Insight 16: My Journey

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Was it the wright time for me access hepatitis C treatment?

After many considerations, I felt it was the correct time to start treatment. I was able to access treatment through the NHS, with good cure rates, with fewer side-effects. I also had to consider my work, family and friends and how my health impacts on these areas of my life. I felt planning and focusing ahead would give me the best opportunity to complete treatment successfully and achieve the best treatment outcome.


The importance of adherence

Adherence often requires more commitment and organization than patients are prepared to take on. However, several practical tips and tricks can help you adhere to your medications. Look for ideas and methods that fit easily into your lifestyle.Taking treatment on time is very important, be honest with yourself and your healthcare team if you miss any doses.


Emotional and psychological support

Deciding which support option works for you will be a totally individual choice. If you feel unable to talk to your partner, family or friends, speak to your healthcare team or contact a local support group which is wright for you.


Take time to build relationships

Before and during treatment I built up a good relationship with my healthcare team and together we agreed a clear treatment plan, which I feel was important in taking control of my treatment. To have a good working relationship with your employer is also important. Inform them of your treatment, what you are going through and how this may affect your performance. No need to be too specific of what disease you are being treated for.


AbbVie Care 

This patient support programme is designed to help patients with clear information and support during their hepatitis C therapy. It has been developed with healthcare professionals and patients who have firsthand experience of treatment and patient care. I believe this shows fantastic innovation, forward thinking and engages both patients and healthcare professionals.  


Motivation is key

Trying something new has motivated me and given me more energy. Learn a new skill and use this treatment experience to do something new, explore something you have always wanted to.


Side-effects are few

I believe with any medication you are taking, you will always have some kind of side-effects. Some we notice and others we don’t, but it’s important that we are aware of them. My Health & well-being tracker has allowed me to monitor my side-effects I have been experiencing and what impact which this had upon my life. Always seek medical help at the liver clinic if you are experiencing bad intolerable side-effects and allergic reactions.


Sustainable lifestyle changes

It was important to change my lifestyle behavior to make sure you get the best from my treatment. Changing your behavior can be is easy, sustainable change can become more difficult at times. I feel making lifestyle changes can reduce symptoms of side-effects. These changes may include reducing alcohol consumption, eating a healthy diet, drinking plenty of water, exercising, managing stress and getting enough rest.


The impact of social media

Sharing my insights through social media has allowed me to engage and motivate me through treatment. I have been overwhelmed by the support of the community & healthcare professionals. It is vital that we encourage paitients to seek knowledge and understanding about their treatment and condition through social media. Sharing patient’s real life experiences, I feel is key in breaking down stigma of treatment and enables individuals to interact and get the best from their treatment.


Believe in your treatment success

It is important that when you are finishing treatment you are aware that it may take a few weeks for your body to adjust. While some people will get their health back on track quicker, others may take longer. Everyone is different and setting your own pace is important. I have found having someone to speak with who I can trust has enabled me to share my experiences and at the same time has helped me move forward at this important junction of my life.


Alarming rates of reinfection

The availability of new highly effect regimens provides the foundation for marked treatment scale-up; however, one challenge to treatment scale-up is the risk of HCV recurrence, either as late relapse post-SVR or reinfection following treatment.


Moving forward

I feel it is important to develop a hepatitis C prevention programme in the UK, which addresses both high-risk sex and drug use behavior within the MSM community. This should focus on harm reduction, testing, reducing onwards transmission to others and minimizing the risk of reinfection. It is important that the community are encouraged to engage in debate on a range of platforms, which will enable people to make informed decisions about personal lifestyle choices.


Final thought

Australia is spending £500 million over five years to treat all 230,000 people living with hepatitis C. NHS England are spending £200 million to treat just 10,011 patients this year despite patients having a legal right to treatment. If NHS England could make a deal as good as the Australian Government's, then everybody who needs treatment and is ready for treatment, could access it.


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