The following blog piece is by Wendy Cooper, Hepatitis C Support Coordinator with our Glasgow Hepatitis C Support Service.
Kirsten* tried hepatitis C treatment a few years ago, back when it was still Interferon and Ribavirin. When she first tried treatment, she was having problems with her heart. This meant her clinician had to stop hepatitis C treatment soon after she started. This was a really difficult time for Kirsten and she stopped attending her appointments with treatment services – she was determined to live with hepatitis C on her own. She had no other support at the time and had been told she had cirrhosis of the liver on top of the fear she was feeling about starting hepatitis C treatment again.
After Kirsten had disengaged with treatment services, she reached out to our hepatitis C support service in Glasgow. We spent a lot of time working with her, giving her the emotional support she needed to cope with the challenges she faced with her health. We helped Kirsten to begin attending her hospital appointments again and supported her to feel ready to try treatment for a second time, once her clinician could give the go ahead. On a practical level, this meant spending time with Kirsten to help her work through her fears and worries about treatment and hepatitis C more generally. It also meant making sure she could travel to appointments, had access to benefits and was in secure accommodation. By making sure her emotional and practical needs were addressed, we could help Kirsten be in the best position possible to start treatment.
At this time, the prospect of getting Interferon and Ribavirin again was one of Kirsten’s biggest fears. There were lots of side effects with this treatment regimen so the thought of going through it again was a big worry for her. To help her through it, we spent lots of time helping her understand how to manage her health and the side effects of treatment. We also reassured her that we would support her throughout the process. Kirsten made the decision to try Interferon and Ribavirin for a second time and began treatment.
However, due to a deterioration of her mental health, treatment was stopped for a second time. This was again, a very difficult time for Kirsten however this time we were able to support her through it and as a result, she continued to engage with treatment services. Shortly after her second treatment was stopped, new more effective and easily tolerated treatments were becoming available. Kirsten was given the go-ahead to commence a new treatment regimen by her clinician, without Interferon and Ribavirin.
Having experienced the physical and mental impact of Interferon and Ribavirin, Kirsten needed a lot of education and reassurance about the new treatment so she could make a well-informed decision about attempting treatment for the third time. A lot of anxiety about side effects and coping with it while living alone made treatment a scary prospect. Another worry Kirsten had was picking the new treatment up on a daily basis at her local pharmacy. At the time, the new treatment was prescribed on the basis that you would pick it up daily from a pharmacy. She had put a lot of work into her recovery from addiction and worried that she would meet old acquaintances more often and be tempted to use drugs again.
To help her through these worries, we communicated with her clinician and nurses to work out a plan where she would pick her hepatitis C treatment up from her pharmacy 3 days a week, rather than 6 days a week. Kirsten was much more comfortable with this and agreed to begin treatment. During treatment, we called Kirsten on the days she was taking her medication at home, to remind her to take them and help her feel supported throughout the treatment.
Kirsten has since cleared hepatitis C and feels stronger than ever in her recovery. She is volunteering with her local church and is about to start a computing course.
Kirsten’s experience shows that when we put support in place to address someones practical and emotional needs, combined with working in partnership with treatment services – we can help them to start and finish hepatitis C treatment. Going through hepatitis C treatment can be a difficult road for anyone, but doing so means you can move on with your life.
Thanks to NHS Greater Glasgow and Clyde for funding the work of our Hepatitis C Support Service. With your support, we are making a positive difference in the lives of people living with hepatitis C.
*Please note, names in this blog are changed for anonymity.
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