In January the London Joint Working Group on Substance Use and Hepatitis C (LJWG) launched a new report on the case for a peer-based needle exchange in London – designed by, and run by, the people who know how these services can work best (see news, page 5).
Peers have lived experience of injecting drug use and use this to deliver education, services and advice on safer injecting practices to others. A peer-based needle exchange could still work with other services – such as drug treatment, health or housing advice – but would have this experience at its heart.
In 2020, 43 per cent of people who injected drugs reported sharing unclean needles and works, leading to a preventable rise in hepatitis C infections. This was the backdrop to LJWG’s idea to seek funding from Hackney Council as part of the national ADDER Accelerator (addiction, diversion, disruption, enforcement and recovery) project to explore how the idea could work in the London borough. If successful, it is hoped the service could become pan-London, and inspire similar projects further afield.
Service user voice
At the core of this research was a series of focus groups with people who inject drugs and peer workers, in order to build it around their experiences with current services as well as what they would want to see. Jason, a peer volunteer who has used services, said, ‘There were lots of ideas at our workshop, everyone had something to say and it was great to hear ideas. Why not have availability at night, or why can’t we have access at the needle exchange to other support – health, legal or housing?’
Needle exchange is vital to ensure that ‘the people who don’t get any service would get clean needles instead of just using what’s there’, Jason felt, but the peer side of it was important to him. ‘There’s a big difference between being given a needle exchange from a set worker and deciding what the service is yourself.’
Archie Christian, national training and volunteer manager for The Hepatitis C Trust, helped run the focus groups: ‘There was a real positive outcome in sitting down, hearing and understanding the experiences of people who are in that community,’ he said. ‘And they realised it wasn’t just one of those simple “tick box” exercises. That produced an enthusiasm – that they were listened to, that they were understood and that they weren’t judged. I believe we could develop a programme of services where everyone involved in the production and delivery of the services, or the majority, have lived experience. Our actual service users or peers that no longer inject are still working within that community. Giving people opportunities to volunteer and pathways into employment can be transformational.’
Bad experiences with existing services was a common theme in the focus groups, and in the work peers from The Hepatitis C Trust do generally. ‘Having individuals trained who are actually present on the ground in the communities can overcome a lot of the barriers that they feel are presented to them in terms of from discrimination from some pharmacists and feeling that what they’re doing is problematic,’ said Archie.
Nathan Motherwell, a Hepatitis C Trust peer who organises needle exchange services in Kent, finds the issues the London focus groups raised are commonplace. ‘I think the problems with needle exchange are across the board very similar. If people are going into a pharmacy needle exchange, sometimes there’s shame and fear and stigma attached to it – sometimes they’re not treated very well. Another barrier is people often get their methadone scripts from places where they would be going for exchange, and they worry they’ll be asked “are you using on top?”’
A peer-based exchange could offer a way to upend this model. ‘Peers working with peers don’t present the same sort of barriers to the community who use injection drugs’, Archie argued. ‘Because of the way society looks at them, they sometimes feel like they’re a burden. You don’t have that if it’s members of the community providing the service. There’s no judgement, no being condescending. You have an opportunity to do something different where the ownership of the service delivery is from the peers. You are taking a different approach of encouraging development, giving people responsibilities. They feel responsible, they grow esteem.’
There was emphasis in the groups on openness, Archie reported, as well as links to other services: ‘It should be community-based, easy access, no limitations on the amount people can receive. A holistic approach to the whole person and services that are provided. At the very least, the needle exchange, if it was mobile, could signpost to a community service user hub where there’s access to more care, more opportunity and more support.’ There could be an important role for such a hub in supporting people who leave prison with accessing a wide range of holistic services.
Peers, service users and commissioners offered different perspectives on how much data to collect about service users, but it was acknowledged that this should be light-touch to avoid discouraging people. Nathan suggested that, ‘if you want to increase the uptake, the fewer details you take the better because we want them to have clean equipment’, but ‘a very basic bit of info doesn’t really damage it’, such as their initials and date of birth – ‘the ideal needle exchange is just making it more available’.
The work has already led to some changes on the ground and if it works, it is hoped there could be scope to widen the approach. ‘We’ve seen that some things that have been mentioned in this process have led to changes from Hackney, and we’re talking about maybe a pan-London approach’, Archie said. ‘If we get the goodwill and the buy-in from the commissioners and the local health and justice services, and we look at treating this as a community and public health concern, we can make meaningful changes.’ This builds on existing work in New Zealand, Australia and elsewhere, he noted – ‘The report had lots of good examples of it working internationally.’
Elliot Bidgood is a policy adviser with the London Joint Working Group on Substance Use and Hepatitis C (LJWG).