The publication of the report Better Births: Improving Outcomes of Maternity Services in England in 2016¹ and the subsequent ambition and vision of the national Maternity Transformation Programme (www.england.nhs.uk/mat-transformation) for a safer and more personalised care, is now embedded across England. From the outset, Lincolnshire has recognised the importance of an individualised neonatal pathway in its Better Births Maternity Transformation Programme and the contribution of families within this pathway, such that Lincolnshire was the first Local Maternity and Neonatal System (LMNS) to recruit a neonatal project lead and create a ‘neonatal parent voice’ working across the system.

Lincolnshire’s neonatal model is inextricably linked to maternity and obstetric services, community services and the children and young people’s pathway. This collaboration, together with Neonatal Parent Voices, facilitates a fully integrated seamless neonatal service across Lincolnshire from antenatal care, through birth, and on to home support.

Drivers for neonatal care

The current national neonatal agenda informs us of the need for families to be at the heart of neonatal care in terms of choice, access and continuity of care.¹ Furthermore, the concept of family-integrated care demonstrates that involving parents in the care of their baby is paramount.^2,3 Certainly, empowering parents and placing families at the centre of care is supported by various reports, standards and studies.^4-10 Alongside this and most recently, the Neonatal Critical Care Review in 2019 is clear in its demand for the delivery of a high quality, family-centred neonatal care service.¹⁰ The Neonatal Critical Care Review emphasises the need that parents are not bystanders in the care of their child, but part of the solution; outcomes are better for babies whose parents are able to play an active role. Indeed, the British Association of Perinatal Medicine (BAPM) reminds us to listen, hear and respond to what is being said by the parents/carers.¹¹

The development of a neonatal parent voice

It is important to mention that co-production is one of the seven themes and recommendations of the Better Births report:

‘Co-production is when you as an individual influence the support and services you receive, or when groups of people get together to influence the way that services are designed, commissioned and delivered.’¹²

Certainly, our neonatal strategy has been built on extensive engagement with women and their families who have a premature baby, sick baby, or baby with special con-siderations. We respect and understand that each locality will have their unique require-ments and due to the specialist nature of neonatal services, specialist units can be located many miles from the baby’s home. Furthermore, Lincolnshire covers a large rural area and a significant number of families will have experienced intensive neonatal care outside of the county for at least part of their neonatal journey. Therefore, concerns such as travelling and separation from their baby become apparent. Within our neonatal pathway we wanted to ensure we reached out locally to our neonatal families to hear their views, stories, concerns and thoughts. So as a start, and with support from our Early Years Team, we organised ‘listening clinics’ in local children’s centres within Lincolnshire County Council in 2018, to hear the voice of our neonatal families (FIGURE 1).

FIGURE 1 An example of a listening clinic poster.

The listening clinics

The listening clinics were supported and attended by the lead nurse for the East Midlands Neonatal Operational Delivery network (EMNODN)¹³ and other professionals within the system, which gave us a platform and framework to address any needs and concerns (FIGURE 2). By speaking to families, we were able to consider how it might feel to be the parent of a premature or sick baby within Lincolnshire; working with them should improve the parental experience and their involvement, leading to improved care and outcomes for babies. All listening clinics were documented (with the families’ consent) and the actions highlighted were included in our neonatal work-stream plans. FIGURE 3 shows some examples of actions from the neonatal listening clinics.

FIGURE 2 Families and healthcare professionals at a listening clinic.

FIGURE 3 Some examples of actions from the neonatal listening clinics. FaB=Family and Baby support service – a point of contact throughout a family’s journey. Key: EMNODN=East Midlands Neonatal Operational Delivery network.

Neonatal Parent Voices

An amazing group of passionate parents took part in the listening clinics and from this the Neonatal Parent Voices emerged (FIGURE 4). The group was created in January 2019 under the umbrella of the Maternity Voice Partnership (MVP) and the MVP chairperson.

FIGURE 4 Some members of the Neonatal Parent Voices group.

We know that being the parent of a premature or sick infant requires advocacy, endurance and persistence and the neonatal parent voice is at the heart of our transformation programme. These parents have been a huge resource and are central to our neonatal work-stream. Shared visions have been formed, strategies identified and a plan has evolved. Our parents find families on social media, listen to stories, signpost and provide support both in hospital (FIGURE 5) and in the community. They are able to influence change within a safe, structured framework that feeds into the LMNS. Representatives from Neonatal Parent Voices have presented at national conferences and represent parents at national and local meetings. A neonatal logo, identity badges and a banner have been produced to complement their professional ethos (FIGURE 6).

FIGURE 5 Support in hospital. Due to the COVID-19 pandemic, plans are currently evolving for virtual Neonatal Parent Voices support groups.

FIGURE 6 Neonatal Parent Voices achievements.

Developing our neonatal pathway with Neonatal Parent Voices

As part of co-production within the system, we have developed operational neonatal work-stream plans that have brought a focus and systematic approach to the neonatal pathway. Stakeholders within perinatal mental health, primary care and providers are working together with their own active neonatal plans, including Lincolnshire County Council, Lincolnshire Clinical Commissioning Group, United Lincolnshire Hospitals NHS Trust, and Lincolnshire Partnership NHS Foundation Trust. The neonatal work-stream plans address the criteria required for neonatal care within the Maternity Transformation System1 and, importantly, the Neonatal Critical Care Review.⁷ A representative from Neonatal Parent Voices attends the neonatal work-stream meetings and has developed a work-stream plan; they are a key influence in networking and participating within all eight plans (FIGURE 7).

FIGURE 7 The eight neonatal work-stream operational plans and ownership within the system.

Woking in collaboration with the EMNODN

The EMNODN is one of 11 clinically-managed operational delivery networks for neonatal services in England. Its purpose is to make certain that babies who require neonatal care and their families/carers receive the best care as close to home as possible.¹³ Furthermore, the EMNODN demands assurance from neonatal services that care is of a high standard and meets national recommendations. As part of the assurance programme the EMNODN carries out service reviews of each unit within the network. The Neonatal Parent Voices in Lincolnshire has participated in local reviews and attends the Network Parent Advisory Group meetings. Central to the success of the Neonatal Parent Voices are these strong communication links with the EMNODN.

Summary

We recognise that neonatal families have a unique and often very difficult journey and that their voice is pivotal to care. Family-integrated care is fast becoming the standard of care across neonatal units in the UK and certainly the current agenda for neonatal care paves the way for a neonatal parent voice. The Neonatal Parent Voices within our Better Births programme has given us the inspiration to drive forward with our neonatal pathway, crossing cultures and multi-professional boundaries and overcoming demographic challenges. Lincolnshire has put families first, heard their voices and been proactive in multi-professional collaboration. A culture has been created that gives parents ‘permission’ within the system to make decisions, and a voice to demand a safe, seamless, high quality neonatal service.

Acknowledgements

Thank you to Tracy Pilcher (SRO LMNS Lincolnshire), Linda Hunn (Director/Lead Nurse at EMNODN), our MVP Chair Amanda Pike and Neonatal Parent Voices: Jo Vickers, Alison Marriott, Isobel Pollitt, Katherine Etoria, Tilly McGill, Emma Hall, Tyla Clancy, Heather Ind and Layla Moore. Thank you also to Clare Brumby (Maternity Transformation Lead Midwife) and Tracy Clinkscales (Maternity Transformation Project Support Officer).