Primary care and haemoglobin disorders: A study of families and professionals

Abstract

In the UK, around 600 people are affected by thalassaemia major and 6-10 000 by sickle-cell disorders. These haemoglobin disorders are recessively inherited and have greater prevalence in certain ethnic groups. This paper explores affected families' and practitioners' views about the role of primary health care in haemoglobinopathy services. The paper is based on a qualitative study of 62 parents of affected children and 51 professionals, from seven districts in northern England. Services were lacking in coherence but showed some examples of good practice. Primary care staff were felt, by other professionals, to be poorly informed about haemoglobinopathies. Their greater potential in facilitating screening for carrier status and diagnosis was emphasized by practitioners and policy makers. The potential for primary care involvement in screening and caring for haemoglobinopathies remains to be realized.