Patient experiences of mental health in London
This piece was commissioned and first published by openDemocracy’s Shine A Light project: https://www.opendemocracy.net/ourkingdom/rebecca-omoniraoyekanmi/black-and-dangerous-listening-to-patients%E2%80%99-experiences-of-mental-
It was also published by the Socialist Lawyer, Lacuna magazine, Counterfire magazine and the Justice Gap. The Illustration by Patrick Koduah, whose prizewinning work includes projects exhibited in the Embassy of Japan, commissioned portraiture of Prince Michael of Kent and music video animation for a recent Rolling Stone Magazine Band of the Year.
The boy with pale brown skin and black Afro is tall and has the face of young child. He’s wearing a baggy grey tracksuit and trainers. He turns away from the nurse, turns away from the other patients, his head raised, his face struck with irritation.
“He’s new,” Lawrence tells me. “He doesn’t want to take his meds.”
Lawrence, a young black man in his early twenties, calls over to the boy: “Calm down, man. Otherwise you’ll go to Bevan.”
Bevan. That’s a more secure ward, with fewer privileges, says Neil, who visits the psychiatric ward for the People’s Network, a local community group.
Lawrence nods and turns back to his laptop.
Neil, a shy, six-foot tall black man with a heavy limp, who spent 17 years fighting a drug addiction, reckons his drug habit grew out of his inability since childhood to accept his physical disability. Memories of being isolated and shunned haunt him and help him better understand the men he works with.
The boy kicks over a bright, yellow wet-floor sign and a loud alarm sounds. Nurses crowd him.
Lawrence goes back to his search on Amazon for books on the fall of Lucifer. He tells me about his weekly 20-minute consultation with a doctor. “Are you seeing anything? Are you hearing voices?” he says, mimicking the consultant. Diagnosed with schizophrenia, Lawrence was sectioned after falling out with his gran. (Being ‘sectioned’ means being detained against your will under Section 2 or 3 of the Mental Health Act).
It’s Lawrence’s third time on the ward. Neil says a lot of the men have nowhere to go and struggle to get housing when they are released. They might get in trouble with the police. Once, they’d have been brought back to the ward. These days, because of bed shortages and poor aftercare, most hang about on the streets or in hostels after release. They often end up at the People’s Network office, a few miles from the hospital; they run a soup kitchen one day a week.
The ward’s lounge area is bright with large windows. The view is a green courtyard and the hospital’s redbrick buildings, no sky. A TV encased in a plastic box hangs on the wall. A limp, white man wearing a yellow bandana and baseball cap watches, eyes glazed. Tom, 28, doesn’t mind it here, it’s quite relaxed with a nice atmosphere, though sometimes there is “conflict”. He shifts slowly on the sofa; turning his head looks like a huge effort. Tom, diagnosed with paranoid schizophrenia, was sectioned after getting into a fight with the police. “I haven’t worked for seven years,” he says, “before that I worked in construction, coffee shops.”
John, another man with a paranoid schizophrenia diagnosis, has spent much of his life in and out of mental health hospitals. A cheerful, chatty 45-year-old, he puts his current stay down to a scuffle with the police. “I get upset when I’m angry. To be black and upset is a cardinal sin.”
He says a fight with a police officer prompted his first sectioning 15 years ago. In court, he had a choice between prison and hospital. “They told me I wouldn’t have to take drugs, it would be better than prison, but it screwed up my life. Eight years of studying down the tube. At least if I had gone to prison I would still study.” He had been working his way up to an interior design degree, he says, starting with a foundation course at the London College of Furniture.
“I grew up with a superwoman, she used to go to work at nighttime,” he says, rubbing his swollen ankles.
John’s mother emigrated to London from St Lucia in the 1960s and married his father, who worked for the post office. They had six children. “A middle class black family,” he says. John has four children including a 29-year-old son lately diagnosed with schizophrenia. “The police wanted to charge him with class A drugs. But the police said scrap that let’s just section him.” His son now lives at a halfway hostel.
Neil says there is an over-representation of black people on wards like this. “They can’t live their lives as free people, they are always been dragged back to the ward. The resentment builds up.”
The People’s Network spends a lot of time on the psychiatric ward, supporting patients and working with their local NHS Trust to improve mental health care. But often the ward seems a place where patients are controlled and medication is used as a punishment, not treatment.
What happens outside the ward also creates problems. People queue outside everyday asking for help. They say it’s going to get much worse.
The easiest cut
The stigma around mental illness makes it easy to cut. Easier still, since so many of the cuts’ immediate victims are poor blacks and other people pushed to the margins. Mental Health Trusts must cut 20 per cent more than other hospitals from their budgets, which, combined with changes to the benefit system, has intensified the pressure on vulnerable people.
Staff and charities say people are surviving for months without any financial support because of the lengthy assessment process for receiving Employment Support Allowance, and the changes to their personal budgets.
There was a time when, if the state failed in this way, people in poor areas suffering with a mental illness could turn to Day Centres for support. Such places matter more than ever these days, because other services have been damaged by cuts — it can take months to get NHS counselling and the quality varies. But Day Centres themselves, funded by local authorities and Mental Health Trusts, are also suffering from cuts and struggling to cover the cost of a range of care for people.
Where once a person might travel to a single Day Centre and access various kinds of support, now they have to make multiple journeys to various places for help such as counseling, group therapy sessions, walking groups, art and music lessons, employment and computer skills classes, a hot meal.
Some centres even offered beds and a place to stay for a week or more if someone experienced a crisis and couldn’t get help elsewhere. But several of these places have closed completely, and those left have limited beds and limited time to offer people.
The colour of mental health
It is likely that the disproportionate victims of these cuts will be black mental health patients, that is those defined as BAME (Black Asian or Minority Ethnic).
Marcel Vige has worked in the mental health sector, teaching, lobbying and campaigning for more than a decade. Now head of equalities at MIND, he runs programmes with local mental health support groups across the country. “Services that are focused specifically on meeting the need of marginalized groups,” he says. “Those are the ones that are often community based and they are the ones that are the first to feel the impact of any reduction in services delivered within local communities.”
Last year 50,408 people were sectioned – the highest number ever recorded, according to Care Quality Commission research, which also found that more black people than average are detained under the Mental Health Act and they are more likely to have been sent there by a judge or police officer, rather than their GP.
Statistics from a one-day census published in 2011 show that black people are more likely to be physically restrained on a psychiatric ward, given higher doses of medication, and less likely to be referred to counselling.
Paul Burstow, a Liberal Democrat MP, touched upon the issue in a parliamentary debate last May. “It is concerning that services are being withdrawn where they involve providing peer support or reaching into harder-to-reach communities, particularly black and minority ethnic communities, which often get left behind and often are most prone to being subject to the most coercive parts of our mental health system.”
For decades these inequalities have been softened by community groups like the Peoples Network and people like Neil, who understood the needs of black patients in ways the state failed to. Over time the government recognized this too, and from the mid-90s there was some acknowledgement of mental health inequalities, some desire to do better. Funding followed. That’s gone.
A sound mind
“I call myself the wounded healer,” says Devon, a tall thin musician with cropped hair peppered with grey. He’s 54 years old. Behind his wire-framed glasses his expression is solemn as he describes the work of Sound Minds, the mental health charity and social enterprise he helped set up 20 years ago.
People suffering from depression, anxiety, schizophrenia, any sort of mental illness, they can leave that outside and relax here, says Devon. “We have people in and out doing all sorts of things, making music, on the computers and stuff.”
Devon’s openness and enthusiasm attracts people often marginalized because of their mental illness. Over the years he has helped people set up two reggae groups and a rock band. “One fine day, come what may, you have got to rise up singing, no more tears,” goes one his own gentle, lulling reggae songs.
Devon lived with his grandmother in Jamaica till he was seven, and then was sent to live with his parents in London. When his grandmother died in Jamaica a few years later, his grief overwhelmed him. Later, in his early twenties, Rastafarianism’s music and spirituality gave Devon a sense of identity and security, and he found some relief from his grief.
This was short-lived. One day sometime in 1982 Devon went to visit his mum. Unbeknown to Devon, his mother had called a doctor in anticipation of his visit. She was worried about him and disapproved of his ‘lifestyle’, the Rastafarianism and that he was squatting in Battersea as part of the rent revolt movement.
When he arrived at her house, the doctor was waiting and examined him, then another doctor turned up with the police in tow. “I don’t know why the police came, I hadn’t done anything wrong.” He talks as though it happened just yesterday and not 32 years ago. “They said, come on we’re taking you to the hospital. But there was nothing wrong with me.”
Devon stayed sectioned for six months, tranquilised every few days, physically restrained by police officers on the ward, subjected to electroconvulsive therapy and diagnosed as schizophrenic. “There was nothing wrong with me before that,” he says.
Two years after he was first sectioned, he had a ‘relapse’, was sectioned again and heavily medicated. “In the mental health system I lost my identity,” he says. “I didn’t feel like a black guy anymore. I felt like a white guy. I lost my cultural identity through the system.”
That echoes Lord Avebury, speaking in the House of Commons in 1982, the year Devon was first sectioned: “…It is said by the West Indian community that psychiatrists in the prisons, and indeed in the hospital service as a whole, are not properly trained in recognising the different cultures of ethnic minorities, and that as a result people may be wrongly diagnosed as suffering from mental illness when they talk, for instance, as the Rastafarians frequently do about God.”
Not long before then, a young black Rastafarian called Richard Campbell was convicted of attempted burglary. In prison he was diagnosed with schizophrenia, and medicated. He refused to eat. An officer found Richard dead in his cell on 31 March 1980. He was 19 years old. The official cause of death was dehydration and the inquest jury returned a verdict of self-neglect, expressing “concern at the lack of specialist care facilities” in prison. The anger around Richard’s death — it took some time to establish what happened to him while in custody — was a trigger for the Brixton riots.
Some members of the psychiatric profession began to question the disproportionate occurrence of African Caribbean men compulsorily sectioned, detained on wards for long periods, diagnosed with psychosis and heavily medicated. Theories linking the experience of illnesses like psychosis to genetics abounded but have since been dismissed; studies based in the West Indies show that black people there do not suffer in such high numbers. This epidemic was something unique to the black population in the UK.
Among other fatalities: Michael Martin in 1984, Joseph Watts in 1988 andOrville Blackwood in 1991. These three black men had been diagnosed with schizophrenia and treated at Broadmoor psychiatric hospital. They died in custody after being restrained and injected with powerful anti-psychotic drugs. The inquiry report, into Orville Blackwood’s death (subtitled Big, Black and Dangerous?) officially recognises of what ordinary people had known for some time. It said:
“Over the last twenty years, studies have indicated that, if they come to the attention of the psychiatric services, black people are more likely to be removed by the police to a place of safety under Section 136 of the Mental Health Act 1983; they are more likely to be detained in hospital under sections 2, 3 and 4 of the Mental Health Act 1983; they are more likely to be diagnosed as suffering from schizophrenia or another form of psychotic illness; they are more likely to be detained in the locked wards in psychiatric hospitals; they are more likely to receive higher doses of medication; they are less likely to receive non controlling treatments such as psychotherapy or counselling. In addition black mentally disordered offenders are more likely than their white counterparts to be remanded in custody for psychiatric reports; they are more likely to be in higher levels of security and for longer, and they are more likely to be referred from prison to regional secure units or special hospitals.”
That was 1993.
People began to listen to (though not endorse) the work of black mental health professionals like Suman Fenando, who questioned the Eurocentric outlook of western psychiatry and its impact on migrant populations and people of Asian and African descent living or born in Britain. The Royal College of Psychiatrists began discussing ‘cultural problems’ and the Mental Health Act Commission produced several reports on race and culture.
Patterns emerged. The black experience of the mental health sector mirrored what was happening elsewhere in society: secondary school expulsion figures, unemployment, poor housing, poverty and racism. West Indian migrants had experienced relentless and deliberate social discrimination in the decades after their mass arrival in Britain following World War Two. Their children inherited severely limited access to decent housing, education and work, and were constantly stopped and searched by the police. British society, in the form of its institutions more than its individual citizens, had decided the blacks were dangerous and must be controlled.
Sidney did not arrive on the Windrush in 1948, he came from Zimbabwe in 1995. It took two years for his world to collapse.
Sidney worked for five years as a journalist in Zimbabwe. When his newspaper was shut down, he left the country to look for a more stable place to pursue his career and build a life for his family. Sidney wears a crisp ironed shirt and metal-rimmed glasses, has a clear professorial voice, with the occasional clipped tones of a Zimbabwean.
He looks down at his frothy coffee with a half smile and tells me about his hopes and ambitions on coming to Britain 15 years ago. The plan was to work, study and set up a home for his wife and children.
The reality was a £2 an hour job as a security guard six days a week. Sidney’s immigration status meant he had to pay his own way in further education. He enrolled on an access course (9am to 5pm) and kept the security job (7pm to 7am). Something had to give. In March 1997 he was sectioned.
Over a five-year period Sidney was sectioned 10 times and eventually diagnosed with psychosis. Sometimes a furious anger would erupt, once on the streets after being stopped by a police officer. Other times he was listless.
The tendency then of the mental health sector to treat him as a member of a homogenous group, a black man whose anger must be contained, frustrated Sidney. Only when he met a consultant who questioned his diagnosis and talked to him did Sidney begin to learn how to manage his illness. The consultant told him he was suffering from bipolar disorder and listened as he told her about his family, his ambitions and his disappointments. That was nine years ago and he hasn’t been sectioned since.
SIMBA is coming
Every person with a mental illness is an individual with singular circumstances, but as group there are common experiences that unite, says Sidney. Frustration with the mental health sector united black people of all backgrounds. By the time the Orville Blackwood report in 1993 set out what they already knew, black families and carers were forming befriending groups. Community-based groups operated from psychiatric wards, old community centres, libraries, parks, trips to the seaside, wherever they could find a space to talk. As well as Sound Minds, Devon set up Canerows and Plaits, a user-led ward-visiting group. These black-led organisations were part of a general ‘user-led’ revolution, by patients of all backgrounds, within the mental health service throughout the eighties and nineties.
Raj came to the movement after 20 years spent in and out of hospital. “I have had so many different diagnoses. I would go into crisis, not really knowing what was wrong, but just feeling like I didn’t fit, either in my family or the world around me,” she says.
Raj’s father came to England from India in 1947, and her mother and siblings followed soon after. She was born in London. In between long months in hospital, she tried to “carry on a life”. She worked in a science lab.
After many years of revolving door admissions, and during a period of relative stability, Raj attended a conference about mental health. She met people who expressed concerns about psychiatry, human rights and the disempowering ways in which they were being treated within mental health services. They chimed with her experience.
Raj tentatively started to question her own treatment: “As far as they were concerned I was always better because my behaviour was better. But as far as I was concerned I was still quite confused and felt very out of it at times.” The idea of challenging the system frightened and worried her: hadn’t these people saved her life?
Raj attended a few black mental health events in Brixton, south London in the 1990s. “There was a lot of stuff going on in the voluntary sector in those days. There was lots of activism around race and mental health and the over-representation of young Black men in psychiatric hospitals. One of these was Orville Blackwood, a young Black man who had died in Broadmoor as a result of being restrained. His mum was amazing. She was going around with this picture of her son and she was so passionate. I’d never been really political before, but now I began to see things through a different lens. It was a process for me because I was half a scaredy cat,” says Raj. She also worried about putting herself “out there”.
Raj joined a mixed user-led group based primarily at a psychiatric hospital in London which, though feisty and active, never discussed race. “It was us not mentioning it, not the white people being racist, it was us censoring ourselves. We had too much to lose.” The black members of the group didn’t want to “make waves” by bringing up race. But as confidence grew, some of the black people in the group set up a separate black group. They made waves.
“Lots of people were against us,” says Raj. They were accused of being racist. “People were suspicious. Some black people were saying it as well, ‘why do you want to separate yourselves?’”
The new group was called SIMBA, Share in Maudsley Black Action. They announced it by sticking up posters saying SIMBA is coming. Raj grins. “Nobody knew what it meant. Everybody was getting a bit freaked out.” SIMBA occupied a small room on the ground floor of the main building at the centre of the sprawling hospital. Raj laughs again, remembering the noise they made. “If anybody had come in under normal circumstances they would have probably have sectioned us all.”
Most of SIMBA’s members were African Caribbean men, and there were a few women. “I wrote a poem once about the rich diversity within that black group. Yet there was this commonality too. Partly because we had been through the system, but partly as well because we had all experienced racism.” Mental health rarely came up in their long, intense discussions. Instead they talked a “hell of a lot about race”, racism, identity, spirituality and their childhoods.
In and out of wards since her teenage years, Raj picked up on some of the inequalities within mental health care. But she wanted to take her thinking a step further, and had been working on a theory for some time about the revolving door within mental health for black communities. You start out in an overtly racist society, she says, which means you are more likely to live in poverty or be unemployed or suffer violence, factors that can influence poor mental health. Then you enter the mental health service, which is infused with the same implicit assumptions and prejudices of wider society, which drives you further into illness. “If you do manage to get out of mental health services, you get out, go back into society, but now you go back into society and not only are you black but you have also got psychiatric diagnoses.” And it is not just race, she adds, this idea applies to all forms of disadvantage; class, gender, disability . . . and so on.
Things were gonna get better
A network of black-led user groups developed, spreading from London to cities like Manchester, Birmingham, Liverpool, Glasgow and Edinburgh. Black people within psychiatry, practice and academia, were rising to senior positions, and working within charities such as MIND. After Labour’s 1997 Election victory, hopes were high, black voices were not so much outsider voices, there was a new willingness to listen.
The Macpherson Report in 1999 into the murder of black teenager Stephen Lawrence signified an official commitment to ending a crude, brutal institutional racism that had dogged Britain’s black population for decades.
The MacPherson Report defines institutional racism as “the collective failure of an organisation to provide an appropriate and professional service to people because of their colour, culture or ethnic origin. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness, and racist stereotyping which disadvantage minority ethnic people”.
An amendment to the Race Relations Act in 2000 charged all public authorities with a statutory duty to eliminate unlawful racial discrimination.
Soon afterwards, a group of psychiatrists, campaigners and patients contributed to Inside Outside, a report published by the Department of Health in 2003. The report, authored by Professor Sashidharan, then medical director of North Birmingham Mental Health Trust, set out a framework for race equality within the mental health service.
The Inside in the title referred to the need for change within the mental health sector and offered measurable ways to effect that change. Outside was about engaging community groups, removing the stigma around mental health within black communities and empowering patients.
The professor consulted widely, seeking out the views of patients, community groups and campaigners from Britain’s largest minority communities: Black and African-Caribbean, South Asian, Chinese and Irish.
Those involved believed Inside Outside was commissioned to form part of national policy on reforming mental health services. This never happened. Instead, Professor Sashidharan was replaced, and a new team brought in to write another report, which some described as a watered down version of Inside Outside.
One patient and mental health specialist who contributed to Inside Outside told me that the whole process felt “incredibly political”, and left everyone involved feeling pushed aside and frustrated. Another contributor told me that perhaps it was because the changes proposed would be too difficult to make. Both asked not to be named.
Around this time, an inquiry took place into the death of a healthy 38-year-old David ‘Rocky’ Bennett, an African Caribbean man diagnosed as schizophrenic. David Bennett died after being physically restrained —a team of nurses sat and lay across his body and held his head face down for 25 minutes — at a psychiatric hospital in Norwich. The final inquiry report called for “ministerial acknowledgment of the presence of institutional racism in the mental health services and a commitment to eliminate it”.
Two years later, in 2005, the Department for Health published its response to the David Bennett inquiry and a plan to revamp the mental health services in light of the two Inside Outside reports. This was Delivering Race Equality, a five-year action plan to improve the care given to minorities with mental health needs.
For many it did not go far enough. Marcel Vige, now head of equality at MIND, says: “The Inside bit had been stripped out and the Outside bit expanded. The main delivery component of Delivering Race Equality was around these 500 community development workers. We had put in place key performance indicators, all that kind of stuff, all of that was dropped.”
People welcomed the community focus, but they were disappointed that there wasn’t equal emphasis on the role of the Mental Health Trusts and other state bodies, who urgently needed to change the way they responded to black and other minorities.
Raj, who was also involved in the consultation for Inside Outside, says aboutDelivering Race Equality: “It was set up in such a bad way that it was never going to change the world. They kept changing things at a senior level and there wasn’t much consistency. They said, ‘We’re going to employ 500 community development workers, but we won’t give them any power. They are going to go to your black communities who are very difficult to engage with.’”
However watered down the programme was, it was a rare opportunity, and so Raj, like others in the black community, threw themselves into making the best of it.
Over decades one common flaw in reports and investigations into the treatment of black people by the mental health sector was the lack of hard data.
The Delivering Race Equality programme promised an annual Count Me Incensus to record the number of inpatients across England and Wales on March 31st each year, noting the ethnicity of people detained under the Mental Health Act 1983 and the reasons they had got there.
The first census confirmed what black communities knew. Most minority groups — including white Irish people — experienced higher than average rates of detention compared to the white British population, the rates of compulsory detention among people of African descent outstripped all other groups. Black people were three times more likely to be referred to hospital and 44 per cent more likely to be detained when they got there. Referrals were more likely to come from the courts or the police for black men and this group was more likely to be kept in seclusion or physically restrained.
Many in the psychiatry profession felt that the conversation around Delivering Race Equality unfairly accused them of racism. Such unease inhibited progress.
Ian, who has worked for a range of NHS and charitable mental health bodies since the mid-nineties, says it took him two years to convince the NHS Trust he worked for to let him implement race equality and culture awareness training.
“They weren’t getting it right at all,” he says. Most of the patients on the ward were black. The only black members of staff were cleaners or nurses. The entire board, the people with power who were responsible for commissioning, was white. “How could they know what was going on in the communities they were trying to serve?”
In November 2006 the architect and national director of Delivering Race Equality, Kamlesh Patel, resigned from his role. He told Community Care that race equality and mental health tended to drop off the agenda when “the money runs out”. Delivering Race Equality needed more robust central leadership with a “strong message” sent out to health chiefs that there would be “repercussions” if it were not delivered.
In 2007, in an article in The Psychiatric Bulletin co-authored with Chris Heginbotham (PDF here) Patel wrote:
No one has yet provided an adequate explanation for the very high rates of admission and detention for some of these groups – notably for Black African, Black Caribbean and Black Other (Black British) people.
Practitioners who complained that psychiatry and psychiatrists were being accused of racism, “misunderstand the concept of institutional racism and dismiss the legitimate concerns of the Black community.”
Patel and Heginbotham wrote: “Either there is an epidemic of mental illness among certain Black groups or there are seriously worrying practices that are leading to disproportionate levels of admission. Wherever the answer lies on the spectrum between the two extremes it is essential that we find out as a matter of urgency.”
Among the multiple reasons for the high rates of admission and detention of some Black and minority ethnic groups, they said: “institutional racism in mental health and in wider public services is a contributory factor.”
In 2010 the Delivering Race Equality programme ended. The government’s target of 500 development workers was never reached; some of those who were employed felt abandoned and powerless once the programme ended. The money for the programme had not been ring-fenced; stretched healthcare Trusts may have spent it elsewhere. The Count Me In census stopped. The last set of statistics published in 2011 suggested that things were getting worse, particularly for young men with mixed ethnicity.
Big, black and dangerous?
There are few mentions of race in the current government’s Mental health strategy documents. Instead it has been submerged under the general heading ‘equalities’. Within the black community, there are wide variations of experience and concern including high rates of self-harm among Asian women and high occurrences of African Caribbean men sectioned by the police. Lumping all such variances together under the general heading ‘equalities’ increases the risk of mental health providers ignoring them. It is much cheaper to focus on meeting a general equalities duty, than commission work to investigate and improve services for specific groups. People are marginalised in different ways and each group, whether gender, class or race, needs tailored support.
At a London psychiatric hospital ward a member of staff says most of the people brought in by the police are black. On another London ward 12 out of 15 patients are black and diagnosed with schizophrenia, despite a marked difference in their behaviour. Sean Rigg was a physically healthy 40-year-old diagnosed with schizophrenia who died of a heart attack in Brixton police station after being restrained by officers in 2008. In 2010, Olaseni Lewis, a 23-year-old man, died after being physically restrained three times over the course of 45 minutes at a psychiatric hospital in London. The stereotype big, black and dangerous persists.
“Black people are considered more dangerous and there is more fear about them,” says Matilda MacAttram, a human rights campaigner who managed to convince politicians to debate black deaths in custody last December.
Matilda set up Black Mental Health UK, a human rights campaign group in 2007 because after 30 years of discussion she wanted action.
A tall, elegant woman, Matilda speaks softly but firmly: “This is not a BME issue. This is an issue that disproportionately only affects one group. Three generations from one community have been lost in this system. Detention rates have fallen over the last five years from 2005 to 2010 nationally. But for one group they have doubled – it is not a BME issue.
“It doesn’t matter what you call it when you can see consistent inequalities of this nature. Not only that, the sort of outcomes that make the Sean Rigg experience almost the norm. I don’t know what other adjectives you could use. Any system that can take the life of a physically healthy person with impunity and then there is no accountability, what do you call that?”
Matilda MacAttram lobbies policymakers, collects data on lives lost in state custody, helps black families pursue justice. Her vision for change? “Compassion, decency, justice.”
The wounded healer
“Ethnic minority populations continue to have the worst experiences of mental health,” the Care Quality Commission reported in June 2014.
The community groups – made up of churches, family, friends, activists – that have always sprung up to meet needs not filled by the state, carry on, but they have more battles to fight than in the early days of New Labour.
Organisations that once battled Trusts for better care for ethnic minorities, have suffered funding cuts. Some have gone under.
Many of the individuals who campaign have mental illnesses themselves. They strive to manage employment around their health, claiming benefits when they need to. Welfare ‘reform’ has brought them fresh adversity and new battles to fight.
Raj has decided to take a step back. “I think I have just got burnt out really,” she says. Sometimes it is just too depressing to go back to the wards and see nothing has changed after so long.
Once Sidney got care and treatment that helped him, he turned to help others. He works with refugees and African Caribbean men. He started peer support groups to battle stigma within black communities. He helps former patients get basic housing and finance advice, trains school teachers, police officers, local university staff on how to deal with mental ill people.
Funding for one peer group he set up ended when the Delivering Race Equalitystopped. Spending money on such groups, is no longer a priority for NHS Trusts cutting budgets and restructuring services.
Devon uses his experience to help other people. He visits patients on the ward that once held him prisoner. Sound Minds is one of the few self-help mental health groups left in south London. Many have closed or are winding down for lack of funding.
Over decades Devon has developed ways to manage his ‘condition’ and takes anti-psychotic pills every day.
Devon sits with his hands interlaced and gazes steadily ahead, serious, but occasionally that surprising smile. There is no trace of bitterness or anger; instead his reflections about the faults of a system that may have misdiagnosed him and certainly disempowered him are mixed up with pride and positivity about how he has used this experience. To form several reggae bands, to set up two mental health charities, to visit the psychiatric ward of his local hospital offering advocacy, kindness and support.
The wounded healer. He no longer looks like a Rastafarian, but, “I kept the music”, he says, “Thank god for that.”
Hear I Am A Social Action for Health report on life on a mental health ward in East London. (May 2010)
Care Quality Commission:
Monitoring the Mental Health Act in 2012/13 (January 2014)
Department for Health:
Delivering Race Equality: A Framework for Action(October 2003)
Delivering Race Equality in Mental Health Care: an action plan for reform inside and outside services & the government’s response to the independent inquiry into the death of David Bennett (January 2005)
Delivering Race Equality in Mental Health Care: a review (December 2009)
No Health Without Mental Health(February 2011)
Post-legislative Scrutiny of the Mental Health Act 2007(October 2013)
Independent Advisory Panel on Deaths in Custody Third statistical report by the Independent Advisory Panel (IAP) into deaths in custody and covers the period between 2000 and 2012 (May 2014)
Mental health crisis care: physical restraint in crisis (June 2013)
The End of Delivering Race Equality? Perspectives of frontline workers and service-users from racialised groups (2010)
National Audit Office Helping people through mental health crisis: The role of crisis resolution and home treatment services (7 December 2007)
National Institute for Mental Health in England Inside Outside: Improving Mental Health Services for Black and Minority Ethnic Communities in England (March 2003)
National Mental Health Development Unit BME groups and mental health
Evidence for Centre for Social Justice Mental Health review (18 October 2010)
Race Equality Foundation The importance of promoting mental health in children and young people from black and minority ethnic communities (April 2014)
The Sainsbury Centre for Mental Health:
The costs of race inequality (October 2006)
Breaking the Circles of Fear (July 2002)
AESOP study group First episode psychosis and ethnicity Published in World Psychiatry (February 2006)
Community Care magazine:
Count me in survey shows DRE failing (February 2010)
Delivering Race Equality in Mental Health struggles to recruit workers(November 2007)
Mental health: ethnic minority groups still over-represented (January 2010)
Ethnic minorities still over-represented in mental healthcare (April 2011)
Crichton, John. H. M.
Comments on the Blackwood Inquiry Published in Psychiatric Bulletin(1994)
Forensic Psychiatry Research Unit, St. Bartholomew’s Hospital
Raised incidence rates of all psychoses among migrant groups: findings from the East London first episode psychosis study
Published in General Psychiatry (November 2008)
Institutional racism in mental health care
Published in the British Medical Journal (29 March 2007)
Patel, Kamlesh & Chris Heginbotham
Institutional racism in psychiatry
Published in the Psychiatric Bulletin (2007)
Abbott, Dianne On the end of DRE and quality of services for BME people2July 2014
Black Mental Health UK
Written evidence submitted to the Home Affairs select committee inquiry into the IPCC
Burstow, Paul On inequality and mental health services 16 May 2013
Clark, Helen On David Bennett’s death in custody 9 November 2001
Cox, Thomas On the death of Richard Campbell
Lord Avebury on Rastafarians and mental health
Lord Hunt On mental health spending27 January 2014
Crisis in the Community: The African Caribbean Experience of Mental Health(2008)
Fernando, Suman & Frank Keating (Eds)
Mental Health in a Multi-Ethnic Society (August 2008)
Ryan, Mick. Lobbying from Below (1995)
Sean Duggan Chief executive, Centre for Mental Health, Jenny Edwards CEO, Mental Health Foundation, Stephen Dalton Chief executive, Mental Health Network, Paul Farmer CEO, Mind, Mark Winstanley CEO, Rethink Mental Illness, Professor Sue Bailey President of the Royal College of Psychiatrists.Letter to the Guardian Risks of deep cuts in mental health funds (12 March 2014)
Professor Roger Walker, Chief Pharmaceutical Officer for Wales. Letter on the effects of some schizophrenia drugs