We conducted twenty three interviews; eight included both patient and carer (Table ). Eleven patients were female and twelve male. Ages ranged from younger than fifty to over 85, with most aged over 75. Participants reported between two and nine health problems. Conditions were varied and often severe: they included chronic back pain, cancer, diabetes, arthritis, COPD and heart problems.
Respondent socio-demographic details
No participants reported experiencing distinct and explicit care planning discussions, as defined earlier, or receiving written documentation setting out a negotiated care plan. They were unaware of the term care planning and what it might involve. Some components of care planning were, however, identifiable in participants’ reports of care. We outline the nature of these components, along with barriers to their effective implementation.
The reactive nature of care planning
Most participants had some form of discussion with their health care professionals which included components of care planning and was aimed at assisting them in managing their condition better. These discussions were not overtly designated care planning meetings; instead they occurred throughout participants’ routine and emergency contacts with health care professionals, primarily GPs but also hospital doctors and nurses. Matters of chronic illness management were therefore dealt with on a predominantly reactive basis with a variety of providers over a period of time (see Table for an illustrative case summary).
Illustrative case study: John and Sheila
"Oh he (GP) did, we sat down and discussed it all, showed me, he drew little pictures and things and of course he knew my nursing background so he was able to explain it all and I was able to understand."
Participants rarely reported discussions about care covering the full range of recommended care planning components, including the provision of information, support for self-management and the coordination of care (see Figure );
"I: Do you ever feel that you’ve had the opportunity to discuss, say, with your GP, sort of an overall view of your healthcare and your health and how you’re managing that?"
"R: No, I don’t think so. Not a lot of what the future might hold, he just says, well, this could improve a bit or it’s definitely going to get worse."
Communication of information
Experiences of the communication of information by professionals varied. Many participants felt professionals provided, overall, sufficient information about their condition, although understanding was typically built up over a number of years [See Table ].
However, some described a frustrating lack of information, with two stating health care professionals appeared unsure about their condition or appropriate treatment.
Perceptions of the effective flow of information between professionals and patients were linked to what was considered continuity of care. Many participants wanted to see a GP who knew them, as a lack of continuity meant a perceived lack of understanding;
"… All he (locum GP) will have is the information on his screen which okay I mean technology as we know is marvellous it can, he can learn a lot off that screen but if he is only there for a week or a fortnight there is never going to know looking at that screen what 20years. I mean if you were a doctor and I was your patient, if you saw me for 20years you would know every single thing and you would know when I was trying to con you…
One participant who had experienced years of chronic back pain felt her condition was trivialised by GPs unfamiliar with her case;
"… It’s frustrating actually, you know, because sometimes you get on and you think, oh God, here’s another one [GP], you know, now I’ve got to start from scratch. I mean, they come in to me and say, “so you’ve a bad back love, haven’t you?” And you want to scream. You literally want to scream at them."
Perceived limitations on consultation time also curtailed the opportunities for information exchange;
"It is time pressured. Because really, you only get about 5–10 minutes with your GP, and you’ve got to be right on the thing. Like I’m talking to you, I haven’t had the time to discuss with her things like that, I just go in, tell her what my problems are and how I am. I realise that she’s busy, she’s a lot of other patients to see. So you can’t take that much time."
Support for self-management
A number of participants, usually those who felt they had sufficient information and experience, indicated that they were confident managing their health problems, although often with assistance from paid or unpaid carers. Many were practiced in daily routines including monitoring blood glucose and managing complex medication. Professional assistance with aspects of self-management was evident, for example the advance provision of antibiotic supplies or simple encouragement;
"But if I’m getting windy about it, and sort of a bit cowardly, I will ring up the district nurse, and she’ll say, ‘just carry on Edward’, and she gives you those words of reassurance."
For many, self-management was more concerned with achieving important everyday activities than with specific medical tasks. These included learning to walk without a stick so they could carry a cup of tea or getting out for fresh air;
"It’s a very good Zimmer but you trundle along with it and then you put the brakes on and you sit down, which is marvellous because if I sit down I’m fine. Then I’m up again and do another bit and so I try, every day, and get out a little bit, down to the bottom and back."
A number of participants were trying to cope with psychological elements of their condition, such as the impact of physical limitations and changes, and the perceived need to remain positive for the sake of others. However, these goals tended to be supported by informal carers alone; participants rarely discussed psychological concerns with their health care professionals.
Only three participants mentioned that ‘goal setting’ and ‘action planning’ were discussed at all in relation to their care. One respondent did not remember the process of goal setting other than the term. The two other participants felt the terms were not applicable given their conditions;
"I: And who tends to talk to you about goal setting?"
"R: Usually the Nurse and the Doctor says (about it) there is not much point in that when you can’t walk is there. Which there isn’t, is there?"
"I haven’t really got an action plan....I don’t think you can have an action plan when you’re in my condition of life [paralysed from the neck down]. My action plans is just to try and live life to the full."
During interviews participants often raised concerns about the future of their condition or care. Anxieties included the implications of a hospital stay for further care, a lack of knowledge about available home care support and concern at having to leave their current home if their condition deteriorated;
"But I don’t like the concept of, such as myself, having to go into a home as an alternative. I don’t like that at all. I would hate to leave this little flat and I would do anything to organise help to be able to stay and I think a lot of people would be far happier if that was so."
Participants believed such topics were not issues of concern for health care professionals, and thus rarely mentioned these aspects in consultations.
Coordination of care
Many participants had multiple conditions requiring complex treatment and coordination between themselves, their carers, and a number of professionals across primary and secondary care. Patients noted phone conversations, face to face meetings and letters between health care professionals as forms of communication they were aware of;
"It seems to be working alright. This doctor I see at (hospital) sends letters to my doctor (GP), and my doctor is in touch with them about various things. I’ve just had, a pharmacist across the road, and he’s sent a form to my doctor about this thing. It’s just like a form, informing about my medication that’s going on…"
However, five participants felt that care was not co-ordinated well across different teams and that this was something that was a matter for the health care delivery team to manage over which they had little or no control;
"When you go to the orthopaedic department the consultant that does the arms won’t touch legs. A leg man won’t touch the spines, you know the spine man won’t touch the hip and you have to be referred back to your doctor who then refers you back to another doctor, another consultant and you try to explain to him mixture between the two, he doesn’t want to know because he only does legs, he doesn’t do back… But as you can see is a very difficult situation for the white coats as I call them to understand when they don’t want to talk amongst themselves even in the same department. It’s very difficult."
Patient-related barriers to comprehensive treatment discussions included an unwillingness to engage with their condition – as one respondent (2–4) commented, “I bury my head in the sand as far as my heart’s concerned.”
For a small number, this reluctance to discuss their care and conditions had arisen from the perception that nothing more could be done for them;
"“Mr Jones,” he said, “as I’ve written down, there’s no hope”.... You know we said to him, “You know what is the prognosis?” He said, “You go back home, you go back to bed and you stay there until the end”."
Such conversations were identified as ending any future discussions about care: if there was nothing that could be done, there was no point in planning ahead. As a result, some patients had retreated from seeing professionals unless absolutely necessary.
Only one participant recalled a document which he identified as a care plan, although he had not looked at it;
"Oh yes, the nurses always write you a care pack…Oh yeah, there is a care plan yeah. No, that’s, they do fill in a, because that’s just - I don’t see it as such because, my wife will know where it is and when the nurses come in, the doctor will read that sometimes… And he will, my doctor will read what, like if I’m being dealt with for a pressure sore."
However, from the description above, this is more likely to be a nursing/shared record rather than documentation of the outcome of care planning discussions. Another respondent described completing forms with a nurse about her wishes for end of life care. She did not believe this to be a care plan, but it may have contained elements of advanced care planning.