Table 3 The need for systemic reform with illustrative quotations and questionnaire data.

Standardised national service

‘I think there needs to be a national strategy for family history and for breast screening generally and I think everybody needs to ideally be doing the same thing because it’s okay, we say, oh well in X [Hospital] we do this, X [Hospital] we do that and we say this a lot because we are doing things perhaps differently than some other places. But I can give so many examples of variation in practice’, Family history clinic 3

‘Ideally, I think that moderate and high-risk screening should be incorporated into the national breast screening programme, and so I think that they should just be part of the national breast screening programme, but that isn’t the case at the moment’, Genetics counsellor 3

‘It looks after population risk and very high risk, that comes under your national screening programme, overseen nationally by NHS England but the risk in between, the moderate and the high risk is not overseen by NHS England, that is a locally managed service which makes no sense.’, Screening 6

There should be a national strategy for risk assessment and family history, ensuring a standardised approach for all

91%

Developing digital and flexible tools

‘I mean, if there was a hub with all the region feeding into a massive… […] where they were screening for you know, other cancers and breast, and … sent their patients into a hub and then… they would have the most up to date assessment tools and organise the screening. I guess that would… Maybe it’s a money-saving idea’, Family history clinic 1

‘…the GPs don’t need to be doing because it could be done at a pharmacy, it could be done … for people filling in their tax return, they don’t need to have an accountant to do it anymore, they can just do it online and we need to make it more accessible and easier for people to do that’, Screening 5

‘So I agree that, I think it’s probably a mixed methods model. So, I think, certainly groups of people who definitely would prefer electronic methods of being contacted, rather than letter, but I think for other groups as you mentioned, people whose maybe first language isn’t English, you know, maybe then some of the alternative ways you suggested’, Genetics counsellor 3

There is an emerging need for digitalisation of the pathway, i.e. digital monitoring, tools for quick triaging, digital family history questionnaires 100%

A shift towards being proactive

‘I think to improve the situation with the current pathway we could promote awareness about family history addressing some common misconceptions […] So, all women get posted a questionnaire for their 35th birthday and proactively asked about family history and whether they’ve got any concerns. At the moment the whole pathway is very opportunistic and the people who are more likely to voice their concerns are the ones who are more likely to present to services which isn’t hugely fair of the underserved section of society’, Genetics counsellor 5

‘That’s exactly what you need. Yes, and also as you say going through the religious groups, community groups, it’s about breaking down barriers…’, Oncologist 2

There is an emerging need for shifting towards a proactive system that would be well-structured and actively reach and support women of all groups 91%

Division of responsibilities

‘You know, you need to understand that data to be managing these patients. That sits somewhere between the secondary care and genetics. It should definitely not sit in primary care. I speak as someone who uses this all the time… There’s risk of harm in identifying the wrong people…’, Secondary Care Breast Surgeon 2

‘Moderate risk patients could then be managed in secondary care by family history clinics and they would be able to have discussions about risk reducing medication, and also a range, appropriate screening. And then again I think that the higher risk patients should be managed through a combination of family history and specialist genetic clinics’, Genetics counsellor 3

‘At the beginning I don’t think GPs even want to prescribe… That’s a whole can of worms… 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

Family history and CGS are best placed for doing risk assessment 82%

Need for funding

‘I think we’re at the best point in time to make those changes. The logical side or the pragmatic side of me is saying there is just not enough funding but I think mentally everybody is ready for that change, more than ever’, Family history clinic 2

‘There is a similar pressure in breast oncology clinics, but I do think that there needs to be funding and provision and part of the problem we have at the moment is there is no funding and provision and that’s why it’s falling in Noman’s land and that’s why it’s weird across the country as to who takes responsibility for this service. Another example in X, the oncologists do the family history risk assessment. When you go to Z they have their own service run by nurses that they’re cancer nurses who belong to the breast surgical department. So it’s very, very, variable…’, Screening 2

Any improvements to the pathway will require additional funding, particularly in family history and CGS. 98%

Strengthening skills in risk assessment

‘I think the other place is GP education. So if we could go into GP practices or we do education and training events… We need to advertise that the service exists. We could let individual GP practices have some autonomy about how they could make their patient population more aware of genetic cancer risk and the enhanced surveillance programmes and that they were entitled to this service.’, Genetics counsellor 2

‘I think identification in primary care or public understanding of what constitutes a risky family history scenario. More awareness in breast units because I think unless you’ve got a particular interest in it, not all of my colleagues would know who require extra screening and who doesn’t.’, Breast Surgeon 4

Clinicians in primary care and secondary care will need education about family history and risk assessment

96%