Table 3

Themes and illustrative quotations

ThemeSubthemeIllustrative quotations
Certainty of knowledge of the allocation systemPerceived certainty
  • “Well I know that erm, the individual recipient has to match the donor with a blood type and antibody type and erm, I think there are 6 different numbers you've got to match with, or as near as a match with, before you can actually match up” (Man, WL pre-dialysis).

  • “It goes by tissue matching. Basically like the lottery. I think you get, there's six things they got to match and the closest match, that's how they allocate the kidneys they give it to the closest match” (Man, DD transplant).

  • “A lot of it goes on age and um compatibility so I believe the blood group is one of the first things” (Woman, (non-related) LD transplant).

  • “I understand it's prioritises people who have been on the list for longer, waiting longer” (Man, WL CAPD).

  • “I know they like to have as good an age match between donors and recipients as possible” (Woman, (non-related) LD transplant).

  • “As far as I know obviously it's all computerised and it's the best match who gets them” (Woman, (non-related) LD transplant).

  • “Well as I understand it um at (NHS) Blood and Transplant have a national allocation system. They, that essentially works on a combination of blood type and things like that and tissue typing, the kidneys are allocated on best match but that is flexed by need and time on the waiting list. So you have a combination of best match, overridden by someone who may have an urgent need or someone who spent an extremely long time on the waiting list” (Man, DD transplant).

Knowledge uncertainty
  • “I don't know, I don't know what the system is” (Man, HD following failed DD transplant).

  • I don't, I haven't got a clue how they're allocated” (Man, (related) LD transplant).

  • “I pretty much confess to a certain amount of ignorance because when I had my first one there was a points system and I was a young father, 40, and as I said to you before they wanted to try and transplant a few people early on, so I did, they claim, they say there's not a points system any more but I think probably some people's need is greater than others. And so I'm a little bit in the dark” (Man, WL HD).

  • “I don't know masses about it I've gotta be honest but my, my guess is they, erm they would look at how match(ed) the kidney is, they would look at how long people have been on the waiting list, they would look at probably age, I would say those are probably the key things, how long you've been on there, what kind of a match it's gonna be for you and what age, say how much kind of benefit you're gonna get from it” (Man, (related) LD transplant).

  • “Well you get slightly different stories from slightly different people it has to be said. Um you know allegedly there's not a top of the list; right I mean allegedly it kind of works by a points system and all this kind of thing. But, um if you, I mean I only know in my personal circumstance I've been told that you know, I am now near the top of the list so there obviously is a priority sort of system” (Woman, WL predialysis).

Evaluation of the systemPerceived fairness
  • “I think the guidelines are very fair! I mean it's unfortunate if you've got a, a different metabolism as much as you're a different blood group or your whatever it is, the kidney doesn't match” (Man, DD transplant).

  • “I think it's fair, you know I don't think anybody should be playing God and deciding ok this person is more needy therefore you get it. Sometimes it's unfair when you see like, somebody who is young, with family and stuff not getting one, but then I wouldn't want to be the person on that board deciding between that person and somebody else. The way they do allocate kidneys is much more neutral” (Woman, DD transplant).

  • “Not knowing enough about how it's allocated, I would have to assume it's been set up in a good way that it is fairly fair … I would just have to assume that it's been set up in a good way so” (Man, (non-related) LD transplant).

  • “(It's) probably not a fair system but I mean there's also things like I mean I know it shouldn't matter but I'm not sure geographically um, I mean allegedly it's all one system and you would get a kidney you know from the south of England or whatever but … um technically everybody should have an equal chance, I'm not entirely sure that's how it works. But I don't think that's necessarily wrong” (Woman, WL predialysis).

  • “Well not knowing enough about how it's allocated, I would have to assume it's been set up in a good way that it is fairly fair but um, so yes I do not know all the ins and outs of the allocation system so I um, I would just have to assume that it's been set up in a good way” (Man, (non-related) LD transplant).

  • “I suppose the consultant sees the patient and we should all trust the consultants that they're gonna be … if there's fraudulent or back-handed things going on then if we can see everything's kosher and they're making the right decisions for the right reasons” (Woman, predialysis DD transplant).

  • “I hope that it is (a fair system). I don't have any knowledge of it but I hope that there is and they're not cheating me out of a kidney!” (Man, WL CAPD).

Patient suggestionsMedical priority
  • “I suppose priority would be um people who really needed it if they were ill. But then I think you have to look at, there's so many points to look at isn't there. You've gotta be healthy enough to receive it. It's no good going through a major operation if you … you've got to be fit enough to have it)” (Woman, HD following failed DD transplant).

  • “But I think that because of the time and the money it costs I think the money should be best spent and the person most suitable to that kidney … the one that's most likely to be successful” (Man, (related) LD transplant).

  • “And if it's so much to do with the individual then I guess it has to be um a match, a match basis like they're on cos they, ultimately whether it's going to work or not, medically, whether it's going to work or not, they don't just have to take the gamble medically on that and the best match has to be the thing that takes priority over everything. Always cos then the long-term prognosis is what they care about” (Woman, (non-related) LD transplant).

  • “If you give a kidney to someone who doesn't best match it, it might only last them an hour or a day and then it's wasted. Someone who's a 100% match it could go forever and forever, you know it could last them forever” (Woman WL HD).

  • “Well it shouldn't really matter because as I say it's only if it's a proper match. I mean obviously if you've got a guy with a couple of kids and a guy at 60, then it's the same match, a proper match then obviously the younger person should get it. But there's no point. They match the kidneys at present to the age group if they possibly can. I mean there's little point in putting a 60 year old kidney into a 20 year old is there? It's got to be a match” (Man, DD transplant).

  • “I suppose like people with the worst kidney function obviously need a kidney first” (Man, DD transplant).

  • “Well it's important to give it to the person who needs it most I think” (Man, DD transplant).

Increasing life expectancy
  • “I mean if you had an 85-year-old who's been on the waiting list for goodness knows how long, and you've got a 30-year old and a kidney comes up and it's suitable for both of them, I would have thought that common sense would say the 30-year-old would get it” (Man, pre-dialysis, LD transplant).

  • “You have to figure out how old are people who receive a kidney, they're more likely to have other health, health side effects than someone who's younger… and also if you're older you know, and you're like a widow or something then your social life is gonna be less than someone who's younger you know, who's just got married and has got kids and stuff like that” (Man, DD transplant).

  • “I've lived my life. I'm 66 now and if there was a young person lying in bed beside me and two of us could, I would say give it to that, give it to that young life. Yes I would. But that's my personal thought. So I've lived my life, this guy's just starting out, you know” (Woman, DD transplant).

  • “If you were something like 80 you wouldn't expect to live more than another ten years or something like that, where if you get it when you're 20, you could live another 60 years or something like that. So um, so yes I think it's quite important obviously if it can give a longer, if you're saying if it can give a longer lifespan then it's, um, that should be weighted into it” (Man, (non-related) LD transplant).

  • “Well if that person was the main parent and they got two kids whatever, and if that person doesn't survive because they didn't receive a kidney, and then the kids have to go into care then you know there should be some priority over that [when] you've got two dependants, you know, little ones to look after (rather) than someone who hasn't got anyone (to look after)” (Man, DD transplant).

Priority based on recipient factors
  • “I had a two year old child when I first had a transplant so I mean, you could argue that there was a child dependent on me but that, I‘m no more special than anyone else” (Woman, WL predialysis).

  • “That's their fault (they had children)! If you choose to have children, you don't think well if I have more children I'm more likely to get a kidney transplant. No that's not fair” (Woman, pre-dialysis DD transplant).

  • “I think everyone should be treated equally whatever age” (Woman, DD transplant).

  • “I may have been more predisposed to say you know that younger ones should have priority, but since my father died I would have argued very strongly that he was entitled to just as many, you know as equal an opportunity as anyone else” (Woman, DD transplant).

  • “I mean people might say oh yes you know she's a mum and she's got two young children, she should have priority whereas that's chap's 70 and shouldn't … I don't think that's a fair way to do it because who's to say, who's to judge that that person is more deserving of it, or would benefit from it more? I think that has to be a medical decision” (Woman, WL pre-dialysis).

  • “Why should someone of a younger age be more entitled than someone of an older age?” (Man, (related) LD transplant).

  • “If a young person has a chance of a decent life but then a middle aged man wants a chance of a decent life, he's got a family. He may be older, he's got a family and you know you can get to my stage of life and still have a family, still have a wife and you still want your shot! I think everybody should have an equal shot” (Man, WL HD).

  • “You think about it people go on the transplant list, on the donor list then they should be worth more, get more marks than people who are not on it. So if you've been on the transplant list 20 years, and on the donor list for 20 years and you're an equal match as somebody that's not on the, on the donor list, you should give them priority” (Man, pre-dialysis DD transplant).

  • “If people are grossly overweight, diabetic you know I mean a lot of, I mean you could argue the case all these people are sort of self-inflicted like you know?” (Man, LD transplant).

  • “I think people uh, who are extremely ill and who deserve it, which for me would be young people, people with families, that kind of thing” (Man, WL pre-dialysis).

  • CAPD, continuous ambulatory peritoneal dialysis; DD, deceased-donor-kidney-transplant group; HD, haemodialysis; LD, living-donor-kidney-transplant group; Tx failed, patients whose transplant failed; WL, patients wait-listed for a deceased-donor-kidney-transplant.