Guidance

Newborn and infant physical examination screening pathway requirements specification

Published 21 June 2021

Applies to England

This document provides an overview of the newborn and infant physical examination (NIPE) screening examination by describing what should happen at each stage of the pathway. It should be read alongside other guidance for the NHS NIPE programme, including:

• screening standards
• programme handbook

Please also read the general information relevant to all the NHS screening programme pathways.

NIPE screening examination

The NHS offers a physical screening examination to all eligible newborn babies born in England. This examination ideally is performed within 72 hours of age and will be repeated at 6 to 8 weeks of age. This enables early detection of congenital defects and problems with the eyes, heart, hips and testes.

Any abnormalities suspected or detected, and any clinical concerns identified, will lead to a prompt referral for early clinical assessment by the relevant clinical expert.

Babies are eligible for NIPE newborn screening from birth to 6 weeks of age.

The NIPE infant screening examination should be performed at 6 to 8 weeks of age for all 4 target conditions, as some conditions can develop or become apparent after the newborn screen. This is usually undertaken in a primary care setting.

Please note that the NIPE infant screening examination is not a formally managed part of the national programme and local commissioners will provide scrutiny (as required) to oversee this part of the examination. There are no NIPE national standards for the infant examination as there is no way of systematically measuring them. See the NIPE programme handbook for guidance.

Find out more about the examination in the programme overview.

End-to-end pathway

The pathway for the NIPE newborn screening examination consists of the following elements.

The dotted boxes and numbered labels show how the different parts of the pathway map to the generic headings used below.

An accessible text version of the pathway is also available.

1. Before screening test

These requirements relate to making sure that screening is offered to the correct babies.

Providers must have systems in place to:

• identify the eligible population through a birth notification to the NIPE national IT system (called SMaRT4NIPE or S4N) or notification to the screening team by the local child health department
• enter accurate and timely data into the NHS number registration patient demographic system (PDS) or birth notification application (BNA) to enable automatic transfer of demographic information into the NIPE national IT system – the local maternity service or, in exceptional cases, the child health department, is responsible for this
• complete data entry, where this is the provider’s responsibility, as soon as possible after birth and ideally before any other newborn screening is performed
• identify eligible babies where an NHS number has not been generated and undertake screening without delay
• add records manually where a record does not exist in the NIPE national IT system for any eligible baby
• offer screening to all eligible babies
• meet national NIPE newborn screening timescales when babies are:
  • born at home
  • transferred home before newborn screening is completed
  • transferred from one acute provider to another
• offer screening to eligible babies who move into the area and have not been screened – these babies remain eligible for NIPE newborn examination until 6 weeks of age and the receiving maternity or primary care service is responsible for ensuring that NIPE screening is completed
• make sure parents or carers receive verbal and digital information (see Screening tests for you and your baby (STFYAYB)) about the NIPE newborn screening examination during the antenatal and immediate postnatal periods and before the screening examination
• make sure parents or carers are signposted to or given STFYAYB translations or STFYAYB easy guides as appropriate
• make sure parents or carers are offered NIPE screening for their babies
• maintain clear and accurate records of the offer of screening and the parent or carer decision to accept or decline – this should be recorded on the NIPE national IT system and the personal child health record (PCHR or red book)
• track babies through the pathway, from offer of screening to the end of the pathway or post referral outcome

2. Screening test

These requirements relate to the processes of carrying out the screening test.

Coverage

Providers must have systems in place to:

• make sure that all babies who start the screen complete the testing pathway
• record the offer of screening and subsequent acceptance or decline on the NIPE national IT system and document in the personal child health record (PCHR or ‘red book’)
• direct parents or carers who decline the screen to the milestone checks in the PCHR
• return the data for the coverage standard NIPE-S01 (KPI NP1)

Completing the screening pathway remains the responsibility of the birth unit provider unless the baby moves area before the pathway is completed and responsibility is formally passed to another maternity service or primary care unit. The provider will ensure that this is managed by using the NIPE national IT system and any other communications locally agreed.

Carrying out the screening test

Providers must have systems in place to:

• make sure the NIPE practitioner checks the parent or carer understands the NIPE newborn screening examination as part of the pre-screening discussion
• make sure an interpreter is available as required
• complete the NIPE newborn examination, ideally within 72 hours of age – in line with national guidance, screening may be delayed if a baby is ‘too young’ or ‘too ill’ (see ‘3.1 NIPE newborn screening examination’ in Newborn and infant physical examination (NIPE) screening programme handbook)
• make sure that babies who are ‘too young’ or ‘too ill’ for NIPE screening have it completed as soon as they are old enough or well enough
• complete the NIPE newborn screening examination before discharge from hospital, where possible (unless birth happens at home)
• make sure local feedback mechanisms are in place so screening results from newborn screening examinations that have taken place in primary care can be entered promptly on the NIPE national IT system
• make sure there is a process in place to screen babies who move in or out of the area
• have systems in place to identify any deceased baby and to inform other relevant screening and clinical services without delay
• complete NIPE newborn screening examinations which are overdue (not undertaken within 72 hours of age) as soon as possible after this time (see ‘7. Babies who have missed screening’ in Newborn and infant physical examination (NIPE) screening programme handbook)
• complete NIPE infant screening examinations which are overdue (not undertaken by 6 to 8 weeks of age) as soon as possible after this time
• follow up any eligible babies who are not brought to screening or referral appointments in line with local did not attend (DNA)/was not brought (WNB) policy
• inform parents or carers of all screening results
• record NIPE newborn screening results on the NIPE national IT system in the PCHR/red book and in any local records
• have one or more named individuals (who may be the clinical lead, or designated NIPE lead) responsible for the co-ordination of the delivery of the programme
• make sure NIPE practitioners:
  • provide evidence as required that they have accessed and completed appropriate examination of the newborn training (see ‘12. Training and maintenance of competency’ in Newborn and infant physical examination (NIPE) screening programme handbook)
  • maintain continuous professional developmental and undergo an annual competency assessment
  • successfully complete the NIPE e-learning resource annually

Screening outcome and referral

Providers must have systems in place to:

• record every NIPE newborn screening outcome on the NIPE national IT system and document in the PCHR
• share NIPE newborn screening results with the Child Health Information Service (CHIS)
• offer babies who have screen negative results (no abnormalities suspected) on newborn examination the NIPE infant screening at 6 to 8 weeks of age
• follow the appropriate screen positive pathways for eyes, heart, hips or testes for babies who have screen positive newborn results (abnormality suspected)
• share information with primary care (GPs and health visitors), as appropriate
• make sure that parents or carers are informed of all screen positive results and any referral process that may be required, including expected appointment timescales
• record screen positive results and post referral outcomes on the NIPE national IT system and follow up to ensure failsafe and completion of the pathway
• follow the healthy child programme for babies who have screen negative results (no abnormalities suspected) on infant examination
• direct parents or carers of infants discharged from the screening pathway to the healthy child programme milestones

3. After screening test (diagnosis)

These requirements relate to the process of following-up screen positive results to get a confirmed diagnosis.

Providers must have systems in place to:

• refer any babies with screen positive results following the NIPE screen positive pathways and in line with national standards timeframes for the eyes, heart, hips and testes
• follow up babies who are not brought to appointments after a screen positive referral according to local DNA/WNB policy
• monitor local screening activity using data and reports mapped against programme standards, key performance indicators and quality indicators
• follow up screen positive results for babies who transfer between care providers (see ‘5.3 Babies with screen positive results who transfer between care providers’ in Newborn and infant physical examination (NIPE) screening programme handbook)

4. After screening test (diagnosis outcome)

These requirements relate to the process of following-up babies with a confirmed diagnosis.

Treatment

Providers must have systems in place to make sure that all babies who are referred with screen positive results complete the diagnostic testing pathway and are seen in line with the relevant recognised national professional treatment guidelines.

Pathway outcome

Providers must have systems in place to:

• use the NIPE national IT system to record all screening and follow-up data
• regularly check that all screening results are recorded on the NIPE national IT system (in line with national guidance)
• regularly check and follow up all screen positive results and post referral outcomes and record on the NIPE national IT system
• identify and follow up all babies who have not competed the NIPE screening pathway (see ‘7. Babies who have missed screening’ in Newborn and infant physical examination (NIPE) screening programme handbook)
• review local screening outcome and data quality reports to enable surveillance and audit of data quality and completeness
• provide data and reports mapped against programme standards, key performance indicators and quality indicators as required, to monitor all outcomes