One of the most important findings of the current study was that when participants talked about their experiences of hospital, they did so largely within the context of the people that they had encountered during their admission. Five out of the eight themes related to relationships, these included communication, coercion, safety, trust, and culture and race. One theme, treatment, highlighted the role of admission to hospital. Two further themes are structural, providing an understanding of the environment of hospital and include the themes, environment and freedom.
The role of communication
Communication was highlighted by all participants and constituted the greatest number of coded sections, constituting a third of all coded sections. This illustrates its importance to service users. Communication comprised three specific activities, listening, talking and understanding. In order for communication to take place the participants must be approachable and/or initiate contact.
"As soon as you come they can see that you are angry. Then someone will say, sit down, let's talk about it, make a cup of tea."
Obstacles to communication included unavailability.
"The staff work hard at trying to stay away from the clients was my opinion. Be in their office as much as they could."
Listening was rated highly by service users. The ability to listen was described as a characteristic of being human and service users who had the experience of being listened to described feeling respected. Conversely, one service user rated a whole service negatively because he felt the staff did not listen to him. Listeners who were open, non-judgemental and not patronising were valued.
"...they have their own agenda about what I ought to do and the way I ought to be, rather than let me talk about my problems. I need someone to listen to me and I can't get them to listen to me."
"I took away from that was the feeling, the humanness of everybody, the commitment of everybody and I was just so moved by the willingness of so many people to sit and listen to whatever it is however horrific it might be or however banal it might be they were willing to listen to it all and not patronise me."
The process of talking was by far the most prominent aspect of communication and represented over half of the codes linked to communication. It was identified as important by all participants. Talking was described as therapeutic, but only if the service user was listened to and understood. Service users who were understood valued relevant advice and information.
Interviewer: "What did you like about the staff?"
Service user: "The actual nurses, I think they sort of, understood"
Thirteen people identified numerous instances of a lack of, or poor communication, between service users and staff. In contrast there were no such negative references to communication between service users. One of the key factors in being able to communicate with other users was the shared experience.
"And when I was there I met patients that I could sort of talk about things between us and she'd know what I meant."
There is an overlap between the topics communication and coercion. Positive experiences of communication led to a person feeling supported and cared for, however, coercive communication, such as the use of threats, was experienced entirely negatively.
Coercive experiences were reported by all of the service users interviewed. Objective coercion, such as involuntary commitment and treatment, was often negatively reported, but the coercion of being detained was not attributed to the legal process involved but rather to coercive events that service users were subject to as a consequence of detention. Such events included restriction of freedom and compulsory treatment.
"See the first time I ever went in there I think I was on a section actually and it felt horrible. It felt horrible because I was locked away for so many days and I couldn't go out and be free."
Four men and one woman described being restrained. All were involuntarily detained when the restraint occurred. All counts of restraint were accompanied with forcible medication. Restraint was described as a form of assault and in one case as leading to physical injury.
"I wasn't restrained, I was attacked."
"They wanted to tear me to pieces and I have arthritis of the shoulder to prove it."
Perceived coercion was reported by both compulsorily and voluntarily admitted patients. It followed the form of threats of non-physical force or of consequences resulting from disobeying staff wishes. Perceived coercion was described by service users as being "hypnotised" and "brainwashed" and reactions to perceived coercion were referred to by two people as "playing the game". The most common threat experienced by voluntary patients was of being detained. This was reportedly used to coerce patients into hospital on a voluntary basis, and once admitted into remaining in hospital or receiving unwanted treatment.
"First of all I didn't want to go in and my GP at the time said either you go in or I section you."
"...and my psychiatrist said if you don't take your tablets I will section you and give you ECT under section."
The use of non-physical force also represents a form of perceived coercion.
"I was forced to take medication that was causing me a lot of discomfort."
A final category of coercive experiences includes reports in which a clear abuse of power and trust is taking place with little justification. Three people report such incidences. One incident described a staff decision not to treat a patient in considerable distress.
"There was a nurse who I witnessed saying to him, while you were in this catatonic state and before you got ECT you weren't aware of this but one of the other nurses pulled you off the ground and was taunting you, pulled you off the seat and was taunting you, breaking up your cigarettes in front of you to try and get you to react."
There was a link between the codes for "coercion" and "safety". Descriptions of perceived coercion that were associated with feelings of a lack of safety, rather than actual coercive practices such as restraint.
"Knowing that if I tried to leave I would just get sectioned. So it was a terrifying place, position to be in."
Safety from self, safety from others
All participants talked about safety. An expectation of hospital was that it would be safe, with service users seeking safety both from themselves and from staff or other patients.
"So I felt, you know, being in hospital was one way of keeping me safe."
Safety in hospital was always spoken about with reference to other people. Social contact could instil a sense of safety in some people, but in others contributed to a lack of safety, and its perception depended on the nature of the contact.
"I need people around me so I don't go and stab myself or do anything really stupid."
"The first thing I got when I was up there was threatened by a bloke."
A lack of safety was associated with ward-based violence, and the feeling of fear. Four participants reported acts of violence and aggression perpetrated by themselves towards members of staff and inpatients, while another four describe incidences of being subjected, or witnessing other patients being subjected, to violence by both staff and other patients. Experiences of violence were always accompanied with a feeling of fear. All but three people described feeling fearful while in hospital. Fear was described as a contributing factor to perpetrating violent acts and as a consequence of experiencing violence.
"I was very frightened and that made me verbally aggressive."
"I was safe in hospital until somebody, some other patient tried to strangle me."
A lack of safety and the experience of fear led to aggression and to one person absconding from hospital.
"Um, scary. Couldn't wait to break out and just disappear like. I even found myself escaping the hospital one night and was crossing the M25 believe it or not."
Both men and women described the feeling of being vulnerable on wards where there was a predominance of men.
"It felt positively threatening to be in a mainly male environment with little support and understanding of how vulnerable, in reality, you were in that situation."
Men described being attacked by other men. However, the one woman who describes being attacked the victim of a fellow inpatient on an all female ward.
Fear was associated with a feeling of not being in control. In addition to situations in which there was a risk of violence, fear of staff was reported when they provided unpleasant medication, and treated people coercively.
"I felt frightened of the doctors, they were putting me on drugs that had terrible reactions. I felt frightened."
While a lack of control elicited a feeling of fear, if that situation was contained and controlled by someone else, the fear could be managed and was deemed acceptable.
"It was very scary so you did need that containing place if you are going to be challenged to that extent. It was terrifying."
In addition to service users' experiences of lack of safety and the associated fear, three participants reported observed fear of patients among staff. Once again this fear is attributed to a perceived lack of control by staff and included fears of patients harming themselves and others. Staffs' fear of patients' behaviour resulted in their use of coercive measures.
"And I think a lot of the fear is from a lot of the consultants is that if somebody does kill themselves they are accountable, they haven't done their job to what is written down to their job."
"I think they were scared when I was unpredictable at the time. So I got harsh treatment."
Interviewer: "Do you think that in hospital the staff were frightened of you sometimes?"
Service user: "No I don't think so because they know they can get a man with an injection and just knock me out."
The word trust was used by five service users in their narrative but instances of trust and mistrust of others in hospital were identified by all participants. Trust was described as important in providing a positive experience and mistrust contributed to a negative experience of being an inpatient. Service users' attributions of trust or mistrust were described only in relation to staff.
"Now she leant me money, I paid her back of course, and she trusted me."
"Trust" was linked with the codes "safety" and "coercion." Two service users describe situations in which they felt their safety was at risk. In one account staff were seen as able to contain and deal with the situation and were attributed with a sense of trust. In the other account the staff were seen as allowing the situation to escalate and were mistrusted.
"There was a lot of tension in the air, a lot of fear, most of the patients tried to disappear off to their rooms or out of the way because this guy was really going to blow and everyone knew it. I decided it wouldn't matter where I was on the ward, there was nowhere for me to lock myself in, the nursing staff didn't give a damn so the only option open to me was to run away, which is what I did."
Staff that were trusted by service users were described as being professional, able to manage situations in which the safety of patients was at risk, flexible, non-coercive, committed, and caring about patients. The use of coercion by staff led to a sense of mistrust.
"It wasn't until I agreed to see my consultant that they allowed me out of the hospital at all. That was a sanction to force me to see my consultant that I don't wish to work with. I distrust my psychiatrist that much."
Although trust was not overtly attributed to other patients, it is clear that in many cases there was an atmosphere of trust between patients that was valued.
"This guy, lovely guy who had taken a major overdose had wet the bed and he'd come to me to say that he was so upset about having done this and couldn't approach the nursing staff because of their attitude."
All but one of the participants recognised that the purpose of hospital in part was to provide treatment. However, trust in staff to treat patients appropriately was not always apparent.
"Because of the people in there were more ill than I was. You can see the nurse don't know what to do for them."
Treatment was composed of two subcategories "medication" and "therapies." Medication was a central part of the experience of being an inpatient and seventeen participants spoke about their experiences with receiving medication while in hospital. There was general acceptance of medication in the treatment of mental illness.
"I suppose in the end what made me well was the tablet form, the medication."
However, there was also dissatisfaction expressed about the types of treatment received and the process of receiving treatment. Six participants described potential overmedication leading to feelings of being "doped up."
"I wasn't able to do anything, only take the tablets and be like a zombie all the time."
There was a strong link between the codes for medication and communication. The value of effective communication in discussions about medication is highlighted by two patients.
Service user: "You know they wanted to put me on olanzapine, or the other antipsychotic thing, and I didn't want that. Because I've had it before and it was absolutely awful. It's the worst drug I've ever taken. And I didn't want to go there so I refused all that kind of, any medication or tablets."
Interviewer: "And they respected that?"
Service user: "Yes they respected that. Which was good."
"I assaulted a patient, which got me on a section. ...What did the consultant do but put me on Depixol and it had a horrific effect on me, absolutely horrific. I can't blame everything on the medication, I know it was wrong of me, and they put me on it against my will, my mothers."
Effective communication is also of prime concern in capaCity to consent to treatment, and specifically to receiving ECT. The following participant describes being asked to sign a consent form to receive ECT while actually not having capaCity
"When I'm not well, then I'm out of it, I'm not here. Like when I was in one example, when I was in ******, the psychiatrist got me to sign a form to say I'll have ECT. My brother said to him, you could get her life away at the moment, but he had to have me sign it."
There was a strong link between medication and coercion. All physical restraints reported were followed by forcible injection and several people reported perceived coercion in receiving treatment.
In addition to treatment with medication or ECT four people also highlighted a need for talking therapies while in hospital.
"As I started, I mean there were some very ill people in St ***'s and I wasn't offered any kind of counselling or psychotherapy."
Therapies that were spoken of positively were founded on good relationships with the facilitator. This included a group based on the 12-step model run by a nurse who had been a service user herself. Therapies spoken of disparagingly included art, and music therapy. While the art therapy was not in itself ridiculed, it was deemed worthless as an activity by the following participant due to lack of communication and understanding by staff
"So at art therapy, so I was drawing a picture of the crucifixions. You know like, there's nothing wrong with that it's Easter it's got to be accepted by everyone. And they said to me, why are you drawing that? So I said, its Jesus, remember it's Jesus when he died. You know I didn't go round the trees. He said, but this picture, are you feeling like at death's door, are you feeling like you are crucified or something. I said, no I'm just drawing because of Jesus my hero dying at the cross. But they wouldn't have that, they tried to look into, thinking I was crucified inside. And I got so fed up with them and things."
Six participants raised issues associated with cultural competency in hospital and all of these experiences were negative. Experiences described include a lack of understanding by staff, and racism. A lack of cultural awareness and sensitivity by staff is demonstrated in the narrative of a young Black African woman describing the difficulties she faces as a result of her belief that her mental illness results from possession and the use of voodoo.
"It was like a misunderstanding, they didn't want to believe that the unknown, the unknown, meaning someone who like deals with like magic or things like voodoo, that's what sort of like brought this all about."
Two service users remarked on the difficulties faced in being nursed by non-British staff and this was explained by one interviewee as due to differences in cultural beliefs about the origin of mental illness. Finally, racism towards ethnic minority patients was reported as an experience by ethnic interviewees and witnessed by white interviewees.
"You know you've got to be conscious of being black, you've got to be victimised for being black, and therefore we'll hurt you, intended to feel like this, because it's a kind of racism. ...And that's what I experienced in the psychiatric system."
"There were a lot of black men in the system at the time, again they were treated worse than I was because I was a white woman."
Twelve participants spoke about freedom while in hospital. The focus was primarily on physical freedom, the freedom to be outside, or to leave the unit. Such freedoms were viewed both as a basic human right, and also therapeutic in reducing feelings of confinement and being in touch with the environment. Conversely, a lack of freedom could induce mental distress.
"I enjoyed the fact that we were allowed a certain amount of freedom as in we could say to the staff person in charge, could say, oh I'm popping down the shops for 5 minutes, then they'd just let you out."
"When I was first there I was distraught and what really distraughted me was when I weren't allowed to go outside and get a drink or anything like that."
A lack of physical freedom was not expressed only by service users who were compulsorily detained. The environment, staff decision-making and resources contributed to perceived freedom. Some hospitals had no outside space for patients, while other patients, even those admitted voluntarily, were not allowed out. Finally one patient describes being granted escorted leave but being unable to go outside due to the lack of an available staff escort.
"I wasn't allowed outside. I didn't even have an exercise yard."
"If you're a voluntary patient there you are not allowed out."
"I couldn't go out for a walk because there wasn't a nurse available."
Hospitals with a lack of freedom were likened by five people to prisons, with service users fulfilling the role of prisoners receiving punishment.
"It felt like a prison."
"I felt like I had done something wrong, that I was a criminal."
Freedom was concurrent with the codes coercion and trust. A denial of physical freedom was often perceived as coercive, and the denial of freedoms was attributed to a lack of trust in patients by staff.
Interviewer: "And did you find the freedom helpful? I understand at ********* you were more free to do things, how did you find that?"
Service user: "Yeh, because then they either trust you or they don't."
This category embodies the physical elements of the psychiatric hospitals experienced. The category was a minor one and while it was raised by 10 people, those sections coded were the shortest. With the exception of one report, the environment was only raised as a factor in service users' experience if it was quite poor. Descriptions of the hospital environment included a lack of basic hygiene, old buildings in poor physical condition, overcrowding with a lack of staff, and lack in basic home comforts.
"It isn't nice, it's an absolute disgrace. There are no curtains, in the corridor or the smoking room. The windows are filthy; the furniture's filthy and burnt. It's an absolute dive. It's disgusting and I wouldn't put a pig there let alone a human being."
The effect such surroundings had on patients is clearly expressed by one patient:
"I felt quite low about myself and the surroundings at ****'s are very low and so I felt that I fitted in at first."