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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.
Ep4CANCERCAREREVIEWSFINAL
Tue, Jul 16, 2024 3:01PM • 27:22
SUMMARY KEYWORDS
patient, cancer, review, care, gp, greater manchester, people, tracy, practice, appointment, primary care, diagnosis, care coordinators, template, pcn, work, letter, support, conversation, organisations
SPEAKERS
Tracy Coburn, Steve Bland, Steve Churchill
Steve Bland 00:08
Hello, and welcome back to another episode of the GM Cancer Podcast. I'm Steve Bland and in this podcast we take you right inside cancer services here in the wonderful region of Greater Manchester. This is another episode in our series, looking at the innovation making a real difference to personalised care here in GM. And in this episode, we're talking about cancer care reviews.
Steve Churchill 00:36
I'm Steve Churchill. I'm a GP working in Trafford, and I'm also the former clinical lead for personalized care for primary care, Greater Manchester Cancer Alliance.
Tracy Coburn 00:48
My name is Tracy Coburn, and I'm a Cancer Care Coordinator for Denton Audenshaw Droylsden Primary Care Network (PCN).
Steve Churchill 00:58
We're here today to talk about mainly cancer care reviews. So for those who don't know, a cancer care review is a holistic review that is offered to all patients who are diagnosed with cancer, and it should be completed within 12 months of diagnosis. And the key with cancer care reviews is that they are holistic. So it's not just looking at the medical side, it's looking at how else can we help patients, you know, whether it's social issues, financial issues, it might be certain side effects. But it's about how we can help with those. And whether it's anything we can do ourselves in primary care wherever we need to signpost people, to other organisations, voluntary charitable sector, and it's just making sure that people you know, have a place they can come to as a first point of contact really. And Tracy, obviously, you do these cancer care reviews as part of your work and how long you've been doing it for now?
Tracy Coburn 01:57
Yeah, I'm in my second year now. So basically, I'm part of the RS recruitment into PCNs. And I started off as a pilot, there was nine of us across GM in the different boroughs. And basically, the cancer care coordinator role came into being. So there was all of the training, obviously, that goes into that pilot, as far as communication skills are concerned, different tumor sites, and obviously, the social prescribing side, you know, where to refer people on to the different services, and charitable organisations, as you just mentioned, Steve. I think obviously, for me, it's the benefit, ultimately, that the patient gets out of a cancer care review. It's a standalone, dedicated period of time, by invitation. A lot of people choose to attend face to face appointment, rather than on the telephone, but the telephone is always an option. Yeah, so it's a conversation rather than a consultation. That's the way that I like to approach a cancer care review. The fact that you can just sit down and chat and that you have the time to do that. Normally, I allocate 30 to 45 minutes. Some can be, you know, some cancer care reviews can be shorter than that others can be longer, depending on obviously, what comes out of that conversation. And whether there's, you know, further referrals that need or a further appointment, even, you know, to tie up loose ends or just go over things. And, you know, some people really just need time to breathe, and then come back and discuss.
Steve Churchill 03:52
Yeash I think that's a good point is that; what we want to avoid is it being just one appointment that you come in for, everything gets sorted out, and then you're gone, it's normally going to be more of like, say it's a conversation or the start of a conversation sometimes, which then will have like, say, follow up appointments, if needed. Some people were, you know, are managing quite well, aren't they? I think there's certain people who, you know, don't need a lot of support. And that's absolutely fine, isn't it? We're not saying everyone does, but...
Tracy Coburn 04:18
Yeah, absolutely. It's the offer, you're actually saying, you know, we're here to reconnect, because a lot of the time, you know, initially post diagnosis those patients, they're off into secondary care or tertiary care. They've got treatment plans. There's a lot going on, there's a lot of new faces, there's a lot of new names, you know, getting their heads around medication, that kind of thing. So, primary care, you sort of you tend to lose contact in a way. So, the connectivity of getting back in touch and saying "Hi, we're here." because obviously, as you know, there's an initial acknowledgement of diagnosis letter that goes out, Steve, I know that you've been involved with.
Steve Churchill 05:12
Yeah, and I think that's a good time to mention that this can be sometimes a bit of a ambiguity about the two sometimes called cancer care reviews. So we have, people are familiar with the quality outcomes framework, we use in general practice, you'll have a three month review and a 12 month review. And what we're talking about when we say the cancer care review is this 12 month or within 12 months, it doesn't have to be at 12 months it, it could be earlier, whenever suits the patient, really. But the three month review, I say in inverted commas, is more like you're saying it's that restart in that connection, because they'll have been that period when they've been under the hospital and may still be where they've got lots of different professionals involved. And often, they don't feel like they need another professional to kind of get in the mix of that. Sometimes they might do. But a lot of people have, you know, CNSs is at the hospital, they might have care coordinators or navigators, consultants and all that too. But that three month, I guess, appointment or review is that offer of saying, Look, we are here, we're aware of what's going on, we're sorry to hear about it. And if you need us, we're here. But we understand that you might have, you know, enough people involved. And then the second review this the actual cancer care review, is this within 12 months, which is this detailed discussion or conversation that Tracy is talking about, where you can bring up, they can bring up anything really isn't it? It's that's the whole point of them. It's not meant to be, let's talk about this, let's talk about that. It's ideally saying, what's going on with you? What do you need? And then also maybe checking through a list of things that just to bring them up? If they haven't mentioned them already? Yeah,
Tracy Coburn 06:43
I think that, for me, as we're calling this a conversation. I think it's the point that, you know, it's I've told this story, once, I don't have to tell this story over and over and over again, you know, I've made contact with you, you've come in, we've had the chat. So whatever comes out of that. I am contactable. So it's, you know "Hi, Tracy, what we were discussing last week, or this has happened." It's having that, you know, they're not calling the GP practices as such, you know, they've got my personal work mobile number, and they can get in touch. So again, you know, it's the time management that I know is so precious, with GPs, practice nurses, the Cancer Care Coordinator, my role provides that extra time for that patient. I mean, obviously, some of the things, just examples that have come out of the cancer care reviews that I've held, I had a patient whose child was severely disabled, and the mother was going through obviously, quite a lot of treatment and it was probably around the 10 month mark, of that 12 month from diagnosis that we were that you were talking about Steve for the cancer care review. And we were chatting and, you know, everything was going okay, as far as the treatment was concerned, but when we dug down deep, there was real issues with care for her child, and also respite. You know, and I know that there's a lot of pressure on respite in the community, but I was able to work with teams, and basically enable that journey to start in getting respite for the family. So there was that example, there was a another couple whose PIP allocation had been shut down by the DWP, prior to the diagnosis, but they're not reviewed since the diagnosis. So there was a lot of financial difficulty there. And again, it was just connecting back up with, in this case, going through the Macmillan Welfare Officer, and just seeing if we could reconnect with the DWP and have a review. And again, it was a positive outcome. But these things don't happen overnight. You know, you're establishing a relationship, which, like I say, you know, you've told the story once now let's now let's get you know, something done about it. And you're on that journey, then no matter how long it takes down the road.
Steve Churchill 09:41
Yeah and those examples, you know, really show how valuable A: the cancer care review can be as a process but also how valuable what you do is Tracy as a Cancer Care Coordinator. And as an advocate for these patients, you know, when they need it and we haven't spoken about it just yet, but cancer care reviews can be done by variable professionals, it doesn't have to be a Cancer Care Coordinator. It could be a practice nurse, it could be, you know, a GP as such, I guess one of the caveats is that, you know, you've said it, you'd normally allow 30 to 45 minutes or so for a cancer care review. Most people listening will know that as a GP, I don't have unfortunately that time to give to patients, which actually is unfortunate, but I know what would be best for them is to have someone who can give them that dedicated time they don't need, someone who's got, you know, got deep medical knowledge as such, they need someone who can advocate for them, who can listen to their concerns, signpost and where needed, which is why as an Alliance, we've always been supportive of, I guess, people other than GPs and other professionals, whether that's yourself a cancer care coordinators, or practice nurses with the appropriate training, undertaking these reviews, and patients getting a better deal and a better service out of it. And I know, there's data that came out of the pilot that you were part of, that has shown that the patient satisfaction is higher, with cancer care reviews done by cancer care coordinators, and even that appointments with other clinicians like GPs went down, after having reviews with cancer care coordinators, the, I guess, inference there being that because their other problems were sorted, they perhaps maybe weren't even getting, yeah, medical problems. So you know, there's data that speaks volumes about how important both cancer care reviews are and your role is as well as a coordinator.
Tracy Coburn 11:26
And I think also, it's having trust in the role really, in my role, from the practices that I work with, that, you know, if there is an issue, a clinical issue, it will come back to them, there will be you know, there will be that appointment made, whether it's medication with the pharmacist, whether it's a GP appointment, maybe it's even to process through, you know, MSK, or anything like that. They can be reassured that I have limits and those limits are not crossed, those barriers are there for a reason. And for me, it's purely a holistic focus. And should there be any other clinical issues, I mean, you know, it could even be that a scan is overdue and the patient really doesn't know who to speak to, do they get in touch with the secretary to do the booking? They don't really know what to do, because there's a, there's a lot of overload of information. And sometimes, if there's an end of treatment summary, I can refer to that and see which team exactly to speak to. But again, it's something that I can accomplish without having to go to practice admin, I can actually call up the trust direct, because of those relationships that I've established over the past two years, with the clinical nurse teams. And the surgical units and the consultant secretaries, you know, whether it is, you know, at my local Tameside hospital, or whether it is the Christie or whether it is Manchester Royal Infirmary, wherever, you know, their treatment has taken place, I can then follow it up direct. And sometimes I'm just thinking of one patient in particular. It wasn't anything to do with the cancer treatment and the follow up scan. It was actually, you know, I need a hip replacement and this has been put on hold because I was diagnosed with cancer, what happens now? So it can be just something like that, which I can then follow up and see, where we go with that. So again, it's time saving as far as the GP practice is concerned.
Steve Churchill 13:44
Yes, it's time saving, isn't it? And it helps, I guess the crux of the matter is it helps the patient doesn't it? You're helping them where before, they weren't really getting that support and they might not have known who to turn to. And that's modern general practice, in a way. It's very much a team sport. Gone are the days when it was the GP and the practice nurse. We could spend probably more than half an hour today listing all the roles that are there in Primary Care Networks (PCNs) now to help people based purely on who has the best skills to help and I know the training that you go through as part of becoming a Cancer Care Coordinator focusing on like you say, supportive conversations and personalised care. That's not training all general practitioners will have had or if they did it might have been a while ago. And that's just emphasising how we're all good at different things. And we should be focusing on potentially, you know, what we're good at and what will help patients most and like you say whether that's, you know, a Cancer Care Coordinator doing their cancer care reviews and then like say signposting to the members of the team who can help if it's medication, or if it's a symptom, maybe that isn't explained. You might think I'm actually no they do need a GP to look at this. Yeah. And that's what you have the power to do in your role, which is fantastic.
Tracy Coburn 14:54
Yeah, and I think ultimately, the patient then feels seen, you know, understood and valued. And that, to me is where I want to be heading in this role that patients feel that I am someone they can contact, I do know their story. And if there's something that they need, and they don't know who else to turn to, or where else to go, that they can just say, "Tracy, can you deal with this? Because I don't know how to." And it's like, "Yeah, let's take a look at that." So it can be an ongoing relationship, and not just with the patient. Because, you know, a lot of the time patients will come into those cancer care reviews, bringing somebody with them for support, because they don't know what to expect. And a lot of the times they've been in since their diagnosis, they've been in that situation and been told something that they don't want, you know, that they necessarily didn't expect, or didn't want to hear. So they will bring somebody along with them. And then you establish the relationships then with, you know, partners, or children, sometimes, you know, they'll come along. And so you can, you know, you establish a relationship with that family, and then I'm there to support them as well. So, you know, it's not, it's not just the patient, it's the halo effect.
Steve Churchill 16:18
Yeah that's a really nice way of putting it the halo effect. And I guess it brings us on a bit to thinking about how I guess the Cancer Alliance can help with this kind of personalised care, and with cancer care reviews. And you mentioned about, you know, that maybe the length of appointments and who's at the appointment. And that certainly factors into when we produce these personalised care standards, which is a set of 10 standards, we wanted to help, you know, primary care, GPs, people like yourself to, I guess, give the best cancer care reviews or provide the best cancer care reviews for patients. And that includes things about mainly based on patient preference based on where their cancer care reviews can be, like you said it could be in person, it could be over the phone, it depends on what's most suitable, and what the patient wants, what's easiest for them? And what they would like, who's important to be there? Is it? Do they just want to come on their own? Do they want to bring family or close ones or loved ones. And all of that we put that into these personalised care standards, which have been sent out to primary care across Greater Manchester with the hope that it will reinforce A: the importance of these reviews, but B: support practices to say, look, we know what works well here. And we want you to provide that for your patients. So that's what I guess one of the aspects we're looking to help with.
Tracy Coburn 17:30
Yeah. Because, again, I think, if you have a set sort of protocol, it always helps you understand where you want to be at the end of this cancer care review. It understands the patient understands, you know, what they're, what they're walking into as such, and what's been offered. Because I think a lot of the time, there's that, like I say, getting back to this, and I don't want to sort of keep overstating it, but there is so much going on post diagnosis in a cancer patient's life. And, again, it can be information overload, but what are they entitled to? And a lot of that can be secondary care. But also, it's their GP, which for them really is their home base, you know, there might have been with their GP for years, decades, or even just a couple of months. But again, it's that connectivity with the community, and how we can provide support for the patient, you know, back at their home base.
Steve Churchill 18:42
Yeah and like you say a protocol like that just helping practices know, because like you say it's information overload all the time. And practices are getting more and more information every year about to do this to do that. So by providing them with a protocol and saying, Look, this is what we ideally want you to do to be able to invite patients for that initial three month, I guess, review or discussion, I think its termed officially. And you mentioned earlier, we've done a template letter as well. There's a couple of template letters out there, nationally already, but we spent a while last year devising this new template letter for patients when they have been diagnosed with cancer. To explain, like Tracy just said, what is available, what offers there are in terms of what primary care can provide, what other organisations Macmillan, Maggie's obviously, we're sitting across the road from Maggie's in Withington at the moment, and what other organisations are out there and that letter was made in collaboration with partners all across Greater Manchester, patient representatives included. That seems to be available for practices across Greater Manchester to to use and we strongly encourage them to use that because, again, it's been developed or CO developed with patients and therefore we know it's got the right material in there.
Tracy Coburn 19:53
And also that letter makes all the difference, because it's one of the first ones that they receive post diagnosis. And they can put that to one side and say, Okay, those are the individuals at my GPs, that if I need them, they're there. And I have actually had a few phone calls that have originated from receiving that letter that have said "Tracy, your numbers on the letter, what happens now?" And then the conversation starts, which is great for me, because I'm there at the beginning. And there's, you know, there can be that kind of handover with secondary care back and forth. But even if, that's just a letter that they put to one side, it's contact, its outreach from the GP to say, we're here, the supports here, if you need us. And then you know, what you're entitled to. So what's coming along, you know, in the primary care scenario, to let you know that this is going to happen, maybe at this stage or this stage, but all this is entirely up to you, on your, you know, how the patient wants to engage. Because obviously, depending on treatment, and what the cancer journey for them looks like, you know, that may twist and turn or, you know, it's just one of those things that I just think it's really important, that initial letter to just outline exactly, you know, what they're entitled to?
Steve Churchill 21:27
Yeah, definitely. And like you said, it's not saying, you know, we need to hear from you now, or we want to know, have an appointment. Now. It's just like you said, it's, here's some information, here's, here's the people you might want to talk to, and here's the services that might be able to help you, depending on what is the issue. It's there, if you need it, you know, put it somewhere safe. And we're here when you need us. And I think what we then encourage practices to do as part of the protocol is when we do get to that maybe nine months post diagnosis, if the patient's haven't already said "Can I have my cancer care review?" which some of them will have done already, is to then reach out again and say, Look, you know, we're reaching that point, now, a lot of patients will no longer maybe be under the hospital, they may have finished their treatments or might not have, but to say, look, this is the time point, when we can maybe help you, you may be having less contact with your hospital specialists, your nurse specialists. But if there are issues that are ongoing, we'd like to have a chat with you here. And that's obviously where the cancer care review comes in. But we do want practices really to proactively offer that it's not, you know, if patients wants to come forward earlier, that's great. But if not, it's really important that practices, you know, do take that extra step and say, Look, we want you to come forward and have this review.
Tracy Coburn 22:35
Yeah because also as well, a lot of the practices, they won't have the advantage of a Cancer Care Coordinator in their PCN. So they will be working in a way proactively. But as far as you know, the patient's concern and inviting them in. So that letter will go out the cancer care review will be on there as an option for them to take. And then the contacting post nine months, which is probably really, if you haven't already had the cancer care review is a good time period. To sort of touch base and just say how are things would you like to come in?
Steve Churchill 23:13
Yeah not not too soon. But you say you don't want to leave it too long, either. It's that that sweet spot really. And yeah, I think that also lends into a bit about we talked about the cancer care reviews, how you do them, and for professionals who are listening as well. So there is a template on EMIS already that is used. I think we felt in Greater Manchester that maybe that doesn't necessarily suit exactly what is maybe best for patients and what's easiest for professionals to use. So we have been developing a new template. The Greater Manchester Cancer Alliance has been developing this new template, which is hopefully going to go live in the next few months later this year. And Tracy, you've been involved helping us create that as well.
Tracy Coburn 23:54
Yeah I think, you know, it probably did need looking at. There's a couple of templates that are in there already. But I think just tweaking those and getting something that's that's easier to work through. That isn't just a tick question, question question. Because you might deviate, you might end up deviating from the template, which is hopefully where you would want to go, if you're asking the right questions. And I think that that's what the new template will be about. It's about asking the right questions.
Steve Churchill 24:27
Yeah, I think it's that balance, isn't it between a free flowing conversation, like you've said, but also not being afraid to ask important things, because there are certain topics that patients often may not want to bring up, you know, particularly regarding maybe sexual dysfunction, or problems with kind of financial worries as well. People aren't always wanting to open up but it's really important that we as professionals, do ask about those. Because if we don't ask, we don't know and if we don't know, we can't help and support people. So I think it is really important and that's what we hope this template is struggling to balance between a free flowing conversation but also saying that it's important to ask about these, if they don't come up in conversation,
Tracy Coburn 25:02
Absolutely, I think also as well, Steve, it's not that it's all clinical. You know, I think it's always great to have a good holistic mix as well. And I think that the new template is probably where that's going. So, yeah, I think I'll be out in the next few months on on EMIS.
Steve Churchill 25:21
Yeah, hopefully. So. And that kind of also tells us again, about who's doing these reviews, like we've said before, is that because the review is more holistic, it's not primary focus on on medical issues or medication issues, they do form part of it. But the primary focus being on these holistic issues for patients, that it may be cancer coordinators, or cancer care coordinators, like yourself, it may be practice nurses, and obviously, we're working on you know, a package of educational material as well, which can help upskill current staff which they can then, you know, people want to get more involved. And they realise that you know, what, it's maybe better to have someone who can give more than 10 minutes of their time, like a GP might to a patient to be able to support them, that they can then say no, I'll undertake this further training upskill myself, whether it's a practice nurse, whether it might be a care coordinator, who's doing noncancer activity at the moment, but that's what we really ideally wants to support and allow PCN staff, roles like yourself as well, to get involved in doing these cancer care reviews rather than that just being the GP doing it in a traditional fashion.
Tracy Coburn 26:24
I think because obviously, a smaller practice, and then a super practice, you know, they've all got their different priorities and different strengths and weaknesses. So it's, again, it's finding the right individual maybe that is prepared to upskill and take on, you know, the responsibility of cancer care reviews, in their cancer diagnosis population.
Steve Bland 26:54
If you enjoyed that episode we've done loads and loads of other topics in this podcast, and you can find them all wherever you get your podcasts from. If you want to find out more information about the Alliance, you can find the GM Cancer Alliance on social media. And we're back next week with another episode.