The role of advocacy in psychiatric assistance in Switzerland: a critical overview of the present situation

Il ruolo dell’advocacy nell’assistenza psichiatrica in Svizzera: una panoramica critica dell’attuale situazione

J.P. Kummer

Equilibrium, Unterageri - Switzeland

Professor Montgomery, the eminent psychiatrist, told us in Venezia when we founded Gamian that we should be angry – we, patients and advocates for patient – angry with psychiatry and also angry with the arduous way the patient has to take his illness through the many layers of human society and societal behaviour towards him. In the other works, the stigma he carries from day ONE of his sickening slow fall into the abyss …

Angry with psychiatry; let me illustrate: A stockbroker with one of the big Swiss banks became deeply depressed because he was required to change from the ring at the Zurich stock exchange to the computer. His wife heard about us and called about self-help and we of course encouraged her sick husband saw the psychiatrist again who convinced him to enter the clinic due to his major depression with considerable suicidal thoughts. He was admitted to the closed ward.

When he became better he transferred on a Friday to the open ward. Most everybody, however, was going home for the weekend and he became very lonely wanting to go back to the closed ward he would feel at home. No doctor being present he was not allowed to change wards again and so went home to his family. He complained to his wife that he was being poisoned in the clinical with the medicaments and that his brain was sick, paralyzed, blocked and rotting away. On Sunday afternoon he left to go back to the clinic but took the bus to the high bridge and jumped to his death.

Some time later I took his widow to see the medical director and among the many things which were discussed asked him why the doctors did not inform the patient in details about his depression, did not explain to him that there was most likely a malfunctioning of neurotransmitters (made visible by PET images of healthy and depressed brain scans) which would be corrected by proper medication and in turn would much improve his condition. I am sorry to report that there was no constructive discussion possible about this case, the doctor defending clinical procedures and the professional competence of his co-workers and not showing any signs for possible modification of his approach to such and similar cases.

Ladies and Gentlemen, this is what we are angry about and often up against in psychiatry: The lack of personal engagement and involvement with the patient in the clinical or in ambulatory treatment: The doctors does not follow up and check on compliance or telephone when the patient misses his appointment. The patient and his partner or “significant other” is not as demanding and therefore not treated the same way as – let us say – a heart patient who wants all information on his condition and the therapies involved.

The patients with a depression is more difficult to approach and treat because of the symptoms of the disease. How can you join forces with the doctor in combating your depression if you are without energy, dead tired, are anxious, cannot decide or concentrate and have no interest in anything? Instead of taking the lead isn’t it simpler then as a doctor to say well, here is your medication and I told you about the necessary compliance in the patient or if this does not work in his partner, must follow through and control. Nobody will finally be more thankful to the doctor than the patient and his family.

I submit than in our stockbroker case, had we been able to get this man into one of our self-help groups and let him talk about his sorrows and anxieties and offer him our similar experiences and views of the illness and its therapies, this well liked and respected man of 52 with a charming wife and three lovely young children might be alive today …

I am president of equilibrium, advocacy association for bipolar disorders in Switzerland, founded in 1994 and counting 600 regular and 150 associated members, The Swiss Society for Suicide Prevention and Crisis Intervention is a corporate member of equilibrium. We run 52 self-help groups in all parts of the country and organise a day-long national convention in Berne on October 24, 1998. We enjoy acclaim and support from our members, healthy or ill, from many of the leading professionals in psychiatry as well as from the pharmaceutical companies actively marketing drugs for psychiatry. This means proof to us that we are on the right track.

We strongly believe that as soon as a patient is moving out of the “tunnel” of a major depression and starts to function again, he must become active and do something for himself. Selfhelp is called for. We believe that such group therapy is on a level in value at least par with classic or alternate psycho-therapy. The value to the patient can be enormous and a dynamic group has an incredible capacity for real healing. The testimonial of many of our group members support this claim. The reasons for becoming sick are explored together and slowly one discovers the sense of it all. What is my body, what is my mind trying to tell me when the brakes are put on?

A breakdown which appears like the mind suffered a short-circuit leading to a total mental blockade can be interpreted as the mind saying: “I have enough of your high-pressure existence, I am closing down for a rest and overhaul and while you are at it you might as well do same thinking as to how to prevent future such episodes or breakdowns. Easier said than done, though.

Myth – reality – vision

It is a myth to believe that the correct antidepressives and some psychotherapy will heal a depression once and for all. The stories of people in our groups prove it time and again: they become better with the therapies applied, then they slide back into the sickness and may develop a wave form of their disposition.

The reality is that the many patients lose interest in their therapies as soon as they get better and want to forget about the whole thing, strike from their mind the disease they just experienced hoping it wall never cath them again. In reality they remain scared. Taboo and stigma blossom.

It is a myth to believe that our society as far as mental illness and associated stigma is concerned is better educated and shows a more realistic approach.

One might think so when speaking with individuals but the echoes after our many efforts to start real two-way communication on the subject are very few indeed.

It is a reality that some GP’s insist on treating a patient – instead of referring him to a psychiatrist. They treat and hope to heal his depression having too little experience with the illness to use the whole range of medication available today, or more and more a combination of drugs. They use what they know worked on other patients and are very often stymied. Unwilling to ask the advice of an eminent pharmacologist they try and muddle through. All this while the patient suffers and while neither he nor his partner muster up enough courage to another doctor.

The vision – our vision – is letting the patient with a major depression benefit from tricyclics and SSRI’s best suited to reinstate biochemical balance in the synapses so that his though processes may function normally again, his world of feelings becomes richer and his consciousness becomes clear in all dimensions. Then cognitive or interpersonal or situational psychotherapy is called for, far superior to help a real depression than classic psychotherapy or analysis. On the other hand when a depression is past it may be good to dive deeper into the psyche getting better acquainted with the self that has revealed itself to be so sensitive, tender and demanding care. It may help to prevent a relapse.

The vision on self help: More and more does joining a self help group prove here and in many other countries to be very supportive and reassuring to a person still very sensitive and vulnerable. The group is as considerate and tender towards him as necessary and makes him feel at home, sometimes more than in his usual surroundings. The group helps him to rectify misconceptions about the illness, erroneous beliefs that might stimulate hopelessness about getting well again. When necessary the group can be outspoken and incisive when someone is on the wrong track and is obstinate about it. The group is for persons who want to know what others have done in the same predicament. It is a place to which one take one’s problems for analysis and solution, or just good advice. It is a clearinghouse of sorts for new ideas and information. Also, new friendships are often formed among the members of the group: Mal comune – mezzo gaudio.

We have 52 groups active in Switzerland in all regions of the country. At about 7 people per group this makes 360 people all together. Let us say at any given moment about 1% of the population experiences a major depression which should be followed by attending a selfhelp group: One arrives at the incredible number of 65.000 persons! If 1/3 of those people only join a group this would still mean that we should form 3.000 new groups. In the USA about 400 groups are in existence. Calculated as above, the Americans would have to form about 80.000 new groups!

The VISION on Stigma: Imagine for a moment that the prime minister of a country, a high officer of the Armed Forces, the president of a large Corporation or a bank, an illustrous college professor, a famous movie actor (like Rod Steiger) in short, people in the public eye announce to the world that some time ago they suffered a serious depression or a member of their family committed suicide! This would advance our cause immeasurably because it would then become apparent that these people are not ashamed, that the disorder will go away when well treated and that nobody is to be blamed when depression hits, because it can and often does run in the family. We know several such famous people in our country but no one has stepped forward despite our prodding. So we must do the job ourselves but there are few of us who will freely step out or up to the microphone. Most are too afraid that it will affect their professional future, however, all of us who have taken the step report good results and enjoy a new sense of freedom.

CONCLUDING: Bipolar disorders are major health problems in the world and are on the increase everywhere.

The financial loss, the material impact on society is much greater than the direct cost of treatment. In the USA it is estimated to be over $ 150 billion in 1995 75% of that cost was due to sick leave, absenteeism and reduced productivity.

Realize that 75% of the depressed persons are in the work force!

Undertreatment and abandoning treatment because of side effects of the drugs and because of the associated stigma are major contributors to the staggering costs.

Almost all patients will benefit from treatment and appr. 80% will recover from the illness.

There is an urgent need in Switzerland and world-wide to educate the public, the medical profession, government and the media about the symptoms, the nature and the therapies and the cost of the disease called bipolar disorders. It is an immense task because the illness is on the increase! Let’s tackle the job together.

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