Transforming the lives of young people with psychosis
Peer support worker Craig Mackie is highlighting how the lives of young people with psychosis are being transformed, following a recently-published study on early intervention.
Craig became involved in the study after he had been discharged from the Early Intervention in Psychosis service at Norfolk and Suffolk NHS Foundation Trust (NSFT).
“I got a call from my therapist telling me about a job opportunity one day a week working on a study about Early Youth Engagement (EYE-2),” he said.
The research looked at first episodes of psychosis and demonstrated that the earlier an intervention is carried out, the better the outcome the people using the services. It was led by researchers at Sussex Partnership NHS Foundation Trust (SPFT) and funded by National Institute for Health and Care Research (NIHR).
The study involved randomising 20 teams with 1027 young people between May 2019 and July 2020 to either receive the EYE-2 approach or a standard EIP service.
Work involved looking at what can put young people off addressing their mental health, such as lack of inclusion of family and friends in discussions about treatments, how staff interact with young people and how staff can support young people with their goals and treatment choices.
Since the results were published, Craig has been involved in media interviews for TV and radio, a podcast and a blog. “I was asked if I was happy to talk about the research and thought I had nothing to lose,” he said. “It highlights psychosis in positive way.”
NSFT deputy chief executive officer and chief medical officer Faisil Sethi congratulated Craig on his work and said: “The best way to drive improvements in services is to include the people who have used them. Craig’s input into this important piece of work shows why the service user voice is paramount in moving towards becoming a safer, kinder and better organisation.”
Craig was under the Early Intervention services for three years after developing psychosis in his twenties. “Being part of this study changed my life,” he said. The research role lasted nine months, then Craig was successful in securing a role as a peer support worker with the NSFT EIP team in Great Yarmouth and Waveney, using his own experiences to help others.
“Having psychosis can be debilitating and there is a lot of stigma attached to it,” he said. “I hadn’t worked for several years, was not leaving the house and not seeing family or friends. Early intervention helped me get out and about more and get back to work.”
He said the most helpful thing for him had been meeting people going through a similar experience, in a space knowing that he was not being judged.
Resources from the EYE-2 programme are available at www.likemind.nhs.uk and include online information, booklets co-written with young people and a training programme for staff in how to work flexibly, honestly and openly using key, well-established, motivational techniques to help young people achieve their goals.
Service users and carers said that this approach helped with isolation, trust, personal goals, better communication with the service, shared decision making with staff and family involvement.
Craig said: “The website and booklets are amazing resources for service users and families and friends. They cover loads of different topics including people’s own stories of psychosis and treatment options as well as advice and support.”
Kathryn Greenwood, Professor of Clinical Psychology at SPFT and University of Sussex, said: “This was the largest ever real-world whole population study of outcomes for young people in UK EIP (Early Intervention in Psychosis).”
“This is important because this means that our findings are highly representative of what happens day-to-day in EIP services across the UK.”
Craig talks about The role of a Peer Support Worker in the Early Intervention in Psychosis Service.