Mental health diagnosis should be a collaborative and useful process, not a meaningless label – according to new research from Norfolk and Suffolk NHS Foundation Trust (NSFT) and the University of East Anglia.

Doctors should work alongside service users to approach diagnosis in a way that is sensitive to individual needs and preferences, so that they explain difficulties, give hope, empower and guide recovery.

A study, published in The Lancet Psychiatry, offers practical guidance for doctors and could lead to service users having a better experience of diagnosis.

The research was undertaken by a team that included a clinician and a service-user from the Department of Research and Development at Norfolk and Suffolk NHS Foundation Trust and researchers at the Norwich Medical School at the University of East Anglia (UEA).

The major review synthesises for the first time the perspectives of service-users, carers and doctors in an attempt to understand and improve the diagnostic journey. It contains data from 13 countries and includes more than 2,220 participants.

One of the authors, Dr Corinna Hackmann, a research clinical psychologist based at Hellesdon Hospital, Norwich, said that diagnosis can be validating and helpful but can also be detrimental and lead to stigma.

“For me, an interesting finding of this study is the discrepancy between the views of service users and clinicians,” she said.

“Many doctors feel that service users have a right to know their diagnosis but at the same time rightly fear the potential harm this might cause, which can be associated with withholding or delaying sharing the diagnosis.

“However, the results suggested that if a diagnosis is made, service-users would prefer that it is shared and discussed with them rather than withheld."

Dr Caitlin Notley, from UEA’s Norwich Medical School, said: “This research supports a sensitive, individualised, collaborative, and holistic approach to mental health diagnosis, which is informative, can empower service users, provide hope and guide treatment."
A major diagnostic manual, the International Classification of Disease - 11th revision (ICD-11) is set for release by the World Health Organisation (WHO) this summer. This study forms part of an important and timely programme of International research aimed at improving the diagnostic process in collaboration with service-users.

“We have developed research in dialogue with the WHO that feeds service-user views into the process of revision for the ICD-11,” said Dr Hackmann.

The paper reports that diagnosis can be experienced as labelling and this can cause stigma.
The authors found evidence of feelings of isolation, confusion, insignificance or distress when a diagnosis is not discussed with service-users, is discovered via health records, in a letter or inadvertently mentioned in a care meeting.

The study suggests that service-users prefer their diagnosis to be given face-to-face, with helpful information, and clearly leading to reciprocal discussions about care-needs and treatment.

Dr Hackmann co-authored the study with Amorette Perkins and Joseph Ridler (former Research Assistant Psychologists) and Daniel Browes (expert by experience and former Peer Support Worker) and colleagues from Norwich Medical School and the School of Health Sciences at UEA – Dr Caitlin Notley, Senior Lecturer in Mental Health; and Dr Guy Peryer, Lecturer in Health Sciences.

‘Experiencing mental health diagnosis: a systematic review of service user, clinician, and carer perspectives across clinical settings’ is published in The Lancet Psychiatry on April 18, 2018.