Bowel Research UK’s Patient and Public Involvement Manager Sam Alexandra Rose is joined by Steve Clark to discuss his research into the “nocebo” effect. Steve was diagnosed with stage 4 colorectal cancer in 2013 and has since become an active patient advocate. In 2017 he set up StriveForFive.org, a not-for-profit organization with the mission to give hope to fellow patients with stage 4 cancer. Steve and Sam talk about the nocebo effect – the idea that environmental influences or ideas could negatively impact treatment for cancer and other illnesses. You can read more about the nocebo effect at the link to the whitepaper below.
Steve’s whitepapers:
Patient Centricity to Integration: Enhancing Cancer Outcomes
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.
Hi everybody. Welcome to today’s podcast where we’re talking about an interesting concept. You’ve heard of the placebo effect, but do you know about the nocebo effect? What is it and how can knowing about it set patients up for treatment success? Here to explain his research around this topic and dig into it all with me is Steve Clark.
Steve was diagnosed with stage 4 colorectal cancer in 2013 and has since become an active patient advocate. He’s a regular speaker for audiences of patients, healthcare professionals, researchers and industry representatives, as well as volunteering with charities. In 2017, he set up StriveForFive.org, a not-for-profit organisation, with the mission to give hope to fellow patients with stage 4 cancer and to advocate for improved care for those with advanced cancer. So Steve, welcome to the podcast.
Steve
Hey, Sam, it’s good to be here.
Sam
Lovely to have you. So, did you want to just tell me a bit more about yourself and how you came to be sitting with me today?
Steve
Sure. Well, as you mentioned back in 2013, I got diagnosed with stage 4 colorectal cancer. Leading up to that, I was a fit and healthy guy. You know, a successful professional. I’ve got a background in working for the NHS as a biochemist and working in the pharmaceutical industry both in-house and as a consultant on a national and global basis. So lots of success, things going on and you know, a very active person. Like I say, I was a competitive runner. And a mixed martial artist as well. So kept myself in good shape. And then out of nowhere, I got a bit of bowel upset and was diagnosed immediately with stage 4 colorectal cancer. I went into my treatment, got surgery and chemo. Everything was very successful with me. And I’ve just celebrated 10 years with the disease. So that’s a a big success –
Sam
That’s amazing. Yeah.
Steve
And I had a big party called Tenacity to celebrate it. But since the diagnosis I’ve gotten more involved on the patient advocacy side of things as you mentioned. Initially that was on the on a patient forum for Bowel Cancer UK. And in that I started to realise just how much difference in care was being offered to people in different parts of the country and different types of hospitals, etcetera. So the different experiences that people were getting. And then over time as I got into that more I started to get involved more with other charities. More recently with Bowel Research UK. And I started to notice through these disparities that there were ways of improving things. That led to Strive For Five, as you say, something like 7 years ago. Originally that was just me charting myself getting to five years. As to help to say to people who are newly diagnosed with a disease, “it can happen”. Because you know, you go onto the Internet and I’ve listened to some of your podcast. You talked about this. If you’re diagnosed, you hit Google and you get scare stories and you get, you know, the dreadful news. And so I just started posting about the fact that, you know, I’m approaching five years marking that. And that was the idea. It was expected to be a six month, twelve month project. But the response to it was really strong and people were looking for hope. And so Strive For Five has continued now as a not-for-profit campaign to share hope for people with stage 4. And then that in turn has expanded in terms of other work and over the past few years, I’ve been giving a lot of talks to medical audiences about the need to improve communication skills. And I think for every chronic disease and many acute diseases as well, it’s important that doctors speak to us using the right language and the right tone of communication etcetera and all of that ultimately led to me stumbling over the nocebo effect. As preparing for a meeting earlier this year and since then, there’s been an incredible amount of interest in it and that’s why we’re chatting today.
Sam
Brilliant. And I mean congratulations, if congratulations is indeed the right word, on 10 years, it’s just incredible and you’ve you’re so active and doing so much, it’s really great to see your passion for advocacy. Tell us more about the nocebo effect then. So I did swipe off a definition of the placebo effect just for a bit of of context, I mean at the beginning I said you’ve heard of the placebo effect and obviously it’s a play on words. So the information I stole from the Internet is “the placebo effect is when a person’s physical or mental health appears to improve after taking a placebo or dummy treatment.” And then because I like words, this quite interested me – placebo is Latin for “I will please”. Yeah, I quite like that.
Steve
I didn’t know that one. I like that.
Sam
Yeah, “and refers to a treatment that appears real, but is designed to have no therapeutic benefit”. So that’s what a placebo is. And then I guess the nocebo effect is, in a way, the opposite of that. Can you sort of explain that to us a bit more?
Steve
Well, I need to now look at the Latin origin of the word, which I haven’t done, but I would almost guess it as being I will displease, given the context of it. So yeah, I mean. Probably this a lot of this, I think is mindset. Some people get turned on by the idea of talking about mindset with medicine. Some people think it can be a bit threatening and a bit woo woo. But it’s there’s a lot behind it and a common thing I got, I get from patients that help to support through their diagnosis is there’s no evidence that a positive mindset makes a difference in medicine. And the placebo effect is the proof that a positive mindset can have a good effect. And you’re quite right. So the, the, the way and the positive effect is probably one of the best known facts in medicine. It’s well proven, well researched and talked about everywhere. Think most people, most lay people know about the placebo effect. Yeah, and it’s baked into research as well, so you have to do a placebo-controlled trial to get a drug through approval. So it’s a fundamental thing. So if you think of a drug is going to do you good or it’s going to help you, it’s more likely to do that. The nocebo effect is exactly the opposite. If you think a drug is gonna harm you or it’s not gonna work or it’s got no chance. Then actually it’s less likely to do you good. And it’s really, and this is where the phrase that you used at the start, I think is a really important. It’s that this is all about setting patients up for success. And the nocebo effect is a way of undermining potential success. And it’s it. It’s as simple as that. You know, it’s actually, I was going through again my process going, I did some observational work earlier this year and I was in the process of defining the nocebo effect. When I was both excited and a bit and miffed that I discovered that it had been found in the 1960s. I was really… But it proved that it was something that was, that was good. It’s rational, it makes sense and it’s been clinically proven. So discovered in the 1960s, clinically researched and proven and then forgotten about it. So I’ll describe it as being one of medicine’s biggest secrets. And it’s not medics keeping it from us as patients. They don’t talk about it either. So when I’ve talked about this concept and how it can benefit, we’re going to in a little bit how it can, the knowledge of it can be used to benefit patients. The response from our audiences have been incredible. You know, as in they’ve gone away and changed how they practise. That based on the tool, we’ve now done a whitepaper on it, which I know you’ve read and perhaps we can make that available to the listeners as well, and it’s leading to more work and there’s a lot of interest in it, but yeah, so and a simple answer, the nocebo effect is the opposite of the placebo effect. It’s believing if you believe something will harm you, it’s more likely to harm.
Sam
Is it this harm that comes from it? Is that because the negative views that people might have on treatment, for example, lead to practical effects? So, for example, if somebody has a negative view of a treatment because they think ohh, this isn’t going to work or this is gonna cause me more harm than good. Is it because of that or is it more of an unexplained thing of like there being a correlation between negative thoughts and treatment not working so well?
Steve
It’s more the first part of that basically. And I think obviously I speak from a background of cancer and almost all the patients I’ve helped to support and I’ve been privileged to support literally thousands of patients over the years. So my observations aren’t my based on me. It’s not n = 1, it’s an N equals thousands. And with the observations I’ve had, chemo is the classic one and it does come true again for many other medicines as well. If you think about chemo, anybody on the street, you say to them what’s chemo like for somebody to take, the answer is it’s horrible. The things you have to go through. You will lose your hair. You will be sick all the time. You get very bad diarrhoea. You’ll lose weight, you’ll be housebound, you know, infections come. This is chemo. That’s the perception that we all have of chemo. So consequently, when we’re approaching chemo. We approach it expecting that. And this all comes in from lots of places now. It can be a rough ride, but modern chemo isn’t necessarily as bad as all that, and it can be a very easy thing to go through for some people. And so it’s seeing things in perspective. So where I see it as being it’s… lots of factors leading to perceptions and misconceptions that can affect how you approach your treatment. And does that help with answering that question? Does that give you a feel for it?
Sam
Yeah. And I think as well with just taking chemo as an example. I agree, people have this this very negative view of all the side effects and things like that. And maybe that’s because they don’t have a very nuanced picture of it because you can get different types of chemo, right and they can be delivered in different ways. And of course, we’re all different as people. So we’re gonna have different experiences of it as well.
Steve
Exactly right. And that’s where modern chemotherapy, even modern traditional chemo, is very different now to the chemo that was first being used in the 1970s. So again, we, we’ve advanced in a lot of ways in there. And as you say the different, I mean the therapies that are available now it’s and all these wonderful biological treatments, cancer, cancer treatment has changed a lot. It’s I think the factor that comes into is where the information comes from and then what’s done with it, how it’s dealt with so. There’s various things that can talk about it can be the individual. They’ve had previous experience that was negative. Obviously there’s a lot of cultural beliefs around different medicine, about different diseases. So depending on what your cultural background is, that could make a difference. I have to say one of the areas that quite often can throw people into what I started calling the nocebo spiral. It’s not one or one individual thing that generally is a trigger. It’s lots of things that feed. And start to deliver a sort of a bit of a fear around it and they all pile onto one another and you’re feeling – not the patient themselves doesn’t spiral down, but the feeling about the treatment spirals down, usually before the treatment starts. So that’s where we say about setting up for success. Here it’s setting up to fail. So what can we do to counter it? So some of the areas that I think is a common thing is well meaning family and friends. When you’ve had a diagnosis of a serious illness, even if you’re not hitting the Internet, they will, but they will quite often speak of again their experiences. Or “I knew somebody that was on chemo a while ago, and this is what happened to them”, and also all of these stories start to come in, which obviously plays on your mind. Because your family and friends are precious to you and these aren’t said to you to harm you or to hurt you, they’re said from a well-meaning place. But it doesn’t actually help in a strong way. The other thing of course is that we all do our own research, we can’t help it. If you’re told you’ve got cancer. Maybe not as soon as you get home, but pretty much pretty quickly within a day or so you’re going to hit the Internet. And going along and saying, OK, what’s going on around it? And if you look at stage 4 cancer, the stories are horrible. The numbers are, they’re scary. There’s a lot of doom and gloom. When I, one of one of the stories that made me keep Strive For Five going was a guy called Patrick who I met at a charity event in Birmingham and he came up to me and he said are you Strive For Five? Yeah. And he said wait here and got his wife, came over and they said how grateful they were because they said seeing the Strive For Five website, was the first positive thing they found about having the disease. Everything else was scary and it meant they were going to die soon, that he was going to die soon, and so it’s… That’s what you get from websites. But there are good ones out there and there are very good Facebook forums. There are some bad ones as well. So you need to be able to help be. Helped to be navigated around them and also be helped to interpret what you’ve heard. The other bit that can really feed into the spiral are books. There again, there are some very good books out there that can give some wonderful information in a very supportive manner to somebody, especially newly diagnosed. But there are also a lot of self published in inverted commas “self help” books that aren’t based on science, they’re based on pseudoscience and there are a lot of snake oil peddlers. Who will tell you, you don’t need chemo, chemo will kill you. What you need is the herbs that we’ve mixed. Come and buy it from our side and there’s a lot of versions of that. So again, so all all of these things you can imagine these will spiral in. That’s, all those are environmental. If you like, factors, these are the outside factors. The bit that can make all the difference then is the healthcare professionals. Your doctor and your nurse. And this is in two ways. First of all. If they spend time talking to you to understand what your background is and what you’ve taken in. So what’s your current thought about the disease, about the treatments that we’re being, we’re gonna offer. If they can find out that, you know “I’m scared because I’ve been told this, this and this”. They can help put those into perspective. And help to take away some of those negatives to reduce the spiral, if you like. So there’s a, if they can do that well, that’s going to help a lot. The problem is because doctors and most nurses aren’t trained on communication skills, they don’t have the tools to be able to do that very often. I’m involved in some projects to try and help to correct that and to on a global basis to deliver better communication skills for doctors so that they can. They can find out what these little nuggets are that could be causing a negative feeling towards the drugs. Yeah, the nocebo effect. The other bit of the healthcare professional thing is that, I can say this is very much true in cancer. Again, I can’t speak to other diseases, but cancer has had one hell of a renaissance. The 10 years that I’ve had this disease, we’ve had so many advances. You mentioned or that that, you know, the immunotherapy is the biological therapies, et cetera. Some of the surgical techniques, the radio, the advances in radiotherapy. All of this has been phenomenal and the results have been great. People are now living longer and full lives, even with advanced cancer. And again, I know this this sort of thing is true in many other diseases as well. But in cancer, the language and the communication of it hasn’t changed to keep up with these wonderful advances. So at diagnosis, most of us are still put into one of two categories when you got advanced disease. And the medical terminology that’s put on your file is either curable or incurable. And you’re told that at the outset. There isn’t, to my knowledge, another disease where you label somebody incurable at diagnosis. And that’s quite a heavy burden to carry. One of the most common things that I see is patients coming out of their consultation coming onto these groups and coming for advice and saying, well, I’ve been told I’m incurable. That’s it then. And that’s natural, isn’t it? So, you know, but now it’s much more nuanced. So that language has to change and update, and there’s lots of other ways. So we’re in a world at quite rightly of full disclosure. We as patients have a right to know fully what’s going on, what the data is about us, what we’ve got and have access to everything. And the area of, the era I should say of full disclosure in oncology quite often leads to a tone of pessimism. So they will paint the bleakest picture, because then they can’t be accused of overpromising. I understand where they’ve gone to with that and this is common. I I do. I see this a lot. I have to say my disclaimer on this is I’ve had excellent care. My oncologist and I have a great relationship and it’s part of the reason why I’m still here at 10 years. You know, we work on me as a team. And the same was with my colorectal surgeon as well. So I’ve that’s why I can see what’s going on with other people as being not best. So this isn’t from a bitter place that bad things happen to me and I want it to change. Good things happen to me. I want everybody to have the same good. And I think that’s the whole thing. So it’s, so the tone around it as I say, instead of pessimism, the phrase that I tend to use is cautious optimism. So it’s rather than saying, you know the stats are that you’ve got, you know, for my diagnosis, the median survival was 18 months. The stats said that five year survival when I was diagnosed was 4%. That’s doomy. Yeah, yeah. Yeah, it’s fair enough to another, but what a doctor can do is put those things into perspective. These stats aren’t about me. They aren’t about the patient sitting in front of them, they’re about the whole population. It’s historical data. Based usually about five years ago, looking backwards from there. And so. It gives an idea, but where it’s important then is the doctors can reframe it and say, “so now. I’d like you to go on to this treatment. Because the research has shown or my experience of using this particular combination of drugs on someone like you is that it gives the best possible chance. So let’s see. So let’s give you this for the next three months, six months, and let’s see how your response is. And then there are other things that we can do.” That’s not promising the world. That’s not saying we’re going to cure you. But it’s a very different tone of communication. To all of that. So the doctor communication itself can feed into the spiral in a negative manner. So that’s where there’s a balance of lots of things that can affect it.
Sam
Yeah. And that’s all really interesting and reminds me as well just talking about that communication with the doctor and the patient and talking about statistics. So when I was 30 in 2018, I was diagnosed with, well, I was diagnosed with womb cancer and duodenal cancer at the same time. And for my duodenal cancer, they decided to do Whipple surgery, which is a very big surgery. It’s mostly done for pancreatic cancer, and it removes the head of the pancreas, the gallbladder, the bile duct. I think I’m forgetting something as well, but yeah, it removes quite a lot and it’s a big operation and you end up in the high dependency unit. I was there for two days and then another week on the general ward. And so when I was talking to the consultant beforehand and he was explaining everything to me, of course the statistics come up where, you know, they have to say to you, you know this is the percentage of chance that you might not survive the operation. And I can’t remember what the percentage was, but it, I mean, it didn’t sound too high to me anyway, but I didn’t really have anything to reference. But he framed it in a really helpful way because he reminded me that the statistics were based largely on people who were a lot older than me, who were going to have, be more likely to have poorer outcomes. And so actually if we were looking at just statistics for people my age with my health and background, we would be looking at lower still percentages and yeah, that that struck me as something that was quite helpful for my doctor, perhaps negating the nocebo effect.
Steve
And that I think one of the things there is… Well, it depends on where you’re being treated. To get Whipple surgery, you’ve gotta be at a good hospital, a big hospital, I mean, you know. It’s a major operation. But when I met your colleagues when I first linked up with Bowel Research UK, it was at a medical conference in Liverpool that was presenting at. And the next speaker was a surgeon who the previous day had carried out Whipple surgery.
Sam
Oh OK.
Steve
And he could, he was so exhausted from doing the operation. That he could, barely speak, his voice was raw. He was, you know, he was, he. He referenced it a few times. I’m really sorry if you can’t understand me, but this is what it’s like the day after you do an operation like that, that’s the person that did the operation. Being the recipient of the operation, I can imagine how you felt the day afterwards. These are our leading experts to be able to do an operation of that size in in colorectal cancer for peritoneal mets there’s something called HIPEC or PIPEC, which is not quite as drastic as Whipple, but it’s up there. And again, the people that carry out that sort of operation are generally better communicators. Because they have to take the patient through so much stuff.
Sam
Yeah, that makes sense.
Steve
And then this actually, this also because we’re talking about this in the clinic setting typical clinics, this is also relevant for clinical trials. How a trial is introduced and the possibility of a clinical trial is introduced to a patient. Because again, one of the things I see that I haven’t had. To touch wood. I haven’t needed to go into a clinical trial yet, but what I see as the way it’s introduced to somebody in a clinic is generally “I’ve done everything I can. The only thing that’s left is a clinical trial”. Which doesn’t make you think “Oh good, this is this is going to give me new hope.”
Sam
No, it’s the last resort sort of thing.
Steve
It’s last resort absolutely, and it you know, and it may well be last resort, but it could be introduced differently to say “we do have more options, the next options are clinical trials and the one I’m thinking of… The work that’s been done in it so far makes this a really good option, and that’s why we want to look at it”. So again, introducing something different in that way. I’ve seen similar, you know, you know there’s a treatment ladder, you know. You go first line, second line, third line treatment. I’ve, I’ve come across lots of patients who’ve been told by the doctor. Of course, first line treatments failed. Subsequent treatments aren’t, don’t stand as much chance of success. So you think, well, that’s it, you know. Again, these aren’t going to give me very much. But actually looking at the stats, even on those even fourth line chemo for stage 4 colorectal cancer can give a 25% response. That’s pretty good for fourth line treatment for anything. You know, so. So again, it’s how these things are introduced to help the patient be positive. Again thinking about that in clinic communication you have… your experience with the surgery is it is one of the golden examples. That’s exactly the right thing. Combine that with all of the scary stuff that’s out there. It’s understandable that people can be scared.
Sam
Yeah, it must be difficult for doctors, though, to do this kind of communication and mitigating the nocebo effect, if you don’t know what the patient is worried about, if the patient doesn’t volunteer the information like “I saw this on the Internet” or “my friend said to me the other day” or “I’m worried about such and such”. If that information isn’t volunteered in the clinical setting, it must be very difficult for the doctors to be able to deal with.
Steve
Absolutely. And I should say I’m not doctor bashing here. The oncologists that I’ve worked with and that I’ve seen do a fantastic job and they all do it from a very genuine place. They aren’t trained on this. You know, and so if you’re not trained on how to communicate, how to open a patient up to commenting to you. Then actually how? What chance have you got of finding all this information out? The other thing is, this is why the team comes into it with the nurses, etcetera. So that this the initial conversation that a doctor has at diagnosis. Almost certainly won’t get lots of information because we we’re all of us, are snow blind. We’re, you know, you get all the information come to us just being told you’ve got a life threatening disease. Is enough to switch your brain off, yeah, you don’t go into reception mode and so communication is there. Follow up appointments are where the magic happens and bridging the gap. And again, this is where the nurses can be helpful and available more than the doctors can be. And that’s integral to it. So it is. And you said it quite right there. It’s helping to uncover what those concerns are that a patient may have, they may not be aware that they’re, that these might be front of mind things. These are worms that have got into their ear and are milling around there at the back of the mind, and it’s actually helping to make sure that you’re addressing those. It’s not the only way to set up success, but actually it’s a remarkably easy way, and it doesn’t cost anything. You know what it does cost is time. And that sometimes in the NHS can be a difficult one.
Sam
Yeah, absolutely.
Steve
But if this claim is invested, it makes the subsequent treatment and consultations easier. So it’s a good investment to be able to spend a bit more time in the early days on that.
Sam
It occurred to me as well that perhaps one way to improve the communication is if you have a good relationship with your doctor and if you see the same doctor all the time, which obviously if kind of you’re going the first time, then that’s you can’t help that but. In a previous podcast, which we discussed that I think you just listened to, today actually with Nigel Horwood, he was talking about organising yourself and sort of advocating for yourself within the NHS and he had lots of good tips and we spoke about there being research that actually says people’s outcomes can be better when they see the same doctor all the time and how he always insists on that. And it just occurred to me that that’s another good way. If your doctor knows you and has a good relationship with you, he or she may be able to foresee some of your concerns.
Steve
And that’s I think that’s really, really important something else that you have to say, second opinions come into this as well, yeah, if or if you if you don’t have a good relationship with your doctor. If you feel that they’re not listening to you, or they’re not, or they’re treating you in standard protocol way, they’re not treating you as a person. You can ask to be seen by a different doctor. So you can ask to be referred to another oncologist, another specialist, either in the same centre or in a different centre, so sometimes that’s necessary, and I’m not saying to everybody if you’re not getting good results, you have to go to a different doctor. It can be worth having a second opinion, but if you don’t have a relationship that. That works in the way that you were just describing there. If a patient doesn’t have that rewarding relationship where they feel the doctor is listening to them and helping them then they can, you can ask to be seen by a different doctor. That’s at GP level as well. That’s all the way through and. But then you lead to your, yours and Nigel’s point of. Once you found that doctor seeing that same doctor time and again, that consistency makes a real difference.
Sam
And as well I’m thinking about nocebo effects from kind of even before diagnosis potentially. Or like when if you sort of start having symptoms, for example, some cultures, it’s very stigmatised to talk about your illnesses. Especially when we’re talking about bowel conditions, bowel diseases, bleeding from the bottom. Don’t know. Faecal incontinence, constipation. All of the really unsexy stuff that we sometimes call it that people just don’t want to, to talk about that can. It’s difficult enough when there isn’t kind of that extra stigma, but in some cultures that’s even more the case. So I guess what I’m saying is does nocebo take effects that early on, even before diagnosis?
Steve
I do, absolutely cause it’s… with any disease. When you go, when you’re getting symptoms. It’s stigmatising it’s, it’s upsetting whether or not you talk to family and friends about it at that point. Isn’t common, but also being willing to as you said. But again, when I was diagnosed, no one talked about bowel cancer. It was, it was, you know, I hate to say it was unsexy cancer. No cancer is sexy, but it’s, it was something that just wasn’t talked about. When I started talking about it, turned out everybody knew somebody that got bowel cancer. But nobody talked about it, so it was at that sort of level. And so yeah, absolutely so. In the whitepaper we do cover this. It was the, and actually it’s where I’ve had, it’s doing the work on this as observational work is where I found the nocebo effect. When I was doing my research. And there are standard emotions and psychological issues that are common to patients throughout the cancer journey from having symptoms, going through diagnostic testing, being told they’ve got cancer, waiting for treatment, going for surgery, going for chemo, etcetera. And it’s different things that, not everybody gets everything at every stage. But there are common things throughout it, and there’s an uncertainty and fear when you’ve got symptoms and you might be starting to look at diagnostic testing. Because the classic thing again, the Internet is where everybody goes now. Got these symptoms and that means I’m, you know you. You look down. It’s like that means it could be this and it almost always gives the bleakest thing possible and so on one of the forums that I help with on Facebook it’s not specific to stage 4 colorectal cancer. And so we’ve got a lot of people coming on saying they’ve got some symptoms. They think they’ve got cancer, they’re come on. And of course, the advice they’re getting is very well meaning from a cancer community, from a community of people that are diagnosed with cancer. So I often jump in and say. Please remember that the symptoms you’ve got could be lots of other things and it’s helping to keep things there, but again, that’s an example of. They’re automatically spiralling into. I’ve got cancer. It’s. I’ve got a lot of symptoms, so it must be bad. And so the- sorry, I should say this. The nocebo effect isn’t only about how you approach the drug. It can also be about how you approach the disease. Because if you are approaching stage 4 cancer, as this is an unbeatable thing. Then that’s gonna make you less receptive to anything good from the medicine because it’s look, it’s hopeless. Of course, it’s not. It is that thing of, you know, visualising the cancer as being – the disease, any disorder that we’ve got – as being something that we can be something that we can deal with. With these drugs as a tool to get us there. But those earliest bits that you were talking about when you’re getting symptoms when you go through testing. That’s when you suddenly you can be running so far ahead. That you end up going doom and gloom. And so again, you’re in this spiral and so it’s again knowing all this again, it’s the doctor’s job. To actually be able to bring people out, that’s, you know, you, you may be thinking this, but please don’t worry about it. You know, there are lots of things it could be we’re looking to eliminate stuff. Then we can talk about treatment and that’s where I often advise patients take it all one step at a time. Especially in the early days. If you’ve just been told you’ve got disease, you’ve been tested for it. If you start to go down there, what’s going to happen in two years’ time, three years’ time? There’s too many variables in the next three to four months. You could go off in all sorts… so take it, what do I need to be doing? When you’re diagnosis… For me it was diagnosis. OK, I’ve got surgery. I had surgery within four days of being diagnosed. Cause I was. It was quite an advanced disease. It was just a case of. Right. I’ve got to now get ready for surgery. What happens after isn’t important. After surgery, it was recovered from surgery, build myself up because I’m going to go on to chemo at some point, so it was focusing on recover from op, get ready for chemo and it was what happens after I start chemo isn’t important at the moment. So knowing all these things could be there is fine. But don’t focus on them. It’s just right and all of this is how you can set yourself up on a trajectory. To be able to get better success. And it often does go back to your point of before you’re even diagnosed. You’re quite right.
Sam
Yeah. And it’s, it’s what we sort of see in the media as well. And just thinking, well, not the media, but the Internet specifically and thinking about surgery. And stoma is, having a colostomy bag, or an ileostomy, is something else that can be really stigmatised and, you know, people might have this view of stomas, you know, just being very, very negative and kind of not being able to leave the house or cope with it or always being, I don’t know, dirty or smelly or ruining your sex life or all sorts of things that may not be true at all, because I mean, I had. I had a stoma only very briefly, I had one. After I had bowel cancer in 2010. I had it for five months when I was 22. And well firstly, thank goodness that my mum was around to help me, but if she wasn’t and I knew that it was gonna be long term rather than kind of knowing it was going to be temporary, I think I would have been a lot more independent with it and being able to deal with it. But aside from that, I could do everything that I would normally do, and if I still had one now I like to think that I would be very confident I would be getting it out in my bikini and, you know, showing it off. And I mean just going off on a tangent now a little bit, but Adele Roberts, the BBC presenter, has a stoma called Audrey, famously, and she’s going to be on Dancing On Ice soon. And she’s been talking all about training with it and sort of showing her bag on Instagram and all of this sort of amazing stuff that’s really just drawing attention to, you know, you can still live well with a stoma. Yes, but there is also there’s just some stuff out there that would really make people worried about having one, you know you hear about people who, quite frankly, would rather die than get one which is incredibly, you know, sad and difficult and maybe one of the worst kind of examples of nocebo effect. Because here’s something that you could do that could really help you, it could be an alternative to chemo and whatever else. And you know, people might not do it and it’s a lifesaving thing.
Steve
Because of misconceptions and misperceptions, it’s exactly nocebo as you were saying.
Sam
Yes. Yeah.
Steve
When I was getting ready for my op, the one of two times that I broke down in tears between diagnosis and starting surgery, the first one obviously was when I got home after the diagnosis was an understandable one, but a day or so later I was sitting chatting with friends and it suddenly occurred to me I was probably going to have a stoma. And I was a middle distance runner, you know, 10K runner at that point had moved across the trail, racing mixed martial artist, doing Brazilian jujitsu. All of that stops, my life. All the things that I do for pleasure. In my opinion, we’re going to be stopped. Luckily, one of the friends that was with me had knew somebody who was a support nurse who helped on the support line. So the next day she and I had a chat and she would talk to me about what people can do and everything that you said. Well, I now have because of being in the bowel community, so many friends and this is, this is one of the wonderful positive things about social media. Is there are so many people that show themselves now out doing wild swimming with their stoma bag. And it’s that it, you know, it doesn’t. It doesn’t have to stop them. So. So I think some of it, some of that misconception is going away with that. But you have to deal with it before it becomes an issue. And again this is where it all comes in, as if you know these things are common. Then they can be dealt with upfront. You don’t wait until they’re a problem. You can head them off and that’s why in the whitepaper we’ve got at the different points in the journey, some of the different things that people are feeling. It’s only like 3 or 4 emotions like fear, being impatient, shock etcetera. But knowing about these things and none of them are shocks. But making them front of mind when the doctor is talking to you means the doctor can help you to get through this. One of the big issues is waiting for the treatment plan and waiting for treatment to start. You know, we have a I think it’s a three month window or two-month window in cancer that says from diagnosis to starting treatment has to be within this amount of time and we’re missing it consistently. The problem in that time is that’s when all the external factors hit you because you will be hitting the Internet. Your friends and family will be talking to you. They’ll be hitting the Internet. People buy you books. Here’s a, I’ve just seen on Amazon this book about how to beat cancer. And it’s, there’s no science in it whatsoever, so that that’s the point when all of the really, that’s stoking up the nocebo spiral can really happen. Like if we know that’s the case, we can bridge that gap with better communication. So it may not be face to face consultations, but it could be telephone chats with the nurse. Just to check on how you feeling, you know, is there anything that’s on your mind? Have you seen anything that you want to chat about and they can proactively say just to let you know, here are some, here are some things to help you get ready for it, things you can do. So it’s all about. So again you can head off the nocebo effect in that way. As well. So stop it from becoming such a big spike.
Sam
Yeah. So if people ask the right questions like as you say, have you seen anything that’s worried you recently? You know, do you have any concerns? Yeah. And I wonder as well if it would be helpful if patients were writing things down, like sort of keeping a diary because as you say, you might see something that worries you and then it might end up in the back of your mind. But it’s kind of there niggling away, but then when it comes to actually talking to somebody, it’s not at the forefront. So you don’t end up bringing it up, I wonder if… I’m a writer, so I’m biased but.
Steve
Yeah, I don’t write prose the way that you do. Write all of your stuff. It’s that it’s elegant and eloquent. I don’t think that, unfortunately. But lists. Yes, I’m a bit. I really am a big advocate of this. I do it. Again. My background. I’m a biochemist, I’ve worked in and around healthcare since 1980s. I’ve worked with top level medical expert global experts in different diseases. I’m not fazed by talking to doctors. But when I’m talking to a doctor about my illness, that could be life threatening, my brain quite often goes to mush. So there’s a couple of things I’ll always, for my consultation. So I always take a friend with me. So having a second pair of ears, that friend may not be active in the discussion, but they’re actively listening. Yeah, because they will hear more things than I will. But all the questions I’ve got, the little concerns I’m worried about this. I’ve seen this. This is happening to, you know, you know, I woke up today and felt like this and put that on the list. And when I’m with my doctor, you know, it’s not so often there because you know, 10 years and I’m on maintenance chemo, our conversations now tend to be 5 minutes talking about the medical situation and 20 minutes talking about projects that we’re both working on. So it’s become a very different consultation now, but he would say to me right, have you got your list? And I would go through my list and literally be one after another, and sometimes make notes next to them, but I’d tick them off and I would go through all of them. And he wasn’t happy with me going until I was happy that all the points have been covered. So all of these things absolutely make a list for either chatting to the nurse or the doctor because. You will forget. And that’s not a criticism of any individual. This is nothing to do with intellect. This is to do with brain going to mush. In that sort of environment and it happens. To all of us. The other bit of course is. Can we talk about some of the fact there is good and bad out there? There are some very good books. There are some excellent Facebook groups and charity-led forums. That exist, and these are great places where you can get moderated content. And it’s actually. Why? Why can’t we get signposted to the? You know, not just saying that doctors are often saying don’t go searching on this. You can’t tell somebody these days not to go and research the disease. No. Well, if we don’t do it, someone’s gonna end up doing it for us. So we’re gonna go out there and find something. But the common thing you’re told is just go to reputable places. How do we know what’s reputable?
Sam
That’s a good question.
Steve
You know, if you look at the Internet these days. It’s so easy to set up a website. So how do we know that’s a website with ethical content? As opposed to some, some crazy person, that’s got an axe to grind or more. More commonly, that’s got something to sell and. And so how do we know where to go? And so I think signposting would be really, really helpful to us. So again go to these places where you will get good support. And I have to say that many of the charity, obviously I do a lot of work with a number of the charities the medical charities are phenomenal. But for many of them, their websites aren’t the easiest things to navigate. Because there’s a lot of different stuff in there and the search searchability of the websites is complicated and so I think that there’s things that can be done to improve there. So that’s why I think saying to someone, saying to a patient this charity has a good forum. So they go and find the forum. Rather than go to that charity’s website and see if you can find good information so. So that can all help to take away from it. Take it away. I should say as well in terms of the nocebo effect, a recurrence often is a tougher thing to for a patient to face than even the original diagnosis. So again, in the cancer world, if you’ve gone to a treatment, clear scans you sometimes you’re even discharged. But yeah, you’ve got clear scans, you’re going to be monitored for a while. You think great. I’ve done it. Six months, 12 months maybe, and two years later it may come back and at that point, it’s actually a really tough place to be. So again, the psychology is that that the doctors should spend a bit more time there. Putting this into perspective cause for a doctor’s perspective they almost expect it to come back. You know, it’s not saying it always will as the stats vary depending on the stage of the cancer. But from that point of, it’s never a shock that cancer comes back. And so they tend to be quite dismissive of that side of things. But actually, if they’re aware of it being a cause of concern for the patient. Then they can spend a bit of time, then reassuring them, reaching the patient to again get into a more even keel for how they move forwards.
Sam
So does a recurrence itself feed into the nocebo effect? Because it’s, you can see it as almost evidence of well, that didn’t work. Yeah, or that didn’t take, you know.
Steve
Yeah, it’s exactly. And the other thing is patient self blame. I’ve obviously done something wrong.
Sam
Yeah, I’ve been there.
Steve
And I’ve obviously messed it up. Yeah, you’ve done it. It’s not a, it’s. It’s not an uncommon thing. It really isn’t. It’s the I must. I should have done something better. I should have changed my diet and I didn’t. It was lots of things and again. This has to be if the doctor and the nurse can deal with this just to help the patient get over that hump. Helps them to be able to move into things. One of the things I’m going to go back to the diagnosis conversation and relate it to this. When I did one of my first talks on this was about 7-8 years ago and it was to a meeting called IMPACT. Improving the management of patients with advanced colorectal tumours. Great acronym. And so and my brief was tell us what we need to be doing better and communication was one of them. And I’d done all my slides, my normal all very pretty slides and that’s the thing. But spontaneously I said. When you’re sitting in front of a patient telling them that they’ve got cancer, that may be the 10th time that day you’ve delivered that news. But it will be the first time in that person’s life they’ve ever heard it. And you have to say it in that manner. And then for the second time couple years later, I did a reprise of it and said, and if it’s a recurrence, even more so. Because you have to help them get past that. So, but this is all the case. All of these things can go in. And again feeding into nocebo effect, but then they can be dealt with. Because it’s not. It’s not about forcing someone to be positive, it’s addressing misconceptions that are making them feel unnecessarily negative. Does that, did that come clear?
Sam
Yeah, yeah. And is there anything that clinicians might do to accidentally trigger the nocebo effect? So we’ve, we’ve spoken about what they can do to try to mitigate it is, is there anything that happens fairly frequently that might accidentally trigger the nocebo effect?
Steve
Is that the bit we’ve mentioned before about tone and communication, the tone and tone and terminology needs to needs to update and become much more patient focused. And so just to, just to, you know, go away from incurable comments. Inoperable is another common one. The first time I did that talk, I said if instead of saying inoperable because for a patient being told you are inoperable is a curse. Whereas actually they don’t mean that, they mean we can’t operate right now. And so and I did that and the chair of the meeting, who is the future President of the Association of Colour proctologists great name for him and association. She emailed me a couple of days later to say thank you for the talk said yesterday in clinic. I was sitting in front of a patient, was about to say my usual spiel about you inoperable. Heard your voice as I was about. To say it. Changed what I said and the outcome of the consultation was completely different. But couldn’t believe the difference just from avoiding that one word and saying what we want to do is let’s see how you respond to chemo. And then we can see if we can operate then. And it meant that the patient went away saying I want to get hold of this chemo. So again, it’s that sort of thing that can help to. Take away from what would have been a nocebo effect and actually help the patient go onto a much more positive footing.
Sam
Yeah, it just minded me actually and I think I’ve told you about this before, when we’ve chatted previously, but reminded me of when I was referred to another hospital from my local one to have a look at my duodenal polyp and so I was sent to this expert gastroenterologist and he did a gastroscopy and then I came out of that and he was talking to me and I think there were even people floating around, so I think we weren’t in even in like, a private room. But he was speaking to me and my partner afterwards and he basically said there’s nothing. There’s nothing I can do with this. Which to me was like Oh my God. It’s inoperable. Am I gonna have to have chemo or can they just not… You know, what, what’s going on? What he meant was that he couldn’t get it out in during the gastroscopy. It was operable. He just. He couldn’t do anything about it today, but that’s not what he said, and it terrified me. Scared the daylights out of me that he’d described it in this way. I mean, I left there thinking that it I wasn’t. They weren’t gonna be able to operate, but they did. They did the Whipple surgery and. It’s fine. Oh.
Steve
But all of this comes into it. So. So it’s about one of the things that again, the psychologist that I wrote this paper with, Samira, she calls this reframing. So this is the technical phrase for it. But it’s just a case of saying the same thing from a different perspective. Taking that negative phrasing, saying it in a more balanced way. And you put the patient into a completely different perspective. Absolutely. It’s key.
Sam
And so have you personally experienced the nocebo effect if you don’t mind me asking?
Steve
I have. I didn’t know it at the time because this was 13 years ago and I only fell across the nocebo effect this year. But yes, and you would think that with my background I would be immune to this because I know science and I know medicine and I’ve been around it for so long. But yeah. I absolutely did. So I mentioned that my surgery was very done very quickly, so I didn’t have a lot of time for things to happen then. But then there, there is a, you have to go through a couple of months recovery from the surgery before you can start intense chemo. During which time that was when friends and family were being- I’d told a lot of my friends that I’ve got the disease. I didn’t go public on. Facebook. But I had a group of friends that were helping and supporting me and they helped me out post-op etcetera and that we had a little dance card as we called it so that they would come and cook for me when I couldn’t cook. I couldn’t carry things and they would help support me through things. So I had a group of 50 or 60 friends that were helping. It was. It was wonderful. Some of them had been through chemo. Some of them had been through some quite nasty chemo for very different types of cancers. And there were a couple of them in particular that took me to one side and this is from their heart. They were telling me this. They weren’t giving me scare stories to wind me up or anything like that. They were just trying to prep me. And this one I can remember. The conversation was. Look, you might as well go and just go and buy those loads of cheap clothes from charity shops, from Matalan, etcetera. Because each cycle you’re just going to want to bin them. Bin bag them and throw them away. Because you’ll be sick a lot there’ll be other things going on, you are not going to want to wash the clothes that you’re wearing. And that’s stuck. And I remember that conversation in particular, but it was that combined with the other things and the general fear of chemo. And the fact I’ve got stage 4 disease, you know, so then everything around it was. So my first cycle of chemo I was, I was on a regimen that I was had a lift to the hospital. From a friend. I was in the chair having chemo for eight hours. And I left the hospital with a bottle of chemo attached to me on a pump so-called Fluorouracil, but it was only the day before chemo. That I’d had my line put in. So I was actually still in pain from that minor surgery to it was a gross on catheters before the ports were available so. This was tunnelled into my chest basically, so that was sore. I was scared of chemo. I was in a completely alien environment. I’d had a tonne of drugs piled into me and I was helped to the car. And my friend, he drove me back and I went to sleep for a few hours. I was absolutely wiped out. The next morning, I had a friend stay over. Next morning I was sitting on the sofa downstairs, and I remember this really, really clearly. I was sitting there and. I felt really ill. I was exhausted and I started to get really nauseous and I thought this is it, you knew this was going to happen. This, this, this is inevitable. This is when it starts, and this is this is the crack this that you know this is going to happen. And luckily, because I’ve got a yoga background and that sort of thing. I heard myself. And I was. I thought hang on, am I doing this? What are you thinking? You know, you’re everything you’re thinking here is bad and negative. So I quickly went through a couple of the booklets that I’ve been given. I’ve found, you know, if you’re feeling sick, some tips to do. And it was really simple things. It was. Things like you’re gonna want to sit up because naturally if we feel nauseous. What you wanna do is curl up into a ball in your bed and you think about what that does to your digestive tract that will make you sick. So sit up. If you can walk around a bit, try and have a bit of toast and some water and maybe a bit of tea. I did order that and felt a bit better. This is interesting. So that’s one. As I said, a yoga background, a naval qualified yoga instructor. But I thought actually there’s things I can do here in terms of mind in terms of how I’m approaching it with little mantra which was only good days and that sort of thing and instantly feel better. And it showed that that wasn’t a drug side effect. That was me creating an nocebo effect. And I’m not saying all nausea is nocebo. It’s not the case. We know that but. Whatever was going on with me, I was making worse. And with that approach they got after I think it was 3 cycles of chemo, I was driving myself to and from hospital. Because I could cope with it better and it’s just OK. So it’s just me reframing things, approaching things in a better way.
Sam
That’s amazing. That’s so empowering to hear as well that you can kind of improve your situation in in that way. I mean, we’ve talked previously on this podcast briefly about toxic positivity, Simon Boddis and I talked about cancer language, and we briefly spoke about toxic positivity. And one of my questions before we kind of started this conversation was, well, where can we draw the line between the nocebo effect and people saying to you, think positive, a positive mindset will cure your cancer and all that sort of stuff. I can tell from our conversation already that it is a very different thing, but would you like to speak to that?
Steve
Absolutely. And I think it is important. I do think having a positive approach is good. But you can’t be positive all the time. I’m a positive person and that my natural demeanour is positive. I’m not positive all the time and forcing somebody to be positive has nothing but a negative outcome. It doesn’t. But the term toxic positivity feels as though it’s a new one. A relatively recent term, but it does describe it quite well. Here we’re not. We’re talking about taking away the negatives and making helping someone to be not unnecessarily negative. There are natural concerns. They’re all drugs have side effects, you know, we know that one of the things that was introduced to me early in my pharmaceutical career is that drugs are convenient poisons. It’s all to do with risk benefit ratio. So. So we know that that’s going to be the case. But when you start to see these things out of proportion. That’s when it’s harmful. So it’s taking away them both by addressing the misconceptions, you can decrease the nocebo spiral and help the person to be on a more even keel to maybe feel much more positive. But the key thing is not feeling unnecessarily negative. And that for me, is what the nocebo effects about, and that’s the game. That’s why the medical audiences I’m talking to about are saying. This really can make a huge difference. You know, research groups, and they’re changing how they’re doing studies to try and influence this. To study into it, but also to make sure how they’re introducing their studies. Is in a manner that doesn’t stimulate a nocebo spiral. And say yes, so does that help to answer regarding the toxic positivity and the difference that we’re talking about here?
Sam
Yeah, absolutely. I mean, you’ve done whitepapers on this. Is there more research to be done in this area? What do you think we should be looking at next in terms of the nocebo effect?
Steve
I think that there is there is a lot of data on the nocebo effect, which is encouraging, as I say, I found that really encouraging, but I think we can look at around modern treatment. You know we’re in a very different world now to the 60s and 70s where this was first identified and researched, and to my knowledge there hasn’t been any recent work done in this area. There is stuff being talked about. There’s work that I’m planning with Samira. Can’t say too much about it. We’re in a draft stage. But yes, absolutely. I think we can be looking at how to set patients up for success and this is, you know, going back to your introduction here the topic when Samira and I presented this for the first time in June this year in a conference in London was setting patients up for success. And that’s what this is all about. So if we can start to research on actually where does the difference come in and how much benefit can we? And it’s qualitative data has a bit of a bad rap because it can be very, very wishy washy. Qualitative data can be really positive if it’s done right. And I think that’s what we need to be looking at here. It’s the patient well-being. And that that’s something I think we can really do more on that. So in the studies start to integrate more around this and in clinical practise auditing clinical practise doing real world data on it as well. I absolutely I could see there being some really exciting potential here. But in the meantime it’s an easy fix. We can do something about this. As patients, if we know about. Because we can say, actually. I need to filter what I’m hearing more. Just because it’s on the Internet just because it’s in a book doesn’t mean it’s true. When you’re hearing those things. When you’ve read these things that are making you nervous, even if your doctor or nurse isn’t asking you about them. Talk to them about it. Go in with that list of, I’ve seen this stuff and it’s worried or I’ve heard about this and it’s made me nervous. It’s made me feel uneasy. So we can already start to help to address this.
Sam
Yeah. And I think it’s worth saying as well that saying no to a treatment isn’t necessarily the nocebo effect in play. Just to give an example, after my Whipple surgery, they’ve sort of said, you know, you’ve got clear margins kind of thing. All good. I still got referred to somebody to talk about having chemo afterwards. So just for a second, ignoring the fact that I found out that I was being offered chemo through a letter that I was CC’d into between doctors, which is probably more common than it should be and not ideal, but I went along to this consultation to talk about should I be having chemo. And they essentially said that duodenal cancer is quite rare because the duodenum is small, so naturally you know there’s not much space to get cancer there, which makes it, you know, a little bit rarer. And they said to me, we don’t know if chemo is going to help in your situation because it’s duodenal cancer and potentially also because of my genetic condition that predisposes me might have been a difference there. But yeah, so they sort of said to me we don’t know if this is going to help. Do you want it? Quite a quick decision for me actually to say no, I don’t want this. You know, you haven’t convinced me that it’s going to be helpful for me and I don’t want to spend another however many months feeling unwell when I’ve just starting to recover from this massive operation. And then. And it feels a like a bit of a stab in the dark decision because I guess the consultant can’t tell you. Yes, you should definitely have chemo. I advise you or no, it’s, you know, it’s fine. You shouldn’t have it. Like there wasn’t that guidance there. So I said no. And then I went to my consultation with my normal consultant, my sort of original guy, and he said, yeah, I think that you made the right decision, which was very relieving. But yeah, I just thought I’d offer that up, that anecdote as well, just to say, if you’re considering things carefully and. You know, you feel you’re not being influenced by these negative misconceptions and so on. It’s not necessarily the nocebo effect to say no to something.
Steve
Saying no for the right reason. And an informed position is very different. What we’re talking about with the nocebo effect is fear driving the decision. Fear and misinformation and misunderstandings driving the decision. And again, that’s a very big difference there. There are two other bits that with what you said there that I’ll pick up on one is the phrase shared decision making. This is the magic bullet in modern medicine. If you like. They, it came from America. It’s very much coming into clinical practise and also here it’s about we need to give the patient the choice. There at various points. We aren’t in a position to be able to make the choice. I remember when I was looking to start on my intense chemo. My oncologist was very rightly saying which ones would you like? And it’s like I don’t want to make this choice. And you tell me what to have. You’re my oncologist. I trust you. Tell me. And he was really quite reluctant, he said. That’s not the way it’s supposed to go, I said no. You just say what’s best for me and that’s fine. As I became more informed, understood things our trust factor got better. We were able to make shared decision making and that’s the difference. It’s a goal to get to. But if the doctors and nurses aren’t trained on communication skills. You can never get to a platform where you can properly have shared decision making. The other bit is the letters bit which you highlighted there. We could go off a whole other tangent with this, but it’s a really key thing because this feeds the nocebo effect because what’s setting, we’ve talked a lot about spoken word. You know in the clinical clinic, the doctor or the nurse, things that they can say and things that they do say that can have effect, but actually then you get copied in on a medical letter which goes in, which discusses things that weren’t discussed with you. In a language that is doctor to doctor. And it’s harsher. It’s cold. Isn’t wrapped up very well, cause it’s not written with you in mind. It’s written with the recipient doctor, usually GP or another consultant in mind. And so again. That can be confusing. We see on some of the forums that that are involved in patients getting their clinic letter and scanning it and putting. It on the forum. Yeah, obviously bits crossed off saying that none of this was talked about. What? What is it? And so, yeah. So the letters is another thing. So be careful in reading the letters and if you read the letters, do what you did. Which is call them up, speak to them and say. I don’t remember this. You know, what’s this about? And I’m not sure. I’m not sure, we need to talk a bit more about it. And that’s the way you’ve got to handle it and. And so again, all of these things can be factors, but definitely, but I absolutely agree with you saying no for the right reason is a valid position to be in.
Sam
It’s been so interesting talking about all of this. It really has. Do you think that you’ve covered everything or do you have any kind of final takeaways that you would like people to leave people with?
Steve
I think we’ve, yes, I think we’ve covered everything. I think it’s, I’ve, I’ve really enjoyed this as well. So all of our chats, we’ve always had a good time. It’s just that this one’s been recorded and but the thing I would want people to go is that nocebo effect is a real thing and it can be, it’s about unnecessarily negatively impacting your treatment. So if you know that we as patients can play this active role. By filtering the information that we’ve got coming to us from all these different in our areas. Making a note of things that worry us and bringing them up with our doctors and nurses so they can help to put them into perspective. They may not say it’s wrong, but if you know that what you’ve heard is a fact, that’s no longer nocebo effect, that’s real, but they’re the ones that will help you with it. So be active within this, be your own champion. Which I think is a really important thing for every disease and but knowing about the nocebo effect, so use that as an integral part of being your own champion.
Sam
Great advice, Steve. Thanks so much for joining me today.
Steve
Thank you, Sam.
Sam
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