Naman Julka-Anderson (00:01.293)
This is episode 190, which is part of the Equity, Diversity and Inclusion series, where we'll be hearing from our guest Francesca Fiennes on her research on LGBTQ plus South East London breast screening research project. Hi Francesca, how are you?

Francesca Fiennes (00:16.152)
Hi, get thank you.

Naman Julka-Anderson (00:19.139)
Great to have you on. Would you mind just starting by telling us a bit about yourself and your career background, please?

Francesca Fiennes (00:25.454)
Yes, so my name is Francesca. I'm a health promotion specialist. So I've been working in health promotion for, gosh, nearly six years now. I worked in the charity sector, the NHS where I did this project, and then now I work in a local authority and public health team. So I worked across sex education, breast cancer screening, and children and young people. And when I was working breast screening, that's when I got the opportunity to do this research. So yeah, thank you so much for having me.

Naman Julka-Anderson (00:54.039)
What does health promotion mean to you?

Francesca Fiennes (00:56.814)
That's a great question. I think often people who work in health promotion say it's more of an art than a science. So sometimes we don't necessarily get to see massive increases in numbers or data. But for me personally, it's more about making a difference for a few that might compound to a lot.

a lot more people helping more people but I always try and think about, I guess there's two strands, so in public health we'll often talk about the Rose Hypothesis which is essentially trying to make a big number of people slightly healthier or making, on the flip side maybe you've got more targeted interventions where we can improve the health of some people who might be at higher needs. So when I was working in breast screening it was quite interesting because screening is obviously for the general population but when we're looking at things like health equity it's really

thinking about who are those smaller groups who aren't being invited or who aren't able to access screening. So I guess it means lots of things, but definitely try and make it more of an art and try and reach people in creative ways.

Jo McNamara Rad Chat Host (02:04.095)
intrigued. What creative ways can you do health promotion to lots of different populations of people?

Francesca Fiennes (02:12.405)
Yeah, great question. I mean, obviously we're seeing a lot of increasingly stuff online. So one of the things I did in my role was I did a big social, kind of like a social media project with the hostiles working out. We did a breast screening video. So we interviewed people who'd been diagnosed through screening. Sometimes it also might be, you know, standing in the rain in Peckham Square with my colleagues from Southern Council trying to just chat to people as they walk past. My last role I went to...

Domino's Club, went to kind of local community festivals. So sometimes it will be, I actually used to use a lot of models of breasts to get people to kind of catch their eye, then see if they'll come over. And then obviously in this work as well, trying to think innovatively about different groups we can partner with. Because I think sometimes in the NHS, don't, we're not necessarily part of every community or we don't have, we might not be the best people to lead things. So I think a lot of trying to build relationships with people,

being open to kind of knowledge exchange, know taking someone for coffee goes a long way. So yeah it can be a big range of I guess community based work, online based work and then obviously research as well because sometimes there might be a gap so that was the case with this research there was a bit of a gap about so I had to kind of essentially prove the issue so that we could bring a bit more attention to it in the area.

Naman Julka-Anderson (03:41.559)
You talked about the issue. What is the issue? How did you kind of realize it?

Francesca Fiennes (03:44.846)
Yeah

Great question. So when I was working in King's, so King's is obviously based in Southwark, so that's South East London, massive hospital, big staff group serving generally six boroughs of London, but depending on the specialty, could be people from all across South London. And I was looking at our uptake, which after COVID, all of the breast screening services in London essentially got funding from the NHS to increase health promotion, because after COVID, all of the screening rates were down.

and I was working with the South East London Cancer Alliance who'd already done quite a lot of work, for example with the African and Caribbean community, doing some work with know primary care, things like that, there had already been some work done.

Originally I started doing a health equity audit looking at just who is the population in South London, who's not coming to screening. So I looked at our national best screening data and I also looked at some census data. And so it was a bit of process of elimination of what works been done already and trying to map, essentially trying to be effective. Because I think again, sometimes we can come in and just go, okay, this one group is not coming, let's work with maybe the biggest number of people who aren't coming. And then I was looking at in Southeast London,

Lambeth is one of the most LGBTQ boroughs in London. It depends if you're looking at population size in terms of pure number or percentage of that borough's population. But Lambeth, Southwark, Lewisham have some of the percentages of people who identify as either lesbian, gay, bisexual, trans or queer or obviously...

Francesca Fiennes (05:26.271)
intersex and asexual as well, but a lot of the data was suggesting that there's a big population in our area. And then I started to look into what are the health inequalities for LGBTQ people in general. So not just thinking about breast screening. And then when I started looking at breast screening, I realized that as it stands at the moment, that people who have changed their marker from female to male won't actually get invited.

to breast screening based on the current system. And obviously being one of the areas with the biggest community, I kind of started reaching out to people who might have some answers. So, you know, what happens if people call us and they want an appointment.

How are people being signposted? And then was lucky enough to meet Stuart who works at Outpatients. I met them through the Cancer Alliance because they had done some inclusion work with the Cancer Alliance and I sort of started asking them, you know, what are any teams across the country doing? You know, is there any policy changes? And it turned out there's only one as it stands hospital in the whole of the UK. So that's why I'm definitely going to send the article they wrote because that was they were kind of my inspiration. And they also did a health

and they realised quite a few different parts of their service could be improved. That's in Maidstone, Maidstone doesn't have a particular, which is in Kent, doesn't have a particularly higher than average LGBTQ population. So I kind of felt that if they were doing that, you know, was there something that I could do locally? Obviously you can't.

make these changes overnight, you can't automatically, I hadn't worked in the NHS before, I kind of thought, know, surely we can just make a pathway and invite people and that's that. And obviously, yeah, it takes a lot more planning. And one of the things that there was a big gap on is that there hadn't been in London, and really across the whole country, bar this one team, there hadn't been any research done.

Francesca Fiennes (07:20.462)
on LGBTQ people's experience of breast screening. So it's done in cervical screening. Wasn't much on breast. There is globally. So if you do read the report, I'd really recommend, because I collaborated with lot of, not just colleagues, but people from the community, people from outside of King's. It was a massive labour of love. took a long time to write up. Not so much to do the research, but a long time to write up, make sure everything was accurate, and also representing the trust they worked for and things like that, because I

think it can be a bit of a tough line to kind of look at health inequality and say we're not actually doing what we could be doing, here's how we could improve without coming across.

critical at the same time advocating for the patients who are unfortunately missing out on screening and then if people are coming, know, what experiences are they having? So there were quite a few question marks I wanted to answer to see, yeah, find out how many people we were missing and then what people's experience, you know, because we didn't know if people were coming and they were actually having a right experience and possibly the health inequalities were in healthcare in general, you know, was there something specifically about breast screening? Obviously in the name breast screening, some people might

first that area as their chest. Medically, when I was doing the research I gained from some of my colleagues the consensus would be that

We wouldn't necessarily change the term because the cancer is technically of the breast, but for some people we could put, for example in the future if we knew that somebody didn't like that word, could we write in their own right letter chest screening. There are small adaptations that we can make. Obviously Outpatients did a really amazing campaign, think it was a couple of years ago now, which is called Best for My Chest. So they still refer to breast screening in the literature, but the campaign was called Best for My Chest.

Francesca Fiennes (09:10.862)
really well received as well. So there's lots of learnings about things like language as well. Long answer, sorry.

Jo McNamara Rad Chat Host (09:18.559)
It sounds absolutely incredible and so much work. No wonder it took you a long time to write up because it sounds really comprehensive. And one of the questions Naman and I will always ask to anyone doing research is, did you get the patient voice in there? Did you get like that really go into the communities? So it's so inspiring that that was your first port of call. It sounds absolutely fantastic.

Francesca Fiennes (09:24.184)
Yeah.

Jo McNamara Rad Chat Host (09:44.139)
definitely link it in with the show notes and encourage people to have a read of it. In terms of measuring impact, have you seen anything as a consequence of kind of the trust now adopting suggestions?

Francesca Fiennes (09:46.988)
Mm.

Francesca Fiennes (09:53.262)
Mmm.

Francesca Fiennes (09:57.795)
Yeah, I saw a few things. think, so this July the NHS have just announced they're an LGBTQ health and equalities review. So I did submit the research for that and they have stated that they will be looking into cancer screening. But one of the recommendations that came out of the research was for staff to have training so the people who did the survey had said you know have some people said I have been to breast screening I did feel and so if you read the report you can see that I've included quite a lot of quotes in the community some are quite

hard for maybe services to hear so people stated that there was an ignorance about LGBTQ lives, people said you know I simply can't be screened, lots of stuff about like the waiting room, so they also said that staff didn't get much training so one of the first things that we did was to give training for a whole staff, excuse me, so that was radiographers and admin staff and so some trusts have just trained radiographers but to me it was really important that somebody's coming into their appointment.

And what was interesting in the research actually, wrote about their experience about being a butch lesbian and how they dress quite masculine and people might read them as a man. And so it was really interesting to see that actually.

training would be beneficial for staff, regardless of if somebody's trans or non-binary, but for people who identify as lesbian as well, or even people who don't identify as part of that community but might be misrepresented. We'd have things like people calling up with a more masculine voice and staff would put the phone down because they thought someone had called the wrong number and things like that. the training we had was also from outpatients and that was really useful. So we had one for admin staff, one for radiographers, so the radiography.

Francesca Fiennes (12:00.194)
anyone listening, this is your sign to train your staff group, I think even if people feel they are working in a staff group that is really inclusive and friendly, you definitely still learn something from the training. Like I learned something from the training. Some of my colleagues kind of felt like, I don't know if I need to come. And they left and said, actually I learned so much about trans and non-binary.

like some of the care that people might need. Also just generally some of the medical conditions people might have, even if they aren't LGBTQ, that can impact things like breast screening. They spoke to us about all the different types of surgeries people might have. So it depends, for example, even if someone has had top surgery, they might still actually need to be screened. radiographers can do that with different screening techniques and things like that. And also, yeah, I think just like...

giving people bit more confidence. instead of saying, know, just say, would you like to be referred? And if you can see, someone says, these are my pronouns, where to write them down on the form, just making sure people are comfortable. And I think also.

There's maybe some panic about, don't want to get things wrong. And also maybe also a misconception that there aren't actually that many trans and non-binary people, especially who are over 50, because that was one of the other things that was interesting I think that we got from training is that there's maybe this perception that there's quite a lot of people who are trans and non-binary who are teenagers or in their 20s or 30s. But actually that we know from the census data that's just not the case. So we implemented the training and we know that some other trusts have also signed up for the training.

since we've been doing it in London, so that's really positive to see. And then as I was leaving, I was gaining the data that was evidence for the pathway and the trust I was working for out to retender. So I think I believe they're going to try and look at it for next year because obviously we have to re-win the contract. Obviously things like this, being able to spread awareness, get people to read it and have a think about.

Francesca Fiennes (13:58.927)
implications of it and then we also started doing things like putting up some outpatients, best for your chest, posters in our waiting room and stuff like that just so that people had, you know, I did make some suggestions like maybe let's move away from pink but some of those things are, also was found in the Maidstone research in their health equity audit as well so I would encourage because they've actually, they're kind of step ahead of where I wanted to be, unfortunately I had to leave but yeah I hope the NHS review will

take into account some of these things and maybe make those recommendations and hopefully make a national pathway. Because even if Kings do make a local pathway.

that would be just for the one trust with a big population. But then we've got to think about those patients who might be living in a more rural area. Even if it's only one person who would benefit, that one person could have breast cancer. So obviously breast cancer is unfortunately common. Screening is amazing tool. So that would be my hope, be that people hear this and go, oh, what can I do in my department? Or how could I maybe stick my neck out or advocate for patients, even if it's a small number? So I guess that kind of links to what I saying.

earlier about, you know, not just, I know we always say like for the many, but sometimes it's a few, you know, that we need to support.

Naman Julka-Anderson (15:17.401)
I think that stick your neck out kind of sticks out for me that actually training is amazing. Everyone can go, but also in the NHS charity sector, et cetera, you have your mandatory training, which has all of these themes, et cetera in it. But actually when it comes down to it, it's about being a nice human and actually wanting to help the different people in front of you and things like that. yeah, taking the training forward to realize, I think the pronouns bit is a really good one because actually a lot of hospital systems, they automatically

Francesca Fiennes (15:36.887)
Yeah

Naman Julka-Anderson (15:46.713)
just call everyone a he. And similar to ethnicity, that's something I noticed recently where I work that anyone, if you don't put their ethnicity in, they just go down as white British. And actually for some patients who then we saw, yeah, they were very much not white British. And it's just that kind of bias within the healthcare systems as well that actually, if we all have this training, you can take it further and notice and make things a bit more personalised for people.

Francesca Fiennes (15:49.166)
Mmm.

Francesca Fiennes (15:58.189)
Wow, it's fascinating.

Francesca Fiennes (16:03.886)
Yeah.

Francesca Fiennes (16:08.568)
Yeah.

Mm.

I think that's such a good point because to me, like doing health equity audits look great and obviously important like wherever you work, but I think to be a true, so part of the research that I was doing as well, partly was inspired obviously by Maidstone radiographers also, I'm an identical twin and my twins are on binary. And I speak to them a lot about what are your, you know, we'll just have daily conversation about, how did going to your GP go or how was your blood, you know, blood test or whatever. And seeing how, and I think,

There are maybe some people who don't understand, there may be people who are ignorant, there may be people who slip up and forget. But seeing the experience of trans and non-binary people in the UK, how they have to...

constantly remind people of their pronouns, particularly in healthcare. So I think there's research from Stonewall that 70 % of trans people experience transphobia in medical settings. That's just obviously way too high. And I think that even if people aren't experiencing phobia, that they're possibly fearful of the fact that they might or someone might misgender them. And then obviously if you're thinking about an area that can be quite sensitive. And also I think, you know, we're not talking about something that is simple like a blood test, we're talking about, you know,

Francesca Fiennes (17:25.914)
tests that can save people's lives. So to me, I think it's always, yeah, even if it's a difficult conversation with a staff group, let's say someone, this was obviously wasn't the case for me at King's. King's is a very LGBTQ friendly trust. I worked with the King's and Queers Network who also really helped me to think about organizationally and structurally how we could kind of push through some change. So I worked with Dr. Dan Bailey who works at King's and really great.

title now. an EDI lead at King's, sorry, someone called Megan Hackett and I worked with another radiographer called Lindsay Batty-Smith who's in the National Best Screening Programme who took part in the research and really helped me also, so shout out to Lindsay, who really helped me to share the survey with the community and also to kind of push this issue up the agenda because I think there are also

something that came up in the research is obviously we're not just talking about trans and non-binary people, outpatients. I've done a lot of research about lesbian people, women going to services, not...

I was at a Macmillan conference in, I think it was 2023, somebody from Outpatients was talking about their experience saying that they actually felt they had to go back in the closet when they were getting their breast cancer treatment because people kept referring to their partner who's on binary as either their male child or their friend. And they kept saying, no, this is my partner, like we're married, they're waiting for me for treatment. So I think it's not just necessarily in the breast cancer.

screening journey but also thinking about you know how do people feel comfortable going to their GP and telling them they have maybe a symptom how also in the research and the literature review I was doing found that there's a lot of risk factors for breast cancer that are higher in the LGBTQ population so smoking, drinking and things like obesity obviously things like obesity I that's a whole other conversation is that how it's measured and things like that but even so so we're seeing high risk factors

Francesca Fiennes (19:28.994)
bigger fears and negative experiences in healthcare. This is all before we then get people to come for screening. I think I also wanted the research to get people to think about health promotion for younger people, but then also for the system essentially to catch up, because there are people who...

The population who are 35 to 50 and 50 to 75 in South East London are quite similar populations, but then we see double or triple the amount of people who are between 20 and 35. we're going to see, you know, this population of people will get older and will need screening and how are we going to, you know, prepare for that and make sure that it's as inclusive as possible. Yeah, so I think kind of speaks for itself really, unfortunately, the statistics are.

not great, but obviously we can make a change from that because we know that breast cancer unfortunately is also going to be increasing the rates of that. So lots of change to work on.

Jo McNamara Rad Chat Host (20:24.961)
Francesca, your twin must be so proud of you because you speak so passionately. can really like it comes across in your tone of voice and how passionate you are about this topic. It's just absolutely incredible. So I hope you do kind of take some time to reflect on just how amazing you are and the work that you've done. And hopefully that trust will realize just how good your recommendations are to then implement.

Francesca Fiennes (20:34.209)
Mm-hmm.

Francesca Fiennes (20:54.189)
Yeah, I hope so. Yeah, I mean, when I told them I was doing it, I actually won an award last year at King's for, by my desk, I can see it now. So it always reminds me like, don't give up, keep fighting. It was an Advancing LGBTQ Inclusion Award. And it was really interesting because some of my colleagues nominated me. And there were senior leaders at the trust who were at the award. So I think that was really nice to see that. think people, once you've done the research, even if it is a bit thorny or tricky to find the evidence, because one of the things I did come up

against the literature of view is lot of the evidence from the states. So, you know, does that translate to the UK? But then when I was actually looking at the numbers of people we are missing out, so this is another challenge, getting, how do you get the data? If people aren't registered on our system and people aren't registered at the GP, how can we guess? But I did find that something like, let me find, because I've written it down here.

So over 50 in all the South East London boroughs, there's 1,500 people who are registered as either trans women or trans men. So slightly lower numbers of trans women, about around 750. And the trans women registered, that's in the census. So this isn't GP data. some people might be...

might put themselves down as a trans woman on the census but be registered still as a man at the GP or male at birth and then same for trans men. So we don't actually have the data as to how many people are changing their markers. And then obviously the census, the gender answer is one of the most unanswered ones out of the whole thing. So again, possibly that number is conservative. And even when we calculated for possibly lower screening attendance, things like top surgery.

people may be not registered, things like that. We still figured it was possibly across the, across the, month, so obviously people need to be screened every three years. So over three years, calculated that as somewhere between about 10 to 20 people being missed per year, per month, sorry. So per year, that's at least 102. So probably missing about...

Francesca Fiennes (23:02.037)
of quite a few cancers a year in breast screening from people in just in Southeast London from people not coming. That's conservative. mean, it could be more like 40 people a month being missed out, depending on their markers or if people maybe go to private screening and things like that. Obviously, unfortunately, particularly trans people are less likely or more likely to be in.

unstable employment, more likely to live in unstable housing, more likely to have other housing or mental health needs. I think screening isn't necessarily the top of everyone's list anyway. I always say this in public health, like we can do everything that we want, but until people's material conditions are better. So I always try and advocate, and in the research, kind of advocate for just like general social equity. And it was really interesting in the research because some of the participants said,

Yeah, I do sometimes think that being LGBTQ.

means I face some different barriers, but I'm also thinking about people who can't get the bust of screening or people who have other health or housing issues. So even actually in the survey, were people who LGBTQ did express solidarity with other groups. So I think the NHS is generally like, and we saw that with the first breast screening national campaign in February this year that there is more money and investment going to promote health promotion of breast screening.

But I think there are still, I guess in lots of cancer services or screening, still some ways to go. So one of the things I'd also really love to see in breast screening in general is pay time off to attend appointments. I think if people are having to miss work, particularly for those who most vulnerable, people aren't going to come. you're looking at losing...

Francesca Fiennes (24:48.589)
know, half a day's work, £50, £100 of money for someone who is really on a budget, you're possibly not going to do that. yeah, that's something that I also think.

could be advocated for across the UK is for something that's like a life-saving appointment, know, screening, could be over 40s health checks, stuff like that. If people can get paid time off for that, we'd probably see, because we can't incentivise people to come because they are optional tests. You you don't have to come to screening. There will be a proportion of people who don't want to come or don't want to know, or however much we shout about it in Peckham Square or online, people aren't going to come. But I think that would be a really amazing thing to reduce some of the...

Because unfortunately social deprivation is the highest cause for health inequalities, isn't it? So I think that would be... If they let me into government, that's what I'd say. Give people time off for screening.

Naman Julka-Anderson (25:37.105)
It's a great speech I have to say, lots of stats exactly hitting the marker. I think it's pretty simple, if you can diagnose someone early, you know, get them back to work, they're going to contribute back into the economy quicker and live longer etc.

Francesca Fiennes (25:50.295)
Yeah.

Naman Julka-Anderson (25:51.991)
pay more taxes, blah, blah, blah. But that's not how systems work, unfortunately. As you know, painful lesson of coming into the NHS. Everything is very slow. But I think something that's kind of come across as well is around the intersectionality of the different groups within this. So the acronym LGBTQ plus is obviously massive. But within that, the intersectionality of different ethnicities, different backgrounds, et cetera, also comes into it. How do people account for that from

Francesca Fiennes (25:56.799)
No.

Francesca Fiennes (26:00.585)
Yeah. Yeah.

Naman Julka-Anderson (26:22.262)
I don't know, not just from a training perspective, but from a service design perspective.

Francesca Fiennes (26:26.783)
That's a great point. think, I mean, even in the research that I did, although we were out like leafleting and trying to get as many people to do it, we didn't get the target amount of people we wanted. So we were funded by the Cancer Alliance for the training and for, I think it was my first health promotion role. So I didn't, and we had funding to pay people for their time if they were being one-on-one interviewed. What I didn't factor in was,

and

possibly more consultancy fee to work with smaller organisations. So for example, the ethnic diversity could have been wider. The diversity of people across the LGBTQ community could have been wider. I think in general, what would be really lovely to see, I know that we do see it in maybe some cancer care, is more personalised care. And I don't know if that would come from a standalone screening service or a GP, but for example, like if we could call people before their appointments and say,

what are your health or social needs? know, for example, someone says, because I think there's a lot of mistrust in the system from a lot of groups. So I think there are lot of communities who have been treated badly in healthcare, who've been ignored. I think there's something to say for, if we're looking at...

either people who are LGBTQ and or identify as women. It's both groups. People have probably experienced quite a lot of health inequalities. And I think there's a quite, sometimes we see like the same people who experienced, for example, maternal health inequalities or reproductive inequalities are sometimes also groups that don't come forward for things like screening. So white women tend to come the most for screening. And that's not necessarily surprising in the data. But then for example, we see that there are a lot of people in...

Francesca Fiennes (28:10.796)
in the area I was working in, there a of people in Stubbock who don't speak any English. Then there's that case of, why aren't people being given free English lessons so they can integrate and come to their healthcare appointments? So one of the things that I did was to make a glossary of all the breast screening words. It was a bit of a kind of low cost option, but Google Translate often gets the words super wrong, particularly in some languages that don't use like a...

an English alphabet. if they're characters, for example, like Mandarin doesn't translate well, Punjabi doesn't translate well, especially if you're talking about some intimate parts of the body. So I think there are little things that services can do to make things a bit more inclusive. But I do think that has to be from the top down if you're trying to design it more inclusively, because I know that there's loads of great public health teams, the health motion teams doing things like really small things on the ground to try and reduce health inequalities. But I think

I would love to see the government, if they are sort of rehauling the NHS, to really put some funding into health inequalities and design them from, excuse me, the top down. for example, breast screening does quite well because the breast screening hub, there's a section of the website in London, for example, that says if you have any accessibility needs or language needs or any other social needs, please contact us. I think that process could be a bit more formalised because I think people aren't seeing the phone.

sort of in a call centre setting. But if, for example, there was a way that people could be trained so that we could make sure that we can get, know, where would you most like to be screened? You know, who, like, what would you like the, for example, the teams to know? But I also think other issues are the appointment for a mammogram is super tight. It's like six to eight minutes. So you some people looking at.

either 40 people a day if you're on a mobile site, so a site that's a satellite so it doesn't actually move but like a van or might be somewhere posted up in a shopping centre or 80 a day and that can be higher with algorithms based on if people are coming or not so that's not necessary enough time so we also can book people in, my last job could I, don't do it anymore, but can book people in for double appointments so

Francesca Fiennes (30:29.184)
Let's say for example, someone who's LGBTQ experiences a lot of dysphoria around their body. In theory, they can call the breast screening hub and say, I need a breast screening appointment, but I'm really anxious about the experience. Can I bring someone for support? I think I might need a longer appointment. We can facilitate that. But sometimes it also depends on the GP data. So in breast screening, they take the data in London, at least from a system called BiaSelect. And again, that's only pulling people with a female marker. So at the moment,

the best kind of solution would essentially be to have a pathway in a local hospital and then promote that to GP. So then the GPs would still have to let us know, but then at least we could do some community-based health promotion. The other thing I forgot to mention that came out of the research was that we did do this as well and that we were recommended to do targeted to community health promotion. So going to LGBTQ community spaces. So again, if you're listening, I can guarantee if you live in, even if you're in a small town, there will be

a pub or a cafe or a monthly meetup or something. So we went to, there's a big LGBTQ community centre in Southwark. So we were lucky that that was in our area, but a lot of groups across London use that centre. They are amazing. They run so much different stuff. They have like a, a Alcoholics Anonymous group. They have like co-working sessions. They do yoga. They do loads of other health related stuff as well. So we had

a kind of cancer screening and symptoms health promotion event there, which went pretty well. We think we spoke to about 40 people and we timed it with this other support group as well. And that was a really nice opportunity to be able to leave, also leave some information there. I also worked with a great nurse who's called Flora, who works at the, I'm trying to remember now. Where do they work?

They work at the UK Cancer and Transition Service. So there's some great people I think we just need to fund. There's people who have connections to the community. The community exists so we just need to... So think the South East London Cancer Alliance were really good because they've also funded some cervical screening health promotion. They also went to a big festival, think it's Mighty Hoopla in Brockwell Park, to do some health promotion there.

Francesca Fiennes (32:52.735)
This kind of stuff, I think we can also ask the community if we have time and money to pay for people's opinions, know, how could we reach the community better? What would you like us to do? And I guess that's where the creativity comes in of like, you know, originally we were just going to do a, like we were just sort of kept doing some kind of generic health promotion and some training, but actually people saying to us, no, please come, come to us. So that's the thing, like people are out there. We just need to get to them or in my opinion.

And that does involve, I think also, maybe a bit of extra commitment. Like that was in an evening. Sometimes you have to be willing to work. I know it's not accessible for everyone, especially if you have kids and partners and dogs and things like this. But being able to do stuff on the weekends and evenings, I think also is a bit more equitable. Because if someone's working nine to five, we're not, unless we go to their workplace, we're not going to get the information to them. So that's my other tip.

Jo McNamara Rad Chat Host (33:50.894)
You make so many great points, Francesca. And I can imagine anyone using this podcast episode for CPD. They are literally scribbling. there's smoke coming off their pen thinking, oh, she said another tip. Quick, write that down. But it is, I suppose, the way that you've done this project really does show that, you know, there are things that people maybe don't think about when they are starting to think about how to connect with the community. Especially when it comes to around public health and...

Francesca Fiennes (33:58.015)
Hey

Francesca Fiennes (34:13.643)
Mm.

Jo McNamara Rad Chat Host (34:20.973)
I definitely think there is a role for care coordinators in the health service, especially within oncology. just think how great would it be to have someone who knows you and transitions that entire pathway with you, whether you stop it literally screening or whether you then need to continue on. just think, especially for those who are vulnerable for whatever reason or have a protected characteristic, I just think.

Francesca Fiennes (34:40.533)
Mm.

Francesca Fiennes (34:46.955)
you

Jo McNamara Rad Chat Host (34:48.555)
those roles could be so powerful and support healthcare professionals who maybe do only have six to eight minutes to be able to do a diagnostic test. When you kind of say some of those statistics, it does hit home, doesn't it? What we as healthcare professionals are contending with, but also why the service doesn't allow for more personalized care. And we say it day in, day out, know, Naman and I are constantly talking to colleagues.

Francesca Fiennes (35:00.299)
Mm-mm.

Jo McNamara Rad Chat Host (35:18.407)
in patients about the need for personalized care. God, I'm giving a lecture on it on Monday and I'm so passionate about it. But the kind of the resistance from people out there to go, just don't have time and time is always the biggest barrier. But it is, it's having to not use that as an excuse and think, well, we can't not personalize care for these people because you're risking their lives.

Francesca Fiennes (35:32.971)
Mm.

Francesca Fiennes (35:42.508)
Yeah, I think that's a great point. also wonder where like social prescribers and other professionals could come in. For example, if we know at GPs that somebody, you know, let's say a GP or a nurse or social prescriber is asking someone, you know, have you been screened recently or, you know, what's your lifestyle like? These kind of questions. That's a great opportunity where we can see, because I think the health economic argument is great. You know, for example, if people are more likely to come to screening that saves NHS money.

In theory, we'd want incentivise it, or let's say give people time off work so that they can come to their appointment because that person will feed into the economy and be healthier and etc. etc. I think on that, I think you were saying earlier, Jo, like, and Namin as well, the human level is like at the end of the day, if somebody doesn't come to screening, particularly somebody who's maybe already not going to, and this is of any community, someone who's already not going to the GP, they've already got risk factors, they're a higher risk factor.

not just developing cancer, then possibly finding treatment harder, less likely to lose their job or have insecure housing. All of these things roll on. We see that in A &E and in health and social care. We're not necessarily looking at a massive number of people. We might be looking at people who do have quite a lot of crossing over. think, yeah, time is precious, but yeah, like you said, life is precious as well and health is precious. So I think we want to see people

living longer and in less ill health. I think the early preventative messages even for people who, I don't know, like let's say I did some health promotion training for staff just to give them like sort of a mini make every contact count just to say, you know, I know it's you've only got really, and this is this massive pressure on radiographers and like it's hard to hire people and things like that. But just to give people bit of an insight, but you can have, you could have a 30 second conversation with someone and show them how to check.

their breasts or their chest or you know you could give someone a leaflet about risk factors for breast cancer because a lot of people for example I actually didn't know this when I started I remember telling my manager we were like no but finding out how much a risk factor alcohol is for breast cancer is huge so that even knowing that maybe some people might reduce their consumption exercise can reduce your risk of I mean not just breast cancer but basically every illness under the sun

Francesca Fiennes (38:04.554)
So for some people that might be quite motivating of like, you know, might not necessarily stop drinking or run a marathon or something, but I might try and do like maybe 1 % more every day of these health sustaining behaviors. So I think that sometimes we think, we can't do it because we don't have time, but actually, you know, giving someone a leaflet takes two seconds, you know, so that would be for departments to think about if we've got someone in.

even if they are going through, for example, I know that there's loads of evidence about if somebody's going through chemo, that exercise might help them through, know, obviously if they were able to, but same with like muscle mass before somebody then has cancer, there's evidence in there that if you have a higher muscle mass, you might find things like chemotherapy easier. So I think there's little things that we can do and little encouraging things. I think also,

you as a healthcare professional, you might be that one person that that person really trusts or someone that they go, oh, this person's been really nice to me today. So maybe someone goes to their GP and they see someone different, but you might be the person, you might think it's a six minute, I'm seeing loads of people. But to them, might be like that person really, know, like kings when I was working, our staff were just got so many compliments, people, there'd be people who'd never been to the screening before or people who'd been before, had a negative experience and came back.

And that six minutes can then change someone's life. That person might come back three years later, get diagnosed and you save their life because you're a great health professional. I think, yeah, maybe we could all be, same in public health as well, know, we could all be, you know, sometimes we think, what difference can it make? But yeah, we can also make us a really small, a really small one that can really help someone. So I think we have to not give up.

Jo McNamara Rad Chat Host (39:50.734)
I can't let you go from the podcast without asking about another project that you did in another life. Tell us about your Sex Ed project because I think it's just absolutely incredible.

Francesca Fiennes (39:58.868)
Yeah.

Francesca Fiennes (40:03.978)
Great, yeah, they've had a few lives now in public health. So I used to work for a charity called Brooke. I used to teach sex education in schools and I got furloughed in lockdown, which was fun. Sounds a bit nicer maybe than it actually was. It bit stressful not knowing if I was going back to work and things like that. But I noticed that even though sex education became mandatory, that it became mandatory in 2019, I left school in 2014.

I remember thinking, I'm learning all this really interesting stuff. I wonder how many adults don't actually know some of this information. So I started off doing some quizzes in lockdown of like different, like fun statistics. Some were, you know, quite silly. Some were a bit more kind of serious ones. And then some of my friends really encouraged me. were like, you know, you should write about topics and then kind of just snowballed. And yeah, so I still do it a bit on the side. Because I, yeah, I think that's, I mean, it's interesting how

Sexual health and breast screening actually have some quite similar barriers. Sometimes people are, you know, fear of finding something out, fear of your body being seen by healthcare professionals, like quite a lot of stigma. They're different stigmas, but there are quite a lot of stigmas attached to both. And then now in my new role, I do spend quite a lot of time working on some sexual health content. So it's nice to have, I guess, yeah, different topics on the go. And I think...

I guess they're around, a lot of them also, for example, in sexual health as well, the LGBTQ community also experience quite a lot of health inequality. So I think a lot of that work that's been done by a lot of great HIV activists and stuff like that did really make me think, I wonder how, well, what the health inequalities might be in breast screening. then, yeah, so that kind of leads me all in. It's a great experience. There's lots of health to promote, lucky me.

Jo McNamara Rad Chat Host (41:53.3)
Jessica, just give us a couple of stats. Come on. Have you got any in the top of your head?

Francesca Fiennes (41:59.763)
I think, okay, I think there's probably a couple. So there was one about the, I think it was the percentage of adults who'd never had a sexual health test before. So it was either 20%, 30%, or 40%. So what do you think? What do you think it was? 20%, 30, or 40?

Naman Julka-Anderson (42:19.832)
40.

Jo McNamara Rad Chat Host (42:20.685)
40.

Francesca Fiennes (42:21.898)
You're right, yeah, you're healthcare professional. So that's kind of cheating though. But yeah, so there was some research done in, so I was doing these quizzes in 2020, so it's probably a bit out date now, but there was some research done in 2019 that 40 % of sexually active adults had never had a sexual health test. So I think, and then also the other, I'll reveal the facts, but the biggest growing age cohort of STIs is the over 55s. So a lot of people think people are...

you know, okay, there's no risk of getting pregnant, but actually we still need to be promoting safe sex to everyone, not just, so we always hear about children and young people and teenagers, but still need to do some health promotion that over 55s.

Naman Julka-Anderson (43:06.146)
When you talk about a sexual health test, what do mean?

Francesca Fiennes (43:09.298)
So like a free, so there's often, we're in have something called Sex Child of London, so it's like a swab that tests for chlamydia and gonorrhea, and then it'd be a fingerprint test, which tests for HIV and syphilis. Yeah, so that would be people not going for those. I think the sample size is quite small, but I can definitely see from like my, you know, I still get DMs about like, you know, how long after having sex would you wait to have a test? So it's two weeks.

at least if anyone's listening. But yeah, so I think that even for adults and the sexual health is like a massive mindful as well. There's so many, a lot of the symptoms as well. It very interestingly can, for example, the symptoms of chlamydia can also sometimes irregular bleeding, for example, can be a symptom of things like cervical cancer as well. So I think that the knowledge kind of across a lot of these things, I think particularly like breasts, like vulvas, penises, these type of things, are all intimate parts of the body. And I think that

There's quite a lot of embarrassment and shame around some of those. I know we see similar in prostate cancer that a lot of people don't want to go for a test because they're worried about misconceptions about the area or the test, things like that. So similar stigmas actually that cross over.

that we can change.

Naman Julka-Anderson (44:24.473)
And there are some countries in the world where you don't have sex education, but you can access pornography so easily. like, I like this is a whole other podcast episode itself.

Francesca Fiennes (44:31.368)
Yeah, yeah, I mean, yeah, that's actually that's another, that's another thing. Yeah. I actually did my uni research on on what sex educators think about pornography education. So I'm trying to get that into a journal at the moment as well. So really interesting. Also interesting topic.

Naman Julka-Anderson (44:52.557)
Francesca, what's next for you?

Francesca Fiennes (44:55.102)
Great question. What is next? I'm going to try and publish some research. think I'd really like to say the role I have at the moment is a second man. So I'll be in the council I'm working in until next year. think I'd really, gosh, yeah, I'd like to stay in health promotion, but I think the kind of strategy and some of the higher up more planning is quite interesting to me. think particularly because in those fields, I think you do need people who are a bit like we were talking about earlier, you need people to be a bit.

direct and people to advocate for communities that aren't necessarily represented. think also you have to be really, like I also worked in kind of women's health, reproductive health, sexual health so far, but I think there are quite a lot of public health issues, like mental health for example, that are quite widespread as well. So I would be open. I'd quite like to say the things that I'm, you know, quite confident in talking about and I would love to also.

track if this research that I did and also if the NHS are going to be making some of those changes. I've said to the department I used to work in, you know, if you need me to come back and, or like, you're not asking me about something that I wrote or I did, like, please, like, I'm happy in my free time, you because I really, I really cared about this research. I think I put a lot of, like, you know, not just for the community I work in, but also like I was saying for my, my twin and a lot of their friends, you know, I'm seeing a lot of people not access healthcare.

because of sometimes a perceived fear of being judged or, and I think that goes across a lot of people. So yeah, we'll see, stay tuned.

Naman Julka-Anderson (46:32.109)
So Francesca, we always end our episodes with top tips. You've given thousands of bits and pieces throughout, but I suppose focusing for maybe patients who are not as confident for accessing screening, what advice would you give to them? And then maybe professionals and students who are looking at screening or you know they work in that area, what advice would you give to them?

Francesca Fiennes (46:54.344)
Yeah, great question. would say for patients, are, if you just have a Google of trans-friendly GP surgeries, would say if you're a surgery, and even if you're part of the wider LGBTQ community, you have a right to healthcare that is accessible for you to people who you feel comfortable with. So I would say maybe ask some friends or family as well, know, where do you go? Do you like your GP? Do you feel comfortable?

Not to say that changes can't be done, for example, in GPs where people have had negative experiences, but I think if you're not going to access healthcare, and you would if you were somewhere more friendly, please do. There's also something called Pride in Practice, which is run by the LGBT Foundation in Manchester, and you can see which surgeries across the UK have done that training. So that's a great thing to do. I would also look at outpatients content, make yourself familiar, because that's written really excessively.

and inclusively and make yourself familiar with the key signs and symptoms. Maybe have a think about things like some of the risk factors as well. Obviously, each to their own. People have their reasons for doing things like drinking, smoking. But if you can, try and seek some help to reduce some of those things or stop smoking. For example, I would say for health care professionals, obviously, if you do work in screening or anything to do with cancer,

reading the research, another plug. I would also say my top tip would be try to worry less about getting things wrong and try more focus on patients and what might make people more comfortable. Nottingham, a hospital in Nottingham did some research about checking people's names. They came in, they found that a third of all of their patients overall had different names that they used personally than what was on their form. even

for outside of the LGBTQ community, it's really useful just to ask someone, how would you like me to address you? You can ask people, if someone doesn't have different, they don't mind about their pronouns, that's fine. You've just asked a question that wasn't relevant, so that's fine. So I would just say, always ask people, how would you like to be addressed? you have any, how would you like me to refer to you? And then if somebody does use pronouns that's important to them, that invites, and that can really set the tone, I think, if you get something wrong.

Francesca Fiennes (49:11.945)
correct yourself and I think just be respectful, don't worry about how it feels for you to think about how can I make my patient the most comfortable. And then I would say for students, if you're thinking about, particularly if you're maybe a medical student or a radiography student, thinking about maybe some of the more marginalised communities who, know, so when I was looking, doing the literature review, I realised there was no research in London or the country on this population, so.

If it's not there, make it so that the next time someone has that conversation at work, can say, know, someone, hopefully someone somewhere can say, there's some research done in South London that showed this. So I think we should do this in our department. So if you see an issue that isn't researched, whether you're from that community or not, don't feel, don't feel afraid. And you'd be surprised actually how many people will, cause a lot of my colleagues read it they were like, wow, I had no idea there were so many people in our area. I had no idea that so many people.

weren't being invited to screening, things like that. So it's often just that people don't know, they don't have the data. So yeah, be bold is what I'd say.

Naman Julka-Anderson (50:21.753)
Fantastic, thank you so much. I could listen to you talk for hours and hours and Also Bake Off has started so if Paul Holly would see it feel like I'd give you a handshake like he would for this episode. I've loved it. So yeah, obviously we'll link to all your research and hopefully spark a few changes etc. But thank you so much for coming on.

Francesca Fiennes (50:24.039)
Thank you. Thank you.

Francesca Fiennes (50:32.809)
Thank you.

Jo McNamara Rad Chat Host (50:35.277)
you

Francesca Fiennes (50:45.267)
Thank you so much for having me. It's been great to talk to you both as well. Amazing questions. I had to stop and think, have a look in my brain to answer some of those. But yeah, thank you so much for the work that you do as well, because your podcast is amazing. I'm excited to hear it come out.

Jo McNamara Rad Chat Host (51:03.311)
Francesca, you're so inspiring and yes, keep an eye on Francesca and what she's gonna do next, because I anticipate big things.

Francesca Fiennes (51:13.065)
Thank you.

Naman Julka-Anderson (51:13.594)
Thanks everyone for listening to Rad Chat with me, Naman Julka-Anderson and Jo McNamara. Our next guest to feature will be Natalie Hall as part of our Living With and Beyond Cancer series talking about living with metastatic breast cancer and Firefly fitness which involves ballet. Thanks everyone and take care.