Cluster A: Personal qualities and relationships.
18. I appreciate the “personal touch”
13. I appreciate the human contact
12. A smile and a warm handshake is important
15. It’s important that mental health care workers are gentle and tender
14. I like it when mental health care workers can sit, talk and take time to just be with me
27. I like it when they just sit with me sometimes
19. Mental health care workers should be good, honest people; showing kindness and consideration
58. It’s important that I am treated with compassion, like I matter
69. People should acknowledge me and respect me.
62. My care worker really listens to me; not just to what I say, but what it all means to me
33. I like mental health care workers to “share” as well as “care”
68. It’s important that they show an interest in me, beyond just the tasks and paperwork at hand
11. Good support leaves me feeling safe and secure
46. I need to feel secure and have mental health care workers give me reassurance
66. I appreciate mental health care workers getting to know me, by visiting me regularly
67. I value care-rs, not just do-ers. I miss the “care” part.
Cluster B: Communication problems.
1. I want mental health care workers to talk to me, not at me.
32. Sometimes it takes me a bit of time to say what I mean
2. It’s important that people listen to what I am saying.
16. I want someone to speak-up for me
10. I feel uncomfortable if mental health care workers don’t speak and understand my language
31. I expect what I say to be taken seriously
73. Some mental health care workers use jargon I don’t understand
60. When they tell me off for doing things myself, I feel like a child
72. Sometimes they don’t look up from the notes when talking to me
36. I get frustrated when mental health care workers don’t pay attention to what I am trying to say
4. I shouldn’t have to speak-up and say “you’re not listening to me”
17. They should explain things clearly to me, and help me to navigate the system
37. I feel belittled when they try to persuade me that my problems are different to what I think they are
49. I feel that I shouldn’t have to complain. They should listen more carefully
3. If I need to complain about my care, they shouldn’t presume it’s because I have mental health problems
50. I’m worried that they will label me as ‘argumentative’ if I complain to them
Cluster C: Feeling powerless
47. I shouldn’t have to ring mental health care workers to chase-up what is going on
56. It is annoying when different professionals don’t to talk to each other
45. I shouldn’t have to be correcting them, and telling them what they need to be doing
38. Sometimes people on the phone are obstructive; they fob me off
Cluster D: In-and-out care.
9. When they are rushed they can’t give you their full attention
25. I sometimes feel like I’m in the way because they’ve got so much to do
35. I don’t feel valued when they are just “in and out”
52. They don’t have time for me nowadays
24. Having to wait for mental health care workers makes me feel unwanted
53. I get frustrated having to sit and wait for the transport in the lounge
34. They should come at a time that suits me
6. Mental health care workers should be on time
Cluster E: Bureaucracy.
41. Mental health care workers shouldn’t be stopped from doing their job by rules, bureaucracy and “health and safety”
5. Services should be available in all areas, not centralised in one area
7. I should have a say in what services are available locally
Cluster F: Focus on life not just mental health
51. I value flexible support; for them to help me with life’s little things that matter to me
23. I like meetings to be interactive; doing things together rather than them doing it all
26. It’s important they support me to do activities that matter
55. The choice of different activities my mental health care workers involve me in is excellent
28. Good support is flexible so I can have variety in the activities that I’m supported to do
29. I like mental health support to keep me involved and busy
74. Some variety would be nice, so that I can be supported to cook
63. My mental health care workers keep me connected and involved with my community
71. Good mental health care workers are an important part of the community
30. Good support brings people together and keeps me in touch
Other items: Continuity of care from people who get to know you
54. There’s a lack of continuity, so you can’t get to know people.
40. I expect new mental health care workers to read my notes before they come.
39. It’s embarrassing to be washed and dressed by a stranger.
57. Some mental health care workers are so fixed in their ways. They just do they job written on their paperwork.
64. I should be asked about what goes into my support plan.
42. They should recognise that if they see me on a “good day”, next time might be a “bad day”.
44. It’s frightening when you don’t know who it is coming to see you this time
59. Care has to be at a pace that suits me. There’s no point rushing me.
70. I shouldn’t be left in an unsafe situation, like cooking for myself.