Table 2 Verbatim quotations from participants illustrating their experience of transition

Patient Involvement

“I came out of the operation and didn’t have much bruising but later on I got really bruised, like 6 in. of bruising, but I didn’t mention it. The hospital didn’t tell me why so I asked my sister who is a GP. This was a normal thing, they should know that it happens. I left the day after the operation. It was busy so I didn’t have much information, I wanted to ask some questions but I couldn’t.”

Medication management

“I’m used to being independent but they are treating me like a kid, my condition doesn’t affect my ability to take pills. Sometimes I had to sign a form to change my medication but didn’t know why they would change the order without asking me. When I went home I didn’t really know what they changed and the medicines made me drowsy. I just think that someone like me, reasonably fit, should be allowed to dispense their own medicines.”

Discharge arrangements

“Some people were arrogant, me and my wife have 30 years’ experience with my condition and sometimes people are very busy and do not listen to me, I’m treated like a child.

Providing psychological support

”I saw a lady being informed that she had cancer and she was on her own, no family member was there. And when they asked if she had any questions she said no, but clearly she didn’t know what was happening. I personally talked to her nurse and requested her clinical staff to talk to her and her family more about her condition and the cancer.”

Feeling of safety

“I didn’t have the information I needed about what to do at home. I live alone and I had stomach pain, abdominal pain, I had heart problems and have been to the emergency department three times since we spoke”.