The Postcode Lottery of Neonatal Follow-up: How Health Visitors Can Support Children Born Prematurely

7th September 2026

This Neonatal Intensive Care Awareness Month, premature baby charity The Smallest Things is highlighting a hidden postcode lottery – more than one in five children born prematurely are missing out on key developmental checks. Read their iHV Voices Blog written by Catriona Ogilvy below.

Catriona Ogilvy, Founder and Director of Policy & Campaigns, The Smallest Things

Each year in the UK, approximately 53,000 babies are born prematurely (prior to 37 weeks’ gestation). Prematurity doesn’t end however when parents bring their baby or babies home from hospital. While recovering from the trauma of neonatal intensive care, parents are at much greater risk of mental health difficulties and their babies are more likely to experience frequent hospital re-admissions, respiratory and feeding challenges, as well as difficulties reaching developmental milestones and lasting learning needs.

The earliest life experiences for children born prematurely begin in and are shaped by the medical world of neonatal intensive care – weeks or even months before their due date. This traumatic and early start to life exposes children to emotional, physical and environmental stressors which are known to affect the developing brain, and children born prematurely consistently have poorer early years and lifelong outcomes compared to children born at term.

Early identification of needs and support for children born prematurely is crucial. The National Institute for Health and Care Excellence (NICE) 2017 guideline, Developmental follow-up of children and young people born preterm, recommends a targeted programme of enhanced neurodevelopmental surveillance for children most at risk. However, there are huge variations in the delivery of neonatal follow-up services across the UK, with more than one in five children missing out on the recommended enhanced surveillance assessment at two years old and just 6% of neonatal units offering the recommended four-year developmental check for those most at risk¹.

Health visitors are uniquely placed to support the early development of children born prematurely, providing continuity as families move between neonatal, outreach and hospital services, and support throughout the early years. The longitudinal nature of health visiting was recognised in the 2024 House of Lords Preterm Birth Inquiry, Reducing Risks, Improving Lives, which acknowledged that many needs of children born prematurely are only identified through monitoring progress over time.

Health visitors can play a key role in identifying emerging developmental needs and supporting parents to understand the potential longer-term impact of prematurity. They can also help ensure that children who are eligible for recommended neurodevelopmental follow-up at two and four years are not lost to follow-up, and that concerns are identified at the right time so early support can be put in place.

NICE² recommends that:

Children born before 30+0 weeks’ gestation should receive a neurodevelopmental assessment at two years (corrected age). Yet more than one in five eligible children are currently missing this key enhanced surveillance assessment.
Children born before 28+0 weeks’ gestation should receive enhanced surveillance and a neurodevelopmental assessment at the age of four years (uncorrected). Shockingly, only 6% of neonatal services are offering a four-year assessment.

The postcode lottery is stark across the UK. While no neonatal network meets the recommended standard, in North London just 68% of children received their follow-up, compared with 77% in Yorkshire and Humber, and 86% in Wales¹.

Premature birth does not mean a child will have special educational needs, but it does significantly increase the likelihood, with children born prematurely more likely to have a special educational need than children born at term. Those born on or before 28 weeks’ gestation are at greatest risk of later-emerging cognitive, behavioural and executive functioning difficulties – many of which are not fully apparent by the age of two. That is why the four-year assessment is so important: it is specifically intended to identify difficulties before a child starts school.

As part of the Government’s school-readiness ambition, set out in Giving every child the best start in life and the Healthy Child Programme, health visitors have a central role, with explicit recognition that school readiness isn’t something that happens in nursery or Reception, but starts with health and development from pregnancy onwards.
While just 6% of neonatal units offer the recommended four-year developmental check, health visitors can provide a vital safety net for children born prematurely during this important period – identifying emerging developmental needs, ensuring parents understand the potential longer-term impact of prematurity and, crucially, bridging the gap between health and education by supporting parents to share their child’s preterm birth history and its potential impact with early years settings and schools.

No child born prematurely should miss out on the developmental follow-up they need simply because of where they live. This is why The Smallest Things is calling for consistent follow-up across the country, alongside greater recognition of the role health visitors play in supporting children born prematurely and their families after neonatal intensive care.

This Autumn, the charity will be launching a new campaign to recognise prematurity as an ongoing risk factor and to highlight the importance of close surveillance and recommended follow-up. Health visitors are central to identifying early needs and, alongside recommended neonatal follow-up delivered consistently across the UK, a health visiting workforce equipped to understand and respond to the lasting impact of prematurity will help identify needs earlier, support families better, and give children born prematurely the best possible start as they enter school.