Psychosis (young people)

Receiving a diagnosis and finding out more

Psychosis describes a set of “symptoms” that can lead on to different diagnoses. A diagnosis is given when a doctor identifies particular “symptoms” that meet the description of a recognised illness. Recognised illnesses are listed in the International Classification of Diseases or ICD (a comprehensive list used globally to define types of illness). A few of the people who spoke to us had received mental health diagnoses including:
  • Schizophrenia 
  • Paranoid schizophrenia
  • Bipolar Affective Disorder (bipolar)
 
Many we spoke to were not given any of these diagnoses but were told that they had experienced psychotic symptoms. 
 
A few experienced psychosis in the context of other diagnoses such as depression, post- traumatic stress disorder, Asperger’s Syndrome, ADHD or Borderline Personality Disorder (BPD) (See Psychosis and other physical and mental health experiences].
Treatment before diagnosis
 
In the early stages of their first experience of psychosis some people received treatment in hospital but others were provided with help at school or college, through CAMHS, or from their GP. Initial assessments can take some time (e.g. Sam’s took 6 months) and during this time people didn’t always receive a clear medical explanation for their experiences. The practice seemed to vary for each person from being given no information, to being offered a variety of different medical explanations. When Sameeha was taken to hospital under the Mental Health Act (“sectioned”) she says: “no-one told me that I was going through psychosis. I literally was just thrown in, sectioned and they didn't say anything”. It was when she was discharged from hospital and felt recovered that she was given more information. Joe was seen by lots of people initially and received “nine different answers from seven different people in two weeks” about his psychotic experience.
Early medical assessment
 
Depending on where people went to get help after their first experience medical assessments tended to be carried out by a psychiatrist at Child and Adolescent Mental Health Services (CAMHS), Community Mental Health Teams (CMHT), Early Intervention Service (EIS), or in hospital (including A&E). Assessments can be carried out by any experienced mental health practitioner which can typically include Community Psychiatric Nurses, Social Workers, Psychologists, Occupational Therapists and Psychiatrists.
 
Many mental health professionals, including EIS teams, do not use diagnostic labels, preferring to use the term ‘psychosis’ to describe the illness. This is because giving a diagnosis of schizophrenia, in particular, is considered to be misleading, as it is associated in many people’s minds with life long illness, whereas the reality is that most people will get better. This can, however, create confusion when, for example, the professional making the assessment is required to enter a “diagnostic code” on the person’s notes. Some people felt that their medical team had made a diagnosis early on but weren’t telling them.
CAMHS see many young people who experience hallucinations at a time in their lives when they are undergoing high levels of emotional distress and some people, like Andrew X felt that “in CAMHS they don’t like to diagnose”. Early Intervention Services (EIS) also tend not to diagnose early on as it can take time before it is clear whether a person’s experiences will develop into a diagnosable (ICD) condition. 
 
Many people felt that being told that they had had a psychotic experience was something that needed to be handled with care because they didn’t realise that what they were experiencing wasn’t “real” or that others didn’t have those experiences. Nikki saw a school counsellor and drew a picture of herself with speech bubbles around it to represent her voices. When the counsellor said she was “hearing voices” it was the first time she realised other people didn’t hear them. Many had little understanding of what “psychosis” was and hearing the word used to describe their experience could raise a lot of questions about what that might mean for their future.
Receiving further diagnosis
 
How quickly people received a diagnosis depended partly on when they sought help. Dominic, had had psychotic experiences for years before he sought help or received a diagnosis. Where the experience was short or a one-off some people preferred not having a diagnosis or a label put on it. But others who had ongoing psychotic experiences would have preferred to know as soon as possible that there was a medical explanation for what they were experiencing.
Once people had a diagnosis, some “felt better” for knowing. Becky thought the diagnosis helped her parents to better understand what was happening to her. Andrew Z had always been interested in psychology and being diagnosed with psychosis fuelled his interest in working in mental health. Although he hadn’t been to see anyone about the “running commentary” in his head, Peter felt that having a “name” to put to his experiences and knowing they were a “genuine issue” would help him feel more optimistic about the future.
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Being diagnosed with a mental health condition could also feel quite daunting. Being told you have schizophrenia or bipolar disorder, for example, could feel “heavy” and have real consequences.
It can be difficult for health professionals to provide a single diagnosis. Psychiatrists couldn’t pinpoint a specific diagnosis for Tariq, but said that he was experiencing symptoms of manic depression and schizophrenia. For some people receiving a diagnosis felt arbitrary: Andrew X describes professionals looking at him and deciding “we’ll whack him with this”. A few people said the diagnosis they had received didn’t seem right.
Finding out more
 
A few people self-diagnosed before, after, or in the absence of a medical assessment. Some used the internet to find out more, or had heard about psychosis from other people.
For some, being given the diagnosis prompted them to use online searches, blogs and other sites to find out more about what they were experiencing, including:
  • Google search engine
  • Mind website
  • “Reddit” self- help pages
  • Facebook closed groups and forums
Green Lettuce searched online for causes and treatments of psychosis and found a lot that seemed relevant to what he had experienced, which he found helpful because “I knew that it was something that can happen to other people and it wasn’t just me just going mad”. But finding relevant or helpful information could also be problematic. Tariq found what he felt was inaccurate and flawed information online, and sometimes studies he read about didn’t match his own experience.
 
Technology could also help in other ways. For example, some people struggled to remember what they had done while they were experiencing psychosis, and it could be useful to go back through messages on their phones to see the sorts of things they had been saying to friends during their psychotic experience.
You can read more about using online support here.

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