New report and video from The Hepatitis C Trust: How people with experience of hepatitis C are helping to eliminate the virus

A new report released today by The Hepatitis C Trust highlights the charity’s pioneering use of peer-to-peer support. People who have lived experience of hepatitis C deliver workshops and one-to-one support to increase awareness of hepatitis C, encourage people to access testing, and support engagement with treatment. This forms a key part of the drive to eliminate the virus as a public health concern by 2030.

In September, Public Health England published estimates finding that over 90,000 people in the UK may have hepatitis C but be unaware they are infected. This is because for many years the virus often has no obvious symptoms. People can therefore live with hepatitis C for decades without being diagnosed, despite the fact that serious liver damage can occur: untreated cases can cause fatal cirrhosis and liver cancer.

Peer support is particularly effective at engaging the more marginalised populations where hepatitis C is most prevalent, such as those who inject drugs and people who are homeless. These groups are likely to have been under-served by public services in the past and therefore not be in contact with healthcare services to treat their hepatitis C. Peer support is seen as vital to tackle this barrier to accessing care, with one clinician commenting that attempting to eliminate the virus without peer support “would be futile.”

The report, ‘Leave no-one behind: Engaging and empowering people in hepatitis C care and treatment through peer support’, sets out the well-evidenced benefits of peer support and the advantages it can bring to people affected by hepatitis C, as well as sharing challenges The Hepatitis C Trust has overcome in developing its peer programme. The programme began in 2010 and has developed rapidly in support of NHS England’s hepatitis C ‘elimination deal’,[i] which provided funding for initiatives to support the UK Government’s commitment to eliminate hepatitis C by 2030 at the latest. This expansion has seen the charity become the largest hepatitis C patient organisation in Europe.

The Hepatitis C Trust’s peer programme involves more than 140 peers (52 paid staff and 88 volunteers) who build relationships based on shared experience and identification with those at risk of or infected with hepatitis C.

Over 25,000 people have had contact with the peer programme since it began, with the charity running services in community settings and in prisons, where hepatitis C prevalence is particularly high.  The programme involves awareness-raising workshops and staff training, ‘Talk and test’ sessions, and one-to-one support for people who have been diagnosed with hepatitis C but not engaged with treatment.

The confidence and skills volunteer Peer Mentors develop through participation in the programme help many to seek out full-time, paid employment, some having had little or no prior experience of employment. Roughly 40% of The Hepatitis C Trust’s Peer Mentors go on to full-time employment within the first 12 months of volunteering.

Writing in the report’s foreword, Dr Benjamin Stone, the lead hepatitis C clinician at Sheffield Teaching Hospitals NHS Foundation Trust, praised the impact of The Hepatitis C Trust’s peer programme: “We now consider the peer workers from The Hepatitis C Trust to be core members of our team – they are co-workers, our colleagues. Without them, we would not have been able to engage with and treat as many patients as we have done over the past 18 months. Only with them will we be able to upscale hepatitis C testing, diagnosis, treatment, and cure rates to the levels required to achieve hepatitis C elimination […] To attempt to achieve hepatitis C elimination without peer support would be futile.”

Rachel Halford, Chief Executive of The Hepatitis C Trust, said: “Peer support and the patient perspective has been integral to The Hepatitis C Trust’s work ever since it was established.

“Today peers are supporting the drive to elimination. The stigma and misinformation around hepatitis C is vast, so having people with lived experience sharing their stories is a really powerful way of delivering accurate information and dispelling myths. The people we are trying to reach and engage are from some from the most marginalised groups in society where health is seldom a priority. The shared understanding that comes from common experience is really important and can have a life-changing impact. Peer-to-peer support – encouraging people to get tested, access healthcare and get treatment – will ensure that we not only eliminate hepatitis C by 2030 but also ‘leave no one behind’”.

Read the full report here and a short video on the peer programme here

 


[i] NHS England: NHS England strikes world leading deal to help eliminate hepatitis C, https://www.england.nhs.uk/2019/04/nhs-england-strikes-world-leading-deal-to-help-eliminate-hepatitis-c