Lille Part 1 – Pre-programme on ICD-11

I am at home and I have been writing/finishing this blog on my adventures in Lille, France a bit later as usual. Here it is:

Part 1 – Pre-programme on ICD-11

Today it’s Thursday 30 January 2014. I’m in Lille, France for the European Congress, organized by the World Health Organization Europe Centre Collaborateur (WHOECC) with the title: How to promote empowerment experiences of mental health users and carers in Europe? Indicators and Good Practices. I will give a presentation on Friday 31 January about the Eindhoven Model (Family Group Conferencing to avoid forced psychiatric interventions) as a good practice, and I have also been asked last-minute to present ENUSP’s position on the Indicators of Empowerment on Thursday 30 January in a plenary session. ENUSP is the European Network of Users, Ex-users and Survivors of Psychiatry (www.enusp.org)

There was a pre-programme on diagnostic guidelines (International Classification of Diseases and Related Health Problems version 11, also called ICD-11). At 9.00 AM the pre-programme started with a presentation on the development of the ICD-11 classification of mental and behavioural disorders, by Geoffrey Reed of the World Health Organization.

It was a relatively weird session. I couldn’t help to notice the absence of the CRPD-definition on disability. The CRPD defines disability as a barrier in interaction, not as an isolated phenomena inside a person. Disability and ability is about inclusion, chances and possibilities. However, at this ICD session, it was only about static labels of “mental illness” (the incapacity-approach). The tone of labelling hasn’t significantly changed in the ICD-11, which is in stark contrast with the current human rights developments for persons with disabilities, which demand for a paradigm shift and a change of cultures and attitudes towards persons with disabilities, including persons with psychosocial disabilities. The ICD-11 doesn’t reflect such a change.

Geoffrey Reed (WHO) told us that the ICD-classification started in the late 19th century as a report to monitor and research “why people die”. The ICD-6 was referred to as a list of causes of death. Then in 1948 the World Health Organization (WHO) was established and they gradually expanded the focus towards “why do people get sick or disabled”. The WHO intends to focus on health rather than diseases, illustrated by the WHO-definition of health: Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

The international classification is a core constitutional responsibility of the WHO, to come to unified definitions, and 194 member states have signed the international treaty of WHO. But WHO only does the definitions and classification of diseases and various treatments, for which the conditions are listed in the ICD. The framework of health services and regulations are arranged at the country’s policy level (department of health, not WHO). The WHO does have treatment guidelines for improving health, but has no authority over its implementation and can only make suggestions on which the ministry of health decides. So basically the WHO is mainly unifying the definitions around health issues and treatments. The classification and definitions enable communication and research on specific topics.

Once every year all the ministers of health gather in the World Health Assembly (WHA) where they make policy decisions for WHO (as a kind of secretariat). The WHA ordered to revise the ICD-10, which has led to the development of ICD-11. The full concept of ICD-11 should be ready mid 2015. The ICD-10 dates from 1990, which means it only includes evidence until the late 80s. By now there is much new evidence and some concepts have changed, therefore ICD-10 is outdated and needs to be revised, as was said by the speaker.

In developing the ICD-definitions on diagnosis and treatment the main focus is on “clinical utility” (conceptualization/understanding, communication, implementation in clinical practices and useful to identify interventions and outcomes). The WHO has no experience in including users or families in this highly technical framework, and wants to know how this can be done meaningfully and substantive. This is an open invitation. Some new “mental illnesses” will be included in ICD-11, and it is important to avoid that the pharmaceutical industry is going to dominate the treatment development.

The ICD is the most used classification system of “mental illnesses” in the world (70%) and DSM4 is used by 23%. The large amount of around 200 categories of “mental illnesses” is considered impractical, and there is a wish amongst psychiatrists to reduce the number of categories. The cross-cultural application of ICD on “mental illnesses” remains hard.

I understood from this presentation that the concept of ICD-11 seems to lack the CRPD-perspective in many ways.

The diagnosis and classifications in ICD-11 are still being attached to personal features of the individual, and not to the barriers in interaction. Disability and exclusion results from social circumstances and societal barriers: our society isn’t inclusive for all of our human diversity. This is called the evolving concept of disability: Disability resides in the society, not in the person. It is about inclusion. This evolving concept is very much applicable to the mental health field: The real issue is about interaction and inclusion, which is also reflected in the dynamic term “psychosocial disability” (a barrier in interaction on a psychosocial level, which is mutually shared by the inaccessible/not-understanding community and the person who faces these challenges/disabilities/exclusion). It is very important to recognize the multidimensional aspects of disability, and to replace the static one-way label of “mental illness” by a dynamic two-way definition corresponding with the evolving concept of disability, to enable the paradigm shift from incapacity to support.
Unfortunately, the developers of ICD-11 didn’t take the CRPD as a starting point, and didn’t re-define their concepts according to this universal UN-framework of human rights of persons with disabilities (CRPD). In this way, WHO places itself on an island, separate from the main land where the CRPD is implemented. It really felt like we were far-away.

The concept-chapter of ICD-11 on mental health seems to be already written, largely in time for 2015, and the user- and family-perspective is being included as a last step. It seems like the wrong order to me to invite us at the end. (nothing about us, without us).

There were about 400 people in the room (not very participatory), and there was a little bit of time for some questions, remarks and answers.

A remark came from the audience. A person with a user-perspective told us about the International Network of Hearing Voices, which is active in 29 countries in the world. This network provides evidence that it is possible to live well while hearing voices, and the term Recovery reflects to the fact that people can live with these so-called “illnesses”. It is not an illness, but it is merely a social and human rights issue of how to deal with these voices. It is about the relation to the own experiences.
The experiences of persons living with voices show that psychiatric labelling results in a negative status as secondary citizens. The question is: How can we achieve that in developments in the mental health field, the user perspective is included equally to that of clinicians?

Another interesting remark was made by someone from the audience who spoke about how the classification is used to pathologize a significant part of human diversity, with huge negative effects on a national scale, and worldwide; “the classification can be compared to the components of a bomb, shouldn’t that be stopped?” (there was no direct response, except for some applause). I liked this remark very much.

After hearing a panel with various opinions on the ICD-11 development, it was time for the first coffee break. It had already been a lot of information to take in. The concept of classification needs a thorough analysis from a human rights and user/survivor perspective. Together with other ENUSP-delegates we decided not to take part in the workshops on ICD-11, because we didn’t have any preparation on this topic and we felt we couldn’t do that instantly. (and we wouldn’t want people to think we supported this process).

So during these working groups from 10.30-12.00 we had a spontaneous ENUSP side-meeting in the upper hallway, where we discussed our opinions on the session on ICD-11. And also we took some time to prepare the presentation of the position of ENUSP on the Indicators of Empowerment in detail. Then we had our lunch outside the congress in a bakery with 2/3 of the ENUSP-delegation, and then we went back to the congress building.

Apparently, the ICD-11 programme had an open ending after the workshops, and the programme was followed by the official opening of the Empowerment Congress. The development of ICD-11 wasn’t mentioned any further on the congress.

Personally I find the current development of ICD-11 (as a one-way label) very alarming, because it undermines the fundamental human rights-approach of the CRPD (a two-way definition of disability with a focus on enabling inclusion). The current psychiatric labels are very often creating and stimulating exclusion and alienation. I think ENUSP or WNUSP needs to prepare a position on this.