Guidance

SCT counselling knowledge and skills guide

Published 28 September 2020

1. Identification

1.1 Core competence: identify individuals and families who will benefit from testing and counselling

Learning outcome: understand the importance of family history in assessing predisposition to genetic conditions

Practice indicators:

1. Obtain family history information.

2. Draw a multigenerational family pedigree using standard symbols.

3. Document potentially significant sickle cell and thalassaemia (SCT) information from a family history. To include donor egg/sperm, bone marrow transplant and surrogacy.

Learning outcome: be able to make genetic risk assessments for individuals, or their offspring, at risk of SCT.

Practice indicators:

1. Explain the relevant inheritance patterns and the way genetic conditions may occur.

2. Interpret a multigenerational family history to assess risk of SCT.

3. Describe the factors that may affect the accuracy of a genetic risk assessment based on family history. To include paternity issues, donor egg/sperm, bone marrow transplant and surrogacy.

4. Explain why some individuals affected by, or at risk of, a condition may have no family history of that condition.

Learning outcome: be aware of the potential impact of SCT on an individual and their family

Practice indicators:

1. Outline the impact and support needs of an individual and family affected by SCT.

2. Describe how an individual’s personal experience may affect their perception of their condition.

3. Explain how to gain assistance from genetics and other relevant specialists and peer support services.

Learning outcome: be able to make appropriate referrals to genetic services and other agencies that are available at local/regional levels

Practice indicators:

1. Describe the local care pathway from identification of individuals at risk, or affected by SCT, incorporating genetic services and information.

2. Explain how to make an offer of prenatal diagnosis (PND) and a referral to genetic and other services.

3. Describe the genetic services available to individuals and families at local/regional level. To include voluntary organisations.

4. Outline local and national pathways relevant to pre-conception testing, antenatal and newborn screening, prenatal diagnosis (PND) and pre-implantation genetic diagnosis.

2. Communication

2.1 Core competence: understand the importance of effective communication in supporting individuals and families with, or at risk of having a baby with SCT

Learning outcome: understand the influence of ethnicity, culture, religion and ethical perspectives

Practice indicators:

1. Describe the potential effects of culture, ethnicity, religion and values on an individual’s use of genetic information and services.

2. Explain the importance of sensitive communication when exploring cultural, religious and ethical perspectives.

3. Demonstrate the appropriate use of SCT information to meet an individual’s needs taking into consideration their cultural, ethnic, religious and ethical perspectives.

Learning outcome: be able to communicate effectively with individuals and families

Practice indicators:

1. Demonstrate effective communication skills, acknowledging an individual’s level of understanding of genetic conditions, for example use of clear language and appropriate terminology.

2. Use relevant information resources to support effective communication, for example national SCT carrier leaflets.

3. Assess an individual’s understanding of information provided.

4. Describe what actions are to be taken if an individual does not understand the information.

5. Discuss how information could be shared with family members and its potential impact.

3. Supporting personal informed choice

3.1 Core competence: advocate for the rights of all individuals to make a personal informed choice

Learning outcome: recognise the importance of providing SCT information and support fairly and accurately without coercion or personal bias

Practice indicators:

1. Demonstrate a non-directive approach in providing SCT information.

2. Describe how personal values and beliefs, of self and individuals, may influence the care and support provided.

3. Explain how to avoid assumptions based on diverse characteristics, such as ethnicity and cultural values.

Learning outcome: respect personal informed choice

Practice indicators:

1. Explain potential implications, limitations and alternatives in relation to an individual’s choices.

2. Demonstrate supporting personal informed choice and explore reasons for choices.

3. Describe how to assess an individual’s ability to make an informed decision and situations when this may occur.

4. Explain the national and/or local policy for supporting individuals who lack capacity to make informed decisions, for example children or vulnerable adults.

Learning outcome: be aware of potential misuse of human SCT information

Practice indicators:

1. Discuss situations when the misuse of human SCT information could occur.

2. Describe the potential impact of the misuse of human SCT information.

3. Explain what action should be taken if the misuse of human SCT information is identified.

4. Knowledge and awareness

4.1 Core competence: understand the genetic basis and clinical implications of SCT

Learning outcome: understand the genetic basis of SCT

Practice indicators:

1. Explain how SCT is inherited and convey basic information about the clinical manifestation of the condition, health impact and potential complications.

2. Identify populations at high and low risk of SCT.

3. Explain the difference between germline and somatic genetic conditions.

Learning outcome: recognise the clinical implications of SCT

Practice indicators:

1. Assess the chance of a couple having a child with SCT.

2. Explain the implications of concurrent genetic conditions, for example G6PD, that may affect the severity of sickle cell disease and thalassaemia.

3. Describe the difference between genetic susceptibility and clinical manifestation of condition using basic concepts of risk.

4. Provide appropriate lifestyle advice to prevent or reduce the severity of SCT.

Learning outcome: educate health and allied practitioners about SCT

Practice indicators:

1. Discuss how you have educated health and allied practitioners about SCT.

2. Reflect on situations when health and allied practitioners have consulted you about SCT.

3. Summarise resources accessed and created when educating health and allied practitioners.

5. Use of genetic information, tests and results

5.1 Core competence: care for and support individuals and their families before, during and after genetic testing

Learning outcome: understand the potential physical, psychological and social consequences of SCT information for individuals, family and communities

Practice indicators:

1. Explain the potential risks, benefits and limitations of genetic testing and access to genetic information for the individual and family.

2. Discuss the potential psychological effects of accepting or declining SCT testing on the individual and their families.

3. Demonstrate effective communication when responding to individual SCT concerns, seeking advice from others when appropriate.

Learning outcome: understand the screening and diagnostic tests and the patient care pathways

Practice indicators:

1. Explain the screening and diagnostic tests and the difference between them.

2. Explain what laboratory tests should be requested for preconception, antenatal, postnatal diagnosis and newborn.

3. Demonstrate the local blood test request process.

4. Provide clear explanations to individuals about test procedures and reporting timelines.

5. Describe pathway for declining the options offered.

6. Explain the meaning of possible test results and what they may mean for the individual and family.

7. Describe the NHS SCT screening programme standards and care pathways.

8. Describe the SCT checks and audits in place for quality assurance.

Learning outcome: be aware of the ethical, legal and social issues relating to testing, recording, sharing and storage of SCT information

Practice indicators:

1. Demonstrate confidentiality when discussing or recording genetic information.

2. Describe the optimal environment in which to share and discuss SCT information.

3. Describe the local, national and legal policies and procedures in relation to information governance.

4. Explain what is required before any information can be shared with health and allied practitioners and other family members.

6. Maintaining SCT competence

6.1 Core competence: maintaining and updating SCT knowledge and skills through lifelong learning

Learning outcome: maintain awareness of developments in SCT to ensure safe and effective practice

Practice indicators:

1. Identify own learning needs in SCT and how these will be met.

2. Provide evidence of continued professional development and regular clinical supervision in relation to SCT.

3. Reflect on impact of clinical supervision and continuing professional development (CPD) on own practice.

Learning outcome: be aware of own role in the referral to, provision of or follow-up to genetics services

Practice indicators:

1. Describe own role and responsibilities and that of the multi-disciplinary care team in the provision of SCT care.

2. Provide effective advice and support when dealing with SCT enquiries.

3. Discuss what sources you would access to get further advice and support about SCT, for example national SCT Screening Programme study days and the PHE Screening Helpdesk.

7. Accessing information and resources

7.1 Core competence: obtaining and using information to support credible, current communication about SCT

Learning outcome: be aware of reliable SCT information sources and technologies to inform practice

Practice indicators:

1. Demonstrate the use of a range of current information sources and technologies.

2. Describe how to critically evaluate the quality of information sources.

Learning outcome: be able to support individuals and colleagues in gaining current, reliable SCT information

Practice indicators:

1. Demonstrate effective communication skills when discussing SCT information with other individuals, families and colleagues.

2. Demonstrate appropriate signposting of individuals and families to reliable and relevant information.

8. Ongoing support

8.1 Core competence: providing ongoing support to individuals and families with SCT

Learning outcome: be aware of how an inherited condition and its implications might impact on family dynamics

Practice indicators:

1. Explain the potential psychological and social impact of the genetic aspects of SCT on the individual and family.

2. Demonstrate sensitivity of family dynamics and the impact of SCT.

3. Describe situations where ongoing support to individuals and families is required.

Learning outcome: recognise the expertise of individuals and their families in managing SCT

Practice indicators:

1. Demonstrate working in partnership in managing SCT with individuals, their families, voluntary organisations, support groups and other specialist agencies.

2. Describe how individual needs may change over time and how they might be met.

Learning outcome: understand the need to provide services consistent with current national SCT screening standards and clinical standards

Practice indicators:

1. Demonstrate the use of current screening standards and care pathways.

2. Discuss an awareness of the national standards for the management of those with clinically significant sickle cell and thalassaemia.