Midwives including specialist midwives, sickle cell specialist midwives and trainee midwives; nurses including NICU nurses, SCBU nurses, sickle cell specialist nurses and nurses in primary care clinics; GPs, doctors, trainee doctors and the wider primary care team; health visitors; and specialist screening practitioners.
STEP 1
Eligibility and risk assessment
Competencies
A. Offers newborn blood spot screening for sickle cell trait to all newborns as part of the national newborn screening programme. (P, K)
Associated learning:
- National Institute for Health and Care Excellence: What is the national screening programme for sickle cell disorders?
- NHS England:
B. Identifies newborns at higher risk of sickle cell trait based on parental ethnicity, family history or known parental carrier status. (P, K)
Associated learning:
- National Institute for Health and Care Excellence: What is the national screening programme for sickle cell disorders?
C. Provides information in culturally appropriate formats, including translated materials where needed. (P, K, S)
Associated learning:
D. Provides the information that if an appointment is missed or consent isn’t given, the eligibility to have newborn screening remains for up to a year since birth. (St, S)
Associated learning:
- e-Learning for Healthcare: Antenatal & Newborn Screening e-learning Module
- NHS England:
- Newborn blood spot screening: programme handbook
- Screening tests for you and your baby: easy guides (see ‘Blood spot tests’)
Workforce groups
STEP 2
Parental information provision
Competencies
A. Explains the difference between SCD and sickle cell trait using clear language and visual aids. (St, K)
Associated learning:
- e-Learning for Healthcare: Antenatal & Newborn Screening e-learning Module
- NHS England: Sickle cell and thalassaemia: screening handbook
- Sickle Cell Society: Screening for Sickle Cell and Thalassaemia
B. Communicates that newborn screening is routinely offered to all babies and includes screening for sickle cell disease. (P, K)
Associated learning:
- NHS Baby: Newborn blood spot test
- NHS England’s Genomics Education Programme: GeNotes: Newborn blood spot screening
- NHS England:
C. Clearly explains the possible screening outcomes, their implications, and any recommended next steps. (St, K)
Associated learning:
-
- e-Learning for Healthcare: Antenatal & Newborn Screening e-learning Module
- NHS Baby: Newborn blood spot test
D. Explains the inheritance pattern and reproductive implications if sickle cell trait is confirmed. (St, K, S)
Associated learning:
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- NHS England’s Genomics Education Programme: GeNotes: Newborn blood spot screening
- NHS Pregnancy: Screening for sickle cell and thalassaemia
E. Can address common misconceptions and barriers to engagement. (St, S, A)
Associated learning:
- Gov.uk: Equitable access to screening: statutory duties under Equality Act (supersedes 2013’s guidance ‘NHS population screening: working with minority or hard to reach groups’, though learners may wish to access it due to presence of relevant learning)
- NHS England: Patient and public participation: equality and health inequalities – full analysis and associated resources (PDF, 31 pages)
F. Ensures the parent(s) understand the voluntary nature of screening and their right to decline. (St, A)
Associated learning:
- General Medical Council: Decision making and consent
- NHS England’s Genomics Education Programme: GeNotes: Consent conversation for genomic testing
- NHS Health A to Z: Consent to treatment
Workforce groups
Midwives including specialist midwives and sickle cell specialist midwives; nurses including NICU nurses, SCBU nurses, sickle cell specialist nurses and nurses in primary care clinics; GPs, doctors, trainee doctors and the wider primary care team; health visitors; and specialist screening practitioners.
STEP 3
Seek consent for testing
Competencies
A. Re-emphasises the importance of the screening and ensures the parent(s) are well-informed to consent. (St, K, S)
Associated learning:
- General Medical Council: Decision making and consent
- NHS England’s Genomics Education Programme: GeNotes: Consent conversation for genomic testing
- NHS Health A to Z: Consent to treatment
B. Discusses privacy and confidentiality of results. (St, S)
Associated learning:
C. Obtains written consent where required and records parental decisions accurately. (P, S)
Associated learning:
- General Medical Council: Decision making and consent
- NHS Health A to Z: Consent to treatment
D. Ensures understanding of the potential implications for extended family members and offers follow-up support if requested. (St, K, S)
Associated learning:
- e-Learning for Healthcare: Antenatal & Newborn Screening e-learning Module
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- NHS England’s Genomics Education Programme: GeNotes: Newborn blood spot screening
Workforce groups
Midwives including specialist midwives and sickle cell specialist midwives; nurses including NICU nurses, SCBU nurses, sickle cell specialist nurses and nurses in primary care clinics; GPs, doctors, trainee doctors and the wider primary care team; health visitors; and specialist screening practitioners.
STEP 4
Sample collection and processing
Competencies
A. Explains the newborn blood spot collection process and any potential minor discomfort. (St, K)
Associated learning:
- NHS Baby: Newborn blood spot test
- NHS England:
- Newborn blood spot screening: standards
- Newborn screening (carrier screening for laboratories)
B. Collects and labels samples correctly, following national guidelines. (P, K)
Associated learning:
C. Follows national and local guidelines for sample transportation to laboratory. (P, S)
Associated learning:
- Gov.uk: Newborn blood spot screening: sampling guidelines
- NHS England: Newborn screening (carrier screening for laboratories)
D. Applies pre- and post-test infection control measures. (P, K, S)
Associated learning:
E. Accurately documents the sample collection, including date, time and personnel involved. (P, S)
Associated learning:
F. Records parental contact details and ensures they are accurate and up to date. (P, S)
Associated learning:
G. Records parental contact details and haemoglobinopathy results, where possible, for correlation with the sample. (P, K)
Associated learning:
Workforce groups
Midwives including specialist midwives and sickle cell specialist midwives; nurses including the NICU nurse, SCBU nurse, sickle cell specialist nurse and nurses in primary care clinics; GPs, doctors, trainee doctors and the wider primary care team; health visitors; and specialist screening practitioners.
STEP 5
Communication of results
Competencies
A. Ensures results are communicated to the newborn’s parent(s) promptly and sensitively, arranging a private discussion. (St, S, A)
Associated learning:
B. Delivers a clear explanation of the results, including what it means if a newborn is identified as a carrier of a genetic condition. (St, S)
Associated learning:
- NHS England:
C. Explains the implications of carrier status for both the newborn and any future siblings. (St, K, S)
Associated learning:
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- NHS Health A to Z: Carriers (sickle cell disease)
D. Outlines next steps, including further testing, specialist consultations or immediate interventions, as needed. (St, S)
Associated learning:
- NHS England:
- patient.info: Sickle cell disease and sickle cell anaemia
E. Provides opportunities for the newborn’s parent(s) to ask questions and express concerns, offering clear and consistent answers. (St, S)
Associated learning:
- British Journal of Community Nursing: Effective communication between nurses and patients: an evolutionary concept analysis
- General Medical Council: Domain 2: Patients partnership and communication
- patient.info: Breaking bad news
F. Ensures the newborn’s parent(s) are aware of recommended actions for carriers and the importance of ongoing dialogue with healthcare providers. (St, K, S)
Associated learning:
- NHS Health A to Z:
- Sickle Cell Society: Sickle Cell Disorder and Sickle Cell Trait
G. Explains the non-disease nature of sickle cell trait and clarifies its inheritance and implications. (St, K)
Associated learning:
- NHS Health A to Z: Carriers (sickle cell disease)
- NHS England: Newborn blood spot screening: programme handbook
H. Ensures the explanation of results considers cultural sensitivity to avoid stigma or misunderstandings. (St, S, A)
Associated learning:
- Office for Health Improvement and Disparities: Culture, spirituality and religion: migrant health guide
I. Offers information on genetic counselling for future pregnancies. (St, S)
Associated learning:
- NHS Health A to Z: Genetic and genomic testing
- patient.info: Genetic counselling
Workforce groups
Midwives including specialist midwives and sickle cell specialist midwives; nurses including sickle cell specialist nurses and nurses in primary care clinics; GPs, doctors and the wider primary care team; health visitors; and specialist screening practitioners.
Step 6
Post-screening support and education
Competencies
A. Provides access to support groups and educational resources about sickle cell trait. (St, S)
Associated learning:
B. Schedules follow-up sessions and offers ongoing support, if needed. (St, S, A)
Associated learning:
- Please refer to local protocols and guidelines
C. Encourages parents to share carrier status with family members to inform their reproductive decisions. (St, S)
Associated learning:
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- patient.info: Genetic counselling
D. Discusses the importance of genomic testing for other family members, if applicable. (St, K, S)
Associated learning:
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- NHS Health A to Z: Genetic and genomic testing
- patient.info: Genetic counselling
E. Provides access to genetic services for extended family members, if needed. (St, S)
Associated learning:
- Please refer to local protocols and guidelines
F. Explains that sickle cell trait is not a disease and that carriers typically lead healthy lives. (St, K, S)
Associated learning:
- NHS Health A to Z: Carriers (sickle cell disease)
G. Ensures transition of care as the newborn grows into a young person, including support through adolescence and reproductive years. (St, K)
Associated learning:
- NHS England: Counselling and referral for prenatal diagnosis (PND)
- NHS Health A to Z: Carriers (sickle cell disease)
- Sickle Cell Society
H. Supports culturally sensitive communication by recognising the role of the wider family in decision-making and, with consent of patient/patient’s legal guardian, includes them in education and discussions. (St, K, A)
Associated learning:
- e-Learning for Healthcare: Cultural Competence and Cultural Safety
- Health Education England: Developing Cultural Competence (PDF, 90 pages)
I. Where possible, refers the patient and wider family to locally commissioned community services for further counselling and education. (P, K, S)
Associated learning:
- NHS England: Sickle cell and thalassaemia (SCT) screening: programme overview
- NHS Health A to Z: Carriers (sickle cell disease)
Workforce groups
Midwives including specialist midwives and sickle cell specialist midwives; nurses including NICU nurses, SCBU nurses, sickle cell specialist nurses and nurses in primary care clinics; GPs, doctors and the wider primary care team; health visitors; and specialist screening practitioners.
STEP 7
Documentation and healthcare integration
Competencies
A. Accurately records carrier status in the newborn’s medical records. (P, S)
Associated learning:
- General Medical Council: Keeping records
- National Data Guardian: The Caldicott Principles
- NHS England: High quality patient records
- NHS England’s Genomics Education Programme: GeNotes: Consent conversation for genomic testing
B. Shares relevant information with the child’s healthcare team to ensure coordinated care. (P, S)
Associated learning:
- General Medical Council: Keeping records
- National Data Guardian: The Caldicott Principles
- NHS England’s Genomics Education Programme: GeNotes: Consent conversation for genomic testing
C. Maintains confidentiality and data protection standards when handling results. (P, S)
Associated learning:
- NHS England’s Genomics Education Programme: GeNotes: Consent conversation for genomic testing
- The British Society for Genetic Medicine: Confidentiality and genetic information
D. Updates electronic health records and IT systems with the latest carrier status. (P, S)
Associated learning:
- Please refer to local protocols and guidelines
E. Encourages collaboration among healthcare providers for consistent management of carriers. (P, S)
Associated learning:
- NHS England: Data and clinical record sharing
F. Conducts audits to assess the effectiveness of the carrier screening process and uses findings improve performance. (P, K, S)
Associated learning:
- Gov.uk: SCT checks and audits
G. Ensures healthcare professionals receive ongoing education about carrier screening and management. (P, K, S)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
Workforce groups
Midwives including specialist midwives and sickle cell specialist midwives; nurses including NICU nurses, SCBU nurses, sickle cell specialist nurses and nurses in primary care clinics; GPs, doctors and the wider primary care team; health visitors; lab technicians; and specialist screening practitioners.
All steps
Fundamental principles relevant to all steps
Competencies
A. Understands the benefits an early detection of sickle cell trait brings, with a focus on health management and informed choices. (G, K)
Associated learning:
B. Understands the procedure involved in the newborn blood spot test, including timing and methodology, as well as how it fits into routine newborn checks. (P, K)
Associated learning:
- NHS England:
- patient.info: Sickle cell disease and sickle cell anaemia
C. Demonstrates an understanding of autosomal recessive inheritance and the differences between sickle cell trait and SCD. (St, K, S)
Associated learning:
- NHS England:
- NHS England’s Genomics Education Programme: GeNotes: Autosomal recessive inheritance
- patient.info: Sickle Cell Disease and Sickle Cell Anaemia
D. Recognises common misconceptions and the barriers preventing parents engaging with sickle cell trait results. (St, K)
Associated learning:
- Sickle Cell Society: A parent’s guide to managing sickle cell disease (PDF, 120 pages) (see part 3, ‘Living with sickle cell disease’)
E. Provides information to promote autonomy and informed consent, including the right to decline. (St, S)
Associated learning:
- General Medical Council: Decision making and consent (PDF, 26 pages)
- NHS England: Person-centred care
F. Ensures healthcare professionals are competent in discussing sickle cell trait and its implications. (St, K, S)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- NHS England:
- NHS England’s Genomics Education Programme: GeNotes: Autosomal recessive inheritance
- patient.info: Sickle cell disease and sickle cell anaemia
G. Understands the interconnected risks between sickle cell trait and other haemoglobinopathies, such as thalassaemia. (St, K)
Associated learning:
- NHS England:
- Newborn blood spot screening: programme handbook
- Newborn screening
- Understanding haemoglobinopathies (see part 3, ‘Inheritance of haemoglobinopathies’)
- NHS England’s Genomics Education Programme: GeNotes: Autosomal recessive inheritance
- patient.info: Sickle cell disease and sickle cell anaemia
Workforce groups
All roles and professions
Optional step
Long-term follow-up and education
Competencies
A. Provides opportunities for parents to refresh their understanding as the child grows. (St, S)
Associated learning:
- Please refer to local protocols and guidelines
B. Facilitates access to current research and genetic updates about sickle cell trait. (St, S)
Associated learning:
- Core training typically obtained as part of the professional skill set
C. Encourages families to stay engaged with healthcare providers for updates on genetic risks and management. (St, S)
Associated learning:
- e-Learning for Healthcare: About the NHS Screening programmes
- Gov.uk: Sickle cell and thalassaemia screening: family origin questionnaire
- NHS England: Understanding haemoglobinopathies (see part 3, ‘Inheritance of haemoglobinopathies’)
D. Supports young people in understanding their reproductive choices as they transition from paediatric to adult healthcare services. (St, S, A)
Associated learning:
- Please refer to local protocols and guidelines
E. Promotes open discussions about sickle cell trait within the newborn’s family to reduce stigma. (St, S, A)
Associated learning:
- NHS Health A to Z: Carriers (sickle cell disease)
- patient.info: Genetic counselling
- Sickle Cell Society
F. Monitors and audits healthcare service users’ uptake, satisfaction and understanding of the screening programme, and can adapt based on feedback. (P, K, S)
Associated learning:
- Gov.uk: SCT checks and audits
G. Encourages and supports coordinated care among healthcare, school and community organisations. (P, K, S)
Associated learning:
- Competency developed over time via working and liaising with SCD pathways, organisations and communities
Workforce groups
Midwives including specialist midwives and sickle cell specialist midwives; nurses including sickle cell specialist nurses and nurses in primary care clinics; GPs, doctors and the wider primary care team; community health teams including health visitors and those in schools; and specialist screening practitioners.
