In January last year, Lisa Rodrigues returned to work after a period of depression. Having worked as the chief executive of an NHS mental health trust for 13 years, Rodrigues was aware that some people say their experience of mental health services wasn’t as good as it might be. “I think probably quite a lot of us have been in denial about that for a long time, truth be told,” she says.
But when she attended a round table event organised by anti-stigma campaign, Time to Change, five weeks later, Rodrigues was shocked to hear what service users were reporting. “I was pretty raw actually and I’d probably gone back to work a bit too soon but I had no idea what we were going to be hearing, it was just appalling” she says.
“Basically people were saying that their experience of mental health services was no better than it had been for many years, in some cases worse – staff were discriminatory, there was a lack of hopefulness and out of that was born a wish in me to do something to make a contribution.”
Rodrigues joined Time to Change as a volunteer after retiring from her NHS role in July 2014 and has since chaired a steering group to develop two pilot projects that aim to tackle discrimination within mental health services. The projects, which are being delivered in partnership with the Northumberland, Tyne & Wear (NTW) and Gloucestershire & Herefordshire (2Gether) NHS Foundation Trusts, launch this week.
“We’ve got denials going on at various levels [about this issue] but we don’t go on about those because what we want to do is work with people who are positive,” says Rodrigues.
“When we designed the project we were really keen to find Trusts that would work with us as volunteers and not be done unto. The two trusts demonstrated their readiness and were open about the fact that they had these issues within their own organisations.”
‘Resistant to change’
An evaluation of the Time to Change campaign published in the British Journal of Psychiatry found that between 2008 and 2011 the average discrimination ‘score’ reported by people fell by 11.5% – a sign of improvements in tackling mental health stigma.
However, the same study found “no significant reduction” in the level of discrimination people reported from mental health professionals.
The study pointed to several reasons why professionals’ behaviour might be more resistant to change than other groups. One issue was that professionals work with people at the most severe end of the spectrum and this may contribute to unconscious bias.
Prejudice could also be an aspect of burnout, “which is not uncommon among mental health professionals”, the researchers said. Official NHS figures show that stress among mental health workers hit a record high in recent years.
‘Lack of hopefulness’
Whatever the reasons, when people experience stigma from professionals it can have a huge impact on their recovery.
This was the case for 27-year-old Laura, who struggled to find the care she needed to manage her diagnosis of borderline personality disorder when accessing outpatient services four years ago.
Laura has seen both sides of the system. As well as having used services, she works as a peer support worker at the Northumberland, Tyne & Wear Trust, where she supports other individuals who are experiencing mental ill health.
“The way I was talked to is what upset me the most,” she says. “One counsellor called me a pathetic little girl and told me I might as well accept that I was always going to have a mental illness and that I’d never get better, it was horrible.”
“It made me feel like I couldn’t be someone in society who got on with things. I wouldn’t be able to go to university, I would never get a job, I was going to be one of those people who just stays at home. I had to be looked after and mollycoddled. I felt ‘I’m ill’ and that’s it.”
This experience left Laura feeling reluctant to engage with services, despite desperately needing their help. “It felt like the stigma around mental illness was always going to be there,” she says. “I was really sceptical about being seen again – why would I want to put myself in that position?”
The new Time to Change projects will facilitate sessions that bring professionals and people that use their services together to discuss changes that could help reduce stigma, as well as acknowledging the increasing pressures frontline staff face.
What they won’t be about, Rodrigues points out, is finger pointing and blame. “We can’t be having organisations told ‘you must be more compassionate’ because it just won’t work’.
“We want people to talk about it, to recognise that there is no them and us – it might not be you but it could be someone in your family so deciding that patients are somehow separate is problematic,” she adds. “Staff should bring their whole self to work – we want to see people do that.”
Key to this will be ensuring staff feel comfortable to share their own experience of mental illness with their colleagues – something that John Lawlor, chief executive of the Northumberland, Tyne & Wear NHS Foundation Trust, has personally championed within his own organisation.
Lawlor has had diabetes for years, as well as recurring depression, which comes back every few months. He talked openly about his health at the first AGM he attended after joining the organisation in 2014, because for him “it’s just part of me”.
“Would I worry about telling someone I’ve got type one diabetes? No. So why should I worry about telling them that I suffer with depression?,” he says.
“I’m not saying that everybody has to behave like that but if we can just encourage people to feel that it’s okay to talk about it – even if it’s just with close work colleagues – then I think that helps them to empathise even more with the people they are supporting.”
Research undertaken by Time to Change found that people defined discrimination when using mental health services in different ways. Access and waiting times for treatment and the design of services were cited as examples of stigma alongside staff attitudes.
Lawlor says it’s therefore important to recognise the pressures on frontline staff and ensure they have the confidence to speak up when something isn’t right – whether that’s to report discriminatory behaviour or to raise concerns about how services are being run.
“Staff still feel frightened about what the consequences might be if they raise concerns,” he says. “We’ve got to set the tone right from the top so that people feel they are working for an organisation that is trying to do the best it possibly can for the people we serve.”
Part of the problem is the language around discrimination and stigma, Lawlor adds, because it leaves professionals feeling heavily criticised.
“I think what we’re actually trying to hear is that people sometimes feel that we’re so keen to rush to a diagnosis that we sort of forget there’s a whole person in front of us,” he says.
“I don’t think anybody intends people to feel that but obviously, when someone presents in a crisis, your first priority is to keep them safe and then to think about appropriate treatment.”
For Laura, being treated as a ‘whole person’ was the key to her recovery. “When I came back into services, I was seen as a person, not as an illness and I cope better now because of that,” she says.
She decided to join Northumberland’s team of peer support workers as a result of the care she received and has also recently got married and bought her first home. “I know now that I can do what everyone else does – I might struggle a little bit more, but it’s worth the struggle to know that I have a life at the end of it.