Hepatitis C is a blood-borne virus affecting the liver. People are able to live without symptoms for decades after infection, but untreated cases can cause end stage liver disease and cancer1. An estimated 214,000 people in the UK are living with hepatitis C2. The majority of cases are transmitted through injecting drug use, though there are other potential routes of transmission3.
Given the sometimes chaotic lives of people who inject drugs (PWID), there have been difficulties in engaging them in traditional health services set up to treat hepatitis C. Together with a provider of drug and alcohol services, Addaction, and patient group, The Hepatitis C Trust, AbbVie set up a pilot initiative in the South West of England to explore how designing services around patients’ needs could improve engagement with testing and treatment for hepatitis C. The pilot initiative comprises three key interventions:
1. Peer-to-peer education
Peer-to-peer educators were trained to deliver a personal message to service users regarding the importance of testing and attending hospital appointments. Through talks at various sites, the peer educators used their personal story to encourage service users to get tested and receive treatment. In more than half of the peer education sessions, on-site hepatitis C testing was available following the session.
2. Buddying scheme
Buddies were trained to provide support to service users throughout the treatment pathway. They would accompany HCV patients to their hospital appointments, carry out one-to-one visits and provide ongoing support through the treatment pathway.
3. Workforce development
Staff in Addaction’s South West Drug and Alcohol teams were trained to improve their understanding of HCV, the benefits of testing, new treatment options and the importance of modifying individuals’ behaviour. The training aimed to improve understanding of the ways in which drug service staff can effectively support their service users and reduce stigma about the virus.
The pilot ran from September 2015 until September 2016 and delivered some expected and unexpected outcomes.
The peer-to-peer education programme reached almost 500 people who use drugs or are in recovery, with an average of 80 people each month. At least 85% of them, when surveyed at the end of the talks, had taken in and retained all five key issues and misconceptions on HCV from the training and seven out of ten attendees felt that their knowledge of HCV had increased ‘a lot’ or ‘massively’. The number of people receiving a test for hepatitis C in the relevant services following the interventions rose by 141%.
Staff confidence to deliver messages around hepatitis C also improved with 90% of attendees reported increased knowledge of blood borne viruses and a third saying they were ‘very confident’ in their knowledge of HCV in the post-training survey.
The buddying programme trained 46 volunteers and was found to show potential to improve engagement of substance misuse clients with HCV treatment. However, the geographical distances involved in the region caused difficulties for buddies to join service users for all appointments.
Conclusions and impact
The pilot showed that improving awareness of hepatitis C and access to testing in drug and alcohol clinics, improved the number of people being tested significantly. While the buddying programme showed potential for improving the link into treatment services, not enough data from gained from the pilot to be clear that in this form it was a worthwhile intervention.
However, subsequently, the Hepatitis C Trust has refined the peer education and buddying programme and tested this in other parts of the country, including London and the North East. Early results indicate greater success for linkage to care by employing a peer coordinator, who supports volunteers with lived experience to undertake education sessions and then provide buddying support to attendees who subsequently approach them.
The Hepatitis C Trust continues to work in this area and has now:
- established peer coordination and education programs in 14 areas of the UK
- trained more than 1000 frontline workers receiving hepatitis C training within community drug services
- engaged more than 35 commissioners of substance misuse services across the UK to support or directly commission the above interventions