Getting help in a crisis
Many people had only received help when their psychosis had reached crisis point - i.e. they felt unable to cope or control things. This could...
Most people we spoke to had experienced at least one hospital stay, lasting between one night to a year. Some were brought to hospital at the time of their first experience while others were admitted later. For some, the psychosis was closely associated with low mood and depression, and they had been in hospital regularly, for example because they were self-harming or had taken an overdose. Ruby said she had been admitted to hospital 250 times in 3 years and that she was sometimes ‘in and out’ several times in a week. But not everyone we spoke to had been admitted to hospital, even when they were very unwell. Some people visited hospital as a day patient, which as Nikki (below) described, had benefits.
People could be referred to hospital admission from their EIP team or crisis team but some went directly to A&E and stayed overnight for assessment or treatment. Going to A&E in a crisis didn’t always lead to a hospital admission, and people could find they were not admitted despite feeling desperately in need of help. Some people who went to A&E experiencing paranoia and delusions, didn’t feel comfortable being in hospital and left before they were admitted or had received any treatment. Green Lettuce was waiting to be given a hospital bed when he was struggling with paranoia and voices. He sat in a corridor for hours waiting to see a doctor and because of his paranoia he thought everyone was against him, so he went home.
People were usually very unwell when they were admitted to hospital and some couldn’t remember much about their time there – Hannah said her memories were ‘a bit smoke and mirrors’. Sometimes medication could prevent them from thinking, or remembering about it afterwards. Most people had been treated in NHS hospitals, but Nikki had experience of a private mental health ward.
People could be transferred once or twice between hospitals during their hospital stay without being told why they were being moved. People could be put on an open ward in hospital, or be given their own rooms. However, having your own space didn’t necessarily mean privacy or comfort. Nikki had someone ‘watching’ her while she was sleeping in a private hospital and wasn’t allowed to keep any personal items in her room, including underwear. This was the opposite of her experience in NHS hospitals.
Making friends with other inpatients could be important and therapeutic. Hannah took most comfort from talking to other people who were inpatients, hearing about their problems and knowing that there were other people who were suffering as well. People could become very attached to friends they made and rely on their support, or want to be there to help them. Hannah found it distressing when she wasn’t allowed into the room of a friend she’d made, who she could hear was having a breakdown. Barry made a friend in hospital who was very patient with him and used to sit on the bean bags in the corner and chat away to him for ages. When she left hospital his delusions increased.
For some people, being in hospital when they were extremely unwell was a frightening time. Becky remembered it as ‘the worst time of my life, not being able to ever picture a way out’. Experiencing psychosis meant people could act out of character and some described being restrained, injected with a tranquiliser, or put in an empty room on their own. Luke said in the first few days ‘you’re a horrible human being’, violent, prejudiced, ‘trapped’ ‘psychotic’. When he was first admitted to hospital Joseph had an ‘insane amount of energy’ and was cartwheeling down the corridor and going into ‘Jackie Chan sort of karate mode’. He remembers kicking a light and breaking it and five ‘huge stacked guys’ holding him down. He thinks he must have resisted but he now accepts ‘it was necessary for them to do that’.
While in hospital people were usually prescribed medication to reduce or control their symptoms and to help them sleep. Medication, and rest, could make people feel better quite quickly, or it could take a while to start to work, and sometimes didn’t help at all. Sameeha remembers the moment she began to feel better two weeks into her hospital stay. But Barry was in hospital for a year and had periods of just sitting and staring at a wall and not eating. He slowly got better with the support worker’s help.
Some people were also given access to other therapies such as CBT (Cognitive Behavioural Therapy), dance therapy, art therapy, life skills and mindfulness. Not everyone found therapeutic activities helpful at the time. Nikki said ‘a lot of the time I was just bored’. Others didn’t feel well enough to benefit from therapies: Becky said ‘when you’re having the worst day of your life and you don’t wanna live anymore and they suggest going for a walk or something and you think, why on earth are you saying that to me?’
Interactions with health professionals and administrative and clerical staff in hospital were often an important part of people’s experience of being treated in hospital. Most people described a mix of good and bad experiences with staff. Joseph had some very positive experiences and said the staff could be ‘amazing’ and would stop to chat with him whenever he needed to talk. Green Lettuce felt that there were some staff who clearly ‘just cared’.
However, people we spoke to also described poor communication and long waits to hear from doctors making decisions. A few felt that medical staff did not take them seriously or understand how unwell they felt. Andrew X said once when he was being admitted, the ward manager ‘had a go’ at him because he’d had to get out of bed to do an assessment. Joseph never heard voices as part of his psychotic experience, but while he was in hospital he had a different medical professional each week come to him and say: ‘So Joseph, are you hearing thoughts today?’ which he found frustrating. Hannah felt that the staff in hospital ‘just didn’t seem to care very much’.
Some people felt staff were ‘disrespectful’: Ruby overheard a staff member referring to her as a ‘frequent flyer’ and when a new nurse introduced herself as Ruby’s nurse for the day, the cleaner commented sarcastically ‘lucky you’.
Some people were so unwell they were kept in hospital involuntarily under a section of the Mental Health Act 1983 (known as being ‘sectioned’). People can be detained under a section of the Mental Health Act to allow medical staff to examine, assess and treat them. Even if people go to hospital voluntarily, they can be detained there for further treatment without their consent. Medical professionals must consult with a range of people, including a person’s nearest relative, before sectioning a person. The Mental Health Act sets out when it is legal to detain and treat someone, who is authorised to do it, and what procedures should be followed. People are sectioned for a certain length of time, and can have the section removed: be ‘de-sectioned’. An assessment about whether to section someone is made based on their condition at that time.
Some people felt that the possibility of being sectioned was used as a threat when they were very unwell. Andrew X (below) said ‘a lot of the time you’re given these choices, ‘do what we say or we’ll section you”. When Nikki was admitted to a private hospital, although she was in hospital voluntarily she was told that if she asked to leave she would be detained.
Fran who was sectioned said ‘it’s not like a prison but it’s the same ethos, you cannot get out’ and Luke described it as ‘a huge power that a psychiatrist has’. Sameeha said she wasn’t told anything: ‘I was literally just thrown in, sectioned and they just said, you need to wear this’. Becky hated being sectioned but realised afterwards that they ‘only wanted the best’ for her.
Being ‘sectioned’ could involve a long process of assessment. Luke said the first time he was in hospital he was sectioned and the process took time and involved ‘a lot more red tape’ but the second time it was ‘wham bang, thank you ma’am’ and he was in a ward bed within eight hours of the police coming to get him at home. You can read elsewhere about what it was like having an initial assessment while in crisis.
But some were able to avoid staying in hospital under section. Dominic had never stayed overnight in hospital and his family opted to look after him instead. He stayed at home under what he described as ‘house arrest’. The agreement was that he would be sectioned if he left the house. Fran’s mother suggested that Fran live with her instead of being sectioned and Andrew X had a ‘commissioning arrangement’ that meant he could be treated while living at home.
You can read more about being in hospital under a section of the Mental Health Act in other related modules: Experience of Psychosis, Mental Health: Ethnic Minority Experiences, Experiences of antidepressants.
Discharge from hospital is usually planned by a multidisciplinary team, and people sometimes have to wait for medication to be ordered. Some people remember being told they were going home but then having to wait for days before they were discharged, without being told why.
After leaving hospital, people usually receive a follow-up visit within 3 to 7 days from a community team. Not everyone wanted continued support: Sameeha, for example, felt fully recovered when she left hospital after a single psychotic experience and didn’t want any further support.
But for many, leaving hospital was a difficult and stressful period, and for those who had been in hospital for a long time, being home brought new challenges. As well as coming to terms with what had happened, people had to deal with the emotional impact of their psychosis on their loved ones, the disruption to their plans for study and a career, and the loss of long standing friendships. When Fran came out she said ‘all my friends were either going to university or getting jobs or x, y, z. And I was just unemployed and really, really miserable and didn’t know what to do with my life’. Some faced periods of low mood and depression, further psychotic experiences, and homelessness.
Despite what could be a difficult period, some talked about how the self-help techniques they had been shown in hospital and the friends they had made helped them to move forward with their lives.
Many people had only received help when their psychosis had reached crisis point - i.e. they felt unable to cope or control things. This could...
Most people had been prescribed a number of different medications over the time they had been having psychotic experiences. These included: Anti-psychotics (e.g. olanzapine, risperidone,...