When Are We Going to Stop Marginalising Black and Minority Ethnic Mental Health Patients?
The government has all but abandoned the vital issue of race in mental health treatment – a frightening reality when you consider that the number of people from BME groups being admitted for crisis care vastly outweigh any other.
My dad has worked in NHS mental healthcare for as long as I can remember. It wasn't really something I paid any attention to until he started working in one of London's most notorious psychiatric intensive care units, the ones often gloomily known as "punishment wards" and associated with the extreme levels of "mad" that movies are made from. Over time, I went from not really understanding what his job was, to being quite affected by his anonymous night-shift stories of patients who had fed their cats crushed glass or had been admitted convinced they were the Messiah.
My dad's bad days at the office weren't because of annoying colleagues or shitty, overpriced lunches. No, they were because someone had been so determined not to deal with the chaos in their head that they'd managed to find a way to take their life in one of the most monitored environments the NHS can offer. Overwhelmingly, the most seriously mentally ill patients in his stories seemed to be from ethnic minorities.
Everyone, everywhere can experience a mental health condition at some point in their lives. One in four of us in the UK will over the course of a single year. But what happens when race, discrimination and profound cultural misunderstandings mean mental health care provisions aren't there to catch your fall? Or if the stigma and lack of understanding of mental illness within your community means you don't get the right help until you're very unwell?
There's no conclusive evidence to tell us that black and minority ethnic, or BME, groups have a biological predisposition to serious mental illness, yet they are startlingly over-represented in the UK's long-term psychiatric care, and nearly always at the point of severe crisis. Why?
Jamie*, from London, was 26 when he was sectioned and detained in a psychiatric intensive care unit during an acute episode of schizophrenia. He said the delay in addressing his issues stemmed from an ingrained sense of shame surrounding mental illness. "There's a stigma within the black community around mental illness which I think is a fear of looking weak," he explains. "As a black man, on one hand you've got all this pride around not asking for anyone's help, but then you've got a big pressure to make something of yourself, to not be the stereotype." He says that "paths to traditional help" were "never on the table. You'd turn to the church or you'd turn to family before you think: Ahh, I need therapy."
Our NHS has inevitably struggled to accommodate the nuances and cultural needs of an ever-changing British population – particularly within the mental health sector, which has always been chronically underfunded, despite mental illness now being the single largest source of burden of disease in the UK – but an already complicated navigation of mental health care in the UK seems to be more difficult for people from BME communities, who are overwhelmingly being treated at the sharp end of mental illness, through detainment in a hospital under the Mental Health Act or under a Crisis Resolution Home Treatment (CRHT) team.
Even when they are under the care of a mental health team, though, many people from BME groups report feeling like they're not getting the specific care they should be. Again, it's worth remembering that they may be feeling the most desperate and frightened they have in their entire lives. There is a lack of care that is individually-focused, with a view to making communication as clear as possible and ensuring that any cultural or religious differences are addressed in the process – particularly for people like Jamie, who will be carrying the weight of immense shame as well as everything else.
In their 2013 briefing for Clinical Commissioning Groups, the charity Mind reported that after a year-long independent inquiry and a stream of FOI requests, they'd found stark inequalities in the way people from BME groups are treated when they are in crisis.
Thirty-three trusts gave Mind a breakdown of ethnicity for their CRHT teams' activities. In most areas, there was a lower proportion of white people admitted to hospital by CRHT teams and a higher proportion of other ethnic groups – particularly Black Caribbean. In the briefing, several patients spoke of serious problems with the quality of life on mental health wards and the lack of therapeutic interventions for inpatients. Concerns were expressed around the use of medication at very high doses, and also, most sadly of all, around difficulties in communication – a critical part of mental health treatment.
If you can't speak honestly and openly, how can you hope to be truly heard? How can you be reassured that you're getting the right treatment?
The investigation heard overwhelming complaints about a "lack of interpreters, or interpreters being available only once a week, as well as a lack of psychological therapy in the person's own language". Mind also didn't get a strong sense from mental health services of a strategic drive to overcome ethnic inequalities – "examples of inspiring practice were very few" – suggesting that it reflects wider concerns that race equality has come down the agenda in recent years.
It's two years since this unsettling report was released, so I gave Rezina Hakim, Policy and Campaigns Officer at Mind, a call to get a sense of where things are now. Basically, BME mental health issues are still being swept under the carpet.
"All areas of our healthcare have been stretched with the cuts," she says, "but we can assume that in times of pressure it's highly unlikely that specialist services tailored towards the BME community will be continued."
Does the General Election – just days away at the time of writing – hold any glimmer of hope for an overhaul of BME mental healthcare provisions?
"At this time in the last election there was hardly any mention of mental health. Now it is prioritised and that, at least, is a fantastic step forward," Hakim continues. "However, there's been a dearth of conversation around BME mental healthcare."
Mind's biggest worry moving forward, she says, is that we still don't have enough detail to understand how proposed improved services would affect people from those backgrounds who are often at a crisis stage once they reach care, as well as being subject to dual discrimination. "It's an uphill battle, but we're confident we can make headway in the same way we have with people talking openly about mental health."
A stand out part of Mind's report was a criticism of the number of community treatment orders (CTOs) among some BME groups, and also how black men are disproportionately diagnosed with schizophrenia. This is, of course, one of the most enduring and divisive debates on mental illness within ethnic minorities – the erroneous medical "phenomena" of schizophrenia in young black men that, unless you actually research it, at face value, could be easily viewed as a "black" disease.
Jonathan M Metzel's book, the notorious The Protest Psychosis: How Schizophrenia Became a Black Disease, warned us how anxieties continue to impact doctor-patient relations in a seemingly post-racial America, in light of how associations between schizophrenia and blackness emerged during the 60s and 70s, and it feels like we're crying out for something similar here in the UK, now. Why? Because we have been hearing about an "epidemic" of schizophrenia among African Caribbeans for a while now, but there is still no absolute indication that those from Black African or Caribbean backgrounds have a genetic predisposition to schizophrenia.
A major study conducted in 2009 (named Aesop, Aetiology and Ethnicity in Schizophrenia and other Psychoses) found that people from the African Caribbean community are nine times more likely to suffer from schizophrenia than people in the white community. The study involved 500 patients with mental health problems from various ethnic groups, comparing them with a control group of 350 healthy subjects. It concluded that the root causes of this epidemic were due to a wide range of social factors that lead to severe social isolation. An isolation that will almost certainly be compounded by a diagnosis of schizophrenia.
In 1998, the case of schizophrenia sufferer David "Rocky" Bennett brought to light the effects of sustained discrimination on mental health. Bennett died after being restrained in a Norwich psychiatric ward.
Bennett's death was the catastrophic end to a day of his temper being flared by a flurry of racist slurs from a fellow patient. The inquest that followed his death levied damning criticisms of "festering" institutional racism at the NHS, stating that staff were oblivious to the "corrosive and cumulative effect of racist abuse upon a black patient".
Over the two decades he spent in and out of NHS care, Bennett was vocal about the kindness and emotional investment of individual carers but also, conversely, of a collective ignorance that his needs were different to those that could be understood by a largely white establishment. It's a sentiment echoed by Sri Lankan-born psychiatrist Suman Fernando, a champion of cross-cultural psychiatric care and long-term critic of government policies on BME mental health, who said in 2012 of the coalition's attitude to addressing racial disparities in mental health diagnosis and treatment: "They have walked away from it completely."
Fernando also said that mental health professionals at the NHS still had "inherited" ideas of racial stereotypes, and further attacked the coalition.
"There are one or two brown-skinned people who always get to chair something but not to actually say anything," he explained. "Tokenism is counter-productive. It prevents change... there is the fear [among politicians] that it is a can of worms and that the right will accuse them of pandering to [black people]."
But surely this all goes way beyond the "institution" and is, rather, another product of the cyclical nature of discrimination? When you habitually treat someone as anything but an individual, it becomes a self-fulfilling prophecy. Before any kind of significant change manifests in a system that is clearly some way from offering a case-by-case, individual-focused level of care, we need to realise that awareness and greater education surrounding mental health issues is needed at a formative level – at schools, in youth centres (ones that haven't been closed because of local authority cuts), in youth media.
"I still have never really talked to friends of even my mum about my illness," says Jamie, suggesting an endemic lack of communication surrounding mental illness, echoing the Aesop report's conclusions about social isolation. I asked Jamie what he would suggest now to a black boy going through anything similar to what he did? "Talk," he says, matter-of-factly. "To anyone."
* Name has been changed
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