Service support to families caring for a child with a sickle cell disorder or thalassaemia: the experience of health professionals, service managers and health commissioners

Abstract

Until recently, health care policy has largely ignored sickle cell disorders (SCDs) and thalassaemia. This is despite the difficulties faced by service users and their families: the consequences of which range from denial of informed choice to avoidable suffering and stress. This article, by presenting material from a qualitative evaluation of service support to families caring for a child with a sickle cell disorder or thalassaemia, examines these problems in detail. We specifically focus on the accounts of health professionals, their managers and health commissioners, to explore treatment and support for children with a haemoglobinopathy. We conclude that ill-coordinated and poorly resourced haemoglobinopathy services represent major problems for users and their families. However, we also highlight examples of good practice; demonstrating that improvements can be made with clear planning, employment of appropriate and well-trained staff, good inter-agency working and user involvement.