ARIADNE was a 12-month study addressing the impact of the pandemic on access to, and experiences of, mental healthcare among people from Black, Asian and Minority Ethnic communities (global majority). 

The project used the EBCD (Experience Based Co-Design) method in four NHS Trusts in Manchester, Sheffield, Coventry and East London. This involved interviews with key stakeholders – service users, carers and practitioners – about their current challenges and potential ideas for change.  

This is a conversation between one of the facilitors of the research and Emma Marks a Public Patient Involvement lead for Applied Health Research at Birmingham University

buttons. So there does it come up on your thing? The record? Yes. And I'll just say, OK, then. OK, lovely

Um, so hi. Um, I'm Emma. I'm from, um, Birmingham University From the, um uh, public engagement, um, and involvement

And I'm here with, um Shahina Shahina. Would you like to just introduce yourself? I'm shahina. I'm a facilitator for the Arabian, um, research that's been happening for Warwick University, uh, championed by, um, Dominico and his team

So I I for an interview with very much to talk about that. I appreciate your time. Shahina

Um yeah. So, um so, yes. So, um, really, this is just an opportunity to kind of have a bit of reflection on the event cos we were both at the event, um, in July, and, um, it was it was a lovely hot day

Then it wasn't. It was we were out on the terrace. It was It was It was very nice, but it was a really interesting event, and we we were chatting, um, and so it was really kind of just an opportunity to get your thoughts, uh, about what are the key things that that you kind of remember from the event that you felt were, um were you that you liked? Um, can you perhaps kind of give us AAA bit of, um, information about that? About what was it that you took, um, from that event? OK, so for the audience, because we know what we're talking about

I just want to say that, um I've been involved with AAA. Um, Ariadne. Sorry, Ariadne

I can't say that word properly. I know. Me neither

Yeah, so, uh, with throughout the last two, research programmes. So they do a co production with, um, you know, with the professional and, um, with people with lived experience as well as facilitators. So I was one of the facilitator

I'd like to think so. Um, the event was about bringing all the research, all the things that we talked about in in the meetings and to, um uh, you know, bring them out. So what was what was talked about what was the outcome and to, uh, pull together what our thoughts were, and we had slides, um, slides to represent what each person talked about the professionals that were behind, um, with the research team and obviously new ideas of how to bring the community together

So, um, the research was about, um, how to ensure the services culturally competent for ethnic minorities. Part of that was a great deal and to improve their mental health services. And that included talking about, um, the service providers from mental health Team and obviously the lived experience people that came to the meeting, Um, they expressed how they would like to see changes so that that event was to bring all that together and then all of us to see what were the outcomes

And it wasn't just a local London event. It was, um, a national event. So, um, it brought, um, people from all areas of, um, England and it It was an opportunity to meet everyone face to face because we were talking, um, on the zoom meetings

And it was really lovely to see everyone that day as well. Right. So So what were the things that you, um, thank you for kind of giving AAA bit of an overview around it? What were what were the things that you felt, um, really kind of hit home for you? About the the event

Some of the some of them. Some of the feedback. What were the things that that resonated for you? For me? Um, getting involved in this kind of work means that I want to bring changes and to see the, um I just declined The, um, for me, uh, to to see changes is what is my interest? My principle is coming into this meeting and to, um, voice voice for people that may not be able to

For example, mental health is a deep, deep issue. It's stigmatising. People want to have change, but lo, lots of people don't have the opportunity to come to, um you know, this kind of meeting and express their views And what? One of the things that I felt humbled is I would like to to not only express it but to have an event to try and bring things together and move it forward and try to try and deliver as well, so manifesting what we discussed is very important part of the event

And, um, to hear it as a group in one room was very important. And the voices that came together, um, they they also expressed the kind of future strategies. Um the future things that we need to do, acknowledging the kind of thing that we need to do and people sharing experiences as well in that event

Um, it was a lovely event. It was tailored to, um obviously, uh, you know, we talk about these things. One of my concerns, um was we're always talking

I said to Dominico that we're always talking about how do we ensure that this actually transpires into the actual strategies that you are discussing? So he said, um uh, in the meeting that we'll try and get more funding to try and over, you know, overcome those issues and see how we can go out forward. So he did secure funding And that me, um those meetings in the last few, um, meetings that we did was about how we can help them, um, deliver. So in the meeting, in the event we had, um, talk people talking about, for example, one of the ladies, Um, I don't I can't remember her name

She was saying, um, we should have an open room where people can come into and just just enter and spend the day there or, um, just walk in and feel free to talk to people. And, um, there'll be a bed there, they can talk about their issues. It was just a free space, a communal space that people can't come with if they felt that they had nowhere to turn to

So, you know, currently, um, you'd have to be sectioned, or you'd have to go through the process with the GP and you'd have to, um, get a referral. And it all takes time. It's time consuming

It might not always, um, you know, cater for what you might need to address as a mental health service user. But that is an open space. It's a hub which I've been talking about all this time, and I was elated to hear that

And I actually commend what she's saying because we do need hubs because there's too many rigid, um, difficult processes for people to get what they need. And that event showed that we can come together. We can talk about it, and we can deliver because this this hub is being talked about

But it's also been delivered, and that gives gives me reassurance that we're not just talking about it. That event gave me in a better insight into what should be done and what is being done because I hadn't met that lady before, and that was an opportunity in that event to meet and hear it from her. And that was that was very important part of the event, because talking just face to face in the zoom doesn't really do it all

Yes, we can share our ideas, but how do we bring it about? And it was really nice to bring it in the room and have question time, um, to be able to ask directly the questions to these people. Absolutely. So, yes, I think, um, was that the the Tower Hamlets, um, proposal with the that they had a similar, um uh, community in in Italy, I think where the the services were brought to the community and if there was a community space, um, which was very much which was very interesting

And and and like you say, I think, um, when we had a conversation, you were saying a lot of the research, you know, there isn't, like, a loop a feedback loop. Um, around it. You kind of like you do something, and then, um and then nothing's heard of again

But, um, what I hear you saying is, is that it was it was, um, really helpful to see that actually, there was actions from that research, like some of some of the things that were identified. Um, all around having policy policy changes came into the room. We were able to listen to them directly

We were able to absorb what they were thinking. They use the slide shows to explain the kind of strategies they want. So they talked about, um, obviously, uh, talking to lived experienced people

But also, um, we had the opportunity to say what we want, which was relatable to ethnic minorities. Uh, biggest part of this was about how to strategize so that it meets the community needs as a whole for mental health. Um, this is just not We can talk about the, um, delivery for everyone, but there's also niche services that need to be met

That was part of what I came for. Because I, I find that, um, understanding the values and ethnic needs the minority needs makes the service a much better relatable and effective, um, service. And, um, there's so many loopholes because people are stigmatised

A lot of people deny mental health. They don't understand the concept of what mental health is. And a lot of people, um, don't want to admit that there's mental health or they're suffering from mental health because they're scared of what people will think about them until they actually have a a lapse

And then obviously you can't hide that anymore. And one of the things is we talked about policy changes as well. About alternative

Um I. I discussed that in the meeting. Um, medicine is not always the answer

The pharmaceutical companies are making billions and trillions out of people like the, uh uh, the live experience, Um, people that came into the meeting and we represent that this is not the ideal solution. And when the lady said about the to hand its hub, that will come in to effect. And people would have the opportunity to just walk in without having to go through this process through the GPS or whatever, because people don't have the confidence to talk

And if you're just going in there and no one's going to pressurise you and you just can be in a space and just feel free to walk in. That would encourage people because, uh, there's lots of people that will have language barriers that won't want to talk about it or be scared that they what their family might say. We we know, even from royal families, mental health to talk about

That is a great thing. Look what happened to Megan Markle. Um, uh, Kate, um, as well, because they don't really like to talk about mental health, do they? Um, it it's in every culture

Yeah, abs. Absolutely. Um, thank you for that

Um, so is is there anything else? Um, I mean, that that's really helpful in terms of, um What you what you felt was, um, was really important. And, um, is there anything else you would you would, um, change about the event or add or anything else you'd like to say about it? I think they could have been a bit more, um, focus on talking to lived experience. Um, patients that came

Or people who survived their mental health. Uh, breakdown. Um, there could have been more involvement from them instead of just hearing us

Um What? People were just saying there should be question time or a bit more focus on them because any policy changes advocating for this kind of thing has to have a professional insight. They need to listen to those people who have lived experiences. If you want more

Uh, how how would I put it culturally appropriate practises Where you actually, um, involved in the institutions to come together in sync and understand? Ask the patients. Like I said, um, in my, uh, speech, I said it's important to ask the people who have lived to experience what they want and they would be the driver. They would be the force that would help deliver this service properly

Um, II, I won't undermine what I say. Because, really, if you're going to really understand someone, then uh, you've got to ask them the questions. You've got to let them say you've got to hear them

Sure, sure. The follow up The follow up is really important. Yeah, yeah, yeah, OK

Shahina th Thank you. Um is is is that, um thank you for that For those, um, insights. I appreciate your time

Thank you, I. I was.

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