S8E4 Cultural Barriers in Healthcare ===

Narrator: This podcast is intended to support UK healthcare professionals with education. The information provided in this podcast is not a substitute for professional medical advice or treatment, and patients are encouraged to consult healthcare providers, including nurses, for any medical questions or concerns.

Hannah: Welcome to stoma and continence conversations from Coloplast Professional, where healthcare professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Patterson. I've worked in specialist care and I'm currently the ostomy care associate education manager at Coloplast.

Today we're talking about potential cultural barriers within stoma care and to do that I'm joined by Coloplast Ambassador, Farish Lakhani.

Farish: I am quite open about it, people know that I have a condition. We have a committee of like health professionals, they'll come in, they'll invite all the community and they'll talk about certain problems.

It's about just opening up.

Hannah: Hello Farish, thank you so much for coming back to join me again, how are you?

Farish: Yes, amazing thank you, it's been a busy year.

Hannah: As you know, we've come on to discuss today, well, we kind of touched on it last time when you came on the podcast about cultural barriers within health care.

And I know that's something you were so passionate about. And I really felt that last time we didn't get to give it enough time almost because it is something that we should all be more aware of. And it's certainly something that you are really, really passionate about. So I'd love it if we could talk a little bit more about that.

I mean, your own experiences, even your own advice. So. What are your main thoughts when it comes to different cultures and the barriers that they face within health care environments?

Farish: Yeah, so I'm from the South Asian background and um, I feel there's my, I think the main kind of concern, worry is that there's a huge stigma on anyone talking about kind of anything to do with bowels or stools.

Anyone really opening up about it and going to the doctors and I think I'm, I never really heard about kind of, Colitis Crohn's or any kind of bowel disease before I had it and you never heard anyone else talk about it It's just like this kind of taboo talking about stool. I don't think it's just in South Asian culture I think it's in a lot of cultures really kind of why would you want to talk about poo like?

Why would you want to talk about kind of having blood in your stool? And I think that's where I kind of feel really passionate about because I've been through it and I'm going through it I really want to tell people that it is okay to talk about it. There shouldn't be a stigma against it Yes, it may sound dirty or it's talking about stool, but really It can save your life and I think that's my main kind of passion at the moment to re open people out and start talking about it a lot more, within the South Asian culture especially.

Hannah: There definitely is a taboo out there, I mean I often talk about the poo taboo and it, it is that, and yeah I don't know why because it is one, it's something we all do, one way or another, we all do it. So, why shouldn't it be something that's discussable? And like you say, it's not just somebody having a chat about it, you know, as you go round to someone's house.

It could be a conversation that saves your life. I think it's so amazing you are bringing that out because it does seem to be that certain cultures, it is even more of a taboo, even certain environments, and I'd even say, I think men are possibly more closed about talking about things than even women are, women talk about everything and anything, and I don't know if it's because of childbirth, things like that, women are just not quite so, I suppose, Worried about talking about intimacy kind of things like that, but certainly with men It seems to be a very closed off subject in a lot of areas.

Would you agree with that as well?

Farish: Yeah, 100 percent I think I know things are changing nowadays, but it's about oh, I'm a man I can handle it and you don't really talk about things like stool or poo to other men You wouldn't go to the pub and sit there and bring up the oh I went toilet recently and there was like blood in my stool more likely you're going to be talking about football or, uh, what's going on at work and the kids and things like that.

It's not that kind of subject. However, like you said, ladies would like openly, if they go out for a meal, they'll openly talk about their health conditions and things like that. So there's like a double taboo there really, South Asian culture, and then you've got the kind of the gender side of it as well.

So I'm one of these kinds of people who are kind of trying to open up as much as I can with my fellow peers as well, to talk about it, to be open about it. So talk to family members about it. A lot of my family members, I've got a huge extended family. So just immediate family with cousins and first cousins.

There's about 60, 70 of us. So just educating them and telling them what I go through on a daily basis, the struggles, how I had my symptoms, what were the symptoms. And then once you start talking to people, then they do start opening up. I know my first cousin and my nephew as well. They both have kind of bowel problems as well.

Now they're opening up about it. We talk quite often. They tell me what kind of things they eat, what are the triggers that they see, the stress and what medication they're on. So I think it's about kind of Not being shy about it. Like why why do you need to be shy about it? There's nothing it can save your life by going to see a doctor.

So it's kind of don't be shy Let's talk about it and crack a joke about it There's always jokes about me and my bag and my bag for life and things like that. Why hide it? It's there and it saves my life and if it helps one person by talking about it, then it's successful So I think that's the main thing really and like I said within the South Asian culture There are a lot of you see It's very typical kind of ladies chatting, gossiping, oh, did you know this person, this person?

And everyone's getting away from that. Now, the new generation, they're opening up a lot more. They're talking a lot more. There's a lot more things on social media that's readily available. So within my kind of age group and younger, it's definitely a lot more open for sure. And I think. That's the way forward and whatever help I can do by speaking out about it is helping people for sure.

Hannah: So we've spoke before that you're quite active on social media within the South Asian culture promoting this. So what sort of groups are there out there? So if there are other people looking for sort of advice, support, what sort of groups are there out there?

Farish: There's groups out there that are just for young Asian professionals, which has nearly over a hundred thousand people on the, on the group.

So I put a post out at least once a year. I'll put a post out on there. And this, I put a post out I think about six, seven months ago. And I still got somebody the other day reach out to me and say, oh, I read your story, uh, the other day. And it really resonated with me. got colitis and I'm looking, I'm looking at further options now of a stoma bag.

Is it okay that we can chat? And that was really, really good. And I'm due to speak to him later on today. So things like that can, like, I won't give medical advice, but I can really give kind of. how I've dealt with my stoma bag, what to expect really, because generally if you go to see a doctor or you go to see a stoma nurse, they're going to tell you one thing.

But if you haven't lived with a stoma bag, there are so many more kind of things you need to know about mentally, physically, there's so much to a stoma bag. It's not just a bag stuck on your body and, and that's it. There are side effects. It's not, everyone thinks it's easy to have a stoma bag. Oh, okay.

I'm not going to go toilet anymore. There's no bloody mustard anymore and things like that. Then you've got other things that come around. You've got the leakages that you, you get, um, the kind of smell that you need to adapt to. You're very conscious when you go out, especially at first, are so conscious about having a stoma bag.

And people used to say, I can't see anything on you. You can't tell that you've got a stoma bag, but you're very conscious about it. The smell at first like I just could smell like poo all the time, but no one else could smell it But I could. I don't smell it anymore because it's been like six years, but back in the day, I used to smell it.

I was like, like spraying aftershave everywhere on the bag itself and things like that, but no one could ever smell it. You're conscious, like I said, with what you wear, where you're going out. Is there going to be toilets available to empty your bag? What I need to take with me? What kind of supplies you need to take with you on holiday and things like that.

There is a lot to think about to jump and have a stoma and I think By putting things out on social media. I put a post out a while ago about me on holiday and just beside the pool without my top off. I still, to this day, I still sometimes feel kind of people are looking at me. So people still do look at you because it's not widely, people don't like, I've never gone on holiday to this day.

And I've never seen anybody with a stoma bag, ever. Even though it's quite popular, I've never seen it. So, me taking my top off, sitting beside the pool, people do look, and sometimes I still do feel kind of, Oh, look at that person is looking at me, looking at me. And then I feel a bit guilty sometimes. For my family, for the kids thinking, oh look daddy, that person's looking at you and things like that.

But what I try and do is, I won't do it open, I won't always kind of take my top off. Sometimes I'll have a top on when I go swimming and I think it's about kind of just educating people and kind of opening up, showing people that you can have a normal life. And I try to have a normal life as much as I can.

Yeah, there are a lot of things that I can do, I can't do. However, I try as much as I can to kind of be as normal as possible in, in my day to day life.

Hannah: And that's it. It is those, you know, you said those early days are quite impactful in a lot of ways. And I remember when I had my new ta saying about the smell, it was almost to me like the smell got stuck up my nose sometimes.

It was like It was just there regardless. It was that smell that you couldn't get rid of and nobody else knew it was there. Being able to give that sort of advice to people that you will feel like that, but actually it will go after a while. It's generally you that's thinking about it and to have that conversation within your community, I think is so, so impactful because It's conversation that maybe isn't being had enough within certain cultural communities and to have you, what do I say, even six months down the line getting responses from there shows that people are looking for that advice and support as well, which I think is a really important thing to recognize as well.

Farish: Yeah, a hundred percent. I think it's important that there are kind of, I think in all kinds of, whether it's a disease or any, anything really, you're always trying to look for somebody who's a bit more similar to you, if that makes sense. So if you're, if you're a lady and you've got a stoma bag, you're more likely to, to look out for ladies who have got a stoma bag and ask them for advice.

Or if you're South Asian, you're more likely to ask a South Asian person because there are certain things like. foods, foods are completely different to what we eat. So it's about people asking questions about what can I eat? What can't I eat? What, what triggers did you get? What triggers didn't you get?

What are the cultural barriers? What will people say? How does it impact on the kids lives? So if I've, I would say I'm youngish, I'm only 39, so I'd say I'm youngish. So having a young family, does it impact having a family, et cetera? So it's always kind of having that kind of. similarity to yourself, both culturally, religiously.

However, you're more likely to kind of open up to them and ask questions. And I'm getting a lot of mails as well, reaching out to me. So I've had, I've put it over LinkedIn, Facebook, Instagram. I put it over everywhere so I can get as much impact as I can. And somebody can, people can reach out. So I've had professional people reach out to me on LinkedIn.

So it's really kind of encouraging. It's really good that. People can reach out to me and kind of open up because that's what I want, really. So if I can help one person, talk to one person, just to kind of make them at ease, really, because it's not, it's not a bad thing having a stoma bag. However, it can change your life.

Um, and that's what we're all here for. If you, if I've been through the experience, why can't I share it with somebody else? Really?

Hannah: Coloplast Professional offers a lot of educational material for specialists, nurses, and healthcare professionals. Visit coloplastprofessional.co.uk to find out more. I thinking possibly on a more negative front potentially.

Did you experience any barriers yourself throughout your diagnosis and your surgery process? Did you yourself feel that culturally you came across anything that was a barrier?

Farish: I would say that I didn't find anybody until about a year or two in who was Asian and who had a bag. And to be fair, that was somebody.

It was my uncle. I never ever knew that he had a bag. Oh wow. You just would look at him and think, no way, you would, you like, what does a person with a bag look like? That's the first instance, but he never opened up about it. He's obviously a lot older. He's my dad's age, about 64, nearly in his seventies now.

And once he found out, cause I was quite open about it on my Facebook. Once he found out that I had it. He then called my parents and said, Oh, Farish's got a bag. Oh, I didn't, I didn't know that. And I've got one too. And then he came over and then we spoke and things like that. So it's a different generation.

They're more likely, obviously, they're not going to go onto Facebook and put a picture of their bag and things like that. It's a completely different generation and what they got through. And now we talk regularly. He tells me about. his advice don't ever get an internal pouch or don't do this and make sure you eat properly and kind of be on top of the bags and things like that but now I'm kind of teaching him now because I obviously I do a lot more research I talk to a lot of people and I'm sharing my knowledge with him now.

I've never done this but I'd really like to go into a temple and we have lots of gatherings like all the time every few weeks there's like huge gatherings in temples of hundreds and thousands of people. And it'd be really good to do a little bit more for the community in terms of opening up and maybe telling people what it's all about.

And I think that's the kind of next step. So mine has been more kind of social media speaking to the younger generation, kind of my aid. It'd be good to kind of start talking to the older generation and reaching out to them. Obviously there's different ways to do that rather than through social media.

It's more about going to temples. going to these kinds of events and speaking openly about it, telling people what a bag is. What the side effects are, what the, um, what you need to do is go to the doctor and things like that. So I think that's kind of the next step that I'd really like to do because I think if I look at my parents and my dad especially, if I look at what he would do, if he had blood in his stool, he would just kind of ignore it and not do anything for ages.

They're kind of, whatever, let's just leave it, it'll go away, let's just have some paracetamol, some norephine or something, and it'll just go away. And they just wouldn't do anything for months and months and months. However, I think that's the kind of next, next step that I really want to do is try to start to talk to older generation and to tell them to open up about it really.

Hannah: There's definitely, uh, from that generation point of view, there's that, I'm the man, I'm the strong one point of view, I can't be seen to be weak, and it's awful really, is it, that illness is considered a weakness really, and it's not at all, it could happen to anybody at any age. So, I think that's great, because social media, like you say, doesn't resonate resonating more and more and more, but face to face is still absolutely one of the most ultimate ways to go.

Farish: Yeah, for sure, and I think, like, I'm one of these people, like, Oh, here's my bag, have a look at it, like, kind of, to show people exactly what it is, because, like, people just don't understand what a stoma bag is, which is, which is fine. Even I was never around somebody with a stoma bag, so I would not have had a clue before I had colitis.

So, it's just about awareness. letting people know what it's all about and taking the stigma away from having a bag. And I think it's changing and a lot more people are aware of it, which is really important for sure. And especially the older generation, um, they're starting to get to know it, especially people in my family.

I would say most of the people in my family know about it now. Because I've told them about it, they know the struggles I've been through, the surgeries I've been through, and the surgery that I will be going through again, so it's all about just awareness and opening up really.

Hannah: So when you say about going to the temple, is it something that you've spoken about within your community, within the temple?

Is it something that you've already spoken about and you just want to take a little bit wider or is it something that you're starting?

Farish: Yeah, so what I do, I help our temple in Watford. I look after a lot of the festivals. So a lot of people know me in the community already. It's one of the biggest temples on our biggest Festival day, which we have in August, we have over 80, 000 people who come to our festival over the weekend.

So it's a big festival. It's a big community. All the volunteers know me and things like that. So I am quite open about it. People know that I have a condition. A lot of the times I can't lift things when we're setting up or some of the years I haven't been there. Or I've been there a lot less because I've been in hospital or it's been around the surgery time.

It's about kind of just opening up and what we've started to do, especially in that temple in Watford, they've started to do maybe every three to six months, we have a committee of like health professionals. They'll come in, they'll invite all the community and they'll talk about certain problems. So I think They had one last month with more about heart related conditions.

So they'd have medical professions from this kind of area that have doctors, GPs and people walk around, do their blood pressure and talk about certain things. So hopefully eventually I'll speak to them and say, look, let's do one about. gastro and bowel diseases and things like that, because it'll be good to talk about that.

And people open up about it. I can talk about my condition and people understand that. I think the main thing is early intervention. So people really, because I was young, yes, I did kind of, once I started getting blood in my stool, I knew. There was something not quite right. And because I'm young, I'm one of these people like I'm going to the doctor.

So if the older generation did the same, then it would really be helpful. And they just think, ah, cause I'm 60, 70 years old. Why can't I go see a doctor anyways? It'll go after two or three months and they just leave it and it goes worse and worse. So it's all about early intervention for sure. And kind of awareness.

And if they understand, actually. Barry spoke about this, I should go see a doctor. So yeah, it would be really amazing if I can kind of start pushing and start talking to the, the older generation for sure.

Hannah: Is that something that's quite revolutionary, I suppose, within that particular area within Watford or is it something that, you know, goes on in other areas as well?

Farish: No, I think it's quite new and we're kind of a new, not a new dynamic temple, but kind of a farm community as well, so it's yoga and things like that, so we try and do different things compared to like, I'm originally from Leicester, so we have temples in Leicester, which are kind of more, Okay, youngsters do go, but it's more kind of the older generation that would go, they'll go into the daytime because they're retired and they'll mingle with other like minded people, the older generation, and they'll talk and gossip and have lunch together and things like that.

So if you go to them older kind of temples with the older generation, they're less likely to do anything like this because it's not the normal. So the younger kind of temples who are like more likely to do these medical things, the bigger festivals, um, have charity days. It just opens up a, uh, it's like a more like a community.

So people who live in the village as well come to the temple as well. And I think it's just a great initiative to people for people to reach out to each other. Like we said before, it's about connecting with like minded people. Sometimes you feel even though you shouldn't, but you sometimes you feel at ease when you've got.

and a connection with somebody. So if I'm, I'm a Leicester City fan, if I've got, I'm more likely I have a connection with more Leicester City fans or, or if I'm from the South Asian community, I've got, I've got similarities, or there's something to talk about, or I'm in the payments industry professionally, so I talk to more payments people.

So it's about kind of bringing your community together and opening out and talking about certain stigmas. And that's my aim, really. I speak to people, yeah, at my workplace. And a lot of people, because I haven't been at this work for, I've been here only six months, I've reached out to HR and I told them, look, I've got a stoma bag and I'd really like to tell people about it more at our workplace.

So they're starting to do an initiative where they'll talk about heart conditions, they'll do an interview with me and they'll open up about what I go through. And it'll just help. It's not a huge company, only 500 people, but at least if everybody knows what I'm going through and one of them has symptoms and they're more likely to reach out.

So it's just whatever I can do, whether it's at work, socially, at the temple, to make people aware about what I'm going through and the side effects and the symptoms, then if it helps one person, then it's a bonus.

Hannah: Absolutely. And I say you, you're in almost a privileged position because you kind of struggle so many.

taboo areas, almost it, the professional that doesn't want to be seen to be weak in things. It's the younger male who doesn't want to see to be not being able to be well enough. It's the South Asian community. So you encompass a lot of, I say those quiet areas where people don't want to discuss. intimate health care conditions.

So what a great position to have you in to be able to discuss with all those different, I say those different areas of people that don't like to have those discussions.

Farish: Yeah, for sure. Like you said, having, being South Asian, being a professional, being in a religious, Hindu religious group, in the younger kind of generation, being a male, these are all kind of areas that people look at me and think, Ah, he's going to be really strong.

He's a professional family man. There's nothing wrong with him. He likes football. He likes cricket. Um, he likes going on lots of holidays, but he looks all fine. You don't look behind me or in my brain or in my body and think, actually. There are kind of, I wouldn't say, I call them magic powers because which person can be talking to you or be eating and pooing at the same time, that's my magic power.

Hannah: And they say men can't multitask, I mean, come on.

Farish: I can definitely multitask, I'm talking to you, I'm pooing at the same time most probably and I don't know, and I'm thinking as well, so who can't do that, so that's my magic power.

Hannah: You are my superhero, Farish.

Farish: Exactly. Exactly. And if you tell the older generation in the South community, Asian community, actually I'm talking to you now, but I could be pooing, but it's kind of explaining to people the whole concept of it.

Oh, I haven't got large bowels. I've got no large intestine. They're like, wow. Okay. That's amazing. I go, yeah. And I'm still alive. Do you know what I mean? So there, it's just really just about opening up, being honest with yourself. People do struggle in the world and it's getting harder and harder and people just.

Really don't like to open up. So kind of opening up and sometimes making a joke of it. Yeah, okay I do suffer I do get a lot of pains on a daily basis But if I laugh about it, if I make people laugh about it, they're like actually okay, it can't be that bad Well, okay, it is bad. It does go Mentally it can scar you and however, if we talk about it be open about it laugh about it.

It's a bag for life Yeah, it is my bag for life. So I never need to pay 5p or 10p Or whatever it is, I've got my own bag of life.

Hannah: Well, so much again, Farish. It's, it's really inspiring talking to you. You know, where we speak to people and you can really hear the passion that you want to make a difference.

You really, really can. So thank you so, so much for joining me again. I really, really appreciate it.

Farish: No, thank you, Hannah.

Hannah: Thank you for listening. To see more of the wide variety of education we offer, please visit coloplastprofessional.co.Uk. See you next time.

Narrator: Stoma and Continence Conversations is a Vibrant Sound Media production for Coloplast Professional.