With hepatitis C still massively under-prioritised, DDN hears how The Hepatitis C Trust’s testing van is taking services out on the road.
‘It probably adds up to a few months every year,’ says Hepatitis C Trust outreach officer Jim Conneely of the time he spends travelling the country in the trust’s testing van. ‘It’s exhausting but I enjoy it. When people are really pleased to see you and you’re helping out the local nurses it makes it worthwhile.’
The service launched just over two years ago (DDN, November 2011, page 19) with the aim of reaching those at risk of hepatitis C but unable, or reluctant, to access testing. The brief is to cover the whole of the UK, visiting drug services and hostels, as well as community centres for people from high-prevalence countries. ‘Some places have excellent services for hep C, so it’s pointless us going there,’ says Conneely. ‘Whereas other places really need a boost.’
Clients are offered a mouth swab test to determine the presence of antibodies that show if they’ve ever had the virus – but not if they currently do – with the results available in 20 minutes. If this proves positive, blood tests will then need to be carried out to determine if the person has the virus now. Everything is confidential, and so far more than 1,400 people have been tested in the van, of whom around 100 have identified hep C antibodies.
‘I was recruited specifically for the role,’ says Conneely. ‘The funding to initiate the van was through the Department of Health, so the trust bought it, equipped it and recruited me because they wanted someone with a clean licence who’d had hepatitis C. I’d worked in drug services for years and I just jumped at it.’
Properly publicising the visits in advance is vital, he stresses. ‘You can’t just turn up somewhere. There’s only me to organise it so I have to do the back office stuff, the database and the event planning.’ Before a visit, the trust will email posters to the venue, talk to substance misuse staff and make sure there are clear pathways in place for people who test positive.
‘We get nurses coming in and local GPs with an interest in hep C come along as well,’ he says. ‘We try to get out a couple of days a week and we’ve been pretty successful at doing that, depending on where we are, but there’s one van for the whole of the UK so we tend to go where people have requested us to go. Plus everything’s so localised now that people don’t know what’s happening 30 miles away – we’ll find great practice at one place and then you go down the road and they’re completely ignorant around hep C. The gaps in provision are crazy, but we’re trying to target those.’
The first step is to take clients through the basics, he says, explaining the risk factors and finding out if they’ve been tested before. ‘If they have and they’re positive in any way it’s pointless me testing them – as the test I do is just an antibody test to show they’ve been in contact, they’ll need a blood test. I’ll go through all the risks with them and, if they’ve injected, it’s “get yourself tested”. Everyone’s at risk who’s injecting, but you also get the worried well coming in – I won’t put them off because I also believe that some people won’t say why they need a test.’
There are two people in the van wherever possible, he explains. ‘Sometimes it’s just me, depending on whether there’s help at the project, but if you get a queue of people you’ll need one person doing the testing and one on crowd control. We’ve never had any hostility – maybe local drug dealers occasionally, but once people realise we’re not the police it’s usually fine.’
Inevitably, some clients can react badly to a positive result, he says, which means a proper discussion before the test is vital so people can understand the implications as well as establish in advance if key workers and GPs can be informed. ‘Their GP might want to know what tests we did, so I write letters to the GPs and I also like to contact people after, but I won’t do that unless they specifically give me their consent.’
Consent can be a tricky issue with the client group, however. ‘You need to be careful,’ he says. ‘Consent is a judgement call with people who are drinking and taking drugs, so it’s about whether I can have an ordinary conversation with them, regardless of how much they might smell of alcohol – you just have to judge it. Strictly speaking you could say, “I can’t talk to you, you’ve been drinking”, but we live in the real world and if people are drinking every day then that is their real world. It doesn’t mean they’re not able to communicate and give consent, but it’s crucial they sign the consent form – we won’t do anything without that, because we’re doing things with people, and any time anyone wants to pull out, that’s fine.’
Since the service launched, however, awareness raising and sharing information has come to be as important as the testing itself, he explains. ‘I wouldn’t say hep C’s complex, but people can still be unclear, plus a lot of what we’re doing is just helping to destigmatise it. People see the van with “Hepatitis C Trust” on the side in huge letters, and it’s, “some people have got hep C, get over it”. It’s helping to debunk some myths as well. It’s a blood-borne virus that’s difficult to catch unless you’re doing things that involve your skin being pierced. I remember saying I had hep C and it was, “Well, you’d better have your own cup now” and all the rest of it, but rehabs used to be like that. But the fact that I’ve had hep C and was using drugs until about 20 years ago is really helpful because it means I can communicate with people.’
The Department of Health funding is due to run out in April, however. What happens then? ‘Black hole scenario,’ he says. ‘But it is a front-line service so hopefully we’ll be able to find some funding sources. What we’d really like, rather than us doing this, is to get the local authorities to do it, because it makes economic sense and hep C is a public health issue. At the moment everything’s in a state of flux but it would be crazy to not fund an essential service, so we’ll just have to find a different way to do it.’
A lot of services do offer testing themselves though. ‘They might offer it, but do they actually do it?’ he says. ‘There’s world of difference. “Do you want a test? No, alright then” – then they’ve offered someone a test. BBV provision has been going downhill because it’s expensive and it’s a marginalised group. You’re even seeing contracts pulled from the mobile needle exchange services now – really successful services working with the street homeless. So if you’re not getting funding for services like that you do worry about hep C testing because there’s no immediate impact, whereas take away the needle exchange vans and straightaway you’ve got needles in the parks and so on.’
One thing that could ‘massively improve’ matters would be a greater focus on peer support, he stresses. ‘There seems to be a large hidden cohort of people who’ve been tested but then nothing happens. I hope that’s what we’re going to target next and we’re involved in a research project to try to get some evidence that people who have peer support get better outcomes. It does seem to be catching on that if you train the peers up they can support people to go and get the appointments for blood tests and follow-ups, and maybe get a support group in place.’
He’s adamant that this shouldn’t be staff-led, however. ‘That’s why we’re having this big push to try to get peers trained up so they do know what they’re talking about. People who have experience of drug use and having the virus are really helpful, because they’re listened to. A staff member in a rehab or drug service doing a talk – together with every other thing they’ve got to deal with and get across – isn’t going to get the information out so that people take it in. Peer intervention is key.’
Another crucial aspect is that if people ‘face up to their BBV status then they’ll maybe face up to their recovery status,’ he says. ‘One of the things that we’ve really noticed is most people who use drugs think they have hep C. But a lot of people haven’t got it, so we’ll say “why are you doing stuff to put yourself at risk?” No one wants to walk around paranoid thinking you’ve got a chronic illness when you haven’t, and you get all sorts of scare stories as well. So it’s about getting the truth out.’
To arrange a visit email Jim.Conneely@hepctrust.org.uk