Making progress on stigma means taking a long hard look at our own sector. Are we prepared for the challenge, asks DDN.
‘Millwall fans used to sing “no one likes us, we don’t care.” That’s how it feels to live with a substance use disorder, and I should know after 25 years of opiate addiction. I identify as being in recovery and have done for many years, but I remember.’ Tim Sampey is CEO of Build on Belief (BoB), a peer-led charity that’s developed a dynamic and interactive form of mutual aid. He is also a founding member of the Anti-Stigma Network (ASN). Sharing his story focuses the mind; it’s one person’s history, but it represents the isolation of many.
‘I pretended I didn’t care, but of course I did. Shouted at in GP surgeries, people standing rather than sitting next to you on the bus, never meeting your eyes in a shop. Judged, despised, and marginalised for something I didn’t understand, couldn’t control and which was, slowly inch by inch, killing me. How could I challenge my own self-hatred when the whole world seemed to make a point of agreeing with me? I might have been permanently stoned, but I still had feelings.
‘Of course I committed criminal acts – people like me do. It’s the only way to feed the monster, but it never felt like a choice, nor was it something I was proud of. My substance use disorder was a health problem and not a criminal one. I have watched my community die for decades – overdose, suicide, underlying health problems and simple self-neglect. I’ve had enough.
‘I’ve worked with LEROs and service providers for 20 years. I’ve met hundreds of kind, compassionate, caring people who want nothing more than to do the right thing. I would suggest it’s time we collectively stood together and challenged this absurd stigma for once as for all.’
So here we are, a diverse group calling ourselves the ASN, keen to challenge. We’ve been putting our heads together for the best part of a year now, gathering resources, discussing a campaign, listening to everyone who’s got in touch with us. We know we’ve only started to scratch the surface – but to change hearts and minds we need you to get involved.
Breaking out
‘For many years the sector has been discussing the issue of stigma, how it impacts people who use our services (and the people who don’t), the staff that work in them, the funding we’re given and the communities we work in,’ says Karen Biggs, chief executive of Phoenix Futures and the network’s chair. ‘We’ve tended to do that within our own huddles – our own localities or modalities, our own stakeholder groups or interest groups. When I first started to discuss the idea of the Anti-Stigma Network, someone asked me how ready I thought the sector was to look at itself. How ready were we to identify, and have identified to us, the thoughts, attitudes and behaviours held by us all that inadvertently stigmatise?
‘And that made me think of those huddles we’re in, or sometimes we’re put in, or we put others in. And how hard it is to break out of them, take time to listen and think hard about how we communicate so we’re understood.’
Ambition for change
The university environment demonstrates the scale of the challenge – and also the potential for progress. Universities often reflect their communities very poorly, with under-representation of non-white people and those from working class backgrounds, Prof Harry Sumnall of Liverpool John Moores University tells us. This carries through to senior roles and the academics who lead research groups and set research priorities – and representation can be even harder in the drugs research field, which is small compared to other disciplines.
‘But there’s been a real ambition for change in recent years in the ways that affected communities and those with lived experience are involved in research processes, including setting research priorities and questions, delivering research activities, and helping to interpret and disseminate findings,’ he says. ‘Researchers have also been encouraged to think about how they can work with communities to assess impact, and how affected groups can be empowered to use research findings to support their own activities. I was particularly pleased to see the recent guidelines from the University of Bristol and Transform on research around drugs issues, including the people who use them (https://transformdrugs.org/publications/best-practice-guidelines-for-research-around-drugs-issues).’ He recalls other initiatives – a model of peer research involvement developed by the Scottish Drugs Forum and community expertise at the Sheffield Addiction Recovery Partnership.
‘This is not perfect of course,’ he says. ‘But it does reflect at least an ambition to move away from the old model whereby researchers would “parachute” into a community, collect their data, and then disappear afterwards to enjoy the prestige of publications and conference invitations.’ Most universities and large research networks have now established community groups to help with engagement and involvement, he adds.
Generosity of spirit
Effective engagement is the perpetual challenge, agrees Danny Hames, who is part of an NHS foundation trust as well as chair of the NHS APA. ‘How do we as a sector view ourselves and engage with the broader healthcare community? How do we work with, and alongside, these broader health services to address stigma?’
He calls for a ‘generosity of spirit’ and an acknowledgement that many healthcare colleagues have minimal training in addictions. Mental health clinicians are often working in a crisis – there’s an opportunity for us to ‘come alongside our colleagues in the NHS’, understand the challenges, see what we have in common and offer the lived experience perspective. ‘We’ve got this potentially bigger workforce working across mental health roles – they need us as a sector to wrap around and support them,’ he suggests. If we can ‘take the currency we’ve built in the drug and alcohol sector and start to nudge others we connect with’ we can create opportunities for change.
Through the ASN we talk about reaching beyond drug and alcohol services to all those people who use drugs and alcohol have contact with – health, mental health and support services, criminal justice agencies, local authorities. We recognise that the people who need those services the most won’t engage if they feel ‘looked down on’, whether that’s because of how they’ve been treated or talked to, or because of the environment – such as a health service that looks more like a police custody suite. Consequently, having drug and alcohol specialists contribute to service design, delivery, strategy and action plans is crucial. Many organisations want to become more culturally competent around stigma but don’t yet have the workplace skills and knowledge. We can help fill in the gaps, while learning ourselves.
Public Debate
Adfam have been a rich source of knowledge where families are concerned, informing us about the entrenched stigma they experience. In many cases the stigma directed at them by neighbours, colleagues, services and the media was compounded by their own family and friends. Guilt, self-blame and low self-worth silenced them and reinforced their isolation. Even their grief at losing a family member was not acknowledged or validated in the same way as a ‘regular’ death. ‘We must take collective encouragement from the progress made with mental health over recent years, and how mass media campaigns have successfully encouraged public debate on this topic, making it easier for people to talk about what they’re going through and to reach out for help,’ suggests Robert Stebbings, Adfam’s policy and communications lead (DDN, Dec/Jan 2024, p12).
It’s all too easy to shelve the topic of stigma – to tuck it away until the policy document needs writing or to shrug off opinions that don’t align with our own. But let’s be brave with the conversation and take it to new territory. As Tim Sampey says: ‘I have spent my entire life watching the only community I ever had die year on year. Perhaps we need to be brave and stick our heads above the parapet. Enough now. They were our brothers, sisters, mothers and fathers, our children. They deserved better. Perhaps we should fight for them, or their memory.’ DDN