Increasingly, it is accepted that families at risk of specific inherited conditions should have access to appropriate genetic counselling. There is a need to ensure families have access to high quality services to enhance their ability to make decisions about their own futures or those of their children. The need for quality services has been emphasised by the Chief Nursing Officer’s initiative to enhance care, known as ’the six Cs’. This work encompasses not only competence, but the other five values: care, compassion, courage, communication and commitment.
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Giving accurate and comprehensive advice to patients and their families, while providing appropriate psychological support, is an essential component of genetic healthcare. For this reason the NHS Sickle Cell and Thalassaemia Screening Programme initiated and managed the development of this genetics competency framework for sickle cell and thalassaemia counselling.
Core competences and learning outcomes in genetics for health professionals whose work is focused on families at risk of sickle cell disease or thalassaemia.
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A selection of resources has been identified to support users of the framework in developing their competence. When selecting resources, no assumption has been made of the level of prior knowledge that the end user may have.
Wherever possible, the specific content within a resource (e.g. section of a book or page within a website) that is relevant to the genetic competence has been identified. However, for some resources this has not been done as either multiple sections or the whole resource is important.
The resources are in a range of formats including text books, reports, websites, videos and worksheets. Where ever possible a URL has been included to give you direct access to the information. This list is not exhaustive and you may know of other resources that you will find equally useful.
VIEW VIDEO: Information on carrier testing during pregnancy and discussion, including explanation of sickle cell trait
VIEW VIDEO: Giving a carrier result during pregnancy and discussion of partner testing
VIEW VIDEO: Giving information on carrier testing when a family member has previously been diagnosed with sickle cell disease
VIEW VIDEO: Explanation of sickle cell disease
VIEW VIDEO Information giving to a couple considering prenatal diagnosis for thalassaemia
VIEW VIDEO: Giving the result of a prenatal diagnostic test
VIEW VIDEO: Carrier results and discussion of testing children
VIEW VIDEO: Discussion with parents of a newborn found to be a carrier of an abnormal haemoglobin
Mapping to NGEDC competences
The detailed competency framework for SC&T Counselling set out in section 2 above has been mapped against the ‘UK Workforce Competences for Genetics in Clinical Practice for Non-Genetics Healthcare Staff’ – hereafter referred to as Clinical Workforce Competences. These competences were developed by the NHS National Genetics Education and Development Centre (NGEDC) in 2007 and, for completeness, are included below.
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Map of Medicine
Map of Medicine is a visual representation of evidence-based, practiceinformed care pathways for common and important conditions. The UK National Screening Committing decided that the Map of Medicine was the best way to develop and present all the English screening care pathways in a consistent manner.
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Pro forma generic job description
This Job Description is presented as an example of applying the competences to a specific post. Please note that local circumstances and protocols may mean that an actual Haemoglobinpathy Specialist Nurse/ Counsellor post may be very different in practice from this example.
Please also note that the competences can be applied to posts at other bands.
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Appendix - Acknowledgements
Many people have contributed to the development of these competences and we would like to thank them all for their input. In particular we would like to thank the Sickle Cell Society and UK Thalassaemia Society for their help and support and we are delighted to include letters received from them in the introducton section.