Recovery Worker’s perceptions of the barriers to Hepatitis C testing
In our determination to eliminate hepatitis C within drug and alcohol services nationally by 2025, it has become clear that advancements in resource, momentum and innovation have driven our effort. However, it is also clear obstacles remain. In particular, both reaching and maintaining a level of testing which evidences micro-elimination. In order to reach this goal considerable numbers of tests will need to be carried out by whole teams.
We recently took the opportunity to explore recovery worker’s perceptions of the barriers to testing to better understand what challenges remain, and therefore, what the potential solutions might be.
Barriers
All recovery workers acknowledged staff lack of confidence, lack of education or fear were barriers to testing with the majority identifying the need for training. Some identified peers as highly effective trainers where passion and making the subject feel important were vital to gain their buy in.
“I did like it when the Hep C Trust peer was sharing…it was very well executed. Lived experience and delivery is important. He was really passionate…he made it feel important.”
Regarding day to day tasks many stated testing was important but admitted it was much lower down their list of priorities in comparison to managing other risks, especially with a high caseload/workload.
“For me, I know it should be a priority, but it’s all scary, I don’t prioritise it. If I’m honest it’s one of the last things I think about.”
“I’ve kind of fallen out of the habit of asking if they need it…I’ve just forgotten to do it.”
Some acknowledged personal and service user frustration at repeatedly offering testing.
“Sometimes they get upset about you asking them again. Sometimes I get frustrated too, it’s like how many times do you want me to ask them?“
Some disclosed their own anxiety around testing and feeling ‘out of the habit’, whilst others stated they lacked the opportunities to do it if a BBV lead did the majority of testing. Additionally, for some there was a confusing cross-over of roles within services and sometimes testing was seen as a primarily clinical intervention. Infection control risks were mentioned by two recovery workers with one being concerned about their personal risk of infection and another being concerned about the safe disposal of clinical waste in the community.
“I get a bit worried about other peoples’ blood. I’m not from a clinical background. It might be about me being more proactive, there’s a cross over in roles. I wonder if it’s more me and my confidence, or that I accept that it will get done by someone else. I don’t get an opportunity sometimes because other people do it.”
It was also perceived that service users can experience fear and anxiety and some may not have the knowledge as to why they might require testing or awareness of the newer treatments. One recovery worker suggested services users might decline being subjected to too many interventions in one appointment. Stigma and readiness to engage with treatment was suggested to be linked with the motivation to accept testing.
“One service user needed advanced notice because they said they felt like a lab rat with us doing so many interventions.”
Covid-19, the lockdown of services and the subsequent decrease in footfall were strongly felt by the recovery workers to be barriers. Recovery workers spoke of lack of outreach and advertising the testing offer being factors, as well as lack of money and restrictive policies. They felt lack of discussion and focus on testing in teams and mixed messages from management about what to prioritise played a role.
“The sole barrier at the minute is trying to get service users through the door.”
Solutions
The recovery workers identified key solutions to the majority of barriers which covered four themes – education, resources, culture and organisational processes, shifting focus. The staff wanted inspirational education, strategically placed leaflets, peer support, flexible resources (vans/vouchers/food/transport) and a focus on outreach. Flexibility, consistency, having a lead, patient flow, routine testing, wrap-around services, community support and team cultures were mentioned throughout.
“Social aspects of teams can fuel changes in practice. Working with great teams. Good community networks.”
One recovery worker expressed how we needed to proactively target service users who attended the needle exchange.
“I gave hep c info to needle exchange clients…we don’t reach them very well and we don’t use opportunities like that often enough. You’ve only got that moment to engage someone…they’re in a rush, we’re in a rush.”
It is clear from the barriers observed by recovery workers that complexities remain in accomplishing high rates of testing to reach and sustain micro-elimination. However, despite the barriers, recovery workers saw multiple parallel solutions and if we want to reach our joint objective we have a duty to listen and be responsive.
Written by Deanne Burch, Hepatitis C Elimination Coordinator for Hep C U Later
With special thanks to the recovery workers who took part for their valuable insights