Childhood leukaemia - communicating with a worried public

1. Introduction This presentation is a case-history of an attempt by a local health authority in the U.K. to deal with high levels of public anxiety about a cluster of childhood leukaemia in Northampton by a risk communication strategy. Usually, in similar circumstances of intense public demand and extensive adverse publicity, health authority's have responded by setting up, predictably inconclusive, epidemiological studies. Despite intense public, political, media and management pressure to do just this, we chose rather to educate the public about disease clusters and the limitations of epidemiological methods. This involved working with the community and media and producing a written report for parents and later working with the BBC to produce a programmes on disease clusters. The conference presentation will involve using video clips of television coverage to illustrate aspects of the approach taken which cannot be adequately captured in the written word, together with an evaluation of its effectiveness. This paper gives background information. 2. Background In 1993 Northampton Health Authority was contacted by a local councillor about an apparently abnormally high number of children with leukaemia in his ward. He reported public concern that this was due to an accident on the railway line, some years previously, involving radioactive material. Identification of cases, and calculations of the observed and expected rates of leukaemia, suggested that the " cluster " was probably due to chance and the post hoc identification of the cluster. There were no records or newspaper reports or other evidence of an accident on the railway involving radioactive material. A literature review of the epidemiology of childhood leukaemia and the investigation of disease clusters suggested that a local epidemiological study to determine the cause or causes of leukaemia in the children in Northampton would be unable to provide further answers. Reassurance was fed back to the community using local networks and community leaders informed us that public anxiety appeared to have been allayed. The matter was concluded. Unexpectedly in July 1995 a local newspaper, published an article with the banner headline " WHY did this child die? " The article demanded " a full investigation into the causes of leukaemia on Pembroke Road ". The health authority was unaware that, during the intervening year and a half, public anxiety had reached high levels. During the next days and weeks there was a barrage of headlines and articles in the local press and the start …