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Best practice in the treatment of hepatitis C

This year sees the 20th anniversary of the official naming of hepatitis C. When you consider that deaths, transplants and hospital admissions for hepatitis C-related end-stage liver disease continue to rise, it prompts the question – could more be done?

Opal Greyson
Clinical Nurse Specialist in Viral Hepatitis
Royal London Hospital, Whitechapel, London

Despite great work across the country to diagnose those at risk of hepatitis C, latest estimates show that around 100,000 people are still unknowingly carrying the virus.1 A new Department of Health campaign kicked off in February with a hard-hitting advertising and media campaign to encourage the public to think about their life and the risk factors for the virus.2 Yet, it is also important for nurses to help with the process, too, by being up to speed on the clinical side and proactively encouraging patients at risk to get tested. 

However, for many of us, our work doesn't stop there. We also need to consider how we support patients from diagnosis through to treatment to really ensure that patients get tested, get treated, and get cleared.

One of the major issues in improving testing rates for hepatitis C is the sheer lack of awareness of the virus among health professionals themselves. In conversations with colleagues, I have noticed that knowledge of hepatitis C among community health professionals is patchy. Chronic infection with this virus can lead to serious liver disease, so it is vital to know the essentials – what it is, how it is transmitted and the treatments that are available.

As infection with hepatitis C does not usually cause symptoms for many years, most patients do not know that they have it.1 This is why the role of the nurse in spotting those at risk is crucial. With increased knowledge and understanding of hepatitis C, they are ideally placed to help raise awareness and increase the likelihood of patients being diagnosed and treated before serious liver disease has developed.

How can hepatitis C be spread?
Hepatitis C is a blood-borne virus, which means that it is transmitted primarily by direct blood-to-blood contact with someone who is infected. It is important to stress to the patient that hepatitis C can be transmitted in a number of ways; for example, through sharing needles or other equipment when injecting or snorting drugs and through blood transfusions in this country before donor screening was introduced in September 1991. However, one is still at risk of acquiring hepatitis C from blood/blood products in developing countries.

Other risk factors include having medical or dental treatment with unsterile equipment in developing countries, tattoos or piercings with contaminated equipment, or sharing razors or toothbrushes.

There is a low risk of getting hepatitis C from unprotected sex with someone who is infected and the virus can also be passed from infected mother to child – but the risk is low.1

Avoiding hepatitis C
In my experience, nurses and patients often become confused when it comes to the question of vaccination. Many mistakenly think that there is a vaccine to protect against hepatitis C infection as there is for hepatitis A and hepatitis B. As no vaccine is available it is vital that nurses ensure their patients are aware of this, and of the ways in which the risk of hepatitis C infection can be avoided. Some nurses I have spoken to do not even realise that they are at risk of contracting hepatitis C in the workplace through, for example, a needlestick injury, because they mistakenly believe that they are vaccinated against it.

Diagnosing hepatitis C
There are often no symptoms at all for hepatitis C, and patients may be infected without realising it. So, if you suspect that a patient may have been exposed to hepatitis C in the past, they should be offered an antibody test, which will identify if the patient has ever been infected.

This can be a lengthy process as it can take up to three months for antibodies to hepatitis C to become detectable. Therefore, in patients whose exposure has been recent and whose first test is negative, the hepatitis C antibody test should be repeated three months after the last possible exposure in order to avoid misdiagnosis during this "window period".

If the antibody test is confirmed as positive, the next steps are to establish if the virus is still present and, if so, to diagnose the extent of the underlying liver disease. To do this, further tests are required, some of which may be carried out in primary or secondary care according to local arrangements. These will include an HCV-RNA test and a liver function test and a referral to a gastroenterologist or hepatologist.

Treatment for hepatitis C
In recent years, more effective treatments for chronic hepatitis C have become available. The National Institute for Health and Clinical Excellence (NICE) has recommended a combination of pegylated interferon alpha and ribavirin for the treatment of patients with mild-to-severe chronic hepatitis C.3

The duration of treatment varies from six to 12 months depending on the virus genotype. It consists of a weekly injection of pegylated interferon, which is often self-administered. In addition, the patient will be prescribed ribavirin to be taken daily.4

Overall, this treatment is successful in clearing the infection (with no detectable virus in the blood six months after treatment has ceased) in up to 55% of patients. Success rates vary according to the infecting genotype, being up to 45% in those infected with genotype 1, but rising up to 80% in those infected with genotypes 2 and 3.3 However, without successful treatment, the virus can result in cirrhosis of the liver and primary liver cancer. 

Treatment can be tough, however, which is why it is so essential to support people through the process.

Patient support case study
As a specialist hepatitis nurse, patients are referred to me shortly before they commence treatment, and this is a time when they may have queries and concerns about treatment, which can have severe side-effects in some cases. The most beneficial approach is to offer patients the support of another person who has already been through treatment themselves.
My patients come from a wide range of countries and cultures, and speak a number of different languages. In some cases, patients speak only a limited amount of English, and prefer speaking their native language when possible.

In 2005, we decided to establish two separate support groups – one for English-speaking patients, and one for patients from the South Asian community, which formed a significant proportion of patients receiving treatment for hepatitis C at our hospital.
We identified two female patients to lead each of the groups. Both patients had successfully completed treatment and had expressed an interest in offering support to others. The support groups would aim to answer patients' questions from a peer perspective, while fully appreciating any cultural sensitivities.

The nursing team decided to host the support groups at the hospital and secured agreement from the head of department. It was agreed that, initially, the English-speaking group would be trialled as a pilot, and the Urdu-speaking group would take place based on any lessons learnt from the pilot.

The team went to great lengths to publicise the support groups, speaking to all their patients on an individual basis and posting flyers advertising the groups throughout the outpatient area of the hospital.

Despite the team's efforts, the first support group meeting was not a success, with only one patient attending, in addition to the lead patient we had identified in advance. Patients receiving treatment at the hospital came from a wide geographical area, and the team believed that patients were reluctant to attend due to the large distances they needed to travel.

Establishing a buddying scheme
Although the support group had not been a great success, the team still believed that patients should have access to peer-to-peer support, if desired. We felt this was particularly necessary for South Asian patients who did not speak English fluently, as they would not be able to access other forms of support, such as websites, so readily.

Shahnaz (the South Asian patient we had chosen as lead) had a detailed understanding of the virus and its treatment. As well as having been through treatment herself, Shahnaz had acted as a translator for her Punjabi-speaking husband when he underwent treatment a couple of years later.

The nursing team firmly believed that the obstacle in establishing support groups in the first place had been the distances people would need to travel to attend. To overcome this, we consulted Shahnaz to see if she would be happy to offer support on a one-to-one basis, as she had for her husband. The team decided to trial a system where patients could be put in touch with Shahnaz to discuss any concerns they had with her over the telephone. As a fluent speaker of Urdu and Punjabi, as well as English, Shahnaz could communicate with the other patients in the most appropriate language.

What has been achieved?
To date, we have made it possible for 10 patients to speak with Shahnaz about their treatment issues, and have offered the opportunity to many more patients who speak Urdu and Punjabi. Of course, we always check with Shahnaz in advance that she is happy to be contacted, and brief her on any specific questions or topics that may be raised.

Generally, the conversations simply involve the discussion of treatment and the best ways to manage any side-effects. As current research indicates that hepatitis C is more prevalent among the South Asian community, it is not uncommon for patients to have heard horror stories about distant friends or relatives' experiences of treatment. While the treatment can sometimes have significant side effects, it is important that patients are not put off treatment due to excessively negative reports.

There are no fixed rules in terms of how often buddies are expected to speak. While in some cases, patients are suitably reassured about treatment after one conversation, others are grateful for the opportunity to speak to their buddies as the treatment progresses.

The team also recognised that other sensitivities, aside from cultural differences, may prevent some patients from attending a "public" support group meeting, and they may prefer to speak to other patients on a one-to-one basis. For example, we are in touch with two separate female patients who both have high-profile jobs. They share concerns about discussing the virus in a public setting through fear that it may have a detrimental effect on their careers. We have offered these two patients the opportunities to act as "buddies" and support each other through treatment.

Due to the nature of our work, we learn a lot about the backgrounds of our patients (around 120 per year). Rather than using a database to pair patients, we match them based on personal attributes that we remember about them. For example, patients may be paired because they have similar jobs, such as a counsellor and a social worker, or if they are a similar age or share common interests or personality traits.

[[Practice pointers]]

1. Health Protection Agency (HPA). Hepatitis C in England 2007. London: HPA;2007. Available from:
2. NHS Choices. Hepatitis C awareness. Available from:
3. National Institute for Health and Clinical Excellence (NICE). Peginterferon alfa and ribavirin for the treatment of mild chronic hepatitis C. Technology appraisal guidance 106. London: NICE; 2006. Available from:
4. Joint Formulary Committee. British National Formulary 56. London: BMA and RPS Publishing; 2008.

Colleagues and the public can visit the NHS Hepatitis C awareness website:
The website features videos on the prevention, diagnosis and treatment of hepatitis C with people who have lived with the virus. For healthcare professionals, there are downloadable versions of the resources as well as a film where GPs and other healthcare professionals speak about essential information on the transmission, diagnosis and treatment of hepatitis C.

Colleagues and community health professionals can also direct parents and patients to the freephone Hepatitis C Information Line for further information and to ask questions about hepatitis C. It is open seven days a week from 7am to 11pm:
T: 0800 181 4114 (textphone 0800 0850859)