The Parent Advisory Group is the parent representation within the London Neonatal ODN and the only parent group that directly feeds into the work of the ODN and influences changes. The group works in conjunction with other charities and groups in London to understand and feedback the concerns of parents on neonatal units.

Chair of PAG: Sibylle Erdmann


“As chair of the PAG, I sit in on the quarterly meetings of the operational delivery network of all London area neonatal units (of which there are 27!). I represent the parent point of view while I also respond to the questions of the network. Beyond being the parent voice, I understand my role to be also about the presence of the parent in the room.”


Current Project: Family Integrated Care

The PAG is dedicated to the implementation of FICare initiatives on units and has sent a formal letter to all London units advising them on the benefits of parent supported ward rounds (where you introduce your baby and join the discussion) and how this can be easily implemented. We received great response with several more units taking on the initiatives and many more now in discussion. Ask your unit now if you can take part!

Also… Desert Island Discs

We are putting together individual parent podcasts with music and stories to be played on units utilising headphones during wardrounds. If you want to be a ‘NICU Castaway’, get in touch!

and… Case for Change on Engagement and Involvement

The PAG has just completed a landmark document on parent engagement and involvement on neonatal units which will suggest new initiatives to improve parent access. This has included uninterrupted presence on ward rounds, better communication between staff and parents, and access to medical notes.

The aim is to improve parent involvement to unsure better development of the baby and family, and give parents knowledge for their potential role as carers. The document has been supported by NHS England and Bliss and is a significant achievement for the parent group.


The group meets quarterly to discuss their current project and future aims, as well as current initiatives of the London units. The meetings take place either at the ODN on Tottenham Court Road, or on neonatal units, which is a great opportunity to hear about the holistic approach of a whole unit.

The PAG produces quarterly newsletters on their work and meeting updates, which are available on units for parents to read and available for download here.

If you would like to get involved in the PAG to share your experience, attend a meeting, or find out more, please email