Creating an informed and inclusive dialogue is our only chance of crushing stigma, heard the NHS APA conference. DDN reports.

‘My addiction, my mental health, the stigma that I was going through and my family was living through – it was unbearable, and the despair that was associated with it was deeply painful, but I wanted to recover… So after my detox I went to a local rehab and it gave me a space, it gave me an environment where I could start to get better and rebuild my life.

‘But I had loads of challenges – challenges to do with my identity, challenges to do with race and racism and discrimination… I put up with a lot of abuse because – why? Because I could. Compared to what I put up with back on the streets this was nothing. But to get it every day on top of my recovery, on top of the issues I’m dealing with – shame, stigma, trauma…

‘I was not going to walk out of that treatment facility, I was going to put up with it. But that left an impression on me and I started to figure out, why is this happening if this treatment facility rehabilitation is for everybody? Why isn’t it working for me?’

Sohan Sohata is now the highly respected leader of the Alcohol Race Alliance. Twenty-five years ago it was a different story, as he explained to the NHS APA’s conference on tackling stigma in addiction services.

Lived experience

With a strong thread of lived experience right through the day’s event, the NHS APA urged the sector to come together to address the issue, which was contributing to the highest number of drug-related deaths since records began. ‘It’s the one of the most significant things we need to overcome and address if we are truly going to ensure that people negatively affected by addiction receive the respect, the dignity and the treatment they deserve,’ said NHS APA chair Danny Hames.

Dame Carol Black’s independent drug review had highlighted the need for urgent improvement of the sector, and in a keynote speech she explained that tackling stigma was a central part of this. ‘I really believe that if the government implemented this review it would reduce stigma,’ she said. ‘It would ensure that drug dependency is treated as a chronic condition, that it has parity with other chronic health conditions, that we invest in treatment and recovery, that we give back to the workforce its aspiration, invest in it, develop it. And all of those things I believe strongly would reduce the stigma which is so relevant and prevalent when we think about drug dependency.’

It was like mental health was many years ago, and we’d been on a ‘huge journey’ there. ‘Mental health was stigmatised, we didn’t talk about it and swept it under the carpet. It took a major campaign, Time to change, but it also took individuals being prepared to talk about it,’ she said.

Talking to people who used services as part of her review, Dame Carol was left with the impression that, ‘wherever they went they were not really treated as normal people in the health service. That came through extremely strongly that they didn’t feel at all that they had a voice.’

Peer support

So with that in mind, the conference invited people to talk about their experiences of stigma and the impact it had had on them. Mel Getty and Paul Lennon had been motivated to set up the Aurora Project, a peer support service in South London, to make sure others did not suffer the stigma – the feelings of worthlessness and ‘somebody being disgusted at you’ – that they had both experienced when accessing treatment.

‘We always wanted to try to build into the design of Aurora that we felt there was a welcoming place,’ said Getty. ‘We were trying to make it feel like a home from home for everybody else in the design… the way that we welcomed people and whether people felt free to walk around the building and go and get a cup of tea or do what they needed to do and get support.’

Different perspectives

Mark Holmes, now a senior drug and alcohol recovery worker at Kenward Trust, gave two different perspectives of stigma – one from when he was in active addiction and a recent one from working in the field. Working as a dancer, performing in the West End and Broadway, he was forced to retire through injury and began working in marketing and PR in the same industry – a job he enjoyed, but which introduced a drinking culture and encouraged networking with alcohol.

‘The drinking in the evenings crept into drinking in the afternoons, secret drinking at work and a very quick spiral into unmanageability. I was unable to keep that job and I think that was probably my first experience of stigma from colleagues, peers, friends – lots of people turning their backs, lots of nasty comments. I was quite confused at the time because there was a lot of discussion on TV around addiction and a very big storyline on one of the soap operas… a lot of high-profile people in my industry were speaking up about addiction and it came across that there was a lot of understanding. That wasn’t my experience on the ground.’

Years later, working as a drugs worker in the unit that had changed his life, he took clients to a local shop, where the shopkeeper whispered to him, ‘I don’t know how you could work with these people’. It shocked him that there was still so much to do. ‘Every single client has identified stigma as a barrier to treatment,’ he said.

Institutional Stigma

For some parts of the population, including people experiencing homelessness, the layers of stigma and discrimination could seem insurmountable. ‘By and large the support and care is done in siloed forms,’ said Dr Colm Gallagher, clinical psychologist at Manchester mental health homeless team. ‘Often it’s fragmented, it’s inconsistent and when people find it very difficult to access mainstream services, that’s partly probably because of stigma from organisations and indirect discrimination.’ He talked about an overwhelming sense of rejection – ‘rejection from family, rejection from services and society as a whole’.

Running training sessions for frontline homeless sector staff, he asked them to think about the societal narratives around homelessness – that it was seen a lifestyle choice, that the person was a nuisance, lazy, manipulative and always in trouble with the law. They were encouraged to think about how this affected the person’s motivation to seek help, when they ‘think that they are not worthy, rejected from society, they’re not wanted, that they can’t be trusted, that this is their own fault, that no one cares… this is going to have an effect on how willing they are to engage,’ he said. ‘Why would they go about seeking help if they think they are going to be rejected again?’

Trauma-informed

Gary Broderick and Paula Kearney described being involved in the Dublin Citywide Stigma Campaign, run by Trinity College. The findings of the programme were important because they came from women who were actively using services and actively experiencing stigma. They explored the idea of a trauma-informed approach and realised that people were traumatised not just in a childhood or because of things that had happened in their lives, but also by the services they went into.

When people were treated completely differently it became an everyday thing, so that they didn’t even realise the damage that was being done and the impact it was having on their self-worth. The task in hand involved ‘upgrading their awareness’.

Service user voices

Talking to people about their experience of stigma was a vital part of learning how to break it down, said April Wareham, director of Working with Everyone, which aimed to bring the voice of lived experience to policy and practice in health and social care.

In a project that gathered feedback on stigma from people with lived experience (commissioned by NHS APA) all participants felt that people who used drugs were stigmatised. ‘What we found was that people experience stigma in different ways,’ said Wareham. As well as preconceptions about race, culture and a criminal past, there was often a disconnect in treatment ranging from stigma about the drug of choice to dismissing mental health problems before the drug problem was addressed, or vice versa.

The manner of communication played an important part – ‘I was spoken to badly – none of my opinions seemed to matter’. A key finding was, ‘if people experienced poor treatment or stigmatising behaviour once or more than once in one service, it meant that they were unlikely to go back to the service and ask for help again.’ One of the biggest effects of stigma was a feeling of isolation.

Things needed to change, but the hard bit was ‘changing the way we think and act’, she said. And a main action point was, ‘don’t deny our lived reality. Don’t tell us something doesn’t hurt when we know it does.’ One of the worst pieces of feedback she heard regularly from services was, ‘our service users don’t feel that way – it doesn’t happen here,’ she said. ‘Don’t take away our lived reality from us. We know what we’ve experienced.’

We needed to put the voice of lived experience into every room, added Tim Sampey, chief executive of Build on Belief, who also worked on the project. This would demonstrate that ‘this is what stigma feels like and these are the consequences, because one of the things we heard was that nobody would ever consider making complaints about anything. Consequently, stigma and self-stigma meant that people didn’t even access health services half the time until their health problems were really, really serious,’ he said. ‘So whichever part of the drug and alcohol treatment system we work for we really have to think about how are we going to challenge stigma with our colleagues elsewhere in the health field, or we’re not going to get anywhere.’

Call for unity

‘I think we talk about stigma in this sector a lot more than we used to but that doesn’t resonate out into other sectors where it needs to,’ said Karen Biggs, chief executive of Phoenix Futures, a service with experience of leading a powerful anti-stigma campaign.

‘It’s very easy to feel that you’re on a hiding to nothing around tackling stigma when you hear politicians using incredibly stigmatising language and that being a thread through our policy approaches,’ she said. It was in our power to change things, but we needed to work more effectively together and have ‘solidarity for each other’.

One of the most effective ways forward was to realise ‘the power of lived experience and that people in recovery can really start making a difference to adjusting the concept of self-stigma and self-worth,’ said national recovery champion, Ed Day.

He talked about ‘parity of esteem for peer-led lived experience groups’, which were often separated out from the addiction services. But there was real opportunity at the moment, coming from the Dame Carol Black review, which he believed had brought together different communities – the providers, the family groups the commissioners, and the people with lived experience – and which had been reinforced by the day’s event. ‘We’ve all got to work together, we’ve got to stop circling the wagons and shooting each other,’ he said. ‘We’ve got to work to a common purpose now.’

The call for unity was shared by members of the English Substance Use Commissioners Group, who saw the therapeutic alliance as ‘the most significant driver of outcomes… with the bond that we’re working to agreed goals and agreed plans,’ said Kim Hager. Niamh Cullen, a commissioner in Calderdale added that ‘our real and our very strong asset is that over the last ten years we’ve grown a highly visible community called Calderdale in Recovery that’s been constituted as a community organisation. This has been really key to us addressing stigma.’

Challenging leadership

For Sarah Galvani, professor of social research and substance use at Manchester Metropolitan University, it was a clear case of needing to challenge leadership. While we needed that vital involvement of people with lived experience, she pointed out that ‘people aren’t going to come out and not be anonymous while we have that kind of really insidious kind of culture and wider public messages from leadership’ – messages that perpetuated the view that ‘no one likes a drug user’. There was no alternative: changing this had to ‘start with a very courageous and bold policy shift’, she said.

View conference sessions at www.nhsapa.org/stigma-conference-2021