Selected quotes illustrating the themes
| Quote | Theme 1: Coproducing care with PLWD and family carers |
| 1 | as a family member you're the person who knows that person better than anyone else so you can see when it's not, when it's not right, when it's going wrong—Carer Diabetes 4* SE |
| it was like when she had her cataract done, I actually went into the room with her… you know, because one nurse kind of looked at me and she said ‘no, if you wait in the waiting room’, I went ‘well, no—my sister has a memory problem so I'll have to stay’—Carer Diabetes/VI 6 SE | |
| 2 | her feet were black and I was concerned, because we've got, in the paternal side of my family, she's got aunts and her mother was blind, aunt had amputation of the toes—Carer Diabetes/VI 3 SE |
| 3 | and now I go with him for all his appointments…I have got a notebook there which I use to note everything, you know, when it started [sound of paper rustling] for myself, for my own, you know…I used to record everything, ‘seen by so and so, what prescribe and when to be seen again’ and all these things.—Carer diabetes/VI 2 SE |
| 4 | you see one person one time and then you'd have, tell them what they need to know and then you see the next person and they don't know, do they. You have to go all through it yeah, you have to start again. But I mean, that actually is a problem with the NHS all the way through, I mean, because it's a kind of, you know, you're not always treated as a whole person, you're treated as individual bits, aren't you—PLWD and Carer VI 7 SE |
| 5 | the greatest difficulty is when that individual lives alone and doesn't have an able partner, because then their care can become very disjointed or they're not, they're not able, often they, an appointment's made or they, and they won't answer the door or they forget and so it's when somebody's on their own that you have the biggest issues and lack of joined up care—Physiotherapist 1 SE |
| 6 | do you remember that mum, you know your method for testing your blood that you'd used for years, last Easter the nurse came on Maundy Thursday, the day before Easter and she gave you a new machine to do it…And you could not fathom it at all…No, no, none of us could, could we? It was chaos…—Carer Diabetes 4 SE |
| 7 | gradually I took over the medication, each step was really painful, you know ‘cos he always used, he was on by the time when he started sort of losing grip on things he was on a lot of medication, six or eight different pills a day and he would line them up and take them one at a time and so on, and then I started putting them in dosette boxes and then he started not remembering to take them and then he would take them at random so gradually I took over the whole thing and I mean there were a lot of tears and agony—Carer Stroke 7 SE |
| 8 | I know yesterday you had a bit of a problem because you thought, when I phoned you up in mid-morning you thought that the lady hadn't been to give you your medications and your Cornflakes but in fact she had, hadn't she? (Carer Diabetes 4 SE) she had, yeah. (PLWD diabetes 4 SE) so mum ended up having two breakfasts yesterday—Carer and PLWD diabetes 4 SE |
| 9 | the Alzheimer's Society have been fantastic…Oh the Alzheimer's Society, oh .. that's a godsend that is, absolutely godsend, yeah—Carer Stroke 4 SE |
| 10 | they have a diabetic nurse and she rings up every now and again to get her readings I don't think that's very good, that's one of the services that I don't think is very good to be honest.—Carers Diabetes 7 SE |
| 11 | [GP] yes, now she's gone ahead with loads of things because she says ‘are you getting this, are you getting that,’ we told her what we'd had and what you know what he doesn't have, so she says ‘right I shall get in touch with these people’ she said ‘and help you’. Now as it happens she must have done very quickly, because we had a lady from the social services yesterday—Carer Diabetes NE |
| 12 | in fact when I know that I've got one of my patients with dementia booked in I will ask, I will send an email in advance to the administrator, to the receptionist to sort of call them on the day to remind them—GP 2 London |
| Theme 2: Matching management to the nature and presentation of dementia | |
| 13 | we had a timer at the beginning and it bleeped when he should take a tablet, well he would go and turn the bleeper off and forget to take the tablet so—Carer VI 6 SE |
| 14 | another risk that was highlighted to me recently was a patient in this circumstance who was previously self-managing, District Nurses had to take over, but the insulin has to stay in-house and the nurses don't carry it around, so this patient was, it transpired this patient was given her own insulin and the District Nurses were coming in after and administering again, it took a while to establish that—Diabetes Consultant 2 FG1 SE |
| 15 | I think as you get more experienced, it's quite a difficult decision but as you get more experienced your decision changes. I'm certainly quite…personally, I don't know how others are but I certainly am quite aggressive about cataract surgery in people with dementia, I think that it's got a very low downside, the chances of something going wrong are very remote and if you make it work and you make them function better then fine.—Ophthalmologist 1 London |
| 16 | I wouldn't refer someone who was uncooperative … I have had a patient who got up in the middle of a cataract operation and refused to have anything further done and lost the vision in his eye—GP 4 SE |
| 17 | just training really, just I think we just need that extra training just to, in this particular aspect, clinical and awareness of what to do—Senior Orthoptist, VI focus group, East of England |
| Theme 3: Working across disciplines and organisations | |
| 18 | I think new services like in L1 [London Borough] we have the community matrons have actually been of great help because they are more of care co-ordinators which I think do help these people with comorbidities in the community—GP 2, London |
| 19 | but obviously anywhere new that we go, like for this colonoscopy and all that sort of thing, I always mention, you know, ‘he has dementia quite, quite severe dementia’, I think when we went for a blood test for this colonoscopy it wasn't on his notes there, although it was on the original colonoscopy referral sort of thing. So it seems that within the hospital setup they don't always transfer all relevant information between departments—Carer Diabetes 1 SE |
| 20 | and I think that's a key point I was going to make is one of the big stumbling blocks we have is the fact that services or parts of different Trusts so the Mental Health Services sit within the H Partnership Trust so they don't use the same system as us so we can't share notes, the GPs use a different system again so it makes it very difficult to communicate to even find out what services people are under, you know, if that could be improved, if we could all be on the same system that would be good [laughs]—Physiotherapist FG SE |
| 21 | memory loss, no, they're not interested in that, they're interested in treating the symptoms of diabetes not somebody else's, it's almost like somebody else's problem but I don't mean that hard heartedly, I mean that we are dealing with this bit, there's nobody, other than my GP looking at the whole picture—PLWD Diabetes/Stroke/VI 1 SE |
| 22 | but if you're reliant on District Nurses for example who got their own, you know, they've got their timetable of what they need to do in their work to get through, and they have to administer it at a set time and that can be incredibly disruptive to the individual—Diabetes Consultant 2 FG1 SE |
| 23 | then just to simple tie up the medication and monitoring of diabetes with the provision of meals is basically all that needs to be done. And I think that's where it falls apart a lot of the time because people who can't self-manage will often be reliant on a district nurse or a community nurse to perhaps come in and oversee the medication or give them their Insulin, but they won't be responsible for ensuring that that person has their breakfast or, so you get big gaps between one and the other and that really is not helpful. And that's how people do end up having falls and being admitted to hospital, yeah—Diabetes Consultant FG1 SE |
*Each interview was given a unique number.
FG, focus group; GP, general practitioner; NE, North East; PLWD, people living with dementia; SE, South East; VI, vision impairment.