Latest / Rad Chat / E220: Dr. Laura Charlesworth - Serious Mental Illness (SMI) and Cancer Care
Transcript
- Jo McNamara Rad Chat Host (00:00) Hello everyone and welcome to Rad Chat, founded by me, Jo McNamara. Naman Julka-Anderson (00:04) And me, Naman Julka-Anderson. Rad Chat is a forward-thinking global knowledge hub where healthcare professionals can advance their expertise in therapeutic radiography and oncology. Unlike traditional academic resources, we blend real-world experience, expert insights, best practice, and patient perspectives. Jo McNamara Rad Chat Host (00:21) We make advanced knowledge engaging and accessible, supporting continuous learning and professional development without compromising patient care or your personal time by providing insights into both technical skills and career development, helping you to progress confidently in your field and shape your professional future. Naman Julka-Anderson (00:38) Just to let you know, our episodes may contain sensitive and difficult topics that you might find distressing or triggering. Please consider checking out another episode. Jo McNamara (00:47) So this episode is part of the Living With and Beyond Cancer. Today we're joined by someone who is well known within the world of radiotherapy, Dr. Laura Charlesworth. Hello Laura, welcome. Thanks for coming on. Dr. Laura Charlesworth (00:59) Thank very much for having me. Jo McNamara (01:01) So Laura, tell us a little bit about yourself. Dr. Laura Charlesworth (01:03) Okay, so I'm Laura, I'm a therapeutic radiographer. I haven't worked clinically for quite a few years now. I've been working across academia, including education, research, a few different public health and policy roles. And my current sort of focus in my roles, I've got two jobs at the moment, both at York University. And I work as a health services research fellow. And I'll tell you a about some of the work that I'm doing. And I also work as an associate professor for radiography as well. Naman (01:31) If we go back a few years we have to ask why did you want to be a therapeutic radiographer? Dr. Laura Charlesworth (01:34) Yeah, that's a long time ago. So I spent some time trying to choose a career and I actually wanted to be a lawyer, which I don't think anyone would ever guess about me now. And I went into some work experience, which I do think just shows the true value of doing work experience because I hated every second of doing work experience in law. I think I envisaged it was going to be this really exciting, fast moving situation. I was just... Yeah! Naman (02:01) You thought Suits didn't you? That's all I'm picturing. Dr. Laura Charlesworth (02:04) Yeah, yeah, yeah, yeah. It was just a lot of paperwork and it was quite boring and slow and so I kind of went back from that and just started to think it was quite a good kind of... point to reflect I think on what I actually want to do. And so I ended up searching different health careers, looked at diagnostic radiography and therapeutic radiography, which I think is quite typical of people who are interested in radiotherapy but don't have kind of a personal health motivation to pursue that career. And yeah, just when I looked at the difference in those two careers I just wanted I guess more time to help people which diagnostic radiography typically having less time with a patient so yeah as soon as I found it that was it the plan was set and off I went. That was a lot of years ago though. Jo McNamara (02:51) And then you obviously transitioned into academia and research. What took you on that pathway? Dr. Laura Charlesworth (02:58) It definitely didn't happen intentionally, I think probably the first thing to say don't think if you'd have asked me in 2008, I think I qualified as therapeutic radiographer, if I thought I would be doing the things that I'm doing or have done the things that I've been lucky enough to do in my career so far, I would never have imagined that, especially doing a PhD. But I think what drove me to be interested in research is that kind of curiosity around why in a small country do we have such vast differences in how people experience cancer and the cancer outcomes that they experience? And so I actually started my sort of research journey looking at sort of a parallel public health and cancer kind of topic area and I looked at health inequalities in cancer care once one had actually received a diagnosis of cancer. And yeah, it's just quite interesting when you start looking into that as a topic, that it is huge and it is complex and yeah, there's just huge, huge disparities. And that then just gave me a bit of a passion to hopefully want to leave this career at some point, having done something that makes a bit of a difference to the people who, know, the odds are against them, I think is kind of the... honest way to say that. So that's where it sort of started and I've been really lucky to do some really great things and look at practice to Canada for six weeks to look at. how we support people to improve their health once they've received a diagnosis of cancer and just such a fabulous opportunity. Again, if you'd asked me if I thought I'd have that chance as a therapeutic radiographer, I would have said, of course, no one would believe that that was a good enough idea. But it helped me to think about the systems that we have for health here in the UK are the way that they are but they have to be like that because in other places they're different and it just helps you to think a bit outside of the box of what we're used to. Jo McNamara (04:55) And we have to do a big shout out, don't we Laura, to the Churchill Fellowship, which I know I was lucky Dr. Laura Charlesworth (04:59) We do. Jo McNamara (05:01) enough to get some money to also go to Canada and to do some research, as were you, and also Bev Harden. And I think she has also won a fellowship as well. So it's a great opportunity for anyone working in healthcare who wants to do a project to Dr. Laura Charlesworth (05:16) Yes. Jo McNamara (05:16) access some funding specifically for travel. So we have to do a big shout out to them. Dr. Laura Charlesworth (05:20) Yes. And they've, I think because we've had some AHPs who've done some great things that I don't know if they still do, but I know a couple of years ago they had a call specifically. When I went, I went with the Trust for Nursing I think it's called. So that was the kind of party that funded my fellowship alongside the Winston Churchill Memorial Trust. But now there's an AHP specific category and honestly the process itself is very interesting in terms of a kind of opportunity. It's the toughest interview that I've ever had because it's not about somebody... assessing your suitability for something. It's about someone believing in a little idea that you've got and you're very passionate about it and it's really kind of a bit gut-wrenching to be sitting thinking they might just think this isn't isn't worthwhile. So yeah, and they have some pretty high profile people who do the interviews. It's a good experience in itself, but then if you get awarded it, I think that's been the biggest kind of career, both professional and personal developmental thing that I've done to spend six and half weeks in Canada by myself myself traveling around seeing things thinking differently having that headspace to think about systems change and it's very good recommend it to everyone. Jo McNamara (06:30) This will make you laugh but I always remember because I went for eight weeks and I always remember my husband kind of said me on my way there you go have a lovely time and when I got back he was there trying to help me with my bag I was like I don't need help I don't need help Dr. Laura Charlesworth (06:46) Yeah. Jo McNamara (06:47) and he was like okay Miss Independent who's been away for eight weeks on her own Dr. Laura Charlesworth (06:51) Yep. Jo McNamara (06:52) it was hilarious he was like am I allowed to cook for you it was so funny. Dr. Laura Charlesworth (06:57) Yeah, and even now sometimes when I'm kind of working somewhere and I'll go and have dinner and just sit by myself, people are like, you confident enough to do that? And I'm like, yeah, I traveled from home to Canada and so I traveled, I got several flights in Canada by myself and that's what I mean about that kind of professional and personal development because it gives you the confidence to do that sort of thing. So yeah, highly recommend it. Naman (07:23) It's nice to hear about because I never heard about it until I met Jo and I was like this is amazing but I suppose when you are at university sometimes you don't always think they are for you at that time and actually it's important to highlight that you can do some of these, like go for these opportunities at any point in your career. Dr. Laura Charlesworth (07:39) Yeah, and I think, never talk yourself out of something because, I'm the first person in my family to go to university, I grew up in, not the most affluent area. When I thought about who might be awarded a Winston Churchill Travel Fellowship, I didn't think that would be me. But it was, and people like me, like us, can do that sort of thing. So you've got to just put yourself out there, which is the hard bit, and then someone else will decide. Naman (08:12) So talking about your research, Laura, why did you pick the topic? And I suppose even before you maybe go into detail, why should someone find it interesting. Dr. Laura Charlesworth (08:22) Oh, that's a tough question because I find it really interesting and I usually start a presentation with, this bit's really interesting, well it's interesting to me because I've committed six years of my life to it. Yeah, and I think if we're specifically about my most recent programme of research which is focused on people who've got a pre-existing serious or severe mental illness and then develop cancer. So yeah, I think I mentioned earlier that I'm really interested in that kind of health inequalities, the disparities, the why do some people experience care differently. And if you look at, I am definitely a qualitative researcher, so I like words and people and discussions, but the stats, the statistics do help us. And if you look at the statistics, I find it really interesting to want to explain that. So the best way that I try and engage people in this who are probably not engaged is that there's a bunch in London, that at one point in time I think there was a 12-year life expectancy difference between the north east and the south west of that one small tiny area of the UK. So if that's happening in one small area I want to know more about that and why. And so with the PhD, you have to have a very focused, narrow topic because you're doing kind of like pinhead specific research into something. And if I'm really honest, it took me about a year to work through ideas. There was a time when I wanted to do something about physical activity and cancer outcomes. And only when I started looking at, you know, where were some of the biggest gaps in outcomes. And as a result of inequalities, did I come across the population of people with severe or serious mental illness and it's you know it's really shocking. So if I tell you there's a 15 to 20 year difference in life expectancy for that population irrespective of cancer but they're 2.1 times more likely to die from cancer then I think that warrants understanding more and trying to do something about it. Naman (10:29) How would you explain a severe or serious mental illness to someone? Dr. Laura Charlesworth (10:32) Yeah. That's a great question because that's a really complicated question that even people who've worked in this field for a really long time and have loads more experience in doing that, but Naman (10:39) Sorry, I feel like I'm giving you really tough interview questions. I'm not meaning to... Dr. Laura Charlesworth (10:44) they're the important ones. There's loads of ways to define it and that is a problem in the research because you can't compare a body of research that's describing something differently. So sometimes it's described by specific diagnosis. So if I said to use schizophrenia, personality disorder, bipolar disorder. So sometimes we group severe or serious mental illness by a collection of disease types. That's complicated because what is in and out of that? group of diseases also changes but also because some people don't have a diagnosis or don't choose to get a diagnosis because there's different meaning and interpretations that come with that. Some people aren't engaging with health services to get a diagnosis and something I discovered which I didn't know anything about, I didn't know anything about SMI before I went into this topic of research which sometimes people are like why did you do this? Well I know some stuff about cancer so I'm alright with not knowing lots about SMI. But I hadn't realised that a lot of people or most people with a serious mental illness actually have multiple diagnoses. So if they are diagnosed, quite often have more than one group of diseases. So what I actually did for my PhD was actually describe SMI as a mental illness that is enduring in nature. they've had something affecting their mental health for a period of two years or longer that impacts on their day-to-day life. not stipulating how, it impacts on their day-to-day living and that they need to access mental health care services for that mental illness. And that was the diagnosis kind of description rather than listing specific criteria. And there was probably about four months of solid work that went into that and defending that Jo McNamara (12:37) you Dr. Laura Charlesworth (12:39) and there are definitely different ways of doing it. There is some work going on globally at trying to look at better being able to describe SMI. Jo McNamara (12:48) I always remember Laura when you were doing your PhD and you said it's a whole chapter, it's just a chapter, just trying to actually describe what it is that Dr. Laura Charlesworth (12:54) it is yeah yeah yeah Jo McNamara (12:57) I'm looking at. Dr. Laura Charlesworth (12:58) yeah and I didn't I didn't make it a chapter I made it a paragraph and then after my viva it had to be a chapter it didn't become a chapter but it needed to become much more extended because even if I got five people in the room who've got an extensive mental health background they would want to describe it differently. Yeah, lots that we could come to. Jo McNamara (13:17) So tell us a little bit about what you actually did then in terms of the qualitative research that you undertook with them. Dr. Laura Charlesworth (13:27) Yeah, can I tell you about two bits, one that's qualitative and one that's not? So my PhD came in two main parts. So the first part was the scoping review, which absolutely minimises the amount of work that was done because a scoping review sounds very superficial and it was really big and I really underestimated how big it would be. But when you're doing the PhD, there has to be something that positions the why are you doing this. So I always call it the so what scoping review. And the idea of that was trying to position why it was important to answer a research question on this topic. in its simplest form, the scoping review was why does it matter to explore? What happens to people when they've got SMI and cancer. So what are the outcomes? And I think the first thing that was really interesting about that is I looked at lots of literature and there was no single bit of literature that described the impact of having SMI and cancer from the patient's perspective or from the lived experience perspective. There are lots of retrospective studies where people have gone back and looked at different clinical outcomes, so cancer survival rates, disease progression free periods, treatment compliance, drug adherence, gaps in treatments, nothing about what it's like to be in that situation and how a patient or a person with lived experience or their family care might report on that. So I thought that was quite revealing. And then actually the data itself, I kind of already have alluded to some of the statistics, but that review showed that people with SMI and cancer die sooner than people who have the same cancer but don't have SMI. They're less likely to get guideline concordant treatments, they're less likely to get what I would describe as state of the art radiotherapy, so the more complex radiotherapy treatments, the newer chemotherapy drugs, combination treatments, they're less likely to get... interventions in palliative care, so where we're giving people nutrition or other interventions in palliative care, this group of people are less likely to get that. So actually when you start to piece all of those things together, you can see there's a mortality gap and you can understand why that's happening based on the fact they're not getting the right treatments why are they not getting the right treatments and that they're the kind of questions that were in my mind after I did the scoping review. that review is published, it's a couple of years out of date now and I think there is some new evidence out there so it would be quite a helpful thing to add to but what I'm confident of is that it won't have changed the overall picture it's just adding more evidence to what we already know. So then I followed that scoping review with a qualitative study where I interviewed people one-to-one, in-depth interviews with a least sort of question guide but nothing too specific or prescribed and asked people with lived experience of SMI and cancer who self-identified themselves as having a serious mental illness, who came forward and were interviewed. So I interviewed people from lots of different backgrounds in terms of their lives, their experiences, their ages, their... their SMI, their cancer, because I didn't sort of stipulate you need to have this particular cancer, need to have had this particular cancer type or anything along those lines. And yeah, always say that one of the sad things about the PhD is that you, don't get ever to describe how brilliant those people were as a group of individuals because you extract themes from a collective volume of data. But, you know, without sounding really cheesy, doing those interviews has totally changed my perspective on lots of things was probably the most impactful thing that I've done in my career because when do we ever get to do that? When as a health professional do we ever just get to sit and listen to somebody in a way where... I've got no agenda but just to listen and I did that for many hours and that's a privilege. So yeah, lots that I took from that and I don't know if you're going to ask me about the findings but I would like to tell you a little bit about those. Naman (18:03) I was just going to say very quickly, I watched you speak at UKONS. Obviously you were amazing, Dr. Laura Charlesworth (18:07) Yeah, okay. Naman (18:08) but I was sat next to a nurse consultant. I think when you rattled off some of the findings you can go into, I just thought it was pertinent to say she said straight away that... we treat prisoners better and that's always stuck with me and actually I've treated quite a few people who've been in prison who've come for prostate treatment or head and neck or whatever and actually you might take a name badge off but you do give them complex treatments, you do give them everything they need, send them away with stuff with medications but actually if we treated someone with an SMI it's not the same. Sometimes I don't even get a scan because the consultant might say yeah we don't think this is worth it so yeah sorry go into your findings now. Dr. Laura Charlesworth (18:44) Yeah, yeah, and I think, yeah, I mean, I don't quite know what order this will come out in, because I would say to people, we're at 90,000 words in the thesis, and that's always quite difficult to sort of summarise in a few sentences. just going back to how people sometimes respond when I talk about this topic, I did a presentation, actually, you were both at that at that conference too. And I basically said that one of the things that's clearly happening that there is some data on but we don't fully understand is this issue around people with SMI not getting the comparable treatment to somebody who's got the same cancer, all of the other things that we would take into consideration when we make a decision on what treatment someone has. And I was kind of positioning this as, you know, as questioning that, you know, why is that happening? Should it be happening? And are we doing that based on an assumption from a clinician, health professional, that a person can't cope or can't tolerate that or are we reaching that decision through shared decision making? And at that point I hadn't done my qualitative interviews so I was just putting it out there from the scope and review that there was something here to be explored. And a clinical oncologist came up to me afterwards and said, oh yeah, literally that happened last week or the week before. I had a patient who needed to have surgery which would have resulted in a stoma and then they would have needed to have, I can't remember if he said chemotherapy and radiotherapy, there's no way that he would have coped with that so I've just given him a short course of radiotherapy treatment. In that moment I just didn't really know what to say because it was almost like he was backing up the point that I was making, possibly just my own perception but it was almost like he was proud to tell me that he was backing up the point I was making. was like, no, this is a problem. You know, did you make that decision together with the person if they were, you know, able to have that conversation or bringing in their mental health team to support that shared decision making or did you just make it on their behalf, which is kind of what he was saying to me. And that's one of the kind of things that came out really from the study, the qualitative interviews is that people described having a particular treatment told to them. So things like, you know, I met the surgeon and he said, we don't need to discuss anything else, you just need to have this surgery. That's what I would do if I was you, that's what I would do. I would say if this was a member of my family. Other people who just were... not even involved in that decision about what treatment they might have, just told and given minimal information. So yeah, there's something happening in that space and I'm not working on it at the moment, but there's something, hopefully somebody out there who might be interested in doing this with me. I'm quite interested in thinking about how we look at clinician decision making. I don't for a moment imagine that anybody comes into that role as an oncologist or a radiographer or anybody else not wanting to do the best for the patient but it's just we haven't trained people to understand how to support this group of people and so that's one of the interesting things that came out. Naman (22:12) Just for people listening, they might be wondering is there a different consent form or is it the standard consent informed consent process? Dr. Laura Charlesworth (22:19) I think there's a different consent form. There's definitely something that we refer to as a best interests meeting if a person is deemed not to have capacity to consent. But I think sometimes the decision is just made before that actually happens. And one of the projects I'm currently working on is a small local study where we're looking at liaison between mental health and oncology and it just doesn't really happen unless you've got somebody who's got an interest, somebody who's working in oncology who's got a specific interest which is usually related to their personal life in mental health and then they might pick up the phone and say can I have some input about this particular person who you know who's coming to see me but yeah quite often I think it's just in the in the too hard to do box and I've been told that by someone working in that field that sometimes it's just in the too hard to do box so we just make a decision they're not going to have radiotherapy or whatever she said. Jo McNamara (23:13) We hear it so frequently, don't we, just about the kind of integrated care. It just doesn't happen. You know, the MDT sits within each of those specific sectors and you don't necessarily get the opportunity to kind of go across those boundaries, let alone if you go into primary, secondary, tertiary care. Like that's just next level, isn't it? Dr. Laura Charlesworth (23:34) Yeah, yeah, yeah. Jo McNamara (23:37) Laura, what was it? Because I know obviously you're interviewing these people. Was there anything that really you that you had never considered as a therapeutic radiographer. Dr. Laura Charlesworth (23:51) Yes, quite a lot of things. The standout group of things that I'll describe is about their exposure to stigma in the healthcare setting. And it really challenged my own thoughts because actually I... will have fitted into that at some point in time. I like to think I'm different now and I like to think I'm working on being better. But definitely, mean, the start of my PhD is a page where I describe having a person who came in for treatment who, back in the day, for those of us that can remember a paper radiotherapy treatment sheet, and on the front of it had this sticker with her name and her address. And then it just had, in capital letters, schizophrenic and two stars either side. And there was no other information, you know, this is actually when I thought back to kind of why I was really interested in this topic. There was no other information and you know, the long story short here is that we did absolutely nothing to think about that situation. I just... imagined that she was going to be the same as the last person who'd come into the treatment room for their treatment who didn't have schizophrenia. I don't know what it's like to have schizophrenia. I don't know what it's like to have schizophrenia and have cancer and have radiotherapy. I don't know what that feels like. I don't know what concerns that she might have uniquely. I don't even understand about schizophrenia and anything that I do understand I've taken from the media or from movies because that's my level of education that I've had as a newly qualified therapeutic radiographer in serious mental illness without having any personal experience of that. I say all the time I'm really ashamed to share that story. We didn't do anything specific to care for her. We were a bit scared because one of the things I think the media does around people with SMI is puts fear into us about our safety and I do want to tell you about my ethics experience so please give me a moment to talk to you about that because the misconceptions are just so inherent in everywhere and in everybody even in people who you wouldn't expect them to be. So there was a day with this particular lady where she put her hand on my face and I thought is she going to hit me and she said she told me that she loved me and she wanted to marry me and she wanted to give me a cuddle. I don't know that any other patient ever told me in my clinical career they wanted to marry me, loved me, or give me a cuddle. And she was lovely. And I hate that description because it makes me ashamed. It makes me ashamed of, I don't think I was the best radiographer that I could have been at that time. But you know, committed to a lifetime of making up for it, but that won't make a difference to her. So the stigma is everywhere. I think it's in our... I think it's where we develop our own beliefs and perspectives as health professionals, but it was so, it was across the whole cancer pathway. I don't really love using that description of a pathway, but just to kind of articulate this in a short space of time. So this group of people would go into, a health service, going to say primary care, a GP, just for ease, it was often different settings, and describe a physical health symptom. And it would just be dismissed because you've got schizophrenia, you've got bipolar disorder, I know that you really struggle with your mental health, is that why you kind of struggle into breathe, is this anxiety? And this happened repeatedly for so many of the people who I spoke to, to the point where... they were having to go to A &E to get diagnosed. Now, if I would show you some of the data, if we looked at stage four late cancer diagnosis and who those people are, there's a much greater proportion of people with SMI getting diagnosed late. And here is what is happening when they go in multiple times to see somebody about a physical health complaint. And... That really shocked me because I don't think when we see people in radiotherapy that we necessarily know what's gone before. And for some of these people, two and a half, three years of not being believed, of having your symptoms dismissed, that's what's gone before. And then we expect them to... be behaving a particular way and be warm and friendly and smile and sometimes people are angry and upset and actually this is what's happened, know, this is one of things that's happened. And so that stigma kind of, we call that diagnostic overshadowing. It's a known phenomenon where people are, have a symptom dismissed because it's misattributed to something else. And... So it happens right at the start before there's even a diagnosis, but then it happens all the way through. So there's then this sort of stigmatized approach to not having that shared decision making, the withholding of information. So it's too complicated for this group of people to be able to understand this information. know, people are making assumptions about that. So they're not getting the information, even when they advocate to receive that information, it is withheld from them. So information about different treatment options, you know, in some cases that own medical records, been with withheld from them, there were some really harrowing stories if I'm really honest I heard and one of those was a lady who'd had an eating disorder for a really significant period of time. I want to say she'd had her eating disorder around 35, 40 years that she'd lived with it and she ended up with a huge swollen abdomen. And of course that was just being put down to its malnutrition, its malnutrition. She was like, look, I've lived with this for years and something feels different. I'm in pain. I've got discomfort. Please, can you take this seriously? You know, this isn't, this isn't malnutrition. And she ended up being sectioned so that they could feed, would feed her. So she was sectioned under the Mental Health Act. And during that time, somehow they discovered that she'd got cancer, but they didn't tell her. So they withheld that from her for quite a long time because they made the decision that her mental health at that point superseded what she needed to know about her physical health. have to say, I obviously only got the perspectives from the people themselves and there will be a whole separate set of perspectives from the health professionals. And like I say, I always believe that people are doing things with good intentions, but you know, that's the kind of thing that's happening. That stigma continues into their treatment when they complain about treatment side effects and they're not relieved about those either and it continues when they try and advocate for you know, I need mental health support. Well, you've got a psychiatrist, so why do you need more mental health support? And not enough time to talk about it now, but the history of mental health care has changed very significantly for people. And there's definitely a feeling from people with mental, serious mental illness, that they only get support for two things. They get support for their medication review, which is what they see their psychiatrist for, which is a short appointment. Have your med reviewed, see you later. Or they get seen if they're in crisis. So that's the stigma for me was one of the it's one of the one of kind of four categories of main findings but it's the one for me that just really shocked me because it is completely embedded through everything to do with cancer for this group of people and I think that's making a huge difference to the outcomes that we see. Jo McNamara (31:03) I imagine as well if you compare it to other health conditions, you know like diabetes, you wouldn't wait for diabetes to become so bad that that person then has to, you know, have a severe intervention. It's just, it's absolutely crazy just how... insufficient the support is for patients when you know that actually anyone with a severe mental illness is obviously going to need more support going Dr. Laura Charlesworth (31:36) Yeah. Jo McNamara (31:36) into a treatment pathway and yet we withhold it even more so than other patients. Dr. Laura Charlesworth (31:42) Yeah, yeah, because like I... Quite often they know that they are going to need help, so they try and advocate for that really early on. The things that happen in that space is that there's an assumption, I think, in oncology, and again, this is very true of me and my experience. I would assume that somebody who's got schizophrenia is getting a lot of mental health support because I don't understand the model of mental health care. And many years ago, it was more like that. People did have a caseworker or a specific person who they saw very frequently and interacted with very frequently. Now there was only one person who I spoke with who had quite a complex set of circumstances both health and socially and otherwise who had that. But I would have made an assumption that people were accessing that and I probably wouldn't have done much about finding that out. So then if you find out that they're not accessing that, what's our typical approach in radiotherapy is to signpost people to the Macmillan Centre or the local version of that quite often those services, brilliant as they are, and they do a lot of great things for a lot of people, are that kind of less complex set of mental health challenges that come with a cancer diagnosis, so are you, have you got some anxiety, some depression, some fear of recurrence? All of those things can be managed in those settings with that sort of level one and two support that people are trained to be able to help with. But as soon as you say, well, I've got schizophrenia, it's kind of scary for those people who then say, can't help you. So again they just fall straight through that gap. Now there are some places that have specialist psychological support but there's a huge huge variation in that and they're few and far between those people. Naman (33:22) As a researcher, how do you not try and fix everything when you come to the end of a study? There's so much here, although we could probably talk for a few hours more. Dr. Laura Charlesworth (33:28) There is. There is. Totally. Yeah, I think I'm working on trying to understand what's achievable for me and what other people might do. I do want to do it all. I want to understand it all. I want to fix it all. And I had a really good mentorship conversation a couple of weeks ago with somebody in America who said, I said, these are the things I want to do. And she told me, and it's the most revealing thing someone said to me for a lot of years. She said, stop trying to prove there's a problem here because you've done that, we've done that, like there is a problem, everyone can see it, we don't need to prove it anymore. We now need to, it's like your legacy needs to be doing something about changing this. So that's what I'm currently working on. I'm currently working on a... a new model or framework of care for radiotherapy, starting with radiotherapy for people who come in who've got SMI. And I know that no one's come in with the Calvary with a whole set of workforce or money, so it's thinking about how can we just think a bit differently, put some small changes in place and have something that's better for people. Hopefully there's, you know, trying to bring people on that journey with me. So I've definitely, I've put that out actually to the radiotherapy workforce and I've got about 10 people who want to come and talk to me about that. so yeah. And I think starting somewhere and doing it well and doing it properly and understanding what works and then moving to the next thing, the next thing and taking people, taking people with me so that we can all do something. And I always say to people is when I talk about this, you know, there's not, there's not a lot of good stuff in there if I'm really honest, this isn't a great situation, but anything we do will make things better. So we don't have to have multi-million pound investment, we just need to give people a bit more time and understand the assets that they bring to their own care without making an assumption that they don't have any. That's stuff that's within our gift to do, I think. Jo McNamara (35:33) Laura you mentioned about ethics, did you want to take us into that? Dr. Laura Charlesworth (35:36) I do, I do, this is where Laura gets angry. Talking about the misconceptions and where people take their understanding from about SMI. When I applied for my ethics for the university, it was just pre-COVID and I wanted to go and interview people in person because I thought I'm going to ask them to talk to me about very stressful, traumatic situations, very complex things, things that come with a lot of emotional labour. I want to do that in person so I can... offer some, at least some, I don't know, some more support. It felt better to do that via doing it over Teams, especially in that new world of Teams when we weren't using it a lot. And I submitted my ethics application and it got rejected. And it got rejected because they wanted me to put more detail in there around safety. So I was like, okay, that's clearly about the safety of the participants, right? Because that's what ethics is, it's about protecting people. So I put all of this extra stuff, I did loads of extra research, I did some extra training about my ability to do consent, all those things, and it got rejected again. At which point we asked for like a discussion because I'd addressed everything that I thought that they had asked me to and you know. My supervisor said she thought it was very strong anyway in that regard so it was kind of a bit like I don't know what else I can write in here and you still rejected it. So we went to a panel meeting and one of the panel members said, the thing we're concerned about here Laura is that one of these people might follow you on the bus on the way home and stab you. They were the actual words that came out of the mouth of people who were in a privileged position of reviewing ethics applications for health research. yeah, that and I was basically told at that point to change the study and I needed to change the study to do the research with health professionals rather than do the research study with people with lived experience. But because I'm very stubborn and very angry I was like that's a no so I either don't do the study or I do the study with people with lived experience and after a bit of a period of reflection my director of studies suggested that they got another person who had some experience of working in complex mental health who literally was like this is a sound application and signed it off in about 20 minutes but I could this goes back to the stigma because this is why people with SMI don't participate in research. It's not because they don't want to or it's too hard for them, it's because we don't let them because we're doing stuff like this. And I just, at some point I'll write a commentary or something on it because I can't believe that that still happens. But it does. Jo McNamara (38:35) And it's the interlinkage, isn't it, between the social issues that come alongside SMI as well. It must be so, so challenging for those patients, let alone then adding the complexities of having a cancer diagnosis. Laura, from a perspective of a healthcare professional, I have no doubt that those listening will, there's no doubt about it, will be affected by the things that you've said going, oh gosh, you know, I had experiences like that where I've maybe had unconscious or conscious bias towards people with SMI, what do we need to do? What do we need to change? What are some of the simple things that maybe people can undertake as part of their continual professional development to make things better for their patients with SMI? Dr. Laura Charlesworth (39:24) Yeah, yeah, I mean, the first thing I'd say is just find some information out about SMI and what it is and what it isn't and that it's a collection of diseases and they're all different. And people with SMI are often very stereotyped to be socially deprived people with this, that, they smoke, they drink, they don't, that is not, you know, that there is prevalence of those things in the population as a whole, but individual people don't present to us like that. So I think challenging some of their own assumptions by doing some reading and there's stuff out there to read. Not that I'm suggesting people should just read my work, but I have written a paper on stigma. I have written a paper on understanding that this group of people actually are probably more resilient than the general population and actually they come with all of those resilient strategies, but we don't let them use them. So hopefully that might just help people to think actually if they are trying to self-advocate and they are asking for information and they have got these strategies to help them cope, I just need to be enabling to let them use them. So yeah, think some reading is the first thing. The second thing I think is, I haven't really talked about the holistic needs assessment, but that was a really strong feature of what came up in the study. So brilliantly, every participant I talked to described the holistic needs assessment. They obviously did a call at that. you know, back when I started in clinical practice, that as a goal was, you know, amazing. The fact that we're achieving that and people are having this discussion, this conversation, but it's not meeting their expectations. So you've asked me about all these things. I've told you I've got complex psychological needs. I've told you about all this trauma. I've told you I'm going to need help and I've come out of it with a blue badge or a parking discount ticket know, expectations don't marry up. I never, I don't think in my whole career as therapeutic radiographer clinically, saw a holistic needs assessment. And that's where we might find out that there's a person has some area where we could help to signpost them to, or at least open some conversations with. So yeah, just be curious, be interested, ask. Look at the information that you've got presented. If you don't know where to get help, you know, there will be somebody around you who knows where the specialist psychiatric teams are or how you might get access to those. And people want to help when you ask them. we just don't have, at the moment, we don't have the framework in place where that is normal practice. But it is for other things, isn't it? How many patients did I pick up the phone and call the dietitian to in my time as a therapeutic rate author? Many, many, many. So we've just got to move to it becoming normal practice. So a bit of personal education, a bit of just taking the effort to care for a person as an individual and look at the information that might be available about them and to do something and not be scared to have a conversation. Naman (42:20) I think anything with health inequalities is also, you need to give a shit. All these people need help. Like people Dr. Laura Charlesworth (42:24) Yeah. Yeah. Naman (42:26) want to get into health inequities, inequalities work. They start reading something, go, actually, this is quite big. So yeah, these are strategically undervalued communities, people, human beings for decades, if not centuries. And like, if you get into Dr. Laura Charlesworth (42:34) Yeah, yeah, yeah, yeah, yeah. Naman (42:39) it, obviously speaking from experience, it's hard, it's exhausting, it's tiring. Not everyone cares. And actually the people Dr. Laura Charlesworth (42:42) Yeah. Yeah. Yeah. No. Naman (42:46) you think should care, they're probably the least likely to care because it's more Dr. Laura Charlesworth (42:49) Yeah. Naman (42:50) just about tick box. Yeah, I've done a little bit. That's it. Someone else's problem. Laura, you're doing it. Great. I'll just I'll watch you from here. I don't need to get involved because then it's also about the comfort zones of, well, I don't know enough, but if I show that to other people, then I look like a worst researcher or, yeah, clinician or whatever. It's yeah, it's such a delicate, like fine line as a researcher anyway. But yeah, just health inequalities. It's fun. Dr. Laura Charlesworth (43:12) Yep. Yeah, absolutely. And it's structural, isn't it? know, me going in and saying, can we just make this change? You know, I've already outlined how the stigma is just completely embedded in every bit of everything that happens. You know, that's really complicated stuff to... to do differently and that makes me really sad some days, it makes me really sad some days, it's really disheartening I think to think I can't fix this and I know you all feel the same and that we can do our bit for our area that we're really passionate about but I can't fix the whole thing and every now and then I'm like why am I bothering? Which is really awful and then I'll have a conversation with somebody and I'm like that's why I'm bothering it's tough because it's huge. Jo McNamara (44:11) Laura, in terms of the future, you've mentioned a little bit of the work, but what else are you doing? What else can we expect from Dr Laura Charlesworth within radiotherapy and oncology? Dr. Laura Charlesworth (44:25) So I've got a couple of projects that are under review at the moment, one which is about lung cancer screening and SMI. So would it surprise you if I told you that people with SMI are... more likely to get lung cancer and that's mostly because of smoking prevalence. Like I've said, not everybody with SMI smokes but there is an association. But we don't actually use SMI status as part of screening people who come for lung cancer. So I'm looking at doing a local project about looking at an engagement pathway for that. I've got an interview for that next Wednesday. So I've been shortlisted so let's be positive about that. And I think if we do that work locally, because lung cancer screening is quite new, it's not new but it's new to some extent for the NHS stuff, then there might just be scope around thinking about how does that apply to other areas, so that's one thing. I also have a project that's been submitted about thinking about... of what happens when people have got what we would describe as multi-morbidity. So every single extra illness or disease that you add on, just the outcomes get worse and worse. So currently looking at mental health, obesity and cancer. So I'm waiting on an outcome for a grant application for that. And then I'm working up the application for this kind of framework for radiotherapy for people who've got SMI and radiotherapy. if there's any oncologists that are going to listen to this, please can you get in touch because I'd really love to work with you and anybody with lived experience. Please get in touch. I've already got a little army of therapeutic radiographers I mean that more than area but they have come forward which is great and they're the kind of main things at the moment and And then I'm doing other bits and pieces and trying to drive change in other little ways. Naman was at an event last week where I was trying to get people to think about the importance of embedding lived experience in everything that we do so I'm trying to kind of do bits in other ways too and I've been doing some of tour around the UK talking about this PhD study which is going to have to stop at some point but I'm pretty sure there's at least 1 % of the population of the UK now that's heard me talk about this. Any opportunity? Jo McNamara (46:34) Well, it's definitely worth listening to. So Laura, just to finish off, always like to end with either top tips or take home messages. Is there anything that you'd like the listeners to go away thinking about? Dr. Laura Charlesworth (46:51) I'm going to say, because I've already done a little bit around things that people could do which can be, they can translate into tips. I think the take home is do something. because it's better than doing nothing. know that every bit of the pathway, we've got huge improvements that we can make. It doesn't matter where people are working or contributing to, doing something is likely to improve outcomes, either experiential or clinical for this group of people. So anything's better than nothing is what I'm going to leave with. Jo McNamara (47:30) I definitely think we could talk for hours. So we'll definitely have to have you on for a second episode to kind of do a follow up on all the project work that you're doing. But a huge thank you to our guests, Dr. Laura Charlesworth for talking about her research on the lived experience of people with severe mental illness and cancer. Thank you all for listening to Rad Chat with myself, Jo McNamara and Naman Julka-Anderson Thank you very much. Jo McNamara Rad Chat Host (47:55) So what do you do now? Well you can use this episode as part of our free continual professional development accredited content which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources and link to the completed form to receive your accredited certificate. Naman Julka-Anderson (48:14) Stay up to date with the latest radiotherapy and oncology advancements by liking and following us on social media and hitting subscribe wherever you get your podcasts. Jo McNamara Rad Chat Host (48:24) Please do join our supportive community designed by professionals who understand the unique challenges of working within radiotherapy and oncology. Follow us across all of our social media channels and make sure to check out our website www.radchat.co.uk. Together we're actively working to improve our profession and make a lasting positive impact on cancer care. Naman Julka-Anderson (48:47) It goes without saying that we can't achieve this alone. It takes all of us working together to create real change. That's why we value every voice and every contribution. We ask that you listen and learn and spread the word, share your story with us and connect with us. Jo McNamara Rad Chat Host (49:02) And if you have liked this content, why not buy us a coffee? Go to our website and drop us some love. Thank you all for listening and take care.