Co-production and Compassion in the time of COVID-19

This blog was written by the Maternity Voices Matter team – Aygul, Emily, Abuk, Vita, and Anna, an independent group of maternity service users creating change through peer-led research, Participatory Appraisal and  co-production. They were also one of our Phase 2 Pilot projects, and have been helping us learn about what works and what doesn’t when co-producing. 

Hit by a global pandemic, and with life still under lockdown, it feels surreal to think that it was only a couple of months ago that we held our first co-produced event as Maternity Voices Matter. For those of you who don’t know who we are, Maternity Voices Matter is a group of trained service users using a peer-led approach to community research to include the voices of families in co-producing and improving maternity services. Our aims are to listen to service users, give feedback to health professionals and ensure that service users’ experiences are at the heart of service provision. We believe that this is absolutely vital to delivering improvements for all.

We have already listened to the maternity experiences of over 200 women from diverse backgrounds. Every story we have heard has been moving, interesting and valuable. Most, if not all the women we spoke to were disappointed that they had not had the opportunity to talk about their experiences. Many wanted to find answers to questions about their maternity journey in a place that felt safe, open and neutral.

Our Pilot Project

We were thrilled when our team received funding from UCL Centre for Co-Production to continue this invaluable work and further our research. We decided to focus on BAME women and their experiences in maternity care. Rather than just integrating co-production methods into our work, we decided to be brave and ambitious, and co-designed and co-produced the entire project. Of course, as excited as we were to embark on this co-production journey, we also had our fears about things that could go wrong. Would we be able to achieve all our aims? Were we too ambitious? How well would we work with our co-production partners? Would the project fizzle out towards the end?

We soon discovered that co-production not only helped us address all these fears, but provided a strong platform to grow and succeed in ways that we had never anticipated. Without our partners from NEL CSU, UCL Maternity Services, UCL Maternity Voice Partnerships and Manor Gardens Welfare Trust, we would not have been able to reach some of the most seldom heard groups. Having a ‘horizontal’ set-up where all partners were hierarchically equal proved to offer a much more relaxed and stress-free way of working whilst delivering better results. Some of the elements provided by each partner were:

• contacts
• access to community group
• financial support
• services in kind
• access to venues for meetings or sessions
• languages and interpretation services
• knowledge of various cultural customs
• inside knowledge of the care system
• access to maternity departments.

It was truly eye-opening to see how different organisations could pull together and utilise their various strengths and influences to collaborate in productive ways and create meaningful change. Above all, we would not have been able to bring together such a diverse group of people, in such a powerful way.  Co-production enabled a supportive environment, where no one felt judged. Every contribution mattered. We looked forward to every meeting and never fixated on how much each person contributed. Instead, what mattered was acknowledging the different strengths and skills that each person brought. Often, team members volunteered to do things they felt confident to take on, we never felt that things were imposed on us.  We discovered the value of trusting each other, and the possibilities that open up when you are brave enough to let go of control.

Pre-Covid-19 and with no social distancing measures in place, we were honoured to hold our very first BAME Maternity Voices event at Islington Town Hall, attended by more than a hundred people. Families, frontline health workers, midwives and representatives from a wide range of specialist services came together to share our co-production journey. We watched and listened to the maternal experiences of some of the most seldom heard groups, re-enacted powerfully through the performances of Playback Theatre. Together, we explored the potential of co-production in amplifying the voices of seldom heard and marginalised groups. There were moments when there was scarcely a dry eye in the Council Chamber. Mothers of various ages and many different backgrounds came forward spontaneously and freely to tell their stories and then sat and watched as the actors brought these stories to life.

Compassion: the heart of co-production

There is another element at the heart of co-production that is so often overlooked and side-lined – compassion.  Compassion fuels co-production, and without it, co-production is meaningless. We drew strength from being compassionate towards each other. The continuous support, and the feeling of a strong and unwavering safety net, released us from the pressure of sole responsibility and gave us a strong feeling of duty and a willingness to work hard. Today, in the midst of the devastating reality of the coronavirus pandemic, the heart-breaking losses and the extraordinary challenges it poses, we feel the value of compassion even more strongly.

When the pandemic hit, and as we became confined by lockdown, we had to reassess our Maternity Voices Matter work.  It was challenging and disorientating. All of our team are mothers and carers, and like many others we faced the challenges of adjusting to life in lockdown. We really wanted to find creative ways to continue working together as a team, to reach people remotely where possible and continue our work as Maternity Voices Matter. However, the lockdown meant that we were not able to co-produce work as we did before. We held a Zoom meeting to discuss the way forward, but quickly realised that right now we needed to be compassionate towards each other. We realised that Covid-19 had drastically changed our availability, and imposing targets and deadlines on each other in these extraordinary times would go against the very core principles of co-production.

Although we have been unable to carry out our community research sessions, we have continued working in different capacities. We communicate almost daily and keep up to date with news regarding maternity services. We have accepted that we need to slow down as our efforts and energies are needed in our homes. Initially we found it hard to accept that we had to step back from our active role, but slowly we are finding a new balance and restarting the process of regrouping and planning for the future.

In the meantime we are keeping our ears to the ground. Several Covid-19 headlines have caught our attention- especially ones which report on the inequality of outcomes for black people and other ethnic minorities with Covid-19. These horrific headlines mirror those associated with our recent project where we were speaking to women and their families amid the MBRRACE report. This found that black women were 5 times more likely to die in childbirth, and other ethnic minorities had poorer outcomes than white women. These issues need urgently looking into. We hope to play our part in facilitating discussions and pushing for improvements once the lockdown has been eased. We will be there again, to listen to these voices and to carry them as far as they need to go. Co-production will certainly be at the heart of everything we do.

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