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Rebecca and Sarah discuss the importance, impact and limitations of the breast, bowel and cervical cancer screening programmes in England, Scotland and Wales. Our GP hosts talk through how the three different screening programmes are operated, the benefits of increased patient uptake, plus some of the barriers to attendance and how primary care health professionals can help.
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GPs Talk Cancer is the podcast series from GatewayC. GatewayC is the free early cancer diagnosis resource funded by the NHS and is part of The Christie NHS Foundation Trust.
Produced by Louise Harbord from GatewayC, and Jo Newsholme from Rethink Audio.
DISCLAIMER: We know this podcast might be of interest to anybody, however it is aimed at primary care health professionals. All patient cases are based on real stories from our clinical practice as GPs. They are fully anonymised with no identifiable patient data. All featured statistics are accurate at the time of recording. All views expressed by guest speakers are their own.
Sarah: And you know that before that they had to collect three samples and keep them…
Rebecca: Yeah, and the compliance…
Sarah: Smear your poo on a bit of cardboard and keep it for three days. It’s just not…
Rebecca: Wow!
Rebecca: Hello and welcome back to season two of GPs Talk Cancer. I’m Dr. Rebecca Leon and joining me again through this podcast is Dr. Sarah Taylor. We are both practicing GPs and GP leads for Gateway C. We’re both passionate about diagnosing cancer early and in this podcast, we want to share our clinical experiences with you so you can make better, faster, and more confident cancer diagnosis in primary care.
So, there’s some official stuff to make you aware of. We know this podcast might be of interest to anybody, but it’s really aimed at primary care health professionals. And although all patient cases are based on real stories from clinical practice, they are fully anonymised with no identifiable patient data.
Gateway C is the free early cancer diagnosis resource funded by the NHS and is based at the Christie NHS Foundation Trust. GatewayC is a national programme across the whole of England, Scotland, and Wales. Register online to gain access to free interactive courses, documentary-style videos, referral maps and more.
So, today we’re going to sit down for a coffee, or a beverage of your choice and talk about national screening programmes. These will cover breast, bowel and cervical cancers. Hi Sarah.
Sarah: Hi Rebecca, how are you?
Rebecca: I’m okay. Nice to see you on this, uh, autumnal day.
Sarah: Sunny though.
Rebecca: Yes, it is sunny. How’s your couple of weeks been away from here?
Sarah: Yeah, nice, yeah, hot. I was in Sicily, so it was very, very hot, which is probably not very good for me, I don’t really like the heat. Um, but it’s better than the rain in Manchester, so…
Rebecca: Yes, it was a very wet weekend. Have you got your cup of tea with you?
Sarah: I’ve got my coffee that I’ve brought from home, and I think you’ve been investing in a fancy oat latte again.
Rebecca: Well, I’m a media city, you know, when in Rome! So yes, I think we’re ready to go. Today we’re going to do things slightly differently. We’re going to discuss the three screening programs separately. So as I mentioned, the breast, bowel and cervical or cervical. We’re also going to include some statistics. We’re going to talk about a case as well with each of them and actually talk about more specific barriers, which we mentioned as we go along.
So let’s start with breast screening and some statistics of interest. So breast cancer is the most common cancer in the UK affecting females. Screening finds cancer in nine out of a thousand women. And it’s estimated to reduce the number of breast cancer deaths by 1,300 a year in the UK. The breast screening program is for anyone registered with a GP as female aged 50 to 70, and invited every three years.
Sarah: I think it’s with that, it’s important to remember that they, the practices are invited every three years. So, if your practice has been invited for breast screening just before you’re 50, you might wait until you’re nearly 53 before you’re invited for your first screening. If you move, then you can sometimes miss things. There are ways to opt in, but I think it’s important to remember that it’s actually done on a cohort, practice by practice basis rather than the cervical and other things which are done as the opportunity arises.
Rebecca: Okay, and a further statistic is over a quarter of breast cancers are diagnosed through the screening route. As we know, Sarah, the breast screening programme, which is a mammogram, isn’t 100 percent.
Sarah: No.
Rebecca: What kind of problems can arise from the screening program and the mammogram itself?
Sarah: So, as you say, Rebecca, like any test, mammograms aren’t 100 percent reliable. Some of that’s down to the test, some of it’s down to interpretation of the test, because it’s not an exact science, and you can get abnormalities appearing on a mammogram that fortunately, don’t turn out to be cancer and that can cause quite a lot of anxiety for patients. Similarly, you can have a mammogram that looks… that is reported as being completely normal and actually if you look back further down the line, there probably was a small cancer there and that wasn’t picked up. That brings us on as well to talking about interval cancers, which are those cancers that happen between screening rounds, so the cancers that happen in the three years between when women are screened. Some of those, and I think around 80 percent of those, are actually new cancers that have appeared since the last screening, and so that’s one of the reasons that we have to be really clear with women and anybody who’s being screened, that if they get a new lump, they should still come and see us and the scan a couple of years ago isn’t reassuring. And then I think about 20 percent on, of those are ones where actually if you go back you can think actually it probably was there but we didn’t see it. So I think it’s just being aware of the positives and negatives of the programme are quite, is quite important.
Rebecca: I mean, they’re saying about 6, 000 women in the UK or in England will develop an interval cancer. So you’re absolutely right, Sarah. I mean, 20 percent of these 6,000 women, actually, they did not pick up the cancer on the previous screening. So, the patient was giving, was given a false negative when actually there was a cancer there. And around 80 percent of those 6,000 women with an interval cancer will have developed cancer between screening appointments. But there was no sign of cancer at their previous screening, so as you say, it’s all about us being vigilant and explaining to the patient to make sure that they examine their own breasts and any problems to be re-examined.
Sarah: The other thing that’s interesting is that the, you know, obviously we’ve said already that screening has, is very good for diagnosing cancers early, but actually the uptake of screening, it varies across the country and it varies in different groups and that’s one of the things we’re going to talk about. But it’s only around 65 to 70 percent in a lot of places and actually if you think that, see our UK are saying that 1,300 cases, 1,300 deaths a year are prevented by screening. If you actually got 100 percent uptake of screening, you would presumably prevent…
Rebecca: Nearly 2,000 probably, yeah.
Sarah: Yeah, which so I think that that’s where we have a role in primary care is to try and promote the uptake of screening as a way of diagnosing cancer earlier.
Rebecca: Any consultation, if they’re coming in for nothing relevant to the screening programme, but you can see that they’ve had a no show or they mention that they’re not going to a particular screening programme, talk to them about it. Use it as an opportunity to actually say to the patient it’s really, really important.
Sarah: And I think that there’s been some research, I think it’s one of the things that they thought with the bowel screening is that letters coming from your GP are more powerful than something coming looking like a circular from NHS England because people get a bit bored with official letters, don’t read them, whereas something either coming, either a text or a conversation or whatever from your GP actually has more impact. And not just your GP, you know, practice nurses, receptionists, everybody can help with that and I think it makes quite a big difference.
Rebecca: Do you use Accurx in your practice?
Sarah: We do, I love
Rebecca: Accurx is brilliant and we actually use Accurx a lot for this kind of thing as well. Because you get a text from the GP practice, they are going to maybe answer it and take it more seriously. I think you’re absolutely right.
So as, as part of the discussion around breast screening, I think it’s important that we discuss a case. Are you able to talk about that, Sarah?
Sarah: Yeah, so I saw, well, last time we had our patients at the practice, were screened from the practice, we became aware that actually when a couple of our patients who live in supported accommodation with learning disability just hadn’t attended and, you know, we had a bit of a chat with the staff about it and I think it was just, it was, it was difficult because the information was difficult for them to absorb. The staff didn’t really understand what was going on. But, but these people are just as at risk of breast cancer as anybody else. You know, we had a bit of a look around and there are some resources out there that you can direct to patients with learning disability. And obviously it just does depend a little bit on the level of learning disability as to what you can do but I think it’s important to think when you’ve got round of screening at your practice just whether there are some groups within your practice population who might need slightly different formats of information because I think that everybody, it was one of those things that makes me laugh a bit is that when it’s, you’ve got a letter at the bottom and it says if you want this in braille please call such and such and I think how are you going to read that? If you can’t see, why would you read the bit that says get it in braille? So I think we almost need to be a bit of a step ahead and think actually we’ve got this group of patients who might need it in this format. I’ve got this group who might need this format. What can we do to support those people? And possibly in, if you’ve got people, if you’ve got some, I don’t know whether you’ve got any patients in supported accommodation, maybe help with the staff as well to understand the reasons and to support them in getting patients to the screening vans.
Rebecca: Because patients with learning disability, they’ve got quite shocking statistics really, that compared to around 62 percent of patients without a learning disability, this was kind of 2021-2022, were presenting to breast, the breast screening program compared to patients with learning disabilities, it’s just below 48 percent.
Sarah: That’s not good, is it?
Rebecca: No, and I think you did touch on what primary care can do. You talked about the braille, large fonts, easy reading, and maybe a video format explaining what breast cancer, I suppose what breast screening is, that the support workers can support the patients with as well. So it’s for both. It’s for the patient, but also for the carers.
Sarah: Yeah, there’s some work that we’re doing within the Greater Manchester Cancer Alliance with some learning disability groups where they’re producing the information. So they’re sort of saying this is how we would want it, and this is what we would understand, and this is how we’d like it presented to us, which I think is a really good way of doing it, and I think if that works, we can start to expand that and do it for other things, because I think it’s very easy for us to assume a level of understanding or interest or whatever that might not be there.
Rebecca: You also mentioned in your practice that you use members of staff to actually be filmed and explain. And I think that was, that’s something I want to bring into my practice as well, because if they can see their practice nurse or one of the admin team or one of the doctors actually talking about it, it seems a lot more relevant than Mr. NHS talking about it.
Sarah: Absolutely.
Rebecca: So I think that’s, using focus groups I think is really, really good, but also members of staff that they may know.
Sarah: Yeah.
Rebecca: Let’s…
Sarah: Let’s move on to everybody’s favourite topic!
Rebecca: It’s your favourite topic! Let’s go on to bowel screening. So, some statistics. It is the fourth most common cancer in the UK. 12 percent of bowel cancer diagnoses were found through the screening programme. The screening programme also reduces a patient’s risk of dying from bowel cancer by at least 25 percent. Screening has been made much easier by the introduction of FIT in 2019, aka Sarah Taylor’s Mastermind subject.
Sarah: And you know that before that people had to have, they had to collect three samples and keep them, which I can understand why actually FIT…
Rebecca: And the compliance… Yeah, and the compliance…
Sarah: Smear your poo on a bit of cardboard and keep it for three days. It’s just not…
Rebecca: Wow! Going back to the FIT test, false positive and false negative results can happen, like any screening programme. There’s also an issue over overdiagnosis, so people may be diagnosed and treated for growths that end up being benign, that actually would not have caused harm. And this can be a fairly invasive test, through a colonoscopy and then biopsy. So Sarah, please tell us about FIT and how that compares to the previous test, the FOB.
Sarah: Can I tell you first who’s invited?
Rebecca: Oh, yeah. Sorry! Okay. I’ll tell, I’ll talk about the invited. So those invited to the bowel screening program is every two years and across England, Wales and Scotland and Northern Ireland, the age range will be 50 to 74 over the next year or so, but it will take time for everybody to catch up.
Sarah: Absolutely yeah. And you actually just get something through the post just around your birthday.
Rebecca: So…
Sarah: That’s a nice birthday present, isn’t it? You get to do your FIT kit. So I think when I was…
Rebecca: So Matt has just received his. He’ll be so pleased that that is live on air! It arrived, I think, at the beginning of the week. He was very excited.
Sarah: Yeah, Ben’s 15 days older than me, so he got his a couple of weeks before mine arrived.
Rebecca: How romantic!
Sarah: Birthday FITs!
Rebecca: Birthday FITs! I’m slightly…
Sarah: Younger.
Rebecca: Younger. I’ve got a few years to wait for mine. Okay, moving on. It’s always about an age thing with us, Sarah. Okay, so please tell us the difference or why fit has revolutionised bowel screening.
Sarah: So the, the FIT test is much better than FOB, as we said, because it actually, you only need one sample and it is much, much more reliable, so it makes it much more acceptable for patients to do. We’ve, we’ve talked on our episodes on bowel cancer about how to collect it, and we can go back to our mushroom containers, strawberry containers, chicken containers…
Rebecca: Can we just please just talk about that? I know we’ve talked about it on previous episodes, but I think it’s really important. How do you collect a good sample?
Sarah: Well, what I would suggest to patients is that they get a plastic container of some description, put some toilet roll in it, poo into that, and then use the stick from the bowel screening to collect the sample. As we have discussed previously, you don’t need very much, and actually, overfilling is quite a big problem. And you don’t want to, you know, you don’t want to be repeating these samples, really, do you? And you certainly don’t want to be at the end in the lab when the overfilled sample comes through. That’s not very nice. So, a small amount is enough. You just need to cover the end of the stick that comes with the sample pot, put it back in, and send it off. And because it’s only one sample, you can do it straight away, then obviously just flush everything away and chuck your container in the bin somewhere. I think the, the main thing that we really need to, there are two things that are quite a big issue, apart from the barriers to people actually doing it, which we’ll come on to in a minute. The other things to remember are that the bowel screening FIT, the level varies across England, Scotland and Wales. But in England at the moment, the level is 120. So you get told you’ve got a positive FIT with a level of 120.
Rebecca: That’s for the screening…
Sarah: The screening threshold. If we’re looking at a patient with symptoms, we’re looking at a level of above 10. And so therefore, if you’ve got a patient with symptoms, they should in no way be reassured by a screening test, even if it was two weeks before and we need to remember that. And the other thing that we need to just be aware of is that there’s quite an alarming number of patients who have a positive FIT, are invited for the next step, and bearing in mind that’s a FIT of over 120 in England and are invited for the colonoscopy and don’t go. And they’re at quite a big risk of having a bowel cancer and I think that we have quite a big role in primary care in encouraging them to go and have that done. I think they don’t go because they don’t want a colonoscopy, which you can’t blame them for.
Rebecca: Doesn’t sound fun!
Sarah: No, but actually you, you know, I think if you’ve got the positive test…
Rebecca: It’s almost if you embark on the screening program, see it through. That’s the thing. And I think it’s important for us as well in primary care to almost talk about all the steps, and you know, we’ve talked about PSAs in the past saying, what were we going to do if a PSA is…, you will be referred on for further investigations. Now, if your FIT is positive, the next step will be a colonoscopy. So it’s important that people don’t drop off the pathway.
Sarah: Yeah, I don’t think you should ever have a test done for reassurance.
Rebecca: Absolutely. Yeah. Cause what are you going to do with the answers?
Sarah: Yeah, absolutely.
Rebecca: Okay. So, we’re going to talk about a case as promised, and we’re going to look at another barrier. And this was a patient in my practice, who, his first language was not English, and, we have a fairly large ethnic minority community, and it’s been found that actually, within these communities, they have a lower participation in the bowel cancer screening program compared to white British adults. And there may be reasons for this. But health literacy is a, is a major factor. And you mentioned that you have patients also in your practice who literacy is an issue as well, and they’re almost embarrassed to share that, even with their closest family. And that can also be increased by potential language barriers as well.
Sarah: I think there’s also an issue, isn’t there, that in different cultures the idea of handling you poo, I mean it’s not an attractive idea for anybody is it, but no, but I think that there are some, some cultures and some groups who find that more difficult than others. And I think that that’s also needs to be addressed. And the other thing that’s a bit of an issue with this is that it’s not quite the same as, you know, with the breast, we were saying actually you could be proactive and you know your patients are about to be invited and you can go right, we’ve got this many patients who don’t speak, who need something in Urdu, and we’ve got this many patients who have a learning disability, we can send stuff out to them. Actually for the bowel screening, it’s all sent out, as we know, around our birthdays. And therefore you have to have a different way of contacting those patients. And you probably can’t do it proactively, you probably need to wait until they’ve not gone and you’ve got the DNA letters through and then contact them in a different way, which is just, it’s just a different way of doing things and probably not quite as satisfactory. I’d quite like to send them the right stuff at the outset. Unfortunately, I don’t think we have the power to do that.
Rebecca: So certain things we can do in primary care is… use of short letters or leaflets with alternative languages and maybe short videos associated with it with clear messages and asking the patients a bit like what you were saying with the previous group, with the learning disabilities, asking patients themselves which methods of communication works for them.
Sarah: Yeah, the other thing is if you’re going to be sending things out that are appropriate, you need to have recorded in the notes what is appropriate for the patient. So there are some people who will read in one language but speak in a different language. So you might want very simple written information in English, but if you’re going to produce a video or a piece of audio, it needs to be in a different language. And if so, you need to know what the preferred written and spoken language is and have it recorded in the notes if you’re going to be able to send appropriate information out to those patients, otherwise you can just send the wrong things.
Rebecca: Yeah, and I’m just thinking that the bowel screening pack itself, I haven’t looked in too much detail at it and I might as a bit of…
Sarah: Homework!
Rebecca: … as a bit of homework! Because I’d be interested to know the instructions actually in the bowel screening itself, how clear is that? I presume there are diagrams on how to fill it.
Sarah: Yeah, I think so, I can’t remember.
Rebecca: So it’s both our homework, Sarah. We’re going to open up a bowel screening test kit and just see if there’s any improvements from that end because actually we don’t get involved.
Sarah: No.
Rebecca: We get involved with the non-attenders. So it’d be, I’d like to see that. So weekend homework, Sarah! Okay. Can we go on to my specialist subject now?
Sarah: I suppose!
Rebecca: Okay, how long have I got, producers? No, they’re giving me like just a little amount of time.
Sarah: Six and a half minutes. Rebecca
Rebecca: And go. No, I’m going to rein this in today. So, the final screening programme that we’re going to talk about is cervical, cervical screening. And this is the 14th most common cancer affecting females in the UK. Cervical screening saves 5, 000 lives a year in the UK. It also prevents 70 percent of cervical cancer deaths. But 83 percent of deaths can be prevented if everyone attended regularly. So there’s still some more work to do from that. Since the programme started, cervical cancer incidence rates have decreased by a quarter in the UK. As we’ve discussed with the other screening programs, there are false positive and false negative results. The patient needs to be aware that if there is a positive test following the screening program, they will be invited to colposcopy to remove any abnormal cells, and there is always a risk associated with that. And just to overcome some myth busting as well, Sarah, that 22 percent f women believe that cervical screening, or it’s also known as the smear test, can also test for ovarian cancer. So…
Sarah: That always shocks me.
Rebecca: … we need to give them a bit of an anatomy lesson.
Sarah: Yeah.
Rebecca: Okay. But I suppose it’s that area, isn’t it? So it’s, it’s just for people to be aware.
Sarah: Yeah, and there’s a little bit of difference, isn’t there, in the way the systems work in England, Wales and Scotland. At the moment, in England, women are invited every three years from the age of 25 to 49, and then every five years from 50 to 64. Whereas in Wales and Scotland, they’re invited every five years from 25 to 64. There is some talk about that changing in England, but it hasn’t changed as yet, so we just need to keep an eye on it. The other quite exciting stuff about, because he was talking about how many cancers it prevents the screening, and I know we’ll come on to HPV as well in a minute, but I was just looking up – Australia are hoping to eradicate cervical cancer by 2035.
Rebecca: Amazing!
Sarah: You know, which is just 10 years… just over 10 years away, so that, that’s quite an exciting prospect, isn’t it?
Rebecca: Very exciting, yeah.
Sarah: For sad people, anyway!
Rebecca: For sad people, it’s exciting! I mean, to eradicate something that’s affected people for a long time is something very exciting. You mentioned about HPV, the human papillomavirus, which actually, again, is an interesting statistic. 98 percent of sexually active people will come across this in their lifetime. So I have patients that come, they’re mortified, they’re upset that they’re HPV positive, and it’s when you tell them that statistic that the majority of people will actually have it in their lifetime. But our, our, their immune system will get rid of it naturally. So it doesn’t, it’s not the end of the world if they’re HPV positive. However, can we talk about the HPV vaccine and also which common types of HPV, which can cause cervical cancer?
Sarah: Do you want to do that? It’s your specialist subject.
Rebecca: Oh, stop it, Sarah. Okay, I’ll talk more! So the two most common types of HPV, which causes 70 percent of cervical cancers. So 7 out of 10 cervical cancers are HPV 16 and 18, and these are the two strains that are used in the HPV vaccine, which is encouraged for secondary school girls, but it’s also now being rolled out for secondary boys as well. And the reason for this is HPV as well as, can be a risk for cervical cancer, it can be at risk for several other cancers including penile, anal, and head and neck cancers. Final thing about the vaccination programme is it’s great and the pickup is good because it happens in schools. And there’s also been a catch up for people who haven’t had it. But it’s important for primary care to be aware that we still should encourage patients to attend their screening appointments as well, not just because they’ve had their vaccine. That doesn’t mean because the 16 and 18 HPV types, are part of the HPV vaccine, but there are other strains of HPV which are picked up as part of the screening program. So it’s really important that they do show up.
Sarah: I think it’s a bit of a problem in that younger age group, isn’t it, that the women between 25-35 will, a lot of them will have been vaccinated and they think they’re not at a risk and we do struggle to get some of them in to have their smears done. So I think it’s something that we, yeah, we need to be making sure that people are aware of.
Rebecca: So, just a further myth busting, for the uptake in the LGBTQI plus community. The screening uptake is thought to be lower in this particular community because there was a misconception that for people who don’t sleep with men, they’re not vulnerable to the HPV infection. So therefore, a lot of lesbian and bisexual women feel that cervical cancer, they’re not at risk because they’re not going to catch the HPV infection.
Sarah: And there’s also an issue for breast and cervical screening with trans patients, isn’t there? In that people who were born female but have transitioned to male will not actually be called for screening, but may have, if they’ve still got a cervix, and if they’ve had breast reduction surgery, they still don’t have all of the breast tissue removed, so may actually need screening but won’t be called for it. So it’s quite, it’s quite a difficult one to work out how to negotiate because you can’t necessarily search for these patients on your lists to invite them. I think it almost has to be an awareness within the population and then a sort of awareness within primary care that if you see somebody come in and you’re aware that they’ve transitioned, you probably need to ask them about screening in a sensitive manner. And I know you’ve covered that in some of the work you did in the Cancer Conversation.
Rebecca: Yeah, and we talked earlier about the people invited to the breast, the bowel and the cervical screening is, it’s very, particularly the breast and the bowel, it’s a national invite. And, and particularly with the breast and the cervical, is anyone registered with the GP as female. So, it’s, we’ve had a few issues from both ways that people have been invited to the cervical program, trans women who haven’t got a cervix, and then we’ve got trans men who are being missed.
So, it’s… I, I work a lot with the younger trans community in practice. And even at this young age, when they’re still at high school, I talk about the importance of screening, that in a lot of cases, they’re starting their transition, but I talk about health that may affect them when they’re 25, when they’re 50. So they’re just aware of all these things that actually they may be missed. But they need to be, they need to be, up front and, and we should, as primary care, encourage them to come forward for these screening programmes.
Sarah: And whilst the cervical, they’re still invited nationally to, you get your letter, don’t you, from NHS England or whoever, for your smear test, rather than from your practice. It is a sort of nationally generated thing. I said, and what I would hope is that over the next few years, there will be some systems put in place nationally to capture some way of inviting these patients, and also to send more appropriate information because I think that some of the letters that you send out, if you’ve got a patient who’s transitioned from female to male, actually just sending out your general, you’re due your smear letter is probably not quite the right way to do it. And there are some letters around that you can use, but I think, again, it’s worth just thinking about that.
Rebecca: So there are specialist clinics as well that will support you as well, that will support patients who may need additional assistance, particularly if they’ve gone through bottom surgery, and even on discussions with members of the trans community. Trans women will still have a prostate, so it’s important that they are aware and us as GPs are aware as well. Okay, can we just discuss the case? We’ve talked a lot about barriers.
Sarah: This is a patient that you spoke to, isn’t it?
Rebecca: It was, yes. It was a patient with a physical disability. A lady in her late thirties with cerebral palsy, and she was wheelchair bound. And we had a conversation about screening programs, and she’s a real advocate of encouraging patients with a physical disability to attend. In a survey from Jo’s Cervical Cancer Trust, 88 percent of respondents with a physical disability said it was harder for them to attend appointments. So certain barriers… With this particular patient, I saw something that really stuck with me was she needs to get two buses to her GP practice and if that was for her smear appointment. As you’re waiting for the bus there’s only one area that a wheelchair user can use and if that’s already used, you have to wait for the next bus and maybe the next bus. So actually, you could end up being very late for an appointment. So just awareness of this, that actually it’s, it’s potentially been difficult for the patient to come. And the other thing was the width of doors going in, going into the consultation rooms, making things easier, having longer appointments for them to undress and actually going onto the…
Sarah: We’ve only got one examination couch that goes up and down, so actually that one is a lot easier if you need to help get somebody onto, but actually the others, they’re all quite high really, aren’t they?
Rebecca: I’ve got a mover.
Sarah: Have you? We’ve only got one in the whole building that’s got a mover on it, so you can actually, and you probably need, if you’ve got somebody with a disability, you might need somebody to help you get them on, you might need a chaperone for a bit longer or whatever.
Rebecca: The other thing about what, what the patient I discussed was the misconception that physically disabled people are not sexually active. So therefore they don’t need to have a smear test, which is completely untrue. And 63 percent of people during this Jo’s Cervical Trust Survey, which was done in 2019, said that there needs to be an improvement of accessibility of information. They also had a poor experience, maybe the first time, and it’s almost put them off for going again. So, we’ve also talked previously about making that first time special.
Sarah: There’s something about though, I think there’s, there was some, somebody was telling me just yesterday that there’s some data out that people who engage in cervical screening first time are more likely to engage in all other screening programs for the rest of their lives. So actually, that whole thing about, making the first time special…
Rebecca: I know it’s so wrong in so many ways!
Sarah: Yeah, but make, you know, making sure that it is not a negative experience. You know, I often say to people, people say, I’m worried about this. And I say, well, nobody comes in and says to me, they’re looking forward to this. And I would be a bit concerned if they did, but actually, you know, this is what we’re going to do. And this is how, you know, and this sort of thing. So I think that you’re not going to make it pleasurable, I don’t think, but you might, minimising pain and discomfort and anxiety, particularly because the other thing is, you know, actually, sometimes they say, well, the more relaxed you are, I know this is a really doctor-y thing to say, but the more relaxed you are…
Rebecca: It’s going to, the less it’s going, not hurt, but it’s not going to be as uncomfortable. Warm up that speculum, run it under a warm tap, put a blanket on, make sure the room is not freezing cold.
Sarah: I do a lot of nonsense discussion as well.
Rebecca: Talking about holidays and…
Sarah: Not necessarily holidays, but yeah, just…
Rebecca: Where they’re going out on Saturday night! You, you chat and, so making them feel comfortable and forget what’s happening. Okay. So, so I think the other thing, it was just another group of patients I just wanted to mention was patients who have experienced violence because it is similar with these barriers because a cervical screening test is quite an intimate, invasive procedure and if it can cause flashbacks, and it can cause a lot of anxiety and actually it may take a few appointments to gain the trust. There are a lot of very good support networks out there and, and, and I’ve also signposted to some of the charities as well to help. And it’s, it’s something that is out there and it’s for us to be aware that actually, any patients who have experienced domestic violence, rape, any kind of violence…
Sarah: Female genital mutilation.
Rebecca: Absolutely. Yeah. We might need to take longer to actually build up that rapport for them to have the, the test.
Sarah: And Wan-Ley was saying when we did the podcast on homelessness, that actually that group of patients can often find it difficult to come and, you know, and I don’t know how many patients you say, if you say you need to examine them, they say, well, I haven’t had a shower before I came. And so it’s those sorts of things as well, isn’t it? Just being sensitive to it and making sure that people, you know, it’s as easy as possible.
Rebecca: Absolutely.
Sarah: I think it’s one of the, you know, with all of these screening programs, I don’t think that anybody does look forward to them but they’re things that need to be done and I think it’s one of those things that it’s quite easy to put all of it off. Probably the bowel screening a little bit less because you can do it at home but everything else it takes a bit of effort.
Rebecca: There’s always something better to do.
Sarah: Yeah. Yeah. And, and, and I think it’s, you know, it’s quite easy to think, Oh, I’m not going to be able to get an appointment with the GP to have the screening done, or, you know, I’ve only got one afternoon off, or can I get an evening appointment or, and it’s, I think it’s more difficult for people who are in, on zero hour contracts, single parents, all of these things do make attending a lot of these appointments quite difficult. If you’ve got, you know, if you’re in your 50s and you’re invited to your breast screening, but you’ve got caring responsibilities. It does make it all quite difficult and I can understand why people don’t go. So I think that’s why all of these programs do have an opt in if you’ve missed it. So I think it’s quite important that we understand that so that we can say, well, actually, I understand that you haven’t been able to go. But. I think it’s still important for you, and if you do this, they might be able to give you an appointment at a certain time, or in a certain place, and some people would prefer to travel further for a convenient time, and some people, because they don’t have transport, would prefer just to go down the road, so I think it’s just being as flexible as we can do it within the constraints of the programmes that we don’t organise as much as we might like to, Rebecca! Just take over!
Rebecca: Just another job. Just to organise the National Screening Programme!
Sarah: One of the initiatives that we’ve got going in Greater Manchester, which is really good, is something called Bee Seen, Get Screened, which is an initiative to try and get big employers, or any employer really, to sign up to guarantee that their staff can have time off work for screening appointments and to promote screening within the workplace. You know, we’ve been talking about it for women under the age of 50, you’re only asking for something every three or five years. Men, nothing. And then, you know, men, nothing at all because bowel cancer screening can be done at home. It’s not a big commitment, but actually just that guarantee that if you do get a smear appointment at three o’clock in the afternoon, you can leave work an hour or two early to get to it is, I think, is really beneficial. So I think if we can get those sorts of initiatives across the country, it would be great.
Rebecca: That’s excellent. The other thing I was going to mention, which has completely gone out of my head now… is more for listeners to just maybe take away a statistic maybe from each of the screening programs because I think it’s a very strong message when you’re trying to encourage patients to go. So actually to say it saves a quarter of, you know, 25 percent of people are picked up via the screening program when they don’t have any symptoms. That’s quite a strong message. So it’s almost, so listeners, take something away because if you’re able to share that with the patients then they might actually think on and say actually I will, I will make it as a priority.
Sarah: Yeah, and I think the other thing is for each practice, we’ll have slightly different groups of people that they will know better than anybody else who their groups that might find it more difficult to attend screening or might be more reluctant are. And so, you know, we might say, well, you need letters in various different languages or videos or whatever. But I think individual practices and individuals and localities will understand their populations better as to what they might need to promote screening.
Rebecca: Yep, I totally agree. Okay, so we’re going to go on to some key clinical points because we’ve covered a lot today. but as we said earlier, GPs are in a great position. I’d say GPs and all primary care are in a great position to opportunistically support their patients in undertaking screening. You mentioned this, be aware of your specific populations who have a very low engagement with screening programs and the barriers they face. So work on that, and, and maybe do some in-house work to how we can do that. So in the cases we’ve talked about today, we’ve talked about patients who will have additional barriers to screening. So they experience the same barriers that are faced by the general population, such as embarrassment, fear, misconceptions, previous negative experiences, logistical barriers like appointment times, et cetera. But they also have things in addition to that as well that we just need to be aware of.
Rebecca: Thank you very much, Sarah. I’ve really enjoyed today
Sarah: I think you kept to only just over six and a half minutes!
Rebecca: I think I was nearer five! We’ll have to look back on the recording, but we, I also reined you in for FIT. So, you know, it’s just, it’s just our thing.
Rebecca: Thank you for listening to this podcast from Gateway C. We hope you’ve enjoyed this series. Please do continue to support this podcast by leaving us a review or rating wherever you get your podcasts. It really does help people to find us. We’re going to be working on some new content. If you’ve got any topic suggestions for future episodes, you can include these in your review. We’d love to hear from you and get your feedback. If you found this or other episodes interesting and helpful to your practice, please do share them with a friend or colleague. It really helps to spread the word. There are episodes covering topics like non-specific symptoms, childhood cancers, breast cancer and pregnancy, and lots more already on our podcast feed. We’ve got free national screening programme courses for bowel, breast and cervical cancer available on the Gateway C website. All referenced studies and guidelines are in our show notes. Thank you again for listening and thank you to our producers, Jo Newsholme from Rethink Audio and Louise Harbord from Gateway C. See you again soon.
Sarah: And you know that before that they had to collect three samples and keep them…
Rebecca: Yeah, and the compliance…
Sarah: Smear your poo on a bit of cardboard and keep it for three days. It’s just not…
Rebecca: Wow!
Rebecca: Hello and welcome back to season two of GPs Talk Cancer. I’m Dr. Rebecca Leon and joining me again through this podcast is Dr. Sarah Taylor. We are both practicing GPs and GP leads for Gateway C. We’re both passionate about diagnosing cancer early and in this podcast, we want to share our clinical experiences with you so you can make better, faster, and more confident cancer diagnosis in primary care.
So, there’s some official stuff to make you aware of. We know this podcast might be of interest to anybody, but it’s really aimed at primary care health professionals. And although all patient cases are based on real stories from clinical practice, they are fully anonymised with no identifiable patient data.
Gateway C is the free early cancer diagnosis resource funded by the NHS and is based at the Christie NHS Foundation Trust. GatewayC is a national programme across the whole of England, Scotland, and Wales. Register online to gain access to free interactive courses, documentary-style videos, referral maps and more.
So, today we’re going to sit down for a coffee, or a beverage of your choice and talk about national screening programmes. These will cover breast, bowel and cervical cancers. Hi Sarah.
Sarah: Hi Rebecca, how are you?
Rebecca: I’m okay. Nice to see you on this, uh, autumnal day.
Sarah: Sunny though.
Rebecca: Yes, it is sunny. How’s your couple of weeks been away from here?
Sarah: Yeah, nice, yeah, hot. I was in Sicily, so it was very, very hot, which is probably not very good for me, I don’t really like the heat. Um, but it’s better than the rain in Manchester, so…
Rebecca: Yes, it was a very wet weekend. Have you got your cup of tea with you?
Sarah: I’ve got my coffee that I’ve brought from home, and I think you’ve been investing in a fancy oat latte again.
Rebecca: Well, I’m a media city, you know, when in Rome! So yes, I think we’re ready to go. Today we’re going to do things slightly differently. We’re going to discuss the three screening programs separately. So as I mentioned, the breast, bowel and cervical or cervical. We’re also going to include some statistics. We’re going to talk about a case as well with each of them and actually talk about more specific barriers, which we mentioned as we go along.
So let’s start with breast screening and some statistics of interest. So breast cancer is the most common cancer in the UK affecting females. Screening finds cancer in nine out of a thousand women. And it’s estimated to reduce the number of breast cancer deaths by 1,300 a year in the UK. The breast screening program is for anyone registered with a GP as female aged 50 to 70, and invited every three years.
Sarah: I think it’s with that, it’s important to remember that they, the practices are invited every three years. So, if your practice has been invited for breast screening just before you’re 50, you might wait until you’re nearly 53 before you’re invited for your first screening. If you move, then you can sometimes miss things. There are ways to opt in, but I think it’s important to remember that it’s actually done on a cohort, practice by practice basis rather than the cervical and other things which are done as the opportunity arises.
Rebecca: Okay, and a further statistic is over a quarter of breast cancers are diagnosed through the screening route. As we know, Sarah, the breast screening programme, which is a mammogram, isn’t 100 percent.
Sarah: No.
Rebecca: What kind of problems can arise from the screening program and the mammogram itself?
Sarah: So, as you say, Rebecca, like any test, mammograms aren’t 100 percent reliable. Some of that’s down to the test, some of it’s down to interpretation of the test, because it’s not an exact science, and you can get abnormalities appearing on a mammogram that fortunately, don’t turn out to be cancer and that can cause quite a lot of anxiety for patients. Similarly, you can have a mammogram that looks… that is reported as being completely normal and actually if you look back further down the line, there probably was a small cancer there and that wasn’t picked up. That brings us on as well to talking about interval cancers, which are those cancers that happen between screening rounds, so the cancers that happen in the three years between when women are screened. Some of those, and I think around 80 percent of those, are actually new cancers that have appeared since the last screening, and so that’s one of the reasons that we have to be really clear with women and anybody who’s being screened, that if they get a new lump, they should still come and see us and the scan a couple of years ago isn’t reassuring. And then I think about 20 percent on, of those are ones where actually if you go back you can think actually it probably was there but we didn’t see it. So I think it’s just being aware of the positives and negatives of the programme are quite, is quite important.
Rebecca: I mean, they’re saying about 6, 000 women in the UK or in England will develop an interval cancer. So you’re absolutely right, Sarah. I mean, 20 percent of these 6,000 women, actually, they did not pick up the cancer on the previous screening. So, the patient was giving, was given a false negative when actually there was a cancer there. And around 80 percent of those 6,000 women with an interval cancer will have developed cancer between screening appointments. But there was no sign of cancer at their previous screening, so as you say, it’s all about us being vigilant and explaining to the patient to make sure that they examine their own breasts and any problems to be re-examined.
Sarah: The other thing that’s interesting is that the, you know, obviously we’ve said already that screening has, is very good for diagnosing cancers early, but actually the uptake of screening, it varies across the country and it varies in different groups and that’s one of the things we’re going to talk about. But it’s only around 65 to 70 percent in a lot of places and actually if you think that, see our UK are saying that 1,300 cases, 1,300 deaths a year are prevented by screening. If you actually got 100 percent uptake of screening, you would presumably prevent…
Rebecca: Nearly 2,000 probably, yeah.
Sarah: Yeah, which so I think that that’s where we have a role in primary care is to try and promote the uptake of screening as a way of diagnosing cancer earlier.
Rebecca: Any consultation, if they’re coming in for nothing relevant to the screening programme, but you can see that they’ve had a no show or they mention that they’re not going to a particular screening programme, talk to them about it. Use it as an opportunity to actually say to the patient it’s really, really important.
Sarah: And I think that there’s been some research, I think it’s one of the things that they thought with the bowel screening is that letters coming from your GP are more powerful than something coming looking like a circular from NHS England because people get a bit bored with official letters, don’t read them, whereas something either coming, either a text or a conversation or whatever from your GP actually has more impact. And not just your GP, you know, practice nurses, receptionists, everybody can help with that and I think it makes quite a big difference.
Rebecca: Do you use Accurx in your practice?
Sarah: We do, I love
Rebecca: Accurx is brilliant and we actually use Accurx a lot for this kind of thing as well. Because you get a text from the GP practice, they are going to maybe answer it and take it more seriously. I think you’re absolutely right.
So as, as part of the discussion around breast screening, I think it’s important that we discuss a case. Are you able to talk about that, Sarah?
Sarah: Yeah, so I saw, well, last time we had our patients at the practice, were screened from the practice, we became aware that actually when a couple of our patients who live in supported accommodation with learning disability just hadn’t attended and, you know, we had a bit of a chat with the staff about it and I think it was just, it was, it was difficult because the information was difficult for them to absorb. The staff didn’t really understand what was going on. But, but these people are just as at risk of breast cancer as anybody else. You know, we had a bit of a look around and there are some resources out there that you can direct to patients with learning disability. And obviously it just does depend a little bit on the level of learning disability as to what you can do but I think it’s important to think when you’ve got round of screening at your practice just whether there are some groups within your practice population who might need slightly different formats of information because I think that everybody, it was one of those things that makes me laugh a bit is that when it’s, you’ve got a letter at the bottom and it says if you want this in braille please call such and such and I think how are you going to read that? If you can’t see, why would you read the bit that says get it in braille? So I think we almost need to be a bit of a step ahead and think actually we’ve got this group of patients who might need it in this format. I’ve got this group who might need this format. What can we do to support those people? And possibly in, if you’ve got people, if you’ve got some, I don’t know whether you’ve got any patients in supported accommodation, maybe help with the staff as well to understand the reasons and to support them in getting patients to the screening vans.
Rebecca: Because patients with learning disability, they’ve got quite shocking statistics really, that compared to around 62 percent of patients without a learning disability, this was kind of 2021-2022, were presenting to breast, the breast screening program compared to patients with learning disabilities, it’s just below 48 percent.
Sarah: That’s not good, is it?
Rebecca: No, and I think you did touch on what primary care can do. You talked about the braille, large fonts, easy reading, and maybe a video format explaining what breast cancer, I suppose what breast screening is, that the support workers can support the patients with as well. So it’s for both. It’s for the patient, but also for the carers.
Sarah: Yeah, there’s some work that we’re doing within the Greater Manchester Cancer Alliance with some learning disability groups where they’re producing the information. So they’re sort of saying this is how we would want it, and this is what we would understand, and this is how we’d like it presented to us, which I think is a really good way of doing it, and I think if that works, we can start to expand that and do it for other things, because I think it’s very easy for us to assume a level of understanding or interest or whatever that might not be there.
Rebecca: You also mentioned in your practice that you use members of staff to actually be filmed and explain. And I think that was, that’s something I want to bring into my practice as well, because if they can see their practice nurse or one of the admin team or one of the doctors actually talking about it, it seems a lot more relevant than Mr. NHS talking about it.
Sarah: Absolutely.
Rebecca: So I think that’s, using focus groups I think is really, really good, but also members of staff that they may know.
Sarah: Yeah.
Rebecca: Let’s…
Sarah: Let’s move on to everybody’s favourite topic!
Rebecca: It’s your favourite topic! Let’s go on to bowel screening. So, some statistics. It is the fourth most common cancer in the UK. 12 percent of bowel cancer diagnoses were found through the screening programme. The screening programme also reduces a patient’s risk of dying from bowel cancer by at least 25 percent. Screening has been made much easier by the introduction of FIT in 2019, aka Sarah Taylor’s Mastermind subject.
Sarah: And you know that before that people had to have, they had to collect three samples and keep them, which I can understand why actually FIT…
Rebecca: And the compliance… Yeah, and the compliance…
Sarah: Smear your poo on a bit of cardboard and keep it for three days. It’s just not…
Rebecca: Wow! Going back to the FIT test, false positive and false negative results can happen, like any screening programme. There’s also an issue over overdiagnosis, so people may be diagnosed and treated for growths that end up being benign, that actually would not have caused harm. And this can be a fairly invasive test, through a colonoscopy and then biopsy. So Sarah, please tell us about FIT and how that compares to the previous test, the FOB.
Sarah: Can I tell you first who’s invited?
Rebecca: Oh, yeah. Sorry! Okay. I’ll tell, I’ll talk about the invited. So those invited to the bowel screening program is every two years and across England, Wales and Scotland and Northern Ireland, the age range will be 50 to 74 over the next year or so, but it will take time for everybody to catch up.
Sarah: Absolutely yeah. And you actually just get something through the post just around your birthday.
Rebecca: So…
Sarah: That’s a nice birthday present, isn’t it? You get to do your FIT kit. So I think when I was…
Rebecca: So Matt has just received his. He’ll be so pleased that that is live on air! It arrived, I think, at the beginning of the week. He was very excited.
Sarah: Yeah, Ben’s 15 days older than me, so he got his a couple of weeks before mine arrived.
Rebecca: How romantic!
Sarah: Birthday FITs!
Rebecca: Birthday FITs! I’m slightly…
Sarah: Younger.
Rebecca: Younger. I’ve got a few years to wait for mine. Okay, moving on. It’s always about an age thing with us, Sarah. Okay, so please tell us the difference or why fit has revolutionised bowel screening.
Sarah: So the, the FIT test is much better than FOB, as we said, because it actually, you only need one sample and it is much, much more reliable, so it makes it much more acceptable for patients to do. We’ve, we’ve talked on our episodes on bowel cancer about how to collect it, and we can go back to our mushroom containers, strawberry containers, chicken containers…
Rebecca: Can we just please just talk about that? I know we’ve talked about it on previous episodes, but I think it’s really important. How do you collect a good sample?
Sarah: Well, what I would suggest to patients is that they get a plastic container of some description, put some toilet roll in it, poo into that, and then use the stick from the bowel screening to collect the sample. As we have discussed previously, you don’t need very much, and actually, overfilling is quite a big problem. And you don’t want to, you know, you don’t want to be repeating these samples, really, do you? And you certainly don’t want to be at the end in the lab when the overfilled sample comes through. That’s not very nice. So, a small amount is enough. You just need to cover the end of the stick that comes with the sample pot, put it back in, and send it off. And because it’s only one sample, you can do it straight away, then obviously just flush everything away and chuck your container in the bin somewhere. I think the, the main thing that we really need to, there are two things that are quite a big issue, apart from the barriers to people actually doing it, which we’ll come on to in a minute. The other things to remember are that the bowel screening FIT, the level varies across England, Scotland and Wales. But in England at the moment, the level is 120. So you get told you’ve got a positive FIT with a level of 120.
Rebecca: That’s for the screening…
Sarah: The screening threshold. If we’re looking at a patient with symptoms, we’re looking at a level of above 10. And so therefore, if you’ve got a patient with symptoms, they should in no way be reassured by a screening test, even if it was two weeks before and we need to remember that. And the other thing that we need to just be aware of is that there’s quite an alarming number of patients who have a positive FIT, are invited for the next step, and bearing in mind that’s a FIT of over 120 in England and are invited for the colonoscopy and don’t go. And they’re at quite a big risk of having a bowel cancer and I think that we have quite a big role in primary care in encouraging them to go and have that done. I think they don’t go because they don’t want a colonoscopy, which you can’t blame them for.
Rebecca: Doesn’t sound fun!
Sarah: No, but actually you, you know, I think if you’ve got the positive test…
Rebecca: It’s almost if you embark on the screening program, see it through. That’s the thing. And I think it’s important for us as well in primary care to almost talk about all the steps, and you know, we’ve talked about PSAs in the past saying, what were we going to do if a PSA is…, you will be referred on for further investigations. Now, if your FIT is positive, the next step will be a colonoscopy. So it’s important that people don’t drop off the pathway.
Sarah: Yeah, I don’t think you should ever have a test done for reassurance.
Rebecca: Absolutely. Yeah. Cause what are you going to do with the answers?
Sarah: Yeah, absolutely.
Rebecca: Okay. So, we’re going to talk about a case as promised, and we’re going to look at another barrier. And this was a patient in my practice, who, his first language was not English, and, we have a fairly large ethnic minority community, and it’s been found that actually, within these communities, they have a lower participation in the bowel cancer screening program compared to white British adults. And there may be reasons for this. But health literacy is a, is a major factor. And you mentioned that you have patients also in your practice who literacy is an issue as well, and they’re almost embarrassed to share that, even with their closest family. And that can also be increased by potential language barriers as well.
Sarah: I think there’s also an issue, isn’t there, that in different cultures the idea of handling you poo, I mean it’s not an attractive idea for anybody is it, but no, but I think that there are some, some cultures and some groups who find that more difficult than others. And I think that that’s also needs to be addressed. And the other thing that’s a bit of an issue with this is that it’s not quite the same as, you know, with the breast, we were saying actually you could be proactive and you know your patients are about to be invited and you can go right, we’ve got this many patients who don’t speak, who need something in Urdu, and we’ve got this many patients who have a learning disability, we can send stuff out to them. Actually for the bowel screening, it’s all sent out, as we know, around our birthdays. And therefore you have to have a different way of contacting those patients. And you probably can’t do it proactively, you probably need to wait until they’ve not gone and you’ve got the DNA letters through and then contact them in a different way, which is just, it’s just a different way of doing things and probably not quite as satisfactory. I’d quite like to send them the right stuff at the outset. Unfortunately, I don’t think we have the power to do that.
Rebecca: So certain things we can do in primary care is… use of short letters or leaflets with alternative languages and maybe short videos associated with it with clear messages and asking the patients a bit like what you were saying with the previous group, with the learning disabilities, asking patients themselves which methods of communication works for them.
Sarah: Yeah, the other thing is if you’re going to be sending things out that are appropriate, you need to have recorded in the notes what is appropriate for the patient. So there are some people who will read in one language but speak in a different language. So you might want very simple written information in English, but if you’re going to produce a video or a piece of audio, it needs to be in a different language. And if so, you need to know what the preferred written and spoken language is and have it recorded in the notes if you’re going to be able to send appropriate information out to those patients, otherwise you can just send the wrong things.
Rebecca: Yeah, and I’m just thinking that the bowel screening pack itself, I haven’t looked in too much detail at it and I might as a bit of…
Sarah: Homework!
Rebecca: … as a bit of homework! Because I’d be interested to know the instructions actually in the bowel screening itself, how clear is that? I presume there are diagrams on how to fill it.
Sarah: Yeah, I think so, I can’t remember.
Rebecca: So it’s both our homework, Sarah. We’re going to open up a bowel screening test kit and just see if there’s any improvements from that end because actually we don’t get involved.
Sarah: No.
Rebecca: We get involved with the non-attenders. So it’d be, I’d like to see that. So weekend homework, Sarah! Okay. Can we go on to my specialist subject now?
Sarah: I suppose!
Rebecca: Okay, how long have I got, producers? No, they’re giving me like just a little amount of time.
Sarah: Six and a half minutes. Rebecca
Rebecca: And go. No, I’m going to rein this in today. So, the final screening programme that we’re going to talk about is cervical, cervical screening. And this is the 14th most common cancer affecting females in the UK. Cervical screening saves 5, 000 lives a year in the UK. It also prevents 70 percent of cervical cancer deaths. But 83 percent of deaths can be prevented if everyone attended regularly. So there’s still some more work to do from that. Since the programme started, cervical cancer incidence rates have decreased by a quarter in the UK. As we’ve discussed with the other screening programs, there are false positive and false negative results. The patient needs to be aware that if there is a positive test following the screening program, they will be invited to colposcopy to remove any abnormal cells, and there is always a risk associated with that. And just to overcome some myth busting as well, Sarah, that 22 percent f women believe that cervical screening, or it’s also known as the smear test, can also test for ovarian cancer. So…
Sarah: That always shocks me.
Rebecca: … we need to give them a bit of an anatomy lesson.
Sarah: Yeah.
Rebecca: Okay. But I suppose it’s that area, isn’t it? So it’s, it’s just for people to be aware.
Sarah: Yeah, and there’s a little bit of difference, isn’t there, in the way the systems work in England, Wales and Scotland. At the moment, in England, women are invited every three years from the age of 25 to 49, and then every five years from 50 to 64. Whereas in Wales and Scotland, they’re invited every five years from 25 to 64. There is some talk about that changing in England, but it hasn’t changed as yet, so we just need to keep an eye on it. The other quite exciting stuff about, because he was talking about how many cancers it prevents the screening, and I know we’ll come on to HPV as well in a minute, but I was just looking up – Australia are hoping to eradicate cervical cancer by 2035.
Rebecca: Amazing!
Sarah: You know, which is just 10 years… just over 10 years away, so that, that’s quite an exciting prospect, isn’t it?
Rebecca: Very exciting, yeah.
Sarah: For sad people, anyway!
Rebecca: For sad people, it’s exciting! I mean, to eradicate something that’s affected people for a long time is something very exciting. You mentioned about HPV, the human papillomavirus, which actually, again, is an interesting statistic. 98 percent of sexually active people will come across this in their lifetime. So I have patients that come, they’re mortified, they’re upset that they’re HPV positive, and it’s when you tell them that statistic that the majority of people will actually have it in their lifetime. But our, our, their immune system will get rid of it naturally. So it doesn’t, it’s not the end of the world if they’re HPV positive. However, can we talk about the HPV vaccine and also which common types of HPV, which can cause cervical cancer?
Sarah: Do you want to do that? It’s your specialist subject.
Rebecca: Oh, stop it, Sarah. Okay, I’ll talk more! So the two most common types of HPV, which causes 70 percent of cervical cancers. So 7 out of 10 cervical cancers are HPV 16 and 18, and these are the two strains that are used in the HPV vaccine, which is encouraged for secondary school girls, but it’s also now being rolled out for secondary boys as well. And the reason for this is HPV as well as, can be a risk for cervical cancer, it can be at risk for several other cancers including penile, anal, and head and neck cancers. Final thing about the vaccination programme is it’s great and the pickup is good because it happens in schools. And there’s also been a catch up for people who haven’t had it. But it’s important for primary care to be aware that we still should encourage patients to attend their screening appointments as well, not just because they’ve had their vaccine. That doesn’t mean because the 16 and 18 HPV types, are part of the HPV vaccine, but there are other strains of HPV which are picked up as part of the screening program. So it’s really important that they do show up.
Sarah: I think it’s a bit of a problem in that younger age group, isn’t it, that the women between 25-35 will, a lot of them will have been vaccinated and they think they’re not at a risk and we do struggle to get some of them in to have their smears done. So I think it’s something that we, yeah, we need to be making sure that people are aware of.
Rebecca: So, just a further myth busting, for the uptake in the LGBTQI plus community. The screening uptake is thought to be lower in this particular community because there was a misconception that for people who don’t sleep with men, they’re not vulnerable to the HPV infection. So therefore, a lot of lesbian and bisexual women feel that cervical cancer, they’re not at risk because they’re not going to catch the HPV infection.
Sarah: And there’s also an issue for breast and cervical screening with trans patients, isn’t there? In that people who were born female but have transitioned to male will not actually be called for screening, but may have, if they’ve still got a cervix, and if they’ve had breast reduction surgery, they still don’t have all of the breast tissue removed, so may actually need screening but won’t be called for it. So it’s quite, it’s quite a difficult one to work out how to negotiate because you can’t necessarily search for these patients on your lists to invite them. I think it almost has to be an awareness within the population and then a sort of awareness within primary care that if you see somebody come in and you’re aware that they’ve transitioned, you probably need to ask them about screening in a sensitive manner. And I know you’ve covered that in some of the work you did in the Cancer Conversation.
Rebecca: Yeah, and we talked earlier about the people invited to the breast, the bowel and the cervical screening is, it’s very, particularly the breast and the bowel, it’s a national invite. And, and particularly with the breast and the cervical, is anyone registered with the GP as female. So, it’s, we’ve had a few issues from both ways that people have been invited to the cervical program, trans women who haven’t got a cervix, and then we’ve got trans men who are being missed.
So, it’s… I, I work a lot with the younger trans community in practice. And even at this young age, when they’re still at high school, I talk about the importance of screening, that in a lot of cases, they’re starting their transition, but I talk about health that may affect them when they’re 25, when they’re 50. So they’re just aware of all these things that actually they may be missed. But they need to be, they need to be, up front and, and we should, as primary care, encourage them to come forward for these screening programmes.
Sarah: And whilst the cervical, they’re still invited nationally to, you get your letter, don’t you, from NHS England or whoever, for your smear test, rather than from your practice. It is a sort of nationally generated thing. I said, and what I would hope is that over the next few years, there will be some systems put in place nationally to capture some way of inviting these patients, and also to send more appropriate information because I think that some of the letters that you send out, if you’ve got a patient who’s transitioned from female to male, actually just sending out your general, you’re due your smear letter is probably not quite the right way to do it. And there are some letters around that you can use, but I think, again, it’s worth just thinking about that.
Rebecca: So there are specialist clinics as well that will support you as well, that will support patients who may need additional assistance, particularly if they’ve gone through bottom surgery, and even on discussions with members of the trans community. Trans women will still have a prostate, so it’s important that they are aware and us as GPs are aware as well. Okay, can we just discuss the case? We’ve talked a lot about barriers.
Sarah: This is a patient that you spoke to, isn’t it?
Rebecca: It was, yes. It was a patient with a physical disability. A lady in her late thirties with cerebral palsy, and she was wheelchair bound. And we had a conversation about screening programs, and she’s a real advocate of encouraging patients with a physical disability to attend. In a survey from Jo’s Cervical Cancer Trust, 88 percent of respondents with a physical disability said it was harder for them to attend appointments. So certain barriers… With this particular patient, I saw something that really stuck with me was she needs to get two buses to her GP practice and if that was for her smear appointment. As you’re waiting for the bus there’s only one area that a wheelchair user can use and if that’s already used, you have to wait for the next bus and maybe the next bus. So actually, you could end up being very late for an appointment. So just awareness of this, that actually it’s, it’s potentially been difficult for the patient to come. And the other thing was the width of doors going in, going into the consultation rooms, making things easier, having longer appointments for them to undress and actually going onto the…
Sarah: We’ve only got one examination couch that goes up and down, so actually that one is a lot easier if you need to help get somebody onto, but actually the others, they’re all quite high really, aren’t they?
Rebecca: I’ve got a mover.
Sarah: Have you? We’ve only got one in the whole building that’s got a mover on it, so you can actually, and you probably need, if you’ve got somebody with a disability, you might need somebody to help you get them on, you might need a chaperone for a bit longer or whatever.
Rebecca: The other thing about what, what the patient I discussed was the misconception that physically disabled people are not sexually active. So therefore they don’t need to have a smear test, which is completely untrue. And 63 percent of people during this Jo’s Cervical Trust Survey, which was done in 2019, said that there needs to be an improvement of accessibility of information. They also had a poor experience, maybe the first time, and it’s almost put them off for going again. So, we’ve also talked previously about making that first time special.
Sarah: There’s something about though, I think there’s, there was some, somebody was telling me just yesterday that there’s some data out that people who engage in cervical screening first time are more likely to engage in all other screening programs for the rest of their lives. So actually, that whole thing about, making the first time special…
Rebecca: I know it’s so wrong in so many ways!
Sarah: Yeah, but make, you know, making sure that it is not a negative experience. You know, I often say to people, people say, I’m worried about this. And I say, well, nobody comes in and says to me, they’re looking forward to this. And I would be a bit concerned if they did, but actually, you know, this is what we’re going to do. And this is how, you know, and this sort of thing. So I think that you’re not going to make it pleasurable, I don’t think, but you might, minimising pain and discomfort and anxiety, particularly because the other thing is, you know, actually, sometimes they say, well, the more relaxed you are, I know this is a really doctor-y thing to say, but the more relaxed you are…
Rebecca: It’s going to, the less it’s going, not hurt, but it’s not going to be as uncomfortable. Warm up that speculum, run it under a warm tap, put a blanket on, make sure the room is not freezing cold.
Sarah: I do a lot of nonsense discussion as well.
Rebecca: Talking about holidays and…
Sarah: Not necessarily holidays, but yeah, just…
Rebecca: Where they’re going out on Saturday night! You, you chat and, so making them feel comfortable and forget what’s happening. Okay. So, so I think the other thing, it was just another group of patients I just wanted to mention was patients who have experienced violence because it is similar with these barriers because a cervical screening test is quite an intimate, invasive procedure and if it can cause flashbacks, and it can cause a lot of anxiety and actually it may take a few appointments to gain the trust. There are a lot of very good support networks out there and, and, and I’ve also signposted to some of the charities as well to help. And it’s, it’s something that is out there and it’s for us to be aware that actually, any patients who have experienced domestic violence, rape, any kind of violence…
Sarah: Female genital mutilation.
Rebecca: Absolutely. Yeah. We might need to take longer to actually build up that rapport for them to have the, the test.
Sarah: And Wan-Ley was saying when we did the podcast on homelessness, that actually that group of patients can often find it difficult to come and, you know, and I don’t know how many patients you say, if you say you need to examine them, they say, well, I haven’t had a shower before I came. And so it’s those sorts of things as well, isn’t it? Just being sensitive to it and making sure that people, you know, it’s as easy as possible.
Rebecca: Absolutely.
Sarah: I think it’s one of the, you know, with all of these screening programs, I don’t think that anybody does look forward to them but they’re things that need to be done and I think it’s one of those things that it’s quite easy to put all of it off. Probably the bowel screening a little bit less because you can do it at home but everything else it takes a bit of effort.
Rebecca: There’s always something better to do.
Sarah: Yeah. Yeah. And, and, and I think it’s, you know, it’s quite easy to think, Oh, I’m not going to be able to get an appointment with the GP to have the screening done, or, you know, I’ve only got one afternoon off, or can I get an evening appointment or, and it’s, I think it’s more difficult for people who are in, on zero hour contracts, single parents, all of these things do make attending a lot of these appointments quite difficult. If you’ve got, you know, if you’re in your 50s and you’re invited to your breast screening, but you’ve got caring responsibilities. It does make it all quite difficult and I can understand why people don’t go. So I think that’s why all of these programs do have an opt in if you’ve missed it. So I think it’s quite important that we understand that so that we can say, well, actually, I understand that you haven’t been able to go. But. I think it’s still important for you, and if you do this, they might be able to give you an appointment at a certain time, or in a certain place, and some people would prefer to travel further for a convenient time, and some people, because they don’t have transport, would prefer just to go down the road, so I think it’s just being as flexible as we can do it within the constraints of the programmes that we don’t organise as much as we might like to, Rebecca! Just take over!
Rebecca: Just another job. Just to organise the National Screening Programme!
Sarah: One of the initiatives that we’ve got going in Greater Manchester, which is really good, is something called Bee Seen, Get Screened, which is an initiative to try and get big employers, or any employer really, to sign up to guarantee that their staff can have time off work for screening appointments and to promote screening within the workplace. You know, we’ve been talking about it for women under the age of 50, you’re only asking for something every three or five years. Men, nothing. And then, you know, men, nothing at all because bowel cancer screening can be done at home. It’s not a big commitment, but actually just that guarantee that if you do get a smear appointment at three o’clock in the afternoon, you can leave work an hour or two early to get to it is, I think, is really beneficial. So I think if we can get those sorts of initiatives across the country, it would be great.
Rebecca: That’s excellent. The other thing I was going to mention, which has completely gone out of my head now… is more for listeners to just maybe take away a statistic maybe from each of the screening programs because I think it’s a very strong message when you’re trying to encourage patients to go. So actually to say it saves a quarter of, you know, 25 percent of people are picked up via the screening program when they don’t have any symptoms. That’s quite a strong message. So it’s almost, so listeners, take something away because if you’re able to share that with the patients then they might actually think on and say actually I will, I will make it as a priority.
Sarah: Yeah, and I think the other thing is for each practice, we’ll have slightly different groups of people that they will know better than anybody else who their groups that might find it more difficult to attend screening or might be more reluctant are. And so, you know, we might say, well, you need letters in various different languages or videos or whatever. But I think individual practices and individuals and localities will understand their populations better as to what they might need to promote screening.
Rebecca: Yep, I totally agree. Okay, so we’re going to go on to some key clinical points because we’ve covered a lot today. but as we said earlier, GPs are in a great position. I’d say GPs and all primary care are in a great position to opportunistically support their patients in undertaking screening. You mentioned this, be aware of your specific populations who have a very low engagement with screening programs and the barriers they face. So work on that, and, and maybe do some in-house work to how we can do that. So in the cases we’ve talked about today, we’ve talked about patients who will have additional barriers to screening. So they experience the same barriers that are faced by the general population, such as embarrassment, fear, misconceptions, previous negative experiences, logistical barriers like appointment times, et cetera. But they also have things in addition to that as well that we just need to be aware of.
Rebecca: Thank you very much, Sarah. I’ve really enjoyed today
Sarah: I think you kept to only just over six and a half minutes!
Rebecca: I think I was nearer five! We’ll have to look back on the recording, but we, I also reined you in for FIT. So, you know, it’s just, it’s just our thing.
Rebecca: Thank you for listening to this podcast from Gateway C. We hope you’ve enjoyed this series. Please do continue to support this podcast by leaving us a review or rating wherever you get your podcasts. It really does help people to find us. We’re going to be working on some new content. If you’ve got any topic suggestions for future episodes, you can include these in your review. We’d love to hear from you and get your feedback. If you found this or other episodes interesting and helpful to your practice, please do share them with a friend or colleague. It really helps to spread the word. There are episodes covering topics like non-specific symptoms, childhood cancers, breast cancer and pregnancy, and lots more already on our podcast feed. We’ve got free national screening programme courses for bowel, breast and cervical cancer available on the Gateway C website. All referenced studies and guidelines are in our show notes. Thank you again for listening and thank you to our producers, Jo Newsholme from Rethink Audio and Louise Harbord from Gateway C. See you again soon.
