3. Results and records
Updated 3 August 2018
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This publication is available at https://www.gov.uk/government/publications/health-professional-handbook-newborn-blood-spot-screening/3-results-and-records
All parents should receive their baby’s screening results by 6 weeks of birth or notification of movement in.
1. Not suspected results
Parents must receive ‘not suspected’ screening results by 6 weeks. The agreed method for communicating these results is currently to send a letter to parents. This letter should be saved in the baby’s personal child health record (PCHR).
Child health records departments (CHRDs)/child health information services (CHISs) should send normal (not suspected) results letters by:
- 6 weeks of birth (new birth population)
- 6 weeks of notification of movement in (movers in population)
Specific template letters are available for when:
- all screening results are normal
- there is a positive screening result for one condition (other 8 results are normal)
- all screening results are normal but the baby is too old to be screened for cystic fibrosis (CF)
- there are normal results for congenital hypothyroidism (CHT) following a preterm repeat
Where CHRDs/CHISs do not send normal results letters, health visitors must give the results to parents and document this in the PCHR. Screening and immunisation area teams should provide evidence that this happens, for example, though local audit.
It is the health visitor’s responsibility to make sure that parents have received the results by 6 weeks and that these have been recorded in the PCHR.
The sample taker should tell parents to contact their health visitor if they do not receive the results by 6 weeks. It is very important that parents are not told that ‘no news is good news’. It is also important that parents and healthcare professionals understand that screening is not 100% accurate. If parents have any concerns about their baby’s health they should see their GP or health visitor.
Please note that the national programme team does not have access to screening results.
2. Repeat samples
Parents may be anxious if their baby has had a repeat sample as part of the screening pathway.
They can expect to receive the results as soon as they are available. This is usually by 14 days after taking the sample (although every effort must be made to complete the test by 7 days).
It is important that parents or families are reassured about normal results for the other screening tests as soon as possible.
3. Suspected results
Parents will be contacted as soon as possible if their baby has a screen positive result for a condition. This enables them to start treatment as soon as this can be arranged.
In all cases an appropriately trained healthcare professional must give the results to parents (verbally in most circumstances). They should give parents the national parent information leaflet for the particular condition.
The initial clinical referral guidelines for each condition set out the agreed methods and timeframes for contacting parents. These are available in:
- managing positive results from CF screening
- CHT laboratory guide (appendix 1)
- inherited metabolic disease laboratory guide (appendices 2 to 7)
- sickle cell and thalassaemia handbook for newborn laboratories
Healthcare professionals must be sensitive to the possibility of screening results revealing non-paternity. The NHS Sickle cell and Thalassaemia Screening Programme has guidance on raising issues of non-paternity.
4. Carrier results
Parents should also receive carrier results for CF and sickle cell disease (SCD) screening by 6 weeks of birth or notification of movement in. A well informed healthcare professional should give information about carrier results to parents.
The process for reporting CF carrier results is set out in Managing positive results from CF screening.
The SCT programme handbook provides information on reporting SCD carrier results.
5. Child health information systems
Child health information systems (CHISs) are patient administration systems used by Child Health Records Departments (CHRDs). They provide a clinical record for individual children, including NBS screening results. The screening results might be provided by the screening laboratories to CHRDs/CHISs in different formats.
6. Laboratory system
NBS screening results are recorded on the screening laboratory system as part of the testing process. If the sample has been sent to another laboratory to complete the screening test, the result will also be recorded on their system.
7. Newborn blood spot failsafe solution
NBS screening results are recorded on the newborn blood spot failsafe solution (NBSFS). This makes sure that every baby is offered screening and minimises the chance of a baby missing screening.
8. Sickle cell and thalassaemia outcome system
NBS screening results are recorded on the sickle cell and thalassaemia outcome system. This makes sure that babies with sickle cell and thalassaemia access care.