Language matters when it comes to describing people with substance issues, hear delegates at this year’s NHS APA conference
‘People with eating-related conditions are always referred to as having an eating disorder, never as “food abusers”,’ professor of psychiatry in addiction medicine at Harvard Medical School, Dr John Kelly, told the NHS APA’s Living the stigma: understanding addiction and overcoming prejudice conference. ‘So why are people with substance-related conditions referred to as “drug abusers” or “alcohol abusers”, and not as having a substance use disorder?’
When it came to substance use problems, this ‘abuse’ terminology had been adopted across scientific and clinical literature in countries around the world, he said. Describing a substance use disorder instead as something that was treatable and from which people did recover, however, undoubtedly helped to reduce the stigma.
Our understanding and conceptualisation of these conditions and what underlies them inevitably affected our approaches, he said. ‘Should we appropriate more funding for prevention, treatment and recovery support services – or should we build more prisons?’ While those kind of decisions at a policy level were all inevitably affected by stigma, language also evolved over time. ‘We don’t talk about lunatic asylums or dipsomania today. Language changes, and it should change when we understand it may be stigmatising and affecting different populations.’
Many people would argue that this was ‘all just political correctness’ and didn’t really matter very much, he said. ‘We mean well, even though we may not use the most optimal language. But we tested this in experimental studies, and found it does make a difference – even among expert clinicians.’
More than 500 doctoral-level clinicians were exposed at random to vignette scenarios with descriptions of people either as having a substance use disorder or as substance abusers, and were asked to rate whether the person was to blame in the scenario and whether they should receive treatment or punishment. ‘We found that even among experts, at random, they were susceptible to more stigmatising beliefs and attitudes towards the exact same person if they were described as an abuser as opposed to having a substance use disorder.’ The same experiment carried out among members of the public had even more pronounced differences in results, he pointed out.
One definition of stigma was ‘an indelible stain or mark’, NHS England’s national mental health director, Claire Murdoch, told the conference. ‘What a dreadful thing for any human being to carry. We also know that can easily be internalised and turned into a sense of worthlessness, a lack of hope, and a difficulty in asking for help.’
When it came to accessing help, it was vital to address the ongoing gaps between mental health and substance services, she stressed. The best services thought long and hard about ‘no wrong front door’, so that no matter where someone presented ‘such will be the extent of join-up and the clarity of the patient pathway that people don’t feel bounced around.’
Part of the NHS long term plan for mental health was to see a roll out of gambling addiction clinics, she said. ‘There’s a growing concern that there’s a clear link between those most severely addicted and suicide, but also a whole array of other challenges and problems.’
Until around ten years there hadn’t been a single NHS-funded gambling clinic in the country, she pointed out. ‘I was sure that in a matter of two or three years we’d see the roll-out of those clinics everywhere. It’s taken longer than that, but we will very soon be at 15 new NHS specialist gambling addiction clinics, and I feel really proud that we’ve worked so hard between us all to have this addiction recognised alongside the seriousness of other addictions.’
Responsibility was still far too often focused on individuals, however, as if it was merely ‘lack of willpower’ that led to someone experiencing gambling addiction. ‘I’m really aware that this applies to all addictions, and it’s really important that we do take a really comprehensive public health approach – proper education, early intervention, and no-blame approaches with compassion.’
On the question of why mental health services were still so reluctant to work with people who had substance issues, the restructuring in the wake of the 2012 Health and Care Act had led to local authorities delivering a ‘tremendous amount’ in terms of drug and alcohol services, but had also coincided with ongoing national economic challenges and huge financial pressures, she said. ‘What we saw was a kind of separation among commissioners around addiction and NHS services,’ and a move away from addiction psychiatrists and ‘expensive staff’ in the NHS towards different models – all of which had driven ‘quite a big divide into what was already quite a fragile set of pathways’, she stated.
‘All of these hand-offs that we do in the NHS cost us money,’ she continued. ‘Even to assess someone and say no takes time and money, and to do that multiple times takes more time and money. But doing it right once – together, or in a single service – really helps.’ Clearly not everyone with a substance problem had a mental health problem and vice versa, but where someone did have co-occurring conditions ‘why would you make a human being already juggling with so much go through different pathways?’ The frequent re-tendering of addiction services also hadn’t helped, she added. ‘I’m hoping we can get more stability so people can concentrate on what really matters – which is making silos a thing of the past.’
There were now real opportunities for genuinely good quality system design, however, said clinical lead for the NHS Northern Gambling Service, Dr Matt Gaskell. ‘You can’t disentangle the two, and we’ve got the opportunity with the NHS specialist clinics, and working closely with third sector partners, to accurately understand the nature of those co-morbidities and work on the sequence of interventions in a really thoughtful way.’
A lot of racially diverse communities had issues accessing treatment services because of ‘not just societal stigma but challenges within their own culture and potentially with regards to religion,’ said operational and development lead for the West Midlands Gambling Harms Clinic, Paul Evans. ‘And that’s especially acute with gambling. I’d ask colleagues to consider that and try to understand how we can reduce barriers overall.’
But it was also firmly about core education and attitudes, stressed Murdoch. ‘Just because you work in mental health services you assume you’re always going to be fighting stigma, that you understand it, that you chose mental health to work in because you have a fire in your belly about the rights of individuals. But be aware, because we’re just as susceptible to pigeon-holing people as anyone else. So for me it’s about awareness-raising, education, and designing services differently from the very outset.’
Find out more and watch sessions from the NHS APA 2023 Anti-Stigma Conference