Mental Health and the BME Community in London

15 May 2014
Good evening, the title of my speech this evening is "Black People and Mental Health" with particular reference to London, but nothing I say is exclusively about London. You kind can find the pattern of the challenges I'm going to set out throughout the country.

The reason I chose this as my subject tonight is that I believe that the way in which the mental health system fails people of colour is a tragedy that has long been consigned to the shadows. There's been a lot of debate recently about the importance of parity of esteem between mental health and physical health. Its something the coalition government has spoken about, its something the shadow health minister, my friend Andy Burnham, has spoken about. But I feel as well as parity of esteem between mental health and physical health, we need to talk about a parity of care between all section of the community and at this point that isn't happening. I hope to set out briefly some of the findings of research over the decades, which confirm that we are not seeing parity of care and service. Its a longstanding issue, an issue which goes back decades. Its a particular issue for London in as much as half Britain black and ethnic minority community is actually inside the M25 and we know sometimes its hard to get the figures but I'm to return to the importance of collecting the data. But we know, for instance, that in Lambeth more than half the people admitted to acute psychiatric wards, and more than 65% of the people in secure wards are from the Caribbean and African communities. I know from regularly visiting Hackney psychiatric wards, and the Hackney forensic unit, that the proportion in Hackney is as high, and I think higher. We have statistics for Lambeth but you only have to walk into these psychiatric wards in London to see that the majority of beds in the big London mental health institutions like Maudsley are occupied by people of colour.

So you may be saying why am I interested in this? I have a longstanding interest in mental health, this is the first time I have made a speech on it, but it is a longstanding interest of mine, and its partly because my mother was a mental health nurse in the 60s and 70s and on the general question of esteem I'm very clear that there's not a parity of esteem between mental health and physical health. My mother came here as pupil nurse in the 60s, as part of that generation of West Indian women. The she took time off work to bring up a family, she then went back into nursing in the 80s and my mother's career in nursing and the physical structures in which she found herself exemplified the lack of parity in mental health. The first thing to say about parity of esteem is that I think its always tended to be the case that what you might call the high fliers in health, don't necessarily go into mental health. I'll never forget when I was a brand new MP in 1987 and the then chief nurse in Hackney said "you must come round our hospital," she told me that a good time to come was late at night, she said "meet me at 10 o'clock at night and I'll take you to our 3 major hospitals: Bart's, Homerton and Hackney Mental Hospital." So I met her and we met around Bart's and she didn't think it was in any way remarkable, but in Bart's, even at the dead of night, you didn't see a single black nurse. Then we went to Homerton, and there were quite a few black nurses there doing the night shift, and she said to me innocently "you know, they seem to prefer the night shift, our day shift is quite different." Then I went to Hackney Mental Hospital, which was an old work house, and as grim as you might imagine, and of course all the nurses there were BME, day and night. I'm not taking anything away from the specialists in mental health, but certainly as far as nurses are concerned there has long been a stratification about who works in mental health as opposed to physical health. I was speaking about my mother, who was a devoted mental health nurse, she dealt with geriatrics with dementia.

But when she went back into nursing she worked in a hospital outside Huddersfield which was called Storthes Hall, it's now been closed down. It was a Victorian workhouse and it looked like a Victorian workhouse. You only had to visit Storthes Hall, which I did on a number of occasions, to see the conditions in which the mentally ill were held, and then go to what was then the brand new Huddersfield Royal Infirmary, which was in the centre of Huddersfield, to see physically demonstrated the complete inequality in relation to the service offered to people with physical illness and the service offered to people with mental illness. So my mother's life as a nurse brought home to me a number of these issues, particularly the general issue about lack of parity of esteem. And yet my mother loved her job, she loved the people she nursed, and so I suppose that through my mother I've always had an instinctive idea that people with mental health issues are human beings too, deserving of our love and care and attention.

The other reason why it's a longstanding interest of mine is that in City and Hackney the majority of people on wards were black. I remember, again as a very new MP, raising this with the head of psychiatric services in City and Hackney and he said "you must come and talk to me about this," so I said "okay." So I turned up to talk to him about the disproportionate number of BME people on his wards, and in fact he had about 3 people, having marshalled the most senior doctors in City and Hackney psychiatric services to meet me. They were of course all white, they were of course all men actually, this was 1988. And so I was a bit taken aback, I had though I was coming for a chat, whereas he had this phalanx of doctors to deal with what he obviously, I can see now, thought was a very difficult question to reply to. We went around a bit, and I said "why are the people on your wards in City and Hackney black? Because its way out of proportion even with the population of City and Hackney." These very senior doctors turned to each other, paused, muttered, and then one ventured that it might be to do with 'ganja psychosis' and then another ventured the opinion that maybe more mad people were migrating from the Caribbean. I had to say to him "It's hard enough to get into this country if you're sane, it is to the highest degree unlikely that the authorities are allowing all these mad people to come into the country." But the striking thing about this conversation was that it wasn't some casual conversation on a ward, the head of psychiatric services had marshalled the 3 most senior doctors in City and Hackney and all they could find to tell me about wards full of black people was 'ganja psychosis' and more mad people coming of the boats. I don't claim to be a specialist in this area and I can see many people in the audience who have campaigned for a long time, but it struck me not just how low the level of knowledge was about what seemed to be an obvious phenomenon, but frankly how low the level of interest was. If you can look at wards full of black people and say "this is ganja psychosis, that's it we don't need to examine this further" then I find that a bit distressing.

So, my mother taught me that people with mental health issues are people, and deserving of our care and concern, and I realised right from the beginning then, its a little better now, that there was a real resistance to examining what was happening to black people in the mental health system. Above all I also knew, and it became part of my life as an MP, so many black families that were struggling with the consequences of the mental health system's failure to offer the right support at the right time and to offer the help and the service they are entitled to. One of the saddest things I have seen over the years is black mothers, single heads of households, struggling with black males who clearly have chronic mental health problems. I've had women who have come to see me who have been assaulted by their own son, and when you say "what you have to do is go to a GP, maybe this man has to be sectioned" they say "no no no!" Because my final point is that for as long as I can remember there has been a terrible fear in the black community of the mental health system. So women would rather risk assault by their own son, would rather live in fear, than consign that son to the mental health system, because the understanding was they they get your child, they pump them full of drugs, they never come out again and if they do they're not the same.

So those were the three things that I knew about black people and mental health twenty years ago, and that's why I have an ongoing concern. One of the interesting things was, understanding what I did about the general picture, and seeing with my own eyes what was happening in City and Hackney in term of the wards being filled up, I wanted to get the figures about black people and the mental health system. So I wrote to the then junior health minister, who was Tory because this was during the last years of the Major Government, asking for figures about black people in the mental health system. What I discovered was that there were figures about the special hospitals but there were not figures for the system as a whole and one of the victories over the past decade was that under a Labour government we started to keep proper figures so you can begin to have a picture of what was happening. People sometimes say that you talk about statistics and its very dry, who needs figures, but in a way if you don't count people, people don't count. If you don't keep figures its all too easy to sweep the issue under the carpet.

So what is the overall picture in relation to black people and mental health? Well, the overall picture hasn't varied really since I first started to look at the issue in the 80s. There are disproportionate numbers of black people in the system, particularly men. We are more likely to be labelled schizophrenic. We present later and that makes matters worse. We are more likely to come into the mental health system through the criminal justice system, particularly by being picked up by the police on the street and finding yourself sectioned. We are much less likely to be offered talking therapy. I remember in the 90s I went to a centre in West London which specialised in talking therapy. What they did, which was very good in and of itself, was they got the whole family in, and they would offer the whole family talking therapy. I remember going to see them because they had contacted me because they were facing cuts. So I went along and I was impressed with what they were doing, because you can't look at mental health problems in isolation you have to look at the whole family and external pressure, so I was very impressed with their work. I spent the morning with them and this was a London-wide facility, the only facility of its kind which offered group family therapy. What I noticed when I walked around was that there were no black people there, and that was a shock because I was used to going to mental health wards and mental health hospitals where as I say the majority of people were black and certainly they were very diverse but there were no black people there at all. So I said to them "do you treat many black families?" and they said "uh..no" and I said "is there a reason for that?" and they said "we find black people don't benefit from talking therapy." And that seemed to me to presuppose a lot of things, but this issue about lack of access to therapy is a key one. We're also statistically more likely to be offered ECT, in other words we're more likely to be plugged into the mains. There's also a terrible history of deaths in mental health custody, which is to do with the type of restraint, which is to do with the fear of the violent black male, but there's a whole string of cases which I'm sure many of you are familiar and of which Sean Rigg's is only the most recent.

So that's the broad picture and sadly the broad picture has remained fairly constant over the decades but let's go through some of the work around this issue, and I'm doing this to demonstrate that the last thing we need actually around black mental health is more research, because its been done. I remember the first book I read about it, which was published in 1989, Aliens and Alienists: Ethnic Minorities and Psychiatry by Maurice Lipsedge. And its the classic text on black people and mental health and I don't think its ever really been improved upon, it examines the links between racism and psychological health and the inadequate treatment of ethnic minorities. It looks at the psychological legacy of colonialism and slavery, the racist basis in psychiatric and psychological theory and diagnostic bias. So that was 1989 and it remains a classic text and it remains a classic text and it remains extensively read, so the parameters of the situation we're dealing with were set out at least 20 years ago. Now alongside some of the academic work that's gone on we've seen campaigns in the community, people setting up community provision and I'll return to that. Then I think its worth quoting from research that was done by the Sainsbury Centre for Mental Health in 2002. We're now 10 years after the original work, and they said "mainstream service users are experiencing" and this is by the black community "inhumane, unhelpful and inappropriate. Black service users are not treated with respect and their voices are not heard. Services are not accessible, relevant or well-integrated with the community. Black people come to services to late, when they are already in crisis, reinforcing the circle of fear."

In 2005, and I'm sorry to talk about what was written in the past, but I want to emphasise that we're not talking about new issues which are unknown to people, but in 2005 the Department of Health drew up a 'Delivering Race Equality' action plan and they helpfully identified 12 characteristics which they hoped would be achieved by 2010. The first thing was less fear of the mental system amongst black people, then increased satisfaction with services, a reduction in the disproportionate rate of admission, a reduction in the disproportionate rate of compulsory detention, fewer violent incidents, a reduction in the use of seclusion, the prevention of deaths in mental health services, an increase in the proportion of BME service users who feel they have recovered from their illness, a reduction in the proportion of prisoners from black communities, a more balanced range of effective therapies such as peer support and psychotherapeutic counselling treatments, a more active for BME communities and BME service users in the training of professionals in regards of mental health policy and finally a workforce and organisation capable of delivering appropriate and responsive mental health services to black people. Those were their 12 points, and I think we can all agree they're very sound points. This was 2005. This was the Department of Health saying what it wanted to see by 2010. Okay, let's go forward to 2010 and what had happened with the points. Fortunately in 2010 the Care Quality Commission drew up a document called 'Count Me In' and one of the things they did was look at the progress on the action points in the 'Delivering Race Equality' strategy 5 years ago. And what did they find? Did they find there had been improvement on some things but not others? Did they find there had been improvement on easier things but not the harder things? Did they find any improvement at all? I'll tell you what they said, they said that the report found that in relation to admission, detention under the mental health act and seclusion, those concrete goals, nothing had altered materially since 2005.

So in 2005 the race equality strategy had set out where the Department of Health wanted to go, and in 2010 they weren't even half way there, the issues were the same. I can remember over that period going to see, because this was now a Labour government, going to see a Labour health minister who actually was someone I got on with quite well. Because I would go and see these ministers and wanted to talk about black mental health, and at the time you had these cases where black men would be released on license from their mental health institution were involved in acts of violence so you would see their picture on the front page of the newspaper. So I said to him "I know mad black men is not a particularly popular political issue but something needs to be done about all this" and he looked at me kindly and said "No Diane, mad black men is not a particularly popular issue." And that really was the end of that. So we've come to 2010, I wanted bring us almost up to date. In March 2013 Mind produced something called 'Mental Health Crisis Care: Commissioning Excellence for Black and Minority Groups'. What they had done was have a year long independent inquiry, they had made a series of freedom of information requests from 2012 and what did they find? They found continuing stark inequalities in the way that people from black and minority ethnic communities are treated when they are in crisis. They said that "we conducted a year long independent inquiry, we published the findings in our report 'Listening to Experience' and the inquiry found that people from some BME groups seem to be treated more neglectfully or more coercively, than the crisis care system treated other people."

Then to bring us completely up to date in February this year the Network for Mental Health produced a report called "Ethnic Inequalities in Mental Health: Promoting Lasting Positive Change." Its a long report, but they said this: "the majority of the survey respondents felt that their background (race, culture, ethnicity, migration / refugee / asylum status) had an impact on the kind of support they had received. The most common themes raised in relation to this were over-medication and poor access to psychological therapies, with several people mentioning both issues in their responses." Quote: "I feel services are institutionally racist as black people are over-prescribed medication but deprived therapeutic talking treatment.” Another quote: “We don't want medication and drugs, just to receive talking therapy to know how to deal with demons. Access to talking therapy for black people seems to be non-existent.”

Now those are the reports, but the point I'm trying to make is that the parameters of the issue have been going for decades and report after report, consultation after consultation, whether its the voluntary sector or the Department of Health itself, much of what was said in 1989 in Aliens and Alienists remains absolutely true today. Of course today we're facing a further challenge with the reorganisation of the health services. So I think its really important to flag up what the challenges are and to say "we cannot continue to stand still in effect on this issue." Now I don't take anything away from the community groups, the voluntary groups, from the individual doctors and nurses who trying their very best, but if you look at the overall stats the lack of progress since the 1980s is frightening. There's many aspects of mental health we have improved but when it comes to race and mental health the big issues remain the same.

So having outlined what I think the issues are where do I think we should go on this issue? First of all it involves a long struggle to get statistical knowledge of what's happening in the NHS on mental health, the government seems to turn away from statistical knowledge and I think it has to be a priority to keep the figures again because as I said earlier, not counting a problem doesn't make it go away but it does make it easier to ignore it. I think, and I've thought it from that very first meeting with the heads of psychiatric services in Hackney in 1988, that we do have to look at the disparity between the demographics of the senior people in the psychiatric system and the demographics of the client group. Because that disparity is a long disparity and 60 years after people started to migrate to this country after the war there's no real reason why that disparity should remain. We need to see a decision-making cohort around mental health, in London certainly, that looks like the population they're supposed to be serving. The other thing which I think is absolutely key, and here myself and the CSJ agree, is about the importance of working with community groups, particularly the black-led churches. Because the truth is that the black-led churches are face to face with more members of the black community on a weekly basis than any arm of the health services. The health service needs to work with community groups, it needs to work with the black-led churches. The resources need to be found to support the community-led initiatives around mental health that exist in communities around London and all over the country. Although I would say this: community led projects are vital, I think they've done some excellent work, but they do not compensate for a failure to mainstream a concern about black and minority mental health in the mainstream system. When there was money community groups and those sorts of projects got money and that was all well and good, but of course when there isn't money they were the first to be cut.

So I'm not saying community groups haven't done vital work, but alongside them these issues need to be much more mainstream than they are. I was public health spokesperson for 3 years, I got weary of going to meetings to discuss these issue where no one was talking about black mental health, and I was often the only black person around the table. So I think these issues need to be mainstream, and I think that for the personnel from the voluntary sector there needs to be permanent positions in the health service for them, because it seems to me that that expertise and that understanding are lacking. So I'm huge supporter of the voluntary sector but the thing that you just throw money at the voluntary sector when there's the money, but when the money isn't there you cut it and you're actually looking at a mainstream mental health system where we're not reflected and we're not represented I think is slightly tricky. But as I say, and a number of the reports I referenced talk about this, we need to work with the community on a level of mutual respect and one of the problems with that putting money towards these groups has sometimes worked is it can put, I'm not saying it does, but it can put these groups in what they call in Jamaica a kind of licky licky situation. Its where they're so worried about the next grant that its very hard for them to say "actually this isn't quite right" "this is wrong" "we want this." So there has to be a balance between funding community groups that can often do innovative things and often have a particular relationship with their communities but making sure this stuff is mainstream both in terms of policy and in terms of senior people at every level being part of the decision making apparatus because otherwise community groups are left vulnerable in the long term.

The other thing people need to understand, which isn't widely enough understood, is what a different world we're in after the NHS reorganisation. I don't wish to be judgemental, but I will say this, before the NHS reorganisation there were whole range of issues which were essentially centrally driven. So it was possible to persuade a minister or someone senior in the NHS to do something and it would happen. What has happened post-reorganisation is there's a lot more power in localities, the CCG, the groups of GPs that commission a lot of services, and local authorities and public health. As many of you will know public health has gone to local authorities, they have a guaranteed budget for two or three years. In principle having local GPs and local directors of public health making decisions is a very good thing, but I would just say a couple of things. One is that people who have campaigned on these issues are going to need to pivot and direct their campaigning at localities, at the commissioning groups that have the power to commission services, at directors of public health, live and direct they have to target them. I think people are still adjusting to that reality, its not a question of going to Richmond House in Whitehall, its a question of targeting the local people that now have the power and the budgets. Not to say that many of these local groups aren't doing these things because they are, but there's more to be done.

I also think this: in principle it's absolutely excellent that local authorities have powers over local health and that they have budgets, not least because if local authorities are dealing with mental health issues, including issues around mental health they are better placed to achieve the kind of coordination that is required in health. If there was ever a part of health that was about social determinants it's mental health. If you put public health at the local authority level they are potentially better placed to have early intervention in mental health and school, to look at housing, to look at all these social determinants of mental health. The problem is that local authorities have got these powers and new money at a time of unprecedented financial pressure. What has happened is what I said was going to happen when I was speaking on public health, and it's clearly happening, is that although this money is allegedly ring-fenced is that what look authorities are doing is using it to backfill cuts they've had to make in their wider budget. I've had local authorities tell me they're going to spend it on environmental health, fair enough, social care, I understand that social care is a huge issue for local authorities, and then I've had some tell me they're going to spend the money on gritting roads. Because the way the government talks about it is that if the local authority says this is a public health issue they can spend the public health budget. So I've had local authorities say if they don't grit the roads, people fall over and that's less pressure on the health services. I've had some spending the money on houses of multiple occupation, fine. All those things are worthwhile things but if local authorities are using their public health money on leisure centres, on social care and so on, that means that there is less money for core public health services, including mental health. The point I always put when I'm speaking about mental health is this: when public health goes to local authorities, the people making decisions are local councillors and the problem there is that on the one hand they're close to the community but on the other the public health timetable, including issues to do with mental health, is 10 years to a lifetime. You don't see quick outcomes spending money on mental health, but the political timetable is 4 years. For some local authorities outside of London it's 1 year, because they have elections every year. I was a local councillor, I have good friends who are local councillors, and you have to do imagine if you're a local councillor and you have a limited amount of money to spend on issues like mental health and sexual health. You have to choose, "do I spend my money on a day centre for mentally incapacitated young men who only a mother could love, who aren't going to vote, or do I spend it on tea dances for pensioners, who certainly will vote?" The new localism is all very well, but it leaves out issues which affect parts of the community without social capital, it leaves them exposed. This means that the importance of addressing one's campaigning and pressure to local authorities is vital. The new powers for local authorities and the new localism in health opens up a lot of really interesting possibilities. The problem is that 'unattractive' issues, and I put that in inverted commas, the problem is that they may get left behind. The only comeback the community has is when there's a council election and of course people don't vote in council elections on what people are doing for public health, they vote on parking or whether they like Ed Miliband, they don't vote on what's been done on mental health.

So I think that mental health in particular is something that people have to be really focused on or we're going to see, not even a lack of progress, but a falling back on advances on some of the projects and some of the work that people have fought for over the past decades. I suppose some of the issues around black people and mental are general issues that are perhaps heightened in the case of black and minority ethnic communities. A huge issue is stigma, which applies to everybody. We have a very good debate in Parliament about 18 months ago about stigma, because if you have been mentally ill you weren't supposed to be able to run as an MP. You could be almost anything and be an MP, if people were prepared to vote for you, but you cannot have ever had mental illness. We had a very touching debate on that where MPs from both sides got up, and admitted for the first time, on the floor of the House of Commons, that they had been mentally ill, and we actually changed the law. So there's the issue of stigma, and I think its a huge issue for members of the black community. Also the sense of a permanent stigma, its not a phase like if you've broken your leg, where you have a broken leg for six months and then you get better. I think the thing that is so frightening to people, to all people, but notably to black and minority ethnic people is the sense of permanent stigma which is something I think we have to break down.

The other thing to say, and I won't expand on it, is that there's no question when you look at mental issues that one of the variables are the external pressures on individuals and communities. There's not questions to me that we live in very difficult economic times, no matter how you chose to analyse the, that it's even harder for communities and that must have an effect on the incidence of mental health. This think tank, the CSJ, was set up by Ian Duncan Smith, the Secretary of State for Work and Pensions, so I will say nothing rude about it him, because I promised them I wouldn't. But as I say, mental health, like a lot issues, cannot be taken in isolation from issues around educations, from issues around employment, from issues about how the welfare system works.

So if I can draw the threads of my remarks together: black people and mental health has long been an interest of mine I haven't got as far as I'd like in an office going back 20 years. I think it's never been more important to point out how little material progress there's been in relation to the way the black and minority ethnic community thinks of and relates to the mental health system and this is despite the many people in the voluntary sector, many individual doctors and nurses. Its never been more appropriate, partly because the pressures on communities is greater than ever, and partly because the reorganisation means that there's all to play for. Its a longstanding issue, its not an issue which politicians talk about. I can't tell you the last time I heard a politician, certainly in recent years, talk about mental health. But black people and mental health? Outside of seminars people don't talk about it and yet in London if you walk around these wards and see what you see, are we to say we are writing off these people? Are we to say that we're abandoning mother's sons? Is that what we're saying? People who may well find themselves in the mental health system, maybe because of an individual frailty, but maybe because of the pressures they face. One of things I read in preparation for this talk, I think it was called Aesop, and they did a longitudinal study of schizophrenia in the black community and what they found is what we all know, which is that the diagnosis rate in the black community is much higher than in the white community. But they also did, by way of comparison, a longitudinal study in the Caribbean, and there they found the levels of schizophrenia amongst black people is exactly the same as amongst white people in the UK.

So are we to abandon those people in those wards, to the neglect and indifference of the system? Are we to abandon mother's sons? I think that if we're talking about the 'good society' this issues, about black people and mental health, has been swept under the carpet too long. I believe that if London at least, where half the UK's black community lives, it would be important to have a strategic push on these issues. Who knows, there might be a mayor of London in 2016 that would be prepared to do this. I think the issue is not even the individual circumstances of the individuals that find themselves within the mental health system, its not even about the tragedy and misery of the families of those people, its about what kind of society do we say we are? What kind of people do we say we are? The test of a society is how it treats the most vulnerable and there are few more vulnerable groups as I speak to you, than black people caught it what can be the Kafkaesque world of the mental health system. Thank you for listening to me, I hope we have a good debate.

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