The social consequences of sickle cell and thalassaemia: Improving the quality of support
Briefing series: Better Health Briefing Paper 17
Publisher: Race Equality Foundation
Publication date: February 2010
- The social consequences of sickle cell and thalassaemia: Improving the quality of support [344kb PDF]
- The social consequences of sickle cell and thalassaemia: Improving the quality of support [30kb TXT]
Sickle cell and thalassaemia are some of the UK's most common genetic inherited conditions, with sickle cell disorder predominant amongst individuals of West/Central African or African Caribbean heritage, whilst thalassaemia is more common amongst people of Mediterranean and Southern European, Asian, Middle Eastern and Far Eastern origin. Although screening for the disorders has improved and is increasingly common, racism still has an impact upon treatment and care for black and minority ethnic people.
There is evidence that myths and stereotypes, primarily regarding African and Caribbean patients, influence health practitioners' perceptions of the pain experienced by patients. The paper also highlights the social consequences of the conditions, such as for children in education, arguing that culturally sensitive care, information and support are essential to ensure that carriers are able to make informed decisions regarding their healthcare needs.
- Greater understanding of sickle cell and thalassaemia is an important starting point in developing more appropriate and accessible care
- Sickle cell and thalassaemia disorders are one of the most common genetic inherited conditions in the UK. The genetic nature of the two conditions raises the potential for screening interventions, which identify healthy carriers of the trait. Such interventions are increasingly common in the UK. Facilitating ‘informed choice’, however, is sometimes difficult to achieve in practice
- Despite improvements in clinical management, poor service support remains a long-standing difficulty. The problem reflects a broader failure to engage with the social consequences of the conditions
- Examples of good practice, in both health and social care, do exist. The potential of such interventions, however, is rarely realised and lessons remain poorly disseminated.
- Improving understanding
- Screening policy
- The social consequences of sickle cell and thalassaemia disorders
- Improving care