ICD 11: ‘Everyone experiences phenomena related to disorders – doctors need to provide more insight and greater psychological support’

Patients want doctors to spend more time talking through what went into their diagnoses and how to reconcile self- and societal stigma, finds a review of 78 studies into how people experience disorder diagnoses published in The Lancet Psychiatry today.

“This programme of research is around asking people what they find helpful or unhelpful about the disorders framework."

The research comes just weeks before one the two leading ‘manuals of disorders’ gets its latest release. The eleventh edition of the World Health Organisation’s International Classification of Diseases is seeking to align more closely with the other authority on disorders, the Diagnostic and Statistical Manual.

Today’s literature review finds widespread appetite for greater collaboration and sensitivity in delivering disorder diagnoses. It confirms many patients only find out about their condition when copied in on letters between NHS departments or upon asking to access their medical records.

• Video: How do you feel after a diagnosis?

The study extended beyond these shores. It contains data from research covering the patient experience in 13 countries: Australia, Belarus, Brazil, Canada, Denmark, Israel, Latvia, Netherlands, New Zealand, Norway, Sweden, UK and the USA.

The disorders framework is used 'heterogeneously'

Dr Corinna Hackmann, who is involved in collating lived experience feedback to shape the new edition of the World Health Organisation’s International Classification of Diseases, co-authored the research.

The research team identified a gap in what guidance most medical professionals are given around overseeing and sharing the diagnosis and delivery of a mental health disorder.

“The guidance we issue in our paper is that service users want to be informed and involved in what has gone into their diagnoses,” Dr Hackmann told Mental Health Today.

“If there is currently any guidance out there as to what diagnoses GPs can make and how, I’m not aware of it.”

“GPs may make diagnoses that are commonly seen in primary care, such as anxiety or depression, but I’m not sure if there’s any guidance there.”

“A clinical psychologist may make a diagnosis, but they’d tend to pursue formulation [co-producing a record of a person’s journey towards distress] rather than disorder diagnosis.”

An increasing proportion of the population are turning to ‘Dr Google’, with date analytics services suggesting there are over 74,000 searches for schizophrenia every month in the UK alone.

• Explore Mental Health Today's dedicated disorders information hub

The dizzying number of mental health disorders (there are over 300 in the current edition of the World Health Organisation’s system) partly explains why people turn to the internet to access a short cut to self-awareness.

Today’s research illustrates it’s also being driven by people who have already received a diagnosis but have been offered precious little context from their doctor at the time.

Patients often want to know ‘why me’ and the diagnostic criteria has received criticism from quarters of the mental health community for being confusingly accommodating.

Dr Hackmann agrees there is room for improvement and brevity in ISD 11 but stresses the importance of reflecting on how the ISD is used, rather than doing away with all together, as some of her contemporaries have advocated.

• Learn more about bipolar disorder and borderline personality disorder in Cardiff at Mental Health Today Wales on May 10.

“Everyone experiences phenomena related to all the diagnoses or some [but] it’s not beneficial to have hundreds,’ she says.

“However, lots of people find the disorders framework useful in making sense of their experiences. It provides a shared language.”

“The values of the World Health Organisation are admirable and they are trying to become more aligned with the Diagnostic and Statistical Manual.”

“This programme of research is around asking people what they find helpful or unhelpful about the disorders framework. If people do find the framework helpful, we want to understand what they value about it and what they don’t. Instead of there being a big division between the medical model and the recovery model.”

The study has confirmed that people can find a diagnosis either validating or isolating. Self-stigma can lead people to look to diagnose themselves online but Dr Hackman says her research suggests face to face support is both desirable and desired.

“People feel stigma, stigma about themselves and social stigma. We’re saying that it might be helpful for doctors to have that conversation.”

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The study suggests many doctors are wary of re-traumatising their patients and so some shy away from delivering a diagnosis.

Practice and behaviours vary both within countries and from country to country. “It’s pretty heterogeneous,” Dr Hackman reflects.

More insights are imminent

Her work is not finished. Working with respected author and disability rights activist Professor Tom Shakespeare, who was approached by the World Health Organisation directly, the pair are collating the findings from 10 focus groups with lived experience of anxiety, bipolar 1, depression, personality disorder and schizophrenia.

“We wanted a range of phenomena, in terms of symptoms,” says  Dr Hackman. And schizophrenia and bipolar I are two disorders most associated with stigma.”

It is this second piece of work that is expected to have most weight in the updated edition of the International Classification of Diseases.

The research was shared with Mental Health Today by Norfolk and Suffolk NHS Foundation Trust and the University of East Anglia.