Sickle cell is a group of disorders that affects haemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. ... ||more
Understanding the disorder is vital. Many patients can reduce the frequency of their crises by careful management of their general health - and by limiting their exposure to risk factors such as dehydration... ||more
Neville Clare was born in Jamaica in the nineteen-forties. His early years were affected by persistent ill-health, for which no cause could be find though his parents consulted doctors and therapists of various kinds. He came to England as a child in the nineteen-fifties, and in his book he recounts vivid memories of growing up in London. At the age of 17 he was rushed to hospital for emergency surgery. He was found to have a form of sickle cell disorder, which meant that surgery was the last thing that should have been done. He lived to tell the tale. However, amazingly, he was not told he had the disorder, nor what its significance was, for some years. Up to that point, like the vast majority even in the black community, he had not heard of sickle cell.

Neville Clare became committed to working to improve understanding and treatment of sickle cell disorder. With almost no resources but with the encouragement of his parents, and the support of a growing network of friends, associates, patients and their families - and the help and goodwill of certain health professionals and, in time, celebrities – he established the role of OSCAR, the first UK organisation to campaign on behalf of patients. He has spent his life working to promote patient rights and welfare, and to improve treatment protocols and sickle cell awareness.

Through self-education, Neville Clare became an expert in sickle cell and its wider context. In later life he obtained a Masters degree and then a PhD in community health education, writing his thesis on social and psychological aspects of sickle cell disorder. He then brought out his autobiography, An Oscar For My Troubles, which concentrates on the people and issues he has worked with, and wherein he writes about what he has always felt to be his true role: “engaging in political action on behalf of the patients”.