This is a special publication for PsychoseNet, both in the Netherlands and Belgium. Not only because the entire board of PsychoseNet Belgium helped write the article (and I did too, on behalf of PsychoseNet Netherlands), but mostly because the research touches the very heart of what we have been working towards for years: making psychosis care more humane, more recovery-focused and more connected.

Science and lived experience go hand in hand in this research, resulting in 13 actions that provide a framework for recovery-focused care.

Recovery-Focused Psychosis Care: What is it about?

The article in Psychosis has already been widely shared on social media. But what is it actually about? Twelve focus groups, 77 people, and one simple question: what needs to change?

The article presents the results of our Flemish research, carried out by Stijn Vanheule and colleagues from Ghent, Leuven and Maastricht, together with a family platform, PsychoseNet and PC Gent-Sleidinge.

The context: Flanders has the highest number of psychiatric beds in Europe, with 139 beds per 100,000 people. Recovery-focused care is the official policy, but daily practice tells a different story.

So four different groups were asked a simple question: people with a sensitivity to psychosis, people in their immediate environment, healthcare workers, and psychiatrists and psychologists. What needs to change as soon as possible?

We expected conflicting answers. But they didn’t appear.

Thirteen actions emerged from the discussions:

1. A warm welcome, not an intake form.
2. A dialogue in which the healthcare professional is allowed to say they don’t have all the answers.
3. Living together. Eating together, talking about music, going for walks.
4. Putting the individual’s story at the centre of care.
5. Building steady, long-term relationships.
6. Patience in a world where everybody is in a rush.
7. Listening to and working with the person’s social context.
8. Making experience experts an equal and paid part of the team.
9. Organising care in consultation with the patient and their loved ones.
10. De-escalation instead of force.
11. Making decisions about care together with the patient.
12. Sharing responsibility instead of enforcing procedures.
13. Connecting with the neighbourhood and wider society.

Two remarks from participants stuck with me

A participant said this about the way someone is welcomed:

“There is a difference between someone who sits down on the bed with you, and someone who stands opposite you with a pile of paperwork.”

And a psychiatrist, talking about continuity, put it this way:

“It’s about building relationships, not just passing information.”

And that’s what we need to focus on!

Time, proximity, continuity and room to diverge

What struck me was that not one group asked for more diagnoses, protocols or a greater focus on symptom reduction. Instead, they asked for time, proximity, continuity and room to diverge when the situation requires it.

Healthcare workers called it creative civil disobedience. Great!

These 13 actions can be used tomorrow in education, peer discussions, policy-making and regulatory frameworks.

The answer to the simple question, ‘What needs to change tomorrow?’

More personal care, stronger relationships, more time and stronger connections.