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The Politics Of Sickle Cell And Thalassaemia by Elizabeth Anionwu

The Politics Of Sickle Cell And Thalassaemia


The Politics Of Sickle Cell And Thalassaemia by Elizabeth Anionwu

...a most interesting, eye-opening and often challenging should be read by anyone involved in dealing with haemoglobinopathies, in the health or social care setting. Many others who are interested in the broader issues around chronic and particularly genetic disease will also find it stimulating reading. - Dr Anne Yardumian, Consultant Haematologist, North Middlesex Hospital, London Overall this book acts as an invaluable introduction, acting as a template for considering chronic and genetic disease, and with its comprehensive bibliography should be a natural springboard for any practitioner wanting to develop their knowledge in this subject area. - Journal of Biosocial Science Sickle cell disorders and thalassaemia are inherited blood disorders. Sickle cell disorder alters the shape of the red blood cells from their usual round appearance to something which resembles a sickle, or half moon. Those born with thalassaemia major are unable to make a sufficient amount of haemoglobin. They will develop a fatal anaemia in early childhood if not treated with blood transfusion every four to six weeks, for life. Sickle cell disorders and thalassaemia are found mainly in families that come from Africa, South Asia, the Caribbean, the Eastern Mediterranean and the Middle East. There are estimated to be over 10,000 people with a sickle cell disorder (SCD) and around 600 cases of thalassaemia in the UK. Despite this high incidence, it is still an under researched topic, and a subject about which health professionals and policy makers know very little. After years of neglect, it is now attracting policy interest and there are new moves to improve existing provision. This timely book examines the politics of sickle cell and thalassaemia and offers a detailed evaluation of the services available. It is unusual in placing patients and their families at the centre of the study, allowing their views to be heard, and relating them to the delivery and organization of services. The problems that emerge range from inadequate language support, inappropriate generalizations, poor quality care, as well as institutional and individual racism. The book also identifies models of good practice and suggests ways in which we can learn from these. General policy and practice issues are highlighted throughout, and the need for a more systematic approach to planning and providing culturally sensitive services is addressed.


I would recommend this book to any midwife; it is immediately relevant to planners of maternity services, those involved in antenatal screening and testing and anyone caring for families affected by these conditions. - Midwifery Digest

About the Author

Elizabeth N. Anionwu is Professor of Nursing and Head of the Mary Seacole Centre for Nursing Practice at Thames Valley University. In 1979 she became the first sickle and thalassaemia counsellor to be appointed in Britain and was Head of the Brent Centre from 1979 to 1990. Elizabeth N. Anionwu has published extensively about sickle and thalassaemia disorders and organised numerous courses for health professionals within the UK and overseas.Karl Atkin is Senior Lecturer at the Centre for Research in Primary Care, University of Leeds. He has published on the experience of carers, the organisation of primary care and the provision of support to people from different minority ethnic groups. He is co-editor (with Waqar Ahmad) of 'Race' and Community Care (Open University Press) and is co-author (with Julia Twigg) of Carers Perceived: Policy and Practice in Informal Care (Open University Press).

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Book Info

Publication date

1st June 2001


Elizabeth Anionwu

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Open University Press


176 pages


Social discrimination & inequality
Ethnic studies
Health systems & services
Social welfare & social services
Social research & statistics



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