Table 9 Barriers

Lack of training for non-specialist staff

“None [time spent on training about home therapies]. I very rarely get involved with PD peritonitis but that’s about it, nothing else and nothing on home haemodialysis.” Specialist Registrar, hospital 3, January 2012

“....it was actually one of the health care assistants, I was asking her about something to do with the [haemodialysis]machine and she said “Oh I don’t know what you’re bothered about asking for, you’re not going home…” and I was completely if you like shot down in flames over it. And I’m like I’m asking questions because I’m interested..... I mean for some people they’d just go “OK I won’t bother asking then”.” Home haemodialysis Patient, (24) hospital 4, March 2012

Pre-dialysis education

“Speaking directly to someone who has had it [dialysis], so you’re getting all the unfiltered information…it was useful to be able to speak to a person who had gone through that to give us, you know, warts and all what’s going to happen…” PD Patient, (15) hospital 4, March 2012

Patients’ unmet psychological and emotional needs

“I went through a period towards the end of my preparations for dialysis where I had to go to the doctor with depression because I was just so unhappy because I felt sick every day and my whole life just kind of crumbled around me really.” Home haemodialysis Patient (20), hospital 4, March 2012

“So they focus totally on the practical side of things. Have they done it? Why haven’t they done it? You’re going to die if you don’t do it… No disrespect, but sometime you don’t want to tell them you’ve got a problem… [There’s] a huge mental side to it, well I don’t know what you’d call it, a psychological element they probably don’t quite press.” PD Patient, (4) hospital 3, February 2012

“I have to admit for the first 12 months or so I found it very, very depressing. I couldn’t get my head round it, with these big bloody needles going up my arm, maybe for the next 10 years or so.” In-centre haemodialysis Patient, (9) hospital 3, February 2012

“So quite often people are shocked, you know, they just kind of don’t know what to think really about anything…. I kind of equate it to like the grieving, really they’ve kind of lost their kidneys and it’s almost like a death for them… they kind of go through all those emotions that come with bereavement.” Dialysis unit nurse manager, hospital 4, March 2012

“Some patients need listening to when they’re not well, you know because a lot of them suffer from depression, they get stuck in a rut sometimes, they just need 5 minutes to explain how they’re feeling about their illness”. Home haemodialysis Patient,7) hospital 2, November 2011