National Surveillance of HIV in Pregnancy and Childhood


Pregnancies in HIV-Positive Women

All pregnant women with diagnosed HIV living in the UK should be reported through our active quarterly reporting scheme.

  • Each maternity unit in the UK has a named respondent who is responsible for all reports to the NSHPC.
  • No names are requested or recorded, but reports from different sources are matched by date of birth, location of report and other demographic variables.

Please note: We ask that you continue to return any paper forms (for cases predating the online system) that you currently have or may receive in the near future.

Paper-based maternity reporting ended in Summer 2018 and all information is now collected online.

How to report a pregnancy
  • Each respondent is sent a request to complete the quarterly Green Card via email for reporting all HIV-positive pregnancies (including terminations and miscarriages) first seen in the unit during the previous three months

    • NB: A nil report must be made even if there were no cases during the specified quarter (tick 'none' on the online card and submit)
  • For each reported case, a mauve notification form is generated to be completed by the respondent
  • For pregnancies which are expected to continue to term, the yellow outcome form is generated on date of expected delivery provided on the notification
  • In order to match mothers and children reported through different schemes, we ask you to complete Soundex for all cases on the Green Card or using the Soundex calculator

Please let us know:

  • If you have a pregnancy to notify and are unclear about who is responsible for reporting in your unit
  • If you have taken over from a previous respondent in your unit
  • If you have issues obtaining the information required to complete the forms
  • If you need support using the online reporting system

If you are contacting us regarding a specific case, please remember we do not have patients' names in our database. Useful identifiers to provide are:

  • Our unique mother study number (MSTU) or child study number (CSTU) if allocated
  • Date of birth (mother and/or child) only via telephone or sent to a NHS.net email address
  • Hospital of birth
  • Soundex

For further queries about maternity reporting, please contact Laurette Bukasa at Email: laurette.bukasa@nhs.net 

Breastfeeding enhanced surveillance

BHIVA currently recommends formula-feeding infants born to WLHIV, eliminating postnatal transmission risk; but also states that virologically suppressed treated women with good adherence to antiretroviral therapy (ART) who choose to breastfeed may be clinically supported to do so:  https://www.bhiva.org/pregnancy-guidelines

All cases of planned and/or supported breastfeeding by HIV-diagnosed mothers are included in the NSHPC enhanced data collection. This enhanced surveillance is ongoing and includes all children born from 2012. There are currently no data on breastfeeding among HIV-positive mothers in resource-rich settings. Findings will be used to inform national guidelines and policy.

The enhanced surveillance of breastfeeding cases is supervised by the NSHPC Surveillance Coordinator Kate Francis (kate.francis3@nhs.net).  Maternity and paediatric respondents are contacted for information including all monthly and infant testing for the duration of breastfeeding.

Vertical transmissions enhanced surveillance

All UK-born children identified as being vertically infected are included in the ongoing enhanced surveillance carried out by the NSHPC. The purpose of the enhanced surveillance is to evaluate antenatal screening pathways and the management of women whose infants acquire HIV vertically to contribute to:

  • monitoring and improvement of antenatal HIV screening protocols
  • understanding timing and circumstances of maternal and infant acquisition of infection

Information is collected via telephone interview with all clinicians involved in the care of the mother and child. Findings are fed into an Expert Review Panel who meet on an annual basis to discuss anonymised cases.

The enhanced surveillance of vertical transmissions is supervised by the NSHPC Surveillance Manager, Helen Peters (helen.peters2@nhs.net). Findings to date have been fed into PHE’s IDPS national standards and guidelines, with results published in HIV Medicine https://onlinelibrary.wiley.com/doi/full/10.1111/hiv.12577