This year’s theme, “It’s Time for Action,” emphasises the urgent need for a collaborative and holistic approach to increasing access to hepatitis diagnosis and treatment while supporting people living with hepatitis.
This World Hepatitis Day, we explore the importance of a holistic approach with insights from Eleanor Parris, Health Improvement Coordinator at Waverley Care, and Amy McEwan, Researcher at Glasgow Caledonian University.
While testing is critical, addressing root causes and providing comprehensive support is essential to help individuals with hepatitis and prevent reinfection.
By taking action now, we can:
- Save lives
- Prevent new infections
- Reduce liver cancer cases
- Lower healthcare costs
- Support people living with hepatitis
- Eliminate hepatitis in Scotland
According to the World Health Organization:
- Only 1 in 4 people with hepatitis B are diagnosed, and only 1 in 5 receive appropriate treatment
- For hepatitis C, only 1 in 2 people are diagnosed, and just 1 in 6 are cured
- Deaths from viral hepatitis have increased from 1.1 million in 2019 to 1.3 million in 2022
TAKING A HOLISTIC APPROACH TO SUPPORTTING PEOPLE WITH HEPATITIS
Much of the information we encounter about hepatitis revolves around numbers—regional, national, and international statistics like the ones above.
While these figures are striking, it’s important to remember that behind each statistic is a person whose life is affected by this virus.
At Waverley Care, many of our service users face a multitude of challenges, including homelessness, unsafe and insecure housing, violence, crime, a challenging welfare system, poor physical and mental health, isolation, loneliness, stigma and self-stigma, family breakdown, gender-based violence, discrimination, poverty, addiction, shame, trauma, sexual abuse and exploitation, care experience, involvement in the criminal justice system, and inadequate service provision.
Eleanor Parris, Health Improvement Coordinator, Waverley CareBuilding relationships with our service users at Waverley Care and understanding that a hepatitis diagnosis does not exist in isolation, is crucial.
Supporting individuals living with or at risk of hepatitis requires more than just a medical model; it necessitates addressing the whole person to achieve sustained improvements in their health outcomes.
Eleanor Parris, Health Improvement Coordinator, Waverley Care explains: “We need to get to know our service users: what they like and dislike, what they want and need, and how we can support that.
“It is crucial to understand how they feel, identify their strengths and support networks, and learn about their survival strategies, beliefs, and coping mechanisms.
“By recognising their goals and how we can help them achieve these, we adopt a positive approach that identifies the spaces where people find healing.
“Celebrating who they are encourages open and honest sharing and helps challenge the stigma they experience from external services, their peers, and within themselves.
“Building relationships with our service users at Waverley Care and understanding that a hepatitis diagnosis does not exist in isolation, is crucial in supporting individuals to access treatment and reduce the risk of reinfection”.
Photo credit: Centre for Homelessness Impact
Amy McEwan, Researcher, Glasgow Caledonian University.There is a real need to tackle stigma at its core to ensure people experiencing a reinfection are treated with the dignity and respect that they deserve, by everyone in their lives.
HEPATITUS C REINFECTION
Even after being cured or recovering from hepatitis C, it is still possible to get reinfected. In Scotland, reinfection is particularly common among people who inject drugs and men who have sex with men.
Amy McEwan, a researcher from Glasgow Caledonian University, has studied the factors that can lead to hepatitis C reinfection among people who inject drugs in Scotland.
She interviewed healthcare professionals who test, treat, and diagnose hepatitis C and individuals who inject drugs with life experiences of hepatitis C and found the following:
Insights from healthcare professionals
- Acknowledging the Social Context of Reinfection: Recognising the complexity of HCV reinfection and the broader factors at play.
- Exerting Power and Control: Influence treatment adherence with an aim to prevent reinfection.
- Seeking Accountability: Seeking accountability for reinfections, sometimes looking to the ‘chaotic’ lifestyles of individuals.
- Inflexibilities and Limitations in Services: Highlighting challenges within the healthcare system itself.
- Strong Partnerships and Strained Relationships: Celebrating the crucial role of third-sector organizations in supporting treatment access, while also noting some tensions in these partnerships.
Insights from people with lived experience
- Before Reinfection: Early life experiences, isolation, and drug use as a coping mechanism.
- After Reinfection: Experiences focused on stigma from family members, healthcare professionals, and peers. Increased self-stigma, where individuals felt undeserving of treatment.
- Avoiding Reinfection: Strategies varied from total abstinence to maintaining structure and routine. Family, especially children and grandchildren, played a significant role in motivating behaviour change.
Amy McEwan, Researcher at Glasgow Caledonian University explained: “The results point toward the need for a more holistic approach to hepatitis C reinfection. It’s not enough to just test and treat new reinfections. We need to look at these root causes and how individuals can best be helped, with their voices at the forefront.
“As we move towards elimination it’s important to remember that these are people with real experiences and real feelings.
“Stigma is a big part of the experience after reinfection. There is a real need to tackle stigma at its core to ensure people experiencing a reinfection are treated with the dignity and respect that they deserve, by everyone in their lives.
TIME FOR ACTION
Addressing hepatitis requires a comprehensive approach, focusing on increasing access to diagnosis and treatment, and supporting those living with the virus.
In order to better support people living with hepatitis, as well as eliminating new hepatitis infection in Scotland by 2025, we are calling on the Scottish Government to:
- Expand collaborative case-finding work in Health Board areas, building on successful initiatives to identify people with undiagnosed hepatitis C.
- Implement opt-out blood-borne virus testing in all Scottish prisons. Despite commitments, this only happens in some.
- Improved data collection to track new infections and re-infections of hepatitis C, to better understand how close Scotland is to elimination.
- Develop a ‘Maintaining Hepatitis C Elimination Action Plan’ in preparation for when elimination is achieved – including actions on harm reduction and peer support.
LOOKING AHEAD
At Waverley Care, we understand the complex challenges faced by our service users, from housing insecurity to poor mental health. A holistic approach that addresses the whole person, not just the medical condition, is essential for sustained health improvements.
Building relationships, understanding individual needs, and combating stigma are all key components of effective support.
Many people who have hepatitis are unaware they have the infection, as they might not have any symptoms. Regular testing for hepatitis is still crucial for those at high risk to prevent being reinfected themselves and the possibly of passing the virus on to others without knowing.
Both hepatitis B and C tests are available free of charge at NHS sexual health clinics. We also offer testing in some locations via Waverley Care. You can find your nearest testing location using our service finder.
Find out more about our hepatitis services at Waverley Care here.
Looking for advice?
If you are living with, or at risk of, hepatitis and have questions about a new diagnosis, testing or treatment, we can offer support and advice. Get in touch with us by filling out our contact form.