NHS Sickle Cell and Thalassaemia Antenatal Screening Programme: checks and audits to improve quality and reduce risks What This is what we recommend you do Why These are the reasons we are recommending this How This is how you do this When This is how often we recommend you undertake the action/check In addition to failsafe Identify the eligible population; have systems in place to: record all pregnant women take the screening test by 10 weeks + 0 days gestation record the screening offer, test or decline in the eligible population in every pregnancy collect data for KPIs ST1 coverage and ST2 timeliness of antenatal screening test To ensure the eligible population are offered screening. Timing is crucial to informed choice; we have evidence that early offer of screening affects the choices people make We have evidence from KPIs and screening safety incidents of: women who are not offered screening unnecessary delays between presenting for maternity care and booking/screening quarterly KPIs do not allow checking in good time Maintain an accurate list of eligible population includes gestation at booking, screening test and decline Weekly Submit data on KPIs ST1 (standard 1: antenatal coverage) and ST2 (standard 2: timeliness of antenatal test) to the NHS screening programmes quarterly Trust response: this row is for you to enter results or summarise whether you have these checks in place. If not, you can use this space to identify gaps and develop an action plan
What This is what we recommend you do Why These are the reasons we are recommending this How This is how you might do this When This is how often we recommend you undertake the action/check In addition to failsafe Provide information and offer screening; have systems in place to: record that each woman is given ‘Screening tests for you and your baby’ To ensure informed choice; we have anecdotal evidence that the limitations of screening are not always communicated and/or understood e.g. screening is not 100%, is not diagnostic Record ‘Screening tests for you and your baby’ given in the maternity notes/system Date ‘Screening tests for you and your baby’ is given to woman Audit that the booklet was given evidenced by records in the maternity notes/system annually response: this row is for you to enter results or summarise whether you have these checks in place. If not, you can use this space to identify gaps and develop an action plan What This is what we recommend you do Why These are the reasons we are recommending this How This is how you might do this When This is how often we recommend you undertake the action/check In addition to failsafe Take sample and send to laboratory with completed family origin questionnaire (FOQ); have systems in place to: identify sample as antenatal in the laboratory access hard copy or electronic FOQ To ensure a fit for purpose sample and completed FOQ arrive at the laboratory We have evidence from KPIs and screening safety incidents that screening is inaccurate, incomplete or delayed because: Record samples and match against the eligible population Weekly Audit of repeat requests and rejected samples annually Submit data on ST3 (standard 3 completion of family origin questionnaire (FOQ)) quarterly
record information on ancestry of biological mother and father or not known collect data for KPIs ST3 completion of FOQ samples are not identified as antenatal in the laboratory samples arrive without an FOQ samples are but do not arrive in the laboratory checks are in place but these are not timely we have evidence of an unexpected affected birth following failure to elicit correct partner/baby’s biological father when completing FOQ avoidable expense and anxiety from partner recall Trust response: this row is for you to enter results or summarise whether you have these checks in place. If not, you can use this space to identify gaps and develop an action plan What This is what we recommend you do Why These are the reasons we are recommending this How This is how you might do this When This is how we recommend you undertake the action/check In addition to failsafe Laboratory tests samples as per national guidelines and reports results as per national format; have systems in place to comply with the programme laboratory handbook To accurately identify women and couples with genotypes specified as requiring further investigation We have evidence of: false negative and false positive cases when the national screening algorithm is not followed misinterpretation of screening results when national reporting format is not used Investigate incidents identified by newborn screening programme e.g. unexpected affected baby Participate in UK national external quality assessment service haematology Contemporaneously Submit data on standard 4: antenatal test turnaround times to NHS SCT national programme annually
This is what we recommend you do This is how often we recommend you undertake the action/check Inconclusive and carrier results and affected mother SCD; have systems in place to ensure: results are documented in the maternity records communicated to women and their healthcare professional provide written information offer of screening to baby's biological father counselling and prenatal diagnosis to women if: baby’s father is not available risk assessment of inconclusive results indicates potential at risk couple match baby’s fathers result with antenatal sample To ensure timely intervention for women/couples ‘at high risk’ of an affected pregnancy we have evidence from screening safety incidents of: biological father not offered screening delayed diagnosis and/or treatment maternal morbidity and mortality in affected mothers unexpected affected births because baby’s biological father was not tested/result not followed up that all women and babies’ biological fathers who want the test are tested; record inconclusive, carrier and affected results and match against the eligible population Weekly Audit that the ‘tests for dads’ and ‘information for couple at risk of a baby with thalassaemia major or sickle cell disease’ were given and recorded in the maternity notes/system annually Trust response: this row is for you to enter results or summarise whether you have these checks in place. If not, you can use this space to identify gaps and develop an action plan What Why These are the reasons we are recommending this How This is how you might do this When This is how often we recommend you In addition to failsafe
What This is what we recommend you do Why These are the reasons we are recommending this How This is how you might do this When This is how often we recommend you undertake the action/check In addition to failsafe Baby affected by a major haemoglobin disorder; have systems in place to: provide information and choice by a trained HCP supported by NHS SCT programmes resources and refer for TOP if requested provide counselling and follow up support record timeliness of offer and tests and results and outcomes on women that have had PND report anonymised pregnancy outcome data on women that have had PND alert newborn screening laboratory record antenatal and PND results on the blood spot card To ensure timely intervention for women/couples ‘at high risk’ of an affected pregnancy We have anecdotal and evidence from screening safety incidents of: delays between decision to accept TOP and accessing TOP which also impacts on choice of method of TOP counselling is not always done well to help interpret the newborn blood spot screening result Check that choices of continuing or terminating the pregnancy have been followed up Weekly Audit of completion of short and long-term pregnancy outcome forms (link) gestation at offer annually of alert forms to NBS laboratory annually Trust response: this row is for you to enter results or summarise whether you have these checks in place. If not, you can use this space to identify gaps and develop an action plan What Why How When In addition to failsafe
This is what we recommend you do These are the reasons we are recommending this This is how you might do this This is how we recommend you undertake the action/check Carrier or normal PND result; have systems in place to: provide counselling and follow up support record timeliness of offer and tests and results and outcomes on women that have had PND report pregnancy outcome data on that have had PND to the PND laboratory alert newborn screening laboratory record antenatal and PND results on the blood spot card The mother’s antenatal screening test and PND results help interpret the newborn spot results Outcome data is essential to evaluate the screening programme, PND laboratories send data to the National Congenital Anomolies & Rare Disorders Registration Service Check that all women and babies’ fathers who want the test are tested Record inconclusive, carrier and affected results and match against the eligible population Weekly Trust response: this row is for you to enter results or summarise whether you have these checks in place. If not, you can use this space to identify gaps and develop an action plan Published 1 March 2017 PHE publications gateway number: 2016644 Revision 1 March 2018