Norfolk and Suffolk NHS Foundation Trust (NSFT) has played a leading
role in the first study to report service user perspectives and recommendations
on proposed World Health Organization (WHO) diagnostic guidelines.
Dr Corinna Hackmann, a research clinical psychologist in NSFT’s Research and
Development Department, is the lead researcher of a paper that was published at 11.30pm yesterday by The Lancet Psychiatry.
ICD-11 – The Eleventh Revision of the International Classification of Diseases
and Related Health Problems – will be used for health reporting by
WHO’s 194 members states from January 2022. The ICD is the most widely used
classification system for mental disorders globally.
Dr Hackmann said: “Care needs to be taken with the language of diagnosis and
classification because it has the potential to stigmatise service users.
“We wanted to gain views on the ICD-11 from mental health service users in
order to offer recommendations to the WHO.
“This research offers a unique insight into the views of service users and has
led to recommendations for the WHO coproduced with service users and
“Many service users regarded the proposed diagnostic guidelines as useful but,
in some cases, they found the content and language confusing or objectionable.
“For example, some with a diagnosis of schizophrenia objected to the words
‘disorganised’ or ‘bizarre’ to describe their behaviour because they perceived
these as negative terms, and many service users with depression misunderstood
or interpreted the technical term ‘retardation’ in a negative way.”
Dr Hackmann said that the value of “expertise by experience” offered by service
users in innovation, service provision and research is increasingly recognised.
Their involvement in the ICD-11 study will help to maximise the acceptability
of diagnostic guidelines from the service user perspective.
This is a watershed moment in mental health research and the WHO will review
and consider the coproduced recommendations before ICD-11 comes into use, she
Also involved in the study were the University of East Anglia's (UEA) Norwich
Medical School; Columbia University, New York; and the All India Institute of
It was carried out in the UK, India and US and involved service users in all
three countries taking part in focus group discussions, including service users
under the care of NSFT.
The focus groups were used to collect feedback on five diagnoses: depressive
episode, generalised anxiety disorder, schizophrenia, bipolar type 1 disorder,
and personality disorder.
The Lancet Psychiatry study also acknowledges NSFT library
staff and Dr Bonnie Teague, the Trust’s Research Manager, for their advice and
* Anyone wishing to read a summary (abstract) of the paper that has been
published by The Lancet Psychiatry can so via: www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30093-8/fulltext
Caption: Dr Corinna Hackmann
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