Table 3.

Categories and original data from the theme ‘Coordinating care and self-care (getting the diagnosis)’

Category	Data
Examples of coordinating care	[To interviewer] The [medical correspondence] is upstairs, so this is from this time last year, really, mainly letters of appointments and everything. But that may give you some idea. (Carer of P9)
Burden of coordinating care	Well, of course, if I phoned [GP practice] for [Participant], I always phone a few minutes before 8:30 and you can’t always get anyone and then you phone again and it’s engaged, so you just have to keep trying. (Carer of P6)
Advocating for participant	Participant: Yeah, because we did find, you phoned the secretary, didn’t you and you said to her…
	Carer: Well I asked what number he was on the list and she said number 16…the following week I thought I’d ring… So I rang her again to see what number he was on the list then and she said number 16 and I said, “Have they not done any operations in the last week?” “Oh yes, loads” she said, “but they were all emergencies”. And I said, “Well I would have considered this as an emergency really, if it’s to do with his heart.” (P12)
Self-care	I usually say to him so just sit down and get your breath back. Get yourself settled down, and see how things go, and he usually calms down. (Carer of P13)