Guidance

Newborn blood spot screening: learning from incidents

Updated 19 December 2024

Applies to England

Failsafe processes help to identify screening incidents in real time so that action can be taken before harm occurs.

We know, from reported screening safety incidents, of cases where local screening providers have not checked the status of babies along the screening pathways, or have had unclear processes for communicating the need for sampling when babies are transferred from one care setting to another.

For failsafe processes to be effective, they must be timely.

The following real scenarios illustrate situations where the screening pathway was not delivered as specified. Providers can refer to these scenarios to:

• check their local pathway
• confirm they have failsafe processes in place
• address any gaps that may exist in the pathway

1. Transfer of care

Baby Russell was born at a local maternity unit and admitted to the neonatal unit. His condition deteriorated and he was transferred to a level 3 neonatal unit on the morning of day 5. The staff in the first neonatal unit did not take the newborn blood spot sample, as he was being stabilised. The staff in the receiving unit assumed the blood spot sample had been taken by the first neonatal unit, as it was day 5 when the baby was transferred.

Administrative staff in the receiving unit had responsibility for checking (daily, Monday to Friday) that all inpatients were listed on the newborn blood spot failsafe solution (NBSFS) for their site. The person responsible was on annual leave and no one was allocated responsibility for this task in their place.

The missed screen was identified on day 12, when the baby’s record was displayed on the home screen of the NBSFS of the original unit. The original unit then transferred the baby’s record out to the level 3 unit site and a phonecall was made to alert the receiving unit. A blood spot sample was obtained on day 13. The sample reached the laboratory on day 15 and the result was available on day 16. The baby screened positive for congenital hypothyroidism (CHT). An urgent referral was made to the specialist paediatric team which reviewed the baby on day 17. Diagnostic tests were completed and the baby started treatment on day 18.

Timely entry into clinical care for all screen positive babies is vital to:

• ensure health benefits are achieved
• reduce morbidity and mortality

Standard 11 requires entry into care by day 14 for CHT screen positive babies identified on the first sample.

1.1 Questions for providers

Do you have a systematic process for regular access to, and monitoring of, the NBSFS?

Do you check that each baby in your care has a sample taken on day 5 and that the sample reaches the laboratory?

Do you have processes for checking records on transfer of care to another provider, to make sure responsibility for screening is also transferred?

2. Missed screen

A baby had a newborn blood spot sample taken on day 7. There was insufficient blood on the sample and a repeat sample was taken on day 16. The repeat sample also had insufficient blood. The second repeat request from the laboratory was not followed up until day 53 and the sample repeated on day 60. This delay meant that the sample was too late to be tested for cystic fibrosis as this is not reliable in babies over 8 weeks of age.

Good sampling technique can reduce the need for avoidable repeats because of insufficient samples. If the need for a repeat second sample had been followed up earlier the baby would still have been able to be tested for cystic fibrosis.

2.1 Question for providers

Do you make sure that all babies have a screening result and that repeat sample requests are actioned in a timely way?

3. Result letters to parents

Newborn blood spot screening identified a baby with a suspected CHT result. The baby was seen by the clinical specialist team, the result confirmed, and treatment started. The mother attended a follow-up appointment with the consultant paediatrician. The mother was worried that her baby might be on unnecessary treatment because she had received a results letter stating that all 9 conditions were not suspected. This was investigated and the CHT result was found to be incorrectly recorded as ‘not suspected’ on the child health information system (CHIS). A ‘normal’ results letter had therefore been sent to the parents in error.

3.1 Question for providers

Are checks in place in the CHIS to ensure that the correct results letter is issued for babies with a positive blood spot screening result?

4. Babies who spend time on neonatal units and other paediatric wards

A baby was discharged home but later readmitted to a paediatric ward (on day 4). The paediatric ward did not recognise the need to take the day 5 sample. The baby was discharged from hospital on day 10 without completion of newborn blood spot screening. The community midwife completed screening on day 11.

If the paediatric ward had checked if screening was needed, or if the maternity service had checked the NBSFS, the missed day 5 screen would have been identified earlier.

4.1 Questions for providers

Do you always check that babies on paediatric wards have had a day 5 (or day 8 at the latest) sample taken?

Do you track completion of screening on NBSFS if applicable?

5. Transport

A baby on the special care baby unit had the 28-day CHT newborn blood spot sample taken, but the sample was not received by the laboratory. The NBSFS flagged the baby’s record but staff did not take action, as they believed the sample was in transit. The laboratory contacted the unit and the sample was repeated 9 days later.

5.1 Questions for providers

Do you take action and arrange a repeat sample when it is not received by the laboratory?

What checks do you have in place to make sure that transport delays are acted on and prevented at time of peak activity such as bank holidays?

6. Documentation

A newborn blood spot sample was received in the laboratory with a barcoded NHS number label. It was analysed and reported as all conditions ‘not suspected’. Child health identified that the date of birth on the results was incorrect and informed the laboratory. The baby was too young for screening and a repeat sample was requested.

A baby was discharged from hospital without barcoded NHS number labels. The newborn blood spot sample was taken on day 5 and the blood spot card completed by hand. The baby’s NHS number was incorrectly documented and the sample rejected. A repeat sample was requested by laboratory and taken on day 11.

6.1 Questions for providers

Do you always use the barcoded NHS number label for samples and check that it includes correct details?

Do you always check that the baby is eligible for newborn blood spot screening?

7. Movers in

A baby moves to England from another country at 2 months of age. Despite multiple visits by health professionals to the family the need for newborn blood spot screening was identified but not completed. CHIS was not notified about the child moving in. The baby moved out of the country at 9 months of age, so the chance to offer screening was missed.

7.1 Questions for providers

Do you have local pathways in place for the notification of CHIS for babies that move into your responsible area of care?

Do you check that these babies have been offered timely screening and have a screening result or decline recorded?

8. Audit of the NBS failsafe pathway

In addition to keeping NBSFS up to date and reviewing the nationally provided reports, you can also check your failsafe processes by audit. Examples of audits that you can complete include checking:

• timeliness of communication pathways when a baby dies
• that all babies have a concluded screening result by 17 days of age on NBSFS
• that consent or decline of NBS screening is recorded, including decline for specific conditions (see sampling guidelines)
• that screening information has been provided in a suitable language and format
• that screening results are discussed and that this is documented
• babies that ‘did not attend’ or were ‘not brought’, focusing on health inequalities and checking that your services are meeting the needs of protected groups
• that babies who move in from other countries are offered timely screening