Experiences of primary care involvement in cancer care
Several patients described that they actively kept their doctor ‘up to date’ with their cancer care by going to see them regularly:
‘I'm seeing Doctor X today, and she will probably have the letter from him, she may not but I will explain to her what he says, yeah I mean we always debrief on everything.’ (P1, 66-year-old female)
‘After any length of time, I usually book and go and tell her how it's going, you know, every 3 or 4 months, well no, not even as often as that, certainly once in 6 months I go and say “I've just come to bring you up to date”, but usually there is something before that that I've had to see her for, I do feel she should be kept up to date, because if I suddenly go downhill I don't want to have to become completely briefed from scratch.’ (P74, 67-year-old male)
Other patients also perceived themselves to be the ones initiating any contact but did not do so without a direct reason, for example, side effects:
‘I mean they've only been involved whenever I've been to them to ask, for example when I was having chemotherapy I got this really terrible kind of pain in my face, so I went along to them for that, so when I've had to go along for anything to do with it, or to get a repeat prescription, you know then they've been involved, but otherwise they're not really involved.’ (P77, 45-year-old female)
In all of these cases, the act of involvement was initiated by the patient, rather than the primary care team.
Overall, experiences ranged from almost no involvement, and very little input from the primary care team to close and ongoing involvement:
‘He hasn't been involved that much, I think sort of the first time I went back to see him he just asked me how I was, but we didn't discuss anything about the operation or anything like that, so no, not really.’ (P214, 85-year-old female)
‘I have to say my GP is very good, I'm in e-mail contact with him, so if I need anything I can e-mail him and he will provide what he can, for instance I had a virus in April, May, with a bad cough I couldn't get rid of it, and he did give me things that you know, he wouldn't ever give to somebody who doesn't have cancer, for instance, I asked for an x- ray because I was worried, he gave me the x-ray; now there's no doubt that he wouldn't do that with somebody who doesn't have cancer, so he is very good.’ (P42, 47-year-old female)
The involvement of the primary care team in the patient's cancer care seemed mediated not only by their personal relationship, but also by the patient's proactive efforts to maintain contact, the site of the patient's cancer, the type of cancer treatment received, and what treatment the patient received from the primary care team for other conditions.
Experiences of cancer care reviews
Most patients expressed general satisfaction with their GP practice, but they did not feel their primary care team had been very involved in their cancer care. Only two of 38 patients interviewed reported having had a cancer care review; 20 patients could not recall any detailed discussion of their cancer. In total, 16 patients were in regular contact with a member of the primary care team for cancer-related issues (such as hormone injections for prostate cancer or monitoring of other cancer-related medication) or the management of other chronic health conditions, but although most of them felt that they could have initiated a discussion of concerns associated with their cancer diagnosis, they were not actively asked by healthcare professionals about their cancer and how they felt:
‘There's one doctor and I always see the same nurse, as I say I don't expect them to sort of go “how are you after your lymphoma?”, but I get the impression they don't even, they're not even aware of it, so some sort of follow-up thing would be nice because there are things you'd like to ask because when you do come back here for your 6 monthly check up they're so pushed for time.’ (P52, 74-year-old male)
The two patients who reported having had a cancer care review described it as having limited value:
‘They invited us to go and see them as a follow-up, but she was not aware of the operation I'd actually had, and she was not aware what they had in fact done, and she, sitting discussing with her “they really do that now do they?”, so it wasn't as if we could go up there and sort of seek advice and help, it was quite a big gap really.’ (P20, 68-year old male)
‘He hadn't looked at the notes, it was almost like I kind of went through “this is what I've got, these are the drugs I'm having”, which was … Trying to remember all those, so it wasn't really, there was no value to me at all at that point frankly, it was a bit of a waste of time quite honestly.’ (P16, 36-year-old male)
Views on the optimal role of primary care
Patients did express some uncertainty over the role that primary care could play in their clinical cancer care. They were unsure whether their primary care team would have the necessary expertise:
‘I wouldn't ring the GP because I would think well, he's not really going to know, you know, he's not really going to be able to help me because he's not a specialist in that area, so you know if I get sort of aches and pains that I'm worried about, and I'm thinking oh gosh, you know, what's going on there, is there something, some problem, I'll always ring my breast care nurse about that.’ (P215, 39-year-old female)
‘I mean, the GP won't give as detailed, I mean she can only talk in terms of broad facts, because that's all she can do, she's not a specialist, so you're not going to get chapter and verse unless you see a specialist.’ (P94, 63-year-old male)
However, most patients also saw it as important that their GP acknowledged their cancer diagnosis and treatment, which could be part of a cancer care review. This would give reassurance that their primary care team knew of, and cared about, what this meant to the patient:
‘It might acknowledge the fact I've been ill, it would be nice to have some acknowledgement.’ (P19, 45-year-old male)
‘I think perhaps, just somebody from the surgery saying, you know, we are here and we sympathise … I think I could have done with someone just to confirm that I'm a person and you know, a little bit of sympathy goes a long way.’ (P230, 56-year-old female)
The majority of patients felt that a designated appointment to discuss their cancer care would be useful as it could provide a legitimate context for reviewing their experience and raising any concerns:
‘I think that would be a good idea and I think it should be a separate appointment, because it's too easy just to say “are you OK?”, and I'm one of those people that goes along and says “yes, I'm fine”, whereas if you're given an actual appointment where you know that it's for you to say what you feel, it's possibly a much better outlet.’ (P230, 56-year-old female)
‘Having a contact, doesn't have to be that frequent but some sort of pattern of contact with the surgery that you didn't have to, because you're feeling well, you're not, as I said you're not perhaps pushy enough to get somebody who will come to you and ask.’ (P202, 63-year-old female)
Most patients saw the end of active treatment as the most useful time for an initial review with their GP, which would often be at the end or even beyond the current QOF target of a review within 6 months of diagnosis. Others saw the initial phases as the optimal time for review, or preferred to have several reviews during their cancer journey.
However, the vast majority of patients, even those who had regular contact with the practice, would have welcomed a call or other proactive contact from the practice, at the time of diagnosis or initial treatment (surgery):
‘Would have been nice either a call or offered me an appointment to come in, I think I would rather have the invitation, because sometimes people think they're too busy, you don't want to bother them, but you don't know yourself what you want and what you don't want.’ (P204, 57-year-old female)
‘Sort of had this nice idea of maybe the nurse from down there popping round, you've just had major surgery, let's pop in and see you, that would be quite nice, something like that aftercare wise would be nice.’ (P19, 45-year-old male)
It seems that an active approach by the primary care team would remove some of the patients' anxieties over whether their concerns are legitimate and warrant a consultation, and whether their primary care team is the right care provider to consult.
Patients mentioned various topics they would like to be covered if a review appointment were offered, including acknowledgement of the illness, emotional support, and reassurance; information, or signposting to information, about treatment options, side effects, and possible long term-effects of their treatments, and potential symptoms of recurrence; financial support, travel insurance, disability living allowance, and attendance allowance; peer support and local support groups; medication review; and formal counselling and psychological support. Other issues that were mentioned included explaining cancer in lay terms, palliative care, and support for children.
However, patients were also concerned about what they perceived as barriers to consistent primary care involvement. There was a perception that a lack of coordination between primary care and secondary care hampered continuity of care:
‘I fear that there's no consistency between specialists and GPs, because I like to feel as though I trust my GP, but when they start bickering about “oh your GP doesn't know anything”, you can be easily swayed, and you say “should I be talking to my GP about this?”.’ (37-year-old male)
Patients were very aware of time pressures on their GPs and were unsure how they would have the time needed to conduct a cancer care review within the normal consultation:
‘They don't have time, I mean I don't know how much time they're meant to spend on you … you know, you see the people outside and you know that they've got, I don't know whether it's 7 or 10 minutes, but you can feel the pressure on you all the time.’ (P74, 67-year-old male)
‘Some sort of follow-up thing would be nice because there are things you'd like to ask because when you do come back here for your check up they're so pushed for time, you haven't, they obviously haven't really got a lot of time.’ (P52, 74-year-old male)
This awareness of pressures on staff stopped many patients from raising their concerns about their cancer with their GP or nurse.
Views on the role of the primary care team in cancer care
The vast majority of participants saw supporting cancer patients as part of their role, and as something they wanted to be involved in:
‘I think this is something we all feel, that we make time for, you know, and this is, as GPs we feel we should be very closely involved in these patients.’ (practice 6, GP partner)
‘I think the supportive role, which can be played in primary care, because the focus I think of secondary care is so much on the treatment a lot of the time, I think there is a real place for the offer of supportive role, I think there's a very real role for that in the community, and I think it's an ongoing one really, and it doesn't have to fit in to the review, though it can do.’ (practice 1, GP partner)
Only a small minority of GPs felt the role of primary care in cancer care should mainly be during the palliative phase and were dismissive of the role of information provision, and more general supportive care altogether:
‘We're not an information service for everything under the sun, you want that stuff you go to the CAB [citizens' advice bureau] … we don't have the time, we can't fit people in just for willy-nilly appointments to give them a little pat on the back.’ (practice 5, GP partner)
Current practices regarding QOF cancer care reviews
Current procedures for the cancer care review varied from practice to practice, and also between GPs within the same practice. GPs from three practices reported they would normally telephone the patient when they received confirmation of diagnosis from secondary care, but patients were not necessarily invited to a cancer care review appointment. GPs at the other practices did not necessarily telephone the patient in every case, but did so in special cases. Whether they remained involved in delivering cancer-specific care to the patient was dependent on a number of factors: the cancer type and treatments received, the general health of the patient, the level of involvement with secondary care, and the previous relationship with the patient:
‘Personally speaking it's completely ad hoc, depends on the situation, sometimes you refer someone you don't actually hardly see them for 6 months, because they have the operations, the chemotherapy, next thing you know it's months later and you get a letter, I mean personally I generally write to the patient or phone them, or when I next see them …’ (practice 1, GP partner)
Cancer care reviews were largely conducted opportunistically, either in person or over the phone.
Most GPs viewed the current QOF cancer care review template unfavourably. They saw it largely as a tick-box exercise and felt that although templates in general may be useful as aide-mémoires, the current cancer care review template was insufficient:
‘I don't think it's of any value personally, I don't think it's to the patient benefit at all, I think it's just another hoop you have to jump through if you want to get paid.’ (practice 5, GP partner)
‘I find that the box for the cancer really, the QOF for the cancer, is really needless and I think, you know, the doctors were doing this anyway, and I don't think it's been of any benefit at all, in practice.’ (practice 3, GP partner)
Views on future delivery of cancer care
Most participants saw individualised and personally tailored care as extremely important and some saw too much structure as a threat to their provision of this individualised care:
‘I'd say there's a balance, I feel personally there's a balance between having a template with everything there, when you can be very easy just to tick all the boxes, versus seeing the patient that walks in.’ (practice 6, GP partner)
‘I do have slight anxieties about making everything so structured, I mean the ethos has always been “we're accessible, we're here if you want us, if you do come in we don't have to follow a template, we can go by your agenda, and what you're worried about”, and I have concerns about templates.’ (practice 2, GP partner)
Focus group participants discussed the difficulty of knowing when the optimal time would be to offer patients a cancer care review:
‘It's difficult I think to produce a schedule, where you say “we'll see every cancer patient a month after the diagnosis” or something because they'd be involved in other things, some will still be in hospital having surgery possibly, some will be having radiotherapy, chemotherapy, all sorts of other things going on, and it's quite difficult to sort of, you're going to have lots and lots of pathways and it's difficult to find the appropriate time.’ (practice 3, GP partner)
Most focus group participants favoured an ‘open door policy’ – not inviting patients in for a specific appointment but making sure they were aware they could come in at any time:
‘We may not see them for several weeks and months until things start progressing, because often the patient's got so much time going backwards and forwards to the hospital they kind of get a bit fed up with the whole thing, but I think it's just making sure that they know that they can contact us, but what you don't want to be doing is knocking on their door, making them feel that you're wanting to see them all the time, and they actually might not want you.’ (practice 1, GP partner)
Most GPs were under the impression that this ‘open-door policy’ would be sufficient to facilitate contact for the patients.
However, reflecting on the findings that many patients said they would welcome a specific review appointment, most primary care teams seemed open to the possibility of changing practice:
‘I mean that's why the whole idea to improve the patient care, if the patient is looking for the specific review, I don't think that we have any problems with that.’ (practice 4, GP partner)
‘It would be interesting to go back to this point of whether we should actually call these patients in, they may want to come in, they may not want to come in, but whether we should actually call them all in, at a certain time once they've got a diagnosis of cancer, to discuss it, at least we can go through all the things, and things they may not be happy with, whether they're frightened, and if they need follow-up, follow them up and if they don't want follow-up then that's fine.’ (practice 3, GP partner)
Focus group participants expressed concerns about their ability to cover all of the issues raised as important by patients, because of both time pressures and lack of expertise:
‘One of the things really struck me was the patients really wanted a lot of information, and to some extent I think the sort of cancer care review process is probably not the place for that, I mean I think a few good websites and information sheets or a few helplines for the patients, they could actually be more useful, I think you could do a lot of that outside of a GP setting, if there was more sort of an information infrastructure that would be helpful.’ (practice 3, GP partner)
‘I also feel you know, I probably don't know enough about the subject to give advice, but I think from an emotional point of view, yeah, you just sometimes you just have to listen, don't you.’ (practice 5, practice nurse)
Participants were also concerned about their ability to keep abreast of developments in cancer treatments, and what they perceived to be insufficient communication with secondary care:
‘So it's the initial diagnosis, that I think generally now the information is excellent, but I think at 6 months or something, often the information isn't as good, and that was I think what I read quickly, where the patients were wanting their review with us, more formal review.’ (practice 2, GP partner)
One GP participant suggested that patients could be given an information pack by secondary care, which would include a checklist with topics to discuss with their GP if needed:
‘I think would be helped by the sort of packs I was talking about, because as you say, nobody retains most of what they hear in the consultation when they're frightened etcetera, they've got something they can take home, then they can look at that and they can then say “I don't really understand that, I'll ask the GP about it”, but I don't know that we can take up the whole remit of covering all their needs.’ (practice 3, GP partner)
In addition to a lack of communication with secondary care, and other commonly mentioned barriers, such as time constraints and lack of communication with secondary care that the patients also picked up on, the primary care teams also referred to patient variability in terms of both illness history and personality:
‘… of course it depends on the cancer, melanoma's very different from having secondary colonic cancer, the connotations are very different.’ (practice 1, GP partner)
‘And it depends on the understanding of the patient; some people are more knowledgeable, some people perhaps are in denial, for me that depends on the patient who walks through.’ (practice 3, practice nurse)
Primary care teams also highlighted that different expectations about initiation of cancer consultations posed a barrier to successful communication between them and their patients. GPs and nurses felt that an ‘open door policy’ was sufficient, or that they were under too much pressure to second-guess patients' wishes adequately so that the onus lay with the patient to get in touch:
‘We're trying to be proactive, I think a lot of the time we end up being reactive to a lot of things, and I think it does depend therefore on how much effort they make themselves to quite an extent.’ (practice 3, GP partner)
