Table 3

Key themes and illustrative quotes from interviews

PeopleCommunicationThe reason those Meso nurses are there is they have got the time to learn more about it and keep [us] on track with what’s going on (Male, 60–69, Trust B)
Continuity of careI don’t feel as though I’ve been cast off. It’s obviously going to be a different kind of approach [in palliative care] but…we’ve still got that link with [the consultant and the Specialist Nurses] (Female, 70–79, Trust A)
 Family and friendsI don’t know how people could cope, really. If there was no family around and I was the way I was now, I still don’t think I’d be the same person (Male, 70–79, Trust A)
Support groups(We went] to find out more about it and…how other people are dealing with it. And that was so important (Female, 70–79, Trust A)
ProcessAdministrationThe professionals have been very good, the surgeon and the registrar and other people that I’ve seen…It’s admin that really drives me crazy. (Male, 70–79, Trust A)
AccessibilityWe need to have a phone number where we can make the call when it’s necessary. And we know that help is available. (Male, 70–79, Trust A)
DelaysScanxiety, when you get anxious after you’ve had a scan what the results are…there is, unfortunately a general delay across the whole board (Male, 60–69, Trust B)
Falling through the systemYou fell in a bit of a crack for a while, because, although with oncology we declined it…but somehow we hadn’t got it back respiratory care. (Female, 70–79, Trust C)
PlaceDistance, location, parkingI don’t drive. Well, friends have said I’ll take you, but of course, they’re all about my age and they might have problems of their own (Female, 70–79, Trust A)
PurposeMonitoringI’ve got peace of mind, knowing that every so many weeks I’m going to see the consultant and they can monitor the progress and that’s all I really need…How it’s progressing…How to deal with the pain when the time comes” (Male 70–79,Trust A)
Treatment options/decisionsI’d always try those things [treatments]…You’ve got to…Because there’s always something new coming out and that’s what you bank on…That’s what you’ve got to hope for all the time and just go with whatever’s going.” (Male, 70–79, Trust B)
Understanding mesotheliomaThe horrible thing is that there’s going to come a point when I may start to go. You don’t even know the process of dying from this disease. Is it sudden? Or is it progressive? I don’t think anybody can [tell me].” (Male, 70–79, Trust A)
Understanding pathwaysI’m perfectly realistic. I know I’m going to die. I just want some sort of realistic understanding…that I’m living by myself. I’m 75 years old…The hospice group who have been extremely good, they don’t have accommodation. (Male, 70–79, Trust A)
Understanding benefits and entitlementsOnce I was diagnosed, I was immediately put in touch with a charity…They were very, very helpful…looking into benefits…compensation…solicitors…They…know the system, so that helps. (Male, 60–69, Trust B)
Health literacyWe know how to use information…A lot of people… Could be treated without actually having the ability to say, what’s going on? (Male, 70–79, Trust C)
Perception of careSatisfactionI’ve been very satisfied with the team…They’ve been very good to me…The follow-up care that I’ve had…They’ve kept an eye on me. (Male, 80–89, Trust B)
TrustWe trusted [the consultant] implicitly that if there was [another treatment option], they would have said. (Female, 70–79, Trust A)
Second opinionsYou won’t get the help, once you’ve had the allowed treatment…You have to find it somewhere else…Literally, find a trial or sometimes I understand some of the more specialist trusts…trying to find new solutions. (Male, 60–69, Trust B)