1. South West Hepatitis C Needs Assessment Dr Maya Gobin Health Protection Services (South West)

2. Aim To identify the current healthcare needs of people infected with hepatitis C in the South West and actions needed to improve health outcomes of this population. Objectives Describe current ‘picture’ of hepatitis C infection Describe current service provision for hepatitis C Identify perceived gaps and barriers to service delivery Make evidence based recommendations

3. Method Epidemiological -Reviewed a range of data sources: national surveillance; national and local reports; and published literature Comparative -Questionnaires distributed to PCT commissioners and service providers -Reviewed needs assessments undertaken in other areas Corporate -Semi-structured interview with PCT commissioners and service providers -Focus group with service users

4. Findings - Epidemiological The number of people diagnosed with hepatitis C (HCV) has increased by 126% since 1998

5. Findings - Epidemiological Fig 1: Laboratory reports of hepatitis C infection in the South West: 1998 to 2009

6. The number of people diagnosed with hepatitis C (HCV) has increased by 126% since 1998 Percentage of people testing positive halved from 2007 to 2009 Findings - Epidemiological

7. Figure 2: Number of individuals tested and testing positive for Hepatitis C in sentinel laboratory in the South West: 2007 to 2009

8. The number of people diagnosed with hepatitis C (HCV) has increased by 126% since 1998 Percentage of people testing positive halved from 2007 to 2009 Cases predominantly men aged between 25-44 years with history of IDU Findings - Epidemiological

9. Figure 3: Age and sex distribution of individuals testing positive for hepatitis C in sentinel laboratories in the South West: January 2005 to December 2009

10. The number of people diagnosed with hepatitis C (HCV) has increased by 126% since 1998 Percentage of people testing positive halved from 2007 to 2009 Cases predominantly men aged between 25-44 years with history of IDU Estimated that 40% Injecting Drug Use (IDU) infected with HCV Likely that over 10,000 people remain undiagnosed Hospital admissions with HCV related disease increased by 300% since 1998/99 Findings - Epidemiological

11. Figure 4: Episodes of, and individuals with hepatitis C in hospital episode statistics for the South West: 1997/98 to 2008/09

12. Findings - Epidemiological The number of people diagnosed with hepatitis C (HCV) has increased by 126% since 1998 Percentage of people testing positive halved from 2007 to 2009 Cases predominantly men aged between 25-44 years with history of IDU Estimated that 40% Injecting Drug Use (IDU) infected with HCV Likely that over 10,000 people remain undiagnosed Hospital admissions with HCV related disease increased by 300% since 1998/99 Less than 50% referred to specialist services were started on treatment

13. Findings - Comparative Commissioning Less than 50% have hepatitis C strategy and/or action plan Only four areas monitored aspects of treatment services None of the areas had a designated budget for hepatitis C Eight of the 10 areas had integrated care pathway Seven areas have a range of contractual incentives in place to increase testing Four PCTs have clinical network Five PCTs introduced Dry Blood Spot (DBS) testing

14. Findings – Comparative cont’d Testing Five of the six services collect sample from clients Testing undertaken in range of venues by BBV nurse for all five services All services will actively follow up cases who fail to attend for results or retesting Treatment Seven of 9 treatment services managed patients according to local care pathway Eight services had specialist nurses responsible for the ongoing care of patients Two offered out reach clinics in local community

15. Finding – Corporate Hepatitis C is seen as a low priority for the NHS locally, regionally and nationally Lack of public health leadership to coordinate all aspects of care Difficult to get local data on testing and treatment Funding arrangements limit service delivery Primary care/ General Practice less involved in patient testing and care Poor communication between services result in delays in patient management Community support for non or ex-IDUs is limited

16. Conclusions Large proportion of people in high risk groups remain undiagnosed Less than 50% of people referred started on treatment HCV related disease represent significant burden on health and social care service There are inequities in commissioning and provision of testing, specialist assessment and treatment within the region Action needs to be taken across the entire care pathway

17. Recommendations Set local targets to match those in other regions e.g. Scotland Strengthen data collection and information sharing between services Provide testing in range of settings e.g. Pharmacies, General Practice Develop simple, clear and consistent referral pathways into specialist care Deliver new models of care that address needs of population Manage patients according to multidisciplinary care approach Ensure adequate service capacity to deliver timely specialist care patients with hepatitis C