BMC Public Health 2006, 6:3 http://www.biomedcentral.com/1471-2458/6/3 TFhigeudriese2ase iceberg for Hepatitis C The disease iceberg for Hepatitis C. It had a high response rate with wide geographical spread of respondents. By conducting a two stage process we think we captured most CSPs. The study revealed varia- tions in structure and process at all stages of the patient pathway, such as size of unit, clinical lead, eligibility crite- ria for treatment, and drug regimes used. Barriers to care were identified which contributed to difficulties experi- enced by services in coping with the present burden of patients in the hospital system. Such variation in health- care provision may contribute to inequity of care for peo- ple with Hepatitis C. Having provided an analysis of the provision of Hepatitis C services in the UK, this survey can be used as a base for future planning and development, and the urgent need to address inequalities. This survey found that the majority of patients within CSPs are not receiving anti-viral treatment. This is sup- ported by industry figures of approximately 10,000 UK patients treated so far (personal communication Schering Plough, Roche)[11]. This contrasts with practice in Europe. 56% of positive subjects in France now know their serological status and 75,000 have been treated. 100,000 have been diagnosed in Germany, with 20– 30,000 treated. Italy has treated approximately 100,000 patients, one third of diagnoses. In France through a wider screening policy (including prisoners, antenatal clinics, and social security medicals), reimbursement of private laboratories, and greater awareness, testing increased by 26% and 1.2 million tests were performed in France between 2000 and 2002. Testing is freely available anon- ymously in French universities, town centres and hospital family planning clinics in addition to prisons and drugs clinics. Germany has a similar screening strategy (personal communication Bethan Bennett Lloyd). There is no for- mal screening programme in the UK except for blood donors, although the Hepatitis C Action Plan plans a case finding strategy for named high risk groups. NICE guidance in the UK recommends that interferon (pegylated and non pegylated) and ribavirin be used in moderate and severe CHC. A.European consensus (1999) statement recommended that moderate/severe necroin- flammation and/or fibrosis be treated, and in the USA treatment of moderate and severe disease with pegylated interferon and ribavirin is recommended [12-14]. Despite the national guidance many CSPs found that funding for treatment was a barrier to care, leading to a persistence of postcode prescribing with regional variation in access to treatment. The survey showed that there was a high attri- tion rate of people who could potentially benefit from specialist services, at the point of identification of high risk groups, diagnosis, referral to specialist services, defaulting from clinic, determination of eligibility for treatment and those finally receiving treatment. Further elaboration on the reasons for this attrition may contrib- ute to more effective strategies aimed at increasing the number of people potentially eligible for treatment being seen by specialist services. The true prevalence of CHC in the UK is unknown. Esti- mates remain vulnerable to the lack of information of the "ever" and current IDU population at risk of CHC, leading to wide ranges around best guesses. The cumulative number of antibody positive HCV tests reported in the UK is 59,000 (1992–2003)[15,16], which suggests that even all those who have a antibody positive test are not being managed by specialist services. Most people with CHC are therefore likely to be unknown to secondary care, and of these there are those who are undetected and unknown to services, those in contact with services but not tested, those who are diagnosed but who are not referred to spe- cialist health services, and those who are referred but do not attend (see figure 2). Best estimates derived by prag- matic modelling of this prevalent population range from 200,000–500,000 [17,18] (unpublished data- submitted for publication Parkes J. et al). By 2020, using existing models, the future burden of cirrhosis due to HCV is esti- mated to be three times that at present, posing major resource implications for services [19-22]. How can services identified by this study be improved to meet the needs of patients with CHC, and reduce the future burden of liver disease? This survey found that a large number of gastroenterologists were caring for a small number of patients with CHC. However, most patients with CHC were cared for by medium sized units led by hepatologists or ID physicians. The diversity in clin- Page 7 of 9 (page number not for citation purposes)