Psychosis (young people)

Advice to others from people with experience of psychosis

The people we interviewed had general, and some more specific, messages to society, to medical professionals and to friends and family members about psychosis. Many felt that there was a need for more compassion and understanding for people who experience psychosis and that each person with experiences of psychosis should be treated as an individual rather than others making presumptions about them. 
 
General message about stigma and mental health
 
People we spoke to felt it was important to speak out about psychosis and felt there was a need for better and balanced information in schools and in the media. Sam has been made to leave college because of a lack of understanding about her psychotic experiences. She hears voices that sometimes tell her to hurt others but has never acted on them and she knows she “wouldn’t hurt a fly”. She says there’s a presumption that everyone who hears voices is a “psychopathic killer”.
Advice to other young people who experience psychosis
 
People we spoke to had lots of advice for other young people experiencing psychosis such as:
  • Get help
  • Accept who you are 
  • Be patient
  • Things will improve
  • Little things help, like establishing a routine
People wanted other young people to know that they shouldn’t feel any shame or blame themselves because of their experiences of psychosis, and to accept it as something that has happened. They wanted others to know that they can have a full life.
Sam would encourage young people to get help and support as soon as possible; “Don’t take as long as I did to come forward about it… at the end of the day the more help you get, the better you feel". Barry wanted other young people to know "that things do get better and it’s not going to be like this forever". Connecting with others was important for many people.
Many felt it was important for young people experiencing psychosis to give themselves space and do things that make them happy, and to remove things in their life that are stressful or make them feel bad, and to learn from their experiences.
People also shared their personal experiences of managing their wellbeing and their psychotic experiences.
People had the following advice about getting help. For those who hadn’t yet sought help, Becky said, “You are worth it and it is worth getting help, even if you don’t feel like it at the time. Even if it’s for somebody else’s sake just stick with it and there will be a better day at some point.” Andrew Z said, “Get on the medication, get as much support as possible.” 
 
For those who had already sought help, people said it was important to make sure you are getting the right support for you. Lucy says if you think your medication or other support isn’t right then it’s important to tell your mental health team, because everyone is different and the treatment might not be the right one for you.
 
A few people we spoke to had taken drugs in the past and felt that contributed towards them having psychotic experiences. Fran, who had taken drugs, thought it was important for young people to be more aware of how drugs can affect you.
Advice to mental health professionals
 
People often had a range of experiences with mental health professionals and some had strong feelings about things that were particularly helpful or unhelpful. 
 
Young people who we spoke to felt that mental health experiences were often very personal and thought that treatment and support needed to focus on the individual rather than on the diagnosis. Mental health professionals who treated them as individuals and took the time to talk and listen were seen as most helpful. Nikki said, “It's really important to take the time to listen to someone and just ask about what it's like to experience it. The more you can understand what's going on for them, the more you can help them to find a way out.”
Empathy was seen as important. Young people who we spoke to were very aware when staff were not “up to the job” and seemed not to want to be working in mental health or had no empathy. Sameeha remembers a member of staff being “offhandish” and “rude”. She says you can tell when staff don’t want to be there and don’t have any sympathy. Sameeha says its important for mental health staff to view things through the eyes of the person experiencing psychosis and to engage with them appropriately. For example, if the young person is agitated and scared they might not respond well to being told what to do.
People also had direct advice for mental health professionals about the kind of treatment and care that was needed. Peter felt the NHS should provide people with more information about psychosis to help them gain a better understanding of what’s involved.
You can also read more about people’s experiences of being in hospital for psychosis and receiving support and care from outpatient services and GPs.
 
Advice to friends of young people experiencing psychosis
 
Having friends who cared was something people really valued. They wanted their friends to just be around and not be afraid. Sometimes it can be difficult for friends to know what to say. Hannah’s advice was to never say to someone experiencing psychosis that their experience isn’t real, because it’s very real to them. Also, it’s not helpful when other people claim to have had the same experience. Joseph said: “I think something people generally should avoid saying is, "I know exactly how you feel." Because that can feel a bit alienating, and like - you know - 'no, you don't'.” Hannah advises friends to keep in touch and says its better to try and say something even if its difficult, than to just lose touch. For her, little things like asking ‘how are you feeling?’ instead of ‘how are you?’ makes a difference because ‘obviously you are not good’, but there will be times when you ‘feel’ better or worse.
Advice to family members of young people experiencing psychosis
 
Young people wanted family members to be there for them but not to restrict them too much. It was important for parents to allow them to be teenagers/young people and go through all the emotions that a young person would, without feeling it’s a problem. Becky says that the best way family can help is to not expect too much from you and acknowledge you are doing your best.

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