Perinatal Optimisation Parent Information Leaflet
View the leaflet available in 25 languages on the London Neonatal ODN website.
Case Study: Co‑producing a London‑wide Perinatal Optimisation Parent Information Leaflet
UCLPartners and the Health Innovation Network (HIN) South London collaborated to create a Preterm Birth Perinatal Optimisation (PO) Leaflet for use across all London maternity and neonatal units, as a companion to the BAPM Baby Passport. The leaflet is designed to give families at risk of preterm birth access to clear, consistent, and compassionate information, regardless of where they receive care.
This resource was co‑produced with London Maternity and Neonatal Voices Partnerships (MNVP) groups, the London Regional Maternity Team, the London Neonatal Operational Delivery Network (ODN), hospital PO teams, The Motherhood Group, and Bliss.
Background
In response to stakeholder feedback and the wide variation in information available to patients across London maternity units, we created an information leaflet for women, birthing people, and families experiencing or at risk of preterm birth to help address this gap. The leaflet was designed to complement the BAPM passport, which had been implemented across London to support antenatal counselling.
The leaflet explains optimisation elements in plain English, to a reading age of 8, and includes links to additional information and resources. The HIN commissioned translations of the leaflet into 25 languages in two formats: a printable A5 booklet, and a digital ‘scrollable’ version for viewing on personal devices. To support accessibility and inclusion, the leaflet is designed to be:
Dyslexia safe.
Colour vision deficiency safe.
Gender-neutral (e.g., “you/your baby/your pregnancy”).
Inclusive of an audio description.
In addition to the seven service users, we collaborated with HIN Clinical Faculty experts, including Consultant Obstetricians Marina Fernando and Manju Chandiramani, and Consultant Neonatologist Nikki Crowley, to develop this resource. The London ODN also provided further review and validation. The HIN communications team supported the formatting, editing, and image design.
The leaflet is hosted on the London Neonatal ODN website.
Method
Engagement and preparation
To support meaningful participation, a pre‑session questionnaire and consent process was shared with parents ahead of an online co‑production workshop. This included collating insights from the pre-session to determine what parents valued about the existing BAPM Baby Passport, to inform the design of the leaflet. 13 service users completed the questionnaire - participants included mothers and a small number of fathers.
85% of parents rated the existing BAPM Baby Passports to be 'extremely useful' or 'very useful'. Additionally, they valued that the baby passports were: clear and easy to understand; helpful to parents feeling informed and more in control; and reassuring and practical.
Online co‑production session
The virtual session brought together 14 service users from diverse cultural backgrounds and a range of preterm and neonatal care experiences. Participants were compensated to recognise the value of their lived experience and contribution to the session.
Key themes identified include:
Information Needs
Simple, accessible explanations of preterm birth and neonatal care.
Sensitive delivery of information, with time to process.
Consistent messaging across all London hospitals.
Specific Requests
More structured antenatal counselling and regular, clear postnatal updates.
Realistic expectations of NICU, including transitions between care levels.
Plain‑language definitions of medical terms.
Stronger visibility of mental health support.
Clear transfer and discharge information.
Parental Experience
Preterm birth is emotionally overwhelming; information must be provided with empathetic messaging.
Parents want to feel involved and empowered in their care and the care of their baby.
Materials must reflect cultural diversity and be accessible to all families.
Results
Parent's feedback on the leaflet
“This would have been invaluable to me if I would have received this pre‑birth.”
“I like the idea of having a QR code by each section, to make more information easily accessible.”
“It’s very informative and I’ve learnt loads about preterm babies even though I’ve had one.”
“It’s simple, effective and to the point.”
“Less is more. It’s nice to have a hard copy to refer to.”
“I would’ve loved reliable information—Google brings up all sorts of answers from all sorts of websites and opinions.”
Clinician's feedback on the leaflet
“Good that it is available in other languages.”
“Enabled staff to provide relevant information and empower parents in decision making.”
“Helps parents read and understand the information.”
“It has all of the information in one place.”
Some clinicians fed back that they tailor their approach to make families aware of passport and leaflet and offer it at different stages. For example: mentioning it at early appointments; offering it at a pre-term birth clinic; and sharing it during suspected preterm labour.
Get in touch
For more information about preterm birth perinatal optimisation projects, get in touch via email.
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