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National Collaborating Centre for Mental Health (UK). Service User Experience in Adult Mental Health: Improving the Experience of Care for People Using Adult NHS Mental Health Services. Leicester (UK): British Psychological Society (UK); 2012. (NICE Clinical Guidelines, No. 136.)
This chapter provides evidence about the key problems relating to detention under a section of the Mental Health Act (HMSO, 2007), including assessment, referral and treatment) (see Section 11.2), and the key requirements for high-quality service user experience (see Section 11.3). Further information about the source of evidence for the review of key problems can be found in Chapter 4. Recommendations for best practice and recommendations for research can be found at the end of the chapter.
The Mental Health Act 1959 (HMSO, 1959) introduced the possibility of patients being treated informally. Prior to this, all patients in hospital were on an ‘order’. The Mental Health Act 1983 (HMSO, 1983) reinforced the status of the informal patient, but also gave some rights to those detained, most notably the right to appeal and to have written information on these rights. The 2007 amendments to the 1983 Act (HMSO, 2007) introduced, for the first time, the possibility of compulsory treatment outside hospital (so-called community treatment orders). In the first 18 months after their introduction, just over 2,000 people were subject to these orders, far in excess of what had been predicted (The Health and Social Care Information Centre, 2009).
Although both hospital beds and admissions have reduced (see Chapter 9), the trend for involuntary admissions has increased since 1983, both in actual numbers and as a proportion of all admissions. Keown and colleagues (2008) studied the period 1996 to 2006 and found that involuntary admissions increased by 20% from 42,844 to 51,361. The number of ‘place of safety’ detentions in the same period increased by 189%. Given the pressure on beds identified in Chapter 9, this means that many wards have a majority of service users who are detained.
The Mental Health Acts (HMSO, 1959, 1983, 2007) are about compulsory detention and compulsory treatment, and the main treatment is medication. For service users the most controversial form of compulsory treatment is control and restraint and forced medication. In practice, there are three situations in which this might be used. The first is during admission if the person is being taken from home and the police and a psychiatrist are involved. Secondly, if a service user refuses oral medication, injectable versions may be given by force; this may contain an element of surprise and shock for the service user if there is a time lag between the refusal and the injection as they may have forgotten refusing the oral medication or not expected it to have this consequence. Finally, control and restraint and rapid tranquillisation may be used if an incident of violence, or more rarely self-harm, is anticipated, as recommended by NICE in the case of imminent violence (NICE, 2005).
There is evidence that staff and service users have different views of what leads to compulsory treatment episodes. Duxbury (2002) found that staff attributed violent incidents to characteristics of the service user – their illness or demographic features such as being a young male. Service users, on the other hand, saw compulsory medication as a heavy-handed response to understandable pressures such as being confined to a hospital ward where they did not want to be. Furthermore, service users may find treatment, especially some forms of medication, more harmful than helpful for them, and this adds to their negative feelings about being detained.
No area of mental health services is more controversial or challenging than detention and compulsion. It is a serious matter to deprive someone of their liberty and to use physical force, even if both of these are justified by appeals to the service user’s ‘best interest’ and backed by law. It is not possible to use control and restraint and rapid tranquillisation with ‘dignity and respect’. Nor is it possible to know which of the forcibly prescribed drugs will suit service users and which they will do anything to avoid, including, but not limited to, escaping or absconding. This is hardly surprising when side effects such as akathisia have been linked with suicide (Van Putten & Marder, 1987). This can also be the case with newer drugs. No other group of service users in medicine are subject to this and so safeguards for them are of paramount importance.
An important finding from both the qualitative and survey evidence was that people often did not know whether they were being voluntarily or compulsorily assessed, referred, admitted and treated under a section of the Mental Health Act (HMSO, 2007). Therefore, it is difficult to classify some themes from the qualitative evidence as being appropriate to this chapter or previous chapters. The evidence from qualitative reviews, qualitative analyses and surveys that could be classified here addressed the following domains of person-centred care:
involvement in decisions and respect for preferences clear, comprehensible information and support for self-care effective treatment delivered by trusted professionals emotional support, empathy and respect attention to physical and environmental needs.No evidence was identified that directly addressed:
fast access to reliable health advice involvement of, and support for, family and carers continuity of care and smooth transitions.For the purposes of the review, themes from the qualitative evidence are summarised only briefly here, with further details provided in Appendix 12 and 13. Domains and sources of evidence without themes are not listed below.
In the qualitative analysis conducted for this guidance, service users not only spoke about medication and forcible detention but also about the smaller freedoms they were or were not permitted in hospital:
It took me two or three years of being the good girl and obeying everything to my suddenly saying bollocks, I’m not doing this any more. I’ll do what I want to do, and you’re not going make me do anything I don’t want to do. Which made life a lot easier. And there’s these petty rules, like you must draw your curtains all the way back in the daytime. Why? Exactly? (Healthtalkonline, 2011)
The People First Survey conducted by Mind (Rogers et al., 1993) (see Chapter 4 for further information) showed that 52% of respondents received unwanted treatment (principally drugs, followed by ECT).
In the qualitative analysis conducted for this guidance, many service users were unaware that they had been detained, or only told they were detained if they tried to leave an inpatient ward:
Yeah. It was awful. Because I was like, who are they? How do they have the right to do this? They’ve got no right to do this. It must be the most awful thing. Like I hadn’t heard much about that kind of thing happening before, but, so that’s why it was very frightening. Because I was like, what the hell? (Healthtalkonline, 2011)
Some people felt they had not been given enough information about the side effects of medication or did not have any control over which drug they were given:
. . . the last time I was in hospital, they were trying me on different medications then and you had very little choice then, because you know, you’re under section and you can’t really refuse medication. So I was getting a lot of, quite a few side effects from the medication I had in hospital. Like tremors were again quite, tremors and also I was biting on my teeth a lot, to the point where I cracked my own teeth, because I was biting that hard down. I couldn’t control when that happened. (Healthtalkonline, 2011)
The Inpatient Service User Survey (Care Quality Commission, 2009) (see Chapter 4 for further information) had one question relevant to the domain of ‘clear, comprehensible information and support for self-care’ (see Appendix 11 for the full results). The results indicated that the majority (60%) of service users felt they did not have their rights completely explained to them in a way they could understand when they were detained under the Mental Health Act. The benchmark data indicated that there was some variation in performance between trusts, and all trusts had much room for improvement.
The People First Survey conducted by Mind (Rogers et al., 1993) 20 years ago (see Chapter 4 for further information about the survey) showed that most (63%) service users considered that the reason for admission had not been adequately explained to them. Furthermore, 68% were not satisfied with the explanation they were given about their condition. When in hospital, 80% of service users considered they had not received enough information about their treatment generally, and 70% thought they had not received enough information on the side effects of treatment. Of those receiving antipsychotic drugs, 60% were not informed of their purpose. Of this group, 70% were unhappy about the amount of information they had received about their medication. With regard to ECT, only 14% were given information about the purpose of the treatment, and just 9% recall being told of any potential side effects.
In the qualitative analysis conducted for this guidance, the experience of being detained was for many people highly traumatic. People were unsure, on being admitted to hospital, what their rights were and what was happening. Having to have injections of antipsychotics was specifically mentioned by two service users as being an unpleasant experience:
And I know in particular the injections, you tend to lose your dignity to, I mean you do to an extent in a psychiatric ward anyway, although it’s not going to be as bad as prison. But yes, the injections, sometimes you know, you do tend to feel that you’re not in control at all. (Healthtalkonline, 2011)
And I was sort of wandering up to the ward with sort of blood dripping down and this nurse came up and she was wonderful. And she just said, ‘Oh [name], where have you been?’And I said, ‘Look what I’ve done.’And she said, ‘Oh silly person. Come to me.’ And then I got to the nursing station. I didn’t want to be touched. I refused to let them touch me, and the doctor was really angry with me. I don’t know why he was so angry. But he was. And he took me away to be stitched up and he made a point of saying he wasn’t giving me an anaesthetic when he was going to stitch me up. Which may be you don’t need it if you’re on high dose Largactil. I was on a 1000 mgs of Largactil by then, which is a very high dose, so I didn’t feel much anyway, but it felt quite humiliating when he said it. (Healthtalkonline, 2011)
In the qualitative analysis conducted for this guidance, for some people antipsychotic medication did not reduce their symptoms and had serious psychological and physical side effects:
. . . it’s a very kind of difficult subject area. Because I can see how it helps so many people, medication. But I also can see it, it might not be the thing for other people, and it might be doing them more damage actually. That’s what I said to, when I first was in hospital, I said, ‘Why are you giving me medication, you know, I need help with my diet. I need. . .taking medication doesn’t stop me being abused and getting distressed from the abuse. It’s just putting the distress on pause. It doesn’t tackle anything really.’ (Healthtalkonline, 2011)
One service user talked about their experiences of being detained and having to take antipsychotic medication:
Oh it was awful. It set me back. It was like, frightening. I thought they had no right to do that. I, I think that it’s a very brutal approach. I know why they do it. Because they know that if you go on the medicine for a month, you’ll be better. And then after that you progressively get better, the more you take the medicine.
[. . .]
And, it was a never ending cycle of in and out of hospital and they always tried to blame me, they said that, you know, I was non-compliant but the drugs didn’t work and I didn’t see how the drugs not working made me non-compliant I think it made the drugs not work. (Healthtalkonline, 2011)
Another service user spoke about the side effects of antipsychotic drugs:
I was very tired all the time, very drowsy, very zonked out, you know, very medicated sedated. And also strangely enough, my throat constricted. The muscles in my throat constricted so it made it very difficult to speak.
[. . .]
Things did get better [after changing his medication] but that problem with my speech which, you know, which I had no help from the psychiatrist [who] refused to believe it was a recognisable [side effect]. (Healthtalkonline, 2011)
However for other people antipsychotic medication had a dramatic impact on improving their quality of life.
The People First Survey conducted by Mind (Rogers et al., 1993) (see Chapter 4 for further information about the survey) showed that 80% of those who had taken antipsychotic drugs reported side effects, the majority of these (62%) being rated as ‘severe’. Around 86% of this group also indicated that they would have liked to have been offered an antipsychotic self-help group. Only 23% of those who had stopped taking their medication reported having any help from staff with the withdrawal.
In the qualitative analysis conducted for this guidance, many people found the hospital environment frightening at worst and boring at best. Physical health often suffered in this environment:
And they tried me on different drugs every week, Risperidone, what else? Haloperidol, Olanzapine. I went through the book, and I was putting on more and more weight, because of hospital food and they wouldn’t take me out to do any exercise, because it was winter and they didn’t want to go out. And you’re not allowed out on your own if you’re under Section, particularly not if you’re blind. And then they put me on Clozapine, but they didn’t warn me, what could happen. And I went up to about seventeen stone. Not because I was a piglet, just because I was on Clozapine and eating hospital food, and not getting any exercise. (Healthtalkonline, 2011)
A few people described the hospital environment as disorientating and distressing:
I think it’s a well-established fact that you have less rights in hospital than the prisoners do in prison. So you have, there’s a loss of freedom. You know, isolation or disorientation, all those things really and [er] it’s quite hard to, it’s quite hard to live with. I think you have to be a very strong type to have those many admissions and then come back, and you know, do the things I’ve managed to do with my life really. (Healthtalkonline, 2011)
In the qualitative analysis conducted for this guidance, the shock that people felt when they discovered they could be detained and treated against their will was something that people often spoke about in great depth:
I woke up in the middle of the night, and I think, I thought to myself, no they’ve made a mistake. So when I went to the office where the night nurse were. She was there and like that sleeping and I saw her, and I said, ‘Excuse me love. Excuse . . . I think you’ve made a mistake. Have you got my clothes? I need to go. I think you’ve made a wrong mistake.’And I remember she buzzed. She pressed a buzzer underneath the desk. I saw four big blokes run down the corridor. They got hold of me and held me down on the floor, and injected me with tranquillizer and it knocked me out for four days. (Healthtalkonline, 2011)
After experiencing being detained, people often felt they would do anything they could to avoid it happening again.
The evidence for the key problems associated with detention under the Mental Health Act, categorised according to the dimensions of person-centred care, is summarised below.
The survey results showed that many service users are not asked for their consent before treatment. The qualitative evidence suggested that compulsory treatment and control impacted on the experience of care. In addition, service users reported being exposed to sometimes petty controls and patronising staff.
No qualitative evidence was related to this domain, but the survey results suggested that many service users did not have their rights completely explained in a satisfactory way when detained under the Mental Health Act, and did not receive sufficient information about treatment. Service users reported not being given information about side effects, especially from antipsychotics, which can be severe. This appears not to have changed in the last 20 years.
The experience of control and restraint, and compulsory treatment, is experienced as traumatic with a loss of dignity and respect. Service users report sometimes being blamed for treatment failures. Overall, the impression is that service users subject to the Mental Health Act do not feel any significant empathy, emotional support or respect from staff.
The survey results suggested that many service users experienced troubling side effects from medication and did not get the support they needed from staff or self-help groups. In some cases, service users felt that staff did not believe them when they reported side effects, including descriptions of what were probably dystonic reactions to antipsychotics.
Service users detained under the Mental Health Act reported that they found inpatient units to be frightening places and said that they often felt disoriented. They are also reported that the hospital environment was often quite ‘boring’, with little for service users to do to occupy their time.
The GDG developed a set of qualitative statements based on their expert opinion that set out what they thought would be needed to improve service user experience. For assessment, referral and treatment under the Mental Health Act (HMSO, 2007), the key requirements for high-quality service user experience for each dimension of person-centred care are shown in Table 16. The key requirements for control and restraint, and compulsory treatment, are shown in Table 17.
Key requirements for high-quality service user experience (assessment, referral and treatment under the Mental Health Act).
Key requirements for high-quality service user experience (control and restraint, and compulsory treatment).
The review of qualitative evidence and surveys suggested that some people did not have their rights properly explained to them, and some did not realise they were, in fact, detained under the Mental Health Act (HMSO, 2007). Consent to treatment is largely ignored when a person is detained under the Mental Health Act, and there are reports of service users finding healthcare professionals patronising and petty in their approach. Moreover, information is sorely lacking, both about their status and about side effects of medication and other treatments. There are some reports of service users experiencing acute dystonic reactions, which were trivialised and ignored by staff. It is important to note that experience of unexpected side effects being ignored appears in the People First Survey conducted by Mind (Rogers et al., 1993) 20 years ago, as well as in more recent qualitative evidence, suggesting that this continues to be a problem. Overall, the experience of being detained is, at least for some, traumatic, with a loss of dignity and respect and a feeling of not being cared for. It also emerges that staff take little account of how disoriented the detained person is, and how disorienting the environment of many wards can be. For some service users, they are simply being detained and are offered little support of therapeutic value.
The GDG concurred with these descriptions from the literature, and furthermore highlighted the plight of families and carers who often receive little information from medical or nursing staff when their family member or friend is detained. In addition the GDG raised concerns about the safety of the individual and their property while detained, which was also voiced in the qualitative reviews.
In identifying the key elements for high-quality care, the GDG highlighted the need to maintain the service user’s dignity and respect and accommodate their preferences and choice wherever possible, despite being subject to the Mental Health Act (HMSO, 2007), or to restore these rights quickly following any form of compulsory treatment. Within the context of the Mental Health Act, GDG members were of the view that there should be a much greater emphasis on, and awareness of, the Mental Capacity Act (HMSO, 2005). Greater account should be taken of the disorienting effects of crisis and mental illness and the need for professionals to repeat explanations and uphold the person’s rights, backed up by clear written and verbal information. Service users and their families and carers need access to experts, such as consultants, and be assured that their possessions will be safe while they are detained. If control and restraint, and compulsory treatment, are used, then this should be explained wherever possible and revisited, including before discharge. The use of control and restraint is often traumatic and seen by the service user as an infringement of their rights, therefore staff need to pay due regard to ensuring that the service user feels safe and, indeed, is safe; when control and restraint, or compulsory treatment, are used, staff need to restore a sense of safety as soon as is practicable and possible.
When formulating the recommendations, taking into account both the key evidence about current experience and their aspirations for excellence, the GDG added a number of practical recommendations such as aiming to avoid the use of the Mental Health Act through the use of effective, non-custodial alternatives to admission, such as crisis houses, home treatment and respite care. Also, when a person is admitted to a place of safety, the GDG considered that 4 hours should be the maximum time a person should wait for a Mental Health Act assessment to take place. When a person has been detained, transfer to an inpatient facility should be done in a careful, supportive and safe way, and without resorting to the use of the police if possible. The GDG placed significant emphasis on the service user’s rights and the provision of good information and incorporating families and carers into the process where agreed by the service user.
On reviewing the aspirations and the key problems the GDG focused attention on some broad issues that applied across all points on the care pathway, but were of particular importance to detention under the Mental Health Act (HMSO, 2007). Health and social care professionals should ensure that they can understand and apply the principles of the Mental Capacity Act (HMSO, 2005). If the service user has impaired capacity, professionals should make sure that their care records are checked for advance decisions and advance statements before treatment is offered.
When using control and restraint, and compulsory treatment (including rapid tranquillisation), healthcare professionals should understand what this is like for the service user, include families and carers in decisions where it is possible to do so, and regularly explain what is happening to both the service user and their family and carers. The evidence concerning the use of antipsychotic medication by injection, whether compulsory or not, was discussed by the GDG, which endorsed the finding that this can be humiliating for the service user. When administered as a means of rapid tranquillisation then it is difficult to see how ‘empathy and respect’ for the service user can be sustained. It was clear from the evidence that some service users accept medication that they feel is harmful to them in order to avoid it being given by force. Finally, the GDG reiterated the need to give service users the opportunity to record their views of compulsory treatment in their care record.
Recommendations or parts of recommendations that underpin the development of the quality statements (see Chapter 13) are denoted ‘[QS]’.
Detain service users under the Mental Health Act (1983; amended 1995 and 2007) only after all alternatives have been fully considered in conjunction with the service user if possible, and with the family or carer if the service user agrees. Alternatives may include:
