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Across cancer services in Greater Manchester, amazing work is happening every day. Frontline staff, managers, clinical leaders and people affected by cancer work together with the simple focus of making sure that every person throughout Greater Manchester is able to access a world class cancer service.
This podcast is all about sharing some of the work going on with the wider Greater Manchester Cancer workforce – that’s thousands of people across all areas of Greater Manchester, working in many different roles - and giving some of the fantastic people who do that work the opportunity to share their experiences with everyone.
In each episode, presenter Steve Bland (from the BBC podcast You, Me and the Big C) will focus on a different topic and talk to some amazing guests so if there's anyone you'd like to hear from or a topic you want to see covered, please get in touch.
For more information about GM Cancer visit www.gmcancer.org.uk.
GMCTopicEpsSeriesEp2EDIT
Fri, Jul 26, 2024 4:48PM • 23:10
SUMMARY KEYWORDS
patients, follow, appointment, work, brian, important, pathway, people, clinic, support, conversation, telephone, wife, ring, years, colorectal cancer, cancer, treatment, colorectal, approach
SPEAKERS
Brian Stott, Chelliah Selvasekah, Paula Harris
Chelliah Selvasekah 00:00
I'm Chelliah Selvasekah. I'm a Colorectal Surgeon based at the Christie and I'm a Deputy Colorectal Pathway Board Lead for Greater Manchester Cancer. We're going to discuss today about personalised, stratified follow up following bowel cancer.
Paula Harris 00:20
So my name is Paula Harris, and I'm a Colorectal Clinical Nurse Specialist based at Salford Royal part of the Northern Care Alliance. And I look after patients that have had colorectal cancer.
Brian Stott 00:30
Hi I am Brian Stott, I'm recovering from colorectal cancer following an operation two years ago, I mean to another three years of test to make sure that it's completely gone away.
Chelliah Selvasekah 00:43
Thanks, Brian. Thank you very much. So today we are going to talk about personalised stratified follow up, it sounds very posh. It is basically, what we know is over the years from colorectal cancer, we have understood a lot about the disease. Initially, we used to treat patients and have a structured follow up which everyone complied with. But now with increasing evidence, we know that we don't need to follow those structured approach, but we can tailor based on what the patient needs are, the benefits are with that it is evidence based, it fits with what the patient needs are. And it also helps to address some of the current workforce issues in the sense. The clinical nurse specialists and other professionals can spend more time on patients who need to be seen face to face, whereas those who don't need to be seen face to face can be followed up virtually. And it gives more ownership to the patients. So Paula, what do you think about the personalised stratified follow up?
Paula Harris 01:46
It works by looking after patients for a number of years with this sort of approach. And I think over time, we've gained confidence both ourselves and the patient. I think it's right for patients, I think it's taking a little time to move away from the expectation that you have to come to hospital for follow up appointments when you're well. I think it's patients having an open door policy. So we want patients to be able to ring us when they've got worries and concerns, rather than feeling that they have to hang on for a fixed appointment. And I think it's just taken a little time to for patients to feel comfortable with that. And understand that when we say please wrinkles, if there is anything that is literally what we do mean. And I think patients need to have the confidence to know that if they bring with a concern or a question we'll be able to support them are signpost them on so I think it suits patients, I think it's about being clear at the beginning, what's on offer for patients. And it's working with patients to explain the different types of follow up, and we tailor the follow up to meet patient's particular needs. So it isn't a one size fits all approach anymore. Some people need a lot more support than others. But I think it's just having that conversation early on to see what the patient's needs are, and what sort of follow up will fit best for them. I think it's also important to add that patients can swap which arm of the follow up pathway that their arm dependent on their needs. For example, if they got a recurrence of their previous cancer, we would we would reassess things again. So it's very much to meet the patient's needs.
Chelliah Selvasekah 03:20
Thanks very much. I think that is a fantastic overview of what personalised follow up is. So how do you decide on in your experience of who would go on this pathway?
Paula Harris 03:32
So although it's very personalised, we've implemented a structure really. So when patients have completed their treatment, we'll invite them back to what we call an end of treatment appointment. So it's an hour long face to face appointment, where we'll go through everything with them. So we'll go through what the follow ups going to look like any issues from treatment, anything that they're concerned about some things that haven't settled after their treatment. And we'll go through all of that there's an opportunity to answer any questions. And it's just nice to just reflect on the journey so far. And obviously make sure that everybody's understanding of what treatments taking place and what the follow up is going to look like. And if there are anything outstanding, we can we can signpost or provide the relevant information at that point. So it's during that appointment that we would have a conversation with the patient to say, this is what we would offer as follow up, do you think that would meet your needs are quite often you'll know from knowing the patient, that form of follow up. So that's the part itself management approach at that particular time isn't going to work? So we'll agree for maybe a couple more follow up appointments and then when patients are more comfortable, any outstanding problems have settled down, then we'll move to transition on to support itself management. So it's very much an individual approach. And I think, obviously this we issue all patients with a treatment summary so that they and their GP have got a copy of the treatment summary so it'll tell them exactly what treatment they've had, the key dates and basic It's a couple of pages long, and it provides them with all the information to serve having to repeat their story, the GP gets a copy of it. So it's just a really succinct way of a patient knowing all of their, their cancer treatment. So over to you, Brian, you are the main man here, because you're the patient who is at the end of the, you know, who needs to be accepting this as something where you're comfortable with. So are you okay to talk about your journey?
Brian Stott 05:47
I think it's a good approach because from where I live, to get to the hospital, sit for an appointment, come back from the hospital, it's two or three hours. And to spend two or three hours just to be told everything's okay. You can go home doesn't seem a good use of my time and a good use of the professionals time. And that time could be better spent on people who need the extra work. So I think for me, it works very, very well. I think the main thing to think of though is that is to get across to people that there's no such thing as a stupid question. Because people think, Oh, I wonder if I should bring them, I might be bothering them. I think that that's the main thing to get over that. If you don't know, it isn't a stupid question. And I phoned two or three times on various things that I've been concerned about. And that has reassured me that everything is still progressing quite nicely.
Chelliah Selvasekah 07:01
Good. So I think, yeah, there's no stupid question that is important than that. Because otherwise, you have this in the back of your mind thinking that, should I? So how did you get over that? Did you have a patient who speak to you? Or is it through your nurse specialists? Who made you confident that this pathway is something which you want to enter into?
Brian Stott 07:22
It's something that's come from my professional work and sporting background. I learned a very long time ago from having said if you don't know the answer, it isn't a stupid question. And you'll quite often find in a meeting, you'll put your hand up and ask a question, and half the room will think, Oh, I wanted to ask that. But I didn't want to make a fool of myself. You know, if you don't know, it isn't a daft question.
Paula Harris 07:50
I think one way we've got around that problem as well, is we've offered patients what we call a wellbeing check in. So it's just, I've got one of our Cancer Support Workers will ring every six months just to say how you doing, are you alright? any questions, any concerns? Remember, we're here. And we've had positive feedback from that just it just reassures patient that that need that reassurance that it is okay to ring. So that's, that's something we've we've offered patients, some people will say, No, I'm fine. I know you're there. If I want you and I will ring you. But other people just need that little extra bit of encouragement to ring us if there is a quesiton.
Brian Stott 08:27
The only other thing as well that if you're on a course where you're not attending, and then all of a sudden they want to see you then get "Oh no they want to see me, that can't be good if he wants to see me." So I think if that's going to happen that needs to be in the shortest possible time. From that call that we need to see you to actually seeing you. Not we need to see you've got an appointment in three weeks, because that'll just pray. Because they don't want to see me and all of a sudden they do there must be something up.
Chelliah Selvasekah 08:28
Yeah I think that's a very good point. And because once you're given that sort of news, then your thinking of the worst thing. I think that's why these pathways are very clear that if someone is going to call you they will have an answer to that they're going to say they're not going to say well we will make an appointment your appointment is within 48 hours and you will come here you will see so and so hopefully and this time so it is all prescribed to you rather than just what is happening in the current state. So so when you started you probably were one of the first few who went through this sort of pathway thing. What did your family think about this?
Brian Stott 09:51
My wife was worried a bit but my wife is a worrier. I'm from playing sports and play, I deal with things as they come up. I cross my bridges when I get to them, my wife is usually ten bridges down the road. Well, what about this? And what if that? Well we will deal with that if it happens. So I think there was a degree of Are you sure that they won't miss something? Or if you don't see them, you know, will they not? And I think that has to be on the part of the patient who has to be totally honest of how they're feeling. If they're not feeling very well then say, I'm not feeling very well. And if you've got that confidence, I think it works really well. But if you're a worrier, then, you know, it's like these people, well, I didn't get the result of my test. So it must be okay. Or I could be one of those people you read about where they should have been told, but they weren't. So I think it is very much as Paula said, horses for courses is one size doesn't fit all. People are different people deal with bad news in a different way. I think if as long as that's taken into account, then it works very well.
Paula Harris 11:21
I think what we also need to bear in mind from from a specialist nurse perspective, and obviously having these conversations is yes, you're the patient, but your family are just as important. And I think it's a conversation between all of us. And that's why we would always invite relatives or whoever was important to the patient to come. Because a lot of the time, a patient being able to follow this type of follow up, it depends on the support of somebody else. So I think it's important that we make it clear that we're meeting both people's needs. And I think in your example, if your wife was worried, it will be having that conversation with her to say, honestly reassure her, please ring if you've got any concerns, we're here to support you and you and the family. So I think that's, that's important. And I think a lot of the time patients can manage on this type of follow up with the support of somebody else. And I think that's why it's important, we set you off on this pathway. And some people might follow it for five years, it's important that we check in along the line to make sure that actually the relative that is supporting were still in a position to do that. Because sometimes it could be an elderly female, elderly male that's been supported by a doctor, something happens in to them personally. And that support mechanism falls down. So I think it's important at key opportunities that we check in just to make sure that this pathway is still right for patients. Because obviously, circumstances change over the five years for lots of different reasons, particularly if people have got lots of different health problems, you've got to look at a person holistically. And don't just view their cancer treatment in isolation, it's important that we look at sort of all aspects and make sure that we're not telling you to do one thing related to the cancer, but that's detrimental to diabetes, for example. So it's about working to look after a person and support them as, as one person rather than just a person with colorectal cancer in this example.
Brian Stott 13:14
I mean, you see, it's very much a joint thing with between my wife and I, I mean, for instance, when I had the operation, it was easy with me. I just went to sleep and woke up again. But my wife had to sit at home for five, six hours while this was going on. And the surgeon said he knew she was worried and said I will phone you after the operation. And it true to his word, he phoned her and said, everything's okay. It went well. And, you know, that was a that was a plus point. And it is very much a joint effort. And when I have my telephone calls, I usually try and get my wife to be on hand as well. So she can hear it firsthand, rather than me telling her.
Chelliah Selvasekah 14:05
So Paula, Brian has obviously sort of informed us about the benefits and some of the challenges. So what have you noticed as challenges when you ask a patient whether they would want to enter this PSF new pathway?
Paula Harris 14:22
I think lots of patients will say yes, and I think we've just got to be really clear that we've explained exactly what it will involve. And I think we've noticed that people have said yes, yes, I'll follow that follow up pathway and then somebody else has asked them about what their follow up isn't like, I'm not sure what's happening. So I think it's about just making sure that patients are really clear. And not just assuming that just because we've told you what told the patient what the follow up is going to be that they fully understand what we mean. So it's just checking back in to say, obviously, we've discussed this what is your understanding of what's going to happen from from here. And I think it's important that there's a robust system in place for investigations to happen when they should happen. I think we're doing this jointly with patients. But it's really important to reassure that the patient that the expectation isn't on them to know when their surveillance tests are, that will all still happen from the hospital. And I think it's important to make that clear. I think sometimes patients will feel a bit anxious, like you described, that your wife did about what am I going to get forgotten about? And all those things. So sometimes it is just a bit of a tailored approach and say, right, well, we'll do one follow up appointment, we'll see how we get on. And then from there, we can we can transition over onto onto a sort of PSF view type follow up with with remote surveillance and do it that way. But I do think that's really important is making sure that the investigations and not just the investigations that happen, Brian alluded to it earlier, it's those results. It's the not assuming no news is good news. And understanding that patients can ring and say I've had this test, I've not had my result, hopefully patient shouldn't need to do that, because we should all have mechanisms in place to make sure that those results get received actions and letters come out to patients in a in a timely way. So I think they're they're the important that the important things really from from our perspective, is just making sure that those tests happen when they when they should. And I think for patients to know there's a list of signs and symptoms that patients will receive about things that they need to let us know about if they're concerned. And then we can either offer advice, we can change the valence appointments and things should we need to we can arrange clinic follow up. So I think it's important to have mechanisms in place to get patients back to clinic quickly if we need to, as you said before, there's no point in us asking patients to ring us with a concern and then not be able to see them for three and four weeks. That's, that's not right. So we need to have systems in place to be able to deliver that follow up when we need to.
Chelliah Selvasekah 17:02
So Brian, so it looks like you've had a good experience over the last two years. With this personalised follow up. What would you say as a take home message? On? If someone is a patient who's thinking about has had the conversation with Paula? And they're not sure what what would be your message to them?
Brian Stott 17:22
I would say I have confidence in the system. The system does work. And if you have got a concern, don't put it on the back burner, make the phone call, I made three and had three reassuring phone calls back within six hours. You know, because it's on my mind. So it's on my mind. It's on my wife's mind. So you want a quick answer. But the system it does work. I think we've got to get away in some ways from you don't have to go to a building to be told everything's okay. You can do it, you can take a phone call and have the same reassurance. Yeah, I think that will work. I mean, I think As patients get younger, moving up the ladder, then I think there'll be more open to it. I think the problem is the older generation, myself included, I'm 70, this year, some aren't grasp of technology that I have, so I'm okay with it. But I think some people haven't. And some people feel uncomfortable talking on the telephone. I've spent my whole working life talking on the telephone. So it doesn't, it doesn't faze me, but my grandfather used to hold it here and shout. So I think that's the main thing that it's gotta be horses courses, is got to be what is best for the patient, if it suits them to come and see somebody, then come and see somebody, if it suits them to take on the phone, take it on the phone, but have confidence in the system. And if it works for you use it.
Paula Harris 18:14
I think one of the other things, obviously COVID made a big difference, because we never used to do much over the telephone really, and COVID changed that. And I think for the better, because obviously, it's just given us the push to ourselves and patients to feel more comfortable with having what you would perceive as sometimes quite difficult conversations over the phone. But I think again, it's it's having an honest conversation with the patient to say we're doing these surveillance tests, and everybody knows why we're doing these surveillance tests, we're doing them to keep an eye to make sure that the cancer hasn't returned. So I think having conversations with patients, we will sometimes ask our patients, if we see something of concern. And we obviously go in to ring with an appointment, we do often end up having these kinds of conversations over the telephone, that but that's very much on a on a patient lead basis. So very often patients will ask over the telephone, what's my result? And we would be more comfortable these days having that conversation over the phone with a permission from the patient. Because that information is often better received when they're at home. You're in a familiar environment, you're not in a clinical area, sat in a waiting room. So I think it's about again, that's a very personalised approach. And it's giving patients the option when we've got significant information to speak to you about are you happy to have it over the telephone? Do you want to come to clinic and it's about making that that personalised for that for the patient and every every individual? It's different. So it's about being having honest conversations, right from the very beginning about how we're delivering significant use. Should we should we need to over the course of the follow up? I think the only thing that I would want to add obviously, it's no secret that the NHS is very pressured. And I think being able to deliver follow up in this different way has basically allowed our team in particular to be able to offer different kinds of support. So instead of having everybody on a clinic every week, having similar conversations, when patients are well, and they're fine, we've been able to move a lot of patients on to this type of follow up. So it's allowed us as clinical nurse specialists to be able to set up different clinics. So for example, we've set up a nurse led genomics mainstreaming clinic, and we've also set up a bowel function clinic. So we've been able to do that without any additional resource. So I think it's all a plus points for patients in terms of it being the right sort of follow up mechanism for them. But I think it's allowed us as as clinicians to be able to offer more with the same amount of resource just by reallocating sort of our time doing doing different things. So I think that's from our from our perspective, that's a big plus that's come out of this, we've been able to improve patient care by just altering the way that we deliver our follow up.
Chelliah Selvasekah 22:24
Thanks very much Paula. I think you've covered the important bit about is this a way of following patients up because the NHS is under pressure? It is certainly not true. It is based on evidence, and it is based on what we have learned with COVID. We are using the technology better. And like what Brian alluded to at the start traveling three hours to be told that scan is normal and then back again, I don't think it's good for the environment as well. So I think overall, we are working as a team supporting, making sure that the patient journey is, you know, optimised. At the same time evidence is used to tailor to what the patient needs and that is what patients stratified follow up is.