Schizophrenia is a complex mental health condition that includes periods of psychosis and affects one in 100 people.
When someone experiences psychosis, they lose some contact with reality. This might involve seeing or hearing things that other people can’t, believing things that are not true, or they may have confused thinking and speaking.
The Psychosis United service user involvement group is made up of people who have received care from EPUT’s Mid Essex First Episode in Psychosis team.
Assistant Psychologist Morgan Smith has led on setting up the forum for volunteers to share their ideas and feedback to develop the service and ensure it meets people’s needs.
Members chose the group’s name and work with Morgan and her colleagues, psychologist Claire Stubbins, and peer support worker Phil Cross, on projects to improve information and care for service users and increase awareness of psychosis.
Morgan said: “We wanted to create a space where we could hear about people’s experiences and include them in developing our service in meaningful ways.
“The group has brought our current and previous service users together to share their perspectives and work with us to improve services.
“It has also created friendships and members feel that their own wellbeing has been boosted by just attending the group, which is amazing.”
They have also set up a social group for service users, who meet fortnightly to take part in various activities.
Morgan said: “It has been a chance for people to meet each other and hear about their experiences. “It has been a lovely way for people to not feel so isolated and know that they are not alone in experiencing psychosis.”
Psychosis United also help to train staff to better understand what it is like for people experiencing psychosis, so they can improve their care.
For example, they have told staff that people can feel anxious when they are discharged from the service. A new Next Steps group is being organised to prepare people for discharge.
The First Episode in Psychosis team and Psychosis United members are also looking at other ways to help EPUT staff, GPs and hospital staff better understand psychosis and the needs of people who experience it.
Mike McDonnell, a Psychosis United member and EPUT lived experience ambassador, said: “I love the Psychosis United group. It is a friendly, easy-to-access space for those with lived experience of psychosis to be able to connect and feel more human.
“It’s also a great opportunity to give back to a service that has massively helped us.
“One thing I love is that everyone is listened to and heard.
“Morgan and Clare take our thoughts and opinions on service improvement and genuinely act on them with the team. They then come back and report updates.
“It’s lovely seeing genuine progress made, which seems rare to find these days.”
To find out more about our services for people experiencing psychosis, visit Our Services page.
Visit the Rethink Mental Illness website for more information about schizophrenia and psychosis.