‘Women and non-binary people are often excluded from services,’ said Aura Roig Forteza. ‘When they go to other services, such as mental health, they’re not allowed in because they’re using drugs.’
She went on to describe her experience in her home country, Spain. In the late ’80s, Spain had the highest rates of HIV in Europe. Her service, Metzineres, was responsive – an innovative, daring, non-profit cooperative, providing a sheltered environment exclusively for women. ‘It covers the full spectrum of harm reduction approaches,’ she said.
Being effective meant breaking protocols. The Metzineres model provided consistency while being reliable, pragmatic and cost effective. Above all, it welcomed all women with compassionate responses. ‘We try to empower the women and respect their goal,’ she said.
Flip the narrative
‘I used drugs since I was 13 and was only ever treated punitively,’ said Anna Millington, explaining why she set up the support group, Mother2Mother. When her daughter was taken off her for two years, she realised how hard it was to move on from a negative stance.
‘We’re told “don’t fear us, you can come into services” – but it’s a lie,’ she said. ‘Mothers are told they have choices and options – but they haven’t.’ Experiencing attitudes that they shouldn’t be taking drugs, mothers were hiding from treatment services and afraid of social services. ‘But they’re not the expert – you are,’ she would tell them. Generational trauma was all too frequent, but ‘if you’ve been taken off your mother, you’re even less likely to trust services.’ Her mission was ‘changing things from hidden and seedy to public and positive’, as ‘if people feel so badly about it, they don’t want to talk about it.’
‘Do you consider mothers who use drugs in your service?’ she would ask services, But she soon realised that acknowledging the question implied having to do something about it – a slow process. So she launched a campaign to collect positive and negative stories and create materials for mothers, based on what they actually wanted.
‘I’m angry that I’m watching mothers and children being ripped apart,’ she said. ‘It’s time to flip the narrative.’
‘Drug use doesn’t happen in a vacuum – the lives we live impact on how we use drugs,’ said Ailish Brennan of the Women and Harm Reduction International Network. Her journey as a transwoman had combined joy and acceptance with traumatising experiences, and as a result she was passionate about designing gender-sensitive services.
‘Self-medicating was the only outlet I had,’ she said. ‘Trans people are generally very demotivated to access services – it’s very low down on the list of things we want to do.’ However, accessing treatment had changed the way she used drugs and enabled her to enhance her health and wellbeing, so she wanted services to be more accessible and approachable. Above all, they had to be consultative: ‘We are all experts on our own existence,’ she said. ‘We need to be respected and included.’
Working at the Academy of Perinatal Harm Reduction had led Joelle Puccio to become passionate about reproductive justice and ‘the right to control our bodies’. The argument had come about barriers and oppression, rather than the drugs. In the US, overdose was more common during the year following birth. The body was changing during pregnancy and afterwards, so women needed to know what drugs they were taking and what the likely effects would be. ‘We need to make the healthy choices the easy choices,’ she said.
Criminalisation was ‘ineffective’ and she was involved in developing a harm reduction toolkit – ‘thoroughly researched and referenced’ and ‘available to anyone who needs it, anywhere in the world’. She hoped to adapt the toolkit for the UK, free to access.
The need to challenge the narrative was demonstrated to great effect by Katrina Ffrench of Unjust CIC. ‘Young black men are in gangs to push drugs – that’s the narrative,’ she said. Her organisation was based in London but with a national focus to bring people together and hold flawed practices of drug law enforcement up to the light.
‘Black people are four times more likely to be stop-searched and five times more likely to have force used against them than white people,’ she said. ‘But behind the statistics are people. The perception is that every black person does drugs.’
The narrative persisted – in County Lines scenarios, young black boys were seen as perpetrators not victims. Police officers were able to ‘smell drugs in your car from theirs’ – as shown by a recent case of car search of a young black couple with their baby, with no grounds for suspicion. ‘Child Q’, a 15-year-old schoolgirl had been subjected to an unlawful search in school.
‘We have to end the racist war on drugs,’ said Ffrench. ‘And we have to stop criminalising mental health. Life is fucking tough sometimes and it’s your body, your choice.’ So how could we encourage the whole criminal justice system ‘to de-escalate stuff’? It was imperative to work together and engage with young people by acknowledging them, she said. ‘We isolate them.’
‘We don’t have enough of us infiltrating the system,’ she told the audience. ‘Go into these spaces, we need you. Are you working with marginalised groups – or just people who look like you?’
Lies, dammed, lies…
Beccy Henderson talked about ‘lies, damned lies and statistics’ from her work as a consultant. Drug strategy focused on repeat offenders without considering the reasons why.
The reputation of drug testing on arrest had been tarnished by the private sector scandal of manipulated results. But headlines did not necessarily tell us the truth – we needed to check the methodology and sample size. Furthermore, there were stats ‘they don’t want you to think about’, she said, relating to childhood trauma and to deindustrialisation – the massive increase in opiate use coupled with the ‘decimated communities’ of the Thatcher years, which ‘took away cohesion. It destroyed everything and people ended up taking heroin.’
‘The barrier to any harm reduction is stigma,’ said Henderson, refocusing on the here and now. ‘We need to make it safe to say “I use drugs, I want help”. If we can remove stigma we can start to help. Stigma creates silence – and it’s silence that kills people.’
‘Are the key principles of harm reduction different for young people?’ asked Stuart Haste of Compass’s free and confidential young people’s drug and alcohol service, as he looked at reframing the conversation to be relevant to the younger age group. Age 18-24 was a high target group for drugs education – ‘but what about the age before that?’ he asked. ‘I have seven-year-olds in services using class C drugs.’
The ‘near misses’ were a lot higher than the deaths, and for young people it was often about trauma and mental health. Because it was ‘so slow’ to get a diagnosis through child and adolescent mental health services (CAMHS), drug and alcohol services found themselves on the frontline.
‘We won’t tell them off, we’re inclusive, we will talk to the individual about trauma,’ he explained. But we needed to stop splitting services and bring them back together so the person had a continuous experience.
Natalie Broughton brought her perspective from Matrix young people’s service, a partnership formed of the local authority, Turning Point and local services. ‘We want young people to know what support could look like,’ she said. ‘We start by meeting the young person where they’re at on that day. We give them that space and someone to listen to them.’ They were guided by an informal and compassionate approach. Flexibility was equally important, with no ‘two strikes and you’re out’ policy.
Alongside forming multi-agency partnerships, they worked with schools, reminding them of guidelines and evidence to reduce exclusions – and she acknowledged that this wasn’t always easy: ‘We have teachers who have their own ideas on what drugs education should be. It’s about breaking down barriers.’
Last chance to listen
End-of-life care was one of the most important opportunities to listen and respond, said Sarah Galvani as she shared research from conversations with people in hospitals and hospices.
Her project at Manchester Metropolitan University aimed to find out about responses to people who use drugs, when they were at the end of their lives. The conversations included people with experience (with an age range of 38-71) and their families, friends, and carers.
Firstly, it was found that while hospices’ knowledge around alcohol was good they were ‘a bit at sea’ with other drugs. Then it became clear that there was a general lack of end-of-life communication – some wouldn’t talk about it; others struggled to understand. Hospice staff often assumed that somebody else would have already told the person they were dying.
The person concerned often anticipated discrimination, and assumed they would be treated differently. But they were likely to be afraid and need support, and often had a sense of being somewhere that was not age-appropriate and not set up for younger people. Hospices were a real comfort and relieved loneliness, but there needed to be more understanding of self-stigma and the accompanying defensiveness that were so often present.
Research colleague Sam gave the views of carers and families – a snapshot of ‘the chronic strain of caring’. People didn’t know what to do for the best and there was often no one around to advise. The impact of chronic strain could reveal emotional limitations – ‘I despised him’ – and there was a lack of support and communication, often accompanied by the social isolation that came with the burden of care. People had a fear of opening up about this, and a lack of trust in the response they would get.
The result of the project was an objective – to develop a new model of care, with short, medium and long-term outcomes. It was also important to consider the impact on the professional, added Galvani, both from personal grieving and from it being an ‘unsuccessful completion’. ‘Talking about death and dying in our services is so important,’ she said.
Information and resources at endoflifecaresubstanceuse.com
Photography by Nigel Brunsdon