‘It’s up to us!’

Opening a conference about stigma, Roy Lilley began with a personal story. His dad was ‘born illegitimate’ as it was regarded back then. The status thwarted his chance to go to the Royal School of Music at the form-filling stage. He came back from WWII with shell shock and went to a mental health hospital where they gave him electric shock therapy. Later, struggling to make a living in post-war austerity Britain, he couldn’t get a job in the grocery trade where he’d started, as he’d been in a mental institution. 

Roy Lilley – NHS Writer, Broadcaster, commentator and conference speaker
Roy Lilley – NHS Writer, Broadcaster and commentator

‘That’s a story about stigma,’ said Lilley. ‘It happened a long time ago, but it has relevance. Stigma changes people’s lives.’ Whatever the context – and ‘it doesn’t matter if they’re unfortunate enough to be dependent on a drug’ – it was still stigma, and as prevalent now (he gave Twitter as an example) as when it impacted his father’s life in the 1920s.

Thinking about three categories of stigma could help to tackle it, he said. Self-stigma was about internalising feelings of shame and lack of self-belief; social stigma involved taking on negative attitudes towards yourself and your family members, while structural stigma was built into the system.

So what could we do about any of this? ‘It’s up to us – up to people like you who work in the sector,’ said Lilley. He offered a phrase from his earlier writing about stigma: ‘Stigma is a burden borne by people with quite enough of a burden already. It’s our job to lighten their load.’

A good approach started with curiousness. ‘When you think you’re doing a good job, how do you know someone isn’t doing it better? You don’t know.’ This approach led him to set up the Academy of Fabulous Stuff to share best practice, and he urged people to ‘pinch it with pride’. He believed that we wouldn’t improve health services by league tables, inspections and embarrassing people. ‘The only way to improve our services is by being curious, by opening our minds,’ he said. ‘Our minds are the parachutes – they’re better when they’re open.’

The next important factor was to improve skilfulness by training, aiming to ‘improve everyone’s skills base by one notch’. He appealed to budget holders to give time to people to improve their skills base, something that could be done in-house through dialogue, by talking to each other, if money for training was tight. We should aim to ‘lighten the load by taking one brick at a time’ and days like these [the online conference] were ‘when people come together to lighten people’s load’.

The other important strand was helpfulness, he said. ‘Test everything you do – is this helpful?’

So how do we get rid of stigma? His response to this was that we don’t. Stigma was ‘part of prejudice, part of life, the ugly bit of humanity’. Rather, we needed ‘to make people understand that no one sets out to take drugs and destroy their and their families’ lives. We have to look beyond that’ and attempt to understand it: ‘If you were born when they were born, taught what they were taught, you would think like them.’

Everyone had a history, a back story, and were unlikely to have been born in a bundle of rags in a doorway, but ‘most of us were lucky to take the right fork in the road’. He gave the example of a sportsman – breaking a leg would result in plenty of support, but the complete opposite if they had a substance misuse problem.

anti stigma campaignMoving on to a panel discussion, conference chair Danny Hames asked, ‘how do we tackle stigma in the NHS?’

‘The separation of drug users needs to be called out,’ said Kate Hall, who had been involved in a ‘See the person, hear their story’ campaign. ‘We need to lobby from the top. There needs to be a complete intolerance of how people with addiction issues have been treated over the years.’ Despite the health focus of the Dame Carol Black review, the drug strategy had become very crime focused – a ‘silo approach’. ‘We need to work really collaboratively to make sure we’re doing the best we can for people who are facing really marginalising behaviour,’ she said. ‘It wouldn’t be tolerated in any other healthcare setting.’

Andy Ryan, head of services at Changing Lives, had experienced stigmatising treatment himself, with a hospital doctor telling him ‘these beds are for people who are really sick, you know’. While acknowledging that stigma was ‘an unfortunate offshoot of stresses and pressures of the system’, he urged everyone to look at education and language. He also highlighted a ‘systemic problem around teams’ and called for transparency in tackling stigma together, including working with employers. We should also help people to understand the causes of addiction, especially the link with trauma, and to explore the potential of psychosocial interventions. ‘Be curious not critical,’ he said. ‘That could really link us together.’

Howard King offered a perspective as MD of a large community trust that included mental health. While disappointed that the drug strategy focused on crime, it was also an opportunity to work with people when they were brought into the criminal justice system – to turn the stigma of being separated from society into a chance to connect them with services. We needed to resist the NHS culture of working in blocks, even though it was ‘easier to push people off and refer them to someone else’ and be curious about how we could help them.

‘We can deal with all these stigmas but not in one go – it’s a brick-by-brick approach,’ concluded Lilley. ‘As we say in the academy, start with the person and work backwards. It never fails.’

Challenging Ignorance

hep c u later campaign‘Get that druggie out of my hospital.’ Tony Mullaney (now training and development coordinator at Hep C U Later) described the barriers that disclosing his hepatitis C status had put in front of his healthcare. A hospital had insisted on moving his operation to the end of the day so they could clean everything down. When he had an intravenous line in, nurses wouldn’t take it out for him. A dentist wouldn’t treat him at the mention of hepatitis C, even when he told the dentist he was antibody positive.

‘Stigma isolates people, pushes them away, makes them feel they don’t belong,’ he said. Furthermore, it made people with hep C afraid to disclose their status. People in prison didn’t want others to find out – ‘hep C is whispered about… people won’t share a cell.’ 

At home he felt stigmatised by his own family: ‘My mum washed my clothes on a hot wash so no one else could catch it.’ Even peers stigmatise each other, he said, as ‘no one wants to catch it – there’s ignorance on how it’s spread’.

So what could we all do to combat hep C stigma? Louise Hansford, Hep C U Later coordinator, said we needed to ‘demystify it, talk about it, make it OK for people to have hep C’.

Much of the stigma related to ignorance – she described how her friend was antibody positive, but the nurse appeared in full PPE and goggles when she had her baby. She had also had ‘horrendous experiences’ herself and believed it was ‘not through vindictiveness’. In the past, recovery workers didn’t talk about hep C, but now we needed to make it acceptable to have it. 

Hep C treatment had transformed her, and to see that replicated in other service users was ‘phenomenal’. ‘No one sets out to be a drug user with hep C,’ she said. ‘We need to get back to our core values.’

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