Creating an accessible online space for people who inject drugs
Our research highlighted a lack of online support for people who inject. Here’s how we’ve helped plug that gap.
Thanks to Tyler Gindraux, Martine Gallie, Eliot Hill and Matt Johnson for contributing to this article.
Needle and syringe services were first introduced by the UK government in 1985, offering free injecting equipment to people who inject drugs. This was a well evidenced harm reduction strategy that lessened the negative impact of drug use both physically and socially, preventing diseases such as HIV, viral hepatitis and tuberculosis.
These services now support individuals who are not only using psychoactive substances like heroin and cocaine, but also steroids and other hormones.
The impact of the pandemic
Drug and alcohol services have radically shifted their approach to support in response to the COVID-19 pandemic, with the vast majority moving to online or telephone support.
But needle and syringe services rely on physical locations where people can pick up new equipment.
Although the pandemic has increased the risks to people who use drugs, it’s also led to fewer people visiting needle and syringe services.
When the first national lockdown began in March 2020, the number of people visiting pharmacies or specialist services for new syringe packs went down by 50%.
How we responded
We asked ourselves:
- How have our drug and alcohol treatment services adapted during lockdown and what can we learn from this?
- What opportunities are there to make our harm reduction offer more accessible during the pandemic and beyond?
To explore these questions we talked to people who work in our needle and syringe services, some of whom have lived experience. We learned more about how frontline workers record data, offer advice, and distribute equipment in our services.
We also talked to the people who use our services over Google Meet, Whatsapp or phone calls.
These conversations helped us understand the context around attending needle and syringe services. Even before walking through the door, emotions like shame, embarrassment and worry throw up barriers to attending. People worry about what will happen when they arrive. Will someone they know see them walking inside? What information will they need to give, and what will they be offered?
One of the people we interviewed said:
“My brother himself, his wife knew, but his wife’s family never knew what he was doing. And one of his fears was going to the needle exchange and his in-laws would walk past.”
We heard again and again that our non-judgmental approach is what motivates people to come back. Building relationships with frontline workers helped people trust the advice we give:
“There will be times when it’s in-out in a couple of seconds. But as you get to know the person they’ll stay longer and longer and you’ll have more chats with them.” (harm reduction worker)
While many people feel confident about the advice they can get in services, people who inject steroids (or other image and performance enhancing drugs) tend to look elsewhere for the information they need. This highlighted the need for our services to build expertise so we can offer this group the same level of support other people expect from With You.
We also discovered that there was a lack of accessible online resources for people who inject. We ourselves had limited information on our website for this audience, and this was reflected in the low number of injecting drug users accessing our webchat support.
Putting our findings into action
Following our research we looked at a couple of ways to improve our needle and syringe service offering.
First we piloted needle and syringe click and collect services in five locations around the UK. This allowed people to order online and collect their equipment from a local service. While this had some success on a local level, it didn’t have the reach we knew we wanted.
At this point we decided to pivot and instead focus on helping people to find their local needle and syringe service.
We know that a harm reduction service needs to balance discretion with being easy to find. While our current service finder works really well for people looking for a treatment and recovery service, it’s not tailored for harm reduction.
We now have a needle and syringe service finder that only shows the information that people who inject drugs really need. It includes pharmacy services as well as those based in our drug and alcohol services. Anyone living in England (and soon Scotland, Wales and Northern Ireland) can now find the location of a nearby needle and syringe service with a simple postcode lookup.
Another part of our work was creating new content which speaks to individuals who inject. We wanted to make it as accessible and inclusive as possible. The first new page we published — on safer injecting for steroid users — is now our most-visited advice page.
We have kept true to harm reduction principles, which has meant using quite a different approach to the way we normally write content — using step-by-step instructions for how to inject into a vein more safely, for example, and including clear images with our naloxone advice. We have worked hard to make every page as simple practical and helpful as possible.
We spoke to people who had lived experience of injecting as it was important that the content sounded authentic. We had to be exceptionally sensitive to the people we asked to be involved. It was important for us to get the right information, but also be aware speaking about the topic can be triggering. Having an honest discussion before and a safety plan after talking with some subject matter experts was essential. Our work has always been trauma informed and this was no different.
Where next?
Finally, we know that a digital needle and syringe service does have the potential to help some of the people who use our services. So we’re reviewing our existing click and collect services to see if we might reshape the concept so it meets people’s needs better. We know people value anonymity and where click and collect doesn’t quite achieve this, a click and delivery might.
We wanted to make harm reduction more accessible. We have started with giving people the information they need and the means to easily find the right equipment. This is just the beginning for our online harm reduction work. We’ll be sharing more updates as we continue to create a safe space online for people who inject drugs.
To see our new safer injecting content and needle and syringe service finder, visit the With You website.
