Table 2 The current pathway as a fragmented pathway with illustrative quotations and questionnaire data.
Sub-themes | Illustrative quotations | % of participants agreeing with these statements in the survey |
|---|---|---|
A postcode lottery | ‘…we have had problems where one sister lives in the X area, another sister might live in Y or Z or somewhere and they’ve not been able to access the screening that their sister has. So, for example, we might have started their mammograms at thirty-four the sister can’t access any screening locally until forty. So, we know that there are national variation in the way that the guidelines are interpreted. So, it’s very much a postcode lottery, I would say overall.’, Family history clinic 3 ‘…because at the moment there is no specific national funding for that, and so for most services are, you know, offering that based on some local regional arrangement and I think it would be preferrable to prevent a postcode lottery, that that was nationally funded. Because at the moment we know that there’s considerable regional variability and how moderate and high-risk breast screening is provided’, Genetics counsellor 3 ‘Interviewer: So, who discuss risk reducing medication? Participant: It’s not overly discussed at this Trust; we work under the umbrella of X and it’s not overly something that is normally given as advice from them for us to do’, Family history clinic 5 | The current pathway is a postcode lottery, as different services and varying age criteria (for women under 50) for specific services (e.g. mammograms) exist across different regions 63.7% |
Patchy | ‘I think it’s patchy. As a woman with a family history, I think it very much depends who you meet on your travels whether or not you’ll get picked up and get the appropriate management. That’s the honest opinion’, Secondary Care Breast Surgeon 2 ‘I suspect it’s about as patchy as everything else in this world. So, I mean there is two acts of access, there is access to a service in that there might not be a service [….] patchy provision a service and I suspect that there is even more socioeconomic and race access to these services because of all the usual socioeconomic and racial ethnic issues around access’, Screening 4 ‘At the beginning I don’t think GPs even want to prescribe… That’s a whole can of worms, I mean… So we tell our patients about risk-reducing medication and then we bat it back for the GPs to prescribe. Some of the GPs don’t want to prescribe it, they don’t really know an awful lot about it, and therefore they feel actually we in secondary care should be prescribing it…’, Family history clinic 1 | Patchy can be used as a term to describe systemic inconsistencies and variations in the pathway (i.e. differences in individual GP knowledge on risk assessment and differences in access amongst socioeconomic groups) 86.3% |
Opportunistic | ‘But at the moment, that person has to come and say, ‘I’m concerned’, and then the GP has to refer them, so that means that it is opportunistic and it’s not systematic, so it means that it’s going to be a bias towards those people who are higher education, more well off, and it’s going to be less equitable for those people who are poorer and don’t know about these things and don’t know about access’, Oncologist 2 ‘So first of all it’s obviously reliant on self-presentation. So we absolutely know from data to our service that we have a bias select of cohort of predominantly white British patients. If you don’t speak English as a first language, even if you’re white, if you come from Poland or Spain or anything like that, we significantly… ’, Genetics counsellor 2 ‘Oh yeah, yeah. [Reading slide]. Yes, so I’d say that we don’t typically discuss tamoxifen or chemo prevention with all moderate risk, because I think NICE guidance is too considered in that group, and I don’t think, so I don’t think it’s discussed with everyone.’, Genetics counsellor 3 | The current pathway is opportunistic because it depends on women’s self-presentation 90.8% |