Complexity

This theme highlighted the complexity of managing risk in early cancer diagnosis because of external factors including cancer symptom differentiation and the restrictions imposed by referral criteria; the multitude of services and professionals involved in diagnostic and assessment services and the plethora of policies and initiatives targeted at primary care practice.

Cancer disease and symptoms: Cancer diagnosis was an important priority area in primary care but diagnosis presented complex challenges. Cancer was a rare diagnosis in primary care although symptoms associated with cancer were common. We get lots of sore throats, and yet we get one tonsillar cancer every three [years] so sorting out the wheat from the chaff is a real challenge. (Interview 3, Participant 3)

These complexities of diagnosis were compounded by what were considered rigid referral criteria, based on disease prevalence among those with symptoms, which led to cases being ‘bounced back’ if they failed to meet diagnostic criteria. In attempts to manage what they considered was a risk to patients, some participants said, on occasion, they had to ‘fudge’, ‘embellish’ or ‘bend-the-rules’ to ensure assessment of patients for whom they had concerns: Even though it says on the form, “don’t fill out this form unless they tick any boxes” but you find a box to tick, and usually for very good reason. And I think you’d only go slightly over egging the presentation if you were pretty sure there was something there, something going on. (Interview 4, Participant 4)

Fragmentation and access to diagnostic services: Primary care staff expressed difficulties accessing diagnostic services due to ongoing service reconfigurations and the involvement of multiple agencies. This led to fragmentation in terms of staff not always knowing who, or to which services, referrals could be made.

There were also some concerns about fragmented relationships between primary and secondary care with several participants feeling frustrated by restricted access to diagnostics for certain conditions. Some participants considered this was due to ‘empire building’ by professionals justifying and ‘preserving’ their service by retaining ownership of who was qualified to make referrals: I can send people for a CT scan if I have a concern about them, for some conditions, but not others. Well why not? I’m the one who’s initiating the referral in the first place. You trust me to initiate the referral to pick the patient and prepare them so that you can come along and just arrange the scan and look at it. (Interview 4, Participant 3)

While some GPs wanted more direct access to diagnostics, this was not universal, and others highlighted the need for ‘training’ prior to referrals being made.

Guidelines content and information overload: Participants referred to the usefulness of guidelines to help symptom differentiation and manage risk. Knowledge was felt to be experientially derived and referral guidelines only considered useful for less experienced doctors. Risk assessment tools were occasionally considered unnecessarily complex when patients had ‘red flag’ symptoms and, as previously mentioned, sometimes restrictive for use in primary care: I mean, you see, from a GPs point of view, if somebody comes in who is fifty-five years of age, and passes blood in his stool, you need to exclude a cancer. Now, I don't want to know how many percentage of those people pass blood in the motion will have cancer, or how many will have piles, or inflammatory bowel disease or what have you. (Interview 4, Participant 3)

Concerns were expressed about the number of guidelines available for different conditions and inconsistencies between different sources: And that’s the problem ‘cause last year there was a big campaign, “if you have a cough for more than three weeks you need to go and see a doctor”, but NICE guidelines is six weeks. (Interview 6, Participant 4)

Participants described how the ‘tsunami’ of new guidelines, care plans and initiatives meant it was difficult to keep up-to-date: And I thought ‘that's probably a squamous cell carcinoma. That needs a two-week wait referral’. Then, I actually checked the guidelines, the guidelines say that “it's got to be over one centimetre and you’ve got to wait more than eight weeks really for it to grow” etcetera, etcetera […] and those things will change on a regular basis. Now, how do you expect an entire network of primary care physicians to stay current with all those guidelines and apply them religiously? (Interview 2, Participant 3)

Continuity

Practice staff expressed concern that a lack of continuity increased the risk of missing diagnoses and/or supporting the patient through a difficult period. This was highlighted through discussions about relationships between patients and clinicians, delays in information sharing across the primary and secondary care interface and patient follow-up after initial consultation.

Patient–practice relationships: Continuity of carer could not always be achieved in practice, although it was felt that patients preferred it and its absence was thought to possibly contribute to diagnostic delay: People have been hopping around from one clinician to another and that, and you don’t see the evolution of the story until it hits you in the face. Patients book on the day, they don’t necessarily get in the person they normally see, they get in with the available, so that can disjoint things. (Interview 3, Participant 4)

Staff felt that smaller, rural practices had closer relationships with their patients and their community, which would lead to earlier consultation. However, others felt awareness of cancer deaths was heightened in close-knit communities, which could reinforce negative views towards cancer and cancer survivorship among the local population and delay access to services.

Primary and secondary care interface: Expedited assessment following GP referral of patients through the 2-week waiting-time initiative was perceived to work well by practice staff, but delays further on in the assessment process, and outside of primary care control, were felt to put patients at risk again and exacerbated their concerns: And, well, it’s very difficult from our point of view, ‘cause we’re saying, “look, you know this may be nothing serious, however, I want to refer you on the system, you’ll get an appointment in two weeks”, and they do get seen, but then there’s a massive delay, so, you know, then they’re kinda all heightened up because they're thinking, “{whispered} the doctor thinks I've got cancer” and then nothing happens for ages, and it’s really hard for the patients. (Interview 3, Participant 5)

Practice-based follow-up: Patients themselves were also considered to cause delays if they failed to attend. Practices debated the extent to which they should chase these patients up and the risks if they did not: In the back of their mind they know they should, but if they face the fact that they’re going back, are they are going to be faced with something else? You also have to be responsible for the fact that if that doesn’t stop, you must persist, and accept the fact that, if you don’t, then you could, somewhere down the line end up with something so serious that it’s only going to be palliative. (Interview 2, Participant 1)

Conflict

Within this theme, managing risk was related to primary care focus on targets, conflicting opinions about the role of non-clinical staff and about the worries and tensions generated by cancer awareness campaigns.

Prevention versus target-driven care: Primary care staff considered cancer a public health priority but some felt that there was a tension between adopting preventative approaches in the practice such as promoting cancer awareness and early presentation and the way that primary care is currently funded through achieving specific targets mainly relating to the management of long-term conditions (Quality and Outcomes Framework): We're not as good with public health, with local public health initiatives, as maybe we should be necessarily. It's just time to do things, and those things aren't required of our core business, and when you have a very detailed contract that tells you what you will be paid for doing. (Interview 2, Participant 3)

Staff roles: There were conflicting views around the role of other practice staff in managing the risk of cancer detection and awareness, in particular with regard to reception staff. Some staff viewed the reception role as a health advisor, whereas others perceived their role to be purely administrative. Additionally, there were reservations about the ability of reception staff to relay cancer messages and how the public might feel about receiving health information from them: You're passing clinical responsibility to people who are non-clinical. It's alright for patients to speak to them, and that's fine, but, I'm not gonna use the receptionists as a source of information […]. I think anything clinical should be passed to the doctor full stop. I don't think there is any other role for the receptionist. (Interview 4, Participant 3)

There were also concerns about potential litigation issues if reception staff were to give advice and how this could impact on the practice: I think it’s also worth mentioning at this point, because of our roles, how they are, we get a lot of patients not happy about us supplying information, because we’re not allowed to diagnose, obviously for obvious reasons, but if you was to imply something, that could come back on us twice as hard because you'd implied something that could be wrong, and therefore it is now your fault. (Interview 1, Participant 1)

A further issue associated with staff roles in helping to manage risk was the identified benefits of having a chain of communication between all practice members. For example, receptionists being able to ‘raise issues’ with the doctor if they know someone is coming in who has symptoms the doctor should be aware of but the patient ‘may not say anything’. This can also work the other way: Patients that I worry about, I will leave messages. I’ll mention to reception or mention to people that I want to follow them up. (Interview 6, Participant 3)

Others felt that the focus on the long-term conditions might provide opportunities for practice nurses to be more involved as they were often seeing patients who might be at higher risk of cancer because of their age, disease condition or lifestyle behaviours: Chronic disease, yeah, so diabetic, high blood pressure, chronic kidney disease, asthma, most patients will come and see the practice nurses for routine bloods, blood pressure, weight, everything like that. So often, GPs don't always see them, I mean they do the medication reviews, but, we flag to them anything that we're worried about. (Interview 2, Participant 4)

Some could also see a role for members of the wider practice team: We'd say ‘well who are the district nurses already going out to?’ You know, you can work with your local pharmacists. (Interview 2, Participant 2)

Cancer awareness: Although cancer fear was commonly acknowledged, staff were divided as to whether patients were afraid to consult the GP with cancer symptoms. Some felt that unhealthy lifestyle choices contributed to patient reluctance to present with cancer symptoms: The cancers where they feel that they may have contributed to it, like smoking, they tend to ignore because they don’t want to be told that it may be their fault in a certain way, and they don’t want to give up the lifestyle. (Interview 6, Participant 4)

Cancer awareness campaigns were felt to be important, although those who presented to the practice following the campaign were more likely to be those at least risk: It's the people who never come to the doctors that you want to hit, not the people that were already coming in anyway, and they tend to be ones that see those adverts. But then if you can get one person who wouldn’t normally come in and you catch them, then it’s better. (Interview 5, Participant 1)

Campaigns were also felt to create extra work for all practice members. There were complaints that cancer awareness campaigns tend to run without consideration of other local or national campaigns which may be running simultaneously which increased the risk that practice capacity to safely respond to patients was compromised: It’s like it's alright saying putting in place to get them in, but it’s the sheer volume, isn’t it? You can only cope with so much can’t you? (Interview 5, Participant 1)