Welcome to the February update of my Lewisham BAME carers forum. Out of all the carer forums and peer support groups I run, this one focuses on BAME carer experiences and challenges. The forum although focuses on Lewisham, BAME carers from outside the borough are welcome since there is a lack of BAME carer networking groups, especially BAME carer-led forums. I might even consider changing the name to Bromley, Lewisham and Greenwich BAME carer forum since I am very active in Greenwich and the actually BAME carer forum is fairly linked to Bromley, Lewisham & Greenwich Mind via the Community Wellbeing Hub.
For February our speakers were.
Dr Shubulade Smith CBE Psychiatrist from South London & Maudsley.
Dr Shubulade Smith CBE is a British academic and consultant psychiatrist at the South London and Maudsley NHS Foundation Trust. She is a senior lecturer at King’s College, London and Clinical Director at the NCCMH and forensic services at SLaM. Dr Shubulade is a heavy supporter of BAME causes especially due to her field and experiences, so it was an honour to have her engaged with BAME carers.
Danielle Perlman is a senior Project Manager at SLaM NHS trust and is passionate about engaging with the community with the South London listens project. More on that later.
We had other attendees some from other NHS trusts including Oxleas, West London and some from Manchester NHS trust interested in BAME engagement initiatives along with our regular BAME carer members. One of the members from Public Health Lewisham wanted to raise that part of her portfolio of work focuses on black, Asian minority ethnic and health inequalities. Which covers a range of issues, including mental health, and the kind of work that Lewisham Public Health are doing around COVID-19 specifically within their communities. This also being obesity and cancer as well. The Public Health Lewisham representative was interested to come to this group on a regular basis, and is available if anyone ever needs to contact her about anything that they’ve got regarding questions or queries about within the local public health.
Other reps were from disability advice Lambeth, those who attend the PCREF BAME network group and so on.
Dr Shubulade Smith Presents Importance of improving outcomes for the BAME community.
Dr Shubulade Smith felt she was asked if she present about the situation of the mental health of black people, How she feels it is a major concern for many of us. So she was going to give us a quick overview. But she was just going to talk about black mental health, what the issues are, and a bit about the impacts of social factors and racism. Where we then get time for questions. She hoped most of the attendees knew that there is a real problem, because there’s a profound inequality and that inequality exists for people from black, Asian and minority ethnic communities. This is especially for all people who, when it comes to mental health, are from ethnic minority groups.
Obviously, there are issues for people who have also have protective characteristics, as she pointed out, but there’s a particular problem for people from minority groups. And that is particularly that they’re over represented in crisis and secure services. And that’s especially safe for black people, but also underrepresented in treatment. So if you’re from a white British background, you’re twice as likely to receive treatment for mental health problems. And if you’re from a ethnic minority background, particularly if you’re from a Caribbean background, or if you’re from South Asian, South Asian background. One of the things to notice, of course, is that in fact, it doesn’t matter who you are actually, accessing mental health care is pretty difficult where Dr Shubulade showed us some stats.
Dr Shubulade concluded that one of the big issues the challenges for BAME community to be referred for, you know, psychological therapy or psychiatric care. Likewise, if you’re that Caribbean heritage, you’re much less likely to be offered improving access to psychological treatments as much as it should be. Dr Shubulade wanted to make these factors known because people to at least give an idea why outcomes are so poor for BAME community wellbeing and members understand what the issues are. The fact is that there are we know that there are many different factors that increase those froma BAME background developing a mental health problem.
Genetics and family history are important, including perinatal factors, that means all the things that happen around the time that we are born. So if your mother is exposed to certain toxins and viruses, the fetus might not develop in order to develop properly or there might be something that happens that impairs what’s called neural development. That’s the development of brain malnutrition, for example being malnourished doesn’t mean necessarily starving. It can be being deficient in certain vitamins for example, and obstetric complications. These are the if you like biological factors that increase your risk of developing a mental health problem. I put those in blue, because they’re fixed, there’s not much you can do about those.
Dr Shubulade pointed out that most mental disorders that we see, however, are related to other factors that are not things that necessarily have to happen. So trauma and physiological, physical, psychological, it could be a psychological trauma, could be a result of emotional trauma, physical trauma and sexual abuse, and adverse childhood experiences. Plus it could be things like having a bad accident or parents splitting up. These are adverse childhood experiences, early and or persistent substance use. Dr Shubulade mentioned that if you start smoking cannabis, from the time you’re in your mid teens, then the risk of developing a psychotic disorder by the time you’re 25 which is five to six times higher than usual negative life events as an adult.
CAUSES OF MENTAL ILLNESS
So when it comes to bereavement, job loss, moving house, homelessness, financial difficulties, all of these associated mental health problems, social isolation we’ve seen, particularly in the in the signs of COVID and how it impacts on people’s minds. Dr Shubulade just wanted to make sure that people had a better understanding of what goes on. People have massive fears about psychosis. When they hear the term psychosis, it’s often misunderstood. It essentially being detached from reality and it’s characterized by a person having delusional beliefs and or hallucinations. Dr Shubulade mentioned it doesn’t mean being violent or anything like that. delusions, inhibitions. hallucinations have very specific definitions. Essentially, a delusion is a false belief, it’s held with really strong conviction, despite the fact is evidence to the contrary. it’s out of keeping with the person’s cultural, personal, religious, familial background. Dr Shubulade continued with stating that a hallucination is when you have a perception in the absence of a stimulus, so you hear a voice, but there’s no one speaking.
There are different types of psychosis, you could get organic psychosis. So you’ve got a tumor sitting in your brain, and that affects a certain part of the brain, the limbic system, and that happens if you are taking drugs, and can lead to psychosis. Drugs can frequently cause many psychotic episodes and sometimes you can get a drug related psychosis or you get a persistent psychosis as a result of persistent.
You can have a schizophrenia type psychosis, that is psychosis characterized by particular types of conditions and particular types of divisions, you get manic psychosis when there’s a big mood component. So people are very high and elated and very grandiose can get depressive psychosis, where people are very, very sad and nihilistic and thinking that things are terrible, and everything’s going to just be horrible and die and they can become catatonic. You can get catatonia in schizophrenia and mania and depression as well.
The reason Dr Shubulade was just telling us this is because she thinks there’s often an assumption that psychosis is schizophrenia. It’s not just to say that the biggest risk for developing schizophrenia is a genetic one. In fact that if you have an identical twin, then you have an almost one in two chance risk of developing schizophrenia. Just in terms of prevalence, that means how frequently it occurs across the world.
RATES OF PSYCHOSIS IN BAME AROUND THE WORLD
Dr Shubulade mentioned we know that wherever you are in the world, where in white majority countries basically the prevalence of schizophrenia, psychosis certainly is 1%. Interestingly, that’s one in 100 people. And that doesn’t matter where you are. Interestingly, the lifetime risk in less developed countries is lower than it is in developed countries.
Dr Shubulade pointed out that very interestingly, it’s been found again and again and again, that the rates of psychosis in black people in white countries is much higher than you would expect. it’s higher than the majority white population. And it’s higher than this 1% prevalence and in the UK, for example, it is thought to be at about 4% to 5%. So one of the questions is, why is that? The problem is that people often say “Oh, This is schizophrenia.” But what we know, there’s been loads of debates about this over the years. And we know that unfortunately, those debates have kind of been so polarized, it’s either it’s been from one extreme to another, where it’s that people are being misdiagnosed full stop, and don’t have any mental health problems, any more than anybody else, to black people have schizophrenia, because they’ve got a genetically that they’re genetically predisposed to that.
Genetics and Schizophrenia
Dr Shubulade mentioned a study where they follow those people up for the next 10 years and what they found is that the rates of psychosis over time have changed. In fact, they’ve increased, but they sensibly looked at the rates of psychosis in different ethnic groups and the found was that there was a difference in the rate the change and in the rates of psychosis over time. So for the white patients the rates of psychosis have actually increased over time. Interestingly, the people of black Caribbean heritage, even though the rates of psychosis decreased, they’re still higher, but they had decreased over time. That was only a 10 year period. What that tells you is that that actually, these differences that we’re seeing cannot be genetic, because if it’s a genetic cause, then they couldn’t change in such a short period of time, because genes take hundreds and hundreds of years to change. They don’t change in a period of time in a short time together 10 years.
It’s likely that psychosis is heterogeneous which means it’s different types of conditions and number of conditions with similar features caused by different things. That means there’s a range of factors that combine to cause it, to push us into psychosis, there are different routes into psychosis, your genes might make you vulnerable. But just because you’re vulnerable to psychosis doesn’t mean it’s going to happen. If you’re born prematurely, it probably increases your risk. If you abuse drugs a lot probably increases the risk.
Dr Shubulade mentions something that relates to my mothers experiences
Dr Shubulade mentioned that we know now there’s a range of early social and psychological adversity, such as separation and parent being a migrant, growing up in a new difficult community. As the migrant grows up in a city being bullied or abused (think of 1960s racism). Basic equity and discrimination all seem to be associated with an increased risk of psychosis. As Dr Shubulade spoke of these terms, my attentioned turned to what my mother went through due to the above and how this could have contributed to her developing Schizophrenia in later life.
Dr Shubulade stated that for certain ethnic minority groups, it looks easy to go on to social media and chat boards, where you see people saying that they’re going to vote for sector services, because for help with eating disorders, it’s not that people aren’t attending mainstream services. E.g. For Attention deficit hyperactivity disorder (ADHD) those are higher rates and ADHD is something that is very commonly seen in people in prison. ADHD is the kind of thing that means that you can’t, stay on at school very well, and you have difficulties. But if you get help for it, when you’re young, you don’t end up being at the different school, you end up giving being given support. If it’s not recognized, you end up being labeled as a naughty kid and being expelled.
Where Racism fits in all of this?
So what about racism? Is that a risk factor for mental disorder, there of course are different types of racism such as individual racism which is personally mediated. We also have institutional and structural and is internalized, Dr Shubulade reminded us that individual racism is the overt or covert racism, it can be intentional or unintentional. Prejudice is based on the assumptions about the abilities, motivations and intentions of another person according to the race. Discrimination is the actions and behavior that you do against that person because of your negative assumptions about them. which can manifest as a lack of respect. So you know, shopkeepers watching you when you walk around the shop.
Dr Shubulade stated that as a senior doctor, it doesn’t matter when she goes to the shop, because of her race there can always be a situation where security follows her around because they think she will steal something. And that’s not, that’s simply because she a black female, devaluation being surprised at a person’s competence. This happens to her to a point of dehumanizing experiences, because people think that if you’re black, you must be super strong, like an animal or something.
Dr Shubulade reminded us that very recently, some really tragic instances that have happened in the nation, you know, what happened with Kevin Clark.
COVID and Race
Dr Shubulade continued to point out that know lots more black and Asian people have been dying from COVID. And yet, we saw right at the beginning that that was kind of dismissed and not thought about why that might be. If it was thought, or maybe its genetic. I mean, I always like to use the term BAME, because I think that it kind of makes people forget that these are all different types of people, black people, Asian people, Filipino people, you know, do it Orthodox Jewish people have all had genetic differences. But there also was social factors. Dr Shubulade mentioned these are associated with an increased risk of developing mental health problems not just the COVID situation.
People can’t get access to health, work and social support, and if you get access to employment, it’s no employment or poor quality employment. Its difficult for BAME community to get access to the same medical services depending on the same environment that you live in. And very importantly, there’s a reduction in access to power. So there’s a difference in access to power, including access to information, the information about your own history, not just one part of it, and difference in access to resources that includes wealth and organizational infrastructure. And very importantly, access to voice your situation. Dr Shubulade felt that we have seen this very much in America in the leading up to the elections, where whole parts of electoral wards were discounted.
Not only just to say about social factors, but social structures that we have, which have been around for hundreds of years. People are used to them, they have become institutionalized.
QUESTIONS FROM MEMBERS
One carer member raised the point that it was an really interesting presentation, because there’s a number of factors in there that cross over into some of the work that they themselves had done previously. The carer was interested about the rates of psychosis that have decreased over that 10 year period. Is that drop those rates? Is that related to medication? Because medication has been changed? Or what was the reason for the drop?
Dr Shubulade responded stating that it is incident rates, so that what that means as in new cases of psychosis.
Another carer wanted to know what Dr Shubulade is doing to support the carers of the patient be it under psychosis or to stop carers from becoming the patient? And mostly, how is she showing that they’re being treated equally as carers?
Dr Shubulade pointed to The Patient Carer Race Equality Framework, she reminded us that the word “Carer” is in there. The way the patient care race policy framework works is that first step is you go out to the community to find out what their needs are. With SLaM there’s already work on partnership groups between each of the boroughs that SLaM serves. Those partnership groups consist of people who are people with lived experience for themselves as individuals, patients, but also carers as well. And in fact, there might be more carers than patients who are involved in each of the four groups. So already, there are carers who are involved in the engagement work. Some have been trained in some of the processes that you need to be able to understand how to make change. So quality improvement techniques, and committee work. and they are all involved in the different work streams. So one is about developing competencies. One is about engagement work. One is about dissemination.
The carer pressed the matter and felt the reason why they asked this question is that they never see many statistics on how carers are being supported. If you show them these great statistics regarding our service users when will there be statistics to show that carers are being treated equally?
Another carer member mentioned what she noticed in housing estates, going to school, seeing her peers, especially young black boys, who were extremely, highly clever, in the middle of their a levels, dropping out through mental health, getting schizophrenia, and committing suicide, it’s just unbelievable what she has witnessed. While this is going on, she mentioned the Dr’s evidence is based on percentages, so portion of people will have certain outcomes. And the problem is when you get the budget for this ever decreasing “moving” budgets, more equally of these different groups, what can happen, you’re actually moving smaller budgets. So your actual outcomes in numbers might actually even be less than. So people will then say to you, oh, well, you know, proportionately, you’re doing better. What’s your problem?
Another BAME member mentioned how they were heavily involved in SLaM’s PCREF meetings, but the crux of what came out today, for them is it’s never presented in the other PCREF presentations. There is not sufficient space for members to practice free speech, basically, because it’s very structured, because there are elements within these PCREF groups that still are being controlled. And still somebody having more power than the people that the measures are supposed to be impacting, or they’re supposed to be engaging with, which means decisions are made. And so we are not aware of because the system has an agenda. It is like SLaM has to get things done in a timely fashion. And if we as business people, other people, and other things don’t have the time, because it’s not a full time job. We’re not included.
The BAME member went on to conclude, that even as a community leader, the people are heading up and running, setting the agenda that disseminates the information. Because as if we don’t have the resources, because we’re all giving our time for free. What we’re hearing through these meetings is that they’re recruiting activists, there are forms that everyone has to sign up to, to say that we’re an activist, and that’s what they are hearing about a lot. When they asked for what’s their definition, Slam’s definition of an activist, there just does not seem to be a definiation
The forum member felt offended when they heard “join us” at the peak of activism thinking, a lot of us have been doing activism all of our lives. We’ve been doing this all of our lives and so to hear such a corporate organization say to them after so many years was offensive.
Dr Shubulade felt it was the community driving the PCREF project, but did insist that members of the PCREF group not give up on engaging with SLaM. Dr Shubulade felt PCREF is a competency framework and the idea for it, is that it is a how to make to make a difference that the BAME forum member mentioned was like building up assets in the community and having the community lead or work together with SLaM. Dr Shubulade felt there is some way to go, but we can all make a difference.
Dr Shublade concluded that she need to tell the group that right now, there has never been an opportunity like that is now to make a difference. And she would ask people to persevere. She feels it’s not a straightforward process and it is a new, although the idea aren’t new, but the process is different and it may be something that there’s always going to be someone who seems to be driving it and that someone isn’t always it ought to be. But gradually over time, things will change.
Danielle Perlman presents South London Listens
Danielle started her presentation by commenting on how she feels Dr Shubulade is amazing. And she was really taken aback by seeing her presentation and hearing all the engagement in questions. So in a way, she is very glad that we spent more time on on PCREF. And talking about it because she thinks it’s such an important piece of work.
Danielle wanted to engage the BAME carers group on the ‘South London listens’ project
Danielle also wanted to give a shout out to Brenda because she made a friend last year when Brenda did Mental Health First Aid training together. Since then they have kind of been each paths having crossed last time they met when in the Lewisham ‘South London lessons’ event which was held by local leaders in in collaboration with ‘CitizensUK’.
Daniele then described who are citizens UK, they are a community organizing, and national charity, and working on bringing people together to share stories and experiences to bring the change on what matters most. So what they are talking specifically in South London listens, which via the ongoing pandemic we are all experiencing and how that is impacting not only our physical health, but mental health within our communities.
Danielle wants to be asking key questions around what in relation to pandemic is putting pressure on communities mental health, and what can we do to support our communities. South London Listens came out of a number of sites that we that we held last year to work on engagement not within our SLaM services, but within communities. This is so when people are starting to experience a decline in the wellbeing, what can we do to be more supportive? Because that was on one of our psychological resilience. So far We’ve listened to 4000 people across the whole of South London, including SWLSTG NHS Trust and Oxleas NHS Trust. Essentially, when we say we’re listening, it means that people have been trained in the techniques of community organizing. So we’ve trained 350 people in the methodology of listening.
Normally, we’ve all been online, since usually we would be fully face to face, but it’s not in person or house meetings. Moving on Danille wanted to asktwo key questions where we give everyone in the group the same amount of time to contribute. The BAME carer forum moved on to a workshop where members contributed to the following questions.
The first question that was asked is in relation to the ongoing pandemic and lockdown that we’re experiencing and thinking about our well-being, what has been putting pressure on you, your family and your community?
The second question was what could really what could relieve the pressure and each of us would take a minute to contribute and to share something about our experience around the 2nd question.