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Mental health: ethnic minority experiences

Messages for professionals about mental health

We asked people what they thought was missing from mental health services and what advice they would give to doctors and other health professionals (also see 'Suggestions for improving service provision for mental health'). They provided some very clear messages based on their positive and negative experiences of services (see 'Outpatient & community services for mental health'). It is important to note that many people felt that other people with mental health problems should trust and work with their doctor (see 'Messages for others about mental health').

1. Listen without judgement
People with mental health problems are often unheard or misunderstood. The people in this study emphasised the importance of professionals listening so that they can truly understand more about the person they are treating: “Listen to the patient. That's the most important thing. You don't live in their head, they do. End of.” They felt that listening properly involved giving people time, asking questions and making them feel comfortable enough to talk. In particular people wanted a doctor who listened carefully without making judgements about the person: "Diagnosis was never designed for professionals to make a judgement on a person. It was designed to make a judgement on medication, not on people and what services they should or shouldn't access” [See Jay below].

 

Niabingi compares professionals with a plaster - they help people to heal. She says listening and...

Niabingi compares professionals with a plaster - they help people to heal. She says listening and...

Age at interview: 42
Sex: Female
Age at diagnosis: 25
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Mm. [Exhales] Oh, well oh dear' oh if I had to give a message I would say' something like one in four, the statistics are that one in four people will suffer mental distress or mental ill health at some point in their life. Some will recover, that is a known statistic, I think MIND brought it out a couple of years ago, that is a known statistic. So' some will recover and some, for some it will be a one off experience, and for others it will be a, something they're battling with like a life long, a life long experience that they're battling with for the rest of their lives. If I had a message' I would say try and have some empathy, not sympathy, not pity, but some kind of empathy, try and put yourself in their shoes and most people will say, 'I'm a little crazy anyway, you know, I mean I'm', you know, most people know that, you know, nobody is completely straight, you know. So it could quite easily happen to you. I would say' try and identify in some way with your client, with your, you know, with your service user try and identify. 

And if, and even if you don't, if you're having difficulty identifying, just try and listen, I know you've probably heard this a thousand times but, you know, just try and listen to what they're saying. Make them feel comfortable enough to tell you what they need to heal themselves because, you know, I mean I think the service is a bit like a plaster, you put the plaster on top of a wound but really the healing comes from within the body, you know, it is, you know, the plaster might cover the wound from infection or something but the healing always comes from within the body, the plaster can't actually heal. So, so the services and the professionals are like a plaster they're, you know, they sort of sit on top and aid the healing, they aid the healing but the healing will come from within that person themselves. So remember that, you know, you're not doing the healing, you're just helping and aiding that person to heal. So listen to them, generally make them feel comfortable about expressing themselves enough to say what will heal them, what is ailing them, what will help them.

 

Devon believes that the system makes it difficult for professionals to listen.

Devon believes that the system makes it difficult for professionals to listen.

Age at interview: 49
Sex: Male
Age at diagnosis: 22
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When people are interested in me. Or people say, you know, they want me to, they say, 'Devon I want you go on this board or I want you to speak at this meeting.' I'm thinking thanks very much, you give me a chance to speak. And that's important in mental health. And so that's what I'm saying, one of the important things in mental health, is actually listen to what they are saying. Attention. Give them attention. Because in my experience of mental health system. You might say, the doctor say, no the nurse might say, 'You can't go into the kitchen and drink the milk, Devon, from the machine. You keep drinking the milk. I am going to lock the door.' He's not hearing what I am saying to him. He's doing what he wants you to do. I'm not saying I want the milk in the kitchen. I'm saying, I'm saying something else. But he's not hearing me. I'm saying I want something. Can you give me something, but he thinks I want the milk in the kitchen because I am going into the kitchen. So he locks the door. 'Don't go outside the ward, Devon, you are on section and we don't want you to go out there.' 

He's not hearing what I'm saying. I don't want to go outside. I said to him, 'Can I play my music. I want to hear my music. I want my Mum to bring some of my music in. That is what I would like, to get my music.' But he's not listening. He's got lots of things to do on the ward that day. He can't cope with it all. And even to this day when professionals are working here like [name removed]. The way how to do it, like, you have got to keep say to them, I want to, keeping saying to them, and one day it triggers off and hear what you're saying. They've got loads to cope with. It's not their fault. Most of these things, people have a go about their consultant and the doctor. It's not their fault why these things are happening. It's the way the system is. It's the way of the system. It's way the system has been done, you know. So the important thing is they listen to what people are saying, especially the people who have the illness. They should listen to what they are saying. But they don't listen to them. They just make presumptions. Because of the label of they have been given them. They look at a label. 'He's paranoid schizophrenic. So we put him in that category, he must be saying this.' Not necessarily. Things can change. Actually listen to what he's saying. Look at what he does. Look at his care plan. And listen. Yes.

And now people are beginning to listen to me and that is what makes me feel good.

People wanted to be believed and taken seriously by professionals. This was seen as important in keeping a good relationship with the doctor. This was particularly important to one man who had been wrongly accused of not wanting to work. He was keen to point out to professionals that “most people that you encounter are not malingering”. People also felt that empathy, both in adult and child mental health services, was important.

 

Edward feels people need time to talk and says challenging the patient's delusions may undermine...

Edward feels people need time to talk and says challenging the patient's delusions may undermine...

Age at interview: 59
Sex: Male
Age at diagnosis: 20
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I'd say to the psychiatrists when you're dealing with someone like me, don't argue with the main delusion or the main prevailing delusion talk about something else until the patient has calmed down about that main delusion okay because the people out there in the public, you know, the ones who haven't had the training they'll always confront the main delusion say looks that's not right, you know. Like my son was deluded that you could get online without plugging in the phone and all this sort of thing, you know, because he was looked at the saved images from the, I forget what it's called that file that saves the images of the last website you went to. So you mustn't confront his or mine or anybody else's main delusion, you must steer away from that main delusion and concentrate on other things and let the person talk, okay? That's the first thing I would say and then the second thing is make it clear that you believe what they say, very clearly that you believe what they say because if you show or hint that you don't believe what they say then that's, then you've undermined your own authority in their eyes and therefore that makes the repair process a lot, a lot more difficult and a lot more long term. that's all really.

Listening does not only have to take place in a one-to-one consultation: a few people welcomed the opportunity for public consultations. People also felt that the same weight could be given to service users' experiences as teachers and books in mental health professionals training. One man suggested to his mental health trust that they recruit psychiatrists with personal experience of mental health problems to equip them to better understand service users.

 

She'd like health professionals training to involve people with mental health problems and...

She'd like health professionals training to involve people with mental health problems and...

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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And what about messages for health and other professionals?

'I think you need to hear, when you're studying your subject, you need to have equal time, listening to service users as well as just, you know, your teachers and your books. You, like your, your experience and your work, be'  truthful really, you know, you're relating to other human beings, you know, don't use your kind of use your, your professional role to step up a few steps away from your, your, your client. You know, look them on the level, they're your equal, you know, even if, you are taught otherwise, they are your equal' You know, speak to them as a human being, you know, as if you are speaking to someone you love, like you are speaking to your daughter or your son or your, your Mother. You know, it's to, you know, relate to them' you know, let, you know, let them understand that they are not alone.
 
 

Anton says it would help if psychiatrists had personal experience of mental health problems...

Anton says it would help if psychiatrists had personal experience of mental health problems...

Age at interview: 64
Sex: Male
Age at diagnosis: 45
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The other thing we always ask everybody is whether they have any messages for health or other professionals?

Well this is what I told one of the consultants. Of course, sometimes I tell them because I feel so bad these days. I don't mind telling them. I told one of the consultants, 'Well when you become the clinical director and you want to recruit psychiatrists for God sake recruit psychiatrists to deal with depression who has suffered depression, then they will understand. Otherwise it will be all theory, they say take this tablet and go away. It will take one month or three weeks. And then if it doesn't come back for another tablet.' This depression is an invisible illness. It can be only understood by people who suffer, unlike any other illness, so it is very important. I bumped into a few medics who suffer from depression. Oh I love sitting down and yapping and for hours and hours, because you feel you are talking to someone who understands, a common cause. But other people.  Waste of time, you are just wasting your breath. So this is one thing they have got to help the services to deal with. Unlike physical illness, this is it, and plus they've got to sit down. Now some people, if the people aren't articulate they can sit down and really go to town and ask them. Not just five or ten minutes or something, really go to town and ask them. Because the diagnosis depends on the information they give. Nothing what they see. Now if you go with any other medical' a stethoscope, they could take your blood sample, and then may be it is it. But not depression though. So if that sort of a thing was done, then people wouldn't commit suicide and people will feel better. Otherwise the same old thing, you know.

And what kind of difference do you think it would make, if say for example, your psychiatrist has his or her own experience of depression. How would that help? 

Oh they would understand the hell we go through. No one can sanitise for your pain, the hell, the mental pain you go through, you can't describe it. When I go through, 'Oh my head'' [gestures at head] no one can describe it. You can take paracetamol, Nurofen, nothing is going to happen. You can't describe it. Then if they know all the hell they go through, then they would take it seriously, and then they will say, oh let's put more resources, let's see how we can do something about it.

2. Treat everyone as an individual but treat the whole person
Many people emphasised the importance of being treated like an individual and a human being. In this vein, they didn't want professionals to make assumptions about people based on their diagnosis, but to remain open-minded about them, their abilities and their treatment.

 

Jay says to professionals: "Stop seeing diagnosis, see people".

Jay says to professionals: "Stop seeing diagnosis, see people".

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It's like what we say on the project, and it, it really is the ethos of, of how we work, 'Stop seeing diagnosis. See people.' It's the bottom line. If you base your interaction with another human being on what somebody has said they are, you're going to fail, you're going to fail that person. Because you need that person to show you who they are. Then if you want to read what somebody said about that person when that person spent ten minutes in front of them six months ago, has got to say, then read it, read on. But don't allow it to cloud your ability to see another human being. Okay, some people can be quite severely disabled by their condition and they can have quite extreme illness or, or, or manifestation of their illness, and I accept that. But still you need to see a person. Because I have people who get labelled as being disruptive etc and so forth based on the fact that they're loud and they're colourful and they're quite overpowering. But that's their personality. It's not their illness. But then these traits are likely to be seen as people's illness, not their personality. Not everybody's the same. Just because somebody wants to wear seven different colours in their hair, that doesn't make them antisocial or over expression of their self or whatever they want to say about that person. That just makes that person an individual, like to be an individual. If she had 10 million she'd be eccentric. No one would say that she was mad. They'd say she was eccentric. So it's as simple as that. Just see people before you see diagnosis. Diagnosis was never designed for you to make a judgement on a person. It was designed to make a judgement on medication, not on people and, you know, what services they should or shouldn't access. 

You know, I've seen people come in my door who have got depression and who are on GP care and they're far more disabled than someone who's registered to have paranoid schizophrenia. Do you see what I mean? It's, the, it's so fluid, it's absolutely fluid. And the depths are unknown. It doesn't matter which direction you go, the depths are unknown. So you can't just decide because that says schizophrenia and that says manic depressive or bipolar or whatever it says. I mean schizoaffective disorder. Well, what the bloody hell's that? I mean' I accept it has been given to me. 

I don't often get a present, so I decided to take it many moons ago. But what does it mean? What does it really mean? It can mean near enough anything. It's like a, a non-description as it were. Basically what it means is, 'I don't know. I don't know. I don't know.' But that's fine if it helps people to understand me to a certain degree. But that isn't me. That diagnosis isn't me. And the amount of people now I've met who's got that diagnosis, I don't know how we fit in the same box. I don't know. Just based on what? You know, our experience of mental health has been different, medications are different, you know, walks of life, backgrounds, different, general temperament. It's all different. But we've all got the same diagnosis. I was thinking of having a schizoaffective disorder party, and you have to bring your diagnosis for entry, make it special one day [Laughing].

But, yes, it's, it, that, that is my constant message to mental health professionals, 'Don't see diagnosis. See people.' Once you see people, you're going to actually get a better interaction with that person. Because as much as you sit there as the professional, that service user can see what you think of them. Because your body language gives it all away, all away. The tone in your voice gives it all away. If you're scared, it gives it away. If you're full of yourself and, it gives it away. You just give yourself away. Because there's one thing you learn to do as a mental health service user is rea

People with mental health problems want professionals to treat them with respect, especially respect for their dignity. They also encourage professionals to show a more caring and friendly side so that vulnerable people feel cared for: “Speak to them as a human being, you know, as if you are speaking to someone you love, let them understand that they are not alone”.

 

She would like health professionals to understand people with mental health problems better and...

She would like health professionals to understand people with mental health problems better and...

Age at interview: 60
Sex: Female
Age at diagnosis: 40
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If I ask you to say something to mental health service providers, what you would like to say to them?
 
I would like to tell all the psychologists, psychiatrists, or doctors, to really try and understand their patients fully and in greater depth. Please do not just do what you are told. If, every time you ask the same questions, how much can you understand about the patient? I hope that they could not just look at the present situation, but also take into account of their history. But do you know about my history? Am I one of those people who only sits around at home but doesn't want to work? I think they are a bit biased and do not get the full picture. For other professionals, I hope they could work responsibly and be compassionate and welcoming. Maybe you would think as we are talking about professionals and being welcoming is not relevant to their profession. But I tell you it does. Around 10 years ago, there was a time when I didn't want to eat anything, and I was very depressed, but I needed to eat something. I was walking down the street and went into a grocery, I met a Caucasian shopkeeper, he smiled warmly at me and asked me sincerely what I would like to have, in that moment I knew what I wanted to eat because of that gesture, my head felt clearer, and I knew what food to make when I got home. My personal experience has taught me that such a small gesture can actually makes a big difference and can give you happiness and feel make you feel welcome. I realize that is what's lacking in a lot of doctors or health professionals. That's how I feel.

 

Ali feels professionals can sometimes be like a "robot" and could show more kindness and...

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Ali feels professionals can sometimes be like a "robot" and could show more kindness and...

Age at interview: 27
Sex: Male
Age at diagnosis: 26
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And also do you have any messages that you'd like to give to health professionals, you know, GP's, psychologists, psychiatrists those sort of people?

I think mental patients are a lot more vulnerable, because of their condition, and that's why treat them a bit more seriously and with a bit more enthusiasm, rather than just trying to be a professional robot. I think that's, that's something really important. Because the person is already damaged mentally, which you can't see, but you know that he is damaged. He has come to you for help. So try, try to help him as much as you can. And be, you know, sort of show some kindness, and some sort of understanding towards it, so that the other person feels like, 'My doctor cares about me.'

Some thought it was important to find out more about people's individual belief systems and “micro-ethnicity” in order to avoid making assumptions about them or drawing on racial and cultural stereotypes (see 'Getting a diagnosis').

 

Professionals need to be "culturally competent" and aware of people's "micro-ethnicity" so that...

Professionals need to be "culturally competent" and aware of people's "micro-ethnicity" so that...

Age at interview: 49
Sex: Male
Age at diagnosis: 15
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It is a very, very ethnically diverse borough and a huge range of nationalities and religions and degrees of assimilation to British culture. You know, from people who have really just, just arrived and who don't speak the language to, to people who are ethnic in outer appearance but who've been born and bred in this country and who are, have kind of dual heritage but whose European-ness is probably more, more prominent to an impartial observer than, than their foreign-ness but nonetheless within the mental health system it's their foreign-ness which is emphasised because it is their foreign-ness which is considered to, to shape their, their diagnosis and, and . 

I think we've said this before that there is this curious belief that, that, you know, that there are many different kinds of schizophrenia and each ethnicity has its own schizophrenia and that you can't necessarily assume that, that black schizophrenia or Jewish schizophrenia or Dutch schizophrenia is, is going to have the same presentation and the same prognosis and, and, you know, that for, one has to constantly be very culturally competent and make allowances, refine one's, one's approach and I, I'm not persuaded that you can classify people in this way. I think we all have a kind of micro-ethnicity that you acquire a knowledge of through getting to know us but, you know, the form you fill in when you go in hospital is not really giving you that picture and, and if, if you determine somebody's mental identity and pathological mental identity, on that, that basis you're going to fall back on stereotypes. And so in fact very, very old fashioned stereotypes that don't belong in the 21st century.

With this in mind, people also emphasised the importance of looking at and treating the “whole person” and discovering “what makes them tick”. They wanted professionals to realise that people with mental health problems have “the same dreams and desires as everyone else”. This involves two steps: firstly, talking and listening to the person and discovering more about their social and family life, aspirations, physical health, cultural identity, religious identity, their history and attitudes to work; and secondly, providing mental, physical and spiritual treatment.

 

Sara suggests that professionals listen, not make assumptions, and realise that people with...

Sara suggests that professionals listen, not make assumptions, and realise that people with...

Age at interview: 31
Sex: Female
Age at diagnosis: 17
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They need to actually listen to the patient because I think what they tend to do is listen to everybody else involved and the patient is not taken seriously because they're ill and that is sick. So for instance they will listen to the family, they will listen to, you know, anyone like in my case, the manager, or the other residents where I lived, but they didn't listen to me, and I think the person themselves, you know, they, their experience as well, they're the ones who know how they're feeling, you know, and it's not about, whether other people think you are behaving well or not because it's your life, so. And I think it's really, I think it's really important for them to just listen to the patient, which I don't think they always do, you know, and listen to how the patient is feeling. So if a patient is saying this medication is not helping me, it's not making me feel good, then, you know, it needs, but also I think as well that, to understand that they, not everybody's problems are biochemical and that they don't know. 

I mean unless they actually sit down with somebody and go through their entire life experience then they can't just look at someone and think they've got these symptoms, this medication will, will do something to, you know, suppress the symptoms and make them more socially acceptable to other people. You know, I think that's something with me, that they didn't know anything about my life, they just took everybody else's word, 'Oh she behaves like this', like, you know, for instance, my Dad said that I hadn't wanted contact with him, and they therefore said, 'Oh that's abnormal and that's a sign of schizophrenia.' You know, do you want to know why my dad, why I didn't want contact with my family. It's just they don't ask these questions, they just assume. They make a lot of assumptions.

 Yes. I think it's important for people to have a choice over what, you know, what, what kind of treatment they get. I don't know I suppose to see people as individuals and not just diagnoses. And to understand as well, that people with mental health problems, they have like, you know, the same dreams and desires as everyone else. They're not like, oh because you have got an illness you're just happy to sit in a corner watching telly and, shuffling about, you know. I don't know really, that's it.

 

Devon says professionals could treat people with mental health problems as a whole' mentally,...

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Devon says professionals could treat people with mental health problems as a whole' mentally,...

Age at interview: 49
Sex: Male
Age at diagnosis: 22
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The other thing is. There is another thing that I can say. You treat people wholesome, healing is the proper word. There's no cure for some of these illness. Cancer there is no cure. Blood pressure, no cure. Alzheimer's no cure. Mental illness there is no cure. So you're looking for healing. When you have a healing, it keeps you going and supported along the way, until somebody finds a cure. 

So healing of any illness is to treat people mentally, physically and spiritually and the root problem. And then you find the root problem. You can treat people just for one thing only. If you are Alzheimer, you can't treat them for the Alzheimer's alone. You have got to treat them spiritually as well. You have got to treat them physically as well. Because what, when one triggers off it affects the other. And it is all those three things, mentally, as well as the person, mentally, physically and spiritually. And those are the things that make a person. So I think the professionals should, you know, take that on board.

However, there is a balance to be struck between looking at the individual and the whole person. as one man said about his psychiatrists: “They didn't get me as the person. They got my relatives, how I was brought up, but they didn't actually discuss about my inner self, about me.”

3. Work together with patients and families
Many people referred to the importance of professionals working together with services users and their families. They themselves wanted to be involved in decisions and choices about treatments and medication. They also suggested that professionals involve families and carers in meetings so they could provide services that were more “tailored” to the service user's needs. This involved providing families and carers with information in plain, non-technical language about their condition, medication, social security benefits, organisations and support groups, in order to enhance their understanding of the system. One woman thought professionals could “be honest and explain” to service users about their diagnosis and what their outcome might be.

 

Tariq thought it would be helpful if professionals work more with families, and provide...

Tariq thought it would be helpful if professionals work more with families, and provide...

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Yeah well I think one of the good ways of providing a very good tailored service would be for mental health expert, professionals to work with the families, to work with parents, to work with brothers and sisters in that family, to sit down and to talk to them. So for example I'm a patient it would be great if my parents and my family were able to sit down with my doctor, and my psychiatrist and the mental health nurse and the crisis team and talk together and find out the best way forward so that everyone feels involved, everyone feels they can contribute. And also then the family who have no experience of mental health services have a better understanding of the system, they are no, they know that in an emergency where they can take their son or daughter to, rather than them knowing nothing and then when an emergency arises they just sit there and say, 'Oh my God, what do we do now?' I think that's a good way, that's a good sort of technique that could be used. I think that is not used and it could be used more frequently. I think maybe more leaflets, more information in layman's language could be distributed to families, for example when crisis teams come to your home maybe they can leave a few leaflets so family members can have a look through them. And like on those you can have a catalogue of numbers and places where patients can go in an emergency, during out-patients or maybe for a respite break or maybe organisations they can contact for a, a social network around them where they can meet with other patients who have experienced similar mental health difficulties to themselves. 

There are various other things that they could do but I think that they're not utilising these ways, they're, what they're doing is a lot of them don't have the time to do that and that's understandable because they're all busy, everyone is a busy person but I think that more could be done and it could be achieved but I think that can only be done, not by the professionals on their own I think it needs to be done through a filtered system where the trust board of Mental Health Trusts in different parts of the country can make these decisions, can look at ways forward, explore ways forward and then let these views filter down to the professionals. And then maybe work together with the professionals and, and see what ways they can actually get to families out there who have patients, or even, you know, about patients that ring hospitals to say they're very unwell, you know, what systems are there to get to them? You know, find out ways because there are hundreds of ways but people within the mental health system I feel that they're failing in that particular area but they can improve. I'm not saying because the thing is that they can improve but I'm not going to say they're racist because of it, I don't believe they are racist because they're not providing me with the tailored service that I wanted but I think that they improve, there's always room for improvement everywhere, in every walk of, in every walk of life, whatever profession there's always room for improvement but that takes time and that takes the participation of staff, patients, families, the senior people in that trust, working together to work for a more better , to work for, for a more better community and for, to help the patient involved recover and be able to integrate themselves back into the community in which they live.
 

Not everyone agreed that families and carers should be involved. One woman thought that services “listen to everybody else involved and the patient is not taken seriously because they're ill”. [See Sara above].

Last reviewed September 2018.

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