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Providing Support for Hepatitis C Patients

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Opal Greyson, clinical nurse specialist in viral hepatitis at the Royal London Hospital, has developed a “buddying scheme” to match hepatitis C patients from similar backgrounds

Aim of the Scheme

The overall aim of the scheme was to ensure patients successfully completed treatment, by providing bespoke support. Key audiences included:

• Patients who do not speak fluent English
• Patients who do not live near the hospital
• Patients who are reluctant to publicly discuss their hepatitis C status

How was the project carried out?

Patients are referred to Opal shortly before they commence treatment. This is a time when patients may have queries about treatment, which can have severe side-effects. Patients can benefit from support from somebody who has already experienced treatment.

Opal’s patients come from a range of countries, and sometimes speak only a limited amount of English. Opal recognised the need to provide services tailored to the individual needs of patients.

In 2005, it was agreed that the nursing team would establish two separate support groups at the hospital, 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 the hospital.

The English-speaking group was to be trialled as a pilot initially, and the Urdu-speaking group would build on learnings from the pilot. Opal identified two former patients to lead each group.

Despite publicising the support group, only one further patient attended the first meeting. Patients receiving treatment at the hospital came from a wide geographical area, and the team believed that patients were being dissuaded from attending due to the potentially long journeys to the hospital.

Establishing a Buddying Scheme

While the support group had not worked as planned, the team still felt patients should have access to peer-to-peer support. 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.

The South Asian patient whom Opal had identified previously – Shahnaz – had a detailed understanding of the virus. As well as having undergone treatment herself, Shahnaz had also acted as a translator for her Punjabi-speaking husband when he underwent treatment.

As the team believed the obstacle in establishing support groups had been the distances people would need to travel to attend, Opal asked Shahnaz whether she would be happy to offer one-to-one support 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 was achieved?

Over two years, Opal has facilitated the opportunity for ten patients to speak to Shahnaz, and has offered the opportunity to many more. Opal always contacts Shahnaz in advance and briefs her on any specific topics that may be raised.

Generally, the conversations involve the discussion of treatment and managing side-effects. As current research indicates that hepatitis C is more prevalent in South Asian countries, some patients have heard horror stories about distant 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.

In some cases, patients feel suitably reassured after one conversation. However, others like to speak to their buddies as treatment progresses. Due to a shared cultural background, patients are sometimes more receptive to what Shahnaz had to say about the virus and its treatment than they are to healthcare professionals.

The team recognised that other sensitivities, aside from cultural differences, may also prevent some patients from attending a ‘public’ support group. For example, two patients, who both have high-profile jobs, had concerns that speaking publicly about how the virus may negatively affect their careers. Opal has offered these two patients the opportunities to act as ‘buddies’ through treatment.

Due to the nature of her work, Opal learns a lot about the backgrounds of her patients, and will pair patients based on personal attributes, for example because they have similar jobs.

Over time, Opal has paired a number of patients who are not from the South Asian community. However, as it is an informal scheme, there is no conclusive figure on how many ‘buddy pairs’ have been formed.

Key Learnings

• “Support groups don’t work for everyone”
While it is necessary to ensure patients have access to appropriate support, traditional support groups are not always effective. A number of factors, including cultural sensitivities and geographical distances can act as barriers to the success of support groups. Buddying schemes can act as an appropriate alternative, and in some case can provide a greater level of support.

• “Good nurse-patient relationships are key”
The buddying scheme is predominantly reliant on nurses building a good relationship with patients. Through this relationship, the team can pair appropriate “buddies” and secure the support of former patients to buddy new patients.

Future Work

Opal feels the buddying scheme has successfully improved the level of support available for patients. In the future, the team aims to build on this success by partnering more patients, specifically those from backgrounds where traditional support groups may not be the most appropriate.

For further information, please contact Opal at Further examples of hepatitis C best practice are available at

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