TRPG SEND Outcomes Project resources

Follow up Programme for high risk babies from the NCLPN

Data collection forms for the Outcomes Project

Click here to see the Outcomes Questionnaire for individual infants

Click here to see the Denominator Data form

Nearly 200 high risk babies are born every year in the hospitals from the North Central London Perinatal Network ,of which about 150 survive to discharge. High risk babies are considered by our networks as the less than 29 weeks gestation or less than 1000 grams, or term babies who have suffered from encephalopathy severe enough to affect their long term outcome.

The NCLPN provides the best quality treatment for these babies while they are in the neonatal unit including investigations and evidence based management .All neonatal staff across the network are fully committed to care for these babies in order to provide the best possible outcomes.

The follow up programme starts in the NICU, by empowering parents to bond with their babies through interventions like skin to skin contact and developmental care implementation. Then,at discharge, the commitment is to provide a state of the art follow up programme to support parents on their journey aiming to get their best of their children within the context of a normal life.

The neurodevelopment follow up programme requires sequential assessments at different ages, four in the first year, and two in the second year of life.
Ideally provided by developmental therapists throughout the network, these assessments are designed to screen and identify developmental problems with the aim of providing anticipatory guidance to parents and improving long term outcomes in babies.

Liaison with the Neonatal Units and the Community Paediatricians from the SHA provides more specific intervention if required.

The main objective is accessibility. Currently the programme is supported in all the Network hospitals.A developmental therapist, part funded by the network  is in post, and she has a major role in the developmental assessment of the babies across the network . All efforts are directed to seeing the infants as close to home as possible, ideally at their local Child Development Centres or Children's Centres.

The NCLPN funds a full-time Follow-up Coordinators post, the main purpose of this role is to ensure there is a strong link between the hospital and community services.

Angela Huertas
Consultant Neonatologist UCLH

Baby Assessment