Archie

What is your current role within The Hepatitis C Trust?

My role within The Hepatitis C Trust is to develop, deliver and write our training packages. These are used with our own staff, volunteers, and staff in services that we work with. As well as hepatitis C, these incorporate other blood-borne viruses (BBVs) including hepatitis B, A and HIV. Although we are a hepatitis C patient organisation, the impact of all of those conditions affect the same community. We see it as an opportunity to widen the education training and delivery that we give. It is crucial that we raise the general awareness of BBVs as a whole, because that’s the only way to address the perceived stigma and actual discrimination that occurs within the patient group when they engage with services.

Can you expand more on the Trust’s peer support and the role of volunteers within this?

Across most of the Operational Delivery Networks (ODNs) in England, we’ve gone into various communities, and have at least one peer support worker in each area. They recruit peer volunteers, who are patients from the community to support them. Now we’re finding, especially during the Covid-19 pandemic, that we’re no longer just a patient organisation – we are a community right across the nation.

In the past 12 months we have trained close to 150 peer volunteers to be peer mentors in the community. These volunteers have either had hepatitis C or tested positive for antibodies, meaning they had come into contact with hepatitis C. Because over 90% of new infections come from the sharing of drug injecting paraphernalia, this means these peers have previously, or are still, using drugs.

The impact of being diagnosed has a negative influence on your self-esteem. You feel dirty, you feel worth less. So we provide support for volunteers to acknowledge that they have this condition and to recover from any internalised stigma. Through this, they begin to understand that it’s just a medical condition with a simple cure. The volunteers are then eager to carry those messages back into the community and make changes. However, that unfettered enthusiasm needs to be channelled in a structured way. So, we give them really good training.

It becomes quite rewarding to see the growth in confidence and self-esteem when volunteers start engaging with projects. Through their work with us, they are a catalyst for positive change in the community, and so we don’t emphasise too much or stipulate ‘you’ve got to be drug free’. Our primary concern isn’t to have them change their behaviours. Although, it does happen and people think ‘I don’t necessarily have to do this’.

Why does the Trust use volunteers in its peer support work?

Services and clinicians, at times, still call the patient groups that haven’t been engaged with yet ‘hard to reach’. Actually, they’re not hard to reach. You can walk out to any high street in your town and see the people affected by the risks associated with hepatitis C. They are visible and easy to reach. Instead, it might be more accurate to say they are under-served and, at times disengaged, due to a variety of complex reasons.

Although a lot of our staff have in the past led very similar lives to the patient group we are targeting, they are now in a very different position, which can mean the patient group might feel a less clear identification with them. So the volunteers who are much closer to that lifestyle, act as the bridge to overcome any barriers of relatability.

Again, the volunteers are the ones who are better equipped to address misconceptions and they’re the link between the patients and ourselves and we’re the link to the clinicians, hospitals and the NHS trusts. So we need that multidisciplinary approach. We’re fully aware that there is a cohort within the patient group who prefer the more clinical setting, nurses and doctors. So having a mixed model means we can address all the barriers that exist.

What do the volunteers themselves get out of their volunteering?

The Trust has a lot of experience now in delivering accreditations to volunteers with limited to no academic backgrounds. We’ve actually delivered in the region of 70 accredited awards in health and social care to a patient group who thought they wouldn’t be able to access that. Moving forward, we aim to continue doing that.

The reason for this is that we’ve always been aware of the fact that we can’t give remuneration to peers. So, we decided to develop something that’s worthwhile and rewarding for them. The fact is, the self-esteem that they get from giving and helping others does lift them, but they need something more tangible to enable them to move along the pathway to a better way of living.