Guidance

NBSFS user guide

Updated 8 March 2023

Overview

Please note that quick reference guides with detailed step-by-step actions for system functions are available on the resources section in the newborn blood spot failsafe solution (NBSFS).

Access the NBSFS

The system is only available on an N3 connection (NHS secure). Access the system.

The NBSFS does not work with Internet Explorer (IE) versions older than IE 10. The system also works on the latest versions of Chrome and Firefox.

How it works

The NBSFS is an IT solution for England that reduces the risk of babies missing or having delayed newborn blood spot (NBS) screening. It supports the maternity service responsibility for making sure NBS screening is offered and that samples are taken and received in the laboratory on time.

This is a summary of how the system works (see also diagram below).

  1. The midwife completes the baby’s birth notification and an NHS number is automatically created via the Patient Demographic Service (PDS).
  2. This NHS number and some demographic data entered by the midwife are automatically uploaded from the PDS into the NBSFS database.
  3. A record for the baby is created in the NBSFS. This is allocated to the NBSFS maternity site responsible for screening the baby, based on the mother’s postcode or GP code. For more details see mapping records to NBSFS sites.
  4. The newborn blood spot (NBS) is taken, usually on day 5, and sent to the NBS screening laboratory.
  5. The NBS screening laboratory tests the blood spot card.
  6. The laboratory uploads the outcome – for example, ‘repeat required’ or screening results (not suspected, suspected) – into the NBSFS.
  7. On day 12 of age, records flag up amber on the NBSFS tracking page of the relevant NBSFS maternity site if no NBS card has been received for a record, or if a repeat is required. Each maternity site has designated users who log into the system each working day to check if there are any babies flagged on their site. The maternity site makes sure records which appear on the tracking page are followed up.
  8. On day 17 of age, records are displayed in red if they are still flagged.

Please note that:

  • the NBSFS can be used to identify babies with a ‘repeat required’ status but must not replace existing processes for communicating repeat requests or results
  • data in the NBSFS should not be used as the primary source of data to populate the child health record or to give results to parents
  • child health information services (CHIS) remain responsible for ensuring NBS screening coverage

NBSFS data sources

Demographic details

The demographic data in the NBSFS originates from the data provided when the NHS number is generated soon after birth, normally by the labour ward midwife.

Users can amend or update the demographic details. This will not update the PDS record (the ‘spine’), S4N (screening for newborn infant physical examination) or S4H (screening for hearing) IT systems.

Users can print barcode labels in the demographic details section.

Results

The screening laboratories upload the screening outcome to the results section in NBSFS.

Notes

Any user can add notes to a baby’s record on NBSFS.

The system will automatically add notes, for example, when a record is transferred to another site by a user. A list of automatic notes is available.

To identify the user who added a note, hover the cursor over the user ID and their details will be shown.

Operational level agreements

NBS screening providers and other stakeholders must use the NBSFS. This is mandated in the service specifications.

Operational level agreements (OLAs) describe how Child Health Record Departments (CHRDs), laboratories and maternity departments should use the NBSFS and outline the responsibilities of the system provider and the NHS Newborn Blood Spot Screening Programme.

Feedback and change requests

The NBSFS User Group meets 4 times a year and reviews all change requests and suggestions about improvements to the NBSFS.

You can feedback via the NBSFS Customer Portal.

You can also get in touch via the NBSFS helpdesk.

Newborn blood spot failsafe solution helpdesk

Email NBSFS.helpdesk@nhs.net

Phone 0845 070 2778

Always direct urgent feedback or enquiries to the NBSFS helpdesk.

When submitting your feedback tell us your:

  • name
  • email address
  • telephone number
  • role (for example, lab technician, screening coordinator)
  • hospital/CHRD
  • trust (if relevant)
  • suggestion or comment about NBSFS
  • preference whether you would you like a response to your feedback

CHRD users

These users have ‘CHRD access’ to the NBSFS and include Child Health Information Service (CHIS) users.

The NBSFS is a secondary source of NBS screening data for CHRDs and must not be used to populate the child health record or give results to parents. CHRD users can:

  • view the full records on the CHRD user’s site(s)
  • filter records to match their area of responsibility
  • use the national search to locate a record on any other site
  • change the status of a record to deceased
  • add notes to a record

Laboratory users

Guidance for NBSFS laboratory functions is not included in this publication.

Troubleshooting

This section explains what to do if problems occur within the NBSFS. You can contact the NBSFS helpdesk or customer portal. Email the NBSFS helpdesk at NBSFS.helpdesk@nhs.net using the record query form (RQF) if your query is about a record. Ring them if the problem is urgent.

The baby has completed screening but the record remains on the tracking page

Complete the RQF and forward to the relevant NBS screening laboratory or NBSFS helpdesk as instructed on the form.

Records of screened babies can appear or remain on the tracking page for several reasons, for example:

  1. Data provided at birth notification does not match the data on the NBS card. Matching is delayed because the NBSFS system will not automatically match the record and the card. Common data errors include wrong date of birth (DOB) on the NBS card or the mother’s NHS number appearing on the NBS card instead of the baby’s.
  2. The laboratory has tested the NBS card but has not uploaded the record into the NBSFS. Occasionally the laboratory upload is delayed, for example, if emergency situations or technical problems occur. The date and time of the most recent laboratory upload for the site’s primary laboratory is displayed on the tracking page.
  3. The laboratory has unsuccessfully tried to upload the card details to the NBSFS database. Occasionally files contain errors and the record is not successfully uploaded.
  4. A technical error may have occurred within the NBSFS system. If this happens, a message will appear on the log-in page.

‘Test patient’ on tracking page

‘Test patient’ records can appear if there has been a local IT system test or change, or testing in the PDS by NHS Digital. These records are clearly identified, usually as ‘XXTestPatientXX’. To remove ‘test patient’ records complete the RQF and forward to the NBSFS helpdesk as instructed on the form.

Record for an older baby appears unexpectedly on tracking page

Outstanding records normally appear on the tracking page on day 12. Records for older babies, which were not previously on the tracking page, can appear in the following circumstances:

Transferred from another NBSFS site

The record may have been transferred from another site. If so, the transfer icon will be highlighted. The originating site may have added a note to the ‘notes’ section of the record.

Accept or reject the transfer as appropriate (for more information see operational level agreements and the quick reference guide).

Transferred by the system provider

A record may be transferred in by the system provider. This occurs when a record cannot automatically be placed – for example if the postcode, GP code and hospital of birth entered into the PDS are all incorrect.

The transfer icon will be highlighted and there will be an explanatory note in the ‘notes’ section of the record.

Accept or reject the transfer as appropriate. For more information see operational level agreements and the quick reference guide.

Wrong date of birth (DOB)

If the DOB is wrong on the baby’s record in NBSFS, users can correct it by editing the record.

Also email the NBSFS helpdesk at NBSFS.helpdesk@nhs.net so the system provider can check for any previously uploaded sample cards which can be matched with the updated baby’s record.

Change to screening status

If a change to a baby’s record status in NBSFS is made after day 12 and the updated status now indicates that screening is not complete then the record will appear on the tracking page. This could happen if, for example, the laboratory was subsequently given new information about transfusion status or gestational age which invalidated the initial result.

Check the results section and the notes page of the record which may give updates on the status of the record.

Other

If none of the above applies and you are certain that the record has suddenly appeared, complete the RQF and forward to the NBSFS helpdesk as instructed on the form.

Duplicate record

Complete the RQF and forward to the relevant NBS screening lab or NBSFS helpdesk as instructed on the form.

A record is on the wrong NBSFS site

The record should appear on the site responsible for screening the baby, usually based on the postcode or GP code of the mother’s address. Records may appear on the wrong site for the following reasons.

The mother and baby have moved

Maternity users can transfer records. If the baby has temporarily moved to a different location during the screening period, enter the temporary address in the relevant section, then transfer the record to the site responsible for screening, adding an explanatory note into the ‘notes’ section of the record (see operational level agreements and the quick reference guide).

If the baby has moved permanently to a different address, update the demographic details and transfer the record to the site responsible for screening, adding an explanatory note into the ‘notes’ section of the record (see operational level agreements and the quick reference guide).

An NBSFS map shows the location of maternity hospitals and their associated NBSFS sites.

A list of postcodes and GP codes and the associated NBSFS sites is also available to help identify where to transfer a record (see operational level agreements and the quick reference guide).

Record has been incorrectly mapped

If a record has been wrongly allocated to your site (if the postcode or GP code has been incorrectly mapped to your NBSFS site) then maternity users should transfer the record to the correct site (see operational level agreements and the quick reference guide). You should then inform the NBSFS helpdesk using the RQF.

Shared postcodes

Usually, only the first part of the postcode is used for mapping: for example HA4 or NW14. If this part of the postcode is shared between more than one site then the record is mapped to the NBSFS site associated with the hospital of birth. This could result in records being wrongly mapped. A request can be made via the NBSFS helpdesk to have the full postcode mapped if this is a recurrent problem.

Incorrect repeat request or result

Complete the RQF and forward to the NBS laboratory or NBSFS helpdesk as directed on the form.

Wrong failsafe status

Maternity users can change a baby’s failsafe status (see operational level agreements and the quick reference guide).

If you cannot change the failsafe status to the appropriate status please complete the RQF as directed and forward to the NBSFS helpdesk.

Demographic or data errors

If details have changed since birth

Maternity users can update demographic information (see operational level agreements and the quick reference guide).

You should also complete the RQF, selecting ‘record has demographic or data errors’ and adding the details in the ‘additional notes’ section. Forward to the NBSFS helpdesk as instructed on the form so the system provider can check for any previously uploaded sample cards which can be matched with the updated baby’s record.

If demographic or data errors were made when the NHS number was generated

Changes must be updated on the NBSFS, even if updates have been made on the maternity IT system or PDS. This is because corrections made to maternity IT systems or PDS do not update the NBSFS.

Maternity users can make simple demographic changes to a single record. More complex cases need to be referred to the NBSFS helpdesk using the RQF.

Example: demographic changes to a single record

Maternity users can update and correct demographic information such as NHS number, name, date of birth, gender and address (see operational level agreements and the quick reference guide). Be particularly careful if changing the NHS number. Changes required to an NHS number tend to be more complex.

Whenever demographic details have been changed, please complete the RQF, selecting ‘record has demographic or data errors’ and add the details in the ‘additional notes’ section. Forward to the NBSFS helpdesk as instructed on the form in order for the system provider to check for any previously uploaded sample cards which can be matched with the updated baby’s record.

Any changes made on NBSFS will not update the PDS.

Example: removing a record from the NBSFS

You must remove records from NBSFS when they were created in error, accidentally merged or are duplicates.

Complete the RQF, selecting ‘duplicate record’ or ‘other’ as appropriate, and adding clear notes in the ‘additional notes’ section. Forward to the relevant NBS screening lab or NBSFS helpdesk as instructed on the form.

If a new NHS number is created for a baby, it is essential to check that the new record has been entered into the NBSFS. Use the ‘national search’ function, enter the NHS number and search for the record. If the record does not appear, complete the RQF, selecting ‘record missing’ and adding explanatory notes in the ‘additional notes’ section. Forward to the NBSFS helpdesk as instructed on the form.

Removed records are securely stored using an auditable process.

If a baby dies

A record for a deceased baby is on the tracking page

Maternity and CHRD users can update the record to ‘deceased’ (see operational level agreements and the quick reference guide). To avoid delay, this should normally be done by whichever NBSFS user receives the information first.

Updating the NBSFS record when a baby has died

If NBS screening has not been completed for the deceased baby, the NBSFS must be updated without delay to minimise the risk of inappropriate contact being made with the family (see operational level agreements and the quick reference guide). Maternity and CHRD users can update the record and, to avoid delay, it should normally be done by whichever NBSFS user receives the information first.

All providers, such as maternity units and neonatal units, which have a deceased baby checklist or protocol, should include an action to notify the appropriate NBSFS user of the death so that the NBSFS record can be updated.

Updating the NBSFS does not replace other forms of communication relating to a deceased baby. Local processes should be followed as usual.

If NBS screening is complete, it is not necessary to update the record to ‘deceased’ status when a baby dies, but you can do so if you wish.

Babies who died soon after birth and still-born babies

NBSFS does not receive data about babies who are still-born. In addition, if a baby dies before the midwife generates an NHS number, and this is indicated on the birth notification, then details will not be uploaded to the NBSFS.

When a record cannot be located

Records can normally be located from within the user’s own site or using the ‘national search’ option (see operational level agreements and the quick reference guide).

Babies born in England or Isle of Man (IOM)

If records cannot be located using the national search, complete the RQF, selecting ‘Record cannot be located’ and forward to the NBSFS helpdesk.

Babies born in Wales

The system identifies babies born in Wales to English residents on the Welsh failsafe site and creates a record for them in NBSFS. The GP code and post code are used to map the record to an NBSFS maternity site. If this is unsuccessful, a manual process will be used. If a record is incorrectly matched to a site, it can be transferred out. The ‘national search’ option can be used to find a missing record.

More information about Welsh babies is available on the NBSFS system.

Babies born outside England, Isle of Man and Wales

A record for a baby born outside England, Isle of Man and Wales can be added to the NBSFS on request. This is not normally done but might be advisable, for example, if an unscreened baby in midwifery care has moved to England or Isle of Man. This would ensure the baby is tracked on NBSFS in the same way as a baby born in England.

Complete the RQF, selecting ‘record missing’, and add explanatory notes in the ‘additional notes’ section. Forward to the NBSFS helpdesk as instructed on the form.

See more details on NBS screening of babies with no available records.

Baby resident/screened in Wales

If the baby was born in England but is the screening responsibility of Wales (temporarily or permanently resident in Wales), or was screened in Wales, transfer the record to the ‘Wales’ site. For more information, see operational level agreements and the quick reference guide in the resources section of the system.

More information about NBS failsafe processes between Wales and England is available on the NBSFS system.

Placing a record ‘out of England’

The ‘out of England’ status is only for records of babies who have been confirmed as no longer the responsibility of the English screening programme or IOM. This is babies who:

  • are resident in Scotland
  • are resident in Northern Ireland
  • are resident in the Channel Isles
  • have moved to another non-UK country
  • are the responsibility of United States Air Force (USAF) Lakenheath

Do not use the ‘out of England’ status for any other reasons. Records marked as ‘out of England’ do not flag up on the NBSFS (even if screening is not complete) although they can still be located using the search functions.

Baby resident/screened in Scotland

If the baby was born in England but is the screening responsibility of Scotland, update the record status to the ‘out of England – Scotland’.

The record will no longer be followed up in the NBSFS so records must only be set to ‘out of England – Scotland’ status if the baby is being screened in Scotland.

We cannot transfer records to an NBSFS site in Scotland in the same way as we do for Wales as there is no electronic failsafe system in Scotland.

More information about NBS failsafe processes between Scotland and England is available on the NBSFS system.

Baby resident in England but screened elsewhere

See the guidance for Wales and Scotland.

For babies born in England and screened elsewhere, refer to NBS guidelines to see if they should be offered screening in England:

If they are not eligible for screening or do not require screening, complete the RQF as indicated and submit it to the NBSFS helpdesk.

Otherwise, screening should be offered, as indicated in the guidelines, and the record should remain on the NBSFS tracking page until there is a screening result. Explanatory notes should be added to the ‘notes’ section of the baby’s record.

Baby is in hospital

In a maternity hospital or neonatal unit attached to a maternity hospital

The maternity hospital or neonatal unit can transfer the record into their own site (see operational level agreements and the quick reference guide).

The record should be transferred to the relevant maternity hospital NBSFS site if it flags up on the tracking page of the home site (for more information see operational level agreements and the quick reference guide).

In a paediatric hospital or children’s ward

Most paediatric centres are not set up as sites on NBSFS and the record should remain on the maternity site until screening is complete. If there are problems following up babies in paediatric care, please seek advice from your regional SQAS team.

Care by a private or independent midwife

Some private hospitals are set up as NBSFS sites, for example Portland hospital. Their service will appear in the transfer drop-down list and the record should be transferred.

Most private or independent midwives do not use the NBSFS, but babies in their care are entitled to be covered by the NBSFS. The record will remain on the NBSFS site (as defined by GP and post code mapping) and be visible until screening is complete. If there are problems following up babies cared for by a private or independent midwife, please seek advice from your regional SQAS team.

New users and training

Registering new users

Site leads can add and manage site users locally through the NBSFS. If a new site lead needs access to NBSFS, they should complete and email the new user form to NBSFS helpdesk.

Training materials for new users

Local arrangements should be made for training new users. Training films are available. External training is not usually necessary but can be arranged via the NBSFS helpdesk.

Administration queries

Problems accessing the NBSFS

Forgotten password: there is a ‘forgotten password’ link on the login page of NBSFS.

Password reactivation: accounts are deactivated if not used for 90 days. To reactivate an account, contact the NBSFS helpdesk.

For other access problems contact the NBSFS helpdesk.

Accounts are deleted if not used for 12 months.

What to do if NBSFS is unavailable

The screening provider should contact their IT department to find out if it is a local issue. If there are no local issues, users should inform NBSFS.helpdesk@nhs.net.

If NBSFS is unavailable, maternity users should:

  • maintain a list of births and NHS numbers using information from the birth register in maternity (include home births, neonatal unit admissions and use any other information such as bed status lists to make sure a baby is not missed)
  • inform neighbouring trusts about transfers of babies by communication routes other than NBSFS
  • screen as usual within expected timescales

Note that the above also applies if NBSFS is available but no new birth records are appearing. Check with the local IT department to find out if it is a local issue. If the problem is not local, contact the NBSFS.helpdesk@nhs.net and report the problem without delay.

If NBSFS is unavailable, laboratory users should be aware that:

  • demographic data may not be available
  • upload of results to NBSFS might be delayed

When the NBSFS system becomes available again, maternity users should:

  • check that babies from the collated list are appearing on NBSFS
  • check that these babies eventually have results on NBSFS
  • ensure transfers are actioned
  • if babies are missing from NBSFS or details are incorrect, contact NBSFS.helpdesk@nhs.net

When the NBSFS system becomes available again, laboratory users should:

  • check they are receiving demographic data
  • check results have been uploaded to failsafe
  • liaise with the NBSFS helpdesk to identify any batches of results that have failed to upload
  • for any re-uploads, ensure the uploads are done in the correct order to avoid further issues
  • if there are any issues contact NBSFS.helpdesk@nhs.net

A NBSFS user is changing role or no longer requires access

The NBSFS helpdesk should be informed of a site lead change, preferably in advance by the existing site lead changing role.

If a user no longer requires access to NBSFS, the NBSFS helpdesk must be contacted to deactivate their account. A successor must be appointed to take on NBSFS responsibilities.

Record query form (RQF) guide

When to use the RQF

The RQF is used for queries such as:

  • record on the tracking page when a BS sample has been taken
  • error in a NBSFS record
  • record has been assigned to the wrong site
  • NBSFS record cannot be found

The RQF should not be used for:

  • administration enquiries such as password queries, new user requests
  • training queries such as help using the system
  • technical problems such as the system not operating correctly – contact the NBSFS helpdesk instead
  • urgent issues such as an issue which may have a direct and immediate effect on patient safety or care – contact the NBSFS helpdesk instead

Maintaining confidentiality

Always send the RQF via secure nhs.net email (sender and recipient) to protect patient identifiable information.

Avoid giving sensitive or clinical details unless essential.

State the helpdesk reference number in subsequent emails to avoid using identifiable data.

Do not forward the RQF on to others and avoid copying others into emails, so that patient identifiable information is not inadvertently shared.

The confidential identifier can be used if a non-secure email address has to be used. To see the confidential identifier, hover the cursor over the baby’s first name on the NBSFS tracking page. To copy and paste the confidential identifier, open the baby’s details and click on the notepad icon in the top right hand corner. Do not add any other identifying details.

When a query involves more than one record

If a query involves more than one record, only use one RQF. For example:

  • records which have become mixed up, for example, twins records muddled, 2 babies with one NHS number, duplicate records
  • several records on the tracking page with a probable common underlying cause

Include all the affected NHS numbers in ‘Baby NHS Number’ section, separated by a comma but do not complete the DOB and surname sections.

Give the details of the query clearly in the ‘Additional Notes’ section.

In some circumstances it is not possible or necessary to list every NHS number involved. Discretion can be applied but communication must be clear.

Where to send the RQF

When the ‘enquiry reason’ is selected from the drop-down list, the ‘action to be taken’ will appear below. This indicates whether to forward the RQF to the screening laboratory, to the NBSFS helpdesk or whether the query can be resolved by the user.

Remember to maintain confidentiality when sending the RQF.

Is the RQF compulsory?

The RQF is not mandatory but using it:

  • ensures that the necessary information is provided and correct actions are taken to speed up a response
  • helps the helpdesk to prioritise and respond to queries consistently
  • allows the NBS laboratories to respond to queries efficiently
  • provides an audit trail which cannot be captured by ad hoc phone calls

The NBSFS helpdesk will continue to respond to queries made by email or phone.

What to do if the query is unresolved

If queries are not resolved the escalation process can be found in the operational level agreements.

NBSFS site restructure

If a site is planning an organisational restructure, for example a merger, please inform the NBSFS helpdesk as early as possible so the required changes in NBSFS can be made in time. Please follow the trust merger guidance.

Reports

Maternity site leads will receive weekly NBSFS reports (see section 1.16 of the maternity operational level agreement). The Screening Quality Assurance Service (SQAS) team may contact maternity sites regarding babies flagged on these reports.

Contacts

NBSFS helpdesk

Newborn blood spot failsafe solution helpdesk

Email NBSFS.helpdesk@nhs.net

Phone 0845 070 2778

NBS screening laboratories contact details

Screening laboratories contact details are available on the UK Newborn Screening Laboratory Network.

SQAS regional team contacts

Contact SQAS teams in:

NHS screening helpdesk

Contact the NHS screening helpdesk with any screening queries not related to NBSFS.