Midwives, primary care nurses, specialist midwives, specialist screening practitioners, GPs
STEP 1
Identifying individuals for screening
Competencies
A. Assesses eligibility for carrier screening using family origin, clinical history and UK guidelines, while prioritising the pregnant woman first. Uses the family origin questionnaire where appropriate. (P, A)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- National Institute for Health and Care Excellence: What is the national screening programme for sickle cell disorders?
- NHS England:
- Antenatal screening
- Sickle cell and thalassaemia (SCT) screening: programme overview (see section ‘Target population’)
B. Offers screening early on in pregnancy (before 10 weeks), recognising that not all pregnant women will know or be in a partnership with the fetus’s biological father, and that he may be unavailable, unwilling to be tested or located outside of the UK. (P, K)
Associated learning:
Workforce groups
STEP 2
Provides information on testing
Competencies
A. Explains the purpose of carrier screening and potential outcomes, including the chance of passing a pathogenic variant to the baby, and that initial testing will be done on the pregnant woman, followed by the fetus’s biological father should the pregnant woman have sickle cell trait. (St, K)
Associated learning:
B. Describes the blood test procedure and its timing within pregnancy, and clarifies limitations if the fetus’s biological father is unavailable or unwilling to be tested. (St, K, S)
Associated learning:
C. Discusses the inheritance patterns and reproductive implications if both parents are carriers, acknowledging the potential for non-paternity. (G, K)
Associated learning:
- e-Learning for Healthcare: Sickle Cell and Thalassaemia Screening e-learning module
- NHS England:
- NHS England’s Genomics Education Programme: GeNotes: Visual communication aid: Autosomal recessive inheritance
- NHS Health A to Z: Carriers (sickle cell disease)
D. Recognises the importance of testing the fetus’s biological father and that retesting may be appropriate in cases of missing or overseas results, supporting individuals sensitively through the process. (St, K, A)
Associated learning:
- NHS England:
- SCT screening: handbook for antenatal laboratories
- Sickle cell and thalassaemia: screening handbook (see section 14, ‘Screening the baby’s biological father’)
E. Establishes the pregnant woman’s and/or the couple’s existing knowledge of sickle cell trait and can identify any myths or misconceptions that need to be addressed. (St, K)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- Core training typically obtained as part of the professional skill set
F. Directs the expectant parent(s) to culturally appropriate resources and support groups. (St, S)
Associated learning:
- Antenatal Results & Choices
- Sickle Cell Society: Screening for Sickle Cell and Thalassaemia
G. Explains that the chance of having a child with SCD or a haemoglobinopathy depends on the carrier statuses of both of the fetus’s biological parents. (St, K)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- NHS England:
- Antenatal screening (see section 14, ‘Screening the baby’s biological father’)
- Sickle cell and thalassaemia: screening handbook
Workforce groups
Midwives, primary care nurses, primary care physicians
STEP 3
Consent and counselling before screening
Competencies
A. Ensures that the expectant parent(s) understand the voluntary nature of testing and reproductive implications. (G, K, S)
Associated learning:
B. Discusses potential outcomes and the possible need for testing of the fetus’s biological father. (P, K, S)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- NHS England:
- Antenatal screening (see section 14, ‘Screening the baby’s biological father’)
- Interpretation and reporting of antenatal screening results
C. Adapts communication practice to meet the needs of the expectant parent(s), such as using interpreters, visual aids or support materials. (St, S)
Associated learning:
- Gov.uk: SCT counselling knowledge and skills guide
- NHS England:
- Counselling and referral for prenatal diagnosis (PND)
- Screening tests for you and your baby (see section ‘Details’ for translated information)
- Screening tests for you and your baby: easy guides (see guide ‘Screening for sickle cell disease and thalassaemia’)
- Sickle cell and thalassaemia: screening handbook
- patient.info: Genetic counselling
D. Ensures informed consent and accurately documents decisions. (St, S)
Associated learning:
- National Institute for Health and Care Excellence: Antenatal care
- NHS England: Sickle cell and thalassaemia: screening handbook
Workforce groups
Midwives, primary care nurses, specialist screening practitioners
STEP 4
Requesting testing
Competencies
A. Ensures testing includes relevant haemoglobin genes, guided by the family origin questionnaire, and follows national guidelines. (St, K)
Associated learning:
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- NHS England:
- Antenatal screening (see section 14, ‘Screening the baby’s biological father’)
- SCT screening: handbook for antenatal laboratories
- Sickle cell and thalassaemia: screening handbook
- NHS England’s Genomics Education Programme: GeNotes: Sickle cell disease
B. Uses the family origin questionnaire to support accurate completion of referral and test-request forms. (P, K)
Associated learning:
- Please refer to local protocols and guidelines
- e-Learning for Healthcare: Unit 8 Communicating and responding to screening results
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- NHS England:
- NHS England: Screening in pregnancy: information leaflets (the below are relevant to sickle cell trait):
Workforce groups
Laboratory technicians, midwives, primary care nurses, specialist screening practitioners, sickle cell specialist nurses
STEP 5
Conducting the screening test
Competencies
A. Follows local and national guidelines for sample collection and handling. (P, K)
Associated learning:
B. Records consent and sample details in maternity records. (P, S)
Associated learning:
- NHS England: Sickle cell and thalassaemia: screening handbook
C. Maintains confidentiality and data protection. (St, S, A)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- NHS England: Protecting patient data
Workforce groups
Midwives, primary care nurses, specialist screening practitioners
Step 6
Communicating screening results and next steps
Competencies
A. Communicates results sensitively and promptly. (St, S, A)
Associated learning:
B. If the mother is a carrier, offers testing of the fetus’ biological father and explains the next steps. (St, K)
Associated learning:
- NHS England:
- Antenatal screening (see section 14, ‘Screening the baby’s biological father’)
- SCT screening: handbook for antenatal laboratories
- Sickle cell and thalassaemia: screening handbook
C. If both of the fetus’s biological parents are carriers, discusses reproductive options, such as chorionic villus sampling or amniocentesis. (St, K)
Associated learning:
- Antenatal Results & Choices
- NHS England: Screening in pregnancy: CVS and amniocentesis information for parents
- NHS Health A to Z: Carriers (sickle cell disease)
Workforce groups
Midwives, primary care nurses, primary care physicians
STEP 7
Post-screening support and education
Competencies
A. Reinforces understanding of what sickle cell trait is and its reproductive implications. (St, K)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- NHS England: Sickle cell and thalassaemia: screening handbook
- NHS England: Screening in pregnancy: information leaflets (the below are relevant to sickle cell trait):
- NHS Health A to Z: Carriers (sickle cell disease)
B. Discusses benefits of sickle cell testing with the partner and family where relevant. (St, S)
Associated learning:
- NHS England: Antenatal screening (see section 14, ‘Screening the baby’s biological father’)
- NHS England: Screening in pregnancy: information leaflets (the below are relevant to sickle cell trait):
C. Offers access to genetic counselling and emotional support. (St, K)
Associated learning:
- NHS England: Screening in pregnancy: information leaflets (the below are relevant to sickle cell trait):
- NHS Health A to Z: Carriers (sickle cell disease)
- patient.info: Genetic counselling
Workforce groups
Midwives, primary care nurses, primary care physicians
Step 8
Documentation and healthcare integration
Competencies
A. Ensures that carrier screening results are documented in both the pregnant woman’s maternity/antenatal notes and primary care records, clearly recording the carrier status. (P, S)
Associated learning:
- NHS England: Sickle cell and thalassaemia: screening handbook
- NHS England’s Genomics Education Programme: GeNotes: Consent conversation for genomic testing
B. Conducts audits and applies findings to improve screening uptake and quality. (P, K, S)
Associated learning:
Workforce groups
Midwives, primary care nurses, specialist screening practitioners
All steps
Fundamental principles relevant to all steps
Competencies
A. Provides accurate and evidence-based information on sickle cell trait. (G, S)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- NHS England: Sickle cell and thalassaemia: screening handbook
- NHS Health A to Z: Carriers (sickle cell disease)
B. Recognises when to refer individuals to genetic specialists. (P, A)
Associated learning:
- patient.info: Genetic counselling
C. Uses culturally sensitive communication techniques. (St, K, A)
Associated learning:
- Antenatal Results & Choices
- General Medical Council: Decision making and consent
- Office for Health Improvement and Disparities: Culture, spirituality and religion: migrant health guide
D. Maintains confidentiality and accurate documentation. (P, S)
Associated learning:
E. Offers ongoing support and follow-up care. (St, K, S)
Associated learning:
Support Groups
- Sickle Cell Society
- West London Haemoglobinopathy Coordinating Centre: Patient Public Voice Group
Workforce groups
All roles and professions
Optional step
Optional: Long-term follow-up and education
Competencies
A. Provides information on inheritance risk for future pregnancies. (St, S)
Associated learning:
- Healthy Children: Sickle Cell Trait: Parent FAQs
- Nemours KidsHealth: Sickle Cell Trait (for parents)
- UpToDate: Sickle cell trait (subscription required)
B. Offers access to mental health support and community resources. (St, S, A)
Associated learning:
- De Montfort University: Resources for Schools and Parents
- Healthy Children: Sickle Cell Trait: Parent FAQs
- Nemours KidsHealth: Sickle Cell Trait (for parents)
- UpToDate: Sickle cell trait (subscription required)
C. If a woman known to have sickle cell trait becomes pregnant through a new partner, offers screening to that partner at an early stage in the pregnancy. (St, K)
Associated learning:
- Sickle Cell Society: Helpline
Workforce groups
Laboratory technicians, midwives, primary and secondary care physicians, primary and secondary care nurses, health visitors
