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Many keyworkers saw themselves as the patient’s representative and advocate in the meeting (though evidently they did not all discuss this with their patients). They reported that they aimed to convey the patients’ perspective to the rest of the team: “You should, sort of, represent the patients and their preferences” (Nurse, CMHT 3; interview).

Some reported that patient preferences were discussed as a matter of course: “We always ask ... the person who has presented, ‘What does the client want? ... What do they expect from coming here? ... A lot hinges on that ... That’s a basic thing you should be checking” (Nurse, CMHT 3; interview).However, the quantitative data revealed that patient or carer preferences were only mentioned in 29% of patient discussions overall. This varied significantly between teams, ranging from 23% of discussions in CMHT 1 to 37.4% of discussions in Mem 2 (Table 8.1); χ² (df=5, n=3213) 22.75, p<.001. To some extent, this reflects differences in the depth of discussion across teams, with Mem 2 discussing only three patients per hour while CMHT 1 discussed 13 (Chapter 6).

Theme IV. Patient Involvement

193

Table 8.1 Proportion of case discussions where patient or carer preferences were mentioned

Team No. of case discussions* % of discussions where patient or carer preferences were mentioned

CMHT 1 437 23.1 CMHT 2 764 25.1 CMHT 3 290 33.1 EIS 1132 31.3 MEM 1 483 31.1 MEM 2 107 37.4 Total 3213 29.0

*A case discussion is defined as a discussion relating to a particular patient at a particular MDT meeting on a given date.

Many staff members believed that patient preferences were not given due consideration, and argued that they should be discussed more routinely and given greater priority:

“We do talk about patient preference sometimes, but it quite often feels like lip service is being paid to it ... It is part of the standard assessment [form] and quite often it is not even filled in.” (Assistant Psychologist, Mem 1; interview)

“Patients’ preferences aren’t systematically sort of brought into decision-making enough.” (Social Worker, CMHT 3; interview)

Two psychiatrists said that mental health services generally lagged behind physical health services in terms of giving patients choices. They cited the fact that, unlike people with physical health problems, those with mental health problems were not given options about which service or hospital they would like to attend: “I think mental health is going to be one of the last services to really apply any decent choice agenda ... and it’s not fair on our patients” (Psychiatrist, CMHT 1; interview) ix_.

ix _{As part of a broader drive for parity of esteem between mental and physical health services,}

the government has recently introduced legislation granting patients the right to choose their mental health care provider and team.291

Theme IV. Patient Involvement

194 Several practitioners argued that patients were the ultimate decision-makers because they were free to decline any treatment offered to them, excluding the minority of patients who were being treated on an involuntary basis. However the reality appeared to be somewhat more complex. As described in the following section, staff sometimes employed informal strategies such as bargaining and leverage to pressure patients to comply with treatment, even when there was no legal compulsion in place.

8.4.1 Complexity in incorporating patients’ perspectives

What patients wanted often differed from what staff perceived to be in their best interests: “It’s the classic debate between needs and wants” (Manager, EIS; interview). Consequently, many MDT discussions concerned the validity of patients’ preferences regarding whether or not they should receive treatment and the kind of treatment they should receive. For example, it was common for patients not to want any involvement with mental health services, particularly in the CMHTs and EIS: “She has absolutely no desire to see services ... zero motivation to work with us” (Nurse, CMHT 2; observation). Sometimes this wish was respected and the patient was simply discharged. Often, however, practitioners believed there were risks to the patient or to others that they should not ignore (see Section 5.4.3 on challenging cases). While it was relatively rare to instigate formal proceedings enforcing treatment (e.g. CTOs and Mental Health Act Assessments), practitioners often discussed more subtle strategies to ensure compliance. They used meetings to share ideas on how to persuade, negotiate with or even threaten patients who did not want to attend appointments or take medication:

“It’s a delicate balance with her ... When she gets stressed she just wants to go [to hospital], so we can’t threaten her with hospital. You can threaten her a bit with her conditions of her stay there and so on.” (Psychiatrist, CMHT 2; observation)

Theme IV. Patient Involvement

195 “We could write to her and say, ‘If you don’t turn up, I’m not sure you’re fit to work as a nurse’.” (StR, EIS; observation)

These quotes demonstrate a grey area between voluntary and involuntary treatment, showing that it can be difficult or impossible for patients to opt out of treatment even when they are not under any legal obligation to comply. The use of informal strategies to manipulate or “push” patients to comply with treatment was often discussed as a way of diverting official involuntary treatment proceedings, which were considered a last resort. However, as a result, patients sometimes felt they were being coerced even where there were no legal orders in place. For example, the following patient (who was not on a CTO) expressed that the only reason he attended his appointments was that he was afraid that he would be “dragged down by the police to the hospital [again]”.

“I’m only coming here for the simple fact that if I ever have any problems in the future ... my worker can say ‘Yeah, he came to all the meetings.’ That’s the only reason I’m coming to be honest. Because other than that I don’t see any benefit in coming here ... I haven’t took the meds for weeks and I’ve been alright ... but I haven’t told [keyworker] that, because I think he might say, ‘Oh you better go back to the hospital then.’ I just don’t trust him anymore to be honest.” (Patient, interview)

Usually, where patient preferences were mentioned, it was in the context of tensions arising from practitioners trying to impose a treatment that the patient didn’t want. Occasionally, however, tensions arose from a patient wanting something that the team was not willing to provide. For example, teams sometimes discussed withholding services that patients desired when they were not convinced it would be a good use of resources:

Social Worker: He wanted a blitz clean because his flat is actually waist-high in beer cans ... I’ve checked with the boss, and the boss says ‘the computer says no’ ...

Theme IV. Patient Involvement

196 StR: Permanent care. He says he can’t cope by himself. I think he

wants to live in supported accommodation Social Worker: And then he’ll change his mind you see ...

Psychologist: He can’t really use the support can he? That’s the thing (CMHT 3; observation)

Navigating patients’ “needs” and “wants” was complicated by the perception that some patients “just don’t have a straight-forward desire to get well and progress” (Psychiatrist, CMHT 1; interview).

Social Worker: She is quite a well-known saboteur ... Whether she’ll accept this ongoing support or not, or whether she’ll try and scupper it again, another work in progress (CMHT 3; observation)

There were several discussions about patients who wanted to maintain their hallucinations because they enjoyed them or found them helpful in their creative endeavours. This raised difficult questions about the ethics of “allowing” patients to remain untreated where they were not causing obvious harm, an issue that sometimes provoked disagreement among practitioners (see Section 7.2 on different models of care).

Staff also faced a dilemma when patients expressed preferences that appeared to be based on prejudiced views, for example, preferences regarding the gender, race or sexuality of their care providers. One patient interviewee expressed that he wasn’t comfortable taking instructions from a woman:

“I’ve had a lot of women in my time and I’ve been very naughty, but, I find that they irritate me. Perhaps it’s because my wife took me back to court too many times ... so therefore ... I wouldn’t like a woman nurse to come in here and start dictating to me. I would feel that a man I could cope with, a woman, I couldn’t.” (Patient, Mem 1; interview)

Team members used meetings to discuss how to balance their desire to respect patients’ preferences with the risk of reinforcing damaging prejudices:

“Sometimes there are the kind of difficult ones like, ‘I don’t want a black worker’ ... ‘I don’t want a man giving me a depot’, ‘I don’t want a Japanese woman giving me a depot’ ... Obviously there are really difficult things around

Theme IV. Patient Involvement

197 sexual orientation, ‘I don’t want him to give it’, that kind of thing. So I think we talk about it in a team and we try and separate, we try and look at what’s underneath it, is it just racism? You know we try and think about that and not just hold a really rigid line, but that’s tricky, obviously.” (Psychologist, CMHT 3; interview)

Given the complexities described above, it was often deemed justifiable to reject patients’ choices or to restrict their freedom through formal or informal strategies.

One psychiatrist emphasised that, even if they were being treated involuntarily, it was possible to offer patients choice about some aspects of their care. He believed this wasn’t given enough consideration:

“If they’re being treated under the Mental Health Act, it can be a struggle for everybody in the service to remember that that doesn’t necessarily mean that they can’t have a choice about anything. One can still offer them a choice of different treatments for instance, or, you know, times of appointment.”(Psychiatrist, CMHT 1; interview)

Some participants noted that part of the reason patient preferences were not always prioritised was that patients were often unforthcoming or unassertive about what their preferences were.