R. van Voren: Opinions of people with mental disorders are essential for the development of health services

In early September, top psychiatry and psychology experts from around the world will come to Vilnius. They will be making presentions at the first ever Rethinking Mental Health Care” conference, which focuses on human rights in psychiatry and the inclusion of people with mental health problems in society and the development of appropriate services for them. The conference will also bring together half a hundred and fifty professionals from Ukraine, who will be transported from Lviv by three buses for free training on war trauma.

The conference is supported by the Ministry of Health of the Republic of Lithuania, and one of the organisers, Robert van Voren, a professor and human rights activist who has been living in Lithuania for more than 20 years, tells about the upcoming topics, the special workshops, the speakers and other features of the conference.

“Rethinking Mental Health Care” conference has an impressive programme of 40 mental health experts from around the world. What are you proud to have been able to invite to this conference?

A difficult question! Sometimes when I look at the programme, I can’t believe that we managed to assemble such a team of speakers. There will indeed be experts of the highest calibre in every aspect. Norman Sartorius, the “guru of world psychiatry” from Switzerland, whom everyone knows, will be coming. We will also have the best epidemiologist in the field of mental health, Graham Thornicroft from the United Kingdom, who is a former head of the FGIP international board; we have the most prominent person with lived experience, Charlene Sunkel from South Africa; Piers Gooding from Australia, who is one of the best specialists in the field of coercion; Helen Herrman, who is a former President of the World Psychiatric Association, who is also from Australia, and the President of the European Psychiatric Association, Peter Falkai, from Germany. However, I think the most interesting thing is that we have managed to bring together speakers that you would not normally see at the same conference – they come from different fields. Some you would see at psychiatry conferences, others at mental health innovation conferences, others at human rights conferences, and here you will be able to hear all of them in one place over three days.

You pay a great attention to people with lived experience and their inclusion in society. What are the other highlights of the Rethinking Mental Health Care conference?

There is no other psychiatry conference that focuses so much on human rights in psychiatry. The organisation I lead, FGIP – Federation on Global Initiative in Psychiatry – is exclusively dedicated to this, so we always expected a conference where human rights in psychiatry would be a core theme, not a side issue.

As we organise everything ourselves, we have decided not to make any compromises in certain areas: first of all we deliberately do not have any sponsors from the pharmaceutical industry. The second thing is that there is a strong focus on people with lived experience and the third thing is that we have decided to choose our partners very carefully. We only work with people who share our approach to human rights.

FGIP is convinced that the creation of mental health services must involve the people who use the services, people with lived experience (PLE). Services must be personalised and based on respect and dignity.

The client must be able to express his or her views. If supermarkets are always asking customers what they would like, why can’t the same be true in mental health? Of course, it all sounds very nice in theory, but there are more complicated situations with more serious cases. When can you treat a person against their will? If he or she refuses to take medication, should you accept that or medication is needed, you should administer it and force him or her to take it.

We will show the documentary “Emma wants to live”, a story about a girl who suffers from anorexia and eventually dies at a very young age. The film was made at Emma’s request and asks the big question – should mental health professionals have let her die?

Treatment methods are changing dramatically. For example, there used to be a belief that if a person was hearing voices, they needed to be put on medication to end it. In Africa, traditional shamanic medicine simply pierces the ear so that the person does not hear anything, but that does not solve the problem of the voices in their head. It is important to teach the person how to deal with those voices, how to live with them.

This conference is like the closing of a cycle, and I always remember our colleague Saulius Pečiulis, who has contributed a lot to the field of mental health in Lithuania and abroad. We will remember him during the concert. This event is very much supported by the Lithuanian Ministry of Health, Minister Arūnas Dulkys will open the conference. It gives a very warm feeling and shows that we have achieved something in 30 years.

Tell us about the FGIP – Federation for Global Initiative in Psychiatry?

FGIP was founded as a human rights organisation opposing the abuse of psychiatry for political purposes, for example when dissidents or opponents of the government are admitted to psychiatric hospitals and have their diagnoses fabricated. And when the Soviet Union collapsed, we supported people who wanted to create a humane and ethical system of mental health services.

It is quite a strange organisation. It was founded in Paris, then operated for a few years out of Geneva, but since I became head, I moved the headquarters to the Netherlands. Since 2000, we started to set up regional offices, we have one in Vilnius, as well as in Sofia, Tbilisi and Jaffna (Sri Lanka).

As we have become a federation of independent entities, we have agreed that each office can develop in its own direction, as long as it is in line with the FGIP’s ethos. Therefore, all offices are different. The Tbilisi unit is actually a sort of Faculty of Social Psychiatry of the State University, focusing on trauma psychology. The Sofia office is a service provider, a large organisation with about 60 staff. In Vilnius it works mostly on training, in Jaffna the focus is on providing community-based services.

FGIP is an umbrella for all of them. Sets the rules, policies, we have an international council. It has 16 members from all over the world. It includes psychologists, psychiatrists, lawyers, social workers, human rights activists and people with lived experience. In our view, the system for dealing with mental health problems must be based on a community approach, not on institutions. So that these people can be in society, feel part of society.

Why did you refuse sponsorship from pharmaceutical companies when organising this conference?

We have very strict corporate sponsorship rules, even stricter than the British Royal College of Psychiatrists, which is one of the strictest in the world. When a pharmaceutical company sees our guidelines, they disappear. Yes, they can contribute financially, but we will not advertise their products, in many cases we cannot even publish their logo. The pharmacists’ goal is to sell medicines. Our aim is to make people feel good. And medicines do not play a key role in that. Yes, they are often necessary, but not essential. Moreover, it sends the wrong message to those with mental health problems – take your medicine and be well. This is not the case, these illnesses are treated in a complex way.

Moreover, I know of cases where pharmaceutical campaigns are trying to ‘push’ a new diagnosis in the international classification of disorders in order to create a market for their products. That is why we did not want their money.

I have heard that you will be donating part of the prize you have received for services to mental health to the conference.

Yes, I will receive the Pardes Humanitarian Award in Mental Health in October. It is an American award given once a year, usually to two or three people. This time it will be two of us. I have decided to donate all the money I receive to Ukraine. Part of it will be used to pay for the participation of specialists from Ukraine in this conference, and the rest will be used for other assistance to Ukraine.

Can you tell us more about the training for professionals from Ukraine?

When the war broke out, it became clear that we wanted to help Ukraine deal with the consequences of the war and that we did not want a single person supporting Russia’s military actions in Ukraine. I remember that in 2008, the World Psychiatric Association conference was held in Prague, and there were delegations from Georgia and Russia. The situation was extremely unpleasant because the Russians were very aggressive, shouting at the Georgians to justify the invasion of Georgia. I cannot imagine any similar situation at a conference on human rights. However, there are people from Russia who do not support their government and who condemn the war they have started. I do not think that they should be excluded simply because of their nationality or language. That is why we have decided that, when registering, each participant must state that he or she is in favour of the sovereignty of countries and is against the invasion of autonomous states by other countries.

So there will be several groups of people who will come at no cost. These are people from Belarus who have helped the victims of repression by their government, and 150 Ukrainians will come by buses from Lviv, and their registration and accommodation costs will be paid. We will give them a one-and-a-half-day training on war trauma. We are doing this for two reasons: firstly, to improve their knowledge of war trauma, which they will need in their own country, and secondly, as an investment in the future of mental health services in Ukraine. We hope that the system will be different after the war than it was when it started. It is a leap forward, a leap to turn crisis into opportunity.

Are Ukrainians interested in this opportunity, are they actively registering?

Yes, there is a lot of interest. Registration is already closed because all 150 places filled up quite quickly. As there were more people interested, so we made a waiting list – if someone who registered cannot come, then those people will get a place. The waiting list is now almost twenty people as well. There are some Ukrainians who want to attend at full price because they want to be sure that they get into the conference.

There will also be training for young Lithuanian psychiatrists. What will be taught there?

This training is organised by the Lithuanian Association of Young Psychiatrists. The training will be given by the most experienced, so to speak, stars of this conference – Graham Thornicroft and Norman Sartorius, who will teach about leadership. Young professionals will learn the essentials of making presentations, finding partners, writing articles, conducting research, etc. There will be a very limited number of people available, the candidates were selected by the association and now the presenters themselves choose the participants.

And another training – for people with lived experience?

Yes, at the request of the Ministry of Health we are organising a half-day workshop for PLE from Lithuania. We hope that this will help them to set up a Consumer’ Organisation in Lithuania. It is desperately needed. There is a long-overdue need for an NGO to represent people with mental health disorders. It is important for the Ministry, they want to have a connection with their clients, they want to know what they need. We hope that through this workshop we will get to know people and identify those who could take the lead in this area, establish a Consumers’ Organisation that will become a strong partner of the Ministry. People can still register for these sessions on our website: https://www.rethinkingmnh.org/registration/ . There will be 50 participants in total, so we are looking forward to welcoming people with personal experiences. Their opinion is very important.

Why did you choose the Palace of the Grand Dukes of Lithuania for this conference?

It is a big event. The weather in Vilnius is still great in early September, and we wanted participants to be able to attend a conference in a pleasant environment, in the heart of Vilnius, and to be able to explore the beautiful Old Town of Vilnius. Everything is within walking distance. It’s an unusual venue for a conference, but I’m always looking for special places. The environment helps to create the atmosphere. It is, after all, a historic building with a history of rulers. From a psychological point of view, it is also good to hold a conference on the future of mental health in a place where a new building has been built on old foundations.

On the first evening after the reception, there will be a concert by Alexey Botvinov, a pianist from Ukraine, who is already well known to the Lithuanian public. It will be a special evening for him, as half of the audience will be from Ukraine.

We are organising this conference as we have always wanted a mental health conference to be. Now it has many layers. Some people are already asking – so when is the next one? I am drenched in sweat – I need to organise this one first, because it is the biggest conference I have ever organised. But who knows – maybe people will say it was great and we will try our best to have a second “Rethinking Mental Health Care” conference that is unique and different from all the existing mental health conferences.