The day’s second session heard from three different organisations who were putting lived experience at the heart of their activities.
‘The people who work for us are from the communities we work with,’ Gareth Balmer of the Fife With You team told the morning’s second session. ‘Some of our staff have even used with those people in the past, and they know their families. We’re a large organisation but we’re very proud of delivering a local service.’
A mostly prosperous and rural area of Scotland, Fife also had pockets of severe deprivation – among the worst in the country – along with high levels of problematic drug use and drug-related deaths. ‘We had seven deaths in ten days a couple of weeks ago,’ he said.
This meant multiple challenges for his harm reduction-based service, he said, including ‘huge’ levels of non-fatal overdoses, ‘benzo use through the roof’, high levels of femoral injecting and increasing crack use. Sixty per cent of clients were over the age of 40, he said.
Meeting people where they’re at
More than 50 per cent of his team now had lived experience of substance use issues, he said, with the service using vans to provide food, phones, sim cards and an access point for treatment and BBV testing. There was also a take-home naloxone programme and home-delivery service. ‘Unlike with fixed sites, we actually get into people’s homes, which makes a difference. A lot of our work is supportive – one guy we visited 42 times in a month, because he needed a lot of support. That was invaluable.’
The service also had a team of peer naloxone champions, and carried out extensive street-level outreach. ‘We’re not here to judge – drug use is part of our society. But it’s not all about harm reduction – we’re also a stepping stone to services.’ Although the situation had improved in recent years, there were still some high-threshold statutory services locally, he said. ‘So I see us as the fuzzy edge – because we’re super-flexible.’
Human connection
‘When I was thinking about what I was going to talk to you about today I decided I’m not going to talk about harm reduction or the deaths I’ve experienced among my clients – I’m going to talk about a human connection and what it really means to support people effectively,’ said Stella Kityo, founder of the women’s brand Soulgetic. ‘Change happens faster and deeper when we drop the “change” agenda. A lot of the work we do is based around trying to get people to change, and usually it’s the narrative of the services – not the individual and looking at what really works for them.’
Twenty years of working in housing support services had taught her that often women had ‘no narrative of their own’, she said. ‘The narrative they have has been built for them. Seventy per cent of women selling sex describe themselves as homeless. We have a woman who told us recently that her only way off the street was death, jail or a hospital. If that’s your life and that’s your viewpoint, it’s hard to move forward.’
Hidden homelessness was a huge issue, she said. ‘Sofa surfing, staying in A&Es, transport terminals, 24-hour establishments and engaging in survival sex-working. I’ve done outreach in Brixton for the last five years, and our women get through what they need to get through with drink and drugs.’
After leaving home at 16 because of a ‘toxic relationship’ with her parents she’d found herself homeless, the told the conference. ‘I found myself rough sleeping, sofa surfing and in situations I never thought I’d be in. And I wonder if I’d approached services at that time would they have deemed me a “complex needs” woman?’
When she’d first gone on outreach in areas with high levels of street sex work she’d asked her colleague where are all the sex workers were. ‘I said, “I can’t see anybody”. I was expecting the lady from Pretty Woman with a short skirt standing on a street corner. Instead what I saw was women in tracksuit bottoms and jeans. And you couldn’t connect with them, because they were so used to people like me coming in and out of their lives talking about how they were going to change their life. It doesn’t work that way.’
Endless cycle
The lives these people lived were indeed complex, but that ‘doesn’t take away from who they are’, she said. ‘We have women who have issues accessing healthcare, barriers, stigma, judgment, mental health issues, dual diagnosis. Sometimes they have to walk in front of traffic to get the help they need, and even then they’re released back out to repeat the same cycle again. I get tired of referring women to places that are not going to support them effectively. We create the narrative for people – “difficult”, “aggressive”, “manipulative”, “uncooperative”, “non-compliant”, “high risk” – that’s a big one on referral forms. So we’re not really listening, are we?’
She’d seen numerous clients die over the years and witnessed the same cycle again and again, she said. ‘Have we really listened to what the client wants? We get so wrapped up in arguments about things like abstinence and maintenance that we’re missing the human standing in front of us. Have we examined our own biases?’ Co-production needed to be genuine, she said. ‘Is it for our organisation, or the people we’re supporting?’ Safer environments designed by and for women were vital, and collective energy was powerful. ‘All of us have a voice, and all of us can make a change – through being human.’
Trust and respect
‘If you can name it, you’re pretty much going to find it in our staff and volunteer team,’ said Sarah Omara of Red Rose Recovery. ‘Out of 120-plus staff, 97 per cent have lived experience of multiple disadvantages. That’s because we believe in people and their capacity to change. We’ve built a community where every voice is heard.’
It was a community where people seeking treatment had a say in how it was developed and how it worked, she said, and where learning was shared. ‘We’ve formed excellent relationships with our commissioners, and it’s built on trust and respect.’ It was also a model that was sustainable and could be replicated elsewhere. ‘I wouldn’t be alive today if someone before me hadn’t reached out a hand and shown me the way. It’s our responsibility to pass on what we’ve learned to empower other communities, and we have a responsibility to invest our resources in other grass-roots organisations.’
‘When I heard the word “leader” I always thought of people like Stalin or Hitler, but a leader is really somebody who serves the people they lead,’ said her colleague Rolonde Bradshaw. His team had started picking up litter, ‘serving our community’, he said. ‘That’s what we did in the beginning – we picked up litter and tried to be nice to people. It’s gone from being a once-a-week litter pick to nine regular activities every week – cooking groups, gardening groups, guerrilla gardening. It’s developed, and people have seen value in what we do.’
After recently mending some fishing platforms on the local river, a community group got in touch. ‘I went to see them to tell them what we do and they asked me to leave the room for a few minutes. I thought they were going to give us a couple of hundred quid, but they called me back in and said, “We want to give you £4,700.” So demonstrate the value, and the resources will come.’
Watch the video footage of session two here: