Bowel Research UK’s Patient and Public Involvement Manager, Sam Alexandra Rose, is joined by Emma Tuschick and Karen Manton. Emma Tuschick is a doctoral candidate and research associate at Teesside University, while Karen Manton is an expert in bipolar disorder based on personal experience. They are part of a research team investigating the experiences, thoughts, and emotions of individuals with severe mental illness and learning disabilities regarding bowel, cervical, and breast cancer screening. They discuss the barriers and facilitators encountered by people with learning disabilities and mental illness in accessing cancer screening. Additionally, they present some promising research findings that could lead to significant changes and improvements in the medical field.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it.
I’m your host, Sam Alexandra Rose. I’m the patient and public involvement manager at Bowel Research UK. And as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Well, hello everybody. Today I’m joined by Emma Tuschick and Karen Manton. Emma is a doctoral candidate and research associate at Teesside University. She is conducting research into the experiences, thoughts and feelings of people with severe mental illness and learning disabilities towards bowel, cervical and breast cancer screening. Karen Manton is an expert by lived experience with bipolar disorder and is part of the research team. So hi, both of you welcome to the podcast.
Karen Manton
Hi
Emma Tuschick
Hello. Hi.
Sam
So Emma, would you like to start by introducing your research? Just giving us a bit of a summary of what it is that you’re looking into.
Emma Tuschick
Yes, sure. Yeah. Thank you for the introduction. Yeah. So, as you said, we’re investigating how cancer screening services can be changed to help people with learning disabilities and/or severe mental illness, attend their appointment. So, I work with a number of people on the project, including Doctor Kate Sykes and Jill Barker, who are leading the study, Doctor Emma Giles, a wider advisory group, and experts by lived experience. So basically, the study came about due to Kate’s PhD where she explored the attitudes, perspectives and experiences of women with learning disabilities, deciding to attend and then access cervical and breast screening. However, it was evident from that study that the barriers and facilitators for women with learning disabilities, are not beneficial to only that population. So, I wanted to expand upon this. We looked at cancer screening for people with severe mental illness, including breast, cervical and bowel or colorectal screening, and we discovered that there were nearly 25% less likely to receive cancer screening and they actually tended to die, 15 to 20 years earlier than people without the severe mental illness. So, we didn’t know much about why some people with severe mental illness chose not to go cancer screening, or the barriers that they face. So, we decided to conduct a mixed method study to explore this a bit further. So, this included doing a systematic review to see what evidence had currently been done in the area. And found 20 papers from around the world which had explored it. We then conducted 27 interviews were people with bipolar disorder to ask them about their perceptions and experiences of cancer screening, and the barriers or facilitators that they faced regarding it. So, our experts by experience have been crucial… an absolute crucial part to our project, and extremely valued team members, at giving us advice, co-produce the documents, advised us on terminology, create a poster for us, and attended a conference and also helped recruit me. So, this is where I’d like to hand over to one of our experts. Karen. If that’s OK.
Karen Manton
Hi, yes, thanks for the introduction also. It has been great to be a part of the team and I do feel as I’ve been a very valuable Member as well, all along the way, we’ve been massively co-producing. It has been very, very led by lived experience and I’ve really enjoyed the part that I have had in it. And as Emma said, it started from recruitment with her, which again I was part of. And then every step of the way we’ve been involved with discussing any jargon that’s being used, you know, re… reviewing documents to make sure that they can be understood by members of the public. And it’s been really, really beneficial that they’ve had our input, and we feel that we’ve been really valued so, yeah, I’ve really enjoyed being a part of it and I do think it’s been a valuable experience.
Sam
That’s so great to hear that you’ve really, sounds like you’ve really had a proper partnership in this research, which is always, yeah, really, really good to, to hear and sounds like such an important issue as well, because the stakes are so high. You know, if there is part of the population that isn’t managing to get to this this cancer screening, then you know, that’s the difference between catching a problem early and managing to deal with it and then, you know, unfortunately and not having that opportunity. And yeah, just kind of… highlights the importance of screening for everybody and making it accessible and yeah. So, in terms of bowel screening then so, when we when we say bowel screening, first of all, are we talking about the kind of at home FIT tests, the sort of poop on a stick type thing, or are we talking about actually going to the hospital, getting a colonoscopy that, and that sort of thing. And for anybody who is listening and might not be aware, can you just sort of talk through what’s involved in in the bowel screen?
Emma Tuschick
Yes, certainly. So, there are a few misconceptions out there as to what bowel cancer screening actually is. So, some people might think it’s a colonoscopy. Some people think that you need to go to the hospital to get it done. And quite a few people have never actually even heard of it. So basically, when you reach the age of 60, up until 74, you’ll be offered bowel cancer screening every two years. If you’re registered with a GP, that is. However, the programme is expanding to make it available to everyone aged 50 to 59 by 2025. So, when this happens, you’ll be sent a home test kit, often known as a FIT test, with the instructions to collect a very small sample of your poo and send it back through the post box. The lab will check it for small amounts of blood, then send you your results a few weeks later. So previous to this, you had to collect three samples of your poo, however, now it’s only 1, so it’s much easier for people to do it. But the reason bowel screening is off… is because it’s the fourth most common type of cancer, bowel cancer, and screening can help prevent it, or find it at an early stage when it’s easier to treat. But about 90 out of 100 people actually don’t need further tests, but it’s obviously it’s good to get it done.
Sam
Absolutely, and it’s a bit of a difficult thing to do potentially, isn’t it? Because you know, there’s a stigma around… I mean as, we know, as a charity, we’re always trying to kind of break down that stigma and get people talking about their, their bums and their poo and toilet habits and all of that, that sort of stuff. It can be quite a- an embarrassing thing, but actually very important and actually probably not that bad once people do it. Yeah. So, thinking specifically about people with bipolar disorder, then, Karen, could you tell us some issues that people face or that you specifically face and what your experiences have been?
Karen Manton
Yes, so my recent experience came because I was presenting with some symptoms. And I think really the doctor just wanted to rule out that it wasn’t anything to do with bowel cancer, and so she did suggest the FIT test, and whilst I’m all for tests and I’m really keen to do it, I was nervous because I think you immediately think what’s gonna happen if it does flag anything up. So it was a worry, and I think the biggest concern was, having got it sent and having done it, was the time it took to get the results, and I wasn’t really aware that it did take at least two weeks, or for that period of two weeks I was panicking an awful lot thinking, oh gosh, something must have gone wrong and it was only when I rang the surgery and spoke to the receptionist, she said “Ohh no, this does take quite some time. Just be prepared”, you know, it could take a bit longer and it doesn’t mean that there’s anything wrong. So that was for my personal experience, I also had issues after I’ve done it and it was something so small, but it was even just being able to seal up the envelope. It wasn’t clear. I had my husband at home. I had my daughter, and we were all involved in actually trying to find a way that the envelope is actually sealed up in order to send it off. So, something as small as that just needs some simple instructions and but apart from that, people with bipolar, when these tests are sent out and they’re gonna be obviously sent out when you’re of that correct age, it is difficult sometimes because we don’t always know where a person’s at with their illness. If they’re managing and their illness is taking on quite nicely, the chances are they’re probably gonna get it in the post they’re gonna do it, they’re gonna send it off, and hopefully everything’s going to be OK. But we have to understand when you’re going through bipolar, we don’t know if that person who’s getting the test is actually in the middle of an episode. And if they are in an episode, and if they’re in sort of the manic phase, the likelihood is when that test comes in the post, it’s gonna go in the bin. And I know from personal experience that I just couldn’t deal with any post coming. And when I was that way and, very poorly, everything would get ripped up and I wouldn’t consider anything that come through the door. So, I think we have to be aware of that side, and in the same way, we also have to be aware that if they’re having sort of the depressive side of it. Again, they may not want to engage, so we have to look at all those kind of things. Those kind of factors that could prevent somebody from doing it. And I think we have to really consider that and how we can get around that.
Sam
Do you think that the GP could potentially do anything to work with you to help with getting the timing right?
Karen Manton
Yeah, well, definitely I do think if the GP is aware, which they, they can be and if there’s a trigger that lets them know, hang on, this test might not go plain sailing. Maybe they could have a little bit of a follow up they could… you know, contact the patient and maybe if they can’t contact the patient, how about contacting next of kin if this has already been agreed and on record, or perhaps the person who does the majority of caring for the person with bipolar just to say or are you aware they’ve had that test? Is there any way they can get it done so we can ensure with that you know everything’s OK? I do think things like that can be put in place.
Sam
Yeah, definitely sounds like that would be a good idea. And just going back to the waiting for getting results, I mean, yeah, that’s really difficult and I guess could potentially be exacerbated as well by you know, NHS has like longer wait times and backlogs and things like that. I’m not sure what the status is at the moment for bowel cancer screening specifically, but yeah, and that that can all all factor in and and it seems like a an even longer time, doesn’t it when when you’re waiting for those results?
Karen Manton
I think it’s better that it’s highlighted. Please don’t expect any results, at least for the first two weeks. So, then you can sit back and you’re not worried that it’s not coming because there’s a reason. So, it needs a bit of highlighting, really a bit of clarification.
Sam
Yeah, it’s that communication, isn’t it? And I sometimes find that a lot of my anxiety around medical things comes from, not knowing what’s going on behind the scenes and not having that that information. So yeah, the communication from the medical team I think is really important and could reduce a lot of anxiety. Absolutely. So, then Emma, what is it that you’ve discovered in your research so far? I mean is it… does that kind of line up with what Karen saying? Is that sort of, been other people’s feedback as well. And what else have people been talking about?
Emma Tuschick
Yeah, no, definitely it has it… It lines up exactly with what Karen’s just saying. So basically, from all the evidence that we’ve collected, including the systematic review literature, and the interviews, we have discovered quite a lot. So, looking specifically at bowel cancer screening, we found the common barriers include things like, hearing about other people’s bad experiences, the person not caring about themselves enough to do the screening, being too unwell with the mental health at that time, being too busy with other things to do it. So, for example, having other priorities at that moment in time, and a big one was feeling too embarrassed to talk about it or actually do it because as you were saying, it’s the poo thing, isn’t it? It’s not really talked about too much, so people… there is a bit of embarrassment around there. And other things such as like not getting any support and just a general lack of awareness about it really. But the things that have like sort of help people attend, I found to include things like good communication and relationships with healthcare staff, and hearing about other people’s good experiences, you know, like people saying, “oh, that was really easy to do” or “Well, that that wasn’t as bad as I thought” really helps. So, it’s really about promoting the good stories, and a good understanding or awareness of screening is crucial really, and just things like that you can complete it at home. So, you’re in your you… the comfort of your own home to be able to do it. And also recommendations from the doctor. So, we found that maybe doctors don’t recommend it enough but when they do that does have an impact. But yeah, the findings for bowel cancer screening actually quite there were some similarities, but they were quite different to that of breast and cervical, as the breast and cervical were more centred around things like the pain of the screening and how the screening staff were with them transport problems, you know, so actually getting there in the 1st place. Things like maybe having a male nurse do the screening and past trauma. But the things that they did have in common with the bowel screening, was really around the awareness and actual understanding of the screening and good communication. But the main difference was that, being able to do it at home was quite, you know, a great thing for a lot of people, you know, not having to think about ohh appointment times. You know, getting there and it just took a lot of those stresses away. So that was a big sort of facilitator for, bowel cancer screening was that fact. But overall though, we found a lot of barriers and facilitators, which are really going to help us in the next stages of the study.
Sam
Thank you. Yeah, that’s so much really rich information that you’ve discovered there. That’s great and and yeah, makes sense about bowel screening obviously, being different to cervical and breast screening because you have to go to the hospital and there’s different barriers there. I think I read the other day a headline about there potentially being cervical screening that you can do at home. I’ll try and maybe put a link in the show notes if I, if I find that, because that could be again something that’s really beneficial and yeah sort of hearing about people’s bad experiences is… my mind goes straight to the Internet for that one because there’s just… it’s such a double edged sword, isn’t it, the Internet? Because you can find people who have had good experiences and it’s all been fine. But also, I think that people often go online to talk about this kind of thing because they’ve had a negative experience. So, you get a bit of bias towards some more like negative information on the Internet, and then as well, if you’ve had a bad experience yourself then it it might, you might think ‘Ohh I don’t want to put myself through that again’. Also, embarrassment, I mean as we’ve said, it can be a difficult thing to do and it might be, I guess, that people are too embarrassed to ask their support network for help with this particular thing, even if they have a support network and, and maybe they don’t have a support network as well. So, I guess there’s disparities there too.
Emma Tuschick
Ohh definitely yes. So, the like it’s just because it’s where it is it’s… poo and it’s not something people like to really talk about, but yeah, I mean, it should be talked about more because it’s a natural thing, isn’t it? And we all, we all do it so… yeah.
Sam
Absolutely. Karen, just thinking about like other solutions, I mean, do you think that being able to see the GP, the same GP all the time helps with, with this kind of thing and, and building relationships, would that be something that would be beneficial?
Karen Manton
Yeah, I think continuity of care with the GP is massive for all parts of like my, my health and it’s the fact that you can build up a trust. So, if you are having any issues with even doing screening or anything like that, you can, if you have that trust in that one doctor and they know you, they really get to know you inside out. I mean my doctor, with permission from my husband, she can even discuss him, because she knows there’s sometimes things I worry about. And she’ll know by talking to me and they learn my fears. She’s going to help with my mental health, so I do think it’s important yeah, to see the same GP because you can take your concerns to that person and you’ve built up that trust.
Sam
Absolutely. And you mentioned your partner there as well, I guess having him involved in, in things and as you said before, having the GP being allowed to talk to somebody else on your behalf as well, it’s all helpful.
Karen Manton
Yeah, it works both ways and. And if he has anything going wrong, he’s already given permission for me to discuss. Because it might be a little thing, he has that I might or he might not be worried, but I’m probably gonna overly worry. Maybe just it might just be anaemia or something. But the fact that it’s shared and it’s just a, it’s like us apart network really. And the fact that the GP knows you both well, you know that continuity of care, just it can’t be beaten, it’s so important for mental illness.
Sam
So, what do you both hope that will eventually result of this, this research to help people with bipolar to get the cancer screening that they need?
Emma Tuschick
Yes. So, the studies future plans to take the recommendations that we create with the help of our experts from our findings, to a range of different people in the healthcare profession, to see what their thoughts are and see if it’s feasible or doable to actually implement those recommendations. So, for example, if we find that the majority of people with bipolar disorder would be more likely to attend the screening if the environment was more homely. So, maybe a nice picture on the wall to distract them, we would ask the screen and staff it if it’s possible that this could be done. So, when overall factoring in things such as like budgets, time, that kind of thing, and then after we’ve discussed all of the recommendations, we aim to sort of implement those that are doable, in as many practises as possible, and make it, sort of, more person centred. Well, I think another thing as well is that we also hope to create more awareness surrounding cancer screening for people with severe mental illness and learning disabilities. So that they’re more likely to better understand and want to attend or complete the screening as we know how important cancer screening is to save lives, you know it it’s crucial really. So yeah, that, that’s our hopes.
Sam
It’s really exciting to think that real life changes would come directly from this research and be able to have, you know, a real impact on improving people’s care. Yeah, it’s really exciting to me. What about you? Karen, what do you… what are your personal hopes for this?
Karen Manton
I have to say, I mean, the study’s been amazing because it was only yesterday that we actually all got round the table, and we thrash things out for about 3 to 4 hours, where we all put forward what we felt, were the barriers and how you know, these things could be made better, and we come up with lists and lists of things and that’s why we hope going forward, we can take our study forward and we can get out there and even us with lived experience can actually get our message across and say, look this is what we hope, and even if it is just the atmosphere of the room we’re in, can we just make… even if bigger things are gonna take longer to implement, can we just put the small things in place? Maybe a little bit of background music, maybe not so much noise going on in the room that we’re going, you know, into or waiting in. Just little things that I’m sure are changes could already be made and then, hopes for the future that we do hope that everything we’ve discussed that can take parts of that and think, well, you know, it might not be, we can do everything that you want, but we can certainly do lots of things to enable you to come for that screening. So, we can potentially break down those barriers.
Sam
Brilliant and is there a takeaway message that you have? What is one thing that you would like people to know about bowel screening and bipolar? Just to finish us off.
Karen Manton
Yeah, I want people to realise that, just because we have a diagnosis of bipolar disorder, we’re still important and we’re already going through our own battle and it’s out there. We know that the statistics are that the likelihood is there could be 15 to 20 years taken from our. Our expectancy of life, and based on that, if it’s because we’re not getting for that screening, then let’s help us to make it happen, because we are important and we do matter. We’re not hard to reach that, the way you think we are. And sometimes we just need a little bit of encouragement, and we just need a few things put in place and then that will allow us to have the same screening that everybody else can have.
Sam
Right. Thank you both so much. It’s been a really, really interesting topic. And yeah, I’m. I’m excited to see what comes of this study in, in the future. Thank you very much.
Kate Manton
Thank you.
Emma Tuschick
Thank you, thank you very much.
Sam
Thank you for listening to Can I Butt In. This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit bowelresearchuk.org where you can join our People and Research Together network or PaRT, read about our research campaigns and fundraising, or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.