Cervical Screening Awareness with Sam Renke and Dr Larisa Corda

Hosts Jennie and Emily from Enhance the UK interview guests Dr Larisa Corda, NHS OBGYN and This Morning's Women's Health and Fertility expert, and Samantha Renke, actress and disability campaigner about the challenges that disabled women face when accessing sexual health screening. 

Cervical screening can save lives so why are disabled women struggling to access this essential service?

Transcript

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Jennie Williams: 0:05

Welcome to Enhance the UK's Undressing Disability podcast where we strip back all things taboo on sex and disability. I am Jennie Williams, one of your hosts.

Emily Yates: 0:17

And Hi, I'm Emily Yates, and this episode in particular is really, really important to us. And it's about a lack of access to cervical screening, and other sexual health tests and checks as well. And it's a real issue that's happening now for many disabled people in particular, Jo's Trust released a report in 2019 surrounding these specific issues, and found that 63% of 335 disabled women that were surveyed have been unable to attend cervical screening due to their disability. 88% of those women found attending appointments more difficult because of their impairments, and 49% of them said that they've chosen not to attend cervical screening appointments, due to previous bad experiences, or worries about what other people might think of them. With cervical cancer claiming two lives and changing a further nine lives through diagnosis every single day. This is a shocking and saddening statistic that must change.

Jennie Williams: 1:22

So I want to welcome and thank our guests. So first of all, we've got Dr. Larissa Corda who is an obstetrician, gynaecologist and fertility specialist that you may well have seen the likes of This morning and ITV News. And we've got Samantha Renke, who is an old friend of ours. Hi, Sam of enhance the UK, who is an actress, a presenter and a disability activist who is no stranger to the TV screens having appeared on Loose Women and Jeremy Vine amongst a few other things. So thank you so much for joining us, this is quite a serious subject. But in the in the light of Enhance UK like we the way we like to do things, try and bring a little bit of laughter to this as well, a little bit of joy. So, erm, Dr. Larissa, can we start with you? If that's okay, I'm just ready to start off with the basics. So some of our listeners might never have had a smear test before or know much about the process. Cervical screening, what is it? What does it involve? And why is it so important?

Dr Larissa: 2:29

Well, first of all, I want to say how grateful I am that we having this conversation in the first place because it is something that is so needed, especially in the current climate when we know that the rate of uptake of cervical testing is at an all time low. So it's never really been this low for 20 years. And there's several factors contributing to that, which we'll get onto. But in terms of your first question, what does it involve? Well, basically, a smear is a test that is currently done at a GP surgery, it can be done elsewhere as well, but mainly with the GPS. And what it involves is actually looking for precancerous cells. So the whole point behind it is to try and detect something that might go on and become cancer. So it's really trying to catch it in its earliest stages, so that something can be done about it. We know that it's really, really effective. That's why it's being rolled out. Because for a test, a screening test to be rolled out, it has to meet lots of very specific criteria. And that's what this test has done. So we know it can actually really help to save lives. But the problem is, is that lots and lots of women out there, are just not attending their screening appointments. So out of all of the eligible women in the UK, only about 70% will go and attend their smear test on time. So with regards to reasons why, it could be a combination of things, such as feeling a bit too embarrassed to have anyone look down below, to use a speculum, there might be a perception that it's a very painful procedure, something that can't be tolerated. There's also the fact that lots of women when they first do go and see someone may not necessarily have the best experience. And as a result of that, they may be really put off going again, or it's not well explained to them in terms of what's going to happen and what's going to get done. They might find it incredibly intrusive, because at the end of the day, you know, for a young woman who's 25 to go and have something like this done, she may never ever have gone to, you know, to have an examination down there. And so that can be quite intimidating, quite bewildering. And I think there's lots and lots of problems that we need to address which I'm sure we're going to talk about. But you know, the fact that we're talking about specifically amongst the disability community is really important because we know that women who live with disabilities, whether they are disabilities that we can see, or they are disabilities that are hidden from us do not, or some of them belong to a group where the rate of uptake is even lower. So they match on the same scale as ethnic minority groups where we know there's a lot more stigma regarding these tests. But But yes, lots and lots of researchers suggesting that actually, if you live with a disability, you are far less likely to go and seek treatment, or even the test itself. In actual fact, taking that even further studies have also shown that women developing cancer and yes, that does include cervical cancer tend to exist in more repeats and stigmatise minority groups such as the disabled community. So we know that if this is left neglected, and women don't go and get their pap smear, they are far likelier to go on and develop cancer as well. So it's really worrying.

Emily Yates: 5:52

Yeah, thank you, doctor. Larissa. I've learned a lot from that as well. And, Sam, you've got experience with this both personally and professionally, don't you? And we know that you support Jo's Trust and you're aware of their campaign and everything that they're doing. But what's your personal experience of this like? Have you encountered any accessibility issues when it comes to health checks in general, not necessarily just cervical screening? And is there anything that you'd like to share as a disabled woman regarding this?

Sam Renke: 6:22

Thanks for having me any, any opportunity I get to talk about my vagina, I always welcome!

Jennie Williams: 6:28

To the gang Sam, what can I say?

Sam Renke: 6:30

Me? You know me! And But yeah, I mean, I've been I've been kind of championing this for quite a number of years only because, you know, the barriers that I face came as a real shock to me, and I just thought Really, is this actually happening? Am I am I actually experiencing this? Am I alone in this happening? You know, we get isolated. And as we know, you know, those who, you know, are part of the disability community, we all know that we all share very common experiences. When we look at systemic ableism and the physical and attitudinal barriers we face daily. And I think that's what I, in essence, that's what I say. I mean, even looking back at, you know, my school years, when we did sex education, I mean, sex education, I'm 34 now, so you can imagine back in the day, erm grandma that I am, and, you know, sex education was really at a very basic level. And I just remember being absolutely ignored in class, completely ignored. You know, even even kids would say to me, like really, really, really harsh things. But if you had sex, I'm only 3 foot 9, if you had sex, the penis will come up through your mouth, you know, and that really haunted me. And that actually scared me for a very long time, even engaging in a sexual relationship, because I just thought, oh my god, maybe I can't. Someone said to me, you know, if you, if you have kissed someone, you might break your jaw, because you've got brittle bone. So I think not even being able to openly talk about sexual health really stopped me from accessing, you know, the services, when probably I should I should have done. Then I moved to London, and went a bit crazy, you know, started having many, many more sexual partners in my world, plenty, which was, you know, fantastic, very liberating. And but then, you know, that came that I had to, you know, kind of look after myself. And I would find that even just finding the GP locally, to me that was wheelchair accessible, was quite tricky. Now, I'm someone that can't take public transport independently, I don't drive. And so I had to, you know, pay premium of taking taxis to go to a GP surgery that would cater for, for my access needs. You know, it wasn't just, oh, I can just go to my local GP, I might have travelled much further, just so that I can do that independently. You know, I, I, I had a really bad experience quite recently. I had, I got HPV which is very common condition. And I have to go for, you I always get this wrong, colposcopy, Is that right? Yeah.

Dr Larissa: 9:19

Yeah. Exactly. Right.

Sam Renke: 9:25

And, and that has to be that had to be conducted in, in a hospital, not the GP. And I, you know, I arrived with my PA, I always prefer to take a PA with me, because I know I'm not going to be able to hop on the bed. I'm going to have to be lifted and there's not going to be a hoist available. So I took my PA, I got I got put into one of them rooms. It's already a little bit awkward, you know, sat in the waiting room, everyone knows why everyone's there. Kind of deadly silent. And then I went in there was at least four nurses and they had the the bed and it was super high up and it had stirrups, Yeah, is that it? You know when you deliver baby?

Dr Larissa: 10:05

Yeah

Sam Renke: 10:06

Now I've got a non union fracture, so I was like hell to the No, that's not gonna happen, you know that physically, I mean, my legs won't even reach anyway, and my, you know, my my leg is in two pieces effectively. So even just that, you know, my anxiety levels went through the roof. And that was before anyone even looked at my, you know, Lady garden, you know, to me. It's even even that, and then you could see that this stuff. And I hate, you know, I don't mean any disrespect, what I could see them already getting rather frustrated and flustered or not, not too sure what to do. And I think that is a lot to put on a patient when they're already feeling a little bit anxious. And they're already feeling maybe embarrassed because it's not, you know, we can say what we like having some strangers fiddling around downstairs, it isn't always going to be the nicest experience, you know. Let's, let's be honest, there, you know, and then finally, when we got me in a position, they only had erm, erm two specs? Specs?

Dr Larissa: 11:11

Yeah, yeah,

Sam Renke: 11:13

They only had two speculum and a was a little bit like, I was Goldilocks and the Three Bears, one of them was too small. And then the other one was too big. And now I'm not talking about my sexual, you know, escapades, but, you know, there's a very difference between being intimate with a man and having lubrication and being relaxed. And then having, you know, something, a foreign object inserted into you. So none of these things work and ask them nearly 20 minutes of fiddling around there that I mean, I've broken 200 bones in my life, and it just became too painful for me and I said, We gotta call this, call it a day and I kind of got pushed away. And I had to wait six months for another appointment for a specialist to come and, to come and you know, do the procedure on me and, and the irony was the way we ended up doing it, I just laid on my side. I just laid on my side. I didn't do it the conventional way with your legs, akimbo. I turned on my side, inserted everything you know that they needed to insert, and it was done within seconds. And I just think, you know, all that fuss and all that heartache, and then me waiting, six months. And to be honest, I was petrified. I mean, I was literally petrified. All these things kept coming up on TV because I think it was like cervical Awareness Month, you know, cervical cancer awareness month and I'm going oh my god, I don't even know, you know, my period started getting irregular, probably from the stress. Ironically. You know, the thing is, it's about opening up conversations, and I always feel very infantilized as a woman with a disability. You know, we're not expected to be sexually active, we're not expected to be women at all. I mean, that's one of the reasons I got my bellybutton pierced when I was 14, just because I was like, I am a woman, you know, look at me look at my woman's body. And I think this is what we really need to get to the bottom of that, you know. Unfortunately, that not everyone's amazing, like Larissa You know, like you said, Nobody gets, yeah but do you know what I mean? like you, you engage with people, in you, you put your hands up and go, I don't know, this is what I'm here to unlearn and relearn, you know, and also externally, a lot of medical professionals and I've, you know, been around a lot of them in my life, aren't always willing to let that ego go and aren't always willing to say, Yes, I am completely ablest, in my, in my take on, you know, I've been to appointments where doctors haven't even looked at me, they've talked to my PA. They've talked to my PA, you know. I've had other people just really go basic, you know, a lot of people go for appointments, and even though the GP is aware that they are a wheelchair user, they won't keep the door open. So people are struggling to get in, you know, very, very, very, very basic what that can mean for that individual, the difference between feel comfortable feeling confident and competent, and returning, you know, because that's something that miniscule and not being seen as a person and valued as a person can absolutely knock you down. You know, and that's, and that's dangerous when you're talking about cervical cancer, because time, like any cancer is of the essence. So I think, I think we need to we need to look right at the heart of, of how we educate, you know, and train staff and it's about communicating. It's also about understanding that not every disability looks like myself, a wheelchair user. You know, we've got people who are neurodiverse we've got, you know, people with learning disabilities, we've got people with, you know .... I hated it, or be called the disability community in that respect, because our needs are so, so different. I might be a wheelchair user, but I, I have limited mobility in my arms, you know. So I think we just need to take everyone as an individual and ask them, what are your needs? And how can I help? And that can be done before even entering a hospital or a GP practice that can be done on the phone. And I think that's what we're missing. That doesn't take and that doesn't cost money that doesn't take too much time. I've rambled away haven't I? And someone else can reeally come in here now.

Dr Larissa: 15:31

It's amazing. It's amazing. And I just want to if it's okay to ensure that you make so many amazing points that I'm actually which is why you're such a great ambassador for this. But I think you know, one of the last points that you made about the fact that disabilities can be hidden, or they can be you know, things that we don't necessarily see or appreciate. I think that's so right. And that really, is something we have to change because currently in our medical practice, it isn't standard necessarily to ask people about their disabilities. You know, if we see someone come into the room in a wheelchair, we presume that they are disabled. But there may be plenty of people who don't do that, who carry with them lots of other disabilities that are hidden from you. But yet we don't ask. And that should be one of the first things that we change just to ask people. Is there something that you suffer from? Is there something that would help you in terms of having this examination and dealing with that, at the start, and as Sam says back that can be over a phonecall. It doesn't necessarily even need to be during the consultation. And the other point that you I mean, you've made so many brilliant points, but with regards to the HPV and the fact that we know that HPV is associated with cervical cancer that you know, even 99% of cervical cancers will develop as a result of long standing HPV. Now, that's not to say everyone with HPV will get it. In fact, most of us will have HPV because it's not necessarily just transmitted through sexual intercourse, it can occur through skin skin contact, as well. So most of us will be carriers of HPV, but the difference is that most of us will also clear it within a few months within a few years. But where it persists is where the danger lies. Now, there's often a misperception that you should only get your cervical smear done if you're sexually active. But that's absolutely not true. You have to have your cervical smear done, even if you're not because of the fact that HPV can be transmitted skin to skin through any form of sexual contact at all actually. And also the fact that there are some rarer cervical cancers that can occur where you know that that you may not necessarily be able to spot them at all, unless you have a smear. So it's really, really important that every woman is able to have access to this. And if you live with a disability, not only do you have real problems in terms of accessing treatment, so even getting to the smear test itself, and then all the problems that Sams talked about when you're actually in that room having the smear, the fact that there's no equipment, people aren't necessarily prepared for it, they're not sure what to do, they fumble around. But you know, there's also all of the issues that you face from a much younger age, as Sam has said, with people making very prejudiced remarks and having prejudiced views over your whole sexual well being and how sexual you are. And you know what, what your health will be like, as a result, I say all the time with fertility as well. But there's this presumption that if you're disabled, you won't want to have children. And that's completely not true, because many studies have actually shown the opposite. That whether you live with a disability or not, that drive to be a mother is just as much as just just as strong as anyone who doesn't have a disability. So we as a society are incredibly prejudiced. And one of the first things we need to do is actually address that and recognise that we have an issue, and that we need to start talking about this and stop being so prejudiced. And if anyone, you know, it is, I mean me and Sam have had lots of conversations behind the scenes about this, but I think, you know Sam will give anyone a run for their money if they trying to make any assumptions about her own sex life. You know, I think it's the fact that she has, you know, she's so outspoken about it, and the fact that she really does live life to her full potential as much as she can. It's just so fabulous to see and I think, you know, we need people like Sam to challenge these societal, you know, taboos and conventions and to kind of show people actually, even if you have disabilities, you can still live a most fulfilling and brilliant life. And, you know, we that includes the medical community where I think this lack of awareness does also exist.

Emily Yates: 19:37

A lot of what you said Sam really resonated with me and I mean, I won't go into too much detail but one of my recent smear tests, started with a bed that wasn't a height adjustable and ended with basically it taken a whole day for me to find a clinic that did have something that was adjustable and accessible for me and actually did end with me having to go on my side to do the test. And so I've had similar experiences to you with that. And and Dr. laryssa, I think what you said there is really, really powerful in the fact that we often shy away about asking people what their access requirements are, and how we can assist, whether they'd like assistance and how we can. And really, those three questions are so so easy to ask. There's no reason why we shouldn't be opening up that dialogue. So that's great. Thank you. And, Jennie, I know that you've also had you know, you've got a different impairment again, but you've also had issues, haven't you when it comes to access and communication as well?

Jennie Williams: 20:39

Yeah, well, I think it's really interesting, because we were talking about a lot about community and Sam, you said, community, it's, you know, I think we use that word, don't we just, you know, disabled community. But actually, how much of a community is it? Because it's a very fragmented because people have got so many different kinds of impairments. The one community that I think very much does exist is the Deaf community. And for me, I'm not profoundly deaf. I am a hearing aid user. So it's a completely different experience for me going in, somebody is down the other end, I can't lip read, you know, especially at the moment, masks. I'm not anti mask quite quite, you know, far from it. But masks are making me feel very, very vulnerable. And I don't use that word lightly about myself. And I very, a few days ago actually had to go see a gynaecologist, myself, and I was having to say, can you please take the mask off? But the problem is, I think that, you know, what you said, we talked about problems, okay, we know what the problems are, but like we talk about a lot with Enhance, what are the solutions? How can we make that better? And I think that is one of the key things from the off to everybody saying, what are your access needs, you know, just making that really comfortable for everybody. And so you can clearly say, these are my access needs, because we know our bodies better than anyone else, you know, really, we know what our access needs are better than anyone else. And I know my access needs a completely different to somebody with a physical, physical access needs. So yeah, I think the deaf community, it's really difficult because you haven't obviously got somebody a lot of the time most, most doctors aren't able to sign and be ourselves. So not only have you got that fear, and lack of understanding around what cervical screening is, you've got the lack of ability to be able to have that information then translated to you in your own language. So we certainly as a charity, we need to be doing a lot more to support the deaf community as well, you know, putting more information out there, it's, it's I mean, but I think even just having these conversations is a big deal. And like you said, Sam, you know, you're in your 30s. And I'm in my 40s. Now, certainly, when I had, you know, I can't even remember any sex education from school. It just didn't really can't really remember even existing, and the fact that we're having these conversations is a big deal. You know, and, and it's fantastic. But I mean, if you think in your head, because people get very scared don't they? They talk about access, they think, oh, that means ramps, we need to spend all this money to make, you know, to make our surgeries more accessible. Yes. Okay. To a certain extent, absolutely. But actually, really, Emily and Sam, even though you're hosting Emily, you know, you've got a physical disability. So, is attitude, do you think one of the biggest barriers? And and to you as well, just to say, you know, that fear that it's stopping people going? On top of having, you know, a negative attitude when you've got thatbarrier?

Dr Larissa: 23:48

Yeah, you know, 100% Yes, there's a problem in our attitudes and in our perception of the disabled community, because, you know, for starters, talking about sex, there seems to be this myth that actually, if you are disabled, especially if you have a physical disability that might affect the lower part of your body to that you can't have sex. And that's completely wrong in so many cases, again, the misperception that you can't conceive, that you can't necessarily give birth. And yes, you know, that there may be problems that, you know, we need to interject with medically for some people, but the majority of people are able to live very fulfilling sex lives, are able to conceive naturally, and they're also able to give birth naturally. So we have to start dispelling these myths for starters. And with regards to the accessibility accessibility issue that you mentioned, yes, some of this will be about, you know, extra equipment that you need to get such as ramps, or, you know, potentially having an interpreter or someone who can sign. Use sign language, you know, all these different things. Yes, they are important, but I think we actually need to be looking at something even more basic, and that's, you know, how can we adjust For example, the smear test to make it more accessible to people to bring it home to them when they can't get to us, or if we don't have that equipment. So we know for a fact that actually there are tests being rolled out, which involves self examination. So it involves you taking a smear, very simple smear at home that you can do in the comfort of your bedroom or your bathroom or wherever. And that will check for HPV. And as I mentioned before, because HPV, is so closely associated with cervical cancer, you'll only get called to see the doctor if that test is positive. If it's negative, then you can rest easy and repeat that in the next three years or five years depending on what your age is. So I when I was younger, I was actually involved in some research that looked at rolling out this test to people in their homes and buying something from Boots or Superdrug, that would basically involve you taking the smear and we know that this research is ongoing, we're hopeful that actually we might have something ready very soon. Because we know that if something like this was provided for people, especially those who are disabled, who've got real, physical as well as mental barriers towards coming in, and seeing the doctor, I think it could potentially revolutionise the uptake of Cervical smear screaming, and as you mentioned, both you and Sam have said that you needed to take have your smear test taken in the side position. And that's absolutely fine. You know, why was it that you weren't offered that in the first place, perhaps, you know, sometimes, it just seems so obvious, but we don't do it. And we don't think about how we could potentially help someone. And, you know, it just involves us thinking a little bit laterally about all of these issues, and really trying to sort of remove the real barriers that are there, whether they're mental, whether they're psychological, whether they're emotional, whether they're physical, and really trying to encourage people to to have this kind of test, which is so so important, which could save their lives. But which could be done without necessarily having to go and see a doctor, if they do have to go and see a doctor, then making that as comfortable as possible for them.

Jennie Williams: 27:03

That's really interesting. Because that I mean, that would be such a game changer. We actually weren't

working with Sh: 27:08

24. And we were given 300 free STI kits, codes to give out online. And I must admit, I thought, I don't think I don't know if this is gonna work. Yes, we have followers. But a lot of people are quite silent to follow us because they're scared still about talking about sex on social media absolutely understand that. Are we going to get rid of these kits? Well, within weeks, 300 went and we ran out. We were genuinely really quite surprised by that, but also really pleased that there are people watching what you know, watching these conversations ready and willing and wanting to do something about it. But they're actually and I think this is a lot of the problem. A lot of the time medical professionals say, but we don't really hear anyone say that there's an issue, or they're not coming to us, and they're not talking about it. So how do we know? And it's that thing again, it's that embarrassment, it's that fear. But just because people aren't speaking about it doesn't mean they're not reading about it, they're not listening and then waiting for something like this to happen. And then it would get, I think, very quickly snapped up, especially in the likes of care homes, it would make a big difference.

Dr Larissa: 28:21

Yeah, absolutely, as I say, can be a real game changer. And you know, lots of studies indicate that as well. Plus the fact you know, I think we also have to take into account that women with disabilities really face a couple of double whammies here that are against them to the fact that they are women. So we know there's already gender bias within medicine, that's indisputable. We know that when it comes to presenting to the doctor, women are far less likely to do it than men. And we know that when they do present the doctor, they're far less likely to be taken as seriously as they are. We're not quite sure why that is. But that's been around for ages, it's a cultural thing. It exists in ma y of our cultures, not just in t e UK. Now, the fact that you' e got a disability, you've al o got issues, not just wi h access, but you've got issu s with employment. Most disabl d people also tend to be part f the most, you know, deprived r lower socio economic groups a d classes. So again, they have a l of the stigma that goes wi h that, and the lack of educati n that goes with that the re l barriers to education that o with that are barriers o employment. So when you tie a l of that together, you know, it s it's almost an impossib e situation, where you have all f these things which are preven ing you from being able to ge to the doctor in the first pl ce, but then also seek the sup ort and treatment that you m ght need and to be taken seriou ly. And to have all of your n eds addressed. It's, it's rea ly, really huge. And I'm jus so glad we're having his conversation because I hone tly believe that a huge par of change will start from here and from having these discuss ons and people going, Oh my gos, I really didn't realise and ike you said with a potentia to have these smear tests at h me, most people don't know that hat is something that we're ven looking at or exploring hem that hopefully will come nto effect in the next few ye rs. Yeah, so.

Emily Yates: 30:12

And Sam, just a question to you, do you have any words of wisdom, if you like for a disabled person that perhaps hasn't had a smear test yet hasn't gone and got tested for STIs, whatever it may be? Have You got any words of wisdom about facing that fear about the correct questions to ask or communication to have based on your own experiences?

Sam Renke: 30:38

Yeah. I mean, just before I answer your question, I like to say that I am most of working with the University of Kiel, and which is looking at a research project to about exactly what we're talking about today. And the, the at home kit that Larissa was talking about combing through that research. So we are Fingers crossed, that that goes goes ahead, and we can make further progression in going forward. Another point that I, you know, some of the other barriers that, for me, I'm very mindful of as, for younger, younger people with disabilities, you know, having these very codependent relationships, either with parents or carents or personal assistants, you know, because I've, you know, I've worked with a lot of disabled youth in the past, and, you know, again, I can sometimes see parents or PAs, being very, very kind of overbearing, and, you know, I've taken the lead, and I think that can be a really, really difficult barrier, you know, to overcome when you want to be independent. And obviously, you know, to answer your question, you know, how do you do that, when you want to go for, you know, a smear test, or you want to go to, you know, to go and get sexual sexual health provision, you know, and you rely on other people to get you there that you might not actually have had that conversation? Where do I take it can be really tricky, you know, how do you how do you tell your parents that you're sexually active? And also, can you please drop me off to go get to go and get the pill? Or how do you know, when you go to pick me up some condoms when they don't even know that you're having sex, you know, but they are your full time carer. So I think that's another, you know, be a real challenge. And I was in a codependent relationship with my own mother, I know, it can be very difficult, I think what you need to do, you know, those nice things on your own, pick someone that you know, a friend, a family member, that, that know, you, like knows the real you that you feel comfortable doing. Soeven with that person set boundaries. So I took a mate of mine to a smear test. And instead of staying at my head, she kind of like stayed at the bottom of the bed. And I was like, Oh my goodness, not only have I got the GP fiddling around, now, I've got one of my best mates, kind of seeing everything about, about you know, being comfortable, you know, pick that person pick that mate to go with anyone, I think it's quite nice to to take someone to go grab a coffee beforehand, or, you know, set the boundaries, do you want them in the room with you? Or do you just want the there as a safety measure? You know? If they're in the room with you, or they got away at the other end of the, you know, the room? Or are you okay for them to be right next to you and helping you out, you know, physically and being being by yourself. So, you know, I think I think boundaries is the key. And also, you know, we've mentioned a lot about what institutions can do, what doctors can do, what medical professionals can do, but we want to take a bit of ownership ourselves, you know. I, I know it sounds very easy for me to say because I think I've, I was born with this very innate sense of confidence. And I'm, you know, I'm an I'm a northerner, Emily, you'll know what this is about, you know, we speak our mind and we can be quite, you know, like, yes, this is what I want, and this is what I need. And I'm very blessed to have that voice. But not everyone is the same. However, you know, if you don't voice your needs and your access needs and if you don't voice your concerns with your medical professional, even if there is an awkwardness, maybe they are male and you're not comfortable with that. I think you still have your own responsibility to you know, just for that moment, get that courage and be like, Okay, this is actually what I need. And don't think that you're being a burden. Don't think that you're being unreasonable. You know, you're, you're, you're actually safeguarding your, your own health. So it helps everybody. At the end of day I like to use this word, my new kind of buzz word record, targeting universalism. That basically means that policies that are normally on the universal level, but then they just think that one one shoe fits all. Yeah, so We've got we've got cervical smears in place, yeah, great. Well, everyone's the same, you know. Targeting universalism basically means that you do universal policies, which benefit everyone is safe, but you also recognise that there are minority groups, and that they need to also be taken into account. And that by doing that, that actually benefits the wider society. So, you know, having more people being able to access the cervical screening, you know, in sexual health will actually benefit the NHS, in the long run. You know, you'll reduce the amount of people who are contracting the, the, the cat horrible condition tenses, you know, and then that will eventually, you know, help, you know, kind of, when we're looking at the overall well being of the welfare of the, of the National Health. So, you know, if you think about it, like in maintenance, don't feel like a minority, when you're going through things don't feel like you're, again being a burden, or you're asking too much. At the end of the day, everyone is after the same goal. Everyone wants, you know, for you to be fit and healthy. And, and also, what else? Well, it's what I say. And it's difficult, isn't it? I think, obviously engaging with people who have been through it, or following people on social media, that like your organisation, you know, which is fabulous, you know, and just kind of, you know, if you don't feel comfortable talking to anyone engage with people online. We always say that online, you know, the anonymity of the internet is, is, you know, can be a negative thing. But actually, for situations like this, it can actually be quite a positive thing that you can feel comfortable and confident to, you know, ask the questions in quite a safe, safe environment. So yeah, so just take a bit of, take a bit of ownership, leadership yourself, you know. And, and also, you know, what, I'm not gonna lie, sometimes it just hurst having a cervical examination. And this is what sometimes frustrates me when I see things on television, you know, I see a lot of talk around around it, and everyone's like, Oh, it's fine, it really quick and easy, but actually, when you've got, you know, additional need, and it doesn't always go so routinely. So I just think, you know, just bear that in mind books. For me. We, a lot of a lot of us have been through so much in our lives, that there is nothing in the great scheme of things. It might not be pleasant, it might be a bit uncomfortable. What actually, you know, what's that phrase? Life It's tough, darling, but so are you! Might think that, you know, people within the disability community, like own that, that that saying completely. So smear testing is not going to get that done. Next, such

Jennie Williams: 37:47

A brilliant answer. But did you hear one thing I was taking note of as well, Emily, for you and I apparently we're meant to set boundaries with friendship. I think we didn't get that memo did we? I think we've seen far too much of each other over the years, I have to say,

Dr Larissa: 38:02

It's alright, you know, what, just to add to that I've had men who've wanted to look down the actual speculum, and I've been doing it and who've been absolutely fascinated. They've had their doors rock open, they've gone Oh, my God, that's actually really interesting. They never underestimate just how interested someone might actually be to see what's going on.

Jennie Williams: 38:21

Well, it's quite interesting. I as I said, I'm going to bare all but I'm having a few problems at the moment, and I'll be having to go back to the doctor and and she said, What is this what your vagina normally looks like the colouring slightly different, Ithink I've gotta be honest, I've never really looked at my own vagina. Yeah, I have never looked at my own vagina so much as I have in the last few weeks for the mirror, and on my phone and in bed. And I'm like, wow, who are you?

Dr Larissa: 38:47

doing. And I remember I did, I did a piece for these women ages ago with the, when the artist who created the Great Wall of vagina came on, and he was demonstrating, you know, just 100 different variations. And it was so very, very different. But the whole point of it was that actually, every single one of them is normal, you know, and it's just a variation of normal and but most of us don't really take the time to look down today, we don't really want to do that we consider it really, really embarrassing, and we don't really want to talk about it. And whereas, you know, I think the opposite is true for men isn't that they're quite often comparing themselves down below when and, and looking down there. So you know, it's interesting

Jennie Williams: 39:31

Not only that i've been looking I've got something called Lycan sclerosis. I've just been diagnosed so well. Not only that, I've been looking at lots of other people's vaginas, trying to find out what I've got. And I was like, exactly that. I never looked at so many other people's vagina. Wow. It's a whole education at 41 years old. So my, my last question really is to you Dr Larissa. Sam, that was brilliant. And I don't think we can even try and add anything, we don't need to, is really we've mentioned a few times talking about training and looking To with it, you know, the medical professional, obviously doctors are very busy. What would that look like to you if you had a magic wand? Or we could create some kind of training or some support for, for doctors, etc? How could we do that?

Dr Larissa: 40:15

But it all starts with what we've all been saying, which is increasing awareness. And making people realise that this is an issue, this is a problem. So trying to incorporate that into our training and trying to perhaps, you know, have a section that is all about how to, you know, deal and help people who come to you with disabilities, and what provisions we can make. And you know, how we can best help to look after them. So I think some of that will start with and should start with us, first of all, asking, you know, is there something that you feel would be preclusive, to you having this examination? Or is there an issue that you struggle with, and just bringing that subject up, it should just become routine to ask people, because I bet you I think, would probably be really surprised. And the answers would get, you know, in terms of, as we've mentioned before some of these disabilities being hidden from you, and also not necessarily realising. And I think it's also really important to try and tackle some of the more difficult subjects because Sams mentioned though, you know, even if you have a carer, it's quite difficult to necessarily discuss some of these more intimate issues with a carer. So things like your sex life, things like your periods, even you know, someone might be suffering from a really heavy period, or really painful periods. But just consider it inappropriate to tell someone, even their carers, so we think, but for the person, but for someone who's disabled, to come to see the doctor, I think that should be recognised as a really big deal in itself. And therefore that encounter, should try to also go into issues like that and try and recognise any problems. So asking the question of, you know, are there any particular problems you're facing at home and me as a gynaecologist that would obviously involve me asking about periods and things like that. And again, I think we might be surprised with some of the answers that we get. So that medical encounter is really, really crucial. And it might be the only time in a while that that person comes to see you. And therefore it's just vital that we try and encourage people to open up as much as they can about any issues that they might be facing even the more intimate issues because that's part of our job as doctors really, and especially as gynaecologists. And I would say, you know, one thing I want to add is with COVID-19. Now, as well, you know, you spoken about the issue with the masks and how difficult it might be for someone who, you know, isn't able to lip read someone when they're wearing masks, I mean, I I struggled when I'm working to hear people necessarily over the mask and with visors on. And you know, so So for people who have disabilities that prevent them from being able to interpret any of that, my goodness, it must be horrendous, and really, really hard. Plus the fact that access to treatments, and access to things like your smear tests are going to be made even worse, right? Because we know, we have 8 million people currently on the NHS waiting lists just waiting for routine appointments, routine procedures. And I suspect that sadly, the disabled community is going to become some of the most marginalised after this pandemic, and during this pandemic, because of that, because of the barriers to access, because of the fact that you know, even their carers that they may have around to help them or we may not be able to be around, plus the fact that their risk of actually getting COVID-19 might even be higher because of the areas that they live in. And because of you know, if they need a caregiver, that's there, the fact that they might get it from that carer. So there's, there's loads of issues that we need to be looking at. But I think it all begins with increasing awareness, increasing our need and want to help. And you know, considering the fact that actually any one of us in our lifetimes could become disabled. This could affect any one of us, right? Brothers, sisters, mothers, fathers, you know, cousins or friends. So it's really, really important that we take the time and we have that compassion, to sort of put ourselves in the shoes of someone who's finding all of this incredibly intimidating, incredibly difficult Add to that the strain of COVID. And, you know, understanding just how hard that is for someone. So it's small changes at a time I you know, it's very difficult to to necessarily say everything will change all at once. But I think talking and hearing from people like Sam, who talk very honestly about some of the barriers that they faced and some of the problems and starting education really early, you know, in young people at school, and talking to them about things like this, and having, you know, specialised sex education, I think is also really, really important. So, there's a whole mix of things I've added to that hope that answered the question, but it's, it's, you know, it's doing all of these things in tandem, and waiting for it to start making a difference which I believe it really, really can and podcasts like this are going to be instrumental in that in the work that you're doing as a charity, too.

Jennie Williams: 45:06

Thank you. No, that's brilliant. And I mean, I'd like to say that I was feeling quite proud when you were talking because I was thinking, well, that's a lot of the work that we are doing as a charity. And you know, and, again, it started the journey. And I think that having these kind of conversations is just so important. And getting the getting the message out there is so important. So I know we could carry on probably talking about this for another hour, but I can't thank you both enough for coming on and taking time out. And I know you're both really busy people. So thank you. And just a note to people who are listening on if you want to go on to our website, which is www.enhancetheuk.org and the the campaign undressing disability, we've created a relatively new hub, which we call this sexy little sibling to LinkedIn. So people can go on create their profile, and it's for doctors and healthcare professionals and disabled people, saying that, like disabled people aren't healthcare professionals, you can have an amalgamation of both for people to go on and really connect and, and to carry on having these conversations because people aren't just having these conversations in this country, and having these conversations all the way around the world. And there is no, there's no kind of sense of community when it comes to that. So it's some something that our listeners could go in, fill in a profile and start talking and having these conversations, some of the forums. So thank you both, again, really appreciate it. And this is the start of our journey early, isn't it pushing, pushing this campaign. So hopefully, we'll be chatting to you again soon

Emily Yates: 46:41

Been a real joy to listen to you both. And thank you so much for sharing your wisdom and expertise, very much appreciated.

Dr Larissa: 46:49

Welcome, and thank you for everything you're doing. It's fantastic. And, you know, I'm just so glad I could make a small contribution to this. So thank you for having me.

Jennie Williams: 46:58

Thank you very much.

Emily Yates: 47:00

Thanks for listening. For more information or to have a chat with us. Please visit enhancetheuk.org From there you can also sign up to our Undressing Disability hub, a platform for professionals to connect and collaborate in the arena of sex and disability.