Genetics Engage - Movember Event - Prostate Cancer DISCUSSION WITH SASHA AND OUR GUEST, SURESH RAMBARAN 00:00:06.180 --> 00:00:44.880 Sasha Henriques: Hello, so you know me, I'm Sasha from genetics engage and today I'm being joined by Suresh Rambaran, who was a specialist and nurse in oncology for many, many years. And the first be me cancer information specialist and worked in prostate cancer, since about 2004. And so Suresh and I met at an event that have very little to do with cancer, actually. And I was so interested in his experience and knowledge and I thought we could get him for a quick chat. So, good morning Suresh and thank you for agreeing to speak with me. 00:00:45.000 --> 00:00:47.070 Suresh Rambaran: Good morning and thank you for inviting me. 00:00:47.280 --> 00:00:56.940 Sasha Henriques: You're welcome. And so I guess the first thing I want to know, really, is what made you and becoming that like tell me that journey about deciding to be a nurse. 00:00:58.500 --> 00:01:34.260 Suresh Rambaran: Well as you know when the health service were set up in 1948 and then later on they required nurses to be trained and they were recruiting in Caribbean and I was one of those sort of Windrush generation that came from the Caribbean - different Caribbean islands there they recruited from and I came, it was an opportunity. I felt to come and do my training here and spend some time in another country and go back home. 40 years after I'm still here. 00:01:36.150 --> 00:01:43.410 Sasha Henriques: Same story as my grandmother, my grandmother came and I know, who did you come with. Was it just you or what did you come with friends or... 00:01:45.210 --> 00:01:56.460 Suresh Rambaran: I have cousins who came before me and friends. But you know, I like, follow them. They were here, but when I came, I came on my own. 00:01:58.740 --> 00:02:04.830 Sasha Henriques: So you came specifically for nursing. So where did you do your training? What did you start in specifically 00:02:05.160 --> 00:02:45.750 Suresh Rambaran: Yeah, hey, when I came. Obviously, when you're applying for these jobs. You don't look at what part of the UK you go in. I've just applied and where you accepted you go, so I was accepted in Rochdale in Lancashire. And I went there and obviously in Rochdale, wasn't very diverse as perhaps other big cities. However, that doesn't mean things were bad. I trained in Rochdale and spent five years there and and I decided to move on and specialize in cancer. So I came to London to the Royal Marsden hospital. 00:02:49.950 --> 00:02:59.400 Sasha Henriques: And is that something that through your nursing, he became interested more in cancer or was that, again, just another opportunity that you went for? 00:03:00.150 --> 00:03:22.590 Suresh Rambaran: No, when I started to with the I got very interested and become more involved in cancer care and I spent many years there and did all my cancer training I left briefly and went abroad but came back to work at the Marsden. And when I left them as then I went to cancer information. 00:03:23.040 --> 00:03:48.600 Sasha Henriques: Information. I guess it's probably a bit of a similarity between us, because before I was a genetic counselor.And I was an information officer. I do science communication is my background. And so I guess I wonder why information rather than anything else was something that you found there was a bit of your calling, what what power do you think and working information had? 00:03:49.590 --> 00:04:18.900 Suresh Rambaran: Well, you don't want to be in the same jobs on time, sometime all the time, forever, information was an opportunity to reach out to people. And it wasn't hands on care.Reaching out to people and talking to them. While I was at the hospital, I had an interest in BME (Black, Minority, Ethnic group) work, where I set up a BME working party in order to improve service provision to make care more culturally appropriate, more sensitive. So that was my passions that I'm doing BME work. So when I left there I went to the Information Center, which at the time was called Cancer Backup, it is now run by Macmillan taken over by Macmillan. And we provide cancer information on the helpline, and support and I felt, you know, when I was there I keep wanting about the needs of BME people and why we need to make it culturally appropriate and have people from BME background working the frontline staff because you can connect with people in the front line. And it's really important that you have people can continue connect with the community. 00:05:22.650 --> 00:05:32.280 Sasha Henriques: You mentioned the importance of kind of BME staff being in the front line and you were really the first year mean us to develop the type of role that you were doing. And so what what were the challenges that you were noticing for BME populations, Black and Asian in terms of accessing and you know cancer services and information, what really drove you to think that that work was important? 00:05:49.110 --> 00:07:05.880 Suresh Rambaran: What is important because there was a low uptake of screening, a low awareness among the community and that is because they went targeted enough, they had their own taboo ideas about cancer and its effects. So one needed to go up to them, talk to them break down these taboos. And you know just connect with them so they will know more and go more in the wider community. I used to go to faith groups and all sorts of community centers and doing things like that. And I was fortunate because my employer, give me the opportunity. And after a while, I went to an organization called Cancer Black Care, which was the UK's first cancer support group for people of black and minority origin. So I worked with them for a while. And then I worked with various charities.Doing cancer awareness and cancer talk. And then for the last 14 years I went with Prostate Cancer, UK. 00:07:06.240 --> 00:07:25.530 Sasha Henriques: And so you mentioned taboos and you mentioned accessibility as well. So in terms of taboos, I guess, what are some of the common myths and assumptions you think that that makes it challenging for black men accessing cancer services? 00:07:26.700 --> 00:09:17.070 Suresh Rambaran: Well, oh man, let's say for prostate cancer. Think about the masculinity and, you know, some men concerned about their sexuality. If they didn't like the idea of having a rectal examination. And sometimes, some people associated that you know with homosexuality and all of these things, you know 'I don't want no finger up my butty' and that's sort of the argument. And one needed to go and talk to them and explain the situation. Why that is done. And nowadays when I give a talk, I say, so if you feel strongly about that, there is a blood test you can have as well. Just have the blood test, unless you have symptoms (then) it's important that they do the the rectal examination and I go to compare with ladies who have mammogram or having cervical smear. You know, those are very invasive things. So we as men need to take, you know, one of the thing about our community, sometimes you have to be direct and talk to them rather than, you know, have this gentle approach that perhaps English people don't want to offend people you know. I will talk to them and be direct and say, look, we have to take responsibility for our health and don't bury your head in the sand and things like that and they didn't feel offended with me telling them that. Could you imagine someone else telling them that. So I think that had a lot to do with coming from the same community I'm able to (talk to them). 00:09:17.790 --> 00:09:28.920 Sasha Henriques: One of the questions I was going to ask, is being Caribbean, do you think that has offered you some advantages to be able to have these conversations? 00:09:29.610 --> 00:10:12.510 Suresh Rambaran: It does indeed, I find especially I know my Caribbean islands. So, you know, if you're talking about Dominica, you know, I could mention something about Dominica, of course, Jamaica. Everybody know about Jamaica, I could tell them how much I love Jamaica as well. Of course, I like to big up my island. Because often, as you know, we lumped here in the UK, as all Jamaicans although we, in many ways, we are one thing, we have slightly different traits and we feel passionate about that as well. I always have to add my beautiful, big up Trinidad whenever.. 00:10:15.120 --> 00:10:33.420 Sasha Henriques: Yeah. Yeah. And I really liked what you said about kind of celebrating the differences that people have. And and showing that you have an appreciation for their differences and because it sounds like that's that's a way to connect with people actually if you know something about who they are. 00:10:34.530 --> 00:11:23.220 Suresh Rambaran: Yeah, and it goes down very well, you know, based on that I get, you know, I'm retired. Get a lot of invitation to do talks.Recently I was on Eddie Nestor doing something similar to what we're doing now and I was on that program. I go to BBC Radio London often to talk about black men and prostate cancer. Fortunately with my job, I had opportunity to go to the community more. We had a special project aimed at the African and African, Caribbean community which I used to help lead on that. 00:11:23.610 --> 00:11:52.200 Sasha Henriques: It sounds like you're very in demand.So even though you retired life really is still very, very busy for you because you're such a and a wealth of information. And one of the things I guess I wanted to ask about so we spoke about maybe the perceptions of and the communities that we're working with and and how to engage in them. What are some of the practical challenges you think that people have accessing services that you experienced in your career. 00:11:53.730 --> 00:12:54.750 Suresh Rambaran: Well, you know, for example, when I when worked at the Royal Marsden, I notice we have few BME patients. Yeah, so I raised this with the managers, you know, someone say, well, we are in Chelsea and there are not many BME people there. So I explained - because people are referred to all parts from all parts of the country to get treatment there - so it's not because we in Chelsea, that doesn't ... but it is lack of awareness. Sometimes the service you provide, you want to make it culturally appropriate and also culturally sensitive make people feel welcome and if the system doesn't make you feel inclusive you sorta reluctant to go to that place. If that makes sense. 00:12:54.780 --> 00:13:17.910 Sasha Henriques: So there's something about the way that something feels makes it inclusive, as well as kind of where it is and how you get to it because I know we've spoken before about, you know, the road show and things that make things physically and accessible. But there's something about the organization itself can make it feel in accessible as well. 00:13:18.720 --> 00:14:10.590 Suresh Rambaran: Yes, if we don't have service provision that is culturally inclusive or diverse, people are reluctant to go, people have to remember we have bad experience of previous ... many years ago and that makes people reluctant even to...there's a low uptake of people in the BME community doing research. So we have to be more...could consider these issues and make it more appropriate to attract the various communities to come. 00:14:12.360 --> 00:14:15.960 Sasha Henriques: When you say that because we it. It almost seems logical but it doesn't happen all the time. Is it hard? It's a hard to make your service culturally appropriate? 00:14:25.980 --> 00:15:13.830 Suresh Rambaran: I don't think so...you know what the recent Black Lives Matter woke people up a bit that they have to do something positive to make it more...And I think we need to be more proactive and there are some changes, but we need to be more proactive in doing and making that change. So we feel more inclusive. We are part of the community, we are citizens of this country. And we have equal care and so the authorities or the managers need to be more aware of that. 00:15:15.930 --> 00:15:29.520 Sasha Henriques: So if we think about prostate cancer for a little bit. What are the risks for black men in prostate cancer, like how how much more common is it and you know what should people be looking out for that type of thing? 00:15:30.450 --> 00:17:22.530 Suresh Rambaran: Well, prostate cancer,one in eight (1 in 8) men is diagnosed with it usually Caucasian men; among black man it is one and four (1 in 4), which, you know, is double the risk of developing prostate cancer and we don't know exactly the cause, however, there could be genetic link. I've often said to - when I gave my talk to people - to look at the population. The population in America and the Caribbean's incident of prostate cancer is higher than white man or any other ethnic group. And if you look were they were taken from the slave trade, they were all from West African origin. So they are appears to be a genetic link although I cannot say conclusively 100%. But if you look at East Africa and North Africa, the incidence of prostate cancer is not as high. So there is a genetic link there. Interestingly enough, the Royal Marsden hospital with the Institute of Cancer Research is now launching research called PROFILE (https://prostatecanceruk.org/research/research-we-fund/ceo13-2-002-profile), looking into black men between age 40 and 69 to take part in this trial to investigate the genetic links. I know the University of Pennsylvania did one with Tobago, which is Trinidad's sister island and studies in America indicate that there could be genetic link. So they want to get it more conclusive evidence if it is genetic. 00:17:22.830 --> 00:17:45.450 Sasha Henriques: Yeah, and that's really important isn't it because you spoke about the lower levels of black men in the screening, but also in the research. But we need the research to kind of guide to the screening and have better treatment. And so what do you think are some of the challenges, maybe that you would expect from that PROFILE study with black men accessing that study. 00:17:46.230 --> 00:18:52.620 Suresh Rambaran: Well, I think if they're going to make it successful they have to work black groups or community groups to get people to sign up or enroll into it because they will find it difficult if they go there and say.. you know, listen...And I don't mean this in an offensive way - where they send non BMA person to try and recruit them, you know, because from past experience where people don't trust them, sadly. And you know you see in the news or during Windrush generation - all that's happened to people who came here and what is happening currently about being deported and all that. So they don't trust the system and you need to have people like yourself or me to go and talk to people and show them the way forward or get them to enroll into doing research and being involved in research. 00:18:52.920 --> 00:19:55.110 Sasha Henriques: Yeah, and and that's that's not unique to you know prostate cancer or any or to the black community even. So when you look at you know research studies that have done this and done this well. There are lots of examples of using community groups like you've mentioned using BMA research assistants to go out into the community and then people are really actually quite open to take part in the research and I guess for for black men, there's even more of a drive for us to be in this research, because if we don't like the screening then, actually the only way to kind of tailor the right treatment and the right screening, actually, is to be involved in the research and get something that works for us. And so in your experience of kind of all the different organizations that you've that you've worked in, what are the ones that are really a good example of of engagement? What does that look like or feel like when an organization is doing it really well. 00:19:56.250 --> 00:21:53.250 Suresh Rambaran: Well, I think prostate cancer. When I think about 2007, we got funding from the Department of Health to work with the black community. And we got Benjamin Zephania to write a play. It's called De Botty Business (https://www.itzcaribbean.com/uk/de-botty-business-play-benjamin-zephaniah/). And we spent a lot of money investing in work with the black community and ensuring that we have black images and staff from our BME background to go to the community. We need to go to the community because they would not come to us. We need to go more to the community and put in the right staff on the frontline. So prostate cancer UK did a lot of that and they continue to do that. I've done work with (Macmillan) they're doing a similar thing and recently they got a grant to do new work among the BME community black community there where we are doing roadshows and going out to the community and doing talks. So we're doing that. With Macmillan, t's a big organization and the road show, I think, in my view, they needed more BME staff. Because one of the thing I notice you know when we on the road, to go and engage with the general public, they used to find a difference when I was with them or was only two BME staff, you know, the people would come and engage with us and talk. You know, especially if I'm going to talk to a black man I can talk to them a bit about home. 00:22:05.760 --> 00:22:28.890 Sasha Henriques:And so I guess one of the other things, you know, with Genetics Engage that we're trying to think about is not just as you said, kind of going out and working with communities and collaborating with other organizations, is how do we get more diverse jobs that we do and what your what your thoughts and ideas about how we can we can achieve that? 00:22:31.980 --> 00:24:13.440 Suresh Rambaran: We need to recruit more people like yourselves and more BME committee people trained to do this thing because genetics is important and you know you are genetic expert and can explain to them, it has a link with prostate cancer. You're aware and sometimes they needed genetic counseling as you see with breast cancer as well, particularly Black women, young black women and that was something, you know, when I was working for Cancer Black Care in the 90s and we had a drop in center and people come in and we added support for BME, I used to see young black women, and this was unusual. And I remember writing to the chairman and said we need to do some sort of research because there's so many black women coming in their 40s diagnosed with breast cancer. Generally, when we advertise we say it's over 50s that can get more risk to develop it. And then we added all these young black women. So it's important that people are aware of these genetic change and we people like yourself.And we can tell them why is it so important. We need to dispel some of the myths we have about research and clinical trials, they will listen to us and go forward to have genetic counseling, go forwards to have checks for cancer, different things like that. 00:24:15.600 --> 00:25:19.890 Sasha Henriques: What you're saying, I can hear how important it is that the communities we work with trust us and then sometimes as you said that trust can be built built much quicker and when we are similar to people or we understand their backgrounds as well. And there's also I guess something about the types of organizations that we work for, so you know you work much more with you know cancer in the population, and I work quite specialist in genetic counseling. But that awareness of each other's services helps people to be able to access me and I guess in all of my years in working in genetic counseling, I don't think I've ever seen a black man in the genetic counseling clinic and I rarely see black women in the genetic counseling clinic. And so there is something a lot to do about awareness and access to us in genetics. And so I think conversations like this are really useful because as I said, people who are much more in contact with the community to kind of show people the way to us. 00:25:21.000 --> 00:25:57.480 Suresh Rambaran: Yeah, and I think we too, people like myself who is working with the community, needs to be more aware of your work, so they can signpost people towards, you know, genetic counseling to people like yourself and say, here is someone who is doing this sort of work and it will be important that you spend some time with her. And they will understand and explain things to you in more details. I think we need to advertise perhaps the genetic aspect of it more. 00:26:00.330 --> 00:26:38.220 Sasha Henriques: And so this conversation is really useful because it gives ideas about the different organizations and places that we could really talk about genetic counseling and when it becomes important. You mentioned age. And so these are the things that for us what GPS and specialist should be sending people to us women, particularly young when they have more than one person in the family with the same thing when you can see it going through multiple generations that is criteria to come and see us just just that. And it's kind of the professionals, knowing that, but it's also the patients as well. 00:26:39.270 --> 00:27:30.210 Suresh Rambaran: Yeah, very important. I think our professionals even, you know even at this age, with prostate cancer is sad to see many GPs unaware of a black man's risk. And don't do the appropriate test on times and things like that. So I know they have a big (task) to know everything. But, you know, we need to raise awareness to them about the work you do about genetic counselor wise, important to inform them because we know, as I said, there's a low uptake of screening. A low awareness and we need to get that out there to get or community to come in. 00:27:30.660 --> 0:27:50.760 Sasha Henriques: In your in your career, what memory stands out the most and I mean it's a long career. And you've probably got lots of memories and but what what's a memory that really stands out for you doing this work? 00:27:52.470 --> 00:30:04.830 Suresh Rambaran: There is so much. I think one of the things I do, and recently I was having conversation with someone, when I was at the Royal Marsden, I approached the chief nurse, because I wanted to improve service provision for BME people and I set up, he gave me permission, to set up a BME working party, which I did and had various heads of department and that work lead to diet being more ethnic orientated, and inclusive, more food from an ethnic background, common prayer room, as you know, all hospitals have a chapel but if you have different religion there is no way to go and pray. And things like that. Also get information publishing different language, which was another thing and those things were made such a difference I felt and continue to improve over the years. For example, one of the booklet has when someone is receiving radiotherapy, the skin, then to pink or slightly red, so I said that's that's not the case with black (skin) you, so, you know, and the change the booklet to to make it more inclusive to have that. (recent example https://www.blackandbrownskin.co.uk/mindthegap). Similar thing, as you probably know with breast prosthesis. It used to be all white or pink or whatever. And nowadays we have breast prosthesis with different shades of color so it can match the person. 00:30:04.950 --> 00:30:21.660 Sasha Henriques: And I think that that kind of leads on to the other thing that I was going to ask, which is, what do you think has really changed for the better over all of the decades of this work. What are the real positive things you could say have have changed since you started? 00:30:22.740 --> 00:31:42.120 Suresh Rambaran: Well, we are making inroads. Slow be it. But we have made it and I mean know we have better service provision as the same with the breast prostheses. Things have been translated into different languages.We have to appreciate that we live in this diverse city. Yes, it may be English but not everyone speaks English and they cannot learn English as competent to pick up the information and therefore a lot of things has changed, but, we need that to not be a tick box where organizations just go and take it to a translation company and translate it from one language to the other. So often, they get that wrong. So what I tend to do is go do workshops with the community, let them read the translation and give us our feedback. So we get things that are culturally appropriate and the words to say and use in the different languages that perhaps translation company won't do. 00:31:42.450 --> 00:32:26.550 Sasha Henriques: Yeah and that that's so important because you know, when you think of translation, you can just, like, think of the word and then think of the word in that language, but particularly for what you do and I do. It's actually not just the science. It's not just the words there's meaning attached to it. And so sometimes the translation isn't quite right, particularly for genetics, because there are a lot of words that just don't exist in other languages that are in English. And so you kind of need that community perspective on helping you get the message across. So I've taken up a lot of your time now, and so was there anything that you wanted to share with me that I didn't ask you 00:32:28.800 --> 00:33:17.040 Suresh Rambaran: What can I say, I just say I feel passionate about it and we as a community need to work with each other and help each other to get our message out there. Sometime our committee is misled, you know presently with this Covid virus. You may have seen a lot of conspiracy theories and we have to reassure people and they would not be reassured with other people say Caucasian people; they need people like yourself and me to talk to them explain things and well this is not the case, you know, lead them to the right direction. 00:33:17.340 --> 00:33:26.520 Sasha Henriques: Okay. And, what's your biggest hope for the next 50 years what what are you hoping would really change? 00:33:29.610 --> 00:34:52.560 Suresh Rambaran: I think If you look at the TV now you see advertisement, practically every advertisement has a BME person now. But we may need to get more out there. I was interested to find out that recently the hospital set up a BME group and within the hospital they said they want to have meetings with the team so they can try and ensure that more staff is recruited from BME background and in senior position as well. Not just, you know, grassroots workers but senior position because that's another problem. There's no role model for them to aspire to be and we need more...So the hospital is in consultation with the BME group on how best to go forward and hopefully these changes will make a change in the country, but I am hopeful. What happened, sometimes it depends which government is in power. The attitude towards that. But, you know, we went through hard times with difficult things, but we hope it will be different in the future. 00:34:53.640 --> 00:35:00.690 Sasha Henriques: That's lovely saying thank you for your time. I will ask Mavis to come back in, in case she's got any questions. 00:35:08.700 --> 00:36:22.830 Mavis Machirori: Okay, so I really enjoyed this. I don't have any questions, it was really interesting. Thank you, Suresh and I think for me, one of the key points that I got from just listening to you is the idea that health and politics are not separate. So we can't talk about the health of Black and Asian people without talking about Black Lives Matter without talking about Windrush. And it's incredibly important to always have this at the back of our minds. I really liked what you said that, you know depends on the government and what else has been happening. And you see this time and again in in care because if a government doesn't look after certain populations, then already that experience of being a citizen is diminished. And you mentioned that if you don't feel part of the community, then you're not going to go and use those services and it always reminds me of that phrase that we continue to try and move away from which is that, you know, Black and Asian people are hard to reach. But you said it yourself. We need to go out into the community to change that service. 00:36:22.860 --> 00:36:23.430 Sasha Henriques: It's not their job to reach us. 00:36:25.050 --> 00:37:10.020 Mavis Machirori: Exactly. It's not that people are hard to reach, it's that we're not trying hard enough. And if we, you know, just provide translation and it still doesn't make sense. And I'm just going to look at it and go, this is absolutely meaningless. So there's a lot that you've said that I think is really, really interesting. For me, it's the education, it's the staff, leadership positions. I know Sasha has been saying this from the beginning. We need people in leadership. It's not just increasing the number of staff working in hospitals from local communities, it's about people also leading so we can't have a lot of people in bands sixes or band fives. We need people also leading departments. So yeah, I could also go on forever. 00:37:17.640 --> 00:37:26.370 Suresh Rambaran: I think we are singing from the same hymn sheet. Walking with them, you know how it's important to go out there. 00:37:27.750 --> 00:38:04.710 Mavis Machirori: And you can see it, like you said at the roadshows, it's as if everyone is coming to you, like you could go speak to people, but they want you. Because it's not just about looking the same, it's being able to connect, so you can actually talk to people about 'oh I remember being at home' and then you connect that way. Because when you start health conversations, you don't just go to somebody and say, 'Have you done your prostate cancer test', you actually have to sort of find a way to connect on a human level and then have these conversations in meaningful ways. You know you've given us a lot to think about and a lot of expertise that I think we would like to draw upon as we continue to grow. 00:38:15.570 --> 00:38:25.650 Suresh Rambaran: Know, thank you for inviting me and I hope it's, you know, it was one thing but if there's anything in the future, I'm happy to. -------------------- Thank yous and end of discussion with Suresh ---------------- REFLECTION with Sasha and Mavis 00:39:48.180 --> 00:40:37.200 Mavis Machirori: Okay, so that was an amazing conversation with Suresh. I really enjoyed the conversation, Sasha, and I had so many things that I wrote down that I just think are some highlights from somebody who was listening. I think one of the things that Suresh said that I really loved was the idea that engagement is really important. And it's not just engagement of, let's do translation of information leaflets from one language to the other, it is engagement to say let's go to the people who speak that language. And what does this actually mean, is this booklet, you know, actually meaningful. 00:40:37.290 --> 00:40:59.670 Sasha Henriques: Rules of engagement. Like he really kind of illustrated what that really means. Yeah, there's collaboration in there. There's working with other people. There's hearing other people's thoughts. There's working with people who are different to you. Then doing things that are outside of what you're used to. He spoke about poetry and plays and food. And so it was just related. 00:40:59.730 --> 00:41:48.840 Mavis Machirori: Meaningful! And that's the thing that I think is really important when we talk about engagement, it's not tokenistic. The moment it's tokenistic people can tell. If you say the things but don't do the work, it's so obvious, and especially because of, you know, something Suresh touched upon that I think is really important that is that first of all, the Black Lives Matter movement shows that there is space for people to actually be meaningfully involved in things. Not just, oh we need, you know, two black people or two Asian people to take part in this thing. It's actually, if we actually listen to people we need to respond to that. And the other thing was the Windrush, so the experiences that people bring to understanding health services shape, whether they actually want to continue being part of those health services. 00:41:49.980 --> 00:41:50.460 Sasha Henriques: Absolutely. 00:41:50.670 --> 00:42:00.090 Mavis Machirori: Yeah, so you talk about engagement, you have to absolutely bring in the politics of what's been happening to communities outside of the healthcare system because it's all intertwined in the end. 00:42:00.150 --> 00:43:00.960 Sasha Henriques: All intertwined yeah. He, and you know I guess people have this concept as you said that you can, you know, have a black or an Asian person and then that's going to make the difference. And I've said this before, about what makes you an inclusive and a culturally competent practitioner. And it's not what is endowed in you because you are non white. It's the attitude with which you do that work. And that's what he spoke about that. Actually yes on the surface. There's, this interaction that people can quickly make with me because they can see that I will have shared experiences. They do. And so they want to speak to me. But what he does is, well, I speak to them about where they're from. I speak to them about what their differences are. So he's being culturally appropriate and inclusive. Because actually, if he didn't do that, regardless of the fact that he was, you know, a BME man from the Caribbean, it wouldn't make all that much difference.It's also about how he behaves in that institute. 00:43:00.990 --> 00:43:16.260 Mavis Machirori: Yeah, exactly. I know we spoken about this before. Yeah, and I think I asked you outside of this, but I will ask you again. What do you think about staff being just deployed because they are of the same skin color. Yeah. 00:43:16.320 --> 00:43:33.900 Sasha Henriques: Yeah yeah I've literally seen examples of where that really does not work and and it's not a nice feeling that you are put there just because of the color of your skin or what cultural backgrounds people assume that you have, that regardless of what you look like there are qualities that will make you good for that role. So, we're not doing this. We're not doing diversity or doing inclusion or getting more people into the road, just for the sake of it. There are special talents and competencies that they are bringing that will make your service better. And so it's both of those things that you're looking for that you're missing skills because you're missing this group of people. Not that missing the group of people, makes the skills, not there. 00:44:02.880 --> 00:44:18.150 Mavis Machirori: No, exactly. Yeah it's understanding what it is that is cultural, right, and cultural is not just skin, it's a lot deeper than that. So you can connect to people... and I love that, you know, everyone who is from the Caribbean is not Jamaican. 00:44:21.030 --> 00:44:22.110 Sasha Henriques: And being Jamaican, I wish that were true because we like to think we are the whole Caribbean. But it isn't. 00:44:25.980 --> 00:45:11.900 Mavis Machirori: No, it isn't. And it's the same thing. I know, it's sometimes easy to group people, but you know we we hear this in the same as Caribbean people we hear this for African people. Oh, yes, we are similar in some regards, but we're also different and understanding what those differences is always going to be really important for people to feel as if somebody's listening to them and is really interested in their experiences and it just like something that, you know, that both you and Suresh talked about. When people come when people have been referred perhaps to genetic counseling services and you said something that really resonated that you haven't seen a black man in a genetic counseling clinic. 00:45:12.300 --> 00:45:14.940 Sasha Henriques: In a cancer genetic counseling... 00:45:14.940 --> 00:46:25.380 Mavis Machirori: Yes, and it reminded me of, because as you know, I did the research with Black and Asian women along breast cancer and test genetic testing for BRCA mutations. And I remember trying to recruit their brothers, or their family members who were men. And again, as Suresh said, the women used to say, well, they're not going to take part because, again you know it's a thing about their masculinity. It's in the research. Where like the language, that masculinity, the taboos around that. I think we still need to unpick because it's really important. You know, we're only starting to maybe understand now for women, what those experiences are. And I know that just because we don't see that many women for breast cancer genetics doesn't mean that they're not interested. And certainly in that research, you know, people were interested it's just the service wasn't working for them. Once we understand what needs to change, like, Suresh said, and I think, actually, I think you said it: take part in the research, change the things that don't work.But we can't do that if we're not participating in the research right. 00:46:28.650 --> 00:46:34.380 Sasha Henriques: Exactly. 00:46:28.650 --> 00:46:42.330 Mavis Machirori: It will always be, well this is what's already there. Take it or leave it. But I think the more we take part in research whether it's prostate cancer or breast cancer research, we can change the way practices are enacted on us. 00:46:43.140 --> 00:47:10.440 Sasha Henriques: It's that ownership, isn't it, really, and he spoke about the experiences that our communities have had that have not been great that have been negative, this is factual and as he said, it does have an effect on how we access the services. So part of that is for us also to take ownership. Therefore, again research, take ownership of the data, take ownership of the service. Because you can trust something if you were the one that guided it, so guide it. 00:47:11.310 --> 00:47:19.560 Mavis Machirori: Exactly, yeah. And I mean the genetics is really interesting because there's definitely a lot that's happening within prostate cancer and you know, why is it that black people are more likely to get... 00:47:24.120 --> 00:47:28.410 Sasha Henriques: Why!! 00:47:28.710 --> 00:48:41.970 Mavis Machirori: diagnosed with cancers, more likely to get diagnosed at a later stage even though they develop it a lot earlier. So it's a combination right? GPs may be - and this is not to slate GPs, because everybody works incredibly hard. But there has to be some way of saying actually not everyone's the same. A person who comes with concerns, they might not use the right language, but you know, to understand where those concerns are coming from. The people are saying listen in my family, I have seven cousins or seven brothers who have had something. I don't know what it is - investigate! You know, because worst case scenario, "worst case", nothing happens for care, but actually for that person, they've been reassured. You don't want somebody coming back two weeks later with a lump that's grown the size of something and then people will say, because, I've had this with the conversation with other women, saying, well, you know, my mom was already complaining about a lump growing in her breast, and she saw the GP but it took another three or four visits to convince the GP to get her referred. And it shouldn't be about, you know, patients convincing healthcare professionals, because after a while, people will just go, Well, I've tried. 00:48:43.980 --> 00:48:44.280 Sasha Henriques: And it's that thing isn't it, we have thresholds for referral for all sorts of things. And so your ethnicity or, you know, the fact that you don't have access to your family history like there were there were other more nuanced thresholds that we kind of need to be aware of and that will have a different impact in particular groups. And there's a bit of work around that really, yeah actually that sometimes what we use to restrict people from care, might actually be the thing that we look at that helps them access care. 00:49:17.820 --> 00:50:15.900 Mavis Machirori: Absolutely. And the this is definitely right up where I'm always talking about like, where are these data sets coming from, who has been collecting the data, what data has been collected about them. Because if people haven't been participating, for one reason or the other. There is no data so they can profile people with non existent data and then the like the downside of that then becomes, we can't then look after people because we don't have the data to say something meaningful about their care. And so for this, research is really, really important. And we talk about increasing diversity, we need to also talk about increasing diversity in the people who take part in research because it just provides more information that we can then use to change the clinical services. So I think it comes round. 00:50:17.160 --> 00:50:18.000 Sasha Henriques: It comes round full circle. 00:50:18.600 --> 00:50:50.910 Mavis Machirori: Yeah. And so that was really interesting. I think we have a lot on our plate I sort of felt inspired by Suresh but also daunted by the task ahead. Because he has done so much in his career. And yet, there's still so much to do. The more we know it's you know it's inspiring and I think building a community around these issues is taking again. 00:50:50.970 --> 00:51:20.340 Sasha Henriques: Absolutely, that that cross and professional community of us is really something that we as daunting as the task is, you know, that's why I kind of asked, Well what's hard. What is it that's hard. What is it that's difficult to do. And actually me having a chat with Suresh wasn't difficult to do. So, so there are lots of things that yes, there are things that adults. But there are things that going to make a difference are quite easy for us to do. So we need to grab the easy wins. So that that I think that's my my takeaway is have those conversations in whatever space and with whoever you meet because you know some real knowledge and power sharing can happen. So, yeah. 00:51:36.510 --> 00:51:55.650 Mavis Machirori: So on that note, I would like to say it's been a great Genetics Engage Movember prostate cancer discussion. And I look forward to the next events that will be doing and tackling a lot of these heavy and not so heavy issues around engagement and genetics and that that's attending passivity. 00:51:56.790 --> 00:51:59.100 Sasha Henriques: Yes, thank you. Thank you.