Table 1 The overall theme and subthemes that emerged from the interview

Psychological stress of clozapine below threshold neutrophil results

• Traumatic experience

[patient 1] “It is a very traumatic experience and I just have to grin and bear it…I think it is the word red (below threshold neutrophil result) alert the worry I will have to come off clozapine again.””

[carer 1] “She had three red ((below threshold neutrophil) results and during these times it has been extremely traumatic.”

[carer 2] “We were brought to our knees; it was a dreadful time”

[carer 4] “Every time, he is taking off his clozapine he has got to go straight back to square one again, you know, and its harrowing, its harrowing for him because then he has got people around his house every night giving him his medication and putting it up by 25, to get it back to where it should be on his clozapine, you know, it is just harrowing for him he gets so fed up with it”

[Carer 4] “Yeah, it affects us we are worried, you know, we don’t want him going back into somewhere else because he is doing so well on his own and he is doing his cooking, his cleaning and he has his own place, everything he wanted he has got so far, you know”

• Immediate discontinuation

[patient 1] “I was really upset and worried because I did not want to go into hospital and on both occasions [of receiving a red ((below threshold neutrophil) result], I went into hospital, I did not want to be an inpatient… I was really upset and worried as I did not want to go into hospital, but off clozapine I just couldn’t handle life.”

[carer 3] “There were catastrophic consequences, within 72 hours the whole period of recovery was completely, totally reversed, she had a complete relapse.”

[carer 1] “Each red result she had to immediately come off the medication, literally stopped there and then, resulting in physical and mental illness, within a day, she was violently sick and very unwell mentally…By the second day, she was completely hostile and paranoid, and thought Jesus was on an island somewhere paying her benefits, I mean really ill, she was trying to cope, and she was hardly sleeping.”

• Proactive response

[carer 1] “The most important thing is immediate action, we were told on a Friday night, so we were just abandoned. We didn’t hear from him [consultant] until Wednesday, the next week or something. It’s crazy, just shocking. In hindsight, I would have not stopped clozapine, I would have said no, we are not going to stop it until you put a plan in place…A drastic decision was made to cut her off clozapine, there was no plan in place if she relapses, what medication is available instead of clozapine and medication to help her sleep, there was no plan there for six days.”

Patients’, families’ and carers’ priorities

• Staying in the community

[patient 2] “I really wanted to be treated in the community, I think the community needs to improve medication services so that they can treat patients with a red (below threshold neutrophil) alert in the community, instead of going into hospital…I do not mind being a patient in the community, but I just do not like being in hospital.”

[patient 4] “I know when I come off clozapine, I need to be assessed but what I would love to happen is the medication team need to develop so they can treat a patient with a red (below threshold neutrophil) result in the community.”

[carer 2] “It can just rewind everything [recovery/progress], putting people back in hospital, which is the last thing anyone would want.”

[carer 4] “ Yeah, he has his own place and when they’ve taken him off clozapine they want him back in hospital but he is happy he has his own independence and you know, he can go down the shops and buy his own food and do his own cooking and his own washing and stuff like that and that is all beneficial but if you take that away and you put him into [hospital site] and that’s such an awful thing, you know, but he is always being monitored then he hasn’t got much of a life has he as it is, you know, because of his mental state but yeah that’s some of a life where he can do his own thing”

• Contingency plans for red result

[carer 1] “You must immediately put an immediate action plan into place, and I don’t mean in a week or two, I mean at the same time, you cannot remove the clozapine without putting in support, I think that is crucial.”

[patient 3] “I just want everybody to be educated about me, about the protocol (G-CSF)”

[carer 2] “I think the frequency of blood tests should be dramatically increased before removing clozapine, for a specified period and see if those alarming results remain stable.”

[carer 4] There has always been a communication problem ever since mum and dad passed away its been nothing but headaches for me and my brother [brothers name], he has had team meetings with doctors and staff and yet like I said the doctor says something and then that’s it, that’s as far as it goes, it doesn’t go to A then to B and from B to C, it stays with A and I just find it so ridiculous.

• Information on outcomes after discontinuing clozapine

[patient 3] “I didn’t have anybody to talk to, I feel that even in the community they do not explain anything about clozapine.”

[patient 1] “They need to tell me what will happen if I get a red result, whether I have to have blood tests or to start again.”

[carer 1] “I do not remember having any information on what to expect when she came of it”

[patient 3] “It would be helpful, with what withdrawal symptoms you may have, understanding if somebody comes off clozapine how it is going to affect them physically”.

[carer 4] “Yeah, but we didn’t receive any information about it whatsoever from day one, like I said my mum use to do it, she use to go with him for the blood tests and so she would know what was going on, you know, but because we can’t make it down there, it’s like I said we just don’t get any information whatsoever from his care coordinator or social worker, she doesn’t receive anything from anyone. We don’t receive any information from the clozapine clinic whatsoever”

[carer 2] “I mean was completely off; was high, completely high we are sitting in a funeral and emotions are all over the place, you know, and like I said as far as we knew was still on these tablets, but hadn’t been on the tablets since before Christmas day”

[carer 4] “You know, when you’re sitting there, and she is an emotional state, we all are emotional states but especially and when we got to the wake, we started to realise that he has not been on his tablets, you know, he was taken off them before Christmas, but like I said there was no feedback to let us know, so we could keep a better eye on him and stuff. I was absolutely furious about it…”

• Monitoring for adverse effects

[carer 1] “The problem we had with it was that nobody did anything at all and haven’t done in six months to determine the low count, nothing whatsoever…Lack of evidence and overwhelming data to suggest that low count had nothing to do with clozapine, but we were given the red ((below threshold neutrophil) results and were simple told on a Friday night we had to stop clozapine.”

[carer 2] “Nobody monitors or monitored her for 18months now. If those life threatening, potentially life-threatening side effects have no importance and have no reason for anybody to ask a single question about, why is it that red (below threshold neutrophil) results are taken so dramatically differently, it’s a huge contradiction.”

[carer 4] “Then those time they take him of his clozapine and not all the time is it down to the clozapine itself its down to infections like an ear infection.”