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

Patient Experience Patient Safety

January 9, 2023

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.