The Word on the Streets
This year’s Hit Hot Topics asked, how can we give harm reduction most impact on the frontline? DDN reports, pics by Nigel Brunsdon.
‘What the heck are we doing, criminalising people for what they do to themselves?’ Nanna Gotfredson is the founder of Gadejuristen, the ‘Street Lawyers’ of Denmark. She brings legal outreach to homeless people and witnesses the ‘constant war on drug users – the constant fight between doves and hawks’.
‘Denmark is a welfare country – but the welfare system is designed for middle class people,’ she told the HIT Hot Topics Conference. With her team, she brought harm reduction, outreach and legal aid services – ‘and hugs, because we also need love’ – to people on the streets. It brought her into confrontation, and then ‘a critical dialogue’, with the police – but it also brought progress. Denmark now has five heroin clinics and has had drug consumption rooms since 2012, all with vein scanners.
‘You can get so well within a month,’ she said, adding, ‘We can’t have a situation where people choose between HIV and a penalty.’
Sue McCutcheon is all too familiar with these issues – and the gap between poor engagement with services and the potential for radically improved health. Working as a nurse with the Homeless Primary Care Team in Birmingham, she looks for the substance users who need help but are not coming forward. Her job is about ‘taking the service out to them, so they have healthcare’, working for four hours a day on the street.
‘Rough sleepers generally have multiple healthcare concerns,’ she said, ‘and many present late in the pattern of illness. Health concerns will have gone on for weeks and months, until it becomes a health emergency.’ Many will have had a history of very poor engagement with services and poor care or treatment, which often colour the way they use services.
Homeless people suffered the same illnesses and challenging conditions as the rest of us, she pointed out. ‘But imagine managing diabetes when you are homeless on the street, dependent on soup kitchens and without benefits.’
Within the last 18 months she had noticed skin lesions that looked like impetigo. When swabbed they turned out to be group A strep, potentially serious for those whose immune systems are poor, and PHE Birmingham confirmed there had been outbreaks. Sharing spliffs and bottles and sleeping next to someone infected made such conditions easy to spread and hard to contain, but information in drop-in centres and ‘simple things like hand washing and hand gels in hostels’ were effective in stopping the spread of disease.
Another simple and effective measure had been the widespread introduction of take-home naloxone, equipping people with the skills to manage resuscitation from overdose and minimise harm.
‘I can’t talk about homelessness without talking about NPS,’ she added. ‘In Birmingham, it’s “mamba” – what we’ve seen in the last six to 12 months is shocking. One day last week we dealt with four people who were unconscious, vomit in their mouth.’ Others suffered cardiac arrest in the street. ‘And people say, “it’s just mamba”.’
Most people that McCutcheon saw and supported were groin or neck injectors – people who tended to say ‘I’m alright’ when they weren’t. ‘It’s your role to make sure they’re alright,’ she said. ‘It’s about being vigilant around healthcare issues.’
The reality for many was grim, living and using out in the cold, surrounded by faeces and vomit. ‘We have to look at all possible options to make a difference, including consumption rooms,’ she said. ‘I have a duty as a nurse to minimise harm. We need to look at every option that might produce a better outcome for people. It’s about building relationships… finding ways to deliver healthcare.’
Does language matter?
Different perspectives drew a very visible line between language and stigma.
Speakers at Hit Hot Topics covered many areas of harm reduction, drug use and outreach, and their experience came from different countries and contexts. But there was a common theme that ran through each of their talks – the ‘dehumanising language’ that perpetuated stigma.
Professor Susanne MacGregor of the London School of Hygiene and Tropical Medicine charted 30 years of drug interventions. Throughout ‘many contextual changes, during which harm reduction has had to struggle’, language had been adapted and new terms introduced. The New Labour era, ‘tough on crime and the causes of crime’, gave way to ‘the language of recovery’. Gaps grew between those who provided services and the people that used them.
‘Let’s stop using derogatory descriptions of people and move to a society where rights and evidence prevail,’ said Naomi Burke-Shyne, Harm Reduction International’s deputy director, in her talk about the oppressive impact of drug policy on science. ‘We can’t afford to abandon evidence, and language is a big part of that,’ she said. ‘We can’t use stigmatising language. Let’s stop talking about abuse – it implies all use is abuse.’ There were words that were formerly used about the LGBT community that were ‘unspeakable today’, she pointed out, adding ‘we need to move the same way’.
Prof Craig Reinarman of the University of California talked about drug policy reform and the ‘slow motion shift’ in the way we think about people who use drugs. Back in the 1980s, as initiatives spread from Liverpool like a ‘crack in the stone wall of punitive prohibition’, the very words harm reduction were ‘blasphemy, giving the stamp of control to addiction’. Similarly, in the US, scientists ‘couldn’t even use harm reduction in the title of a paper’ for it to be accepted.
Drug terminology became the language of fear: ‘Crack cocaine is the principle cause of urban ghettos’, President Reagan’s drug czar William Bennett had said in the 1980s. Even now, 40 years later, discussions take place ‘in a different register’ for different parts of the population. White people find treatment beds waiting, not prison cells, said Reinarman.
Delon Human of Health Diplomats, Switzerland, found dialogue missing where tobacco harm reduction was concerned. Of the earth’s 7bn population, 1.4bn were smokers and one out of two smokers would have a condition that would limit their life. In the UK e-cigs were resulting in the number of smokers being ‘the lowest it’s ever been’, with the ‘biggest gains in the shortest time’, yet public health seemed unwilling to talk frankly about the benefits.
‘We can all accept seatbelts, but for some reason they’re not accepted in drugs and alcohol,’ he said. ‘We need to find new language to frame the debate’.
Stephen Malloy of the European Network of People Who Use Drugs (EuroNPUD) called for plain language to galvanise the pace of a harm reduction response to drugs such as fentanyl, whose dangers were well known and documented. This was an example of direct action needing to be accompanied by straight talking, he said, quoting the Canadian activists’ slogan ‘they talk, we die’.
For Patriic Gayle of the Gay Men’s Health Collective, harm reduction was being compromised because the conversation between gay men and drug workers was ‘conspicuous by its absence’. Back in the ’80s, the LGBT community and substance misuse field came together to make sure Aids campaigning was as hard-hitting as it could be, but the dialogue had disappeared. Gay men ‘need to be engaged and wooed a bit to trust services,’ he said, and his organisation had had to resort to distributing resources and information that spoke honestly and openly to peers.
In a similar context, Joseph Kean, visiting research fellow at LJMU, looked at the language and culture of image and performance enhancing drugs (IPEDs) and asked, do we have relatable ways of reaching the ‘massively underestimated’ 70,000 people using these drugs?
DrugWise’s director Harry Shapiro felt that disconnection was abetted by the terminology we chose, and that drug workers must take a share of responsibility for perpetuating stigma through using ‘a language of hate’, which made people who use drugs feel ‘expendable’.
‘It resides within the community and the drug sector to challenge it,’ he said. ‘I don’t use addict, clean, drug abuse or misuse.’
Teaching a university course on personal and professional development, Dr Jennifer Randall had had the opportunity of exploring the triggers to attitude change. Introducing students to the Support, Don’t Punish campaign, she witnessed how they embraced a Gabor Maté approach – ‘think of people with love’ and had insight into creating the right language to change culture. Using Dr Carl Hart’s book, High Price, she encouraged ‘slow critical conversations’ that were effective in changing students’ attitudes and preconceptions.
The final speaker, Emma Roberts, demonstrated the value of making grassroots user-led initiatives the mouthpiece, putting them at the forefront of commissioning and capacity building. Through describing her work with the Harm Reduction Coalition in the US, she explained that the voice of people who used drugs was vital, not just in leading advocacy, but in choosing the right language and setting the tone. Working with different drug user alliances she was able to challenge stigma and redefine recovery, demonstrating that ‘it is not the opposite of harm reduction’, but all part of the same necessary conversation.