The role of advocacy in the psychiatric assistance in France

Il ruolo dell’advocacy nell’assistenza psichiatrica in Francia

H. Tiriau, D. Attar-Lèvy

France D�pression, Paris

Before presenting to you our Association named “France Depression” I would like to outline the reasons justifying the existence of such an organisation in our country.

The extent of the impact of affective disorders on public health, is due to their high prevalence and cost.

The ground for an organisation like ours finds its reasons in the social and economic problems related to affective disorders.

In fact, the economical cost of depression is increasingly influencing mental health strategies. The strategy for a reduction of health expenses is based on the development of primary and secondary preventive health care. Increasing the level of health education of the population might encourage more people to request care and to be diagnosed. This, in turn will limit the indirect costs of the illness.

In France the Heath cost for Depression are totally covered by the National Health Insurance either for what concerns doctors and psychotherapy pharmacotherapy (old and new drugs).

However, even if it is recognised as a legitimate medical illness by health insurance providers, depression, in France is still at risk of being considered by the general opinion as a very banal non serious illness.

Media misinformation is rather frequent, and it is absolutely necessary to be vigilant in order not to let to confuse the illness of “clinical depression” with the fact of having the “blues”.

In this respect an Association of Patients may better comply with the task of spreading information on what is the reality and on the suffering that those attained by depression face every day. This has to be done together with health care professionals who help us in our battle. Their role is not only that of improving the clinical and therapeutic knowledge of the member of the Association, but also to help us to overcome existing taboos.

Depression is still too often considered to be associated with a “weak personality” or to be the manifestation of an irreversible defect, a “stigma”.

To go from the “fear of a serious illness” to “exclusion from the social life” may be a very short step!

I would like to quote the comments of one of our patient, edited in one of the bulletin of the Association, who said: “fearing total exclusion, you keep this painful fear for yourself, convinced that you will not be understood, that you will be considered mad. The way towards understanding and tolerance is, above all, trough information”.

The French Psychiatrists Community has become increasingly aware of the necessity of keeping patients properly informed on the nature of the illness and on its treatment. However this approach is not yet accepted by everybody.

To inform depressive and manic patients about the nature of the illness constitutes a new requirement today. It is a necessary step in the patient’s management. The “information” is absolutely essential for both the therapeutic relationship and treatment compliance.

In addition it is an intrinsic element improving the patient’s quality of life: in fact the “understanding of the illness” enables the patient to live better with it and to reduce the resulting exclusion.

However today we are still confronted with too many false assumptions.

As for patient’s compliance an example is given by mood stabilizers: according to a recent survey more than 20% do not comply with their prescriptions and many of them are insufficiently informed on the effects of lithium and on the necessity of maintenance therapy.

In theory, in our country, several persons and structures should be involved in the spreading of information to patients. Doctors should provide the primary information on the illness and its treatment, but this information is often very limited and delivered in a too short time, too rapidly.

Moreover one patient out of two does not dare to question his doctor for fear of annoying him or lowering his esteem.

In France, booklets published for the general public which describe the illness and indicate errors that must be avoided are available. But this inforrnation is often counteracted by prejudices and wrong media information. The medical leaflet provided with the medication may also be cause of fear: the list of side effects can be quite alarming for somebody poorly informed on the real meaning of the words. They need to be reassured and informed.

In France the Ministry of Health has undertaken an educational campaign for the general public, based on the distribution of brochures on drugs in general, vaccination, AIDS etc. It is unfortunate that such an initiative has not yet been taken for depression and its treatment. In the field of mental illness in general essential support and information to patients and to their “entourage” is provided by UNAFAM.

In this situation, where delivery of specific information on Depression and its treatment is still insufficient, the only alternative option is represented by Patient’s Organisations, like France Depression, that provide updated and correct information to patients and to their families.

Informing the “entourage” is essential because the level of emotion expressed by the entourage may profoundly influence the course of the depressive episode.

A lack of information may also be the cause of an inadequate attitude by the entourage that limits his action to useless and vain “calls to be more active” rather than to a proper care approach.

Reinforcing the partner is also a necessary step of the patient’s management.

On this specific issue France Depression has recently organised a seminar, open to the public, on the theme “The couple confronting the manic depressive illness”.

The emotion expressed during this seminar, where more than 100 patients discussed and debated with pertinence the daily consequences of the illness, was really very high. The seminar clearly indicated that it is essential to follow not only the patient but the couple for all the length of the therapeutic intervention.

In fact “misunderstanding the partner” is a factor which precipitates relapses; is a factor which prolongs the duration of the episode, and in our experience it is the most important long-term prognostic factor.

Finally we think that the aims of a Patients Association should also be that of supporting and conforting patients who are “scared” in the aRermath of an episode. They may still carry within themselves residual symptoms of depression or they may feel psychologically frail. On this issue self-help groups and regular meetings inside the Association may have a beneficial effect. In fact to have the possibility of seeing the successful social reintegration of other patients, “who have overcame their illness”, can have a non negligible therapeutic effect on patients who are still psychologically weak. Meetings with such patients, as it is done in self help groups, can help to provide a more positive self-image.

Several small-scale organisations created by persons who suffered from Depression exist in France. Among them there is France Depression.

France Depression was founded in 1992 on the initiative of few patients and doctors. The aims of the association specifically intended for depressive and manic depressive patients are:

– to provide updated information on the illness, notably on its progression, on its treatment, on how to deal with it, as well as on the current research in the field.

– to support those confronted with the illness;

– to raise the awareness of the public on the illness and on its consequences;

– to fight prejudices about depression.

In order to attain these objectives, France Depression has undertaken the following actions:

– copies of the newsletter “France Depression Actualit�s” are distributed to most of the psychiatric hospitals in order to make the existence of the Association known to doctors, nurses and patients;

– monthly meetings are held among members in order to allow them to share experiences, point of view and to exchange information on theme such as: the patients social rights, new therapeutic approaches etc.;

– public conference-debates are organised with the support of the Scientific Advisory Committee on themes such as: “mood stabilizers”, “antidepressant drugs”, “manic depression and heredity”, “manic-depression and the couple”, “cognitive and behavioural psychotherapy” etc.;

– a library for the members, containing books on depression and manic depression has been created;

– brochures on the illness and its treatment have been realised and distributed to the members.

These activities are carried out either by the members of France Depression who participate to the daily activities of the Association or by the Scientific Committee composed of national and international experts.

The members of the association are person confronted with the illness and are either patients, parents, friends or health care professionals (doctors, nurses, social workers etc.).

Other goals on which France Depression is working at are:

– to create a “work-study group” on issues related to the medical secrecy and to insurance coverage. In order to better defend the rights of the individual dealing with litigious matters involving insurance companies.

In fact policies often exclude coverage of risks relating to depression or manic-depression.

– to become a “Consumers organisation” vis-a-vis the National Health System and Pharmaceutical Companies, in order to avoid the possible “dereimbursement” of certain antidepressants, or their withdrawal from the market because of “under-prescription”;

– further encourage new research programs on the illness.

The relatively slow “pace” at which France Depression has developed up to now reflects its decision to exist without requesting subsidies or funding to the Pharmaceutical Industry or to Institutions. We prefer to rely on members’ subscriptions, accepting the ups and downs of the mood of our members, as well as the fact that membership is sometimes perceived as a further sign of the illness by the patients and its family.

But why people do become members of France Depression? A patient explained her decisions with these words: “every story begins by “once upon a time …” but not for me, for me one should say “once upon too many tiffles”. Another says “it is the desire to do something with the reality of my life, in order that this suffering might be of some use to others”.

I hope we succeeded in describing our role as an Advocacy Association for Mental Illness in France. Of course there remains a lot to be done in order to be able to assist as much as we would like our members at social, professional and economical level. But we are working on it.

Communication held at Symposium “Role of Advocacy in psychiatric assistance” within the 3rd SOPSI Congress, Rome, March 1, 1998.