Who we are
Welcome to the TVW Parent Advisory Group (PAG)
We are a group of parents/carers, and their families, who have experienced neonatal care in one (or more) of the 14 neonatal units across the Thames Valley & Wessex Neonatal Network, at some point in our lives.
Meet some of the parents who have supported the PAG
What we do
Our focus is on helping to improve the experiences of families on their journey through neonatal services now and in the future. We are currently involved with the areas of work below:
- Mental health support
- Trauma-informed care
- Repatriation of babies to a unit closer to home
- Parent involvement in ward rounds
- Implementation of Family Integrated Care on the units
- Neonatal journey cards
- Bereavement/Palliative Care
- Outreach and transitional care
We’re proud of our work on these projects:
- V-create Moving Closer to Home animation
- Its Ok to not be OK poster campaign
- Our upcoming V-Create video for parents to send to family, friends and employers to explain what it’s like arriving in a neonatal unit
Transfer Closer to Home: The neonatal repatriation of your baby
Watch our short animation:
You are not alone
On World Prematurity Day we recognised and celebrated all neonatal babies and their families wherever they were on their neonatal journeys.
Joining the PAG
The Strategic Network recognises the Parent Advisory Group (PAG) as a vital partner in the design and delivery of services, ensuring that the experiences, insights, and voices of parents and families are central to our work. By working collaboratively with those who have lived experience of neonatal care, the Network is able to shape improvements that are meaningful, compassionate, and responsive to the needs of babies and their families. The PAG plays a key role in strengthening co-production, enhancing patient and family experience, and supporting the continuous development of high‑quality care across the region.
Following the recent merger of the Thames Valley & Wessex (TVW) and Kent, Surrey & Sussex (KSS) Operational Delivery Networks under the umbrella of a South East (SE) Strategic Network for Critical Care; the Neonatal ODN Network is currently undertaking an internal review and reorganisation. To ensure a cohesive and consistent approach to parent and family engagement across the region, recruitment to the PAG is being temporarily paused. Parents and families are still encouraged to register their interest in joining; however, new members will not be onboarded until after the summer, while we work in collaboration with our existing groups to establish a unified South East PAG that reflects the needs and diversity of the whole region.
Share your experiences:
We are keen to hear from parents who wish to share their experience to help improve neonatal services for all families.
We have our TVW Neonatal Survey which can be found on the button below.
This is a survey where families can feedback anonymously.
Should you wish to provide feedback more directly, then we are happy to hear from you, and can make a time to speak to you. Please use the following email below:
Our Network account: england.tv-w-neonatalnetwork@nhs.net
We are striving to improve the care for families and would especially like to hear your thoughts for any improvements or changes that you would like to see.
Follow us and share our opportunities to get involved
Terms of Reference
Being a member of the PAG is voluntary and you are under no obligation to remain part of the group or attend meetings. You can be involved as much or as little as you feel comfortable.
The Network will reimburse parent members of the PAG for reasonable expenses incurred during their activities, as a member of the group (those that are registered). This will include travel and parking costs. Children are always welcome to our meetings online or in person.
Please find our Terms of Reference here. We also have coproduced rules of engagement where we agree to respect everyone’s views and give everyone equal opportunities to be involved in whatever way they feel comfortable to work with us.