with the perinatal equity and equality strategies that the Local Maternity and Neonatal Systems are being supported by NHS England to achieve, I hope that the recommendations I have made will be taken into account. However, we must be aware that the more work like this is commissioned as short term projects producing unsustainable outputs, the more bridges will be burned and the harder and less effective engagement will become.

"It is critical to sustain continued engagement with our stakeholders as time goes on. Where project participants have been invested in over a longer timescale, it is more likely that the tangible impact will be seen and felt by the communities involved and affected."

With that in mind, I wanted to finish my series of blogs with an example which I feel captures the essence of what proper investment in lived experience can achieve for all involved:

During my fellowship I worked alongside a woman who had experienced quite severe post-natal mental illness. During her recovery she was invited to join a patient participation group – a paid opportunity to talk with other women affected by post-natal mental illness about her experiences and recovery, as a part of their treatment.

As well as helping the women she spoke to, she found the experience cathartic and felt it improved her own ongoing recovery from serious illness.

Eventually, an opportunity presented itself to join a co-production forum at the same Trust. From a starting point of the uncertainty of recovery, the woman in question has now undergone a complete career change, giving up her old job to commit to improving NHS services as a lived experience lead. Her work has also helped her thrive as a mother, hopefully reducing her own risk of future illness, and improving her children’s wellbeing, all whilst making services better for others!

It’s important to note here the impact of the participation being paid. Paid lived experience contributions help to foster a sense of value of the ‘work’ the lived experience expert is contributing and maintains their dignity, as well as reducing any sense of tokenism or box-ticking on the part of the NHS. In this case, it also enabled participation over a longer period of time which is likely to have not only benefitted the trust, but also facilitated the development of the necessary skill set to support the woman to move into a paid role within the NHS.

We sometimes talk about an asymmetry between the respect we give to patients and healthcare professionals when they try to influence services; a healthcare professional “reports”, but a patient “complains”. The Patient Experience Library’s Inadmissible Evidence report discusses such issues at length. But, as the example of the lived experience lead shows, engaging with patients can bear fruit – as long as we have the bravery, determination and vision to approach it in the right way.

With enormous thanks to Ranee Thakar, Gina Short, Olamide Odusanwo, Manjit Roseghini, Donnarie Goldson, Mobola Jaiyesimi, Antoinette Johnson, Leila Howe, Gemma Dakin, Alison White, Jay Patel, Ima Miah, Felisha Dussard, Andrew Brown, Tai Lamard, Gill Phillips, Paul Macey and all the birthing families of Croydon who were so generous in sharing their experiences with me.

Find out more about the maternity and neonatal work happening in South West London ICS.

Want to involve patients in your project?

Read the HIN Involvement Strategy 2021 and learn about how we are striving to involve people and communities in making health and care better.

Read our strategy

Patient safety and experience: our response to Covid-19

Patient safety and experience: our response to COVID-19

Our Patient Safety and Experience, Healthy Ageing and Digital Transformation Teams have been working in partnership to support our local health and care system response to Covid-19.  Working as part of the NHS National Patient Safety Improvement Programmes, our work over the next six months will focus on the following areas to contribute to the NHS response to Covid-19.

Deterioration

Failure to recognise or act on signs of deterioration can result in missed opportunities to provide necessary care and give patients the best possible chance of survival (Patient Safety Alerts 2016, 2018). This area therefore continues to be a major patient safety priority for the NHS during the Covid-19 outbreak. A good system of managing deterioration includes processes and solutions that enable:

  • Early detection of physical deterioration. This includes a physiology assessment and early warning tools such as soft signs and the NEWS2 score. A growing number of digital solutions to support these processes are also available.
  • An understanding of what is “normal” for a resident.
  • Staff knowing what to do next if a person’s health deteriorates. Agreed escalation processes are required, including end-of-life preferences, advanced care and treatment escalation plans.
  • Staff to effectively communicate their concerns. This includes human factors and structured communication.

We already have a south London managing deterioration improvement programme as part of the national patient safety improvement work. Consequently, our team is contributing to national developments and assisting regional and local efforts aimed at optimising patient outcomes during the pandemic. We are also building connections with a growing number of digital projects aimed at enabling remote assessment and monitoring of patients within the community setting.

Our Programme Director for Patient Safety and Experience, Catherine Dale, is a national co-lead for the Patient Safety Collaboratives on deterioration and was instrumental in the delivery of a very successful national webinar for GPs working hard at the front line to tackle Covid-19.

“High quality, safe care can be achieved through preparation, planning and education; the National Patient Safety Improvement Programme has created this important national program to rapidly develop the skills and knowledge for bedside staff to deliver safe tracheostomy care everywhere.”
Brendan McGrath – National Clinical Advisor for National Patient Safety Improvement Programme Covid-19 Response (Safe Tracheostomy Care); Intensive Care Consultant, Manchester University NHS FT

The team will be very happy to hear from you if you want to know more about any of our projects above or discuss support for your local work, contact hin.southlondon@nhs.net

You can also access nationally available resources and webinars on the AHSN Network Patient Safety COVID-19 webpage here.