Guidance

NBSFS operational level agreements for maternity users

Updated 8 March 2023

The use of the national Newborn Blood Spot Failsafe Solution (NBSFS) is mandated in service specification No. 19, NHS Newborn Blood Spot Screening 2018/19 in sections 2.2, 2.3, 3.6, 3.25, 4.2 and 5.6.

The regular and correct use of NBSFS promotes the achievements of the nationally agreed standards for Newborn Blood Spot Screening, in particular:

• standard 1a: coverage (CCG responsibility at birth)
• standard 2: timely identification of babies with a null or incomplete result recorded on the child health information system
• standard 4: timely sample collection
• standard 5: timely receipt of a sample into the newborn screening laboratory
• standard 6: quality of the blood spot sample
• standard 7a: timely taking of a second blood spot sample for CF screening
• standard 7b: timely taking of a second blood spot sample following a borderline CHT screening
• standard 7c: timely taking of a second blood spot sample for CHT screening for preterm infant
• standard 9: timely processing of CHT and IMD (excluding HCU) screen positive samples
• standard 11: timely entry into clinical care

The NBSFS operational level agreements (OLAs) outline standards for good practice for all users of the NBSFS and are designed to promote the achievement of these objectives.

The NBSFS OLAs are published in separate documents for different groups of users:

• part A: maternity users
• part B: child health record department users
• part C: newborn blood spot (NBS) screening laboratory users

0.1 Terminology

‘Daily’ denotes Monday to Friday, excluding bank holidays.

‘Maternity user’ applies to all users who access the maternity NBSFS including those working in maternity hospitals, community midwifery units, neonatal units and special care baby units.

‘Child Health Record Department (CHRD) user’ applies to all users who access the CHRD NBSFS.

‘Laboratory user’ applies to all users who access the laboratory NBSFS, including clinical scientists and administrators.

1. Maternity Users, including neonatal unit (NNU)/special care baby unit (SCBU)

1.1 OLA A1: daily checking of the NBSFS

Statement: the NBSFS tracking screen must be checked daily to detect in a timely way babies who may have missed screening.

Responsibility of users: the tracking screen must be checked daily as part of the mandatory requirement to use the NBSFS.

Appropriate action must be taken, daily, on records appearing on the tracking screen. For example:

• reading or adding notes
• updating status
• making enquiries
• communicating with members of the midwifery team, CHRD or NBS screening labs

1.2 OLA A2: transfer, and acceptance of transfer, of NBSFS records

Statement: NBSFS records which need transferring to another maternity unit must be transferred and accepted promptly to make sure that babies who may have missed screening can be followed up with minimal delay.

Responsibility of users: records which need to be transferred to another maternity unit on NBSFS must be transferred out as soon as the need to transfer is identified. This should normally be the same day that the record appears on the tracking page.

When a ‘transfer in’ appears on the tracking page, the record must be accepted or rejected as soon as possible. This should normally be the same day that the record appears as a ‘transfer in’ on the tracking page.

When a ‘transfer in’ is rejected, an explanatory note must be added to the notes page.

1.3 OLA A3a: updating the NBSFS status of deceased babies

Statement: the NBSFS status must be updated when a baby dies to avoid inappropriate NBS screening contact with the family.

Responsibility of users: NBSFS records must be updated for unscreened deceased babies to avoid the possibility of a request for a screening test or repeat request appearing on the maternity site tracking page. If newborn screening has been completed it is not necessary to update the NBSFS record, but the user can do so if they wish.

When notified of the death maternity users must locate the baby’s NBSFS record using the search function. The status must then be updated to ‘deceased’, and notes added to indicate the source of the information.

As well as changing the information on the NBSFS system, users should make sure the updated information has been communicated with all other relevant personnel as appropriate, for example, by telephone or email.

Note: where possible, users should encourage local units which manage neonates to make sure that their end-of-life checklist or protocol includes contacting the local NBSFS administrator when a baby dies.

1.4 OLA A3b: confirming deceased status after sample has been received and processed by laboratory

In the rare instance that a blood spot sample is received in the laboratory for a deceased baby, for example the baby died after the date the sample was taken, the laboratory will process the sample and upload results to NBSFS. The deceased baby’s record will appear on the tracking page with the text ‘deceased confirmation required’.

By clicking on ‘deceased confirmation required’, users will be able to confirm the deceased status (by clicking the ‘confirm deceased’ button) or update the status (by clicking the ‘update’ button) and add notes to indicate the source of the information. You may have to contact another maternity provider or CHRD to find out the information you need to confirm the baby’s deceased status. You can use the contacts database under the resources tab on failsafe to retrieve the contacts for other maternity sites or CHRD users when trying to confirm baby’s deceased status. If you require support with this, please contact NBSFS helpdesk.

The NBSFS status must be checked and updated when a baby with a ‘deceased’ status has a sample taken after the date of supposed death to avoid inappropriate contact with the family.

As well as updating the information on the NBSFS system, users should make sure the updated information has been communicated with all other relevant personnel as appropriate.

1.5 OLA A4: updating the NBSFS record of babies living at a different address to the mother (for example in foster care)

Statement: The NBSFS details must be updated when a baby is at a different address to the mother to avoid delays in locating the baby and to avoid inappropriate NBS screening contact with the birth family.

Responsibility of users: as soon as possible after being notified that the mother and baby are at different addresses, the maternity user must update the NBSFS system using the ‘discharge/latest baby address’ field, confirming that the mother and baby are at different locations and adding relevant notes.

As well as changing the information on the NBSFS system, users should make sure the updated information has been communicated with all other relevant personnel as appropriate, for example by telephone or email.

1.6 OLA A5: managing status and demographic changes on NBSFS

Statement: the NBSFS record should be updated when status and demographic changes are identified to ensure records are current and accurate.

Responsibility of users: the following changes should be made to records for babies who have not completed NBS screening, as soon as possible, which may be before the records flag up on the tracking page:

• deceased baby (see section OLA A3)
• mother and baby at a different address (see section OLA A4)
• baby’s NHS number or date of birth, and tell the NBSFS helpdesk (see contact details below) as this may affect matching the card with the record

Newborn blood spot failsafe solution helpdesk

Email NBSFS.helpdesk@nhs.net

Phone 0845 070 2778

If newborn screening has been completed it is not necessary to update the NBSFS record, but the user can do so if they wish.

The following changes only need to be made to records which flag up on the NBSFS tracking page, including:

• any other demographic changes for mother or baby including name, address, baby’s birth weight, gestational age or birth order
• any other change of status including NBS screening declined, mother cannot be located, or moved out of England

As well as changing the information on the NBSFS system, users should make sure the updated information has been communicated with all other relevant personnel as appropriate, for example by telephone or email.

1.7 OLA A6: maintaining continuity of service — regular user away

Statement: When the regular user is away, on planned or unplanned leave, a substitute is appointed to take on NBSFS responsibilities.

Responsibility of users: so that the NBSFS is checked daily, there must be cover when the regular user is away, by another authorised and competent NBSFS user. Ideally cover should be planned and handover given, but the user’s manager should be aware of the user’s NBSFS responsibilities and have arrangements in place for a substitute if leave is unplanned.

1.8 OLA A7: maintaining continuity of service for new users

Statement: When the regular user leaves or changes role, a successor is appointed to take on NBSFS responsibilities.

Responsibility of users: the NBSFS site lead should contact the NBSFS helpdesk to terminate the access for the current user and arrange access for the new user. If the user leaving is the NBSFS site lead, the current site lead should, where possible, contact the NBSFS helpdesk with details of the new site lead, prior to their departure.

1.9 OLA A8: management of NBSFS when an unscreened baby exceeds the age for maternity responsibility

Statement: The maternity service is normally responsible for completing NBS screening. There are, however, occasions when health visitors (who do not have access to NBSFS) take over this role. This OLA is intended to explain how to manage NBSFS in this event.

The age at which maternity services are no longer responsible for NBS screening varies from area to area, as does the referral pathway. Note: This OLA does not change existing local policies.

Responsibility of users: the screening midwife or local coordinating officer (LCO) responsible for NBSFS must ensure that the health visitor who is taking over responsibility for the NBS test is aware of the outstanding test, as per local policy. This contact may be made via the CHRD depending on local policy.

The screening midwife or LCO may wish to make the health visitor aware that the record is appearing on the NBSFS tracking page and request that they maintain communication if delays to screening continue.

A note should be made in the ‘notes’ section of the NBSFS regarding the contact with the health visitor, preferably giving reasons for the delay.

No attempt should be made to have the record removed from the tracking page if screening is not completed.

If a record remains for an undue period of time, the matter should be escalated via the CHRD (see OLA A10).

Note: if the mother or carer has declined the test or cannot be contacted/located (in accordance with local policies), the NBS screening laboratory should be contacted to assign the appropriate status code to the record. The NBSFS status can also be updated to reflect this, ensuring that relevant notes are added to the system.

1.10 OLA A9: Reporting problems relating to the NBSFS system

Statement: All problems with the NBSFS must be reported promptly to identify and resolve problems with the NBSFS as quickly as possible.

Examples of system problems include:

• problems accessing NBSFS
• an unexpected number of records appearing on the NBSFS tracking page
• screened baby records appearing on NBSFS page
• sudden appearance of older baby records on the tracking page
• baby records erroneously appearing on the tracking page (having no relation to the user’s maternity unit)

Responsibility of users: Report record problems as soon as they are identified using the record query form (RQF) which is emailed to the NBS laboratory or NBSFS helpdesk (as indicated on the form) email.

For urgent problems, and technical issues, telephone the NBSFS helpdesk.

It is important to report problems, even if local solutions can be arranged, to ensure that all problems are recorded and monitored.

Confidential information must not be given over non secure emails (only nhs.net can be used to send confidential and patient identifiable information such as name and NHS number).

If the problem is not rectified appropriately, escalate the matter using the escalation process (OLA A10).

Screening incidents and serious incidents related to NBSFS should also be reported using the existing incident procedures and the Screening Quality Assurance Service (SQAS) (regions) advised.

1.11 OLA A10: reporting other problems relating to NBSFS, and escalation process

Statement: Problems related to the NBSFS must be followed up promptly to identify and resolve them as quickly as possible. For NBSFS system problems see OLA A9. Examples of other problems include:

• maternity users not transferring or accepting transfers promptly
• labs not uploading results in a timely way
• CHRDs not communicating effectively
• unsatisfactory response to helpdesk enquiries

Responsibility of users - please note that:

• midwife administrators should first contact their NBS screening coordinator for advice
• laboratory administrators should first contact their laboratory director for advice
• minor problems and isolated events should be raised directly with the individuals concerned

Serious, persistent or unresolved problems should be managed using the escalation processes as described below.

1.12 Process for midwifery users

1. Contact screening coordinator of relevant maternity unit.
2. Escalate to midwife clinical manager (for example, matron or head of midwifery).
3. Escalate to, SQAS (regions).
4. Escalate to, NHS Newborn Blood Spot Screening Programme Team via PHE.screeninghelpdesk.nhs.net.

1.13 Process for CHRD users

1. Contact CHRD manager in the relevant CHRD
2. Escalate to, SQAS (regions)
3. Escalate to, NHS Newborn Blood Spot Screening Programme Team via PHE.screeninghelpdesk.nhs.net.

1.14 Process for laboratory users

1. Contact director of newborn screening in the relevant NBS lab
2. Escalate to, SQAS (regions)
3. Escalate to, NHS Newborn Blood Spot Screening Programme Team via PHE.screeninghelpdesk.nhs.net.

1.15 Problems for system provider (Northgate Public Services)

1. Contact NBSFS helpdesk.
2. Escalate to, NHS Newborn Blood Spot Screening Programme Team via PHE.screeninghelpdesk.nhs.net.

1.16 Weekly reports for maternity

The lead person for each maternity site will receive a weekly report which will show the number of baby records:

• that are flagged amber (babies who are 12 days of age or older without an initial sample)
• that are flagged red (babies who are 17 days of age or older without an initial sample)
• that are flagged red and over 22 days of age (this will trigger an alert to regional QA)
• that have no notes (red flagged babies with no notes will trigger an alert to regional QA)
• for whom a repeat sample is required
• that are over 25 days of age and a repeat sample is required (this will trigger an alert to regional QA)
• that are over 40 days of age and a repeat sample is required (this will trigger an alert to regional QA)
• for whom the lab has not received a blood spot card
• that are in a ‘transfer in’ state (system users will need to accept or reject these records that have been transferred in from another maternity site)
• that are in a ‘transfer out’ state (system users, at the site to which these records have be transferred out to, will have to accept or reject these records)

Weekly reports are particularly helpful for identifying trends, for example:

• an increasing trend in avoidable repeats could indicate blood spot quality training needs
• an increasing trend in amber and red flagged records could indicate postal delays and may warrant further investigation to identify where the delays in the sample transport pathway and/or implementing courier or special delivery service over bank holidays periods

2. Responsibility of NBSFS system provider (NEC)

2.1 Statement

A detailed description of the NEC responsibilities is defined in the NBSFS contract, schedule 4, service level agreement (SLA). Contact the newborn blood spot programme team for details..

2.2 Responsibility of system provider (NEC)

Inform users in a timely way if there are system availability or performance problems which may affect users in line with the NEC and the programme’s SLA response and fix times. For example, a delay in the day’s upload of data, or a significant problem which may lead to large numbers of screened infants appearing on the tracking page.

NEC will advise users of the issue by placing advisory information on the NBSFS login page if the following 2 things happen:

• laboratories have not uploaded data or have experienced a large number of errors in the upload
• the laboratory has notified NEC of the issue

They will also:

• process unmatched sample cards and match to appropriate birth records in a timely manner
• provide the users with information about when the daily laboratory upload in their area takes place so that users can select optimal time for using system
• provide data which may be accessed by SQAS and programme team for the purposes of monitoring quality
• ensure training materials are available and up to date
• generate and terminate user accounts in a timely way
• cascade information about significant system problems affecting users, as agreed with the programme team
• respond to enquiries/problems/serious incidents as agreed in the SLA
• respond to complaints as specified in the SLA

3. Responsibility of the NHS Newborn Blood Spot Screening Programme

Statement: The NBSFS is delivered from the NHS Newborn Blood Spot Screening Programme.

Responsibility of NHS Newborn Blood Spot Screening Programme: It is the responsibility of the programme to:

• report to the newborn screening programmes IT Software Delivery Board (or equivalent)
• work with NEC to provide a high quality NBSFS service
• monitor the quality of the service provided by the system provider
• monitor the support provided by the system provider, including the service desk
• hold the system provider to account in line with contractual agreements
• maintain a risk register
• appoint a clinical safety officer to oversee clinical safety
• develop the service in conjunction with the NBSFS user group
• respond to escalated issues
• escalate issues to the relevant antenatal and newborn national screening programmes lead
• ensure training and information resources are available for users of the system
• provide information and updates to users and other stakeholders
• monitor the use of the system and produce reports according to agreed criteria
• make available reports for quality assurance personnel and other stakeholders