The Politics of Sickle Cell and Thalassaemia

The Politics of Sickle Cell and Thalassaemia

The Politics of Sickle Cell and Thalassaemia

The Politics of Sickle Cell and Thalassaemia


"...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.


Government policy (Department of Health 1997) acknowledges the 'special health care needs' of UK's minority ethnic communities. Yet the two particular care needs of minority ethnic groups — sickle cell disorders (SCDs) and thalassaemia — have received little and belated recognition (Department of Health 1993; Health Education Authority 1998). The National Health Service has been slow to recognize haemoglobinopathies as significant public health issues (Anionwu 1996a). Those endeavouring to improve services, for example, have difficulties competing with the more 'traditional' concerns of an NHS, responding to the needs of a predominantly white population (Bradby 1996; Dyson 1998). Recognition among other sectors of welfare provision, such as social services, housing, social security and education, is even more limited (Ahmad and Atkin 1996a). Not only do local authorities have little understanding of haemoglobinopathies, they are also not especially interested in providing support to young people or families affected by the conditions (Atkin et al. 1998a). Social security officers regularly confuse SCDs (the condition) with sickle cell trait (carrier status) and benefits are often refused as a consequence of the assessors' ignorance (Atkin et al. 2000). Educational provision is similarly ill equipped to meet the needs of children and their families (Midence and Elander 1994; Atkin and Ahmad 2000a, 2000b).

Mistaken assumptions about the limited relevance of haemoglobinopathies to health and social care debates have helped keep them off the national social policy agenda, effectively stifling any chance of mainstream funds for development and research. There has been a reluctance to allocate regional or national funds for conditions that do not affect the majority population (Anionwu 1993). This is despite statistics questioning the myth that haemoglobinopathies are only relevant for a few urban conurbations (see Modell and Anionwu 1996; Hickman et al. 1999).

In the UK it is estimated that there are approximately 12,500 people with SCDs (Streetly et al. 1997) and over 700 people with thalassaemia major . . .

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