Recruitment of service users was difficult and different strategies were attempted. 16 participants were recruited, against a target of 20-25. Information from care coordinators was that 50 service users declined to be involved, mostly stating they did not want to be part of research. It is possible that those interviewed were more positive about CTOs, although they still reported strong views. The data gathered, however, indicates positive experiences can arise from being on a CTO. 12 men and four women were interviewed. Most reported having some kind of psychosis.
Service users, too, considered that CTOs were mainly concerned with compliance. The CTO was viewed as a way of getting out of hospital (‘I left hospital on a CTO, just cos that’s what they do … they put you on a CTO to…make sure you take your meds, it’s sort of like an understanding … if you want to be out of hospital you just take your meds’), but also as ensuring the service user could get back into hospital quickly if necessary.
Service users all had negative views about medication because of the side effects (‘Take me off it …I always think no more medication, please’). However, views were paradoxical and some gradual acceptance and benefit was reported (‘I have got to a place where I am happier about my medication. And how I am doing and my life and everything like that’). The CTO could assist with having to take medication (‘it (the CTO) made it harder to refuse, so I stay well’). Service users reported insight into the need for medication, mostly linked to difficult behaviour (’I used to have outbursts’). There were references to increasing maturity, which enabled service users to manage their illness and taking medication. It is as though service users were describing a journey (‘I don’t know whether it is a case of medication or my maturity through the illness). All described a belief that they would be recalled to hospital if they did not take their medication.
Service users reported knowing their CTO had a condition to take medication, but most did not know the other conditions. They did not report great understanding of, or involvement in, the management of their CTO or care plan; (‘There probably is a care plan, but I probably didn’t even take notice of it, do you know, I’m just not interested’). Doctors were seen as important because of making decisions on medication. Feedback on review tribunals was not generally positive, with service users feeling they were ‘talked about’ and that their opinion was not asked for, nor heard; this was reported more widely also for other meetings/ reviews.
For service users, social activities provided a structure to their time and chance to meet other people. Activities (e.g. meditation, participation in faith groups, volunteering; bingo, fishing, sport) were not always organised as part of the CTO/ associated care plan, but by the service user themselves. Limited engagement in part-time employment/ college courses was reported, but transition to paid employment was difficult because of needing to earn enough to live on. Relationships with family and friends were significant and had been re kindled since being on the CTO: contacts in supported housing/ residential care were important to people who were on their own. Only one person reported they did ‘not find much to do’. There were only limited accounts of being isolated or lonely and those few also described a lot of social activities. It seems that these individuals were reporting being emotionally lonely and would like to have a partner.
Attitudes to the CTO were pragmatic (‘it’s now a matter of course….it’s just a lifestyle’). More positive views about the CTO were expressed than negative (‘I think it has helped me to be quite honest’). Again, views could be paradoxical and it could be hard to separate views about the CTO from an intense dislike of medication. Some service users felt pressured by being threatened with a return to hospital (‘I’m always worried I might be put back in hospital’). For some, the CTO had no effect upon their sense of self and autonomy (‘it didn’t make me feel any different’), but others felt that they did not want people to know about it. These feelings were not easily differentiated from those about having a mental health diagnosis.
A major theme from service users, as from practitioners, was the positive relationship with the Care Coordinator (it’s good I have so much support’) and often the wider mental health team too, (‘any kind of dire situation I can contact the AOT, they would be there for me’). The support from, and good relationship with, the Care Coordinator was reported even by those who felt negatively about medication and the CTO. Service users did not report positive relationships with the Responsible Clinician, perhaps because of their power of recall. While service users sometimes reported feeling not heard in formal settings, they felt the Care Coordinator listened to them. Service users felt there needed to be much fuller, ongoing discussions about medication with doctors and also about the CTOs when it was made.