Guidance

Newborn screening: communication pathways following bereavements

Updated 16 December 2024

Applies to England

This guidance supports newborn screening providers to reduce the risk of bereaved families being contacted about screening and healthcare matters after a baby has died. It is also relevant for anyone involved in notification and communication following the death of a baby. It builds upon guidance available in the national bereavement pathway for a neonatal death and NICE end of life care for infants.

Ensuring that all involved in the care of a baby are aware if the baby has died reduces this risk and prevents additional and avoidable distress.

The guide can be used to:

• learn from other sites
• identify and record good practice
• identify and mitigate issues that risk poor communication or missed notifications

Some aspects of this guidance will not be relevant to some departments involved in the pathway, but 1 issue can affect the entire pathway. All involved have a role in considering how the process could be optimised. Similarly, the different approaches suggested will not work for all screening services and the pathway will need to be adapted to local needs.

1. Communication pathway principles

A successful communication pathway will do the following.

1.1 Outline specific steps

To outline the specific steps involved, it will:

• identify all stakeholders
• make sure a distribution list exists which includes all stakeholders
• define clear roles and responsibilities
• create template communications

1.2 Document

In relation to documentation, it will:

• maintain clear documentation of the pathway
• include the pathway in bereavement checklists
• include the pathway in the end of life pathway
• document what screening happens in the clinical notes and IT system

1.3 Appraise implementation

To demonstrate implementation, it will include:

• a ratified standard operating procedure or other documentation
• a review by leads, managers and steering groups
• regular ongoing review and audit of the pathway

2. Shared learning and potential challenges

2.1 Policy and procedures

Helpful areas of shared learning include:

• clear processes
• clear roles and responsibilities
• standardised practice within locality
• clear documentation (standard operating procedures, protocol, guides)
• detailed description for each step and actions to be completed by each contact including checking for pending referrals or other contacts
• regularly review to check that all contact details are up to date and whether any upgrades to pathway are needed
• clear routes for reporting issues and errors, including awareness of quality assurance reporting route for screening incidents

Potential problems to look out for are:

• uncertainty or lack of clarity
• different processes within different areas of locality
• using absence of incidents as a marker of a sound communication pathway

2.2 Methods of communication

Helpful areas of shared learning include:

• do your action immediately to avoid delays and oversights
• create templates for letters and emails
• create and maintain distribution lists
• send back up notification using different route to first line (which also provides a trail)
• send weekly summaries as well as case by case notification
• check that colleagues in other parts of the pathway have adopted the practice of confirming receipt of communications and any subsequent actions taken
• keep the communication step active on the checklist/system until you receive confirmation
• follow up if not confirmed – if not sure, contact again (would rather hear twice than not at all)
• maintain clear routes for notification of deaths occurring out of hours, including hand-over if notification needs to be done on next working day

Potential problems to look out for are:

• confirmation of communication is not always achieved
• steps dependent on 1 person without any back-up can create risk – if dependence on 1 person is unavoidable, send communication to several members of the department to ensure the message is picked up

2.3 Communication channels and relationships

Helpful areas of shared learning include:

• use shared IT systems or shared access – they can include automatic alerts to make sure other departments are informed of changes quickly, rather than when next logging in to system, so they can take appropriate action sooner
• maintain established processes and relationships
• have a single port of call, with clear and fixed contact details
• consider staff training, including what to do if lead member(s) of staff for notification are unavailable

2.4 Specific elements of care and practice

Helpful areas of shared learning include:

• keep an awareness of local challenges so that local processes reflect local needs (such as large tertiary centres developing special systems for notification of deaths from out of area)
• recheck details, such as hospital numbers

Potential problems to look out for include:

• timing of the baby’s death (consider non-working days)
• babies who die abroad
• babies with complex care, such as early births, risk of poor outcome flags, transfers, intensive care – all used as alerts to double check for bereavement before contacting family
• multiple births
• home births
• inconsistent documentation of stillbirths
• time pressure on wards and staff capacity
• colleagues’ fear of error
• colleagues avoiding discussing issues

3. Describing your communication pathway

To describe your communication pathway, ask yourself:

• who tells you if a baby has died
• how you are told if a baby has died (such as by phone or email)
• when you are told if a baby has died (such as after every alert or only after summary reports)
• whether you amend any systems
• whether you check if the baby is still on a screening pathway
• whether you check for any outstanding communication or actions (such as onward referrals)
• whether you inform other stakeholders of the death of a baby
• what other action you take, if any
• if this process is documented

To identify areas of shared learning, ask yourself:

• what works well in the pathway
• what causes problems and what could cause problems
• what could help with these problems or reduce the risk of problems
• whether there are any specific examples of shared learning or challenges

See the communication pathway principles for reference.

4. Appraising your communication pathway

To appraise your communication pathway, ask yourself:

• whether your pathway follows the communication pathway principles
• which principles it follows
• which principles it does not follow
• whether there are reasons for this difference
• whether any of the elements of shared learning are present in the pathway
• whether any of the potential challenges are present in the pathway
• what actions can be taken to improve the local pathway