SJ Understanding Anti-Racism in Co-Production Spaces: Centring the Voices of Racialised Individuals

Yeah. So you should get a thing on your phone saying that the recording's OK. Say this meeting is being recorded, OK. Sure

So first of all, can I get you to introduce yourself? Uh hello, my name is uh Su Jay and uh Um, I'm from a Bay background of African descent, but uh. Black British uh ethnicity. Um, I've worked in the NHS for about 35 years

Uh, until the time when I became unwell and had to access the mental health services. And uh I had worked in mental health services before, so I knew kind of the issues that people had and especially being people. And what it was that they Needed Support in order to lead meaningful lives

Um, and I did my best to make sure that everybody um had a better um. Better quality of life from mental health services. And uh it was a team that was um very forward thinking, very innovative

Uh, in the butter, not where I lived when I accessed my, um, when I accessed mental health services. So my first. For into Mental health service, uh, as a, as a, as a user was due to um Racism and I had moved into a certain area that had a majority of one

One ethnicity. And they basically came up and asked me to But they didn't turn that off. They basically came and told me to sell my property because there's nobody in that area who look like me

And when I refused to sell my property to them, they Went on a campaign of uh harassment on a daily basis. In fact, that is what made me become very depressed. And ultimately led me to um having a breakdown and being admitted into hospital

So that's basically the background. Yeah, so thank you for sharing. So I know that you've done a lot of co-production

What's your experience? So you got involved in co-production because you uh have that professional experience, but also you have that lived experience. What's your experience of co-production? Well, what made me uh decide to, when I, when I joined the team of volunteers in that trust for service users initially, uh, it was There were 28 white British and I was the only black person in the group. And uh My first uh meeting, uh

White service user got up and said, oh, we've got a token black. And went on to talk about several years ago, they had had one black uh person, African Caribbean descent, and uh they said, oh, they couldn't cope with the volunteering and uh he ended up committing suicide. Um, we had been discussing education, employment, and training on the agenda in the meeting, and I was quite taken aback because he was allowed to

Um, starting quite a few derogatory things and nobody kind of said that is not what we're here to discuss. Um, so after the meeting, I did, uh, request to speak to senior management and ask, you know, how were meetings conducted and why wasn't, um, Someone able to say, look, let's stick to the agenda. And um I requested someone from the equality and diversity um team to attend the meeting

They agreed, and even on the day I sent them text messages and all that. And they didn't come to the meeting and uh I think the senior management team knew that no one was coming because they seemed to be enjoying my frantic calls and sending emails and not having a response. Anyway, to cut a long story short about uh trying to make changes so that people who looked like me and who also wanted to be involved in co-production, that they had uh more of a voice at senior level, a senior management level

Um, I decided To raise a complaint because I didn't believe I was listened to in that meeting with senior management. So, um, I did the complaint. Equality and diversity manager didn't come

I was very tearful in the meeting because, well, before the meeting started, because I felt very disappointed. Uh, it was a betrayal by the staff. They didn't come to support me and all I just had asked was, can you just be in there and sit in the room with me so I know that there's somebody who is there

I'm not expecting you to say anything. I know what I need to say. And uh the person didn't come

So I did start saying, you know, we need to have a diversified team of service users and we need to do co-production so that uh more voices are listened to and heard and that the services do change in a positive manner that uh listens to us. Um, so, yes, we ended up, uh, um, you know, having the um The more people. I was very instrumental in getting more, uh, you know, different ethnicities to come into the group

And one of the first things we needed to look into was people's safety. Um, would they be safe to speak out as in co-production? This is what we'd like to do. Say, for example, uh, communications

Uh We wanted the the leaflets. And any documents that uh people needed to read uh to be in a, you know, in simple English that anybody can understand and also that they were. Uh, translations in the different major languages in the barra so that people became more engaged and were more able to talk about how these services uh should be uh should be um delivered and what would actually help particular people, because the more voices you hear, the more people are able to talk about the issues and try and get support around that

The better it is not only for the individual, but it's good for the trust as well, because they get to hear from the horse's mouth, so to speak, and also they can look into, uh, like I said, like communication. The other thing was looking into patients' rights. And when I was on the ward, uh, you know, you'd Find that the, they just say, oh, there's a ward round, and you know, you've just started eating your lunch, and the doctors and the nurse would whisk you off

By the time you come back, lunch has been taken away and you've got to wait until dinner, and probably you wouldn't have had breakfast because you'd rather, you know, early, early morning person. So it's like you'd go the whole day without eating anything. And we said, look, we're taking medication

And we need to have access to food and uh and water to drink or some juice or tea, but they didn't even put things like that out. So it was at that basic level of basic needs that we needed to look at. And it progressed to the point where now we were looking at service delivery and design

What is a compassionate service? What is an inclusive service? How do we engage with uh our audiences and other stakeholders? And when we get that information, how does it translate into um Into action plans. Uh, how do we monitor these action plans? How do we implement them? Are we reviewing them so that they are current and uh workable? Um Could we put dates where we can go back and look at it and say, look, maybe this isn't working, let's do something else differently. Um, and one of the things that I was really passionate about getting involved in was the actual, uh, patient environment on the ward

Uh, for one, there were mixed sex wards which were horrific. Uh, to say the least, because there was quite a lot of quarrelling and arguing. Women didn't feel safe

We didn't have, uh, you know, somewhere where we could go and chill out if we didn't want to sit in the lounge with everybody else. Uh, they would lock your bedroom door in the morning and you weren't able to access your bedroom door. And so we were saying, but, you know, when we're at home and we're not feeling well, because it's not only mental health problems people have

They've also got physical health problems and uh for example, I have um I have uh fibromyalgia. Which is chronic pain. And sometimes, you know, I've got to change the positions and sometimes I need to lie down because I've got what's called Mannier's disease syndrome, which is um an imbalance in my um in my ears, and I can be sitting and I feel like I'm rocking, or I can feel like I'm going round and round

And the only thing that helps is if I lie down, things kind of come together. But I wasn't even allowed to go into my bedroom to lie down, even if I was in pain. And I thought, you know, this isn't a therapeutic environment for me

And they do things like, uh, OK, we're going to have a um a meeting uh ward ward, um, what do they call them? ward meetings. Community. Yeah, yeah, community meeting, thank you

And they, there wasn't an agenda, uh. Nobody in particular chaired it and it was very chaotic and quite threatening because people found that as an opportunity to bring out their complaints and the shouting and the language. And again, that didn't help because it was like every week you're going all through the same things and nothing was changing

So I asked if um that could be properly chaired and minuteed so we can see from week to week if there's any progress. But I didn't stay on the ward that long because I just didn't feel safe. Um, I had to ask

Uh, my doctor, if I could, uh, go home and get a home treatment because the other thing was, like I mentioned just now, not only does one have mental health problems, but you can have physical health problems also. And the bath, uh, the bathroom on the ward had a um a bath in the centre of the room. You didn't have any grab rails

I had carers coming to support me at home. They didn't have provision for my carers. I couldn't ask my carers to come in to support me around having my um daily showers and staff were too far stretched to assist me

And it meant that I wasn't able to have the daily showers that are very important for not only my mental health, but for my physical health. And that was the main reason why I left. 1, not being able to lie down, 2, not having access to food and drink, and 3, not being able to have that

So, We came together as a group of uh uh service users uh from the Bain Group and said, look, this is part of what we would like when we are on the ward and uh We had several meetings and we actually came up with a um patient pathway. And within that pathway, because I saw some people would be on the wards for 6 months, 1 year, people became de-skilled and became institutionalised. So it was a way of saying, look, can we empower each other as patients, service users to the point where we can actually sit down with staff and say, look, let's look at the recovery and well-being plan

So that uh we're not in hospital for so long and can actually be um meaningful, have meaningful, meaningful roles in society. Because when I joined the volunteers, uh sorry to take you back, but I'll just explain what volunteers did there. Uh, you were doing photocopying

stapling papers, stuffing things into envelopes. And sometimes, you know, putting things in boxes and packing the boxes away, very. I felt very demeaning stuff because quite a lot, they didn't

Look at us as people who are educated. People who worked and people who had ambitions, people who had uh things that supported their well-being, and I didn't see my well-being being supported by uh stapling things, so I said, no, can we do something that is meaningful and improves the lives, especially ofA people and get them on board and uh be involved in things like uh I'll give an example, we Did an exercise where we were given an anonymized um. Uh, like, like a patient record, but you didn't know anything about the patient, not the ethnicity, not their age, um, nothing at all

And it was just questions about education, employment and training, and what were the barriers that people faced. So we sat down and uh you know, devised questions with staff and said, look, this is what I would like to be asked if somebody was carrying out this exercise. And we put in, you know, what is it that makes people unable to either work or keep a job or get into education and training? What were the barriers and sit with the, the staff in the OT department and um you know, Uh, the wellness and recovery staff, uh, at psychology, psycho psychologists and say, look, this is what my experience has been

Uh, how do I access, for example, uh, training, be it to go into college or some short course or to go into university and have that as part of a care pathway, but in co-production with the trust. And the stuff. Can I ask you, Sue Jay, can I ask you a question? How long have you done co-production and how, how much of your experience has had racism in it? Oh, that's a very good question

I've done co-production now for Mhm. It's almost 1617 years. Right

Uh, the racism has been horrific. I was called a black this, that and the other. In meetings, I was threatened with actual bodily harm

Um, The service user. The female who was after the initial one who called me a token black. My 1st 5 meetings would get up when I, because we had to stand up and introduce ourselves

She'd get up and she'd call me all the ugly names under the sun. It was horrific. I had never experienced in my face racism

When I worked in the NHS, I knew, yes, there's quite a lot of racism and bullying and all that, but it was quite covert. But when you came in to Mental health services. Bain service users were very disempowered

Uh, to the point that each day we were going to do a place assessment, which is the patient, uh patient-led environmental assessment that's going on to the wards because one of the things we said is, if people are disabled, why is the bath in the middle of the room? We need grab rails. We need this put into place. So it's by, that was the one of the biggest co-production things we did

And also going into the wards and Education, educating patients about their rights. But what we found was that the team of staff when you were going over to the wards, um, you know, people walk, your group of say 56 of you and your people walk, and I used to have the staff telling me, walk behind me. And I'm like, no, I can walk on your side

No, you are not listening to what I'm saying. And I say, I am listening. You're not

Using that tone of voice on anybody else. You're not asking anybody to walk behind you. And I was quite, um, well, you know, quite stood my ground and I said, I'm not, uh, you, you're not mother duck and I'm not baby duck that I need to walk in the steps that you're walking in

I said, and I find it very uh patronising. And he went and reported that um uh he reported that I'm um I lack discipline and some, some other thing like that, but, and the team of staff, there was no person of uh any uh BA ethnicity, which was one thing we said, look, this team that is, that we're working with to do co-production, they don't understand us. They don't want to understand us

They don't want us to be included as equals. And they did get a few stuff, but it was just like to cover maternity or if somebody was off sick for quite a while. It took, I think, about A good More than 10 years

For them to get a substantive uh BAM stuff in the, in the uh in the patient experience uh partnership um team. The other thing they had was uh. Apart from the staff

Um, it was the opportunities. We weren't given opportunities where we could improve the services. Like I said, going to um do the patient led uh assessments on the wards where we'd look for things like are the ligatures, look at cleanliness, and I'll give you an example of uh The one visit we did, and there was actually raw sewage

In the courtyard where patients walk back and forth, and the courtyard had like um seats and in the summer people sat outside. And you could see from the flow of that raw sewage that it had been there for quite a while because uh you would see like the marks around it that that's where it flowed and it's dried and and I said to them, look, this is not right. That's a health hazard

Has nobody reported that? And why isn't anything being done about it? Because I'd spoken to a few patients who were inpatients, and they said, oh, that's been like that for quite a while. So it was looking at staff being accountable for patients um health and safety and also empowering patients to be able to say, Uh, this isn't right. Can this be done? But people were beaten back so much that even if they saw things that they wouldn't tolerate in their homes, they wouldn't do that

So, and the co-production went to the extent of looking at We have Um, people looking after us, and quite a few of them had very bad attitudes towards people who have mental health problems, and they use stigmatising language. They would say, oh, you know, this disease you've got. And I asked, what disease is it that I've got? Because I didn't think mental health was a disease

It's not contagious. And uh the statistics then were 1 in 4. So if there are so many people who have mental health problems which the staff knew, why were they stigmatising us when we are either inpatients or when we are going to do uh co-productive work with them? And what I found was if they use it as a tool, as a tool of power

Mm. Yes. Did did your white peers get more opportunity than you? Cause I just wanted, definitely, definitely

Uh, and they were given the better things to do. And the funny thing was they didn't know. They didn't know uh what was needed or how they could advocate for patients at large, because they were listened to

Whatever they said uh was done for them, so they didn't have any need to complain or they didn't have lack of anything, like, say, for example, talking therapies. Uh, it's a well-known fact that BAME people don't have access to talking therapies. And we were looking at what are the barriers

And when we do get talking therapies, What is it that helps us? And I'll give for example what they, you know, offered all the time was the CBT and CBT works in certain um In certain instances or cases, but as a BAM person, I didn't find that CBT helped me. And when I said no, this is not meeting my needs for psychological intervention, can we look at You know, uh, incorporating other uh ways of, um, designing, uh, you know, the delivery. And I'm very fortunate because I think that's where I met you, Isaac, when um

I took the initiative to come out to your barra to find out what was happening and also to speak to people who look like me and who were experiencing what I was experiencing, to have people who could mentor me like you did, and also to empower me and people whom I could speak. About anything and feel these people listen and they are actually going to help me make a difference. So that's when we um I think it was you who mentioned the tree of life as a narrative

And I found that when I used that in my talking therapies and suggested it that it actually met my needs because we're talking from a point of being empowered. Whereas talking about issues when you're already feeling down and depressed and You know, you're at your worst, it only makes you worse and then they had this thing of, oh, we don't want to open a can of worms. It's not a can of worms

It depends on When you open the can, how you open the can, and where you put the worms. And at the end of the day, they say to you, oh, don't talk about those things because they distress you. Sometimes you need to talk about these things, but you need to do it in a safe way, and you need to do it in a way that meets your specific needs

And what happens with people, especially from ethnic minorities, African, Caribbean people, is we have our roots. And it's our roots that hold us in place when things, when things go bad. Um

Several years ago they had a government initiative, uh Better Britain, and they've got quite a lot of initiatives they've come up with. It is recognised that there is a racism. In society

But how is That tackle and how do we work together with everyone to make sure that our voices are heard and that we are treated better. And um I was able to Be involved in that and when we were doing the questionnaires, I was saying on education, employment and training, was also looking at uh if people presented themselves at either hospital or, you know, A&E or if the police were involved in there being sectioned to get the service, which is another problem that uh that um we tackled when we had a few BA people in the service user group. Uh, to do co-production around why do we not get a service when we present the GP? Or speak to any other health professional

Why do we have to get into services in a violent matter, in a violent way, especially with African Caribbean men by being sectioned and uh there are lots of horrific things that go on. People have even lost their lives through that. So that's why I take what I do very seriously and try to get on as many people from the Ba background into co-production

How's Sujay, how safe is it to. Bring up challenges around racism and and how do we get, you know, like you're bringing more people into co-production, is it safe? I, how do we do, yeah. To be honest

Um, I had to hold people by the hand. Some of them were able to stay the course, but a number of them who had been in professions like they were teachers or worked in finance and had good jobs in the city and very educated people with degrees and the postgrad and all that. And they'd come and listen to all that and they'll say, Sue

I had all these problems when I was working. I'm not well now, and this group of people. Uh exhibiting the same things and nobody is prepared to make a change

I'm sorry, I can't do this, and lots of people left. But I'm, I think I'm a resilient person. I've been told I'm resilient, although sometimes I don't really feel it, because I do get knocked down a lot

But the thing with me is I'm not gonna stay down. If I need to, um, you know, take a break or just give myself a bit of space to figure out things, to research things, to find out how, uh, the issues can be approached. Because they've got the narrative angry black woman

If black, uh, and mixed race or other ethnic ethnicity men talk, they are seen as the big black and dangerous. This is the narrative um in society and especially in mental health. And it's very difficult to talk about racism in those terms because the way policies Uh, um, executed

It is in a very racist way, which is against us, where they would Where they could treat us with compassion and understanding, they don't. They feel they have to be brutal. They have to exert power over us

They don't believe that we are rational human beings that can be spoken to and that we understand things and that. All that is racism. If they don't, we are the other

We don't look like them, we don't. Talk like them, so we are to be despised and put down and uh not have a voice. And I find that I'm somebody who I know I've got things to say

I think they're reasonable things which they eventually do turn out to be, and I don't want to be silenced, and I will work with people like yourself and one or two others just to make sure. It doesn't take 10 people to change something. Sometimes you only need to get one person with the right intentions and having Uh, the support of a few other like-minded people to bring about change

And I'm really happy because you've done, you do loads to change things and uh For myself, I've also, you know, continued and the racism also goes in as far as um Um, When I complained, they said, I said I wanted an independent. The person to come in and listen to my complaints about the racism that I was enduring. And what actually made me get to that point was one of the uh service users in the group, um, the lady I was, the woman I was talking about who um tried to attack me on 5 different occasions in meetings

Uh, I used to walk down to the hospital and on this particular day, I left very early so I could sit far away from the door. So if this woman came, a note, so I could sit near the door, so if this woman became aggressive, I could slip out the door quickly. But what happened is I got in and I sat near the door where staff were

And just as the meeting was about to start, this woman burst in. She literally threw the doors open, and she was effing and blinding and asking where I was, because she said she was driving down the road. She knew I walked down that road, and she saw someone from the back whom she thought was me, and she drove her vehicle off the road onto the pavement because she wanted to run me down

But what she did is she hit into an electric pillar. And damaged the car and the woman turned around and it wasn't me. It was somebody else

And she was so angry. She left her car there. She didn't even wait to call the police or do anything, and she ran into the meeting and she was angry, and she just shouted, I've just hit my car into an electric pole because I thought it was you, I wanted to run you over

And it was that point that I thought, my goodness, this person actually hates me. That visceral haze. Racism is the most terrible pernicious thing that any A person can do to another person

Mm. A lot of times. Yeah, to the point where somebody would even want to kill you just because you're a different race and because you're coming into the same meeting

So I did raise this very strongly and I said this, uh, you know, this needed to be looked into. And one of the senior staff said, oh, I've got a friend who does consultancy and uh uh you know, we can get her to come into this meeting to discuss these issues. So I said, can I ask you one question? This friend of yours, have they ever taken complaints or worked in somewhere where they listened to uh issues that black people faced? And she said no

So I said, so that's not the right person. I would like a person of any ethnicity as long as the ethnic minority doesn't have to be female, it can be male, and I will sit down and talk to that person and they understand what the issues are that I'm bringing up. And they did get someone from a different ethnicity and male, and the person came up with an action plan of how the trust needed

To um To, to, to treat BAM people and uh there was an action plan drawn up that by this time we needed to have recruited so many BAME people. By this time they needed to have been equality and diversity training, not only of the staff. Uh, up to senior board level, but also of people who used uh the services and in particular, uh, the service users, uh, who are doing co-production with them because there was this um Uh Power dynamic

And the disempowerment of people from ethnic minorities. So they got in, uh, the man, nothing was done. Later on, when, when there was a group of BAME people, we said we would like uh you know, consultancy because the issues still carried on

Quite a few dropped out, got in people, and we said, let's get in an independent uh BAM um consultancy people. Uh, we had two different, uh, consultants over within the 1st 10 years, I'd say. And nothing much changed

The first one came and after that, things even got worse. Uh, coming to about the 7th, 8th year I was doing that, they got in another consultancy and the first thing that they said when we had this meeting, because it was um quite a big, big meeting, they had recruited quite a lot more uh service users or I hate that word, service users, people who use services, and that's one thing I said is, That it's a very disempowering to call our service users. It denotes that we just want to get something for nothing

No, we've worked, we've paid our taxes, and the NHS, NHS is there for everyone on an equal basis. So I said, we need to change the language we use as well. So, and I always call myself a survivor of mental health services

I wouldn't even call myself as a person who uses, because I've survived the system. And what they did is the senior staff did uh uh told the consultancy to, you know, they were given like a code of conduct for the meeting and we were told that um we shouldn't talk about racism or use the word racism or racist. And I thought, hmm, this is what we're doing here

We're trying to get an understanding. And if we can't say why we're not understanding each other based on racism, then what is this meeting about? So, you know, we had a nice day, carried on and I was picking up themes of what people were saying. When it came to the point where I wanted to contribute to the meeting, the first thing I said is we've listened to a lot of racist comments

And we see how we are being excluded. And we are being excluded because of our race. Um, yeah, and quite a few of the BAME people said, yes, you know, that's what we're trying to say, but they're not giving us the opportunity

Because the other thing they did was when you were trying to give feedback or, you know, give your point of view, they'd say, no, no, no, let's listen to that person shutting you down. And that was very, it, it's racist because they don't want to hear what we have to say. So when the senior manager, the same one who had wanted me to talk to a friend, when she was summing up, she said, oh, we've got a very toxic service user here

And she was referring to me that I'm toxic. And I found, I found that an affront for a staff member to call somebody who's talking about co-production. How can we do things together and you call me a toxic person

Um, needless to say, with that attitude of hers, it didn't take much longer after that. Uh, her PA uh had a birthday and, you know, as the team did, people brought in cakes and eats and whatever. And this uh pair of us went and got um cake from a well-known uh supermarket chain where people used to go and buy, you know, things to celebrate and bring to the office

And This woman was so. Entrenched in her racist attitudes and behaviours. That she didn't even think twice to send an email to the whole um team and say, oh, she's brought this effing curry cake and words to that effect, and other derogatory remarks

Uh, nobody eats what she's brought, let her take it and go eat it with her people. She had forgotten that her PA was um uh blind copied into all um incoming and outgoing mail. The PA picked that up, printed it off, went and asked her, when does this, does the supermarket sell curry cakes? And she got a shock

She didn't know. She realised what she had done and she was like, oh, no, no, I was only joking. And that's the other thing they say, Oh, you don't know how to take a joke

It's not a joke, it's racist. And people try to hide behind. Oh, you know, it was only a joke

You don't know how to take a joke. No, if it's a joke, I will laugh with you. If I'm not laughing, it's not a joke

It's a joke at my expense, and I don't want to hear things like that. And people don't like to be told that, oh, you know, you're you're very sensitive. If somebody said something like that to you, would you not be sensitive? They lack sensitivity

They even lack. Um, Just the common sense. And my father used to say, people call it common sense, it's not common

It's very expensive things and they lack that. Can I, like, yeah, so anyway, what happened with, let me just I'm just coming to the end of that. That member of staff took that uh email

And went to HR and said, look, I know I'm always typing letters on behalf of a particular person who uses services, and that was me, because she used to arrange all the meetings and get all these um consultants to come in and all that for, you know, trying to get us to be a cohesive co-production team. And she said, I've always seen, because she used to see my emails and what uh issues I was raising. She says, and I've seen consistently that There is this hardening of attitude and not wanting to change

And she says, and this is where it all comes from. Do you know She was told to resign immediately, or she'd get fired. She packed up her bags and she left on that day

And it did kind of. I would say that was like the turning point of the trust. Taking people a bit more seriously

Equality and diversity, they only had one member of staff. And I remember when I came over to your trust, there was actually a department and a team. And my butter had Uh, by then, 50% of the um Population was from Bain

And for a long time, I was the only person in co-production as a ban person. And I'm not all ethnicities. I can't talk for all experiences

I can't talk for all things uh uh that people, you know, expect of the NHS services that we access. So, um, It was from coming to see how your trust did it and taking it back. To my trust that things started to change

And the other thing is um with co-production. I looked at People being in hospital for long periods of time. And I know for myself as, as you know, um, I do have the spiritual side of me, and when things are difficult, I do

Kind of go go to that as a way of reconnecting and as a way of building resilience, as a way of making sense of what's happening in life. And I had sat on the strategic. Patient group where we did co-production with the directors, uh, you know, being a strategic group, we were looking into key areas and seeing how we could improve services

Number of times I had to take that NHS Constitution and say to them, nothing about us without us. This is what the Constitution says. And that is what I used as a Bible with them, that you cannot change these things

You need to do impact statements to look at the uh population. Before you change a service, you look at how many people use that service. So, and actually using the um Equality Act 2010

Using those characteristics. To see how people were affected and Which people used that service, which people were, uh, which groups of people were being excluded. And you find that quite a lot of people were being excluded because of their race or because the service didn't cater to their needs

And I found that spirituality was a big area that we were not tapping into and I mentioned it at uh one strategic meeting. And I had been sitting next to this certain person for a number of years, and I said, do we have pastoral care or um somebody that people could talk to about spiritual matters? And the chairman turned around and said, yes, that's the person sitting next to you. And I said, really, um, are you in pastor? Yes, yes, yes

And they told me, you know, where they were. I said, but how come you've never mentioned anything? Do you see patients? Do you? Have anyA patients? And the person said, you know what, I can't be bothered. I'm retiring anyway

And I said, hallelujah to them. And I sat down with the uh senior managers at the strategic level again and said, look, we need to have a pastoral care department. And staff need uh uh and staff need to be able to feel confident enough to refer people to that um service because it's something that certainly I would have benefited from when I was in hospital, or even when I'm not in hospital

And because when people, when you are at your lowest point. It's like there's nothing else to go to. There's something in us as human beings

It's either you're gonna light a candle because you're feeling depressed, you've lost loved ones, and that's your way of connecting. If it's lighting a candle, or if it's taking a walk into nature, you know, it's the simple things that don't cost anything because whenever I talk, they think, oh, how much money is that gonna cost? Some things don't cost money. So when we were, when they were looking for somebody for that department, they said to me, could I sit with them and uh the other thing I was involved in was the recruitment of staff because we said we are being looked after by people who don't know how, how to look after us

So we designed questions, interview questions of how um you know, the qualities we are looking for like, Uh, professionally, are they, uh, qualified in, be it an OT or a nurse or somebody who does um Psychotherapy or anything like that. The person needed to have that minimum standard of education. They needed to have the personal qualities

They needed to be people who could work with different groups of people and different ages on the protected characteristics. And we had, we helped design questions that looked at that overall. Mhm

And that's how, yeah, that's how we were able to sit on staff interview panels to get the staff in that reflected the diversity of the uh population as well. Mhm. Can I ask you a question like? Yes

Ha So does this, how do we have the conversations about racism when we're shut down and how, how serious do you think are are people are making co-production anti-racist? Mm. The first thing I'd say is. Extremely difficult because people have entrenched

Racist attitudes and behaviours. And they have an awareness now that it's Illegal or against the law to discriminate people. Whereas long time it was out and out, you saw the bullying and all that, and you could, you, you know, people would call it out, but now they do it in a very subtle way

In the way they applied their policies. So You can see it, but how do you prove it? That is the big problem. is how do you prove that there is racism in this particular service? For example, access to talking therapies

One, you can see what is the uh the composition of the staff in that team. Are the only Middle class Uh, white females from the age of, say, 22 to 35, which is the main group. Can that group of people Deliver therapy or understand me when I talk about my difficulties

As a Black British person of of African origin. who's lived here Many, many years, who faced all these challenges of racism when I've worked and in society, be it to do with, you know, where I bought my property, where there was that problem. I had to actually Just leave the house

I thought my mental health is more important than brick and mortar. I had a mortgage. I had a breakdown because of what was going on

So I lost my house. I got very depressed with that and trying to access even things like, uh, you know, where do I live and that. There's a lot of racism even in the allocation of things like housing

There's lots of racism even in how people are treated when, you know, when you have to apply for things like benefits and stuff. would not help you, even if you had social workers, they wouldn't help and support you to get what was legally and rightfully something you could and should get. So it's looking at how do we tackle Racism

We tackle it by having people. In places where they can make a difference. And people who are empowered, the staff need to be empowered as well

And for my part, I said to the staff in the trust, you need to have a BAM staff group. And because of my going to all these different places, I found out that there was a same group of NHS staff. Uh, whom I said, you know, whom I, uh, linked to quite a lot of people in the trust

And I heard from several Members of staff who had wanted to join because obviously people are talking that, oh, do you know soJ said there's this group of NHS staff and there's all these, uh, we, we, you know, have a lot in common in terms of being disempowered, being bullied, not being promoted, being gas lit, um. Being treated unfairly, sometimes even racist language used against us, and the manager wouldn't even take a complaint if you raised the issue. So they said, yes, it looks nice because it's out of the trust and we are able to talk to people

And um then senior management turned around and said, no, we can have our own uh group uh within the trust. Because they wanted to see and hear who was saying what, and people were being penalised for speaking out. So that's why I went back to say we need a group of empowered people

People who are not afraid to talk, people who can be mentored. By people like yourself. Who are empowered And I've given talks uh within the trust where we were talking about uh compassionate care

What does compassionate care look like? And compassion and I, the first thing I said is, how can staff deliver compassionate care when the trust, NHS trust itself does not treat itself compassionately. So, you are asking staff to do something that you don't give them. It doesn't work like that

Look at when people are in a job and I, you know, I said, I'm not here to lecture the staff about what compassionate care looks like. I said, I'll ask questions rhetorically, I don't expect any answers. But it's a way of stimulating your thoughts

Processes of how you can do things differently. And highlighting where there are issues that people experience and hopefully make a change within the way staff are being treated, and that will translate into better, compassionate. Care towards the people who use the various services

At the end of that, quite a lot of stuff because when I made a point like say in um promotion. I said when I worked, I was passed over for promotion many, many times. I'd get a nurse come in

I would train them and, you know, on the job, mentor them. When a slightly senior position comes up, I would apply for it and I wouldn't be given the job. The person I've trained who's just been with the trust for maybe 1 or 2 years, is promoted above me, and yet I trained that person

I said, and it happened so many times, it does make people feel depressed. So you've got stuff, OK, not everybody can be promoted to that because there are lots of other things that you take into account. But where people deserve the job

How do they get that promotion and it was a team. Does that is that your experience as also in co-production? Yes, yes, because I'll give you a very good example. Uh, the panel interviewing the staff

We all were always white staff because they were the senior staff. So, if this is a group of people who And I did challenge it later, we would say, oh, they say fans. Oh, we know them

Oh, you know, we go for dinner and things like that. And I had to say, is that why and how you give people jobs. And the best example was when I sat and interviewed uh someone for a fairly senior post

Um, the one main person was from out, out of the trust, and we had the one white staff who was within the trust. And uh The I always like to ask, what is the pass mark? What do people need to deliver? Uh, what criteria do we use to do these scores? And they said the person needs to pass the face to face interview. Which, like I mentioned earlier, were questions that we sat down and said, looking at the qualities and the values of the trust and service users and came up with questions

It was anything from 5 to 8 questions. And it was time-limited interviews, 45 minutes. So we kept like the same criteria for everyone so that it was a fair interview

And made sure that I always took notes. And I'd get feedback when we had meetings that they were putting service users or people who use services who were not writing down anything. So when it came to scoring, the staff would say, Oh, this person, they spoke very well

We're gonna give them top marks for this thing. And the Panel member from the service, um, from the group of uh patient experience partnership people. would be overpowered one, because you're only 1 and you've got maybe 2 or 3 staff

Members So your voice sometimes is not even listened to. Worse still, if it's somebody who doesn't write, and I had to say, look, Not everybody can do everything because they said, oh, if we're doing, we're opening it up for everyone. I said yes, look at it as stuff

You're not making everybody a band 8 manager. You're not making everybody an associate director. People come in with their competencies

I'm not saying that you need to grade us as people who use services, but if people can be trained like on recruitment uh and uh on recruitment, things like knowing employment law, things like, uh, you know, looking at The 10 characteristics, uh, protected characteristics, looking at things like the staff composition, what is needed in the team. If it's a team, say, on an acute ward. Where it's Uh, men only

And we know that acute mental health wards, uh, if not 80% of bay men, African Caribbean men or men of other minor ethnicities, and then you've just got females. It doesn't work like that. You need to have a balance on the ward

Neither do you want on a ward with females to just have females only. And I'll give you a good example when we went back on the ward, it was a female award and they had a male member of staff from an ethnic minority. And we had gone to do some uh work around empowering uh service users around being able to ask for care plans, because that was the other thing

When I was on the ward, uh, because I had worked in the NHS, I knew I needed a care plan. I left early, like I mentioned, uh, and I asked them, I phoned the ward and I said, oh, can I have my care plan? And they said, no, you can't. I said why? They said, oh, because we wrote it

I said, but if it's supposed to be my care plan, a care plan is what needs to be done for me in order to Help my recovery. So how do you know what it is that I need? And they said, oh anyway, it's on Rio, and I played dumb. I said, on Rio, where Rio? And they said on the computer system, I said, Oh, can I access it so I can see, you know, what it is? I said, because nobody sat down with me to see what I wanted to do in my care plan

Nobody knew what the issues were that I was facing and what support I needed. So, how can that be somewhere that's not accessible to me and belong to me? So that was kind of the empowerment that we were doing. And when we're looking at co-production, these are the types of things we are looking at

Are we getting people who have certain competencies. To be able to Be credible, talk and say, look, this is what we want. Um, and get through because sometimes Uh, because people are so entrenched in the way of thinking

They've got blinkers and it's to kind of Put a flashlight on them and also to expand their vision. Get them away from the tunnel vision, get them away from a very famous, uh, NHS thing. That's how we've always done that

You've always, Ian. The definition of madness is doing the same thing over and over again and expecting change. And for a long time, that's how the NHS has been

And that's why it is not responsive. Which is one of the, one of the CQC values now they talk about the service being responsive and at the right time. And Proportionate to the person's need

So there has been a very good focus of shifting and making people think. Uh, more broadly. But what I found even within the recruitment thing, and I'll tell you of this one particular, uh, interview I sat on, they said the person needs to pass the face to face and uh that was bottom line

If you don't pass face to face, you don't get the job. And I said, fine, I'm happy with that. So the, we had these two candidates

One was black, one was white. And uh we enter same questions, same time allocated. When it came to scoring, the white candidates failed the face to face

The black candidate passed the face to face. When it came to the other um exercise that they had to do like a presentation. Um, the white person did a good presentation

The black person Did a good presentation. They both passed the presentation, but the white person failed the face to face. The white person had one score more than the black candidate

And they said, Well, we're giving the job to this person, and I said no. They failed the face to face. Oh, but look, they've got one score more

I said, let's look at the scores again. We did the scores, first, the first two times we looked at uh. The questions and what the person said

And re-scored them that way. And we were still coming to very close margins. So I said, look, let's put them side by side

The candidates what they said and look at the scoresheet. And when we did it that way, the black candidate had actually been Scored less points on a number of questions. And that's where this so-called unconscious bias comes in

It is not unconscious bias, it is conscious manipulation. Mm. Of the numbers

To get somebody to get the job. It is not fair. And I said no

This isn't fair. So they said, OK, Mind you, I was the only uh expert. A a patient, uh, expert patient on that panel

We had people from the Royal College of Psychiatrists. We had people from NHS England. And we had senior management and uh and the governor in that meeting

So the power balance again was shifted in favour of That certain Ethnicity who had the power within. Well, the Grades of the NHS and here I was as somebody who is using a service. And of the Of a Ba ethnicity

And having to challenge people at that level. We all, all of those people white people? Yes, they were all white people. I was the only black person, but I was able to challenge them because I knew what I was doing and I I'm like a dog with a bone

I don't, I don't give up. And I have this very strong sense of what is fair. And it it gives you what I will call a righteous anger

Because There's one thing with seeing something that's unfair and unjust. And shouting and screaming about it. They just shut down and the angry black woman

Big black dangerous man. Don't listen to them. But you've got to temper how you speak

Your tone of voice, reflection. Even right down to how you use your hands as gestures, which I learned from that um interview we did. Because we ended up the black person actually had more points than the white candidate at that point when we did this side by side

And the staff turned around and said, well, we are the ones who are gonna work with that person and we can work with this white person because we know them for so many years, we've gone on holidays together and, you know, they felt so free to say all those things. And I thought, my goodness, so you are only giving people these senior jobs. No wonder the NHS is not uh being innovative, is not delivering a service that meets people's needs and is irrelevant in a lot of ways

It's because you're having more of the same. There aren't diverse voices, they aren't diverse thoughts. There's no innovation and people are not allowed to contribute as individuals in an individual way which they come in with

I'm not saying that because I'm a black woman of African descent that I only want people like that to look after me. No. But when you've got a team that comprises of different ethnicities, people

Learn from each other. It's like osmosis. When they're talking, when they're in team meetings and they say, oh, or even in supervision, I had this case and it was difficult

And if you've got that mix of different ethnicities, that's how people exchange ideas and improve individual practise and the practise of each member in the team. And The overall Betterment of that team in meeting the needs of patients on the ward and getting patients who don't have to be what they used to call revolving door patients. People would come in, spend a week, 3 months, 6 months, go out, they're back again

And when I worked as a nurse, that's what I looked at. What makes people keep coming back? What can we put in place to get people to be resilient? How do we support people? Who do we refer them? To, to get that support that make them have meaningful lives. Every human being has a value, no matter how disabled or enabled you are

We are intrinsically the same. Our basic needs are the same. I brush my teeth with a certain brand of toothpaste

You may, because you earn so much money, use a different brand that's more expensive, but at the end of the day, we just want to keep our teeth clean. That's the way I look at it. So, by having people who understand the basics as such

Um, and looking at things like the Maslow's hierarchy of needs. Which is something I said. The people who use services and especially if you're doing co-production, you need to Get a bit of training or to understand the Maslow's hierarchy of needs

What are people's basic needs? And you'll find that a lot of people um from uh black and minority ethnic communities. It's usually things like housing that bring them into mental health services. Or disrepair in their housing

Or bullying, racist bullying, racist threats and things like that, which a lot of. People from ethnic minorities face, it is the racism within. The community where people live

That makes people unwell and breaks them down in the end. And that is what led me to have a breakdown is racism. And how do we get people better is by being able to talk about these things

And like I said, I spoke at that confidence uh about the care of um the NHS staff. How can you ask the staff to give something that they haven't got? And um I'll go back again to that interview. When the staff said, oh, we're gonna, because we're gonna work with this person, I said, look, I'm not here as a token

I'm here because my voice matters, and I would like my voice heard. We've done this so many times. We've come to the, we can all see who the better candidate was

You're saying you're gonna appoint somebody because you work with them does not wash with me. So they said, OK, let's just put down, let's put our papers and pens down and let's talk. Mm

What I heard was so revealing. And I just felt that righteous anger welling up within me. They said, oh, did you see that candidate? Uh Did you see the shoes they were wearing? or they were shiny shoes? Did you see they were wearing a Gucci belt

This was the black candidate that was being discussed. Oh, did you see they were talking so fast? Did you understand what they were saying? Yes, they spoke with an accent. Yes, they spoke fast, but did you understand what they were saying? Yes

Oh, they should have been drinking water just so that they can take a break from talking. Why do you want to tell somebody in a meeting, drink water? This is an adult. If they want to drink water, there was water there, they drink it

Oh, did you see they were using their hands? Were the gestures threatening? Did you feel threatened? Were they inappropriate gestures? No, I said, I'm talking. From an ethnic group, and I use my hands. Are you saying that when I use my hands that I'm threatening to you as a as panel members? No

So why are we? Being judgmental on this candidate. And I had by then I said I was, I had that righteous anger, and I said, Do you know what? I You don't want to give this person based on their race. You said the person needs to pass the, the candidate who gets the job needs to pass the face to face

This person passed face to face 10 times over because even when we've been reviewing how they answered, they gave better answers than that person and we had to actually take points off from that person. So, at the end of the day, why you don't want to give this person the job is because they don't look like you, they don't talk like you, and you're not going to go and have dinner with them and go on holidays with them. I said, and if you don't give this candidate the job, This is not the end of it

I am not somebody who's afraid to go to the newspapers. I'm not afraid to go on television, which I have done quite a few times, especially about accessing um uh crisis care. I had quite a few very bad experiences and talking to the trust and saying, look, when we are accessing crisis care, this is what, you know, we expect of the service

You're in a crisis and they'll tell you, oh, when you call in the uh crisis getter, oh, go and have a shower. I've had 10 showers. What is a shower going to do for my crisis? Oh, go take a walk

Excuse me, I'm in a neighbourhood where there are racists who want to attack me when they see me in daylight. Why would I want to go out at night like this and risk being attacked or being racially abused? What good is he going to do my mental health? It's cold out there. It's snowing

I can't afford a very thick jacket. I'll end up getting a cold because I'm outside, you know, you need to look at practical things. Don't just give people irrelevant things

Do you not think that that person would have, they probably took a walk and that didn't help. You know, it's like getting to know people, asking the right questions, being sensitive when you're dealing with people. I've used the crisis line quite a few times and when I talk, if it's people who have an understanding

Oh, have you tried this? And I'll say no. Um, by the way, you did say you worked, what work did you do? Oh, and quite a, a lot of the things that I've done is, you know, the staff have come back and said, you know what, so you're very intelligent. When I came into services, they made me feel stupid like I had nothing to contribute other than stapling things

And staff would say, no, yeah, you know, you, you're a good advocate for, for, for, for uh people who can't speak for themselves. Why don't you do this? So some of the things that I've done have been people who have been appreciative of me and seen that potential that I have and have just given me that little nudge. To get where I am today, where I'm not afraid to stand up and talk about issues of racism, and like I did at that conference, because you'll find with COVID

Lots of Staff who suffered from COVID, or people who died because of COVID, with the black and minority ethnic people. The stuff. Why? Because of the racist policies, you don't have many

Black and minority ethnic people in the higher echelons of the NHS. Most of the BAM staff are band 2s, 345 who are interfacing directly with patients. Those are the same people who were not given adequate PPE and that's how the majority of BAM people died, as well as the consultants who mainly were at the lower level of, uh, you know, of the uh hierarchy in their teams

They were interfacing directly and we all know the scandal with PPE. Either they weren't given PPE or they were given PPE that had expired. And that is why

But they tried to turn around in the first, in the first, uh, you know, when they started looking at COVID and uh the COVID death, they were saying, oh, maybe it's because of the ethnicity. No. It's not my ethnicity

It's because you didn't give me PPE. You gave me expired PPE. That didn't protect me, and that's how stuff, and that's what I said at the confidence that I spoke at

I said, it's not treating people equally because some staff were being given the PPE and others were not being given. So, you place a higher value on certain people than other people. Why? So, um, yeah, and then at the end of that, quite a few people, um, quite a few people, uh, ended up saying that um When, when, when it ended, they turned around and said, uh, came up to me and said to me, so that was very good

And uh can you hear me? because I just need to stand up. My body's a bit stiff. I get like that

You remember the fibromyalgia. I just, I mean, so very quickly, so what happened is quite a few staff came and they said they were leaving the trust and I had to say, say, and they I said can I break, they said to me, you can break confidentiality. Tell the staff, uh, we'll talk to the directors and the senior staff, and they mentioned, they said, look, where we go and park sometimes because we work in the community, we get parking tickets

You defund the parking tickets to the white staff, but you don't. Blatant discrimination, blatant racism. To round all this up and conclude

That staff member that I told you about, the black staff member who got that position because I stood and said I would take it to the papers and way it needed to go. They ended up giving that person the job. A few years later I bumped into them and I said, Oh, what's happening? As people asked me, you know, mentor me and encourage me to go forward

I said, have you gone forward because the person had the potential. And they said, Yes, there was a job. I applied for it and I was interviewed by one white person, very senior member of staff

I said, were there any people from the patient experience partnership as we had said in co-production, we want from a certain band level of staff, there needs to be somebody from the Equality and diversity office. A staff member And a person from black and minority ethnic group, person who uses service or an expert patient. That's Those are the two people that need, that have to be in that interview

And the person said, no, there was neither. I said, did you get the job? And they said, no. I said, right

This is several years back before they had data protection and all that. I had all the email addresses of everyone because I did lots of work and I emailed them and I said to this person in particular, this is what happened in your interview. And I mentioned the Gucci belt, I mentioned the shiny shoes, I mentioned the gestures, and I said, and I said that is what makes us individual

So who are you to tell me that I must behave in this way when I'm a grown-up person? I said, that's what they did to you. At this confidence, that same person was the one that was saying to me, uh, the, the senior managers were saying to go tell her to come off because the things I was asking, they didn't want to hear. And I said to this uh I kept saying to this person, no, no, no, I'm still talking

I said, I've got questions, I'm not repeating myself. I am moving things forward. So, Let me finish

I've just got a few more things to say. And I did end up saying all the things I wanted to do. And in that meeting, guess who was uh uh the, the chair of that was a BA person who was an expert patient, and they were the chair for the uh uh uh for service users, and that was the person sending stuff to tell me to sit down

So sometimes even our own, sadly. But they are in the minority, and I'm glad I've got people like yourself who mentor me, encourage me, and I in turn mentor and encourage other people, and I would make sure that all, every voice is heard and changes are made to listen to everyone. And this, the senior staff member, the black person came to round up everything and uh you know, um conclude uh for the day

And they turned around and looked at me and said, you are one hell of a person. And I said, what do you mean? They said, you know, I wouldn't be in this job that I am at such a senior level, if it wasn't for you fighting for me from day one. And we've got an African saying the word Ubuntu

Ubuntu I am because you are. And that's what this senior member of staff, in front of directors and all their colleagues and everything, and said, Sue, I want to thank you for, from the bottom of my heart that you made it possible for me to join this trust and to be in the position that I'm in. And he wasn't ashamed, he shed a tear, and I said, don't you start because you'll get me going

And. Yeah, so it's just nice when you can do things like that. And I honestly didn't expect this person to say what they said

And they said it's because of your tenacity. You, like a dog with a bone, you won't let go. And this is what we want to try and build up in people who use services and people who are going to go into co-production

No. The, the key is in the word production. You can't go in when you don't know what the product is

So they need to know what the product is. And how to deliver their product. A product is healthcare

Yes, they're now running it on business models, and I asked a long time ago. Since when was People's Health a business? It's not a business. If it's a business, it's supposed to be a caring business, not a business that looks at profits and seeing how many people they can exclude from a service

So people need to have that empowerment to know what the product is. They need to uh be able to speak confidently. Fairly Without fear And To be able to negotiate because you have to negotiate to get to uh, an equilibrium and just learning what the nuances are

And I'll let you, the final thing that I found helped me initially when I was doing this co-production work. If I spoke and said, gave a suggestion, oh this, that and the other, they'd ignore me. And there was this particular white service user and um you know, when we've got a break and all like, don't you think that this is like this? Uh, maybe you can say it

And the person after the break would go and say, oh, why don't we do? Oh, that's brilliant. I would have said it maybe a few meetings before, but I'm completely ignored. But when I tell this person, and of course, lots of changes came by me channelling the ideas to this particular white service user

And it came to a 0.1 day where I had to laugh in a meeting and I said, you know, that's something I said 5 minutes ago when I said it, nobody commented or anything. This person, I actually told this person what to say

They've said it now and you're saying that's what we're going to do. I said, for all these years, I know you don't listen to me. So anything I've ever wanted to be changed, I spoke to him and he

So we also need to find allies and uh I'm just thinking you're such a cunning fox you are getting. Coming Fox, um, getting, it's been wonderful talking to you, Sue. I'm just conscious that in 10 minutes, I have to speak to somebody else

Some. I like talking, but I think I had come to a kind of conclusion myself anyway. So, um, what I'll do is I'll drop you, I'll give you a call about what next

So, I'll give you, send your consent, and we've got a small thank you, um, nomination fee, which I'll sort out for you, OK? Oh, I wasn't expecting that. I, I do this for nothing. But thank you

It, it's nice to be appreciated and I do appreciate it. OK, and I'll speak to you later then. OK, thanks very much

Bye bye bye..