The Smallest Things Manifesto 2024

 
 

Supporting families after neonatal intensive care and improving the long-term health and educational outcomes of children born prematurely. 

The new government has the opportunity to change the lives of the more than 50,000 children born prematurely each year. By taking simple steps, it can support families on a journey we know lasts long after leaving neonatal intensive care.

“I feel that I ran on adrenaline during the eight weeks that my boy was in the NICU and it hit me like a bus once we returned home – anxiety, postnatal depression, PTSD. I think the lack of understanding from some relations was a big factor in this. Also, the reality of all myself and my baby had been through only hit then too. ”
— Mother of very preterm baby

Each year in the UK approximately 50,000 babies are born prematurely (prior to 37 weeks’ gestation). Following an often sudden and traumatic birth, a baby is taken straight to the neonatal intensive care unit, marking the beginning of an agonising journey of separation, anxiety and uncertainty for parents and carers.

Prematurity doesn’t end, however, when parents and carers 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 problems, children are frequently re-admitted to hospital, and parents tell us that their needs are often overlooked.


We call on the new government to commit to:

    • Introduce a new GP 6-week ‘After NICU’ wellbeing check for parents, helping to identify mental health needs in a timely manner and supporting parents to access appropriate psychology services.

    • Make training in understanding and recognising the complex mental health needs of parents of babies born prematurely easily accessible for GPs and health visitors. All health visiting teams and GP practices to have a named and trained neonatal lead.

    • Keep families together and support parents to be with their baby or babies in neonatal intensive care through onsite accommodation and financial support for parents who will not qualify for new Neonatal Care Leave and Pay.

    • Strengthen communication and pathways between hospital, outreach, health visiting and follow-up services to ensure a smooth transition between hospital and home with robust support in the weeks and months after neonatal intensive care.

    • Have a dedicated Neonatal Lead in every health visiting team. Health visitors are uniquely placed to support families and children born prematurely, from supporting families through illness and repeated admissions to hospital, to supporting Early Years development and readiness for school.  

    • Ensure that prematurity, and needs linked to preterm birth, can be recorded in any digital version of the Red Book.

    • Improve the sharing of information between health and education services for children born prematurely. 

    • Introduce a statutory requirement for all school and Early Years settings to ask about a child’s birth history at registration. 

    • Pledge for all UK schools to become ‘Prem Aware’.