Sickle cell and thalassaemia screening overview
Updated 6 July 2018
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This publication is available at https://www.gov.uk/government/publications/handbook-for-sickle-cell-and-thalassaemia-screening/sickle-cell-and-thalassaemia-screening-programme-handbook-overview
Programme aims
Antenatal screening
We aim to offer timely antenatal sickle cell and thalassaemia (SCT) screening to all women (and couples) to facilitate informed decision-making.
Newborn screening
We aim to achieve the lowest possible childhood death rate and to minimise childhood morbidity from sickle cell disease.
Programme objectives
Our objectives are to:
- ensure a high quality, accessible screening programme throughout England
- support people to make informed choices during pregnancy and ensure timely transition into appropriate follow-up and treatment
- improve infant health through prompt identification of affected babies and timely transition into clinical care
- promote greater understanding and awareness of the conditions and the value of screening
This handbook provides supporting guidance for all healthcare professionals throughout the screening journey.
The content is based on:
- evidence
- healthcare professional enquiries to the programme
- lessons from patient safety incidents
- data collection
- assessment of performance against standards
- evaluation of external SCT courses
- the programme’s e-learning resources
Resources
This handbook is part of a suite of documents that include:
- the service specification which outlines the service and quality indicators expected by NHS England and which meets the policies, recommendations and standards of the NHS Screening Programmes
- the programme standards that explain the standards for monitoring the programme (the generic newborn blood spot screening standards also apply)
- the screening pathway
- antenatal and prenatal diagnosis and newborn laboratory handbooks
- checks and audits to improve quality and reduce risks
The checks and audits are needed at each stage in the screening pathway so individuals move seamlessly and safely through the pathway unless they choose not to. If these checks are not in place, there is a risk that an individual may not complete the pathway or it will be delayed.
The 2 laboratory handbooks set out policies and standards for laboratories and include information on:
- laboratory working standards
- testing algorithms for antenatal screening
- referral guidelines for DNA testing
- risk assessment procedures
- laboratory support services
There are 9 units in the SCT screening e-learning resource.
Each unit can be completed independently. There is an optional quiz to test knowledge with a certificate issued on satisfactory completion. Topics covered are:
- Unit 1: antenatal and newborn screening for sickle cell, thalassaemia and other haemoglobin variants
- Unit 2: understanding haemoglobinopathies
- Unit 3: about sickle cell disease
- Unit 4: about thalassaemia
- Unit 5: informed choice and understanding diverse needs in screening
- Unit 6: understanding the screening test and the family origin questionnaire
- Unit 7: understanding antenatal screening results
- Unit 8: communicating and responding to screening results
- Unit 9: screening the newborn infant
Feedback
To make sure this handbook meets your needs we welcome feedback from everyone who uses it. Please email your comments to phe.screeninghelpdesk@nhs.net.