Table 5 Example quotes (from interviews and focus groups) for each of the six domains

Ways of organising care

National

“Yeah, we’ve been running our multi-specialty clinics for about 18 months now in our new Rare Disease Centre” (interviewee, health care professional)

Hybrid

“So, [Place 3] is our lead paediatric centre, so they see all the local [Place 3] patients, and they are our hub, we are a spoke, so we look after the patients locally in [Place 2]. But [Place 3] very much do like the guidelines that we follow and everything like that, and they are available to contact […] and like I said once a year they will see every patient in our clinic” (interviewee, charity representative and health care professional)

Local

“I live in deepest darkest, it’s rural [Region 1], nearly as far away from the central hospitals of [Place 3] and [Place 2] as you can get. So I want all my care in the community and that of my son, I want everything down here, because you know, there’s no public transport, there’s no, I mean, literally there are no buses where we live, anywhere. To get anywhere, yeah, there’s just nothing. And so we need something that is definitely in the community, and also communities can be very different” (interviewee, patient group representative)

Ways of organising those involved in a patient’s care (including professionals and patient and/or carer)

Collaboration between many or all of those involved

“The [rare condition x] clinic does try to address some of those deficiencies by providing a platform for coordinated care. […] they can come to the clinic here and see six different specialties simultaneously, and those different specialties can then try and formulate a care plan which incorporates aspects of each specialty’s contribution” (interviewee, health care professional)

Collaboration between some of those involved

“But what we try to do is to ensure that there is a joint transition clinic between the paediatrician and the receiving adult clinician and a visit to the hospital, which is usually supported […] by one of the workers from the children’s unit” (interviewee, commissioner)

Lack of collaborative working

“My experience currently of coordinated care is that there is none. It sounds like a complete and utter fantasy to me” (focus group participant, parent/carer)

Responsibilities

Administrative support

“We’ve got an admin person and she’s quite instrumental at helping us set those up as well […] so that’s a useful, really useful resource that we have “ (interviewee, health care professional)

“Yeah, we have a—when a patient is new to the service they’ll get given quite a lot of contacts, including our health email” (interviewee, health care professional)

Formal responsibilities

“there could be a stratified level of lead with a, sort of, triangle, an upturned triangle with a base at the bottom, the pinnacle at the top, and then, actually, the other way around, that the digital is at the bottom along with the smallest amount of care, and then, you know, you might have a patient requiring, you know, a quarterly or even a monthly telephone call with the coordinator or the community nurse, or whatever. […] Certainly, you start with digital and then you would have a monthly phone call or a quarterly phone call depending on what the anticipated need of that patient is, and then it could be escalated up as required” (interviewee, commissioner)

“I guess it’s fairly, sort of, just everyone, sort of, chipping in, but I guess, obviously, the consultant’s there and, ultimately, they will try and… You know, if we’re struggling with it, then they might, sort of, take more control of that conversation and be, like- or suggest, “Why don’t you do it like this?” but, generally, it’s, kind of, us just, sort of, negotiating between ourselves” (interviewee, health care professional)

“I think that a GP is the closest thing I have to a care coordinator […] feel like they might be best equipped to sort of coordinate care if they had more time and training to do it or even budget to do it” (focus group participant, patient)

Supportive roles

“but they [patient support groups] are very good at picking up the pieces, supporting patients and providing information that the health care professionals don’t provide, so they’re key I think” (interviewee, health care professional)

“I’m pretty much [Name 1]’s care co-ordinator. She sees about 15 to 16 different specialists” (focus group participant, parent/carer)

How often care appointments and coordination take place

Regular

“so there could be kind of like different levels of how often you need to see people, but I think definitely for us it would be that it would be ongoing at the minute” (focus group participant, parent/carer)

On demand

“I find sometimes if you have yearly or six-monthly appointments time and time again, they can be a bit fruitless” (focus group participant, patient)

Access to records

Full access

“Well, that gets us back to the electronic patient record, doesn’t it? you know, ideally, I think there should be an electronic patient record that is accessible to everyone involved in someone’s care. Unless that is available, communication always ends up as a weak link, doesn’t it?” (interviewee, health care professional)

“I just want it to be shared with me, and it can’t, and they never let you see everything” (focus group participant, patient)

Restricted access

“Yeah, so in essence, the way…what I’ve just really said, I think the information needs to be available to all who need to have it, obviously with appropriate restrictions” (interviewee, health care professional)

“I would like something like that on my health records of who wants to look at it, with a little bit of why, then yes, I’ll just tick yes, but also, I’d like a list of who has accessed it. […] Because I want to know who’s reading my, you know, someone did say at one time, “Oh, the psychiatric team are looking at your notes,” I haven’t given them permission to do that. […] You know, why are they looking at my notes and for what reason?” (focus group participant, patient)

Mode of contact

Information sharing

“Well it is having it, so basically so there is communication from one place to the next. […] if everything’s joined up beautifully electronically, that’ll be there anyway almost” (interviewee, health care professional)

“it’s really helpful that there’s a sort of overarching operating policy or operating manual for any service” (interviewee, commissioner)

Care and coordination appointments

“there needs at least to be a connection with a multidisciplinary physical structure […]. And otherwise the coordination of care could also be digital, as we said beforehand. You know, it could be on the cloud” (interviewee, health care professional)

“a new diagnostic result. I think this requires face-to-face contact with, you know, an expert or a coordinating clinician. This is, you know, it’s like giving someone a new name. So, I think it is very important that there’s a face-to-face contact with a medical professional when this happens. Then I think there is a need for face-to-face contact when there’s a new kind of clinical or medical complication, but that face-to-face contact need not necessarily be with the coordinating clinician; that could be with the relevant clinician” (interviewee, health care professional)