Background
From family to carer: The role of family members in modern health care
While the person being looked after is usually the expert in their own care, the carer too is a real expert. That being the case, carers should be consulted as partners in care and their unique knowledge and expertise recognised. [6, p 38]
Family carers’ role in coercion in outpatient mental health services
As is clear from this excerpt, carer involvement is central to how CTOs are intended to work.Particular attention should be paid to carers and relatives when they raise a concern that the patient is not complying with the conditions or that the patient’s mental health appears to be deteriorating. The team responsible for the patient needs to give due weight to those concerns and any requests made by the carers or relatives in deciding what action to take. Carers and relatives are typically in much more frequent contact with the patient than professionals, even under well-run care plans. Their concerns may prompt a review of how [the CTO] is working for that patient and whether the criteria for recall to hospital might be met. The managers of responsible hospitals should ensure that local protocols are in place to cover how concerns raised should be addressed and taken forward ([12] paragraph 25.46).
Criteria | CTOs in England and Wales are initiated by a psychiatrist and a social worker. The legal criteria includes that the patient suffers from a mental disorder for which they require treatment to protect their health and safety or that of others, that the treatment (which must be available) can continue in the community, and that the patient is liable to be recalled to hospital. A CTO can only be made when the patient is already detained for hospital treatment. |
Conditions | All CTOs have two mandatory conditions. These require the patient to make themselves available for assessments (i) when an independent medic is assessing the appropriateness of treatment and (ii) when renewal of the CTO is considered. In addition, discretionary conditions may be specified in the CTO form based on the knowledge of an individual patient. The most common are requirements to take medication and stay in contact with services. Having to live on a specified address, comply with monitoring of blood levels and abstain from drugs and alcohol are also used in many CTOs. |
Recall and revocation | Should the patient breach a mandatory condition or deteriorate, he or she may be recalled to hospital for up to 72 h, after which the order can be revoked and the patient remains in hospital for involuntary treatment, they continue on a CTO in the community, or they are discharged from compulsion altogether. |
Renewal | The CTO lasts initially for six months. They can be renewed for a further six months and then for 12-month periods. |
Discharge | The orders can be ended at any time by the responsible psychiatrist. They can also be ended in a judicial hearing. The patient has the right to appeal to managers of the treating hospital and to one hearing by the Mental Health Review Tribunal (MHRN) in each CTO period. Routine hearings are held to ensure that the legal criteria for the CTO are still met even if the patient does not appeal. |
Methods
Sample
Data collection
Analysis
Ethical issues
Results
Carers a
N = 24 (Patients N = 21) | |||
---|---|---|---|
Gender | Male | 7 | |
Female | 17 | ||
Ethnicity | White | 21 | |
Black | 0 | ||
Others | 3 | ||
Geographical location | North West | 3 | |
South West | 4 | ||
South East | 8 | ||
East | 1 | ||
East Midlands | 1 | ||
West Midlands | 2 | ||
London | 3 | ||
Relationship to person cared for | Parent | 22 | |
Spouse | 1 | ||
Sibling | 1 | ||
Patient’s diagnosis and condition | Schizophrenia/schizoaffective disorder | (20) b
| |
Bipolar | (1) | ||
Depot medication | (11) | ||
History of violence | (12) | ||
Patient’s CTO status at interview | Ongoing CTO | (14) | |
Revoked | (2) | ||
Discharged | (3) | ||
Unknown | (2) | ||
Experience of recall | (8) | ||
Duration of CTO | <6 months | (1) | |
6–12 months (renewed once) | (9) | ||
12+ months (renewed twice or more) | (8) | ||
Unknown | (3) |
Experiences of carer involvement through the CTO process
Carer involvement in the making of CTOs
Carol: They said to my husband “if you [object] we’ll go to court and we’ll get the order”, so it was out of our hands
Jorun: Is that a good thing that it’s out of your hands?
Carol: Yes, definitely. Definitely. Definitely. I wouldn’t wish this on anybody.
Carer involvement in monitoring patients on CTO
Lakshman: [The team was] supposed to come at 10 o’clock. They didn’t come. 10.30 - nothing happened. So I rang the people: they’re down the road. I said “nobody has come. I’m going to give the medication because he’s got to go to sleep”
Jeff: And it puts the onus on the team as well because obviously he’s monitored and it takes it off us and puts it onto them which is good. Because the way it was before it was us, and when we highlighted [that he was] ill and action hasn’t been taken quick enough and it’s ended up where he’s become really high.
As a result, Sarah and the health professionals sometimes came to very different conclusions as to her son’s situation:Sarah: They came to the door and they said “Hello [patient name] are you all right?” And he said “yes”. “Okay. Bye, bye” and they went. That was it and what good is that? They may as well not go.
It was explained that due to such insufficient supervision by services, or a lack of assistance beyond ensuring medication was taken, family carers sometimes needed to take on more responsibilities than they thought was fair:Sarah: I went around to his house and as soon as he opened the door I knew he was drunk and I went in and there was an empty whisky bottle on the table, the kitchen was full of smoke […]We were going out for a meal and he is quite menacing when he is drunk and so I said “you are drunk and I am not taking you”. He got really quite nasty with me and he ran after me and grabbed hold of me and I managed to get in the car and I had to quickly lock it and he was actually hanging on to the car as I was driving up the street and so I was really upset. I phoned the team and said “look, I have just been around to [patient] and he is really drunk and he has been very aggressive”. I spoke to one of the nurses who said “well we have just been around 10 minutes ago and he was fine”. I said “he is not fine, he is drunk! His breath reeks!” “Well we don’t get close enough to his breath”.
Niamh: I’d want to have less [involvement] but I’ve got too much now because every time they [make changes] more comes back on me. And because of all this, it’s all come onto me to go instead of [the patient], to talk to [the care worker] about it. Where’s the worker to do that? […] He hasn’t got anybody to chat it over with or have coffee so I have to have him Sunday, I have to go out in the week, I have to take him shopping, I have to do his washing, I have to do his ironing. And I’m disabled. I’m disabled. I said “I don’t want all this. I don’t want all this. He might tell you that I enjoy doing it but I don’t”.
Carer involvement in recall to hospital
Rose: [They] said to [patient’s name] on the Thursday “we’ll come back tomorrow morning with your depot injection”. When they went back on the Friday they got no answer. That’s when the recall was initiated and we later discovered that on the Friday he’d already been to the bank, drawn out every last penny he had and taken himself to London to get a ticket to go to Spain. And I swear that that was, you know, it was not the right way to handle him but as I say at that point in time we didn’t seem to be listened to by his consultant anyway.
Carer involvement in CTO renewal and discharge
Some complained that renewals were made on the basis of inaccurate or erroneous patient records. Jenny said her son’s CTO renewal had been made on the basis of out-dated information. She supported him in appealing and eventually getting the order removed.Sarah: So what [the psychiatrist] said at the last meeting was “I am going to keep you on your CTO.” And I asked why because I said “to be honest with you I don’t want him to go back into hospital [through recalls]. What happened last time was awful and I would really object to that and so I don’t see the point.” [The psychiatrist said:] “No, no it’s better”. And she wasn’t taking him off it. We did phone [national mental health charity] and they said I can write and object but I don’t want to offend [the psychiatrist].
Factors shaping variation in carer involvement
Perceptions of patient preference
Tanya: Before he was sectioned and he was very, very paranoid, he didn’t want me anywhere near anything to do with mental health. But since he’s been on the CTO he’s been more amenable to me being involved. I tell him each time I’m going to do anything so he does know what’s happening. And at the moment - touch wood - he’s ok. As long as I tell him what it is that I’m going to talk to the psychiatrist about or CPN about.
Concern over the relationship to the patient
Jorun: So he wanted to be off it and you were there ‘in court’ saying you wanted him to stay on it?
Tanya: Yes. I did talk to him before about it and yes, he found it very difficult.
Jorun: How did you find it?
Tanya: Difficult. Because you want to do right by what he wants but you have to look at what I thought was best for him in the long term and I still think it was the right thing to do, definitely.
Carers’ knowledge of the CTO and the potential for carer involvement
Jenny: Well, I mean, I think it would have been very helpful if there had been a meeting in February when it was imposed fully to have the opportunity to talk it through to find out how long it was going to be for, what it really meant in terms of [patient’s] responsibility to himself, to the consultant, to the nursing staff. What I should, could, possibly would do in support of all of that.
Jenny: No, well, I mean, it wasn’t clearly spelled out to him. I couldn’t get a clear grip on that “if you don’t do A then B will happen”, what B was. That they would within 24 hours come and chase him? Or that they would call him on the phone and say you missed your injection and would you please come up for it and if he didn’t they would then send him [to hospital]? All of that was very unclear.
Access to and relationships with health professionals
Clare: I’d like to meet the psychiatrist and we haven’t had that opportunity because the Community Treatment Order protects the carers but they don’t have any input in between assessments.
Carer involvement under a CTO was seen to depend on the attitude of, or relationships with, individual health professionals:Ray: Well I will send my messages through the community psychiatric nurse who comes and sees [my wife] every two weeks and he will feed back. I mean it’s very difficult speaking directly to the consultant because the only time I can see him really is when she is in the room.
Lisa: Also I do find it’s very much up to the individual professional, whether it’s the psychiatrist, the social worker or the community nurse. Some of them seem to like you and talk to you and you feel you are working in a partnership. Others don’t. I mean I have had occasions when I’ve been glared at. That glare meant “get out of the room so I can talk to [patient]”, but instead of saying “would you leave us in privacy?” - I mean, I’m in my own house![…]
Jorun: And you also mentioned sometimes it feels like it’s more of a partnership. What kind of examples do you have of that?
Lisa: There used to be a great social worker. He used to ring me up and say did I think [patient name] might be relapsing and I could ring him up and say the same and we’d compare notes as to [patient name]‘s behaviour in the last week or so and say “yeah he’s going again”, something like that. Others just wouldn’t dream of ringing you up at all and once I rang up and was told “oh, we’re always aware of [patient]‘s condition, thank you”. It just depends on the individual.
Issues of patient confidentiality
Rose: I do understand that maybe it’s a case of it’s been suggested to [patient’s name] “do you want your mum to come along to the appointment” and he’s probably said “no”[…]We’ve had problems over the years and I do understand, yes I do understand the very basic need for confidentiality but I think it’s taken to far too much of an extreme. I think there are certain things that don’t necessarily need to be kept confidential.
Jorun: Such as?
Rose: Such as if you’re dealing with carers that have a large input into the treatment they have every right to know what medication is being taken, when it’s being taken, what sort of other treatment is involved.
Opportunities for private discussions
Participants believed services could be more imaginative in addressing such dilemmas. Some emphasised they had been “lucky” to find creative ways to deal with this and that the structure of the CTO helped:Sarah: I am going to try and talk to [the psychiatrist] without [patient name] there where I can talk more honestly. Because when he is there I can’t tell her the negative things because then he feels really criticised […]. He doesn’t want to [see the psychiatrist] more often than six months and so if I said “no I think you need to see him sooner and monitor his medication”, [patient name] would have been really angry with me and wouldn’t let me go with him to the next appointment and so now I am in a kind of a trap.
Naomi: I think [the CTO] does make it easier because I can go and see the psychologist or his care coordinator, and I can say “I don’t want you to tell [patient’s name] but I do think things are slipping”. And that gives me a breather from ringing and saying we need the Mental Health Act. And it means three people don’t pile in, upsetting [patient]. It means that the psychologist may phone him or drop a note through the door. Yes it does make it easier. But it’s also made easier by the psychologist agreeing not to say “hello [patient], your mother rang me, I hear you’re not too well”. And I’m very lucky there.