Ethnicity – Sickle Cell Open Education

The need for better education among health professionals

One of the aims of the SCOOTER project is to provide high quality teaching resources materials on sickle cell and thalassaemia with the education of future health professionals in mind. The urgent need for this education of future healthy workers has never been more graphically, and tragically, illustrated than by the events in the UK over the past few months.

First came the death of three year old Obed-Edom Bans, one of twins, on October 23^rd 2010. He had apparently been turned away from a medical centre in South London even though he had an emergency medical card showing he had sickle cell disease. He was reportedly given an appointment for seven days later and offered a prescription for Calpol. He died three days later.

More recently, a 21-year old student of Business Management, Sarah Mulenga, underwent a painful sickle cell crisis at her rented accommodation in Essex. Her landlady is reported to have called an ambulance three times in total. When ambulance crew arrived, it is claimed that they refused to transport Sarah to hospital because she had soiled herself. The landlady claims she herself cleaned Sarah up before calling a second ambulance. Although another ambulance crew did eventually take her to hospital she later died.

Enquiries are underway in both cases, but it seems clear that greater awareness of the need to understand and take symptoms associated with sickle cell disease seriously are desperately needed if such unnecessary deaths are not to keep occurring.

Professor Simon Dyson

Ethnicity and screening for sickle cell and thalassaemia

Clearly knowledge of the genetics of sickle cell is a vital part of the curriculum and teaching resources available for health professionals in universities. But how can a social scientific approach to sickle cell be of use in the education of health professionals within academia?

One example is through my work on the relationship between ethnicity and antenatal screening for sickle cell. At De Montfort University, the work on Ethnicity and Screening for Sickle Cell and Thalassaemia (Dyson, 2005) informs the midwifery curriculum. Sociological research on the complexities of the relationship between (1)socially constructed legal-bureaucratic Census categories on ethnic origin and (2) actual genomic variation in carrying genes encoding sickle cell and thalassaemia (Dyson, 2005; Dyson et al, 2006; Dyson et al, 2007a&b; Dyson, 2007) has helped prepare midwifery students for their role in operating an ethnic/ family origins questionnaire to pregnant mothers as a first screening question that helps target those women to whom a laboratory screen for sickle cell is then offered.

This sociological approach to sickle cell is also used in education on the multi-disciplinary degree in Health Studies. The fact that sickle cell illustrates the myth of distinct biological ‘races’ helps students to meet the module learning outcome “To define and critically analyse concepts of ‘race’, racism and ethnicity and their relationship to health”. The fact that it is nonetheless statistically associated (though to a declining extent) with socially defined black and minority ethnic groups in the UK aids students in meeting the learning outcome “To demonstrate an in-depth understanding of the ethnic patterning of health and illness and the impact of ethnicity on the delivery of health care”. The manner in which the research evaluates contested screening policies of universal screening versus selective screening based on targeting screening at particular ethnic groups helps students to achieve a third module learning outcome, namely “To critically appraise current policy initiatives in the area of ethnicity and health”.

This in turn contributes to the programme learning outcomes for Health Studies, especially those concerned with “examining themes and dilemmas in contemporary British health and health care”; “drawing upon a range of theoretical and conceptual resources to evaluate both academic analysis of health, illness and health care and practical interventions in health policy and health care” and “applying theory to practical aspects of health care provision and organisation”. This subject matter is forming the basis of teaching resources that we are making available through the SCOOTER project.

References

Dyson, SM (2005) Ethnicity and Screening for Sickle Cell/Thalassaemia Oxford: Elsevier Churchill Livingstone

Dyson, SM; Culley, LA; Gill, C; Hubbard, S; Kennefick, A; Morris, P; Rees, D; Sutton, F; Squire, P (2006) Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] in England: A randomized controlled trial of two questionnaires. Ethnicity and Health 11 (2): 169-189.

Dyson, SM; Chambers, K; Gawler, S; Hubbard, S; Jivanji, V; Sutton, F; and Squire, P (2007a) Lessons for Intermediate and Low Prevalence Areas in England from the Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] Study. Diversity in Health and Social Care 4 (2): 123-35. [ISSN 1743-1913]

Dyson, SM; Cochran, F; Culley, LA; Dyson, SE, Kennefick, A; Kirkham, M; Morris, P; Sutton, F; and Squire, P (2007b) Observation and Interview Findings from the Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] Study. Critical Public Health 17 (1): 31-43.

Dyson, SM (2007) Genetic traits as pollution: ‘White English’ carriers of sickle cell or thalassaemia. In Kirkham, M (Eds) Exploring the Dirty Side of Women’s Health London: Routledge, 270-283.

Blog article by Professor Simon Dyson

Unit for the Social Study of Thalassaemia and Sickle Cell,
De Montfort University

Author: Professor Simon Dyson

Author:
Professor Simon Dyson