From addiction to advocacy: former patient urges Hepatitis C testing

A woman who overcame substance misuse is sharing her journey to battle stigma and inspire others to get tested for hepatitis C.

Julie* is in her 30s and has lived through years of drug addiction and instability from a young age.

Her teenage years involved drugs, sex work and crime. As her addiction progressed, the more she believed she was immune to hepatitis C, despite knowing her lifestyle increased her risk.

Julie, whose dad died of hepatitis C, was diagnosed with the virus in 2019 after spending time in prison – a turning point that motivated her to change her life for the better.

Now drug-free, she has not looked back and works with vulnerable people to break down barriers and support people living with addiction to access healthcare services, including hepatitis C testing and treatment.

Oxfordshire-based Julie was treated by the Community Hepatology Nursing team at Oxford University Hospitals NHS Foundation Trust (OUH). She shared her experience with the Trust and said: "I had lost all trust in society but found support within the community nursing team – and now I’m able to help people like my younger self by providing advice and support.

"I was desperate to get out of my old ways. The stigma of my substance misuse held me back, but I want people to know they are not alone. There’s no need to feel ashamed – support is available."

Julie is now free of hepatitis C and is an advocate of the multi-agency approach, including charities and NHS Trusts, in providing the right support to the right people in the right place.

She said: "I live a life today that I couldn’t even have imagined during addiction. I'm back in the real world. I have a purpose. I’m employable. I have a family. And that’s all thanks to the support and treatment I’ve received from charities and healthcare professionals.

"I'm so grateful – sometimes I wonder how I got here."

Julie is passionate about raising awareness of hepatitis C and encouraging people to get tested. She educates others through talks, workshops and training sessions. She visits women in prisons and helps people get tested and to access subsequent treatment.

She said: "It is crucial that people get tested for hepatitis C if they have ever injected drugs recreationally or shared drug-taking paraphernalia – even once. Testing is really easy and can be done via home tests or via charity and healthcare support."

Lizi Sims, Community Hepatology Nurse Manager at OUH, said: "Being part of this patient's story has been a privilege for us. Her story highlights the importance of having a team that can meet the person where they are at, empowering patients through trust, education and sensitive care.

"Patients like Julie are often navigating many daily challenges and competing priorities. We recognise that we only play a small part but feel it can be a very important one to help manage their long-term health and future."

Yvonne Christley, Chief Nursing Officer at OUH, said: "This patient’s full-circle journey from patient to advocate is deeply inspiring. Her courage in sharing her experience helps to challenge stigma and shows what’s possible when people are met with compassion and support.

"Her story also highlights the importance of partnership working between the NHS and voluntary sector to reach people who may otherwise fall through the cracks. We are proud of the role our community nursing and hepatology teams played in her recovery."

Hepatitis C Trust

Following successful treatment, and since 2023, Julie has worked with the Hepatitis C Trust. Despite initial reluctance, she found purpose in supporting others, helping to break down barriers and stigma surrounding hepatitis C and healthcare access.

"Having never held paid employment before, this has given me purpose, confidence, and a sense of community," she said.

"What the Hepatitis C Trust did for me is to enable me to live back in the world. They showed me how to live properly and have responsibility. I owe them a lot.

"I'm so passionate about using my experience for the better and to help other people."

Chris Cowie, Peer Programme Manager for Oxford & Thames Valley at the Hepatitis C Trust, said: "Julie's journey is a powerful testament to the impact of peer support and the strength of the human spirit.

"By sharing her story, Julie is not only breaking down stigma – she’s helping others believe that recovery is possible, that they matter, and that they’re not alone. We're incredibly proud to have her as part of the team."

Get tested for hepatitis C

Hepatitis C is a virus that affects the liver and is usually spread through blood-to-blood contact. If left untreated it can result in serious and life-threatening damage over many years.

In the UK, most hepatitis C infections happen in people who inject drugs or have injected them in the past. People who are also at risk of hepatitis C include those who have:

• Had a blood transfusion or blood products or organ transplant before 1996,
• Had medical or dental procedures or tattoos abroad where infection control measures may be poor,
• Or were born abroad in areas of high prevalence such as Eastern Europe, South East Asia, some countries in Africa, and the South Caucasus region.

Hepatitis C often does not have any noticeable symptoms until the liver has been significantly damaged, meaning many people have the infection without realising it.

People over the age of 18 who live in England can order free and confidential home tests via the Hepatitis C testing portal on the NHS website.

GPs, sexual health clinics, genitourinary medicine (GUM) clinics or drug treatment services also offer testing for hepatitis C.

The condition can be treated with medicines, which usually need to be taken for several weeks, that stop the virus multiplying inside the body.

* The patient’s name has been changed to protect her privacy.