Table 5 Care from metastatic breast care nurse (when available) was appreciated, valued and beneficial

Valuing breast care nurses’ accessibility, availability and responsiveness

‘[The breast care nurse is] always saying, “Just let me know if there’s anything I can help with.” And I know obviously she’s really busy, but she totally manages to get back to me.’ Nicole (diagnosed 1 year ago aged 41; interview 3)

‘You can’t get in touch with the oncologist all the time. They’re too busy saving lives. Her advanced nurse is fantastic. So, you can ring her. Obviously you can’t on the weekends, but you can ring her and get advice.’ Diane (diagnosed 7 years ago aged 50 years; interview 2)

Filling a gap: coordinating care, providing much-needed information, emotional and practical support

‘My oncologist is great, but you have to have appointments … When I was feeling down, I messaged [the breast care nurse] about that and she gave me a couple of names for a psychologist. So, because of her, I was able to get onto the person I’m seeing now, and if I have issues I can just email her. When I’m having Herceptin every three weeks she often will just come down and touch base, which is good to have that continuity … So yeah, that’s terrific, to actually have someone. One person, not an organisation, but one person that knows what I’ve gone through or what I’m going through and who can refer me and has the knowledge to actually point me in the right direction and help me, is terrific.' Kara (diagnosed 8 years ago aged 49; interview 2)

‘[The breast care nurse] breaks it down into plain English. If you’ve gone for an appointment and [the oncologist] is talking in their medical jargon and that sort of thing and you’re not really understanding and they’re trying to rush you through the appointment because they’ve got 10 other patients behind you.’ Rebecca (diagnosed 4 years ago aged 47; interview 1)

Providing reassurance future needs will be met, especially towards end of life

‘I do like knowing … there’s a metastatic breast care nurse, even though I don’t [currently] use that service … Just to see that and know that [the metastatic breast care nurse] is there.’ Janet (diagnosed < 1 year ago aged 60; interview 3)

‘Having a metastatic breast care nurse has been amazing, because I know that I now have a resource. Because you can’t do that with your oncologist. They’re busy. You can do it when you meet them. But now knowing that I have a nurse who I can say, “I’ve got this.” Kara (diagnosed 8 years ago aged 49; interview 1)