I have devoted the past decade to reflecting on childbirth, prematurity and living with health differences, based on my lived experience as a parent carer to two young children, both born prematurely.
The World Health Organisation reports that today, as every day, 810 women and 6,700 newborns will lose their lives and nearly 5,400 babies will be stillborn.
COVID-19 lead to loneliness and anxiety that marked the experiences of pregnancy and childbirth. As health care services have grappled with new ways of working as a result of the pandemic, for me, it’s networks of care and the accompanying mindset that have made all the difference.
All about listening
For me, it’s networks of care and the accompanying mindset that have made all the difference.
In my volunteer position as parent representative on the Operational Delivery Network (ODN) of London Neonatal units, my focus was increasing the involvement of parents as many would act as future health advocates for their children. In this network of over 20 units, more than 10,000 babies are cared for annually. By increasing parental participation in ward rounds and providing greater access to medical notes, parents became a more integral part of the care teams around their child. The network structure allows for best practice sharing while serving each local community according to their needs.
Suzanne Sweeney, Network Director, emphasises the benefits of having parental input in the neonatal units. ‘It is all about listening to parents and families,’ are her words and then our conversation leads to the Ockenden Review, a review of maternity services at a UK Hospital Trust. ‘Listening to women and families’ was an urgent action point. Good listening is in the systemic and the personal: creating opportunities for formal input into the system while also attending to the quality of personal encounters.
Suzanne and I agree that in all the challenges of the pandemic, there have been new possibilities such as addressing old silos and adopting a more competency-based way of working. Moreover, neonatal and maternity networks are joining up for the benefit of safer care. Suzanne says: “there is a change in the way we work and the way we think about work.”
Creating new roles
In recognition of the fact that the time between hospital and home needs careful bridging for families returning from neonatal units, a new kind of role has recently been created. Ailie Hodgson is in her new position of Care Coordinator in the Northern ODN, stretching from South Tees to the Scottish borders and across the west of Cumbria.
She is most proud of the feedback she receives from families who feel ‘really listened to’.
Ailie’s work includes supporting parents to access specialist health professionals, such as mental health support and promoting family-integrated care. She is most proud of the feedback she receives from families who feel ‘really listened to’.
New roles are examples of what Jeffrey Braithwaite called ‘systems hardware’ in contrast to the ‘software’ of everyday interaction. In his article on how Complexity Science offers ways to make changes, Braithwaite also describes a third way, by changing the collective mindset. Appreciating the complexity of care systems and understanding how unpredictable they are is essential for improving them.
Multidisciplinary networks of support
My doctorate was entitled ‘On healthcare and healing, learning from and for liminal times’ because at the time I felt that I was submerged in a liminal existence, living in and out of intensive care units. In anthropological terms, the liminal refers to an in-between state. In this ongoing pandemic, I have often felt as if the whole world had joined me in this liminality, the chaos and the opportunity.
Now we are in a unique co-production that serves the holistic needs of the infant, placing learning with parents at the centre.
I wish that our family could have benefitted from the support of a Care Coordinator to help us come out of our liminal state back then. I also longed for specialised yet coordinated input into the long-term developmental path for my children.
There is a group of people who have been thinking about this, too. I joined a multidisciplinary group of practitioners, parents and academic researchers interested in Early Intervention, Ei SMART. With some of my team members, our paths had crossed before, when we played different roles to each other. Now we are in a unique co-production that serves the holistic needs of the infant, placing learning with parents at the centre.
I open the door to my friend. We met on a neonatal unit in 2010 when our children were in neighbouring incubators. We chat about the scars on our children, back then they were minute and now, proportionate to our children’s growth, stretched out across whole body parts. I wonder whether this is how it works with our internal scars, too. They are still with us, they fade but grow as we do. Let’s learn from them but not forget how they came to be there.
Questions for health improvers
As a healthcare improver, I want to keep on asking myself:
1. How can I apply the kind of skills that it takes to bring about change? I have witnessed sheer perseverance, frank conversations and healthy pragmatism in the face of reams of spreadsheets.
2. How can I be mindful to keep the systemic and the personal intertwined, for instance, we cannot ask parents to share their highly personal stories and then not incorporate patient aspects into the way we build organisational structures.
3. How can I keep on seeing opportunities despite the challenges of liminal times, bringing down silos in a safe manner?
4. How can I contribute to foregrounding maternal and newborn safety as an issue affecting all of us, parents, families, and wider communities.
How are you using networks to improve patient care? Please add your comments below!
David Gilbert (2020) The Patient Revolution: How we can heal the healthcare system, Jessica Kingsley Publishers