After 15 years in and out of psychiatric care, Maya knows Belgium’s mental health system well. A striking young woman with enormous, sad eyes, Maya speaks in a heavy voice as if physically weighed down by worry.

At psychiatry’s heart, she says, is the constant threat of force. Not only physical coercion, but something more subtle. 

A photograph Maya took of an isolation room she was once held in. “I took this picture because I want people to know what happens behind the walls of psychiatric institutions,” Maya said. © 2019 Maya for Human Rights Watch

 

“It’s accepting to take a sedative pill to avoid a forced injection,” said Maya, a student in her late 20s who struggles with suicidal thoughts and episodes of self-harm. “It’s accepting to be tied to the bed knowing that if you walk out, they will call the police. You have to abide by their rules and play their game. The psychiatric system is overwhelmingly oppressive.” 

Like many people with mental health conditions, Maya (not her real name) has spent years bouncing between psychiatrists, hospitals, clinics, and various medications. Her experience had been highly negative and did little to help her cope with day-to-day life. 

Yet that all changed after an encounter in Brussels with the mobile team at TANDEMplus, which supports people with mental health conditions without diagnosis, hospitalization, or medication. The only “treatment” TANDEMplus offers is support, in the form of regular home visits to talk through people’s emotions and concerns. They help the person find coping strategies and tackle practical problems that have brought them to the point of crisis, be it a debt issue, help with household bills, or mending ties with family members. They also refer them to social workers or other services. 

TANDEMplus worker Céline Godart. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

The support is only given with the person’s full consent, reflecting TANDEMplus’ core philosophy: that the person has control over their own life. This model is unlike other outreach programs in Belgium and could be a model for European countries looking to support people with psychosocial disabilities in a way that respects their human rights.

After a friend referred Maya to TANDEMplus, an outreach worker named Céline visited her at home. Maya spoke about how she was feeling, honestly and openly, and says the result was eye-opening.

“With Céline, it was the first time I experienced such an equal relationship with a professional,” Maya said. “She has no power on me. She’s my ally in my battle.”

TANDEMplus is not like many other mental health outreach programs, which are often linked to hospitals. These often simply export what hospitals do – with an emphasis on medication and treatment – outside the hospital’s walls. Instead, TANDEMplus gives practical support to help people with mental health conditions manage daily life.

TANDEMPlus workers

▪ Staff initially work in pairs

▪ Short-term contact

▪ Staff are trained on the job

People can contact TANDEMplus directly or be referred by a friend, relative, or family doctor, who call a hotline staffed during office hours. Workers are then dispatched in pairs to make a home visit, usually within 24 to 48 hours of the initial call. They meet the person who wants help, and together they devise a plan to help make life feel manageable again.

TANDEMplus currently has a team of five outreach workers. Staff don’t need to be medically qualified, although most previously worked as health professionals or care workers. Experience, personality, and their ability to form a relationship are more important than any other qualification. The aim is to get people with mental health conditions back on their feet, while at the same time keeping them out of hospital. 

“We Don’t See A Schizophrenic. We See A Person. It’s A Very Big Difference.” Philippe Hennaux

TANDEMplus co-founder Philippe Hennaux. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Philippe Hennaux is a psychiatrist in his mid 50s who helped co-found TANDEMplus four years ago. He’s larger than life and bursts with energy and ideas. Decades of observing people bounce in and out of hospital inform his belief that the traditional psychiatric care model is flawed. 

“Psychiatric patients are one of the last groups whose rights are not respected,” said Hennaux. “This is because people are afraid of them and what they might do.”

He believes psychiatry should first and foremost be based on human rights – particularly the rights to autonomy, dignity, and informed consent. Instead, psychiatry often wavers between helplessness and force, he says. “Either they do nothing and say ‘I can’t do anything for your daughter.’ Or they say ‘I’m coming with my big muscles and my syringes.’”

TANDEMplus philosophy

▪ People, not patients

▪ No force. No diagnosis. No fee

▪ Full consent

TANDEMplus works in the area between these two extremes. 

There are only two rules,” Hennaux said. “We don’t abandon someone, and we don’t force someone. When people call us, they’re a citizen. Not a sick person, not a patient, not a user, not a client.”

TANDEMplus puts control in the hands of the person. It aims to avoid hospitalization, and does not hospitalize people against their will. Staff don’t deal with medication. The service is entirely free and doesn’t depend on the person having medical insurance. As a result, staff don’t need to ask for the person’s ID card before meeting them, or even register their name. The ability to remain anonymous is another way to let the person maintain control. 

“When People Go Back Home, It Starts All Over Again.” Céline Godart

TANDEMplus worker Céline Godart gets about Brussels by bicycle. © 2019 Stephanie Hancock for Human Rights Watch

Céline Godart has worked at TANDEMplus for three years. She has a calm manner and a soft, friendly face framed by round tortoise-shell glasses that reinforce a sense of earnestness. She used to work with teenagers in psychiatric hospitals but left because it was hard to make progress with patients in an institutional setting.

“In hospital you’re a bit stuck,” she said. “You see a person every day but don’t see them in their own living space. The environment is very important.” 

During a hospital stay ordinary life is on hold, and for many people when they go home, life can feel unmanageable. Godart says often it’s the small things in life that quickly become overwhelming, and that’s what she tries to fix. The aim is not to treat a person, but to be their partner instead.

A general street scene in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch (NB: No-one associated with TANDEMplus is depicted in this photograph)

“Small details create big mountains,” she said. Sometimes it can be as simple as someone not having changed their address, which means they don’t receive their bills to pay them on time. And this lands them in trouble with court bailiffs. 

“You get to their house and find there are thousands of Euros of debt for a small 10 Euro bill for a hospital blood test.  So when we arrive, we say ‘OK, first let's change your address, so that it doesn't start again.’ It's often small things that help us get going.”

The relationship, and much-needed trust, can develop fast.

“I quickly feel very close to the person,” Godart said. “We go to their house, meet their family, their children recognize us. Our work is to lay a foundation around the person that’s sufficiently solid for them to continue making progress psychologically.”

“In Hospital, You Don’t Get Better. In Bed, Nothing Changes.” Patrick Janssens

TANDEMplus co-founder, psychologist Patrick Janssens. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Patrick Janssens cuts an unassuming figure at TANDEMplus headquarters. He’s an attentive listener and speaks so softly you often have to strain to hear. These qualities might well explain his success in a world where people often feel that no one truly understands them.

“The problem with psychiatry is that people hope that if you receive medication you will be cured,” said Janssens, a psychologist and the program’s co-founder. “This is not, or rarely, the case.”

A eureka moment for him came with the realization that most people they visit have already been treated in a hospital.

Sixty-one percent of people they see have previously been in long-term residential psychiatric hospital care, sometimes multiple times. And 78 percent of them already have a family doctor, or a psychiatrist, or both. The fact that people contact TANDEMplus even though they are receiving medical care suggests that the treatment they receive is not meeting their needs. 

Staff meeting at TANDEMplus offices in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

For people whose main experience of mental health treatment has been inside a psychiatric hospital, being supported at home can be a revelation. 

“No one gets better in bed,” Janssens said. “You get better when you’re in contact [with people], when you feel useful, or when you discover you’ve found your place.” 

In 78 percent of the cases where its staff are able to successfully establish regular contact, TANDEMplus helps people avoid going into the hospital, usually with a combination of psychosocial support or practical help on their own terms, but also by re-establishing people’s social support networks. These links to family and community, which provide a person’s sense of purpose and belonging in the world, are seen as key.

“If I See You Guys, I Calm Down a Lot.” Zaher Amiri

Zaher Amiri, an asylum seeker who struggles with depression. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Richard Boland is an experienced member of the TANDEMplus team. He’s worked a lot with refugees in the past, and can use this to his advantage. He’s been supporting Zaher Amiri, an asylum seeker from Afghanistan, for several weeks. Amiri was forced to leave his wife and two sons in an unsafe area under Taliban control, and he has spent years trying to meet the requirements to bring his family to join him in Belgium. To relieve stress, he cuts himself. He often feels suicidal.

TANDEMplus worker Richard Boland talking to Zaher Amiri in Amiri’s apartment. Amiri is an asylum seeker who struggles with depression. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

“His case is very complicated,” Boland said. “I got him a good lawyer, and we tried to straighten out his asylum procedure.” 

After weeks of regular visits, Amiri says he thinks of Boland as a friend now. “If I see you guys, I calm down a lot,” Amiri tells Boland as the pair chat over a flask of mint tea in his modest first-floor apartment, surrounded by the objects that now define his life: open packets of medication, piles of paperwork, a phone he uses to video call his sons. “You come, make appointments with lawyers, and accompany me to the doctor. That is very good for me.”

 

“When They Came, I Was In Crisis.” Florence

Street scene in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Florence has long blond hair and is wearing dark sunglasses when we meet at an outdoor cafe. They lend her a film star kind of look. But her sunglasses do not hide the tears streaming down her cheeks. Florence (not her real name) cries throughout our interview, even though she remains strikingly calm and composed throughout.

“When they came, I was in crisis,” said Florence, a 47-year-old mother and grandmother who survived a traumatic sexual assault and whose anxiety was so overwhelming she could no longer leave her house. “I was curled up in a ball at home. I weighed no more than 49 kilos.

“My family doctor suggested I see the mobile team. They came in a pair. They treated me with kindness, not pity. They helped me to verbalize certain things. They put in place follow-up appointments with a new psychologist. When you’ve been mistreated so much [by doctors], you forget how to trust. With them, I trusted them straight away.” 

“It's Not Our Ambition to Show That Hospitals Don't Work. But It's What We See.” Patrick Janssens

TANDEMplus worker Steven van der Auwera meets a woman at her home. Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

Despite the growing trend for mobile health teams, levels of forced hospitalization are high in Belgium. The country has one of the highest number of psychiatric beds per capita in the European Union – an average of 136 beds per 100,000 people, versus a European average of 69.

And the cost to the public is high. Thirty days in a psychiatric hospital costs €4,718 (US$ 5,179) while the same stay in a psychiatric ward of a general hospital costs €10,339 (US$ 11,349). But community-based care is far more cost-effective.

Mobile teams are a cheaper way to provide support to people in acute crises, and can support far more people than hospitals do with the same resources. And, as TANDEMplus’ own data shows, not only are hospitals more expensive, they are also not always effective.

TANDEMplus worker Steven Van der Auwera on his way to a home visit. © 2019 Stephanie Hancock for Human Rights Watch

This, co-founder Patrick Janssens admits, is a source of irritation for some.

“It's annoying [for hospitals] that our figures show that after hospitalization, lots of things aren't resolved,” Janssens said. “But we don't have our mind set on closing hospitals. The challenge for me is how we can continue our activities while being in competition with residential psychiatry.”

It’s worth stressing that mobile teams’ cost-effectiveness is not a reason to invest less in mental health – if anything, more resources are needed. The fact that so many people contact TANDEMplus for help, even after receiving specialized medical treatment, shows that the need for effective mental health care is greater than ever. 

“Our Strength Is Also Our Limit” Steven Lambrecht, TANDEMplus worker

Staff meeting at TANDEMplus offices in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch

While TANDEMplus’ small team helps many people – on average around 400 a year – with more staff, they would be able to help even more people. Ideally the government would invest in more person-centered programs like TANDEMplus. There are other limits too, like the fact that calls are only accepted during office hours, and that there is no weekend coverage.

Another difficulty is how best to withdraw staff when they’ve bonded strongly with the person they’re visiting. TANDEMplus guidelines say engagement should be short-term – ideally not longer than six weeks. But Janssens admits this can be hard.

“We try to establish, or re-establish, a contact network around the person and then withdraw,” said Janssens. “It’s not easy because people will form an attachment.”

The flip side of TANDEMplus’ strict rules about consent – the very thing that sets it apart from its peers – is that some people who could benefit from help unfortunately do not receive it.

“The whole model rests on the person agreeing for us to come,” said Philippe Hennaux. “We have to drop a whole number of cases of people who say ‘We don't want to see you.’ I haven't invented a solution for that yet.”

Interactions can also end abruptly.

“If you invite me to your house, it's your house, not a hospital,” Hennaux said. “You can make me a coffee, [but] then tell me to get out and you don't want to talk to me anymore. And I have to follow your opinion.”

“She Says The Right Thing” Maya  

A general street scene in Brussels, Belgium. © 2019 Stephanie Hancock for Human Rights Watch (NB: No-one associated with TANDEMplus is depicted in this photograph)

At the heart of the TANDEMplus philosophy is a sense of equality. For people like Maya, who’ve been subjected to forced treatment in the past, their fear of psychiatry is understandable.

“Even when you go voluntarily to the hospital, at any point it can become involuntary,” Maya said. “At any point they can inject you or not let you go home.”

Maya says forced treatment made her reluctant to cooperate in the past, but she trusts her TANDEMplus worker Céline Godart because she knows she won’t harm her.

And Godart, who once reached Maya within minutes of her phoning to say she wanted to jump off a bridge, has played a key role in keeping Maya safe.

“Céline is the only person who is on my side,” Maya said. “She can convince me to do things, to take care of myself, when others can’t.”