Attended by myself as the Patient Council Representative for the Hepatitis C ODN, Leicester, drug service professionals, commissioners and health professionals working across the Midlands and East. The event included talks and discussions on the hepatitis C landscape by the ODNs established in the region.
Hepatitis C is a major cause of the UK’s rise in mortality from liver disease, and represents a serious health inequality issue that predominantly affects disadvantaged and marginalised groups. The event aimed at enhancing local service provision and seizing the opportunity for progress provided by a new generation of highly effective hepatitis C drugs.
The main areas of focus were…
•National developments for hepatitis C Operational Delivery Networks (ODNs) in the Midlands and East region.
•Showcasing and sharing good practice in the prevention, testing, diagnosis and treatment of hepatitis C.
•Identifying specific issues and potential solutions for tackling hepatitis C in the Midlands and East.
The morning started with welcome and scene setting by Dr Geraldine Linehan, Regional Clinical Director, NHS England Specialised Commissioning.
Hepatitis C ODN updates…
Professor David Mutimer, Consultant Hepatologist, Birmingham from the West Midlands ODN gave a very interesting presentation on some of the challenges they face across the 13 trusts. At present, they are putting the sickest patients first for hepatitis C treatment and are meeting their run-rates. They are re-engaging with patients, case finding and focusing on establishing better pathways with GP’s. In the past year, they have treated 861 patients with 39 patients failing treatment.
Dr Martin Wiselka, Consultant in Infectious Diseases, Leicester focused on a detailed update of the Leicester ODN. Establishing new clinics in the community, joined up working and establishing better networking and educational events in the area.
The ODN itself if focusing on working with patients and recording patient feedback for the development and delivery of services. Over December the ODN did have a drop-in run rates due to the time of year, but he was confident that they would be achieved these in the future.
Moving forward improved referrals need to be established as data would suggest that up to 40% of patients are not being referred correctly. 12 patients are newly diagnosed each month in Leicester and increased testing for hepatitis C is needed to be increased in the future.
Further updates were presented from Dr Will Gelson, Consultant Hepatologist, Cambridge from the Eastern Hepatitis C ODN and Dr Adam Lawson, Consultant Hepatologist, Derby, Nottinghamshire, Lincolnshire and Derbyshire ODN.
National Hepatitis C update from Professor Graham Foster, National Clinical Chair for the Hepatitis C Delivery Networks gave a passionate and informative presentation. He confirmed patients with G3 will now have access to treatment and in the next year 12,500 patients will be able to access hepatitis C treatment.
His Summary of the ODN experience…
•They have treated more patient than ever before
•Outcomes are excellent mirroring clinical trails
•The have cured most of the cirrhotic patients
•There is successful and established collaboration across the ODN network
•Limited access to treatment for G3 patients.
•The run rate suffered because of this
•Finding new patients and re engagement is essential
Challenges they face…
•Transparency of CQUIN’s
•Treatment to who needs it and when they are ready to engage witin treatment and care
•If you want data, produce a decent web based database and line to NHS high cost drugs site.
Moving forward ….
•Achieving run rates which are at present 90-94%
•Establish new ways of working
•Clinical leadership and input is critical
•Maintain what we have achieved so far
•Hepatitis C is a gateway into services and car
Author: David Rowlands
The future of ODN’s
•Data collection is critical
•To develop local “trace and treat” programmes within regional ODN’s
•To manage the “resistant” patients which will require high end virology
•The networks will change from “gatekeepers” to “enablers”
“Great talks, ideas & discussions”
RAVs - a practical approach, Dr Martin Wiselka, Consultant in Infectious Diseases, Leicester.
DAA therapy and HCC risk - to treat or not to treat, Dr Ian Rowe, Consultant Hepatologist, Leeds.
Debate - DAA therapy pre- or post- transplant? Dr Ahmed Elsharkawy, Consultant Hepatologist, Birmingham and Dr Andy Bathgate, Consultant Hepatologist, Edinburgh.
Community hepatitis C services
The hepCATT study and setting up and outreach programme in Lincolnshire, Dr A Sreedharan, Consultant Hepatologist, United Lincolnshire Hospitals
The aim of this project was to evulate the effectiveness of a complex intervention co-ordinated by a “facilitator” increasing hepatitis C testing and referral rates for as well as engagement with treatment services.
Peer-led education shows that individuals can learn more effectively from within their own peer group. Research has shown that peer educators can have a greater validity and empathy with clients because they have direct experience of the problems they are facing. Consequently, they are more likely to engage with people who would otherwise be unlikely to access services, and can support them more effectively.