Can sharing stories of mental health recovery help others?

The Narrative Experiences Online (NEON) study is testing whether viewing, hearing and reading people's real-life stories of recovery from mental ill health can be helpful for people experiencing psychosis or other mental health problems, and for people who care for others affected by mental health problems.

From 2017 to 2019 the focus for the NEON research team was on developing a good understanding about what a recovery story is, how recovery stories make an impact, and how to collect and present these stories. The NEON team interviewed 120 people with experience of mental health problems to collect evidence for how receiving recovery stories can help. Eight focus groups were held with more than 50 healthcare professionals to learn about how recovery stories might find a place in day to day mental health practice. 40 activists who had assembled collections of recovery stories were interviewed to learn about the values and approaches that they brought to their work.

As the study started to collect recovery stories, many of which came from existing public collections, such as book and websites, a particular focus was given to collecting stories from people whose voices are seldom heard by mainstream cultures. The results from that part of the study have now been published and the resulting NEON Collection is now the largest and most diverse online repository of mental health recovery stories in the world.

From 2019 until 2022 the study will be testing whether people benefit from viewing, hearing and reading the recovery stories held in the NEON Collection, and are now recruiting people to participate in three trials:

• The NEON Trial is for people with experience of psychosis in the last five years.
• The NEON-O trial is for people with experience of other mental health problems
• The NEON-C trial is for people who care for others affected by mental health problems.

The NEON trials opened on 9^th March 2020, and anyone who is interested in joining the study can sign up themselves at http://recoverystories.uk by completing a short self-assessment questionnaire. No formal diagnosis is needed to take part in the NEON Trial or the NEON-O Trial, and you will never be asked for access to your medical records.

Participants in all trials will either be given immediate access to the NEON Collection of recovery stories for a year or will receive access after one year for at least a few months. To collect evidence about the impact of receiving (or not) access to recovery stories, participants will fill out questionnaires on registration, after one week, 12 weeks or 52 weeks. Participants need an email address to sign up to the study, but can remain anonymous if they wish.

The NEON trials are led by Mike Slade at the University of Nottingham, Professor of Mental Health Recovery and Social Inclusion and a world-leading expert and published author in this area of mental health research. The NEON research team is based at the Institute of Mental Health, and the trial team also includes researchers at the University of Manchester, Queen Mary University of London and King’s College London. Eleven NHS trusts are supporting the NEON trials, but it is not necessary to be a user of NHS services to take part.

The NEON study is funded by the National Institute for Health Research and oversight is from Nottinghamshire Healthcare NHS Foundation Trust. The NEON trials have been approved by the Health Research Authority and by the This email address is being protected from spambots. You need JavaScript enabled to view it.. The reference for the NEON trials is 249015.